The Bucket

Many children diagnosed with Autism have difficulty entering unfamiliar territory. The anxiety the child feels may be due to increased noise, larger crowds of people, or just a fear of not knowing what to expect. Noah is like this. In fact, his anxiety gets so high, that he becomes physically ill.

When discussing this with a psychologist who used to work with Noah, we were told to "just bring along a bucket". Never avoid places due to fear of Noah getting sick, because then he would never learn to cope. Ok. So, we keep buckets in both vehicles. Also, upon arrival of every new place, we initially scan the room for the location of the bathroom and make a mental note about the quickest possible route. Unfortunately, not all places have bathrooms, and a "bucket" isn't always an appropriate assessory on my arm.

This Fall we have had two incidences where Noah's anxiety got the better of him. We went to Wisconsin Dells the latter part of August. Noah has been going to the Dells with Brian and I since he was 2 years old. He used to LOVE it. As a toddler, Noah refused the "tiny tot" play areas, and would only go down the big slides with his Dad. I can still hear the laughter, the giggles, and the words, "again", "more", and "fun". The last few years have not been as positive. The noise level, crowds of people, and uncertainty of the slides have created an intense degree of anxiety for Noah. Because Noah has demonstrated more skills and comfort in the lakes and pools that we frequented this summer, we had high hopes that it would be "better this year" than last year. So off we went in the minivan to the Dells. AGAIN. Tons of anxiety. AGAIN. Tears and begging to go home. AGAIN. Vomit. AGAIN. Sigh.

Our next venture was on Labor Day when our family went to the Sheboygan County Fair. Noah, like many others on the spectrum, really enjoys rides. An occupational therapist would be able to explain it better than I, but it has to do with the intense sensory input that spinning and fast motion provide. I did not expect the Fair to be as crowded or loud as it was. (I guess it has been a long time since I have been to one??). On a positive note, Noah did much better at the Fair than he did at the Dells. There were no tears and he only asked a few times to go home. Once he was on the rides, he was fine. Then, out of the blue.....vomit. AGAIN. Sigh.

There is a phrase that states repeating the same behavior over and over and expecting a different result is a form of insanity. I do not feel insane. I believe that with a child on the spectrum, going to the same place over and over will eventually lead to some degree of comfort when in that situation again. Unfortunately, we only go to the Dells and the Fair once a year. That does not provide the repetition needed to overcome the anxiety Noah feels when we are there. So, do we continue to "try" these exciting family adventures yearly with the possibility of Noah getting ill, or do we give up and provide a safe, stable and quiet atmosphere and avoid new locations?? As you can see, we continue to push new activities. What would you do?

A Perfect Ten

Noah celebrated another birthday in July. It seems like it was just yesterday when the doctor laid him on my belly, but it was ten years ago. I can't believe it has been that long. He sure has grown.

July was a month of many achievements for Noah. He played on one of the Kohler Baseball teams, he went to Cub scout camp with Brian for three nights, and he transitioned from intensive in-home ABA therapy to post intensive in-home therapy. Whew.....it was a whirlwind of a month for us.

Kohler is a small town, with a small town atmosphere. Everyone knows everyone, and everyone knows Noah. While on the baseball team, Noah was I believe just about the best bench warmer I have ever seen (being his mother that is how I would naturally feel, no?). On Brian's cue, Noah would high-five his teammates and cheer for his friends and other players throughout the game. During the fifth inning, Noah would get his chance to bat. Whereas the other boys successfully swung at the fast pitches from the opposing team, Noah was allowed to swing at his coach's gently pitched balls. All of his teammates, the parents and fans in the stands, and even the coach's from the opposing team would cheer Noah on as he hit the ball and ran to his base. The proud grin on his face always made my evening every Tuesday and Thursday this summer. His run never counted on the score board, but in my heart and Noah's heart, that run meant so much more than a number. He felt a sense of belonging, an acceptance that doesn't always come easy for children like Noah. We truly are very blessed to reside in this community.

Noah also did extremely well while at Cub scout Camp. He was a Bear Cub, and will now be a Webelos this coming school year. Because of the way the camp organized the meals, it was almost impossible for Noah to stay on his gluten-free, casein-free diet. Brian and I made a decision to allow Noah the remainder of July to eat without restrictions. It is now mid August and we have yet to reintroduce the diet again. I, Brian, the therapists, our family members, and our friends have not seen any difference in Noah's behavior, attention, or sleep. Meals have been easier for me, grocery shopping is more economical, and going out to eat has once again become an option for the family. Noah has also been happier with his food selections! We may consider going back on the diet in the future, but for now Noah seems fine without it.

