Nathan's Voice

Please Support our Family and Friends Autism Team in the Upcoming AutismOklahoma PieceWalk

2012-02-22T22:19:00.000-06:00

Our Family and Friends Autism Team "Nathan's Voice" is participating in the upcoming Autism Oklahoma Piece Walk, as we did last year. We walk each year in support of our almost nine year old son who was diagnosed with Autism four years ago. Our Family and Friends Autism Team is very excited to be a part of such an AWESOME opportunity to "pay it forward" in the autism community!!
Please consider supporting our Family and Friends Autism Team "Nathan's Voice" by either walking with us on Saturday, May 5, 2012 and/or making a donation towards the 2012 Autism Oklahoma Piece Walk, thru our team's participation. You are welcome to follow our autism team on twitter @NathansVoice for updates on the upcoming walk.

The Piece Walk and 5K is the largest single autism event in the state of Oklahoma. Attended by an average of 5,000 people every May, the annual Piece Walk and 5K generates monies back into the community in the form of grants or special projects and also provides operating funds for AutismOklahoma.org.
If you are an Oklahoma family, and want to start your own autism team in support of that special loved one diagnosed on the autism spectrum, check out and register for the Autism Oklahoma Piece Walk and 5K! Follow @AutismOklahoma and @MyFriendDash on twitter for updates on fundraising events leading up to the Autism Oklahoma Piece Walk.
Thank you for the continued prayers and support ... it is much appreciated!!

Was Your Child Recently Diagnosed with Autism?

2012-02-14T00:07:00.000-06:00

Our Newest Featured Guest Blogger is Amalia Starr, Autism Motivational Speaker, Independent Living Coach and Author. Please enjoy her post and feel free to leave a comment or question below for Amalia.

Lorrie

If yourchild was recently diagnosed with autism, it is important to be aware thatnegative feelings will arise. Try not to get attached to those feelings, do notnumb them out, and do not bury them. They will shift over time. Remember, it isa process. We are all different, but I have found that surrendering to"what is" helps one to move through the acceptance stage morequickly, as resistance to "what is" will only prolong it. When youare able to face the diagnosis head-on, the negative feelings will begin to fadeaway, and acceptance is right around the corner.

1. Gather as much information as possible.

2. Joinsupport groups.

3. Talkabout your child's disability.

4. Keepa journal, and write down anything and everything.

5. Findone person you can share your inner-most feelings with.

6. Whenyou are ready, talk to other parents. They can be a great source of informationand support.

7. Tryto live in the present moment, whenever you can.

8. Becourageous, and believe in yourself.  

9. Trustyour feelings.  

10. Bekind to yourself.

Do notkeep secrets, especially about a health condition. It causes more harm thangood.

My son,Brandon was diagnosed with epilepsy and learning disorders at age nine. Thepediatric neurologist told us to tell no one, including Brandon, that he had epilepsy, due to thestigma attached. For several years, I did what she said. That was one of theworst things I could have done.

I knowfrom personal experience, that when our children are helped at an early age,they have a much better chance of changing negative behaviors, improvingperformance, increasing self-acceptance, and self-esteem. However, if youmissed that opportunity, as I did with Brandon, do not give up. We did not find out Brandon had autism until he was thirty-twoyears old. Early intervention is key but, I know firsthand it's never too lateto get help.

A) WhatI wish I knew early on about having a child with special needs:

1. Donot take it personally.  

2. Itis not your fault.  

3. Thesooner you give up resistance, the sooner you can help your child.  

4. Trust yourself.  

5. Whentraditional treatments are not working, look into alternatives.  

6. Doctors are not always right.  

7. Finda physician you and your child like, and who understands your situation.

8. Acceptance comes only when you are ready.  

9. Takecare of yourself first, and you will have more to give.  

10. Getas much help, assistance and support from people who care, as often aspossible.  

11.Hold onto HOPE, and never let it go.

Asparents, we must remember raising a child with special needs is a process.There may be days when we do not know how we can hang on, but somehow we makeit through. The tools I found to be the most helpful were living in the moment,and having hope.

When welive in the moment, not out into the future, it helps to eliminate fear andanxiety. I also found that holding onto hope was not a luxury, it was anecessity.

AmaliaStarr is a Mother, Motivational Speaker, Author and Independent Living Coach.Starr's youngest son, Brandon, is thirty-nine years old. He has autism,intractable epilepsy, and severe learning disorders. The professionals whoworked with Brandon said he would never be able to live alone. They werewrong. Brandon has been living on his own for thepast fourteen years, enjoying his independence. There is HOPE!

Formore information on how to help your child with special needs reach his or herfull potential please visit: http://www.AmaliaStarr.com, and accept Amalia’s offer of a free phone consultation.

FollowAmalia on Twitter at: http://twitter.com/autismmomexpert

Visither new non-profit, Autism Independence Project: http://www.autismindependenceproject.org

*Visit our Giveaway to Enter and Win a 1st Edition copy of Raising Brandon!

My Cup Runneth Over!

2012-02-09T23:37:00.001-06:00

Wednesday morning at 12:01am, my beautiful granddaughter was born. I had the pleasure of witnessing her birth, as I did when her older brother was born a little over two years ago. My precious daughter is their mother and one that makes me proud to be her momma. Both her and her brother have experienced more than their share of disappointment before, during and since the divorce of their father and I over a decade ago. To see my daughter as a momma making important decisions, and taking into consideration how those will affect her family, reminds me that she has matured so much in the last few years. He brother just left for Basic Training four days ago after enlisting in the Army last fall. He had wanted to see his niece born before he left to start his service in the Army. It is safe for me to say that my two older children have grown up and started their own individual journeys. I am raising their two younger brothers with the man I love and find myself asking "where has the time gone?" I am not questioning my seasoned life because God has blessed me to the point that my cup runneth over!

I am Running Out of Tissues!

2012-02-06T01:53:00.000-06:00

Words can't express how this momma feels. Even though my eighteen year old son enlisted in the Army in August of last year, and we knew he wouldn't be leaving until February 6, 2012 for Basic Training, it doesn't make it any easier for me to see him go. He was able to see almost everyone from my side of the family when we got together at Christmas. Since then, I have gotten him and my Dad together, taken him over to see my husband's parents who have treated him & his sister as their own grandchildren and have spent as much time as possible with him over the last few months. It has been a very emotional week while I was helping him get his paperwork, bank account and all the things he needed together so that he could pack. He spent some time over the weekend with his 2 year old nephew and his pregnant 22 year old sister, who is due to deliver his niece anytime. Tonight, I gathered him and his almost 9 year old & 10 year old brothers tonight for them to have a chance to spend time with their big brother before he leaves out later today for Basic Training for the Army. My youngest boys are both too young to understand what this really means but, I am glad that I made it possible for them to see him. It could be a minimum of three months before he comes back from Basic Training. If everything works out for him and he gets a chance at Airborne school and then at becoming a Ranger, it could be quite awhile before he gets to return home. Either way, when he does get to come home, he will be a changed person. The Army will make a man out of the little boy I gave birth to almost nineteen years ago. I am fighting back the tears as I type this and just as I have been for the last forty-eight hours!
I am going to try to get some rest before I have to get up, with the alarm in four hours, and rush the boys off to school so I can shed some more tears at the airport. I know this post isn't directly related to autism but, it affects me which will eventually affect Nathan and the rest of the family. Please keep us in your thoughts and prayers during this period of adjustment. I am dealing with a difficult medical diagnosis and could use a bunch of positive thoughts, also. I want to thank you for continuing to follow our blog! We will be back to bringing you Featured Guest Bloggers, more resources and more fantastic giveaways in the near future. If you would like to contact me with special needs resources to list on the blog, news that would be of interest to our readers in the autism community or would be interested in offering a resource for our future giveaways, email lorrieservati@yahoo.com at your convenience. I always look forward to hearing from our readers! Good night and I hope you have a great week!!

Educational Parent Seminar in Tulsa, OK

2012-02-01T17:29:00.001-06:00

Parent Seminar

Oklahoma Vision Development Center is hosting a FREE informational Seminar for Parents about how vision affects learning. Seating is limited so please call 918-633-9085 to register.

When? February 16, 2012 7-8pm

Where? 4520 S. Harvard Ave. Ste. 100, Tulsa, OK

Dr. Monte Harrel's training is in development and children's vision. He has a passion for helping kids and educating parents and professionals on the options that are available for kids.

"Petition against changes to Autism Spectrum Diagnostic Criteria"

2012-01-22T15:34:00.000-06:00

Dear Autism Community,

I wanted to draw your attention to this important petition that I recently signed:

"Petition against changes to Autism Spectrum Diagnostic Criteria"
This petition is against the proposed changes to the DSM-V, which would eliminate high functioning ASD patients (PDD-NOS, Aspberger's and Childhood Disintegrative Disorder) from the Autism Spectrum. More than 3/4 of high-functioning autistics would no longer be considered autistic, placing their access to social and school services in jeopardy. Changing the name of their diagnosis from ASD to another name does not make them any less autistic. Basic formative differences exist in all autistic children's brains - including enlarged white matter growth in the first year of life leading to a large cranial size in infancy; reduced brain stem size and function, and confused neural connections, which lead to sensory and social difficulties. These formative differences exist in patients with PDD-NOS and Aspberger's as well. Changing a name will merely shift the tide, rather than stopping the epidemic, and it shifts focus from the real problem - and that is the root cause of autism, which must be addressed.

I really think this is an important cause, and I'd like to encourage you to add your signature, too. It's free and takes just a few seconds of your time. Please sign the petition below and be sure to share with everyone you know!

Create a Petition by iPetitions.com

Thanks!

Lorrie Servati
Family & Friends Autism Team "Nathan's Voice" support almost 9 year old Nathan in his daily struggle to function with Asperger's Syndrome. Changing the manual won't change the fact that these individuals are still affected by this disorder ...it will however keep them from receiving the services they now receive and will still continue to need in the future. Making these changes to the manual will mean the available resources will be taken away from these students, "robbing" them of the "trust" and "routine" they have built in the system that is supposed to "protect" them!

The Rubbermaid "Give the Gift of Organization" Contest

2012-01-13T17:05:00.003-06:00

Hi Faithful Followers,

I just entered my family in the Give the Gift of Organization Contest and we need your vote to help us win!!

You can view my entry and vote for us here:

Contest details

Thanks and wish us luck!

Lorrie

YOU could Win a Kindle Fire & Apple iPad2 (US & Can)

2012-01-09T21:43:00.000-06:00

Rafflecopter is celebrating the launch of their new app with a giveaway!
Enter to win a Kindle Fire and an Apple iPad2! When you enter the giveaway below,
make sure to say that Nathan's Voice referred you! Open to US & Canada.
a Rafflecopter giveaway

Christmas with the Family

2011-12-29T21:15:00.000-06:00

My wish is that everyone had a wonderful Christmas with family and friends! Our family opted to have a stress-free Christmas Lunch at a local Hotel Restaurant this year. This was in lieu of our traditional, push-up-your-sleeves, rush-around-getting-everything-ready, and hope-you-get-a-chance-to-say-something-to-everyone, before they leave your house, Christmas Day get together. We made reservations in hopes that everyone would be able to make it but, my Dad had decided to help at a local soup kitchen instead of being in close proximity to my Mother AND the whole reason she was joining us from out of state was because she was convinced my brother could make it...he found out Thursday, after Mom had picked up her rental car, that he wasn't going to be able to be here! It was becoming even more frustrating than I thought it already was but, the key word is "survival"!!

