Autism, Behavior and Our Children

     Autism is a disorder that affects 1 in 88 children, 1 in 54 boys and a child is diagnosed every 20 minutes. Autism impairs the development of a child's social behavior and communication, which means he or she will need the support of the people who love them. It is a journey that definitely is nothing like you would have ever imagined.

     My child has had a very difficult time when it comes to interacting with others. It is hard for him to accept that anyone else might have anything important to talk about. He has had plenty of problems at school, making or keeping friends and he has probably created an imaginary friend to make up for the lack of having any real friends. My child's teachers and I have been coaching him on how to listen to his friends, to try to remember something about what each of them likes and talk more with his friends about their favorite things. He has made wonderful progress over the past four years and, with daily encouragement, he continues to make an effort. 

     Another area that children with autism have trouble with is making eye contact with anyone. Our son would become extremely frustrated when we asked him to look at us, when we were talking to him. He would lash out at anyone who would try to console him, then, he would run out of the room screaming at the top of his lungs. It was very aggravating to watch my child as he struggled to communicate his wants and needs. During that particular time, he was overly obsessed with a red savings card from a local pharmacy and he would dig through my purse to find it. I creatively used it to help him focus on conversations, in school and on good behavior. He has improved remarkably and since graduated from that little red savings card to the intriguing world of collecting Pokemon trading cards. He eventually began to ask us for a trip to the store so he could have another package of Pokemon cards, in exchange for learning to self-regulate his behavior. It's an amazing feeling to realize the child that was diagnosed with autism has been replaced with an older, much more mature version. 

     If you asked my child what bothers him the most, he would tell you that it would be having his routine messed with. He has little patience with anyone that keeps him from his daily rituals. When he has homework after school, it is the only thing that is on his mind. If I need to go to the grocery store, I have prepared a list of the items, so that we can get them and get back home as quickly as possible. He complains the whole time, as I hurriedly pick up just the items I really need. My child does not handle disruptions in his routine very well. It's not as bad as it used to be. Anytime that we needed to go to the store, before and right after he was diagnosed, he would hit himself with both hands and scream. It was not easy for him to transition from one environment to another. Today, he may talk to himself but, it is not as embarrassing as it used to be. He understands, that if I don't go to the store once in a while, he won't have the things he wants like milk, chocolate syrup and shells 'n cheese. 

     I have learned that, even now, I have to watch how I say certain things around my child. He is very particular in how he is spoken to. The tone of my voice means everything to him. If he is irritated, misunderstands or feels threatened by anything said to him, you had better be ready! My child is a prime example of the saying "for every action, there is a re-action". Where he has the most problem with this is at school. If I am not present when something happens with, to, or around my child, I have to depend on his teachers to handle it, and in a way that they don't continue to upset him. Luckily, almost all of the teachers, that he comes in contact with, have experienced my child at his worst, and have learned when to remove him from the situation before he loses control.  

     Join us in April as we celebrate Autism Awareness Month to shine a bright light on Autism! Nathan's Voice will be sharing in an effort to raise Autism Awareness, Understanding and Acceptance in our communities, local and online. Feel free to browse our site and leave comments. Have a great weekend!

Why does nobody care?

Lauren is sharing another post from her blog AutismMumsDads with us as our Featured Guest Blogger in honour of the upcoming World Autism Awareness Day, April 2, 2012. Join us as we celebrate Autism Awareness Month the entire month of April! ~Lorrie

I really wanted to share with you all the fact that yesterday I was informed that my three and a half year old Autistic Son, who is non-verbal will be discharged from the Speech and Language Therapy Department, after NO therapy.

The reasons why haven’t been disclosed but I will be demanding answers as to why his speech therapist – and I use that term loosely, deems his speech & language satisfactory enough to not be pursuing any type of speech therapy.

Since A was diagnosed last July, we where told he had been put on the waiting list for Speech Therapy and due to his diagnosis he was a ‘priority case’ & we would hear back from them soon, this was the same time I was promised visual symbols to be sent through the post – needless to say I’m still waiting – wow their printer must be slow!

My son has a speech disorder due to his autism & early intervention is absolutely crucial to his future development. He is way behind in his speech and language when compared to his peers & this can only add to his already present communication impairments.

I have a strange feeling, I’ll be told its down to lack of funding in our area – its disgraceful and its not just happening to me. It seems ‘professionals’ don’t care unless its happening to them – and why would they? They aren’t the ones with a three year old son who is going to mainstream school in September with one spontaneous word in his vocabulary – and they bang on about giving our children the best start.

I have been lied to over and over again, why do we have to fight for everything for our children? Don’t we put up with enough already?

