Our journey through autism

Posts tagged ‘evaluation’

Speech Therapy Discharge

Speech Graduate

A certificate that they printed out for Bilal’s hard work.

 

By the grace and blessings of God, after 2 years of weekly speech therapy Bilal has been discharged from private speech therapy. He went from barely speaking, unable to even answer the questions “What is your name?  how old are you?” to being an inquisitive chatterbox. Its been an incredible journey. His lack of speech was our first sign that something wasn’t right, it was the most obvious delay. I didn’t know that the reason he hated to color was because of fine motor and shoulder weakness. I didn’t know that he couldn’t kick or throw or catch a ball. all those physical things weren’t obvious, I thought he should reach those milestones later. So speech was the most obvious delay but also the quickest remedied and the ability to speak made a load of difference to his behavior.

His developmental pediatrician gave us a prescription for Children’s Healthcare of Atlanta (CHOA) for speech and OT, so there we went they asked to look at his IEP and the school evaluations and said they could help us with speech but not OT because it would then be a repetition of services and insurance problems and what not. So we went elsewhere for OT and they took him in right away and carried out their own evaluations and started therapy immediately even if it were a repetition he greatly needed all the therapy he could get then. So I wasn’t really happy with CHOA at first but he had an amazing relationship with his therapist Ms. Leslie so I stayed there. She met with him every Wednesday to work on all aspects of speech, whenever she wasn’t available for any reason they would re-schedule with the first available therapist. I’m sure they were all great therapists but they didn’t know Bilal and he didn’t know them, they just worked from Leslie’s notes so the session was quite pointless really, until once they rescheduled with Ms. Rhonda, she had a different way of doing things but she sang and hummed a lot and Bilal loved it and really enjoyed her sessions which were about only a handful of times during those 2 years. Last year’s evaluation Bilal scored a mildly below average in a lot of areas of the test, this year, he scored above average in vocabulary and comprehension and within average in all other areas. His lowest scores were in grammar or sentence recalling structure, within average but on the low side. He is required to get a re-evaluation once a year to make sure everything is still on track, or if he regresses or doesnt correct those minor mistakes soon. During our last session I’d get teary a lot, we’ve come a long way and these weekly sessions had become a part of our lives. I got thank you cards for Ms. Leslie, Ms. Rhonda and the receptionists at the front desk. I got them a cookie basket which they loved and devoured within the first hour after delivery. I will really miss them all at CHOA and we’re looking forward to the rest of our journey.

 

***Side Note***

I get a lot of traffic to the blog with people searching for speech therapy services in Riyadh, Saudi Arabia. It’s been two years since we were there and I don’t know if anything has changed since or not. At the time we only found speech therapy services provided by Sulayman Al-Habib Hospital on King Fahad Road, they had 3 therapists whom were usually overbooked, they were all Arab. A Saudi, a Jordanian and a Lebanese, we went with the Lebanese and she was willing to carry out the sessions in English, her English wasn’t perfect but it was good enough for basic speech. I dont know whether the other two use English or not and I really don’t know how Arabic speech therapy would go about with all the different accents and dialects, do they use that or use standard Arabic which is harder.  They didn’t have a designated time slot for each patient, it was a first come first serve basis, which isnt really effective with long term care. I would suggest to start there and ask the hospital or therapists about other options. I wish you all the best of luck, but I would suggest especially for expats to look for care outside of Saudi Arabia.

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Physical Therapy – Year 2

Last week was Bilal’s second annual physical therapy re-evaluation. I was looking forward to the re-evaluation and all of the re-evaluations for this year, his therapists are all saying what a good job he’s doing and how much progress he’s achieved and maybe looking at discharging him and so on. She said he did really well and has met all his goals except 2, those dealing with upper body strength and throwing/catching a ball. He’s achieved those goals relating to core strength, balance and coordination. He will no longer require hippo-therapy and will move all therapy to the gym, which I’ve always felt to be more beneficial to Bilal, on the horse I just feel he’s sitting there, yes I know he’s working his core and balance and all that but mainly he’s just sitting there, in the gym he’ll do a lot of target throwing and catching, and monkey bars and things to strengthen his upper body muscles. Because we’ve left the barn and moved to the gym we’re unable to find consistent weekly slots and finding available ones as they pop up or when someone cancels, so she sent us a home program where Bilal should try crawling in different ways, do the wheelbarrow, crab walk and etc, and boy do they really use your upper arms, as out of shape as I am those stung but he had a lot of fun and its good to do them with his younger brother as well.