My Mom, my sister, her family, my daughter, her new family and my oldest son joined us for a really nice Christmas Buffet spread. We exchanged hugs, cards and gifts for the children, the grandchildren, the nieces and nephews before separating but, not until our Mom had taken pictures of our respective families! My sister actually told her, with a very straight face, that's why her family had taken a professional family picture!! lol I had to keep from laughing out loud when she said it! I had a nice visit with our Mom after she unpacked at her motel not far from my house. This made it possible for us not to be interrupted by the boys at our very cramped house while we caught up. This was the first Christmas in ten years that Mom had joined us.
Today was special for me because I was able to spend some time with my brother and help him get moved into his new apartment closer to me. It was a surprise when he called me yesterday afternoon and asked for me to help him this morning. I had other plans which I quickly shifted in excitement, looking forward to seeing him for the first time in almost a year and a half. I had forgotten how much taller my younger brother is than I am...I shadow him by almost 6 inches! We had lunch, hung out some more and then I eventually drove myself back home. He called me just a little while ago to give me his new phone number and thanked me for helping him today. Awe!!
Now, all I need is to see if I can get my Dad to join us for a movie and dinner one night after the New Year, when everything returns to as normal as possible. He recently started a new job and that might be challenging. Otherwise, it has been a great Christmas week!!!
I hope that everyone has a safe and Happy New Year in 2012! Thanks for taking time to read my blog...I hope you check out the resources, the Guest Bloggers and hang in there for the next giveaway!!

Lorrie

"Adventures of One Sock" series update

2011-12-28T21:02:00.000-06:00

My friend, Roy Ruiz, is working on the "Adventures of One Sock"

book series and has joined Kickstarter for help with project funding! Every lit bit helps, click HERE to join the fun and make this Adventure last!

If you haven't had a chance to read the first book, click on the picture of the book cover shown above to get a copy of your own!!

Nate Rocks the Boat - Book 2 in the Nate Rocks Series

2011-12-26T22:31:00.000-06:00

I hope everyone had a wonderful Christmas with family and friends! I want to share something with you.

If YOU have not had the chance to read Nate Rocks the World by Karen Pokras Toz, you still have a chance to get either a digital copy and/or a signed copy of the 1st book in the series by becoming a backer of the 2nd book Nate Rocks the Boat. My 9 year old Nate won a signed copy of the 1st book, Nate Rocks the World, in a blog giveaway earlier this month. We are looking forward to this next book because my two boys are going to spend a week at day camp this coming summer! Click HERE to help make this project possible!!

1-DAY Giveaway to WIN a Christmas DVD!!

2011-12-19T18:10:00.003-06:00

Congratulations
to our WINNER...
Candace Dysinger
Final Finale to our

Cheerful Children's Christmas Movie Giveaway!!

ENTER this giveaway for a great DVD of Christmas stories!

♥ YOU can earn up to 30 ENTRIES towards the giveaway!!

This giveaway is ONLY 1-DAY so don't miss out!!
♥Giveaway starts Wednesday December 21st midnight EST AND
ends Thursday December 22nd midnight EST

♥ Please click HERE to ENTER!

♥ MOVIE DESCRIPTION:
Ten holiday favorites filled to the brim with Christmas spirit and heartwarming stories. Featuring the voices of Hilary Duff, Haylie Duff, Mary Tyler Moore, Jane Seymour, Tony Curtis and more. Includes How the Toys Saved Christmas, In Search of Santa, Roxanne's Best Christmas Ever, The Littlest Light on the Christmas Tree, Jack Frost, Santa's Surprise, A Christmas Visit, Christmas Comes But Once a Year, Hector's Hectic Life, Snow Foolin'.

Cheerful Children's Christmas Movie Giveaway....Woohoo!!!

2011-11-30T19:40:00.011-06:00

As an added surprise from Nathan's Voice, we are giviing away a different Children's Christmas DVD movie every week for the next 3 weeks...starting tonight at midnight! Be sure to check back each week to enter for your chance to win...EXTRA entries available for those who use the "giveaway tweet button" and/or the "giveaway facebook share" each day during the GIVEAWAY!! Good Luck to Everyone!
                                                                                                                                           Lorrie

Psst!
This is the 1st movie given away!!

Winner:George Mossey

and then, starting Dec. 8th!

Winner: Kristin Nelson

and then,starting Dec. 15th!

Winner: Elizabeth Gorski

FREE Upcoming Parent Seminar!!

2011-11-29T11:12:00.001-06:00

I will be adding a page to my blog in the near future that will be kept up-to-date on available training, seminars and educational opportunities for Parents, Professionals and, most importantly, special needs children.
Lorrie

Parent Seminar

Oklahoma Vision Development Center is hosting a FREE informational Seminar for Parents about how vision affects learning. Seating is limited so please call 918-633-9085 to register.

When? January 26, 2012 7-8pm

Where? 4520 S. Harvard Ave. Ste. 100, Tulsa, OK

Dr. Monte Harrel's training is in development and children's vision. He has a passion for helping kids and educating parents and professionals on the options that are available for kids.

Autism and the Holidays

2011-11-20T16:40:00.002-06:00

You know those Christmas pictures where the little kid (we’ll call her “Bobbi, circa 1968”) looks terrified as she peepees in Santa’s lap? Just try to keep that image in mind as you contemplate that Mom and Dad’s idea – or the extended family’s idea – of what will be fun for the holidays may be a bit much for a child on the autism spectrum.

Whether you celebrate Christmas, Hanukkah, Kwanzaa, or Festivus, the next several weeks come loaded with certain expectations that you may want to revisit in light of the reality of autism.

digitalart/FreeDigitalPhotos.net

We’ll start with some words of wisdom from Dr. DeOrnellas. Fortunately, we seem to be going through another period in our country in which SIMPLIFY is the byword. More than just a catchphrase, simplifying our lives at this time is crucial to the well-being of our families – especially for our children with autism. This is not the time to be Super Mom or Dad. Keep things simple, only do the things that you and your children really enjoy, and allow yourself the pleasure of doing less.

Prepare, prepare, prepare. Years ago, Dr. DeOrnellas introduced me to a wonderful resource: Social Stories from Carol Gray. If you’re not familiar with Social Stories, they are a wonderful resource. The goal is to create a story that tells children what behavior is expected in a new situation or a situation in which their behavior has been less than stellar in the past.

For example, if you have to take your children to Great-Aunt Harriet’s house, you and your children make up a story about what they are to do. This should be done a week or two in advance and can be read every day until the visit. Social Stories work, and they can be fun, too!

Social Stories can be as detailed and repetitive as you need. For example, you can show your children pictures of the people who are going to be at the celebration, and rehearse greetings. This serves two goals: behavior training and helping to reduce your child’s anxiety. You can look at a copy of the map and highlight your route and discuss where you might stop along the way. You can also plan what familiar CD’s you might listen to in the car. You can rehearse, rehearse, rehearse greetings and conversations. This will also give you a chance to take note of what seems to be daunting to your child.

I’m going to let Dr. DeOrnellas take the wheel for a while, because what she has to say is so good: It can go something like this…When we go to Aunt Harriet’s house, we use our inside voices and keep our hands in our pockets. We look at all the neat stuff she has, but we do not touch it. We keep our hands to ourselves and we don’t touch anything unless Aunt Harriet says it’s OK…. You get the drift. Social Stories prepare children for the unexpected and give them the tools they need to stay out of trouble. Social Stories aren’t just for the kids, by the way. It also helps if you prepare Aunt Harriet and let her know that Lulu does not want to be hugged, but Suzie doesn’t mind.

It’s a great idea to actually put your expectations and concerns in writing and share them with your extended family, if they’d be receptive. It’s also going to help you to clarify your own expectations. Not sure what to say? I have a great starting point for you. More than a decade ago, Viki Gayheart wrote a “Dear Family and Friends” letter from the perspective of a child with autism. It has stood the test of time, and can be found at http://www.danasview.net/holiday1.htm

Some of the tips include:

- The holidays may be fun for many people, but people with autism find a break from their routine to be the opposite of fun;

- Others should not be offended (or surprised) if the person with autism needs to take some breaks from socializing;

- Many people with autism find it difficult to be touched, so exuberant greetings and hugs may not go over well;

- Dressy clothes may present sensory challenges; and

- What appears to be bossiness is actually an attempt to feel safe and in control

Author Gayheart closes the article with a plea for empathy: “I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes!” I really appreciated this letter, as it forms a great outline for some of the major issues that we face when we take our act on the road for the holidays.

Keep surprises to a minimum. This theme was echoed by my friend Bobbie Padgett, a mom of five, who also happens to be Mrs. Kansas 2012 (how cool is THAT?), who said, “I think one of the secrets to surviving, and if you are lucky, enjoying, the holidays with special needs kids is to stay as structured as possible. I always found that things went more smoothly when our kids knew what to expect. Grandma showing up as a "surprise" maybe isn't a good idea if one of the children is going to be displaced by it or if it's going to require a great deal of change. Being out of school is fun, but sometimes it can be challenge for kids who really need routine.” Bobbie has lots more good stuff to say about lots of things, and you can find her at www.mrskansas.org/blog/ . (Tell her The Other Bobbi says hi.)

Let mealtime be peacetime, even if Junior has a grilled-cheese sandwich for Thanksgiving dinner. (Or, for that matter, for every meal for the whole visit.) Planning ahead when it comes to food is also a smart move. If your child has a short list of things that he is willing to eat, you’ll want to bring lots of Those Things wherever you go.

Toa55/FreeDigitalPhotos.net

Granny may be very proud of her plum pudding, but Junior may think it’s just One Unfamiliar Thing Too Much. I also need to remember that my child on the spectrum isn’t going to be too keen on waiting for mealtime when she sees Just What She Wants on the buffet table. Social Stories can only take us so far, and she isn’t going to appreciate the social niceties of waiting until everyone has gathered and the preliminaries (greetings, saying Grace, etc.) are done. Yes, I am training her, but it’s a much slower process than it is with other kids. That doesn’t make her a bad kid any more than it makes me a bad mom. (I’m sure, Gentle Reader, that you could point out so many other reasons, but I digress…)

This is yet another area in which the holidays aren’t the time to be SuperMom and SuperDad. As Dr. DeOrnellas puts it: Many of our kids on the spectrum are very picky about food. I was talking to a Mom yesterday who said her daughter only eats brown foods so she was trying to add a little color to her diet by putting purple food coloring on a chicken nugget. Holiday foods can be very colorful and full of things we don’t want our kids to eat.

If your child is picky or is on a special diet, please bring food for him to any gathering. These are his comfort foods and forcing him to “just try it” is sure to set a meltdown in motion. This is not the time to try new things. There are plenty of other new things going on. Also, and most importantly, please warn the hostess that your child is not going to eat the carefully prepared meal, the fruit cake, etc. Do not allow someone else to try to force feed your child. That’s actually a great lead-in to the next step, which is:

Try to prepare friends and family. You can tell folks in advance about the challenges that may arise. If your child has a meltdown, it shouldn’t come as a shock to family and friends. Spelling things out at the start is going to be a big help. That’s not to say that everyone is going to be empathic or understanding, but it’s worth trying. Aunt Ethel may think that you’re a lazy parent because your child is playing with Legos or watching a favorite video instead of socializing, but Aunt Ethel may surprise you with her generosity of spirit if you talk to her in advance about what you plan to do.

