Sunday, June 26, 2011

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

     Once upon a time, everything around us 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 an individual (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 situations 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 all protect our children, please feel free to visit http://www.awaare.org/. There are many resources on that website, as well as others which have not been 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

Thursday, June 16, 2011

A Change In Over-The-Counter Supplements

     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

     Nathan was almost five years old when he was first diagnosed with Autism. That was almost three and half years ago but, in our eyes that was more than three years late. Right around his eighteen 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 second 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 glass 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 appointment 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

Tuesday, June 14, 2011

Nathan's 8th Birthday


     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

Saturday, June 11, 2011

Today is a step in a new direction

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!