 

Also this week I’ve joined the local YMCA, its mainly for me and getting fit and losing weight, but they offer so many things for the boys, rock wall climbing, swimming, gymnastics, karate, soccer, t-ball, flag football, basketball, volley ball, and little things as family movie night, parents day out, parents night out and all at really affordable prices. Looking forward to starting all that, have a wellness coach appointment on Tuesday and the fitness will begin for all of us God willing.

First Drawing

Bilal as Cowboy

 

Yesterday was Bilal’s annual re-evaluation for private OT, his therapist said he did so well and so much better than from the initial evaluation, while she was telling me about how well he did she started explaining this drawing, I interrupted her and asked “He drew this?” “By himself” she said yes and went on to explain that he didn’t attach his arms or feet to the drawing which indicates that he is unaware of his body in relation to space and blah blah blah OT technical talk that I don’t really understand but pretend I do lol. I was more proud of the fact that he can actually draw something that really resembles a boy, face, eyes, ears, mouth, body its prefect, I don’t really believe all that space continuum talk, he’s not even 5 and this is the first drawing I’ve seen him do, of course he doesn’t know how to attach his arms to the body. Bilal says its him as a cowboy, and he’s winking 😉 I have it pinned up on the fridge and his dad and I are really proud and impressed. I wanted to know more about the drawing than his evaluation, like did he totally draw this on his own, or did she draw one and told him to draw his own, or did she keep prompting him, now draw a head, with eyes, and a mouth or did she just say draw yourself and he took it from there. I’ll make sure to ask her next week, didn’t seem right to interrupt all her technical and important diagnosis to ask about a child’s scribble. lol

 

What do you think?

Progress Update

This post is way overdue and I really have no excuse, part busy and mainly part lazy. It’s been a little bit over a year since we got our US official diagnosis, a year of school and private therapy and activities. What a year its been! Its been busy but a good busy, yes I’m driving around pick up from school go to a therapy pick up baby bro from daycare get home and repeat all over again the next day, but so worth it alhamdullah. A week after school let out we had a follow up visit with his developmental pediatrician, she did a re-eval and he scored at the developmental age of 4 years 1 month (he was 4 years 8 months old at the time) a gap of only 7 months, she was really impressed and told me to continue what I was doing whatever it was and come back for another re-eval 9 months later in Feb. I was so happy and proud of Bilal in only 9 months of school and therapy he has grown almost 2 years developmentally, when we went in for that initial eval he was almost 4 but developmentally at the age of 2. I don’t know what it is that really made a difference, prayer mainly,  he was going to school everyday, private speech, OT, and PT, therapeutic riding, hippo-therapy  music therapy, adapted swimming, myofunctional therapy, adapted piano, adapted summer sports camp, a couple sessions of feeding, was it a particular thing or all of those put together that helped Bilal communicate and grow so much I will never really be able to pinpoint it. Also his younger brother is growing up and developing well and he has a constant playmate that might teach him things. Since we started school and therapy Bilal has turned into a totally different kid, no more tantrums or headbanging, he’s speaking in sentences, answering questions, started asking questions, he’s finally made progress with holding a pencil and writing, he states his feelings and opinions, he rarely gives me any trouble (unlike his little bro, pre-terrible twos). The really autistic behavior that still stands out I guess would be occasional toe walking, pacing when really bored, sometimes he’s locked in his own world when playing or concentrating on something, incorrect social interactions, eye contact avoidance, and picky eating. His pronunciation has improved greatly but still no L or R both are Y or W sounding but he’s working on it and its getting better.  I’m excited about what this new school year and therapies will bring for Bilal’s continued progress. I need to write another post soon about how he’s been doing these past 3 weeks since school as started again, I’ll try to write that one real soon. 

Just asking anyone who reads this to remember Bilal in your prayers and pray for continued growth and progress. Thank you.

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.

US autism journey

Before we had left the US for Saudi I was unable to get insurance or an evaluation for my son, my pediatrician said I could get him evaluated for free by the public school system and that I should add my name to the Marcus Autism Center’s waiting list, maybe by the time it was our turn we would have insurance. So I did that.

I call Marcus and they email me a medical history form to fill out and email back, they add me on the list and say it’s anywhere between 6-12 months. I call the elementary school and they mail me a packet of questionnaires to fill out and mail back, which I did the day before we traveled. This was all at the beginning of Nov 2010.

