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Liam's Story
Feb 5, 2007 at 5:23 PM
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Liam was born on March 25th, 1998. It was a particularly odd time in my life back then, but I was thrilled with my new little son. The labor and delivery were long and hard. I woke up at 6am with mild cramping, 8 days past my due date, and 67 hours later I had him in my arms. I insisted on a natural birth. Everyone always congratulates me on 'toughing it out,' but in truth, I didn't want drugs because I was scared of how they would make me feel. That, and I'm absolutely terrified of needles. The did offer me nitrous oxide to take the edge off, but I don't believe the mask was working properly, and all I really got for my efforts was a very sore set of lungs the next day. He was delivered at 1:09am, after 2 hours on a delivery table. I was so tired, basically not having slept for nearly 3 days, that I really only remember a few details.. the awful burning sensation when his head crowned, the amazing feeling of the warm olive oil they poured on me to ease his head out.

My parents had split up at that point, and though I'd been living at my father's home for some time, when I was discharged from the hospital, I went to stay with my mother. I likely would have done myself a HUGE favor if I'd gone back to my Dad's, but my mother had me believing that I wouldn't be able to manage on my own, and I guess at that time, I believed it. So I moved in with her - my younger brother and sister were also living with her back then. As it turned out, I was so exhausted from the labor that it took me 3 weeks to really feel like myself again, so I would have needed help.

Carl and I were together at that point. In fact, he was with me in the delivery room when Liam was born. He had mixed feelings about everything - Liam is not his biological son. He caused me a whole lot of emotional grief during the week or so after Liam's birth. I was a mess, anyway.. but the thought of losing him because he couldn't get past the situation hurt so much. He eventually came around, though, and things were good.

I'm not sure how it all happened in my head, but I ended up going back to work that summer. I guess I wanted to be responsible, and I had my mother to babysit for me (she wasn't working and I was living with her), so I went back to the only place I'd ever worked - McDonald's. I'm a very independant person, and within a few months, I could no longer stand not having my own space. We were living, 5 adults, a baby, and a needy little dog, in an old, 2 bedroom home, and I desperately needed space. I wanted to be a responsible mom, and give Liam a home.

So I applied for low income housing, and they offered me a 2 bedroom apartment in the center of town, on a quiet street. It was 15 min. walk from work, and not a bad place. I only waited a month or so to get the place. My rent was based on my income, which wasn't much back then. My mother was uncomfortable with the idea of Liam living with me. She, once again, didn't believe I could do it. It took her 18 months to even set foot in my kitchen. I was very excited about having my own place, and looking forward to picking out curtains and things with her.. she had no interest in all that. She didn't want me to take Liam.

As it turned out, within a year, I got promoted twice and found myself as a manager. Because of this, I worked lots of different shifts, and it made babysitting an issue. I'd assumed that my mom would come to my place to watch Liam while I worked - she'd done that for another girl a few years prior, so I naturally figured she'd be agreable for me, her own daughter. But she didn't have a car at that time, and I didn't even have my license. So Liam ended up staying at my Mom's most of the time. I wasn't happy about it - but there really wasn't much else I could do.

Until I started having a hard time getting in touch with my Mom. She would deliberately not answer the phone. Or when I was able to get her to answer, there was always a reason why it wasn't a good time to go pick Liam up. He was sick, he hadn't eaten yet, he was napping, the list went on. It got to the point where I felt panicked inside. And so Carl and I talked, and we figured it out so that I would be able to move in with him, and stay at home with Liam.

Liam, at that point, was showing delays. He was 2 years old, and hadn't spoken a word. His fine motor skills were lagging, and he was engaging in repetative actions instead of more appropriate play for his age. I knew something was off, but my mother insisted that he was just going at his own pace, as some children do. I knew better.

My soap opera posts tell more about what followed after I left work, so I'm not going to explain it again. When we managed to get Liam with us full-time, I took him to my family doctor, who referred me to the local pediatrician (yes, we only have one here - and you see him by special referral only.. the joys of small towns!) to begin addressing his problems. We had his hearing checked to make sure that was not the problem. We got referrals to the local early intervention program, the speech therapist at the hospital, and the occupational therapy office at the hospital. Also, he gave us a referral to the children's hospital in the city, to have him officially assessed and diagnosed.

Early Intervention was the first to contact us. We set up home visits every other week, and it went really well. The girl that came out was about my age - I really liked her, and so did Liam. They did things like puzzles, rolling balls on the floor to demonstate turn taking, and other activities to help with his fine motor skills.

