Our journey through autism

Archive for the ‘regression’ Category

Boredom

Its the summer a long vacation with long days, a lot of time to fill up and keep a child occupied, a child that doesn’t know how to fill his time on his own, used to having structure and told what to do. Bilal gets bored quickly and easily. He wakes up and asks to play on the XBox, he plays for a few minutes and then turns it off and turns on the laptop to watch a couple episodes of Power Rangers, he then shuts it and starts pacing around the house, he then asks for the XBox again and so on and so forth. He might play or fight with his little brother we’ll go attend one of his therapies etc but that’s pretty much it. He’s not into arts and crafts or books, so it isn’t easy for me to figure out something for him to do to keep occupied, the weather is hot and indoor activities are usually costly. Summer camps are essential for him and just trying to change it up. A board game or legos, or cards, play doh, a day at the grandparents, a shopping trip etc. I used to get bored easily when I was a teenager and would state quite often “I’m bored!” my mom says I take after my uncle, but we both didn’t pace around the house, I tried to keep occupied by watching TV or reading books but Bilal doesnt keep to anything long enough. He still doesnt use the phase “I’m bored” but his actions say it all.

I’ve seen that a couple people used the search term “summer regression” when visiting my blog, thankfully Bilal doesnt regress during the summer, whatever skills he’s learnt over the year he retains, we also keep up with his weekly therapies so skills are kept intact, its the boredom and behavior issues that arise during the summer or vacations longer than 3 days. He may ignore rules, or fight with his brother more, more frustrated and angry, all something to amuse himself with when he’s bored.

We’ve started summer camp this week, even though its only 3 hours in the morning its something that tires him out and fills a small void in the day. In 2 weeks he starts the YMCA camp which is 7 hours long which I think will be perfect in keeping him occupied and worn out.

Yesterday he had a fever and complained of leg pain, I’m guessing a bad case of growing pains, but he was able to take a 4 hour nap during the day, something he hasnt done since he was a baby. He woke up refreshed, happy, well behaved and really chatty. It was really a recharge boost. His body really needs the naps and the rest I wish he could do it more often, it doesnt have to be a daily thing but every now and then, I believe its good for him. He sleeps about 9 hours or less at night, never naps not even in the car, he only naps when he has a fever and usually just for a little while the 4 hours thing was amazing.

 

Hope ya’ll are having a great fun filled summer.

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School Year in Review

We just started our summer vacation. Bilal has completed a full year of special ed pre-k, and he’s done great, met and exceeded all expectations. He’s made so much progress in only 9 months. He started the school year barely speaking, sensory issues, and almost no eye contact at all. His IEP goals included stating full name, age, and gender when asked, to sit still for 5-8 minutes, to have no aversions towards messy media, etc. very basic things. In February he had met all these goals and I asked for an IEP amendment to keep him challenged and we wrote up a whole new IEP with new goals which he’s made progress in and if he keeps it up inshaAllah he’ll have met them all by the time of our next IEP meeting at the end of September. We’ve been very lucky and blessed to have an amazing team that really care for Bilal and his progress and who genuinely adore him. In December his class teacher left and for 6-8 weeks the TA’s and substitutes took over, until the 1st grade teacher transferred to become a special ed teacher. I was really sad to see his teacher go, she was very dedicated and I didn’t want a change in schooling so soon. After a bit of a slow start his new teacher learnt the ropes and has been great with Bilal and his goals, listening to all my concerns and helping me set up a PT evaluation and the IEP amendment meeting. His TAs are amazing people. Ms. English works with special needs teenagers and adults, helps out at a women’s shelter she is such a dedicated caring individual and Bilal was blessed to have someone like her. The other TA Ms. Abernathy is a young teacher still studying for her masters in special education, Bilal has a crush on her, she always plays with him, makes him laugh and helps motivate him with her own personal iPad, sadly she wont be there next year as the county has transferred her elsewhere. The two most important members of the team are his speech and OT therapists, Speech has come so far speaking in sentences now, answering most questions and started using pronouns correctly, OT is the one area where he didn’t make leaping bounds of improvement as his fine motor issues seem to be difficult to overcome, he still hates to color or write, but he can kinda scribble out his name, and he has overcome his aversion to playdoh, stickers and any other messy media.

Towards the end of the year I started thinking of what to get his teachers and therapists as “Thank you” gifts and as I’m not at all crafty or creative I decided to seek help elsewhere. Went to the local farmer’s market and found a young women selling her own organic hand made soaps, so I had her make little baggies for the teachers and I quickly wrote out thank you notes and gave them to the teachers at the End of Year Party. The next day they all sent home with Bilal their own thank you notes, thanking me for the gift but more thanks for letting me teach Bilal and how amazing he is and what a great sense of humor he has, I was speechless, I still get teary thinking about it, and feel really blessed to have such amazing dedicated people in our lives. I also got his bus driver and the bus driver assistant the same little gift bag and got thank you cards from them as well.

Now its summer and its loooong, 3 whole months I’m not sure how we’ll fill it up, his therapies are going on as usual, a session a week, we’ll be adding the myofunctional therapy and his teachers informed me of a 2 weeks sports camp in June, Ramadan is in July but I worry about him getting bored and regressing.

