Our journey through autism

Posts tagged ‘progress’

Progress to date

Alhamdullah Bilal continues to make progress with all his therapies and classes. I’ve heard it more than once from his therapists that he’s their little success story. Quick update list below.

Speech: His private speech therapist is considering depending on his annual re-evaluation in June to discharge him. His myofunctional therapist is almost done with articulation and will soon move on to improving chewing and swallowing. I’m looking forward to that as he’s a messy eater, looks like he’s a famished caveman devouring his food, he tends to over-stuff and gag. Strangers understand him now clearly and he’s able to ask and answer questions. He can read some words, and spell and he’s great with math and numbers and patterns.

OT: His private OT therapist is considering depending on his annual re-evaluation in September to discharge him.

PT: In January he had his annual evaluation where he met all his goals except those concerning throwing/catching a ball and upper body strength. It’s mainly for fine tuning and a lot of the time she works him like an athlete getting specified exercise. He’s doing so well that his therapist is considering using Bilal’s progress in their case studies and she’s asked me to write a summary to be placed on the center’s website for other parents to read about.

Piano lessons: He’s down to only 1 color sticker on the piano, he knows his finger placement and his notes to date and he’s just a little music genius when he’s in the mood and not acting all silly. His teacher is saying he’ll be ready for the spring recital in June. Cant wait, he’ll do 2 solos and 1 duet with her.

Swimming: Bilal’s taking typical swim lessons at the YMCA and he’s completed the first class (PIKE 1) and just started PIKE 2, this class has a total of 4 kids and so far he’s the weakest swimmer but he can repeat it again if needed, overall he’s doing well.

Horseback riding: He’s riding solo, steering the horse by the reigns, going through the obstacle course all the while trotting and posting, he looks like a little cowboy.

Socially: The other day we were at McDonald’s and at the table behind us a group of boys maybe 7 years old were playing with their wind-up toys and Bilal was watching them the whole time while he ate with a smile on his face, one of their toys fell below our table and Bilal gave it back saying “here you go” and when the boy took it and said “Thank you” Bilal got this huge smile on his face it was adorable, we urged him to go play with them, so he went up “Can I play with you?” thankfully they said yeah and he tagged around with them the whole time, not really with them as they were already friends and older but they still included him. He didn’t look weird only shy like any typical kid.  He’s playing really well with his younger brother, sharing, taking turns, asking and answering questions, fighting, again all typical. Another thing, we’re currently potty training his little brother and doing the whole sticker chart every time he goes in the potty so the first day we were of course making a big deal, cheering, stickers, high fives etc and Bilal was getting jealous as expected wanting a sticker when he went to the bathroom too. I sat him down and explained to him that he was feeling jealous but that he shouldn’t because he’s a big boy been using the potty for 3 years now and when he was learning he got stickers and toys, and a fancy potty chair and he learnt and did a good job but now it’s his brother’s turn. Just needed to say it once after that every time his brother used the potty he would cheer along with us and run and get the sticker chart for his brother looking truly and sincerely happy for him.

Other: due to his speech delays we concentrated only on English therapy and speaking it around the house. Now we’ve added more Arabic and he’s picking it up slowly a few words, not too badly pronounced and soon inshaAllah we want to include him in a Sunday program to learn more Arabic and Quran and have more Arab or Muslim peer interactions and maybe friends. They also do a little of Spanish at school which he enjoys and picking it up well.

I cant say it enough alhamdullah (Thank God) he’s doing amazing and I also cant help I get all teary when I think about it, so proud of him.

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.

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.