Am I the only one who does this? I doubt it. This year, I actually started seeing Christmas decorations in some stores before Halloween. (And, by the way, what is up with THAT?) As the shopping season seems to stretch backwards towards Labor Day, I do my best to avoid getting too wound up. Part of my strategy is to do as much of my shopping as possible online. I don’t like the mall any more than my kid does, and this time of year, it’s a madhouse.

I also make people laugh by starting to address my cards Ridiculously Early. (That doesn’t mean that I finish them early, or even on time. Or at all.) This also gives me the time and space to involve my kids in the process.

photostock / FreeDigitalPhotos.net

Know When to Say When. Let’s say you’re traveling. If you need to stay in a hotel so that you and your child can have someplace neutral to retreat to, go for it. If you need to take two cars or to arrive for just part of the celebration, do what you reasonably can do and don’t feel bad about it. If it’s time to just have a quiet holiday at home with your immediate family, enjoy the peaceful holiday and connect with everyone by phone.

Arvind Balaraman / FreeDigitalPhotos.net

Dr. DeOrnellas has more to say about this point: If staying in a hotel is not an option and you have traveled 1500 miles to visit Grandma and Grandpa, you are probably staying in a strange (to your child) home with strange people. Work with Grandma and Grandpa to find a space where your child can get away from everyone. For example, set up a video and some toys in a study or unused bedroom. When your child starts to unravel, she can go to her special place to regroup. And don’t be offended if she chooses to stay there for most of the visit. I’m jumping in to put this next part in bold because, to me, it’s the most important sentence in this whole article: The way you will be feeling at the end of the visit (tired, overwhelmed, cross, ready for a nap, and ready to go home) is the way that your child feels the minute she gets on the plane.

Stuart Miles / FreeDigitalPhotos.net

Build in more respite than you think you’ll need. If you plan on doing a manageable number of things with a manageable number of people involved, you may miss some activities, but that may be what you need to do. I will bet you a dollar that you won’t be bored. If one spouse can stay at the hotel with a child or two while the other spouse hits the town with the other kids and the relatives, that may work too.

Consider autism-friendly vacation venues As autism awareness has increased, so have accommodations. Whether an outing is just a side dish to our vacation plans or the main course, it is wonderful to have some options. In the U.K., for example, there are literally dozens of entertainment venues and vacation spots that are autism friendly. I was delighted to find the following listing: http://www.autism.org.uk/living-with-autism/out-and-about/holidays-and-days-out/holidays-autism-friendly-venues.aspx There are also sensory-friendly movie theaters, and even Broadway is getting on board. This Fall saw the first performances of an autism-friendly Lion King on the

Great White Way!

Yes, this impacts the whole family; that’s not all bad. In a post about last year’s holidays, blogger Brooke Potthast reflected on the challenges that autism had brought to Christmases past, and that, in retrospect, the “struggle and brokenness of autism” had, over the years, brought about unselfish beauty in her now-grown kids. I was really moved when I read her post, which you can find here: http://www.ageofautism.com/2010/01/honest-holiday-thoughts-from-an-autism-mom.html This is helpful to remember as we worry about whether our other children are being impacted. Every gift has its costs, and every hardship comes with hidden gifts. I have found this to be very true when it comes to living with autism.

Consider a simple, quiet holiday at home: We’ve talked a lot about going places and interacting with people. You may also want to consider something truly novel and mind-blowing: staying at home with Just the Fam. As I worked on this article, I realized that this would be the most loving and sensible choice for my own family this year.

photostock / FreeDigitalPhotos.net

Dr. DeOrnellas has personally enjoyed this approach: Everyone comes into the holiday season with their own ideas of how it is to be celebrated. I encourage families to sit down together in mid-November to talk about what is important to them. It is a good time to remind our children, and ourselves, why we are having these celebrations and what they mean to our family. I encourage each family member to name one or two things that they would not want to miss out on. For one, it is making sugar cookies and decorating them with Mom; for another it is driving around looking at Christmas lights or going to Midnight Mass, or singing carols, or buying gifts for families in need. Each family member has something that is special to them. Once you figure out what those things are, you can start to eliminate all the others. In our family, we were able to drop a lot of the commercial, retail aspects of Christmas (our holiday of choice). We don’t go to the mall or fix foods that no one really cares about. Instead of spending time and money on expensive gifts for each other, we now give small tokens of love and spend a fun day together playing games with our extended family. With the money we save, we “adopt” another family.

Stuart Miles / FreeDigitalPhotos.net

One reader, Venessa, likened a special-needs situation to life with small kids: you need to face it realistically, and next year won’t necessarily be like this year. In Venessa’s case, she and her husband decided to spend several holidays at home with just the immediate family when her kids were small. After considering the car trips or airport nightmares (pick your poison), the sleepless nights due to disruption of the kids’ routines, the difficulty of accommodating special dietary needs on the road, it was just easier to have simple holidays at home, and it gave birth to some wonderful traditions for them. When my children were infants, I was comfortable with saying NO a lot, and people mostly understood. Now that they’re a little older, I feel like I need to explain when I decline an invitation, but the truth is, I don’t. We have been sad to miss a couple of family weddings in a row because it would have been too much for our kids, but the extended family Really Does Get It. They were kind to invite us, but they also understood that it would have been a disaster. However you and your loved ones spend your holidays, I thank you for joining me this month and I thank you so much, Lorrie Servati and Nathan’s Voice, for letting me be your Featured Guest Blogger for November! It’s an honor for which I am truly thankful this Thanskgiving.

Bobbi Sheahan and Kathy DeOrnellas, Ph.D. are the wonderful authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Portions of this article are excerpted from Chapter 3 of the book, which is available at www.fhautism.com and wherever books are sold. You can visit Bobbi’s website at

www.bobbisheahan.com and she would love to hear from you at me@bobbisheahan.com. You can also connect with Bobbi and Dr. DeOrnellas on Twitter: @BobbiSheahan and @kdeornellasphd

This Momma has the Privledge of Learning More About the Autism Spectrum

2011-11-15T23:47:00.011-06:00

     Unless you have had the chance to read about us from the beginning, our youngest son, Nathan, was diagnosed almost four years ago. My husband and I have an older son besides the two older children I have from my first marriage. My eighteen year old son has enlisted in the military and goes off to basic training in February. My twenty-two year old daughter has blessed me with a grandson who just turned two years old. She is pregnant and patiently waiting to deliver my granddaughter about the same time her own brother is leaves for basic. It is an understatement to say that I am running around in circles, especially since I am trying to make this holiday season one for our family to remember.
     Besides being "mom", I am a substitute teacher and the PTA unit Treasurer for my boys' local elementary school. I am also an advocate for autism awareness, understanding and acceptance in our area. I have been reading RULES a book by Cynthia Lord to Nathan's 3rd grade class this year as a way to help them understand that everyone is unique and special. There is nothing I wouldn't do for my children. I am constantly searching for ways to help Nathan feel comfortable and included wherever he goes. With the support of his teachers, regular and intervention, he has made tremendous progress in the last three years.
     I began blogging six months ago and I have had the pleasure of working with many wonderful parents of children on the spectrum. My intention was just to share our story with others and have something for Nathan to be able to look back at when he gets old enough to appreciate the progress that he has made. I then added a few resources that I thought would be of use to those that took the time to visit my blog. I decided that a giveaway would be fun and as part of the "prize pack", I offered a Featured Guest Blogger spot. Not sure of what kind of response I would get, I tried to not let myself be set up for disappointment. This is how I jumped in with both feet and am proud to say I am glad that I took the chance to step outside my comfort zone! I don't have as much time to write as I would like but, having a monthly Featured Guest Blog spot and the fantabulous giveaways provided by sponsors, I am not as stressed to return to the late nights I used to keep inorder to roll out a story! Whew!!
     This last weekend I was socializing with the founder of a local autism organization on facebook. We were discussing the aspects of my blog and her website being linked to one another when she asked me a question that took me out of my comfort zone. I suppressed the urge to tell her that my son needed me so that I could escape and answered her question as calmly as I could. All that she had asked me was if I would be attending the annual Oklahoma Statewide Autism Conference. It wasn't something that I should be ashamed of but, since I haven't been working as much as I am used to, money was an issue. I had missed the first conference because at that particular time it was impossible for me to spend any amount of time away from Nathan and then the second one last year because I was fulfilling a long-term substitute assignment. I had received all of the emails about this year's conference but, had subconsciously dismissed the idea of going. It took this very special friend, that asked me if I was going to attend the conference, to make me realize that this opportunity to absorb all that I can possibly learn from so many experienced speakers only comes around once a year. With her persistence, I talked it over with my husband, registered online for the conference and applied for the Family Stipend that was being offered. The conference is scheduled for this coming weekend and I was afraid to get my hopes up but, I received confirmation that I am eligible for reimbursement of part of my registration cost, afterwards as long as I attend both days of the conference. Every little bit helps! SO, this momma is excited about going to the Oklahoma Statewide Autism Conference this Friday and Saturday to learn as much as she can to help her son and share with her readers!! Pray for my husband as he gets our two boys ready for school on Friday morning, drops them off at school, works and then remembers to rush to pick them up that afternoon...there just might be a story of their adventures, also! *winking*

Thanks for joining Lorrie Servati & Lorna d'Entremont on the Coffee Klatch!

2011-11-07T22:51:00.008-06:00

If you weren't able to join Lorna d'Entremont (@chewelry) & Lorrie Servati (@NathansVoice) this morning on The Coffee Klatch Tweetchat, on "How parents can prepare their child for a substitute teacher and how they can prepare the substitute teacher for their child"...it's NOT too late to check out the great advice that was shared with us on the Tweetchat via the Transcript! alturl.com/6v5cb #tck If there is something you would like to share, please feel free to leave a comment below. We appreciate everyone who stopped by @TheCoffeeKlatch this morning & shared with us! Lorna has also composed a post from the Tweetchat and it can be viewed at http://kidcompanions.com/?p=7518&preview=true.
YOU can join Lorna on @TheCoffeeKlatch every Monday morning at 9:00 a.m. EST for topics that are close-to-home with special needs. To join Tweetchat chatroom go to http://t.co/wlTvGk0 Sign In - put TCK in the hashtag box then click Authorize App - thats it you're in #tck

TweetChat - #tck

tweetchat.com

The First Five Things to Do When You Learn That Your Child is on the Autism Spectrum

2011-11-01T00:00:00.051-06:00

by Bobbi Sheahan with Dr. Kathy DeOrnellas, Ph.D.

Current statistics place more than one in every one hundred children on the autism spectrum. If you’ve just received a diagnosis that your child is on the autism spectrum, I have a few suggestions for what you might consider doing first.

I was in your shoes just a few short years ago, and I am joined today by Dr. Kathy DeOrnellas, who helped to light the way for my family. Since I can’t bring you to her office – and I would if I could – I’m bringing her to you.