Speech therapy was.. an interesting experience. As he was completely non-verbal at the time (he was 3) and not really showing any sign of trying to speak, we decided to try a communication system called PECS with him. It stands for Picture Exchange Communication System, and involved him using pictures to communicate his wants and needs. It was a very structured program.. using incentives such as toys or foods, and asking him to pass the appropriate picture to match the object. We invested 70$ to buy the binder to store all his little photos. It had small velcro strips, and we used 2"x2" black and white photos, laminated, that velcroed to the binder. He did well with the program, but it wasn't useful at home - he had other ways of communicating, and the binder and paraphenalia were more of a hassle. It was another person interacting with, and encouraging him, though, so we continued with the sessions. He also did other activities. I enjoyed the appointments -- I got along really well with the speech therapist - she was a sweetheart. When Liam was 4 years old, we stopped going. It wasn't really serving any purpose anymore - we kept having to cancel appointments for whatever reason, so hadn't really been going much anyway.

Occupational therapy was really good. They assessed the level of his delay, and we set up appointments to work on some activities to develop his skills. Things like drawing lines on paper, (holding a crayon was a task for him in itself), putting small objects like dried beans, or rice, into containers, and other things like that. OT followed his progress for a few years, as was VERY helpful when it came time to plan his transition to school.

We waited for months for the referral in the city. They sent ahead some preliminary paper work to fill out - pages and PAGES of questions about everything from daily routine, to behavior, diet and social interaction. I still remember sitting next to Braedon, barely a month old and sleeping in his baby carrier, filling out those forms. We made the drive into the city - 4 hours. Carl's mother came with us, and stayed at a nearby hotel to watch Braedon while we went with Liam to the hospital. We were prepared for several hours of consultation and observation. What we actually ended up doing, was sitting and talking to psychologist for an hour and a half. He confirmed our assumed diagnosis - labelling it, officially, as PDD/NOS (Pervasive Development Disorder/Not Otherwise Specified) and explained that this was a classification on the autism spectrum. He was very nice... observed Liam doing some basic tasks, told us to keep up with the therapy we'd already established and that in a few years time, we could go back for a more updated assessment before he started school.

When Liam was 4, a new program was started here call EIIS - Early Identification and Intervention Services, a program designed to enhance services for families with children with Autistic Spectrum Disorders. It was new to the area, and had positions for several people on the team - a social coordinator, speech therapist, occupational therapist, and psychologist. They had a hard time filling the positions at first - but we lucked into having a social coordinator with a TON of experience with autistic children, and therefore many many good ideas. She was instrumental in making Liam's transistion to school a smooth one. She set up meetings with the school personel, attended orientation with him while I went to the parent meeting, and did school visits to monitor his progress. She was really wonderful.

Liam spoke his first word the summer before he started school. And as I'd kept saying, (despite the insistance of the professionals that told me not to expect miracles, that some autistic children 1- never speak at all and 2- only speak a word or two ever), when he figured out that speech was useful, many many other words followed that first "bye-bye." I think the whole house was in tears that night, hearing him talking. I was living with my father again, at that point, with Braedon and Liam. Carl was living in a different house, more appropriate location-wise for his work. It was supposed to be a temporary arrangement.

We soon learned that Liam could read. He would read, outloud, anything that we put in front of him. He participated in a program called Ready-Set-Go, which was held at his new school that July, for 2 weeks.. and was designed to help the kids started school for the first time become acquainted with the school routine and environment. The program was held in the French immersion classroom - and imagine the surprise we all had when Liam picked up a FRENCH book and started reading it! He had taught himself, somehow, to read phonetically. This is still a mystery to everyone. I'd read to him all the time, and always spoke in very simple, clear words - but I'd never deliberately taught him to read! When he was 3 or so, he used to sit on the couch with whatever western novel Carl was reading at the time, open it, and flip pages as though he was reading them - we used to joke about it. I think he was really reading.. he just couldn't talk to show us at that time.

