Our journey through autism

Archive for May, 2012

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

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Myofunctional Therapy

Myofunctional therapy is basically therapy of the facial and oral muscles, (tongue, lips, mouth, jaw, cheeks, etc…) A couple weeks ago Bilal’s OT therapist was traveling abroad and the owner of the facility took over for 4 sessions, she wasnt used to his speech patterns and asked whether he was getting any speech therapy and she suggested that I get him evaluated by her friend and colleague for this myofunctional therapy. We set an appointment, for the beginning of the month but he woke up with a slight fever that day so we rescheduled for the 15th of May. We go in and Dr. Sharon Wexler starts her evaluation, she checks his stance, posture and neck alignment, she explains to me with a mouth and tongue model what a normal swallow should look like and what a lot of children with autism look like. She says infants have a thrust swallow, as they nurse and deal only with liquids they move their tongues inwards and outwards as they swallow as they mature and start taking in solids they swallow by moving their tongues upwards and backwards. As with many of Bilal’s fine motor delays his tongue thrust never developed properly,  also while your mouth is shut and relaxed the tongue usually rests and touches the roof of your mouth but for Bilal its at the bottom, when asked to swallow with your teeth set closed your tongue goes up but for Bilal he had to push it out. She had him bite and chew an animal cracker, he bites with his side teeth and takes a lot of small bites, and swallows it as it is. A normal person will usually bite with his front teeth, chew, move the food around his mouth with his tongue and gather it towards the back and swallow, all this is done unconsciously and involuntary but that’s how it is done. She also had him chase a lollipop around with his tongue sticking out and it took him some effort to stick his tongue out at the correct side, he’s also unable to lift his tongue for the “LLL” position. His tongue weakness explains why he takes a lot of small continuous bites of food so that the new food will push the other food down as he cant manage to swallow it correctly, that’s why he overstuffed his mouth as well. She then measured the strength of his tongue and found it to be weak, and then finally she had him identify some pictures to see how he pronounced those words, he misses a lot of letters but not always indicating a weakness. The good news is that his mouth and lips are fine, no drooling or other issues. She says he’s at the perfect age for this therapy as he’s old enough to understand and follow directions, and to learn to be conscious of his swallow and learn the proper method of doing it. She says speech therapy is great and all, for vocabulary and grammar development but for pronunciation its all wrong trying to build on weak foundations, it will never build up correctly. She does half hour sessions with him once a week while we practice at home the rest of the week. Her testimonials say that parents noticed results within 6 months. It was a very interesting and beneficial evaluation explained a lot of his eating habits, why he only eats these particular foods because its what he can manage, chew and swallow on his own, he doesnt take any hard foods which are apples with the peel or meats, everything he eats either breaks down or melts easily and gets pushed back almost on its own, its also why he chews with his mouth open and why he’s a messy eater. She’s still in the research process of the relationship between reflux and tongue weakness, but it makes sense, she says that with this method of swallowing an air pocket gathers and when he burps it pushes up all the food again, Bilal had reflux until he was 18 months. I’m looking forward to this therapy and the results we’ll get, better prouounciation leading to better communication and better eating habits and hopefully a more varied diet.

The only drawback is that The Institute of Myofunctional Studies does not file insurance claims, I have to send in the receipts and wait for them to refund me, so its expensive and time consuming and there is the risk of the insurance company delaying refunds and making up stories of not receiving it, getting lost in the mail and so on, but its worth it inshaAllah.

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