Photo Credit: Carl Fields

1. Breathe. You can’t judge yourself – or your child, or what your parenting experience is going to be like – by your hardest day & I am here to tell you: the early days are the hardest. Remember, you still have the same child you had before somebody pointed to him and said the word “autism.” I won’t annoy you with the phrase, “New Normal,” (all right, I guess I just did), but I want to urge you NOT to make any judgments about what the rest of your life, or even the next year, is going to be. Now is NOT the time to torture yourself with the Big Questions about your child’s future.

Remember how clueless you felt when you first became a parent? Try to use that as an analogy now. You will gain the confidence that comes with experience every day, and autism won’t always be new and surprising to you. If you keep a journal, it will be easier for you to look back a year from now (or even a month from now) and see how far you and your child have come. It may also be a good outlet for you.

In the meantime, if you don’t listen to me about anything else, please believe this: it won’t always be as hard as it is right now. Sometimes it gets better, sometimes it gets worse (okay, even a lot worse sometimes), but the newness and the shock will wear off, and you are stronger than you think. When I am tempted to curl up in the fetal position with my thumb in my mouth, I quote Joan of Arc to myself: “I am not afraid; I was born to do this.” Sometimes, I even use a French accent to make it more convincing.

2. Reach out for useful information. Having a diagnosis can be useful because it points you in the direction of help. There are autism support groups in every city and in most small towns. There are even Special Needs PTA’s in some schools. The internet can be a wonderful resource. Autism Speaks www.autismspeaks.org has a 100 Day Kit that is an amazing starting point for the first 100 days after diagnosis. http://www.autismspeaks.org/family-services/tool-kits/100-day-kit In no time at all, you won’t be suffering from a lack of information; you’ll be wishing that you had enough time to sort through all of the information that is available to you.

Jomphong / FreeDigitalPhotos.net

As you sift, you are going to become the expert on your child’s condition. Actually, guess what? You already are! Fortunately and unfortunately, every kid on the spectrum is a little bit different. You are your child’s first and best advocate, and your child is watching you and learning how to be a self-advocate. Don’t be afraid to stand up for yourself either—or to appreciate the wonderful doctors, therapists, and teachers who can light the path for you. I am so grateful that Dr. DeOrnellas gave us useful help from the very first time we met, and that she made it clear from the outset that she respected us as the parents and that she liked our child. Yes, it’s true, and I can’t stress this enough. There were times I joked that we came to see her just so someone would tell us that we were doing a good job that week. You, the parent, are the one who has the most opportunity—and, frankly, the obligation—to help your child for the largest amount of time each day, week and month, and time is precious. By the time you are in the office of a professional, you have already seen a lot and been through a lot. If you aren’t getting useful insights and practical help within the first few sessions, consider looking elsewhere. If you and your child aren’t comfortable with a professional, it doesn’t matter how many credentials he has; he may be a help for some other family, but he isn’t a good fit for your family.

3. Take it one step at a time. If you are working with your child’s school or therapist, they are going to have recommendations about what to approach first. Safety issues are paramount. If your child tends to run away (the professionals call it elopement, but there’s nothing romantic about it), self-injure, be aggressive to others, or eat things that aren’t food (that’s called pica), containment and eventual modification of those behaviors is going to take precedence over attention-getting stuff like spinning, hand-flapping, meltdowns, or reluctance to potty-train. Help is going to be available for all of these things, and you will step through each door with more confidence as you go.

jscreationzs / FreeDigitalPhotos.net

4. Take care of yourself. Remember the last time you were on an airplane and the flight attendant told you to put on your own mask first? Think of your current situation as a loss of cabin pressure. You are mobilizing while experiencing a combination of shock and grief (with gusts of exhaustion), so give yourself a break. Truly. Reaching out for friendship and support is at least as important as reaching out for information.

graur codrin / FreeDigitalPhotos.net

At first, your life may seem like it’s being consumed with therapies, IEP’s and stress. It doesn’t have to feel that way. If you have supportive friends, family, and babysitters, now is the time to ask for help. If you don’t, now is the time to reach out and find them. If you’re shaking your head right now, I understand. When our daughter was in the midst of the behaviors that led to her eventual diagnosis, we lost friends AND babysitters. There are people out there – plenty of them -- who will be willing to help if you ask.

And while you’re reaching out, don’t stop reaching out to your child. Even if your child doesn’t want a hug – maybe he isn’t a fan of being touched -- don’t lose hope. Get hugs where you can, and know that you can work on your child’s aversion to touch and make progress with that too. In the meantime, you will want to be gentle to yourself. Getting extra sleep will do you a world of good. If your mom is willing to spend an afternoon at your house with the kids while you go to her house and sleep, go for it.
Photo Credit: Carl Fields

5. Dance in your kitchen. Not a dancer? Well, whatever you do to be silly & make yourself smile, it’s time to do it. Knock-knock jokes? Hey, if they work, don’t knock ‘em. Laughter is great medicine & so are hugs -- with your child, your spouse & anyone else who will join you. Getting a diagnosis isn’t the end of your life, or your child’s. One of my current favorite bloggers is Cyn Huddleston, an adult on the autism spectrum, who has a great way of putting autism into perspective: she says it isn’t a tragedy; it’s a trajectory. There are a lot of us on this trajectory with you & it’s an honor to meet you.

Jars by Lisa

2011-10-26T17:33:00.018-05:00

I started on a whim a few years ago by making holiday decorations for my own personal use. Til one year my DH suggested I try to sell them, I went from making them for me, to selling to friends & family. It was good for extra cash around the holidays but, being the stay at home mom that I am, in the failing economy, I decided I either needed to go bigger with my jars or find work outside of the home.

I was still really slow getting started but got a big push when we found out this year we were losing our home. I jumped on Facebook and wrestled with a name and Jars By Lisa was created. The last few years was devoted to just making jars for the big holidays, Halloween, Christmas, Valentines day. But then it dawned on me that I could be making Autism awareness jars! I searched high and low for puzzle piece themed stickers or paper punches, anything that I could find and put on a jar to create the look. But my searches always came up with nothing, I ventured into Michael's Arts n Crafts it was always my muse, I could walk into that store and get lost in all the things I wanted to do or make. But even Michael's had nothing for me, it was hard realizing yet again I live in a world where Autism isn't on the forefront of everyone's mind. It got me a little dejected, but after speaking to one of the employees I had a new plan. Why not use real puzzles?!! My pack rat mind had a box at home filled with loose pieces from my own kids puzzles, I also then turned to my friends and fellow Autism moms from a group I'm in, to donate their old puzzles to me.

I love making my jars, I love knowing that they will be in someone's home for years to come. Being able to create something from nothing has become a passion!

~ Lisa

If you are interested in placing an order for the upcoming holiday, please click Jars by Lisa for more information! Thank YOU for your support...we look forward to hearing from you and helping you with

your purchase from Jars by Lisa!!

*Pssst! Don't forget to check out our NEW Giveaway!

One lucky person will WIN two (2) Jars by Lisa...be sure

to tell your friends about this spectacular giveaway!!

Bringing Awareness, Understanding and Acceptance Into Your Child's School

2011-10-21T14:32:00.001-05:00

     No matter what learning disability a child may have, a parent's main concern is for their child to be accepted by their peers. Our eight year old son, Nathan, has Asperger's Syndrome, a high-functioning form of autism. Academically, he is where he should be but, it is the challenge of adapting socially that Nathan struggles with daily. He encounters a child every once in a while that has learned to "push his buttons". No matter how much Nathan tries to block out the actions of the other child and things that are said towards him, he eventually loses control of the small world around him.
     This is why I became more involved in our elementary school after Nathan made it through half day kindergarten. His kindergarten teacher had willingly accompanied his Intervention Team Specialist and myself to a three part training in behavior of autism during that year. If it hadn't been for those two wonderful women, I wouldn't have been able to attend due to the requirement of having two educators as part of the team with a parent. It gave me unbelievable encouragement to know that my son had such understanding teachers guiding him at school. We collaborated daily on his behavior, his strengths and weaknesses in order to help him cope with his surroundings.
     During Nathan's kindergarten year the students were joined by their fourth grade Reading Buddies during a certain time each week. Out of appreciation for these understanding students that were reading with my son, I offered to read to their class once a week. I explained to their teacher about a book I had found written from the perspective of a twelve year old girl whose eight year old brother had autism. I was so ecstatic when he agreed to let me read about a disorder none of his students had probably even heard about! I knew it would help them understand him a little better and would hopefully instill awareness and tolerance for them to draw from as they met with him each week. The fourth grade class seemed to get a kick out of it when I would either accidentally, or purposely, use Nathan's name instead of the character, David, when reading the story to them. The book was written on a fourth grade level so there were very few words or phrases I had to change while reading it aloud to them. I really looked forward to reading to them each week because I have always wanted to write childrens' books myself.
     When Nathan started first grade, Nathan's kindergarten teacher had already spoken to his new teacher about the progress he had made the previous year and what we were still working with him on. She was very open to the idea of me coming into class once a week to read to Nathan's classmates. Even though I had to substitute more appropriate words in some places when I read aloud to the first graders, I was more comfortable reading to them than the older students. Every once in a while, I purposely used Nathan's name instead of David's to see if they were still listening. To reward Nathan's classmates for letting me come read to them, I brought them a small snack towards the end of my reading time. I went on field trips, helped with class parties and continued to make myself available to Nathan's teacher whenever Nathan was up against a challenge in his daily routine. The rest of the year I became a parent that most of the student's recognized as "Nathan's Mom" when they saw me in the halls, sometimes in my work uniform.
     Before, Nathan started second grade I had decided that I would become a substitute teacher for our public school system and I could choose to work mostly at our elementary school. Nathan did so much better when he knew I was around the school, or could "pop in" at any given time. I took a few assignments at the middle school, just around the corner, hoping that the elementary school would have something for me in the near future. After the elementary teachers had a chance to get to know me better, many of them were stopping me in the halls, or calling me, to ask me if I was able to substitute for them. Both of my boys but, especially Nathan seemed more secure, or at ease, when I was on the elementary school campus during the day. Unfortunately, I wasn't always able to wait for a substitute assignment at the elementary school. Nathan struggled through the rest of the school year but, I decided that certain things would need to change in order for Nathan to concentrate on his education. He shouldn't have to worry about being bullied, because he's different.
     The last day of school, the students are recognized at a school assembly for excelling in reading, their academic achievements and attendance. Before the assembly, the State PTA President joined our school Principal in a special PTA school meeting to promote the importance parents of getting involved in their child's school. I hadn't been feeling well and, after dropping the boys off at school, I had only stayed to see each of my boys recognized in their separate assemblies. Afterwards, I just wanted to go home, make myself a cup of tea, take my medicine and sleep until I had to pick up the boys from their last day of school. I really wanted to get more involved in the elementary school but, I decided that I would sign up when the new school year started in the fall. The school Principal had spotted me and was determined to make a change of her own by nominating me as the new PTA Treasurer for our elementary school. Before I knew what had happened, I had been elected as part of a new PTA counsel for the next two years! I stood before a crowded room of parents, grandparents and teachers wearing sweatpants, a hoodie over my t-shirt, no make up and my hair pulled up into a ponytail. I spoke briefly to them in how I looked forward to working with the parents, teachers and most importantly, the students during the next school year. I have learned that God works in mysterious ways and to not question but, to be open to changes. Besides, this could be an opportunity to bring autism awareness, understanding and acceptance to our elementary school making it possible for children like Nathan to co-exist without being bullied.
     We have been very impressed with Nathan's third grade teacher and how she has been working with him. She and his reading teacher have been communicating with his Intervention Team Specialist to provide Nathan with the best possible education and daily routine. I have read to his class three times after giving them a chance to ask me questions about autism and how it affects Nathan. It has given me what some might call "the once in a lifetime" chance to help my son's classmates understand and accept other students for who they are. I had noticed in Nathan's first grade class, once his classmates understand more about him, and how each of them was special in their own way, the students were more supportive and protective of him at school. That's what I want for Nathan and every student that gets to know him...to be understood, have awareness of each other and be accepted regardless of how different they might seem from anyone else. I look forward to every chance I have to read, help or do anything with the students at our elementary school. And I make sure the students know that I am not perfect and can make mistakes but, my goal is to learn something new, use my manners and help others when I can. It is important for students to understand they are individually special and can make a positive impact in each others lives.
     For anyone that might be interested, the title of the book I have been referring to is Rules by Cynthia Lord. It can be found in almost any public school library. Or you can buy a copy for yourself at a local bookstore or online.