He does not have the typical anti-social behavior that most autistic children have. He started school in September with a full-time-aide to help him both in the classroom, and in the various social situations that come with the territory. His classmates were - and still are - wonderful with him. But he's an amazing kid, and very likeable. He reads anything you give him, and that gave him an advantage because the other kids were amazed. He was able to read outloud to the class when he was 6 years old - entire books. He has a very acute memory - I would call it photographic but it doesn't only apply to visual things. Math is a breeze for him - he looks at the equations and has them memorized in minutes. Same with spelling - its rare that he gets less that 100% on his weekly spelling tests. Academically he's beyond his grade level. He struggles with printing and writing, but that's a fine motor problem. He types at twice the speed of his classmates. (wonder where he gets that from! *grin*)

We've gone through stages of 'stim' behaviors. Everything from hand-flapping, bouncing, chewing his finger (literally chewed the side of his index finger raw.. it was awful..), spitting.. some of the behaviors were more acceptable than others. Some were VERY hard to correct. And whenever we were successful in our efforts to stop a particular stim behavior, it was immediately replaced by something else. Currently, at nearly 9 years old, he's able to keep his stim behaviors limited to moving his fingers instead of his entire arms/hands, and jumping.

Toilet training was a big struggle. He wore pullups to school for the first two years, and wasn't totally trained until he was 7 years old. Talk about expensive.. sheesh! He does wear glasses and has since he was 6.5. He doesn't mind it - his vision is improved enough that he wants to wear them, which is great!

He's sensitive to food textures, and diet has been a struggle. He's anemic, perhaps always was, but getting him to eat meat is REALLY hard. He loves chicken nuggets and hotdogs, fish sticks, but won't touch ground beef, or steak, or anything that isn't breaded. He hates anything with sauce, except mac n' cheese, and isn't a big fan of cooked veggies. He eats apples like they're going out of style (his favorites being Granny Smith, closely followed by red delicious), loves OJ, and green pepper sticks! It has been a real struggle to expand his diet. These days, I usually end up cooking two meals - one for Braedon and I, and something else that Liam will like. It makes grocery shopping expensive.

He's sensitive to certain sounds, and this remains a bit of a mystery, as it's very hard to predict what will set him off. I've seen him go histerical over TV commercials, certain songs, echos in large rooms like the gym at his school.. yet the fire alarm or school bells don't bother him at all. I half wonder if it's not more to do with the frequency of the sound waves, but that's speculation, and of course, would be very difficult to prove :)

He loves marbles, bubbles, and computer time. He can find anything he wants online (with the help of google lol) - everything from online kids games for his brother, to pictures of entertainment company logos. He can imitate any sound he hears.. this amazes me. If you ask him "What sound does a pig make?" he won't say oink.. he'll imitate the grunts of a pig so accurately you'd swear there was a pig next to you. He likes to read, loves playdoh, and memorizes all sorts of off the wall things. Like.. at the end of PBS kids shows, when they say "This show has been brought to you by... " and then list off 10 different families, organizations, etc. that have sponsored the show? He can repeat that information for at least a dozen different shows, complete with the "... and also by PBS viewers like you. Thank you!' with the exact same inflections and tone that are used on TV. He also memorizes the backs of DVD cases. The names of movies, who made them, and what the logos for each company look like. He will sit with a pencil and paper and write the names of all these, and now will even draw the shapes of some of the logos, as well.

He memorizes tunes to songs equally well. When he started talking, we were all amazed. I heard him one day, about a month later, in his bedroom, talking to himself in a sort of .. melodic voice. When I listened closer, he was singing the alphabet song!! I had a giant collection of kid's songs on my computer that I played alot when he was very young. He'd stored away all that information... when I realized he was singing, I started singing the first line to a song, and he'd pick right up behind me and sing the rest of it, in perfect tune. Some of the songs he hadn't heard in months. It was amazing!

His new thing is dancing. His school has a dance group for the older kids, and he must have watched them practicing at some point. His memory apparently is also good at remembering dance routines.. because he's now talking about the dance group, and doing dance steps in front of the mirror, and it seems to be some sort of routine that he's memorized by watching.

He gets speech therapy sessions through the school, though few and far between, and should be getting occupational therapy through the hospital - but they're under-staffed and therefore haven't taken new people in a year or more. We never did go back to have him reassessed in the city.. but the local pediatrican took a real interest and has agreed to follow his progress so we will have someone who knows whats what helping us when and if we need.

Overall, he's a very friendly, easy-going kid with a whole lot of wonderful things to share with those around him. He has his challenges, but don't we all? In some ways, I envy his ability to live life oblivious of the social complications that many people have to deal with. He doesn't care about brand name clothes, doesn't care about competition with his peers, isn't at all prone to jealousy. How great life would be without worries like that? :)

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