Actually....everything right now seems "fine" in the life of Noah. :)

Peter Pan

Anyone who knows our family knows that Noah is a huge Disney fan. Because of this, Halloween costumes in this house have revolved around characters such as Pooh and Tigger, Lilo and Stitch, and Peter Pan and Tinker Bell. My personal favorite was the latter. Hannah made a perfect Tinker Bell with her blond hair in a bun on top of her head and those beautiful blue eyes! Noah made a very handsome Peter Pan, pointed green shoes and all.

In the Disney animated classic, Peter Pan and the other characters in Neverland never grow up. As parents, we often say we want to keep our children young for as long as possible. We wish they would stop growing, so we can cherish those special moments like snuggling, reading stories, and kissing boo boos to make them better.

Having Noah is similar to having a child that will stay young forever. His interests, social skills, and conversational skills have not significantly progressed in the last four years. In fact, his interests have started to regress over the last week. Teletubbies, Elmo, and Dora are topics that have reappeared after a year or more of being eliminated. (Really - I got rid of ALL things Teletubby in the house!)

Noah may possibly never grow to the level of independence required to be on his own. But instead of mourning the loss of a future most people would hope for their child, perhaps those of us with an autistic child can rejoice. I have a child that will not grow up. He will more than likely never move away to college. He will never tell me he doesn't need me. He will always need me. We will always have the Mother-Son relationship of snuggling, reading bedtime stories, and just giggling because it feels right at the moment. Making shadow pictures on the walls with our fingers will never grow old, or become too childish. We have forever.....just like in Neverland!

Grandpa Pops

On Wednesday, April 29th we got the dreaded phone call at 6:15 in the morning. Brian's Dad, Charles Anthony Post, had passed. He had been ill from a lung infection, and was on oxygen. Still, I did not expect him to pass so suddenly. Truly, Charlie had been "ill" from emphysema for years, and still had the energy and motivation of a person twenty years younger. Charlie was a perfect example of a hard-working middle class person who would have given the shirt off his back to help his neighbor. Charlie taught the children how to appreciate the great outdoors through camping, fishing, and hunting. I and Noah adored him.

So how do you tell an autistic child that his grandfather died? Noah does not comprehend abstract concepts. Everything is black/white in his mind. A very concrete thinker. I requested help from school, and they contacted the autism consultant who wrote this:

When People Die
Sometimes people get sick and get better and sometimes people get sick and die. Most of the time people are sad when someone dies because they will not be able to see them anymore. When people die they go to heaven, this is a good thing. When people are in heaven I can't see or talk to them, but I could still look at their picture.
Most of the time when people die the people that are still living have a funeral for the person who died. At the funeral, some people will be sad when they talk about the person who died. This is okay. Some people will be thinking happy thoughts about the person. This is okay too. Sometimes at the funeral you can see part of the body of the person who died. The person who died will not be able to talk to me. If I am upset or sad about this, I can talk to Mom or Dad.
Sometimes people die and people are sad. If I am sad I can talk to Mom or Dad. This is okay to do.

I read this to both children the evening before the day of the funeral. Hannah, who is 7 years old had many questions. Noah did not seem to pay much attention. I told him we would be going to church and we would be saying goodbye to Grandpa. Noah repeated, "We are going to church", and he had a blank expression on his face.

During visitation at church, Noah appeared oblivious to what was happening, but then he slowly walked up to the casket, peered inside, and said, "Look, Mom. It's Grandpa. He's sick." Noah, apparently had heard some of the dialogue I read the evening before. He picked up the familiar work, "sick", but not the word, "die". Then at school a few weeks ago Noah stated to his teachers that he had visited Grandma, but Grandpa was not there. Noah said, "He is at church. He is sick."

Death is a concept even adults have difficulty defining, explaining, or understanding. Children appear to accept it more readily because they do not have the fear that adults exhibit over the subject. Will Noah ever comprehend? Only time will tell.

Just like the other kids

This July will mark our third year with WEAP. Noah's intensive three-year program will end. Starting this July until his 21st birthday, Noah will be receiving fewer hours of therapy than he has had up to this point. I have mixed feelings about it. On the one hand I am excited about him being with the family more, and having more freedom to go places. On the other hand, his therapy will go from 35 hours a week down to approximately 10 hours a week. That is a big chunk of educational time that we will lose.