Lorrie

Nathan's Voice & little o' Me Are Being Featured In a Guest Blog on Our Mom Spot!

2011-10-04T20:29:00.000-05:00

I can't tell you how excited I am to be featured on Our Mom Spot as a Guest Blogger! I wasn't quite sure about venturing outside my "comfort zone" especially since I just started blogging recently. Which made me consider the reason that I started blogging in the first place...to raise awareness!! I am sharing Bringing Awareness, Understanding and Acceptance Into Your Child's School as my Guest Blog post because it tells what I have been doing to help my eight year old son's classmates accept him, his disorder and other children with disabilities. I encourage YOU to check Our Mom Spot out!

Beans, Exercise, and Thinking Aspergers

2011-10-01T00:37:00.003-05:00

I would like to introduce our next Featured Guest Blogger, Lisa Gallegos of Seven Yuckmouths and Autism, in an effort to raise autism awareness and continue to provide a variety of information for our readers! I hope you will enjoy the post and check out her blog, as well as the rest of mine!!
Lorrie

I can't yet put into words how honestly messed up things have been lately. My ability to maintain control is the only thing that hasn't set me off the deep end yet. But I have been able to see the good in the storm, don't ask me how I do it but I do. Part of it has to do with the fact that their are eight other people in this house who count on me to drag my happy self out of bed everyday and keep moving regardless of how I feel so I do. So on to other things for now.

Beans

Racer is obsessed with fruit, its the one thing I can get him to eat any time any day. But beans (seeds) stand in our way. Thanks to a well meaning comment from my 7yr old he thinks if you eat the seeds from any fruit it will start growing inside of you. But because of how Racer thinks not only can he not eat beans but no one else can either....I mean God forbid that one of us grows into a apple! So that leads me to today when Racer and the daddy partake in a afternoon snack of apples. Now Racer will carefully eat the whole top of the apple without the "wet" part touching his fingers, he will eat it down to the core and never expose the beans. The daddy on the other hand must not have heard the "beans story" and ate his apple into the core. Now its not like during this whole time Racer isn't warning him insisting he not eat the beans....with my 7yr old shouting from the bedroom about turning into a apple tree, and me trying to hush everyone. It was like a shouting match for WWE I swear, lol and people outside must think we are insane. Anyways what did the daddy do?!! He ate the freaking beans! After Racer warned him not to over and over again, not sure if at this point in Racers mind he's in high alert to see if daddy turns into a tree so we'll see.

Exercise

So the hubs has been all about getting back into shape....good for him right? He goes walking everyday and then comes home and does jumping jacks and push ups. I'm really proud of him because we are not a great will power kind of family. I'd much rather be doing anything but working out lol. The funny part about this is that the girls...CareBear and PigPen have been doing jumping jacks and push ups with him. lol mostly just bouncing and some jumping and then late clapping but its cute and funny as "h-e-double hockey sticks". The push ups on the other hand are a weird form of PigPen with her butt in the air and putting her face close to the floor and CareBear sitting and kissing the floor. lol I want in on CareBears exercise plans seems easy enough right? But great for the hubs to be working out!! *high fives and slaps on the rear!*

Thinking Aspergers

Now I've fought with my paranoia for long enough, sat thinking about how others would perceive me if I even suggested that I thought for a second that PigPen might have Aspergers. But the more I look at it and watch it the more it looks just like it. For the longest time I thought maybe she was just copying Racer or attention seeking but its so much more than that. So we are going to try and get her tested, but going on my gut on this on this one its Aspergers.

- Racers Mommy
Friday, May 13, 2011

Why Autism Awareness is broken

2011-09-17T19:13:00.007-05:00

After reading this post on "Autism Today" by Lost and Tired, I felt obligated to share this with my readers. I am certainly guilty of "sugar-coating" how things were with Nathan before and around the time he was diagnosed and that really doesn't help anyone understand what us parents go through!

Lorrie

Problem’s with Autism Awareness

I have been wanting to write this for a while but honestly it seemed to exhausting to do. This has been eating away at me and I need to just get this off my chest and move on. I’m not sure how this will turn out but I want to make a few things very clear as to avoid any misinterpretation. Everyone’s problems are relative and I get that.

I am by NO MEANS trying to belittle anyones personal experience with Autism and its impact in their lives. Now with that said, there are some things I need to say.

Autism and my family

I’m the father of 3 Autistic boys. My boys are each in different places on the spectrum (ranging from low functioning to high functioning) so I have very unique experience and perspective that most don’t have.

Gavin and Elliott are our Aspergers kids. Gavin is “functioning” but not “high functioning”. He also has a host of other mental health issues, most notably schizoeffective disorder. Elliott is our middle child and is “very high functioning”. Most people unfamiliar with what Aspergers actually is, would not know that Elliott has any problems but he does. His issues mostly revolve around anxiety. Gavin will most likely never be able to function independently without supervision. Elliott should be quiet successful in life, as he is more enhanced by Autism then hampered.

Emmett is our youngest and he is Autistic. He is “low functioning” and significantly developmentally delayed. He is pre-verbal meaning he does have a few words but little to no language skills. He was believed to be non-verbal but has picked up a few words so pre-verbal is more accurate. He is violent and aggressive but sweet and beautiful. Emmett is EASILY the MOST DIFFICULT challenge I have ever faced….

My wife and I have been walking this journey for 10 years together so far. I have become an expert (as much as possible) on my children’s disorders….and yes they are disorders. So I do have some knowledge and experience in this area.

Autism Awareness in it’s current form

There has been a lot of debate over whether or not Autism Awareness is effective. I would argue that currently it’s not effective but not for the reasons people think. Many people will say that society just doesn’t care. While that may be PARTIALLY true I don’t think that’s the problem.. There is a fracture within the Autism community itself.

We have parent’s with Aspergers kids (like myself) saying things like “Autism does not define my child”. Then we have parents of much lower functioning kids (again like myself) that don’t say much at all because we are just to exhausted, beaten down and demoralized.

Now, I’m going to say this knowing full well how it’s going to sound but I think it NEEDS to be discussed.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, it’s even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.

Again, I can say this as I am personally doing both. I have NO experience in raising a truly non-verbal Autistic child and I can’t even imagine how difficult that is.

This is the problem in my opinion. All we really ever hear are the “fluff” pieces about Aspergers from parents and large organizations. Honestly, they aren’t wrong because many of these kids will grow up to be successful or at least independent and God bless them for that. However, the problem is these examples become the public image for Autism and these parents its voice. It just doesn’t portray Autism in an accurate light and it sends the a less then accurate message.

Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.

I mean no disrespect by this at all. I just see things from both sides. For my part, I assumed that the experience I gained raising Gavin and Elliott would prepare me for Emmett but I couldn’t have been more wrong… I could not believe how infinitely more difficult it was with Emmett and that’s after 9 years of raising Gavin, who breaks the mold in just about all areas. Honestly, it’s a night and day difference.

How can we expect Autism Awareness?

How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.

We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?

The follow up to Why Autism Awareness is broken can be found here: How we can fix Autism Awareness

- Lost and Tired

What is Autism?

2011-09-15T21:21:00.009-05:00

I have asked our Featured Guest Blogger, Rob Gorski of Lost an Tired @Lost_and_Tired, for permission to post this article because the Oklahoma Walk Now For Autism Speaks in my area is on Saturday, September 17, 2011 @ the East Wharf of Lake Hefner in Oklahoma City. The following post has been taken in whole, as it has been posted on his blog.

Lorrie

What is Autism?

This is directly from Autism Speaks (The original link can be found here)

What is Autism?

Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.

How common is Autism?

Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism.

What causes Autism?

The simple answer is we don’t know. The vast majority of cases of autism are idiopathic, which means the cause is unknown.

The more complex answer is that just as there are different levels of severity and combinations of symptoms in autism, there are probably multiple causes. The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors. Timing of exposure during the child’s development (before, during or after birth) may also play a role in the development or final presentation of the disorder.

A small number of cases can be linked to genetic disorders such as Fragile X, Tuberous Sclerosis, and Angelman’s Syndrome, as well as exposure to environmental agents such as infectious ones (maternal rubella or cytomegalovirus) or chemical ones (thalidomide or valproate) during pregnancy.

There is a growing interest among researchers about the role of the functions and regulation of the immune system in autism – both within the body and the brain. Piecemeal evidence over the past 30 years suggests that autism may involve inflammation in the central nervous system. There is also emerging evidence from animal studies that illustrates how the immune system can influence behaviors related to autism. Autism Speaks is working to extend awareness and investigation of potential immunological issues to researchers outside the field of autism as well as those within the autism research community.

While the definitive cause (or causes) of autism is not yet clear, it is clear that it is not caused by bad parenting. Dr. Leo Kanner, the psychiatrist who first described autism as a unique condition in 1943, believed that it was caused by cold, unloving mothers. Bruno Bettelheim, a renowned professor of child development perpetuated this misinterpretation of autism. Their promotion of the idea that unloving mothers caused their children’s autism created a generation of parents who carried the tremendous burden of guilt for their children’s disability.

In the 1960s and 70s, Dr. Bernard Rimland, the father of a son with autism, who later founded the Autism Society of America and the Autism Research Institute, helped the medical community understand that autism is not caused by cold parents but rather is a biological disorder.

posted by Lost and Tired

My Broken Heart

2011-09-02T18:06:00.004-05:00

I have the distinct honor of introducing our 1st Guest Blogger, Rob Gorski of Lost and Tired, in an effort to raise autism awareness and, of course, give everyone something else to read besides what I write! The following is taken in full context, as not to leave anything out.

                                                                                            Lorrie
                                                                                            Nathan's Voice

To my readers:
The story in the below post happened to me on February 22, 2011. This event has forever changed my life. Please help me share it. This is why we desperately need Autism Awareness. Thank you for reading and helping me share my story…
-LT

It’s been a few days since I have spoken with all of you. Something happened to me a few days ago that I have been struggling to deal with it. I hope you all truly hear what I’m about to share with you. I want everyone to read this and know what happened. Not because of what I did but because of what I learned… Please share this story and help spread awareness.