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

Equine Therapy

Also known as hippo-therapy which basically is horseback riding therapy, it is a well known and accepted therapy for those on the autism spectrum. Horseback riding in itself teaches discipline, strength and posture while the movement of the horse teaches the child balance. Dealing with the horse teaches the child compassion towards animals and how to treat them nicely. Used as therapy they also include brushing the horse before and after riding as a sensory stimulation, the child helps with the saddle for fine motor skills, on the horse they have the child use his words to command the horse to “go” and “stop”, they have the child hold on with 1 hand or no hands (for balance and vestibular training), they had little games of stopping the horse leaning down and picking up a toy and dropping it off at another area, the therapists would describe the toy or animal for speech therapy, they also had him throw bean bags into a bucket from atop the horse and pick rings and slide them on horizontal poles. They also let the child ride backwards for awhile also for balance and vestibular training.

Bilal has been in speech and OT for 4 months now and making a lot of progress alhamdullah mashaAllah so we decided we could move onto something else, something beneficial but also fun, so we looked into horseback riding. Last month we had gone to a county fair and they had pony rides and Bilal loved it, he sat tall and held the saddle on his own and had a lot of fun so therapy would be great. When we got to the farm and he could see all the horses in the distance he got really excited and rushed into it, no apprehension towards the new therapists and he followed all directions really well. So we’ve decided to continue with it, an hour a week every weekend weather permitting inshaAllah it will be of benefit to him.

I found the therapy location through the Autism Speaks resource guide website. It’s called Brecht Stables and Dustin’s Place, it was founded by a mother of a child (Dustin) with Down’s Syndrome to teach children with disabilities. It is in Cumming, GA. She has a website, Facebook page (lots of pictures of the farm, horses and her family), and Twitter account.

In Islam there is a Hadith (a saying for the Prophet Mohammed peace be upon him) in which he said “Teach your children swimming, archery and horse riding”  it means that children should grow up fit and knowledgeable of such recreational activities, which at the time were essential to survival, now it could be adapted to mean swimming and car driving but horseback riding is still important as the benefits are so many for children with disabilities and for those typically developing.

Where we are in our journey

Bilal is now 4 years and 1 month old. Since he turned 3 he has progressed a lot. When he first turned 3 there was still some regression, his baby brother was born, starting daycare, and lots of traveling all that would be difficult on a typical child more so one with autism, he’s come so far from “eh eh eh” with pulling and pushing to several full sentences, to refusing to feed himself to doing quiet well with spoon and fork. He has mastered the use of the computer, by typing his name to login and opening Internet Explorer and visiting his websites. Disney Junior, PBS, and Starfall playing videos, or games I think he’s even found a couple more websites he enjoys visiting. He knows his numbers from 1-20, he recognizes the letters of the alphabet in both capital and small, he enjoys looking at story books now, learning to write, he does a really good capital J. His teacher says he is communicating and playing well with his classmates and calls a couple of them as his friends, he’s making progress on all his IEP goals and I guess most comforting to me is his behavior has improved a lot, we seldom have out blown tantrums or meltdowns, rarely have any more head banging or screaming, I cant remember when I last saw him toe walk. He loves his little brother, lots of “big hugs” during the day, they laugh and play together and often times Bilal would help out when Sulayman starts crying asking for his bottle and giving it to him. Alhamdullah its been a good year and I’m optimistic and looking forward to more progress insha Allah. We still have a long journey ahead of us.

 

I am unsure what I want to write down exactly, The difficult part I believe is behind us and we will continue forward with more therapy, with school, IEP’s, and whatever sound treatments come up in the future. I still dont know what else I want to do with this blog, I’ll still write about therapy sessions, I want to write about Bilal’s little brother, I want to share articles I read online, new findings or studies on autism that seem to appear almost everyday now but with still no clear underlying cause or cure. I want to mention therapy centers we visit, the therapists, and doctors we’ve spoken to, to help in a more local way. I still dream of bringing awareness to the Muslim community, I wish to make a close true friend who’s been there and possibly our boys could also become friends. I would like suggestions and ideas from any readers of the blog, I really want to make this blog worthwhile for me and for anyone visiting. I hope I can achieve all that and I hope you’ll stick around for more and to help out as well. Thank you.

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