Because Noah will be going full days to school for Fourth grade, the school and I decided that he needed some "transition" time to prepare for a full day. For this month, Noah is going full days on Thursdays. Next month, he will go full days on Thursdays and another day (Tuesdays maybe?). Noah has been going to school since he was three, but never for a full day. During Junior and Senior Kindergarten he got out of school at 11:00 AM - just like the other kids. But in First, Second, and now Third grade, he leaves at 1:00 to come home for ABA therapy. Then from 1:15 until 6:00 PM every night he is working in our home with therapists.

Last week Thursday was Noah's first day of all-day school. I was nervous. All afternoon I wondered if there was more hitting, tantrums, screaming, or (god forbid) vomiting. But Noah came out of school on Thursday happier than I have seen him in a long time. His aide said he had a great day. Noah told me he went to computer lab "with the other kids", and he stayed all day "just like the other kids." I realized at that time that he wants to be like his peers more than I imagined. Up to this point, he often seemed oblivious to his peers interactions and behavior. I could tell he wanted to be like his friends, but I also thought it wasn't Noah's priority.

My heart just bleeds knowing that he never will be exactly "just like the other kids." Knowing now that he wants to be, just makes it worse. Then I remind myself. This is good. This is really good progress. He WANTS to be like the other kids. That is "normal" and developmentally appropriate. I will embrace this new need for "belonging" and help him every step of the way.

Nothing to Fear but Fear itself

I remember a time not so long ago, when Noah was about 18 months old. He spent three days a week at a reputable Daycare not far from where I worked. I picked him up after work one day to find an oval teeth print on his right cheek. The imprint was so detailed, I probably would have been able to identify the child who left it, if I had wanted. It was as clear as dental records!! I was, of course, horrified. After I calmed down, and was driving home, I realized it would have been just as bad had MY CHILD been the one who did the biting. No mother wants to hear that her child had injured another child. I sympathized with the mother (whoever she was) who had to sign the injury report that day.

Noah has never injured another child. I hear stories of autistic children who pull hair, bite, pinch, and hit other children. Mine never did. The other children have always ADORED Noah, and in school, his classmates often fight over who gets to be his hallway buddy. There are even "neurologically normal" peers who refer to Noah as friend.

A couple weeks ago I attended our monthly meeting at school. Noah's teacher, special education teacher, teacher aide, occupational therapist, speech therapist, and school psychologist were all in attendance. These meetings are often difficult for me. I listen to stories about Noah's inability to attend to a task, his perseverance on movie talk, and sometimes the behavioral problems (hitting his head, not complying with the teacher's request, or flapping his hands). Don't get me wrong. There are also good stories. Stories about a peer helping Noah, or about a really neat art project that he did all on his own, or a math worksheet that he did without assistance. I can tell that the school personnel that work with him truly do care for Noah, and love working with him.

This meeting was different. I usually shed a few tears; enough for one kleenex, and then I am fine. At this meeting, however, I needed a few more kleenex. The teacher told me what happened that morning, and it was not good. Noah evidently was not quiet during community circle and was asked to sit at his desk. He pounded the desk, then picked UP the desk and slammed it down. Noah then repeatedly hit his head while screaming. The other children were scared. I was told that after Noah was removed from the classroom, the children asked questions and needed to be consoled. A thirty minute conversation with the class was required because his classmates now "feared" him. They asked the teacher if he would hit them next. That was the hardest meeting I have attended up to this point.

Up until now I have worried about Noah's academic ability, his social ability, his ability to take care of himself and follow directions. I have never had to worry about his classmates acceptance. They have always loved him. I've never feared that they would FEAR him. This is unchartered ground for me. And I. am. scared.

LeTTerS and Numb3rs

It is difficult to have consistent discipline, whether your child is "neurotypical" or autistic. Noah spends his days with many different people, with many different personalities. He has Brian and I at home, his therapists from Wisconsin Early Autism Project (there are 5 of them), two aides at school, a regular education teacher, a special education teacher, a speech/language pathologist, and an occupational therapist, just to name a few. We are a group of people whose only real common link is Noah. We all demonstrate different strengths and weaknesses, as do most people in society.

Brian is a numbers guy. Always has been; always will be. Whereas, I am more of a language oriented person. Most of the time, we compliment each other very well. We approach each child-centered task in our household as a cohesive team. Brian and I work well together. But we also have different styles for discipline. Brian, the numbers guy, likes to "count" when the children misbehave. He is a huge fan of 1-2-3 Magic. I, on the other hand, like to analyze the problem and try to figure out what the child "needs". Once a psych major, always a psych major!