A few days ago I went to Giant Eagle to pick up some groceries. We had a winter storm on the way and I needed to pick up a few things in case we got snowed in again. I pulled into the parking lot and found a spot right in front of the entrance. My back is out again so I can’t walk very far. As I was pulling into the spot I had to wait for some people to move out the way. They were just standing in the parking spot. Their car was in the next spot over but they just stood there and shot me a few dirty looks, like “who was I to expect them to move”. I just waited, it wasn’t a big deal. I wasn’t even upset. They eventually started to get into their car and moved out of the way so I could pull in.

The snow had already started to fall and we were getting about 1″ per hour. I sat there a second collecting what I needed to take into the store. I just happened to look over at the people that were still getting into their car and I saw a large black man standing there. I didn’t see where he came from but in one minute he wasn’t there and the next minute he was. Then I realized what he was doing. He was wiping the snow and ice off their windshield with his bare hands. The woman looked at him, like, “how dare you touch my car”.

She was clearly disgusted just breathing the same air. Instead of asking him to stop or giving him a few dollars she tried to run him down. She gunned the car forward so fast that her friend who was trying to get into the back seat had the back passenger door slammed on him and he was left standing in the snow. The man who had been trying to clean the windshield was knocked back. This woman just kept shouting things to the man with the bare hands.

Hands_by_rE_Fuuused

I was in shock. I had never seen anything like that before and I never want to again. A few seconds later the man gets up and walks over to me and knocks on my window. I hadn’t even begun to process what I had just seen. Now he was coming over to me and I had no idea what I was going to say. Shamefully, I was thinking “please not now, I just want to get what I need and get home”. Where I live it’s not uncommon for people to approach you for money. So I knew what was probably about to happen. I took a deep breath and started to open the door. The bare handed man opened it the rest of the way, being careful not to hit the car next to me.

The bare handed man was under dressed for the weather and obviously cold. He asked me for change. I gave him everything I had, $2.37. He started talking to me but couldn’t look me in the eye. As he was telling me how cold and hungry he was, I watched as he was unable to control his hands. It was like he was playing an invisible piano. He had a very hard time talking to me and I could see he was much more uncomfortable then I was. He clearly had boundary issues but I never felt threatened in any way. He kept staring off and would occasionally look in my direction but never at me and I never saw his eyes. He stood about 1 or 2 feet in front of me and asked me to drive him to a shelter because it’s “warm there and they have food”. He informed me that he was “homeless and very hungry”. He then told me that he “was not lying to me”. He said “if I lie to you then you might not help me”. He asked me to buy him some food and gloves. I thought about what to say. I knew he would have hard time understanding. I don’t have any money. My family is struggling to survive each day. I would literally be taking away from what little my family has and I just couldn’t. I was trying to figure out how to explain to him that I couldn’t help him. I was lost for words.

Then something happened that shook me to the core and completely broke my heart. As I was trying to form the words I needed to tell him “no”, he looked me in the eyes. All of the sudden I was looking at Gavin. Gavin is the oldest of our three special needs boys (all Autistic). Gavin is 11 years old and is also diagnosed with schizoaffective disorder as well. Looking at the bare handed man was looking through some special window at my son Gavin, 20 or 30 years from now. It was a kick in gut. I was overcome with emotion. It was like I was run over by a freight train. I can’t put words together to really describe what that moment was like.

He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar and yet I’d never met him before. I looked at him and told him I would buy him some food. He smiled in my direction and took my hand (without looking at me) and led me into the store. He didn’t fit in with the rest of the people in there. His clothes were old, beat up and didn’t smell very good. He had clearly been through a great deal in his life and it showed in his face. I noticed the looks people gave me as I walked with the bare handed man into the grocery store. He asked me to buy him a gift card so he could buy food later on when he is hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. He asked for other ones but I just couldn’t. We went to the register to ring it up and I explained how to use it. I put $25 on the gift card and the cashier asked if I wanted any cash back. I had them give me $25 cash back. I gave it to the bare handed man and asked him to please buy himself some gloves and a bus ride to the shelter. The last thing he asked was to have the receipt so “when the police stop me, I can prove I didn’t steal this”.

He told me again that he wasn’t lying. I told him I knew he wasn’t. He turned to walk away and he stopped and looked in my direction as to say “Thank You” but didn’t. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I stood there completely heartbroken as I watched my son Gavin walking away into the cold. I was beside myself with grief. How could someone I didn’t know have such a profound effect on me?

I just couldn’t shake just how much the bare handed man reminded me of Gavin. I tried to finish the shopping I had to do but I couldn’t remember anything I was supposed to get. I walked up and down the aisles on “autopilot” doing everything I could not to burst into tears. I got to the end of the store and realized I still had an empty cart. All I could think was “how does that happen”. I was smacked in the face with reality. Someday I won’t be here to take care of my kids. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost getting run over by someone who clearly doesn’t care.

I screwed up grocery shopping. I just couldn’t focus on anything. I got what I could remember with what little I had left and drove home. I was completely lost at that point. I just couldn’t process what had just happened. All I could think about was not allowing this to happen to my kids in the future. The horrifying truth is that someday I won’t be here for my kids and I pray they are never in that same situation. I truly hope that if they are, someone will show them kindness and compassion. These are my babies and I get sick to my stomach thinking about what their future holds.

I got home and unloaded the groceries and was in the kitchen with Lizze. I wasn’t going to say anything to her about it but I had to because we already were struggling and now things were going to be even tighter and she deserved to know why. I looked her in the eyes and told her what had happened. I just sobbed and sobbed on the floor in my kitchen. I couldn’t control myself or keep my emotions in check. That has only ever happened to me when I watched Lizze give birth to our kids. The past few days have been rough because I just can’t seem to get past this. All I can think about is my kids and their future. My heart has been broken and I live with the reality that this could be one or more of my kids in the future.

This has been very difficult for me to write. I’m still very emotional. Most parents will never know this fear but I do. Parents of special needs kids live with this indescribable fear each and every day. I wanted to share this story because we CANNOT allow this to happen to our kids. Please help me spread Autism Awareness. I don’t care what it takes but the world needs to be better. These people NEED compassion and understanding. My kids need your compassion and understanding… Please give them that much, I beg you….

- Lost and Tired
February 24, 2011

CONGRATULATIONS to the 1st 'Rafflecopter' WINNER, Rob Gorski of "Lost and Tired", in our Autism Pendant Prizepack GIVEAWAY!!

2011-08-07T00:00:00.033-05:00

I have been waiting for the chance to be able to use the Rafflecopter on "Nathan's Voice" for our giveaways...
and now that it's here, I am speechless that NOT SO MANY PEOPLE HAVE ENTERED!!

If you haven't had the opportunity to use the Rafflecopter in a giveaway, it is EASY and YOU will want to get it for your blog immediately!! Just follow each step below and you will be entered for additional entries in no time at all!
YOU don't have to donate to enter....it's FREE to enter the giveaway!!! ~Lorrie

The "Drive For Autism" is just around the corner and our Team "Nathan's Voice" wants to support the Oklahoma Family Center for Autism in its efforts to provide educational grants, support research and outreach to Oklahoma families with loved ones on the autism spectrum. Thank YOU for your prayers and support as we "pay it forward"!

All Is Calm in "GABA Land"

2011-07-23T23:00:00.004-05:00

     First, I want to apologize to those of you whom have been patiently waiting for an update on how the over-the-counter supplement GABA, gamma aminobutyric acid, has been working for Nathan. Secondly, I am only a parent of a child with an autism spectrum disorder, I am not an expert or physician. Every child is different and you need to check with your child's doctor, before starting them on anything new, to check on dosage, possible side-effects and the interaction with any other prescribed or un-prescribed medications your child may be taking. Whether it is an allergy medicine or any other "otc" products, there might be some ingredients that if mixed, your doctor might warn against because of negative reactions for your child. It is always best to make absolutely sure that you both are in agreement for what you are giving your child and what results you expect from it.
     If you have not had a chance to read my previous post titled "A Change In Over-The-Counter Supplements", let me summarize the situation to help you catch up. My youngest son, Nathan, who is eight years old is on the autism spectrum. He was diagnosed almost three and a half years ago with autism. He had been taking an "otc" supplement for his attention deficit called Attend mini's by VAXA for about one and a half years when we added another "otc" supplement, for his "mood swings", called Behavior Balance by Food Science of Vermont. My husband and I had been researching several other supplements in hopes of helping our son cope with the daily struggles of this neurological disorder and came across one that looked promising and would cut down on the number of pills Nathan would take each day. This "otc" supplement is called gamma aminobutyric acid, or GABA for short. It was said that this supplement would help calm an individual so that they could get a better night's sleep, awake refreshed and handle the next day better. Last month, I timidly presented our research to our family physician about GABA and asked him what he thought about the benefits it could bring to our son. He said that what he knew of that particular "otc" supplement and that it was worth trying if it would help Nathan feel more calm and in control.
     Nathan has been taking the "otc" supplement GABA for just a little over a month now. He is sleeping much better and is taking only one peppermint flavored GABA at bedtime versus the six Attend mini's and four Behavior Balance he was taking daily. It was quite a difference getting Nathan to accept that he only needed to let this one little pepermint flavored GABA dissolve under his tongue before he went to bed every night. The first few days, he kept asking his father and I if we were sure that he didn't need his other supplements. Once he got used to the fact that those were gone, he seemed relieved that he only had that one supplement to remember to take.
     I know that there isn't a known cure, or even an exact known cause, for autism but, from our just over 30 days of Nathan having taken the "otc" supplement GABA, he has fallen asleep faster, slept through the night and awoken happy. This helps him to cope, with any changes or disruptions that might try to "shake" his daily routine, better than he had before. Now, all that I ask is that you remember that I am sharing this information, not as an expert but, as a parent of an eight year old boy on the autism spectrum. What works for one person may not work the same for another and you still need to check with your child's physician before starting them on something new. I say this because our children are precious. Your child's physician needs to be involved with and be aware of what is being given to your child because of dosage, possible side-effects or allergic reactions. When it comes to protecting our children, this is just a precaution that we have to consider.
     Our son, Nathan, is doing especially well with the "otc" supplement GABA. My husband and I are always watching for any signs that Nathan might be reacting negatively to the supplement. We want to have faith that this will continue to help him, even as he gets older and we have to adjust his dosage accordingly. If there are any changes in Nathan that may be related to the use of the "otc" supplement GABA I will openly share those with you, whether they are negative or positive. I thank the Lord every day that he gave our family Nathan and his extremely patient older brother, Vincent. We are also blessed with a wonderful extended family, a very understanding church and the most generous friends anyone could ever wish for! Many thanks to each and every one of you that pray for our family's strength, patience and wisdom in our daily journey through the very important land of autism.

