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Section 5 - Family Journal I Just Discovered My Child is Autistic (doc) | Thomas Then & Now | "Ours" - A Poem by Linda Ettinger Thank-you Cards Return to Table of Contents Parent Resource Package Section 5 - Family Journal (Download Section 5) Thomas Then and Now A story written by a parent of a child with an Autistic Spectrum Disorder. Thomas was a long skinny baby, and hungry. He fed for an hour every second hour with his eyes tightly screwed up shut. He liked to be held firmly but didn't like to be looked at. When he was a little older he would reach up and push my head to one side so I could not look at him, or else he could not settle and sleep. As a toddler he clearly understood us when he wanted to, though at times we wondered if he was deaf. He could name objects that we pointed to, if he wanted to, but didn't use speech to communicate. He never indicated when he was thirsty or hungry and didn't seem to recognize people. He didn't greet people that he knew. Change was difficult for him and he began to have extreme temper tantrums, at times for no discernible cause. Clearly something was wrong. The first thing that we worked on was communication, Thomas had no idea that this was necessary and needed to be taught. Once he got the hang of it he caught up with his language development and could tell us what he wanted, but tended to approach things in a very scientific, logical fashion. He used the same whole sentences again and again, almost as if they were single words. His vocabulary was excellent but he used words in an eccentric way. Later he began to talk at people rather than with them, usually about things that interested him and at great length? not being able to stop or cope with being interrupted until he had said everything that he wanted to say. Thomas' play had consisted of building towers and railway lines. He didn't want to play with any one and would only allow someone to join him if a specific task was required of them, telling them to go once this was done. We taught him how to play by introducing Thomas the Tank Engine? this train had facial expressions and had friends and interacted with them! Our Thomas learnt about facial expression and gradually we introduced more trains to his track and acted out stories with them? he was more interested in making complicated lay outs of the track pieces! We added the bus, tractor and helicopter, and then we added people! His play was expanded in other areas too with other trains, trucks and eventually a dolls house populated with monsters? his interest at that time. Thomas didn't understand the tone of peoples voice and didn't pick up on social cues. Everything had to be explained to him. I found myself getting odd looks in public when I said things like, 'Listen to my voice. This is a low and slow voice. That means that I am getting cross.' This wasn't the only reason that we received odd looks. Thomas found shopping malls and other public places very difficult. He would have temper tantrums or act oddly, pulling faces and flapping his hands. We would go to the mall every weekend, not to shop but to help Thomas learn how to cope. He had to be able to go out in public. He started off in the trolley with a coat over him for a few minutes, and we moved to longer times, not needing to hide under the coat, and eventually actually shopping! Thomas' motor skills were a little delayed. We concentrated on the things that he needed to know. It didn't matter if he couldn't catch a ball as he couldn't see the point of playing catch anyway. It didn't matter if he couldn't use cutlery, at least he was now eating a healthy diet after trying to severely restrict what and how he ate. We stuck to finger foods. Toilet training was another challenge requiring an approach tailored to his interests? he couldn't see the point and was still occasionally in diapers at 5 1/2! He couldn't do two things at the same time? so he could not walk and talk or run and stop! Thomas started school a year later than usual, as he'd not been ready at the standard age. He attended for 1 1/2 hours a day in the learning center with no other children present. Gradually other children were introduced and his school day lengthened. He was slowly introduced to the regular classroom once he was used to being in a group. Thomas is now ten and in grade four: attending school full time in the regular class room with a teachers aid. He has an individual program to deal with his social and behavioral needs. He needs help with some language-based subjects and choices are challenging for him. He has difficulty with writing, because of his motor problems, and needs an individual approach to math because he is ahead of his grade! He still tends to talk at people but can hold a conversation. He still has over riding interests but they are less extreme? more of an intense hobby. He copes in crowded places, even in airports. He still loses his temper but is able to catch himself faster and usually doesn't deliberately hurt people when