We come back to the US at the start of April and I get busy with phone calls, I call Marcus and ask what the status of my son’s placement on the list is and they tell me to come in for an initial evaluation by the head nurse for the beginning of May. I call the school and they said they were currently on spring break, so after spring break they schedule him for a hearing test for mid April and an evaluation for the beginning of May. He passed the hearing test, and both evaluations at Marcus and the school were filling out forms, answering questions and observing Bilal while he put puzzles together, or colored, he was asked to throw and kick a ball, to answer questions, follow a story book and the like. Marcus scheduled me for a psychological evaluation for the beginning of August and the school said we would have our first IEP meeting at the end of May. I had never heard the term IEP (individualized educational plan) which has the goals and objectives of my son’s progress according to his current level, what he should be able to master by the end of the semester or year. I learnt later that the IEP is a legal document, where parents may bring an educational advocate or lawyer to attend the meetings, where I can sue the school if I find they were not meeting my child’s needs adequately and that it is a BIG deal. Not knowing all that I attend the meeting bringing Bilal along, where he got bored and started acting up and kinda rushed the whole process, signing where they told me to sign and walking out the door before an hour has passed.  Thankfully I’m dealing with a good, honest and conscious team, they do want to help Bilal improve and reach his full potential, and they did address all his issues and write out a good plan for his IEP.  In June he was scheduled for an OT evaluation where I had to fill out yet another long questionnaire and Bilal was observed holding a pencil, writing, using scissors, building with blocks, doing puzzles, stringing beads and his preferred sitting position and the like, a week later had another IEP meeting this time without bringing Bilal and they just included his OT goals into it. The OT therapist asked me whether I’ve had him tested and have an official diagnosis or not, I told her I was on the waiting list at Marcus and just waiting she told me I should see a developmental pediatrician as they are better trained in diagnosing developmental delays and she suggested a doctor that had a short waiting list. I set up an appointment with her for the next month, a series of 3 appointments.

At the developmental pediatrician its much of the same, filling out forms, going over medical history from pregnancy until today, milestones reached, observing him as he played and did a quick medical check-up of weight, height, head circumference and muscle tone, etc… The second appointment was more like a child IQ test, having Bilal identify pictures, play with toys, copy patterns, building blocks, writing and a repetition mainly of his other visits with Marcus and the school. At this point Bilal had so gotten used to the process he had no trouble separating from us and playing along and following directions. The third appointment was at the beginning of August and it was the results and diagnosis. Even though I was told before that Bilal had mild autism and even though I read several books from the library about autism and could clearly see he had all the signs, having the developmental pediatrician tell me that it was in fact mild autism came as a shock, I was hoping it was anything else, holding on to that chance. She goes on to explain the CARSII (Childhood Autism Rating Scale, second edition) testing  scores, and she gives me pamphlets about autism, the Georgia chapter, flyers from feeding programs, social skill groups, a list of therapists, ABA (applied behavior analysis) therapists, FloorTime, nutritionists, the Toys R Us differently abled toy guide. She suggested doing ABA and maybe following a diet or going on supplements,  and I walk out devastated and overwhelmed, what do I do? who do I choose? she was so serious and made it feel like that’s it, he has autism and you should do all these therapies and live with it. I was lost, and I do the only thing I can do, start making phone calls, I take her doctor’s order for speech and OT therapy to the Children’s Healthcare of Atlanta, I get the blood testing done for Fragile X syndrome and food allergens, he was negative for both alhamdullah, and just read more about autism and all these different therapies both online and from books at the local library.

11 days later I have the results and diagnosis from the psychological evaluation at Marcus Center. According to the testing scale they used he would be diagnosed with high functioning autism and she first started by stating all of Bilal’s strong points and how well he was doing in certain areas and then she went on to explain his weak points, which were mainly social skills and fine motor weakness, he also has speech delay problems but not as low on the scale as his social and fine motor skills. She also suggested a list of therapists, and FloorTime. She said that she didnt think ABA would be beneficial for Bilal’s level and that FloorTime, speech and OT were adequate, she also suggested looking into a feeding program and doing something for fun like Karate, social skill  play groups, scouting, etc. I told her that with this meeting I feel more optimistic than after the developmental pediatrician’s visit, she said that maybe I’ve had time to understand and digest it all, could be, but her method of breaking the news and her suggested therapies made more sense. The Marcus center doesn’t support special diets or supplements as a treatment for autism which made it easier for me to deal with, crossing out something from the looong list of therapies suggested. She told me to apply to the Katie Beckett Deeming waiver and call her at any time for anything. I leave her office feeling pretty optimistic, we were finally done with the whole evaluation process (From Nov 2010 – August 2011), we had 2 similar opinions from 2 different areas of expertise, he was registered for school and we had our speech and OT scheduled and we could start prepared on this long journey ahead of us.