Next year he’ll be repeating pre-k as he has a late September birthday, he’ll be one of the oldest if not the oldest one in his class and he’ll be placed with Ms. Tiffany the other special ed teacher, she’ll be in charge of the 4+ year olds while his current teacher Ms. Bethany will have the 3 year olds. Its a little of a change, new teacher and TA’s but not drastic as he knows them and he’ll have the same therapists, cant wait until we start and get back to our typical routines.

First day of school – August 15th 2011

Last day of school – May 18 2012

Feeding Therapy

I apologize for not updating recently, just been busy with house stuff and also I’ve picked up some books from the library and when I start reading a good book I dont want to do anything else. Writing out this post here before I forgot the details of the visit.

I finally got Bilal an appointment for a feeding therapy evaluation, first sent the paperwork to Marcus and they transferred it to Children’s Healthcare of Atlanta, the same rehab center we go to for speech therapy. I was told to bring in a fruit cup, beef jerky, string cheese, vegetable chips, juice and milk, to make sure there were items he liked and items he didnt. I had no idea what the evaluation would entail really, and what a feeding program was. Bilal since he turned 3 has become a picky eater, he suddenly dropped certain foods and will no longer eat them and we’re down to a list of only 10 accepted foods, if I tried offereing him anything else he would either ignore it or spit or gag on it, not wanting to deal with vomit I just go with what he wants and not push it, I decided to leave that to a professional to deal with. I was told that he shouldnt eat too soon before the evaluation as he was required to eat in front of her, so he only got breakfast and snack at school, no lunch.

We get there and are introduced to the occupational therapist, we go over Bilal’s eating history, reflux, when he dropped foods, eating habits and what he eats. She discussed seating arrangements and says using a booster or a special chair  that provided sensory input for him to push his feet against, this was important so that he wouldnt move around too much while seated which is an issue at home and he can concentrate better on his meal. She explained that eating uses all the senses and for a child with autism that can be too much to handle, she suggested we use the sensory brush or bounce mat before meals. To blow bubbles, whistles, balloons for oral exercise, wash hands and sit down to eat. I am to place 3 food items on his plate 1 from each food group, with at least 1 of them a preferred food, and he has to show any kind of interaction with the non preferred ones, look at it, touch it, smell it, put against his lips, teeth or place it in his mouth, I should model for him and give him a lot of praise and positive reinforcement, meals should last no more than half an hour, and whatever he wouldn’t eat he can than “kiss bye bye” before throwing into another plate or the garbage, the idea being that he touches it with his lips, or he can put in into his mouth and spit it out in “shooting rockets” form again being he tasted the food. I should also change my language from “Can you eat this?” to “You can eat this” no questions or begging just stating it as a matter of fact that this is what we will eat. With time and practice and patience he will become less sensitive to new food, flavors, textures and will learn to eat a variety of food. She watched him eat a Mozzarella cheese stick and noted that he had some minor oral motor weakness, because he chewed with his mouth open and didn’t push the food around with his tongue just let it roll around under his teeth. So I was to follow this home program and see her once every other week with new tips and suggestions and guidelines to follow. She said I should continue only offereing a drink (juices like V8 Fusion or Fruitables) after he completes his meal, and use a lot of sneaky chef ideas by hiding pureed vegetables in foods he already eats.

I understand and agree with everything she says but some of it is a lot of work, change of habits, more cooking (I hate cooking) and I’m also teaching the baby to eat as well and going around his teething problems and bottle attachment issues and its just easier offering Bilal what he would eat with no special tactics and getting it over and done with, but it is therapy and I’ll find a way to stick to it, just as I am sticking to his schedules, taking him to therapy and discussing with his teacher and therapists ways to fight his autism whether that be social, speech, fine motor or oral motor delays.

The Regression

Previous post mentioned possible early signs that we missed or ignored, here is when we stopped denying to our selves there was a problem, when we noticed regression and when we finally asked doctors for answers. This all started between 2 and half closer to 3 years of age.

Socially – Bilal has 5 cousins from his dad’s side that we used to see occasionally,  Y a boy was 12, MR a girl was 11, MS a boy was 7, and S a girl was just 5 weeks younger than Bilal. Bilal got really excited to see them, and especially loved MS, even though he was older they got along great. He totally ignored S as if she didnt exist, she was larger and taller than him and way more outspoken with a strong personality. Around 2.5 Bilal suddenly seemed afraid of them when they came over and he was unhappy with them being there in his space and playing with his toys, one visit he threw so many crying/screaming fits that I had no choice but to put him to bed early while they were still there. This is when my husband first starting suspecting something wasnt quite right with Bilal, but denial just said it was a phase and its because we dont get to see them enough that lead to his anti-social behavior.

Own world – I was finding it more and more difficult to relate or play with Bilal, the lack of speech was very frustrating for both of us, his only way of communication was to take our hand and lead us to what he wanted and point and go “eh eih”. He wanted to do things his own way which to me didnt make any sense and when I tried to show him he would get angry, I was also pregnant at the time and constantly exhausted so used that as my excuse for lack of trying harder.