Many children with an ASD are delayed in their use of language and shy away from using speech. Therefore other methods of communication need to be established before speech and language will follow – is it too much to ask for some help or guidance as to what these methods are?

Why does nobody care?

Why is there a lack of funding for crucial interventions to be present for those children that need it to live their lives the best way possible?

I’m not the only one who is angry, upset and feeling let down. I have lots of friends – fellow Autism parents who are being let down with therapies or having to wait years for a diagnosis whilst their children are being labelled as ‘naughty’ its about time people stood up and became more aware and its about time people started caring for the lives of our children – they would if it was theirs!

Sorry for the rant but I had to get it out of my system, I and many others fight endlessly for our children and support is so important.

I’d also like to mention that I’ve had some wonderful support from friends on twitter who have given me some great advice – where would we be without people like this?

Any comments please feel free to leave them below.

L x

Little Boy, Big School.

I want to ask everyone to give a warm welcome to Lauren of AutismMumsDads! She is our Featured Guest Blogger in honour of the fast approaching World Autism Awareness Day, April 2, 2012. Please follow us as we celebrate Autism Awareness Month the entire month of April! ~Lorrie

Its 4 weeks, 6 days, 4 mins and 56 seconds (as I write this) until we find out which school from the ones we chose A will be attending, but whose counting?!

He only turns 4 in June, so he’ll be one of the youngest.

Its an anxious wait & I’m sure time seems to be going a lot slower than usual…

Due to the timing of A’s diagnosis along other factors which I spoke of in a previous blog ‘Mainstream or Special School?’ A will be attending a Mainstream setting – for how long is any ones guess.

So now I know he will definitely at least be trying Mainstream – my attention and worry is focused upon the amount of support he will receive, A needs full-time support and in our area 25 hours is the maximum. I’ve made it clear that if A doesn’t get full time support I will be home schooling him – I don’t want to but needs must be met.

A currently has full time support at his nursery so I’ll be shocked if he doesn’t get the same at school.

I worry of how he will cope at break and lunch times, as well as in class – he struggles to sit for any length of time and has a flitting attention.

I’ve had the idea of saying, ok 25 hours – I’ll only send him for 25 hours then – but I think it all depends on your area/Local authority as some parents I’ve spoken to their children have been allowed to minimize their school hours and work up to full-time hours.

I’ve heard so many bad things about Mainstream schools and their sheer ignorance towards children with Autism – the mainstream schools I have chosen for A are 1. The closest by. 2. Very academically driven – which worries me when it comes to A’s inclusion and well being.

So please don’t hold back and comment about your schooling experiences whether it be mainstream or special needs school….

Thanks 

L x

Join Us on The Coffee Klatch to Learn How to Show Your Support for Autism Awareness Month

Good morning, everyone! Join us this morning, Monday, March 19th at 9 a.m. EST The Coffee Klatch Tweetchat - Topic: April is Autism Awareness Month: How we each show support for the cause and support for each other. Returning guest, Lorrie Servati , who blogs at Nathan’s Voice,  joins Lorna. Lorrie is mom to 2 boys and the youngest has autism.

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

Spring Break 2012 at Camp DaKaNi

     Oh, the time we had this week during the day at Camp DaKaNi with our new friends! Camp Fire USA's Camp DaKaNi features activities such as hiking, fishing, rock climbing and canoeing along with natural science demonstrations during spring break sessions. My two youngest boys and the other campers also enjoyed the zipline and more!! No matter where you are, YOU can support your local Camp Fire U.S.A. chapter by volunteering some of your time. I was a volunteer this last week during G.O.T.C.H.A. which stands for the Great Outdoor Teaching Classroom Holiday Adventure. It is designed to continue the educational process through the holday break. GOTCHA has indoor and outdoor activities (weather permitting) that are fun and entertaining while providing educational curriculum. My boys & I had such a wonderful time that we are planning to return to Camp DaKaNi this summer for a new one week program called Camp C.A.N.O.E. which stands for Children with Autism Need Outdoor Experiences. We're so excited, especially after the great week we just had!

     Our local Camp Fire USA - Heart of Oklahoma Council offers great programs for children during Winter and Spring Breaks, besides the Summer Programs that are available. Please check with Camp Fire U.S.A. to see what programs are available in your area. Summer is almost here and registration deadlines are around the corner...don't miss out! 

     

"Physicians, Restrictions and More!"

