Friday, November 13, 2015

Somewhere on the Spectrum. Written by Sietske van Schaik

Somewhere on the Spectrum

Our family of five has come together rather quickly.

The eldest, Johnathan, is my step-son. He came to live with us when he was three, in December of 2011. Only a month later, our middle child Thomas was born. It was quite a change, going from just having Johnathan over on weekends to being a full-time parent of two! The first 10 months I was working full-time. I was as a restaurant manager, working 50 to 60 hours a week and wasn't home a whole lot. Dad was at home with the kids, and worked on my days off. Things were hectic to say the least.

I think because things were rather crazy at the time, that we did not realize something was amiss. Thomas was an amazing baby, so sweet, so quiet. Everyone commented what a perfect angel he was. We jokingly said we could never have another child, because there was no way a second one would be this good. He slept twelve hours straight, at 6 weeks old. He didn't like tummy time, so he didn't do a whole lot of that. He just liked laying on his back. He would greet the ceiling fan happily, whenever he came in the room. He loved staring at that thing. His best friend. Toys he had little interest in. He did like to eat.

He would guzzle a 10 ounce bottle and still want more. He started cereal at 4 months old because he seemed so hungry. Yes, we were clueless. Utterly, entirely clueless.

He had these sweet little gurgly coos and when he laughed he sounded like he was choking. It was cute and we had no idea.

It took a while for him to learn to roll over, but he was a big boy. Big boys take longer.

It took a while for him to learn to sit, but he was a big boy. Big boys take longer.

I stopped working when he was 10 months old. Combining our jobs was too much, it didn't work. Dad went back to working 50-60 hours at his job, and I stayed with the boys full-time. Thomas got pretty tenacious about getting into the Duplo bin, little rocker chair and all. He loved mouthing the pieces, and banging them. He learned to say "bye bye daddy" and waved as dad went to work, he did that for two weeks, then seemed to tire of it, and stopped.

Then he learned to stand, around 11 months. And he learned to cruise a bit.. walking took a lot longer. He just didn't feel secure enough to let go. ..Big boys take longer.

He got an ear infection that December, and the pediatrician felt that his ears never really cleared up, so we were sent to an ENT. By February he was getting tubes placed and we got the news that our son had sensoneural hearing loss in the higher frequencies. No idea why, where it came from.. but that surely was why he didn't talk. By March he had little hearing aids.. and Early Intervention evaluated him. He was quite delayed in a lot of things, so a special instructor was to come twice a month for 45 minutes. She taught him how to play with toys, something he had no idea about. She started with teaching him how to sign 'more'. They were quite adamant that he needed to learn to sign. Thomas felt otherwise. It took a year before he started using 'more' unprompted, and to this day he only uses sign along with saying a word. We went to UAB for genetic research, to see if there was a genetic cause for his hearing loss, so we could see if it would worsen or not. So far, no cause found.. but it seems to be stable.

By 18 months we felt Early Intervention wasn't enough, but we didn't know that we could appeal for more. I shared my concerns with our special instructor. I pointed out the strange things Thomas was starting to do. He has started spinning a lot, chewed on everything relentlessly, he didn't copy anything.. especially facial expressions. He was always smiling, even when he shouldn't be. He didn't point, or looked at anything you pointed at. No pretend play. His social skills were atrocious. ..But everything was blamed on his hearing loss. And... we found out I was pregnant with number 3.... Timing is everything.

By 20 months I filled in an M-chat and took it to the pediatrician. Again it was blamed on his hearing loss.

By 24 months I went back. His red flags seemed to be adding up to autism for sure. He was flapping his hands near his face, tiptoed around the perimeter of the room, stared endlessly at shiny objects and LEDs. Thomas was getting more and more particular about food textures, the kid that used to eat everything was now refusing most of what was served. He still had only about 10 words in his vocabulary and most of those were only used to respond to a question. 'Milk?' would be answered with 'Milk!'. "Well, a lot of these symptoms are seen in children with hearing loss, but if it makes you feel better, we can refer him to an autism clinic. Their waiting list is about a year." Ok. Sign us up. What the heck are we waiting for?