he is angry. He is beginning to anticipate other emotional reactions to things. If I am sad he will comfort me. Yesterday, for the first time, he blushed! I know he will probably always be eccentric but in the end I think he will be just fine. After all he has already achieved more, in just 8 years, than I thought he would in a lifetime. There have been many times when I have thought I could not cope, but we did. There have been many times when I thought that we were getting nowhere, but over time changes have occurred. It was what we did in those early years that made all the difference: it has acted as a foundation for the work that we and Thomas do now. OURS by Linda Ettinger Children breathe, they sleep and eat. It's part of life for most you meet! They run, they play, when told they'll walk. By three they will have learned to talk! These things will come! Ours will learn! Why is it then that we're concerned? Children laugh, some will cry. Most of the time their mums know why! They love to sit and read a book. "See Spot run - Come take a look." These things will come! Ours will learn! Why is it then that we're concerned? Children bathe, brush teeth and dress. You brush their hair when it's a mess! They love to cuddle, hug and kiss. These times with mum they would not miss! These things will come! Ours will learn! Why is it then that we're concerned? The years go by, we help them grow. The time involved one could not know! She works so hard --- these things to learn! THAT is why we are concerned! BECAUSE SHE'S OURS!!! Author: Linda Ettinger Parent of a child with Autism Thank-You Cards What are these "thank-you" cards for? Parents of children with Autistic Spectrum Disorders (ASD) suggested the "thank-you" card shown below. These cards can be used as an educational tool should someone require additional information about ASD. Some of these cards have been included in your package should you wish to use them. How can they be used? Parents of children with ASD have said that they might have given this card to people or organizations that were dealing with their child but who did not have the time to speak to them about ASD. They might also be helpful when other people witness actions that might require additional explanation or a better understanding of a parent's reaction to specific behaviours. The card could be left with them and they could call EIIS for more information about ASD rather then relying on you as a parent to inform them. From a parent's perspective: To grocery store managers for their staff or cashiers who may see my child behaving inappropriately or slowing things down by lining up items before they can be scanned. For Church officials, especially the minister, priest or rabbi who will be tolerating my child's noisy echolalia and hyperactive behaviours. To Sunday school staff too. At Public Park "run-ins". Other parent's witness my child doing things most parents would never tolerate. For example, swinging VERY high while STANDING up, eating sand, or stimming. Other parents might be afraid to ask why mine is not playing or talking with their children or not taking turns on the swing. As a parent, I try to explain the best I can before my child has me running to the other side of the playground. A place they could contact afterwards for more information would be great. To help prepare recreational establishments or community organizations that host events my family is planning to attend (variety or craft shows, auctions, holiday celebrations, etc). To others who are NOT understanding or tolerant of my child. They would have probably trashed the card, but it would have given me the opportunity to sarcastically "thank" them for understanding. To give to other parents whose children are enrolled in activities with the siblings of my child with ASD. For example, in soccer or at summer camp. For neighbors who are listening to my child's very loud signing. Or seeing my child riding his/her scooter up their driveways or picking their flowers or chasing their cat or running in front of their cars. Maybe ringing their doorbell and going right in if the door is open. Or drinking their drink or eating their food if they are visiting me. To other people in my child's community like - the school bus drivers or public bus services; preschool staff or caregivers; even babysitters or public pool lifeguards; or pharmacists. But mainly, this card would serve as an opportunity for others to follow-up on autism. Instead of being left with "what did she say her child had?" - they would know where to get additional information. Basically, this card is for anyone that my child makes an impression on, good or bad, who needs to know more about autism to understand and accept my child as the wonderful little person he or she is.

Christina Schulze-Allen - EIIS Regional Coordinator Western Regional CAYAC, P.O. Box 520, Middleton Nova Scotia, B0S 1P0 Email: csa.cyiwg@ns.sympatico.ca	Phone: (902) 825-5377   Fax: (902) 825-5379
Supported by Kings Regional Rehabilitation Centre Technical Resource Centre