     Nathan and I had a follow up appointment on Thursday with the Pediatric Orthopedic Specialist. This visit was to get the results from the second round of lab tests to discuss the next step in Nathan's progress. Nathan has been on restriction for the last week from PE and recess so that the swelling on both of his hips would have a chance to diminish enough that he could heal. The Specialist said that the Creatine Kinase (CK) level was still elevated more than what we had hoped. It had come down some for him to get to have his daily recess time back but, not enough for the doctor to give him back his PE class that he has two times a week. The doctor also said that as long as Nathan didn't have to do a ten mile hike that he could attend day camp this next week at Camp DaKaNi through CampFire USA. We have a follow-up appointment to see the Specialist again in a month where Nathan will get clearance to rejoin his classmates for PE. He is more than satisfied for the time being with getting his recess back and getting to go to day camp this next week!
     I will be posting more about Camp DaKaNi and their upcoming Camp C.A.N.O.E. for children with special needs in the near future. I hope everyone has a great weekend! Our family will be attending the much anticipated "Sensory Friendly Film" tomorrow morning of Dr. Seuss' "The Lorax" at the AMC Theater co-sponsored by the Autism Society. If you are interested in checking it out, click on the tab at the top of the page, titled "Autism Society", then scroll down to where it gives you the link to check out the featured "Sensory Friendly Films". This monthly special showing has been a blessing for our family because the 'Silence is Golden' rule is thrown out the window to accommodate those with special needs who need the freedom to move around and express themselves, like our son. The theater also keeps the lights up just enough where the children feel safe and the volume at a lower setting for those with sensitive ears. A "win-win" situation for families that want to see a movie on the big screen but, worry about how their family would be accepted by other movie goers. If you know someone that this would be of interest to, please share this with them! Thank you for following Nathan's Voice!!

Think Differently - Dash - AutismOklahoma.org

See Dash as he helps iBoy navigate the community and resources available to him through activities and programs at AutismOklahoma.org and follow @AutismOklahoma on twitter!
I hope you enjoy it and share it with others you know.
You may follow Dash on twitter @MyFriendDash for updates!

 

 Lorrie Servati ~ Family & Friends Team "Nathan's Voice"

"How is Nathan Doing?"

     I apologize for those of you that have been following our most recent posts on Nathan's infliction. We were so exhausted yesterday when we made it in after picking up his brother at school, then arguing through homework, dinner, showers & rushing everyone off to an early bedtime. My husband is starting to get his energy back...a little more each day. He is still fighting a deep cough and I am noticing that, every once in a while, I have that same cough! Ugh!!
     At the visit we had with the Pediatric Orthopedic Specialist yesterday morning, Nathan had a few more x-rays after the initial examination. We returned to the exam room and waited for the Specialist to get the results from the x-rays. He reported that the swelling on Nathan's hips had gone down a little with the help of the Ibuprofen I had been giving him every four to six hours. That was good news but, he was slightly concerned with the elevated Creatine Kinase level in the blood work from Tuesday afternoon. He wrote orders for us to re-visit our new friends at the lab to see if Nathan's CK level had come down any. Nathan had mentioned how the nurses had done such a great job and that it didn't hurt at all. The Specialist thought that it would be a good idea to use the same place, because of Nathan having had such a good experience there. 
     Nathan went back to school this morning for his first day back in attendance since Monday. I spent most of the day up there working on PTA related duties, after getting him settled in his classroom. I had to talk with his regular education teacher and his special education teacher because of the restrictions that the Specialist put on Nathan's physical activity. Nathan can not participate in PE or go outside for recess until the Specialist feels that the inflammation on his hips has gone away and his muscles or joints have healed properly. Even though Nathan was glad to be back in school with his classmates and the weather has been nice enough for the students to enjoy recess outdoors, we would have to find something else to occupy those time periods. He loves playing outside daily, whenever possible, and interacting with others in his PE class that happens twice a week. 
     What bothers him the most is that he can't join his brother, when he goes to play with the neighborhood kids, after homework is completed. I know it must be difficult for him to understand but, I have tried to give him a few ideas of things that he can do to distract him from constantly focusing on it...who am I kidding?!? That is probably one of his expert skills!! This afternoon, he played quietly down the hall and waited for his brother to return home from playing outside. I noticed that the two of them were playing a Wii game together after dinner and gave them an extra thirty minutes because they were playing so nice. I like to try to reward them, as often as possible, so that they know that we are grateful that they have each other, as brothers and friends.
     Depending on Thursday's lab results, the follow-up appointment next Thursday morning with the Specialist might not be necessary. If Nathan's CK level has come down considerably, it would most likely mean that the Ibuprofen is working and that it isn't that serious. I am not going to let myself think about any other possibilities, even though I have briefly looked into them online. Please keep our family in your thoughts and prayers as we wait until the Specialist's office calls us with the most recent lab results. Nathan and his brother have been looking forward to attending G.O.T.C.H.A. the week of March 12-16 at Campfire USA's local Camp DaKaNi for the first week of Spring Break. It will all depend upon what the lab results show and if the Specialist thinks the physical activity would be too much, too soon. Have a blessed weekend!