Baby 3 arrived. You can't imagine the way I felt throughout the pregnancy. We had no one to watch Thomas.. I did not trust anyone to keep him safe. He needs constant supervision. So Thomas was in the delivery room, with his dad. Yup.. that really happened. I felt so bad for this little baby that was being born into a family that revolved around one little boy.. a little boy that lashed out a lot. I considered sending her to family, for her sake. I worried he would hurt her. Thomas hated her. He treated her like a toy he didn't want. He tried shoving her away, he ignored her. He would throw a blanket over her, so he wouldn't have to see her. He stole her bottle and drank it. He would climb on top of me whenever I tried to feed her. He was jealous.

We continued on with Early Intervention. Every couple of months something new would pop up, something new that would confirm to me that my son had indeed autism. I read and read and read. He was 2 1/2 when we decided to add speech therapy to his schedule. He seemed to finally be interested in communication. He was using 'more please' without prompting and had learned 'go' as well. I enrolled him with our local university who happened to have a communication science center.. minutes from our home. A student clinician would work with him for an hour, twice a week. I was excited! Sadly, Thomas was having nothing of this learning business. Oh, he enjoyed time with Mr. Anthony. He ran the perimeter of the room, squealing. He traced the cinderblock walls with his finger. He stared at his reflection in the bolts of his chair. And the poor clinician just didn't know what to do. After a few weeks Thomas would cooperate a little. He would go through the motions, saying "more please" to everything he wanted. In 12 weeks time he learned... nothing. My son is a stubborn child, wildly independent and too smart for his own good. He needed someone who wouldn't put up with his tricks.

Halfway through our time with the university, I had also enrolled him with Easter Seals. Coincidentally, our speech therapist there was a former student of the University. She assessed Thomas and recommended we have him assessed by the resident occupational therapist as well, for some of his behaviors. I had no idea about sensory processing disorder.. but here it was. Thomas was a seeker, in constant motion. We learned about deep pressure, about brushing and all the things we could work on. He was W-sitting and not crossing midline. I had no idea this was an issue, I was clueless. But within months he was improving his balance and the deep pressure helped him a lot.

Ms. Jennifer, the speech therapist, worked wonders. He said block, bubbles, more, go, please, open. He was talking!

We were doing the gluten free, dairy free thing too. Oh, I thought it was total bogus when we started.. and then his skin cleared up, his bowel movements became more regular.. he was less itchy and irritable. So we stuck with it. We threw everything we had at this kid. He needed to learn to communicate, somehow. I wanted him to be happy.. and frustration was keeping him from being happy.

Early Intervention helped us transition into the school system. An IEP was put together and he would be getting in-home visits from a variety of people. Everyone was aware that I thought he had autism, but without diagnosis, his IEP was based on his hearing loss. Even the Hearing Impaired teacher said that his delays couldn't be from his hearing loss... it was just not that significant a loss.

By the time he turned 3 he learned to jump and use stairs without help.. and I like to think the occupational therapy was essential in that. But.. the speech faded again. He got stuck on 'open'. Everything he wanted was 'open', if that didn't work he would try 'more'.. and if that didn't work he would try 'go'. His progress stopped, again. He got angry a lot, started lashing out. He started hitting and kicking and biting. He was MAD. He refused his hearing aids entirely by now (he was wearing them in therapy only, prior to that). We introduced PECS, hoping that would help.

We started getting visits from the school. Our amazing Ms. DeEtte brought fun into our home. Thomas was delighted. All the preschool tasks he performed with a smile. Sorting by color, stacking pegs, puzzles, books.. he couldn't get enough. Ms. Amy worked with PECS, teaching him to hand a card to her to get what he wanted. He took to it right away. Thomas was requesting bubbles constantly. He would come find you to shove that little card in your hands. Ms. Denise would work with him on his vocabulary. Ms. Andrea would work on writing, gluing, coloring and cutting. We were still getting speech therapy and occupational therapy from Easter Seals too. WHEW! We were constantly busy.. but, Thomas really seemed to blossom. My little toddler was now a preschooler.

The last time we saw his pediatrician, at his 3 year well child check, she finally said that she could see some autistic symptoms.. This July, at 3 1/2 years old, Thomas got diagnosed with autism. We waited 13 months for our appointment, the one the pediatrician gave us just to shut up the overly worried first time parent.. The overly worried first time parent who was RIGHT.