My Son Has an Autism Spectrum Disorder and I Consider Myself Fortunate

2011-07-16T21:24:00.000-05:00

     If you were to walk past my son in a crowd, most likely you wouldn't know he had autism. He is high functioning and right where he needs to be academically but, he still struggles with appropriate social behavior in unfamiliar situations. Just a little over 3 years ago, he couldn't leave the house without getting frustrated, screaming & hitting himself. Trying to go inside any store (ie grocery, pharmacy, etc.) was a nightmare waiting to happen. And if we made it past the entrance into the opening of a particular store, we had to make every minute count! No living carefree, without a "mission" or flying by the seat of our pants...if we were to survive the "meltdowns" we would have to have a plan!! So, I started explaining, every step of the way, to our son what we needed to do and what he would be rewarded with if we could accomplish that small task. Now, this was about 1 year before he was diagnosed with autism and we had been agonizing through this phase for close to 2 years already. Who would believe that by tackling something as small as getting him to agree to be "your special assistant" at the grocery store, to distract him from whatever it was that bothered him, would benefit you, him and EVERYONE around him?!? And when we actually received an official diagnosis that he had an autism spectrum disorder, it was tough at first to hear the words but, it explained a lot of the questions we hadn't been able to answer for a long time.
     No one knows exactly what causes autism. It could be a number of factors including those currently being researched such as genes, environment, vaccines, drugs given to pregnant mothers to keep them from going into labor too early, etc. What we do know is that the statistics show the number of children affected by ASD are increasing dramatically. In 1999, it was 1 in every 10,000 children that was diagnosed with autism. When our son was diagnosed a little over 3 years ago, it was 1 in every 150 children. The last I heard, it was 1 in every 110 children. Those devastating figures also tell us that 1 in every 70 are boys and that every 20 minutes a parent is told that their child is on the autism spectrum. I was one of those parents and I am here to tell you that it is not the end of the world!
     I am not an expert but, I am most willing to share our family's experiences, if there is someone out there struggling somewhat similiar to how we used to. Not every child or circumstance is the same...don't let that voice inside you convince you that you are a failure as a parent! There are informational resources out there but, most importantly, be willing to ask for help from family and friends. Everyone needs "me time" or a few minutes to ourselves, whether it's a trip to the store alone or time to read that book that you have been wanting to read since Christmas. I started something I refer to as "putting myself in time out"...it helped me. After a while, my son started to realize that no one is perfect and told me that he enjoyed quiet time. That was another learning experience for me. Whenever he started getting frustrated, I made sure that we had a place for him to calm down away from the situation he had just been in. If I can learn atleast one thing each and every day, I consider myself a millionaire!
     If you are still reading what I intended to be a short post, I appreciate the time you have taken to do so. It means a lot that I was able to keep your interest. Please feel free to leave me a comment. Again I apologize for writing a novel! ((hugs))

Having Children Means There's Never a Dull Moment To Be Found

2011-07-12T02:26:00.001-05:00

     My husband and I were excited about being able to get out of the house this last Saturday night and together with our friends. They had invited us over for dinner and to catch up on what's been happening since we aren't able to get together very often. We had gotten the boys' DSi handheld games charged up, packed the kid-friendly drinks on ice and gone through the "behave or we come back home" speech with both Vincent and Nathan before we headed out that afternoon.
     Dinner and spending time with our friends was great. The boys were running around out back burning off some of that energy they always seem to have. We had sent them outside because they had been throwing the dog's toys around inside the house to tease our friends' dog. It was what happened next that sent our "relaxing night out of the house" spinning until it landed up-side-down. Our almost 10yr old, Vincent, came running in telling us that Nathan had gotten hurt bad. Nathan was right behind him, trying very hard not to cry from the pain. He had torn his left leg open, just below his knee, on a nail sticking up on our friends' deck. Our friends flew into action by grabbing us a clean towel for my husband to wrap around Nathan's leg, offered to keep Vincent for us, while I grabbed my purse and rushed us to the hospital just around the corner.
     Nathan proved that he was maturing by how calm he stayed. A lot of the credit goes to my husband and what a great father he is to both of our boys. That night, he was our hero! He was there, when it mattered the most, to show Nathan how a man takes care of his family. No one had to tell him to "man up" or "grow a spine" like some women wish they could but, instead choose to pull the weight of both parents. I am proud to say that my boys have a proper role model in their father.
     Our injured "dare-devil" ended up receiving 6 stitches and a tetnus shot before all the excitement was over. Nathan didn't even cry as the doctor was administering the pain medicine to the immediate area before stitching him up or when the nurse gave him the tetnus shot, which he said felt like a mosquito bite! It didn't matter how much he had scared us by getting injured, only that we had something to celebrate and that meant a stop at the pharmacy for children's motrin and the closest Braum's Ice Cream & Dairy on the way back to our friends' house to pick up Vincent! lol After getting everyone home, changed for bed and the boys tucked into bed for the night, it was almost 2 o'clock the next morning before Matt & I could stop thinking how different our evening had turned out from what we had imagined. We stayed home all day Sunday, after I ran to our favorite doughnut shop to pick up breakfast, relaxing from the night before.
     Nathan is doing well, he isn't showing any discomfort and he's not letting it slow him down. I am always asking him if it hurts or if he needs anything. Most of the time, he just tells me he's fine. With Nathan, you don't ask him again unless you want him to get mad at you for disturbing him. He will let you know if he needs something, something is wrong or if he acomplished a goal. He looked at me funny this morning when I explained that I was going to wrap his leg with a plastic bag to protect it so he could take a quick shower...after waiting 3 hours for his consent, I was able to mark that off as one of my few accomplishments for today! We are scheduled to return to the ER next Tuesday morning so that they can remove the stitches and check how it is healing. I think I will surprise the boys by taking them to ChuckECheese after we are finished. It's getting late and I had better get some sleep while I can...good night!

Lorrie

The Never-Ending Need to Protect and Prevent our Children from Wandering

2011-06-26T18:57:00.000-05:00

    Once upon a time, everything used to function at a much slower pace. We didn't have all the obligations that we have multi-tasked into existence. Now our days are slammed-packed full of schedules for work, school and all sorts of doctor's appointments. That's not counting the scheduled & unscheduled trips to the grocery store, pharmacy or health food store for our families. And it's so very easy for us to get distracted with the new technology that we use around the clock to communicate with each other. When you add in a child or adult with special needs, the chances of that individual wandering off increase dangerously.
     Wandering is not a subject to be taken lightly, by any means. It happens more often than just the particular instances we might hear about through the media, facebook or twitter. Every time I hear about a child wandering, it makes me check in on my own young children, sometimes more than once, during the night. I immediately start sharing as many details as I possibly can about the missing child on various networks while praying for the child's safe return to their family.
     Seriously, children and adults with the autism spectrum disorder are twice as likely to wander off, succumb to prolonged exposure and probable drowning. Individuals with ASD tend to wander because they are either looking to get closer to something of interest or away from something that is bothering them. A few examples of places they might be drawn to could be a neighbor's pool, signs they might possibly recognize that leads to a local amusement park or somewhere they have happy memories of spending time. Danger is constantly lurking around the corner, just waiting for victims.
     Everyone loves family picnics or gatherings at the lake but, many times a child on the spectrum may want to escape an overload of sensory input or something that is agitating them. It is automatically assumed, that with all the people around, that the child or adult with autism would be safe. Clearly, it is impossible to guarantee that an unforeseen distraction won't provide the opportunity to an over-stimulated child or adult on the autism spectrum to wander off without notice. Wandering in children & adults with autism tends to increase in new, unfamiliar or unsecured environments such as visiting a friend's or relative's home. These situatons may trigger wandering, as well as episodes of distress, meltdowns or certain anxieties in a child, or adult, with autism. Especially in warmer months, when it's natural to be and play outside.
     In dealing with our son, we have found that having a particular person with him at all times works the best. It's like being on an assignment with the secret service, you're not allowed to leave your post until you have secured a replacement. That way there's never a question as to where he is. Most of the time, Nathan is right beside me, holding my hand, or at least within arms reach of one of us. If we are at home, he may be in his own room but, the front and backdoor deadbolts are always locked and I am constantly aware of what he is doing. His room is the one place where he can relax and have control of his surroundings.
     I can't say that Nathan hasn't ever given us a scare. Almost four years ago, my daughter and oldest son had just spent the afternoon swimming in our above ground pool but, had forgotten to remove the ladder when they were finished. We had just walked around the corner to the side garage door for a few seconds when we heard that "splash"! Nathan had decided that he didn't want to wait until Daddy came home when we said he could swim. I have always had a rule where I would never take Vincent & Nathan swimming by myself, especially before they had learned to swim. Unfortunately, Nathan had already noticed the ladder and being way too young to understand how dangerous it was, had climbed up it, with his cardboard flip-book in his hand, and jumped in! I am so very thankful that we were nearby when Nathan decided to go swimming and that he had learned to tread water!! When his sister and I got to him, he had his head above water. He looked surprised at both what he had accomplished and that we were dragging him out of his impromptu dip in the pool. I hate to think what might have happened if we hadn't heard that "splash"and been able to pull him to safety when we did. That was an eye-opener for all of us that day. It didn't matter that the little cardboard book or the cell phone in my pocket had to be replaced, only that our precious 4 year old Nathan was alive!
     Another instance of Nathan wandering, that I was not a directly involved in, was while he was at his elementary school. Out of loyalty and respect of everyone at our school, I will not being sharing specifics. Nathan had been in one of the portables for his scheduled lab time and, when it was over, had wandered around to the front of the building. Nathan had been trusted to return to his class and had gotten distracted by the great outdoors. Thanks to one of the school secretaries, she found him standing on the grass, under a shade tree, twenty yards from the front door of the school. The experience was one that our school doesn't want to have happen ever again. It was very terrifying to even think of him trying to walk the mile and a half home or him being picked up by a stranger! When I found an opportunity later that afternoon, without any unwanted distractions, I explained to Nathan the danger of a child going off anywhere on their own without an adult.
     For more information about how we can protect our children, please feel free to visit http://www.awaare.org/. There are many resources on that website, as well others not mentioned, that can be utilized to prepare, prevent and protect a child that might wander. Have a safe and wonderful July 4th with your family.

Lorrie

A Change In Over-The-Counter Supplements

2011-06-16T22:18:00.012-05:00

     Nathan has been on an over-the-counter "otc" supplement for his attention deficit called Attend mini's by VAXA for close to three years now. It has worked well, with gradual increases over time, as he gained weight. About 18 months ago, he was having difficulty in 1st grade at school with negative behavior towards his teacher & classmates. After careful deliberation, we added another otc supplement called Behavior Balance by Food Science of Vermont to help with his mood swings. It helped Nathan as we had expected that it would, making Nathan's daily routine a lot smoother. His 1st grade teacher was working with him patiently & always made me feel welcome in the classroom. She and I would talk daily about any concerns she or I felt needed attention.
     That summer was full of family outings to the municipal water parks, the boys' favorite place ChuckECheese and trips to the AMC Theater for the Autism Society ~ Sensory Friendly Films for the monthly feature. Also, we have been able to go more places on the spur of the moment, and keep previously made plans with friends. It makes a big difference when our entire family can enjoy our outings without worrying whether Nathan can handle everything we encounter.
     Matt and I have been researching different supplements to help balance Nathan & reduce the number of pills he takes each day. Nathan has been quite a trooper when it comes to regimens, routines and rules but, he has always had an extreme difficulty at night "shutting down" everything that circulates in his brilliant mind so that he can get the sufficient amount of sleep needed to function properly the next day. Listening to positive & encouraging KLOVE radio christian music has helped Nathan relax & fall asleep at night for the last three years. It calms and gives him something to focus on besides the daily activities that he tends to reenact for his emotional understanding of what happened around him.
     The one "otc" supplement that we researched extensively is gamma aminobutyric acid. Commonly known to some as GABA, it is a natural tranquilizer and induces sleep and calmness. Yesterday, while at the doctor's office, I asked our family practitioner about the research Matt & I had done on GABA. Our doctor said he knew enough of the "otc" supplement and agreed that it was worth trying to see if Nathan would benefit from it. It is a good feeling knowing that our family practitioner will listen to our concerns, values what we take time to research and is working with us on Nathan's behalf! If this will help Nathan get a decent amount of sleep at night to be able to handle his daily tasks better, this will hopefully make a huge adjustment in how Nathan looks at his day and what he has to do. Our doctor helped me to decide what Nathan’s daily dosage should be since the GABA otc supplement is normally only intended for an adult. It will make quite a difference, not just in cost but, also in Nathan taking only one (1) peppermint flavored tablet that dissolves under the tongue versus taking the previous regimen of ten (10) pills daily between an attention deficit supplement and behavior supplement. Nathan started his new supplement yesterday evening just before bed. Even though he seemed to have slept soundly last night, I'm sure that it will take a reasonable amount of time for the supplement to make a noticible difference. Since Nathan just took his daily supplement before laying down earlier tonight, I am hoping that he will receive all the calming benefits it has to offer to get a good night's sleep. I am so happy to have a family physician that will take the time to listen to what I had to say concerning my son!  Thank God for even the smallest of miracles!!
     Nathan has matured exceptionally in the three years since he was diagnosed but, especially in the last six months. I am not an expert but, if I can help someone by sharing about the various obstacles that our son, Nathan, has conquered & how he is still making great progress to overcome this disorder...I consider that to be a double blessing!  I would be amiss to not give credit to our family, friends and most of all God for the strength & support to work with Nathan each day.