A Dream

I have a couple dreams I wish would happen. I wish for an accurate cause and cure for autism to be known. A lot of parents of autisitc children or any child with a disability would say they “wouldnt change their child even if a cure were discovered” Maybe I havent reached that state yet, weak faith, I dont know, I want a cure for autisim. If my son’s sweet, kind, forgiving nature is a symptom of autism then no I wouldnt want to cure that. But I would love to have not gone through that difficult behavorial phase, not to go through the devestation and stress of getting the diagnosis, I would love to be able to understand my son whenever he told me something, get rid of the frustration from both sides, cure his picky eating and limited diet habits, eliminate the odd humming and pacing. I would like a cure, so he would never be bullied for being different, a cure so that he can have friends and meaningful relationships, a cure to avoid stares or weird looks from others. This is all a dream, I cant go back in time and change anything and if a cure really were discovered or created I dont know whether I would line up for it or not, if it were to happen for real.

As there is no cure yet, this dream seems more attainable. Like I mentioned before, doctors and other parents will tell you once you get the diagnosis to seek a local support group, to talk with other parents that have been there, to find children similar to your child and set up play dates. I couldnt agree more with this. Most parents turn to their house of worship. I’ve read about several church based services, daycare options, playgroups for families with special needs. Here in Atlanta there is a large Jewish Autistic community also offereing the same services. Sadly there is no Muslim autisitic or special needs community for me to turn to. I’ve searched online countless times and find that Islam and autism dont go together for some reason. I’m seeking fatwas (religious decrees) about what my son’s religious responsiblities are, how much is he accountable for and what my role as a parent should be with teaching him his faith. I’m looking for other parents to learn from and see what they’ve done. They either dont want to communicate or are not on the world wide web. Its in the culture of many Arabs or Asians to see a disability as some kind of taboo, not seeking a diagnosis or hiding the child in shame, they lack awareness and its been said a lot that they think autism is  a form of mental retardation, which it obviously is not.

I dream of organizing an awareness campaign with the local mosques, maybe hiring a speaker from Autism Speaks, printing out fliers or brochures, having recources translated into Arabic or Urdu,  explaining to parents what the early warning signs are, urge them to have their children evaluated, that its nothing to be ashamed of, and maybe then I’ll find other families to form relationships with. I also wish that Arab doctors would get the training to recognize the signs to explore the area of developmental science that treating a child for physical illnesses is not enough, for Arabs to become therapists and special needs educators. Islam teaches us to be accepting of all races, ethnicitys, social backgrounds and of course mental capabilities, but sadly they show discrimination, they need to learn neuro-diversity. Its a term I learnt when I started joining the social networks of autism. It means that the same as we are accepting of different skin colors we should also be accepting of the different neuro development of others, of autism, Aspergers, Tourette, ADHD, these are all neuro-developmental disorders. Just like the color of their skin they were created this way and cant help it, its not the parents fault its nothing to be ashamed of. Since my son’s diagnosis, I’ve become more accpeting, when I see a child misbehaving in public I no longer think to myself “these parents have spoiled their child” I say to myself “this child may have some kind of disability and the parents are doing the best they can”.

I’ve met a mother from a Facebook group with a 4 year old son, with suspected Aspergers (she still hasnt received an official diagnosis) she was saying the same about not finding other Muslim parents outspoken with their children’s special needs, about the Islamic community’s lack of awareness. Her son’s application for a Pre-K program at an Islamic preschool was rejected, they said they do not deal with special needs, they said this without even understanding what his needs were. He has since been placed in a private pre-K school, in a regular class with a once weekly special needs teacher checking on him and he’s doing great masha Allah. This mother also dreams of starting an awareness group and maybe one day the both of us can make it work bringing awareness to the Islamic community and helping other parents seek the support they need.

This is the autism awareness ribbon, and April is national Autism Awareness month.

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