Lack of stranger anxiety – No matter where we were and who was around us if I told Bilal not to do something (grab items from the shelves or play with the salt shaker, etc) he would run towards the first person he saw and hug them or throw his arms around their leg, and I mean anyone, store clerks, waiters, friends or acquaintances. It was very disturbing because he opened himself to the danger of kidnapping or molestation and I didn’t know how to make him understand that was inappropriate. Whenever I told him No I would quickly grab his arm and make sure he didn’t turn to anyone.

Pacing – I remember the first time Bilal paced, we were at my parents for the day and after having gotten ready to go with shoes on and all that my dad and hubby started another conversation at the door, Bilal got bored and started running along with humming from the front door of the apartment to the computer room inside. He was really engrossed in just going back and forth I found it odd but thought it was his way to deal with boredom. I didnt see it again for a couple of weeks and then it became a nightly habit, I noticed he paced when he was bored and didnt have anything else to do as it increased I became more and more alarmed but didnt know what to do about it and kinda ignored it and tried to distract him into doing something else.

Picky Eating – Bilal used to accept any kind of food, other than the chance of vomiting he had no trouble with me feeding him. He ate a well balanced diet, he didnt taste chocolate until the age of 2, hasnt yet tasted soda drinks, and I wasnt worried about it, he did eat better and more when we went to my mom’s house but overall no problems, at the age of three he started only wanting to eat white rice, plain toast and a list of other things, rejected a lot of what he previously ate, but I thought that was just a phase and he was testing me and it would soon pass. It hasnt, very limited diet.

Behavior – His behavior kept on getting more and more difficult to deal with, if I told him not to do something he would stand there and scream and scream at the top of his lungs for a few minutes and nothing I could say or do would stop him. I tried it all, time outs, naughty corner, 1, 2, 3, shouting, spanking, removing toys, he didnt care when something was taken from him, the spanking didnt affect him, it was very frustrating and several times I felt like I was at the end of my rope not knowing what to do. He tested me a lot, he would do something he knows is wrong and look at me to see my reaction, he continued to do it even while I was punishing him. His behavior was a bit better with his father or my mother but overall very difficult.

Potty Training – We started potty training at 2 and a half, I had downloaded the Elmo’s Potty Video and he loved it and fell in love with all things Elmo, I had him in nothing but underwear and lots of praise and M&M’s as rewards, within 5 days he was peepee trained and by the end of the month he was poopoo trained we rarely had accidents and everything seemed perfect. 9 months later a month before I’m due to give birth Bilal fell in love with computers, he would be so engrossed with whatever he was clicking at that he’d forget himself and wet himself, this happened a few times and then he started soiling himself as well, and nothing seemed to work, this was a very difficult time for me, this continued on for another month. Now we rarely ever have any accidents of any kind, in underwear all day and at night in a Pull-Up and since he started school its almost always dry in the morning.

Comparison – Like any parent you cant help but compare your kid to some other kid, and this is what I did when we would meet his cousin S, like I said S is just 5 weeks younger than Bilal so they should be very similar developmentally. S was speaking in full sentences, she made decisions, had a strong opinion about what she wanted, she fed herself with a spoon almost flawlessly, she could pedal her bike,  it looked like she was a couple years older than Bilal. It made me very worried but again denial got me through it. S was the youngest of 4, she had 4 older cousins (from her dad’s side) that practically lived with them and they lived in a very social environment and saw a lot of people on an almost daily basis. Bilal on the other hand was an only child that didnt get to see anyone almost at all and would catch up normally when provided the same opportunities as his cousin.

Daycare – When Bilal was 3 years old we were in the US at the time for his brother’s birth, I tried to get him checked out for speech delays but with no insurance and his father working abroad it was difficult to get anything done so we decided to put him into daycare that way he would interact with children his age and be forced to communicate. I placed him in a Bright Horizons branch close by and he quickly got the hang of things and was doing really well. I even attended with him at the beginning and got to see for myself how he reacted and such. He had several classmates who seemed quiet the whole day and barely spoke they were dual citizens and English was their second language so I felt Bilal fit in well with them, he didnt really play with them and on the playground he liked to do his own thing but he didn’t seem to have any problems. The week of Halloween they had a dress up parade and they would trick or treat from class to class with the teachers giving them candy or treats, they all lined up and got super excited to get the little gifts they would grab at them and run on to the next class wanting more, Bilal on the other hand would walk into the class and instead of taking the treat would go explore that classroom until a teacher would take him by the hand to the next class and again he would explore that other class, that day his father finally admitted to himself that Bilal wasn’t normal, wasnt like the other kids at all. I made up the excuse that he’s never seen Halloween before doesnt understand that it’s all about the costume and candy. He was in that daycare for 6 weeks and he had just about started using one word sentences when we went back to Saudi, there I searched for a daycare and found a really good one called Little Scholars we placed Bilal in that and he made slow progress.

Next post I’ll discuss starting speech therapy and hearing “autism” for the first time.

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