Lorrie

In The Beginning

2011-06-16T02:03:00.000-05:00

     When Nathan was first diagnosed with Autism he was almost 5 years old. That was almost three and half years ago but, in our eyes that was more than three years late. Right after his 18 month vaccinations, Nathan started showing symptoms of not responding to his name, wanting to go off to play with his toys by himself and using a very loud voice when he decided he wanted something. Unfortunately, we were confused with what we were seeing and the ever so frequent & consecutive ear infections he was experiencing. Nathan was barely two (2) years old when he had to have his 2nd set of ear tubes due to his 1st set of tubes falling out too soon. He had started having ear infections again. We had a good pediatrician but, it always seemed that whenever we brought up our concerns, he would excuse it away with "it's normal for his age to be distracted with what he's playing with" or "he'll outgrow it in time". We tried to accept his explanations but, deep down we definitely knew that there was something more we couldn't quite put our finger on.
     Nathan's brother, Vincent, had been doing well in PreK 2 and was a very attentive student in PreK 3 when Nathan was starting PreK 2 at the same private church school. Nathan was distracted easily, wasn't able to focus for more than 15 minutes at a time & would run around in circles laughing at everything that was said to him. He had a very understanding and patient teacher who would let me come in to help with arts and crafts to give her a break once in awhile. It was even more difficult when he started PreK 3 the next year. His teacher had her own little boy, that was younger than Nathan, in her class. It was a combination of her being a young mother, no teaching experience and having Nathan "performing" for the class constantly that made it difficult for that class to get anything accomplished. He spent a good percentage of his time in my classroom next door. I had just been hired 6 weeks after the school year had started to split the PreK 4 because the enrollment was over-whelming for the one teacher they had in place for that age group. I was estatic about being near both of my young boys during the day. Working with the 4 year old students was a bonus but, having Nathan in my class was a distraction when it came to the students trying to complete class assignments. I couldn't understand why she and a few other teachers were always telling me he was "bad" or that I needed to "discipline" him more. I was concerned that because he was different that they would hold it against him instead of trying to work with him. We barely made it through the remainder of the year.
     I tried to talk with my pediatrician about the way that Nathan was behaving but, he convinced me it was the ear infections that were his only trouble. The poor child had to have a 3rd set of ear tubes to allow his ears to function properly against the unruly seasonal allergies that he inherited from me. His older brother, Vincent, had just had to have his 1st set of ear tubes. I tried to believe what the pediatrician was saying to me but, something was telling me that there was more to why my son was re-acting to certain situations the way he did. There was a child with autism that went missing that Father's Day from the trailer park located next to our church. He was about Nathan's age and many of us church members were out searching for him in lieu of attending the Sunday morning church service. I did not know much of anything about autism except from watching a movie called Mercury Rising that I had watched almost 10 years ago. I did an internet search on autism and what I was reading made me start to cry. The missing boy was found safe later that day but, the concerns that I had expressed to the pediatrician were at the surface and stronger than ever.
     I was hitting my head against a brick wall with my son's pediatrician. He was a well trained professional in the medical field and had proven himself to our family repeatedly when it came to resolving the ear infections with both boys, as well as with Vincent when he needed to see a Urologist later that winter. What I couldn't quite understand was why my 4 year old son wasn't adjusting to school, or anything, like his brother. What was I doing wrong and what could I do to help him? He was actually getting worse. I sometimes couldn't take him into a store, regardless of the size or type of store, without him screaming and hitting himself. The looks and comments that we would get from people around us when he would start doing this was unsettling. It would range from "is your little boy okay, did he get hurt" almost in an accusing tone of voice to "you should really try to make your kid behave" like I was the type of parent to let my child do whatever they wanted with no regard to society. It made me mad that someone who didn't even know my family, or how different my son was from anyone they knew, could give me advice on my child! I knew very well that Nathan was like no other child that I had known but, I hadn't been able to figure him out.
     We tried PreK 4 the next year but, he spent most of time back and forth between my classroom and the office where his teacher would send him when he was "bad". I was having a hard time concentrating on my class knowing that my own child was suffering because he couldn't find his place in our world. I decided to give my notice of resignation so that I could spend the time needed to focus on getting Nathan whatever he needed. The school was far from understanding and made us find another school for our Kindergartener, Vincent. It was a difficult adjustment for our almost 6 year old son to change schools and make new friends but, he did quite well. While preparing for the holidays that fall, I spent a lot of time on the phone and the computer looking for answers to Nathan. I knew that our family needed to find out what we could about what was bothering Nathan so that we could help him and it needed to be quick! With him needing to be ready for Kindergarten in less than a year, it would take a miracle.
     I finally decided to contact our public school system Board of Education for any ideas on what I could do if I thought my son needed testing. They informed me that they could test him but, it would be sometime after the first of the upcoming year before they could get to him. That was better than what I had been able to get up to this point on my own. I just had to be patient and work with Nathan just like I had been all along. It gave me hope that we might finally have the answers we were looking for to help Nathan but, it seemed like the next two months took forever to pass. When it got here, the anticipation about did me in getting everyone ready for school and the appointment that morning. I was a bundle of raw nerves & had a side of "I don't know what" bouncing around holding my hand as we entered the Board of Education for our appointment that day. It would be safe to say that the wonderful people we met that day weren't quite sure what to think of this frazzled but, very protective mom and her young rambuctious son.
     At the first of three appointments, we were asked a lot of questions about how he acted, re-acted and behaved in general to certain situations. His eye sight was tested and when they brought Nathan back into the room, they said that the test was "inconclusive". They weren't sure what to make of it but, Nathan would definitely need to be checked by an eye doctor that specialized in the testing of young children before the Board of Education could finish their testing on him. I was so frustrated that all I wanted to do was cry! What was wrong with my baby? Surely he wasn't blind. He wasn't bumping into things or falling down. So, of course, I made the appointment to get Nathan's eyes checked immediately. After the optometrist was finished testing him, we found out that Nathan couldn't see up close or far away and the glasses lens that he needed were very thick, almost like the bottom of a soda bottle! That explained why he always came back frustrated when we would ask him to go get his shoes or bring something to us. He could barely see what was in front of him! I ordered the glasses before leaving the specialist's office and they told us that we would have them in about a week because they were being made special order for Nathan. Then, I called the Board of Education to let them know so we could set the next appointment to continue with Nathan's testing. It would be approximately 5 weeks before we would be able to start getting any answers. During that time I was given a form that Nathan's pediatrician needed to complete & fax back to the Board of Education. It asked questions of Nathan's behavior and what had been observed by the pediatrician. It was not completed, as requested, even with me dropping it off in person and checking back on its status each & every week prior to my next scheduled appointment for Nathan's testing with the Board of Education. This was the only reason that they turned us away and why we had to re-schedule for almost a month later. As Nathan and I were walking back to the car, the pediatrician's office called to say that the completed form had just been faxed, more than half an hour after our appoinment was scheduled for! By this time I was livid, my heart was racing & all I could think about when I looked into Nathan's eyes was that we were almost there...the answers were in our grasp and the wretched doctor had post-poned things but, we weren't going to let him win!!
     Our final appointment came and on that morning, we got ourselves ready for what we knew would be the beginning of a new journey as a family. We would finally have something to work with...an answer to what it was that made Nathan unique. I suspected it might be autism but, when I heard them say it aloud it was hard to accept. They explained that Nathan was extremely intelligent but, had problems with social skills & we would have to work with him. The individuals that evaluated him explained to me that he was "high-functioning" & that I should look up Asperger's Syndrome. It would better describe his disorder than just the generalized term of autism. I spent the rest of the day playing with Nathan until we picked up his brother, Vincent, from school. Then after dinner, I spent the entire evening researching on the internet. I was finding out that 1 in every 150 children were diagnosed with autism spectrum disorder, something like 1 out of every 70 boys were being diagnosed with autism and every 20 minutes a parent was being told that their precious child had autism! I eventually ended up back on a website called Autism Speaks, which offered a 100-day kit to those families with someone they loved recently diagnosed with autism. Even though it took several days, or longer in some cases, for our family and friends to come to emotional grips with Nathan's diagnosis, we had already started our journey to becoming a stronger family.

Lorrie

Nathan's 8th Birthday

2011-06-14T00:10:00.000-05:00

     Today, Nathan turned 8 years old! The boys spent the morning relaxing indoors and we watched a movie, Princess and the Frog, together before we went to pick up the cake. It's nice to be able to enjoy watching them grow up...I just wish it wasn't moving so fast!
     We took pizza and cake over to Grandma & Grandad's house this evening to celebrate Nathan's Birthday. He surprised us when he chose a baseball theme for his cake this year instead of one of the new movies that had come out recently. Afterwards, we joined our local autism friends for a night of bowling in a nearby city. It was a great relief to see how easily Nathan handles the "occasional" gutter ball or not being able to make a score as high as older his brother, Vincent. The meltdowns are not as frequent as they used to be and he's definitely maturing.
     All is quiet, for now, so I had better take advantage of the sleep I can get!

                                                                                                                                            Lorrie

Today is a step in a new direction

2011-06-11T22:24:00.000-05:00

Welcome to my brand new blog site!

This is all so new to me. I figure I had better start trying to catch up with today's technology and how everything works in the big world. I don't want to miss out on becoming a "blogger" because I'm still fooling around on facebook! lol <3 ;-)
I am planning to bring an accurate account of what is happening in Nathan's world as often as I possibly can. When I have any information, resources or anything that I can offer, I will post that, as well. If it helps anyone that has a child on the autism spectrum, or suspects they might have one, it will be well worth it. I hope that anyone that has information that they would be willing to share will feel comfortable enough to do so. Being new at this, I can use all the help I can get! I look forward to meeting anyone whom would like to leave me a note. Thank you for taking the time to stop by, have a relaxing drink, kick off your shoes & share helpful information with new autism friends!