Obviously, some confusion has arose from our different styles. I also think school is handling some behaviors differently than our home therapists, which is also adding to the confusion.

Noah thrives on consistency. If every single day could be exactly the same as the last, he would be happy. Unfortunately, life is not like that. There are always last minute changes, different places to go, new people to meet, and new foods to try. Along those lines, there will always be different people to work with who have varying personalities.

Flexibility is a very difficult concept for Noah, but he is showing improvement in that area. It is also a difficult concept for Brian, who demonstrates many traits of aspergers. The 1-2-3 Magic program is simple, and has a definite curriculum with right and wrong clearly defined. My way does not. I am thinking that if we ALL use 1-2-3 Magic generalized across all settings, with all the people in his life involved and cooperating together, we may see some improvement with behavior. I have called a meeting with school, and one with therapists. I am taking charge in hopes of improving Noah's quality of life, and I am hopeful that this will work.

No Cavities

Noah has been experiencing an increased state of agitation since Christmas. He seems more angry, and disconnected. He bangs on tables, walls, and floors with his hands or his head. I have been trying to understand what may be wrong.

We know that Noah has gained weight, has grown a couple inches, and is older. I called the doctor, and he increased Noah's Risperdal (psychosomatic med). The next week I called again to inform the doctor that there was no change in Noah's behavior. The medication was increased one more time. I now sit here wondering, do I call again today? It has been another week, and again there is no change in behavior. The doctor will increase the medication, and I'm starting to wonder.....is it the right medication? Is this the right thing to do?

Last week Brian had noticed a black spot behind one of Noah's front bottom teeth. Ah Ha!! I called the pediatric dentist, all "hopeful" that a painful cavity could be to blame for this behavior. In the past, Noah has demonstrated some pretty big tantrums due to loose teeth, or other pain. The dentist got us in right away the day I called. The black spot, however, was identified as tarter build-up, and there were no cavities. My husband and I are the only parents on the planet "disappointed" that our child does not have a cavity. If it were a cavity, then we would have an explanation, an understanding of what may be causing the behavior. Back to the drawing board....

Then, Noah came home from school two days ago with a sore on his foot. When asked, he said his shoes hurt. I bought a pair of shoes an entire size bigger. He LOVES his new shoes. He had a better day at school today too. This may explain the difficult days at school, but at home and during therapy he does not wear shoes. I am still puzzled, and will continue to monitor everything. Research, research! Times like these are when I wish he could verbalize his needs more readily.

Feast without Yeast

I started Noah on a yeast-free diet shortly after Christmas. The psychiatrist who wrote the book, Feast without Yeast, has an office right here in Wisconsin as well as in California. Brian and I like to try all means possible to help Noah, and we both agreed that this diet would be worth a try. After all, we do see improvement with the gluten-free diet.

Feast without Yeast defines a four-stage process for eliminating yeast from your system. The first stage eliminates certain foods from your diet, the second stage indicates more foods to eliminate, and so on and so forth. Noah also took Nystatin during this time. Nystatin is a medication that rids your body of excess yeast.

About three weeks into the new diet regimen, we noticed that Noah was often "spacing out"; He would just stare for long periods of time at nothing. I also noticed that he was mumbling more, and his language was regressing.

Perhaps this diet works for some children on the spectrum, but I have decided that it is not in the best interest of my child. Noah is now OFF the yeast-free diet, and I have discontinued the Nystatin. I do not regret trying the diet. If I did not try it, I would always wonder if it would have helped. I know now that it does not work for Noah.

Well, I am off to do more research on the next thing we may try, whatever it is.....

SANTA!!!

Christmas still has that magical feeling in our house. The children continue to believe in Santa, and anxiously await his arrival on Christmas morning. This year, Noah sat on Santa's lap and asked for a movie (no surprise!). He did get the movie he asked for, but also a new bike.

Noah had finally learned after 2 years of lessons from therapists, Brian, and myself to ride a two-wheel bike this past summer. His knees, however, were practically touching his chin as he would ride it. We weren't sure how he would react to a new bike because he often likes everything to stay as is.....no changes. A new bike means a big change. Bigger petals, bigger seat, bigger wheels, and most importantly, further from the ground! Noah was actually really excited about the bike. We look forward to this Spring when we can get outside and try it out.

So many changes. He is getting so big. He is making progress. I look forward to the new year, with hope that we continue to embrace the changes.