Our journey through autism

Posts tagged ‘developmental pediatrician’

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.

Progress Acheived

Cant even think about this or write about this without thanking God for answering our prayers because none of this would have been possible without His Glory and without the prayers, love and thoughts of our family and friends.

Yesterday was Bilal’s 9 month follow up appointment at his developmental pediatrician. She sees him every 9 months and runs some tests, language, IQ, observation kind of questions which tells us his developmental level compared to typical peers.

In  August 2011, he was 3 years and 10 months (almost 4) but he scored the developmental level of a 2 year old. An almost 2 year gap between him and his peers. This is when she gave him the diagnosis of mild autism.

9 months later in May 2012 he was 4 years 8 months old and he scored at the developmental level of 4 years 1 month, a gap of only 7 months. From 2 years to 7 months. 9 months of school and private therapy. She was amazed and told me to just continue what we’re doing and she was optimistic but more surprised really.

Another 9 months later in February 2013 (at the age of 5 years, 5 months) he scored above average (6 years, Kindergarten level) in math, average in receptive language and on the lower end of average for writing skills. In just 18 months of school and therapies he has caught up with his peers developmentally and surpassed them in math. I couldn’t be happier, I’m so proud of him, I cant help the tears of happiness every time I think about it. The doctor was really impressed and excited about his future. I could see the progress and know he’s been doing amazingly with his therapists considering discharge in the near future but to be told his scores is a whole different level of happiness. Alhamdullilah! So he’s caught up with his peers intellectually, academically and developmentally, but we still have more to this journey, we’ve overcome our biggest hurdles, but the tests don’t show how he fits socially, his confidence, it doesn’t show how peers will treat him, and it sure doesn’t show us his future. This month I’m busy with kindergarten observations, phone calls and discussions with teachers and therapists to figure out the best placement for him next year. The developmental pediatrician agrees with me that both class settings of typical kindergarten or special ed class have benefits and risks and its really all up in the air, she would like a mix of both which isn’t possible but we could provide him with lots of resources and assistance if needed.  She wants to see him again in October after he’s started kindergarten and to see how he’s doing.

If someone would have told me or if I had stronger faith in God, back in August 2011 that in 2 years this is where we would be I wouldn’t have believed it, when you’re given a diagnosis you just feel devastated and negative, you do your best but that diagnosis like a black cloud is always on your mind you cant shake it off, and you keep having thoughts of this isn’t enough, you want more, you push and shove and I was really strict and stern with Bilal not allowing him to slack off and alhamdilluah we’ve been blessed, blessed with amazing grandparents from both sides that haven’t stopped praying for him, for friends and family, insurance, finances  dedicated therapists and teachers, and for our health and determination to keep going and not giving up.

I’ll be posting another post within the month detailing our kindergarten placement and IEP meeting results. and as always dont stop praying for Bilal and for continued progress in all aspects of his life inshaAllah.

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.

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