At first I felt overwhelmed, the list of recommended things to do was long. But now we know we need to take it step by step. We've relaxed a little.. learned a lot. Our next step is getting him an AAC device. Ms. DeEtte referred us to Children's rehab, who have an AAC clinic.. Ms.DeEtte is coming twice a week now, because Thomas has taken so much to her. He is copying words and gestures with her. I am so happy to have her.

Ms. Jennifer sadly moved on to another city and another job, speech therapy has not been very good since she left. He's back to using 'more' for everything.. but, he's having a lot of spontaneous speech he learns from copying movies and people. He scripts, a lot.. but it's ok, he is happy. He speaks very, very little to communicate. I just have learned to anticipate his needs and recognize situations he will get upset about. He has been watching Signing Time now that it is on Netflix, and he loves it. He tries to copy Rachel's movements, even though they are much too fast for him. He's really into letters too, right now. He is playing with spelling apps on his dad's phone, sliding the letters into place. He traces writing with his finger, whenever he sees some. He's counting too, verbally. They're not always in order.. but he's trying. I'm very proud of him. I would like for Thomas to be able to attend a preschool program the following school year. I don't know if it is possible. He does have some aggression issues, although they are rare, and usually caused by not understanding what hurts others (he feels very little pain himself) or frustration and anger. He does run off and following directions is not really something he is capable of yet. We will see. I hope an AAC device will help him in this.

Occupational therapy with Easter Seals doesn't seem to be as effective anymore, since he has gotten past his initial issues.. but he really enjoys the sensory room. He is incredibly good at jigsaw puzzles far beyond his age level and things like the game Perfection (shape sorter on steroids). Ms. Andrea from the school system is working still with cutting, writing, coloring, gluing and all that sort of stuff. He's learning.

We've transitioned to pull-ups, since my dear boy does NOT want diapers anymore (I think they are uncomfortable). We're teaching him how to pull them off and put new ones on. We do catch him naked sometimes.. and he has some fecal smearing incidents, which is a fairly recent development.

We have stopped the GFCF diet. Amelia (number 3) is 18 months old and has learned everything her brothers could teach her, including climbing on all the furniture to reach things.. She eats all of Thomas' food and he eats hers. Thomas takes 3 hours to eat, keeping them separated is not really feasible. So far, he doesn't seem too itchy. Both are dairy free, so that is not an issue. Their relationship has gotten a lot better. It's interesting to see how she reached milestones.. and to see that they do have a lot in common. Amelia learned to walk fairly late too, at 15 1/2 months, even though she was cruising early. She doesn't talk much, she knows few words, even though her first words came at 6 months old. She's a bit shy to strangers, but very social with those she knows. She likes to copy and learn from her brothers. Thomas does enjoy her company now, even though he still knocks her over from time to time.. shoves her out of his way, uses her as a stepstool etc. I have to watch them pretty closely.. but they're really a pair now. Double trouble.

Johnathan is receiving occupational therapy too now, since his handwriting is pretty bad.. he has some clear sensory issues too, mostly displayed by endless vocal stimming and constant moving. We are having him assessed by the school, so he wont have to travel all the way to Easter Seals for OT.. we honestly feel he may be on the spectrum too. He does well in school, but impulse control and following directions are really tough for him.

All three of these kids are dreadfully smart and I feel like I am constantly having to be one step ahead. It's a delight, and terrifying. They're happy and loving. Everyone sings and dances a lot and we break out in random dance parties often.. Giggles abound. In this journey I have figured out that I am on the spectrum myself.. I think it affords a certain understanding for how the boys feel. Whenever I am tired I can't stand to be touched, smell anything, hear anything. I get overwhelmed. So we lead a pretty quiet life. We don't leave the house too often, other than to pick Johnathan up from school. He would like to go to the park more often, but with three kids I feel like I don't have enough arms at times. Amelia will run one way, Thomas the other. Once Amelia is older and not as likely to just run off, I think outings will become more likely.

I haven't been posting as actively on Facebook, since we're busy a lot, but there are adorable videos and pictures on our page 'The thing that goes bump'.

-Sietske van Schaik
Many more videos and pictures on our FB page,
 The thing that goes bump.

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