Our journey through autism

Posts tagged ‘PT’

Other Progress

The summer was all about IM and SLP, after those programs finished he continued regular OT.

Occupational therapy: Bilal had major improvements since last year and we thought he was getting close to discharge, every time this comes up, I get super excited to be finally done with it all, but also really nervous, afraid to stop therapy but still need it. His evaluation came up beginning of September and he did well, but still had weaknesses with hand/eye coordination and more visual aspects of OT. Also his handwriting does need improvement so it was determined to continue with OT for at least another year and then re-evaluate again.

Vision therapy: Bilal did once a week vision therapy for the prescribed 6 month program and did really well and strengthened his eyes. She told us to continue with some therapies at home and come back in once a month and then once every 3 months just to keep track and make sure of things. Future therapies would require a bit more maturity to do activities like the 90s popular Magic Eye, relaxing and pulling certain eye muscles to see hidden images. She also said the light box therapy of SLP would be beneficial for Bilal’s convergence and eye teaming issues. In all honesty we haven’t kept up with our vision therapy exercises like we should. We really need to add it back in somehow because his OT and PT therapists say he’ll either need glasses or more vision therapy.

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Magic Eye*

Physical Therapy: Earlier in the year Bilal was temporarily discharged from PT, he wasn’t gaining anymore from it, but the evaluation test didn’t give us a good score. There is a test for below 6 years old, that Bilal (then 6 years old) did great on. The other test for above 6 year old, he did really bad on. His therapist suggested to re-test him after he completed his summer intensive to really see whether he would need more PT or not but in the mean time we would put therapy on hold. Mid-September he was re-evaluated for PT on the 6+ years test and he did great, passed on all areas and she said the IM made a huge difference with speed, precision and overall focus and attention.

Myofunctional: We are still doing myofunctional therapy once a week, almost ready to move on to phase 2 swallows. Its a slow therapy, as its hard to change eating habits, something that has to be done every day and he can satisfy his hunger even if he eats incorrectly. A change like this has to be a conscious effort from Bilal himself and there is just no 5-7 year old that would bother unless his mother constantly reminds him.

Speech: He was discharged from private speech therapy in June 2013 and from school based speech therapy at the end of Kindergarten. He is speaking clearly with vast vocabulary and infrequent grammatical errors. His OT therapist suggested that he be evaluated for speech again which concerned me and it turns out that the specialists are called Speech and Language pathologists, and he needs help with the language part now not speech and articulation. Bilal has major trouble writing and putting together a sentence, he may know the answer verbally, but tell him to write it down and he’s lost, he cannot organize his thoughts into words to be written. Like with everything else, things don’t come naturally to Bilal, he has to be taught and trained to do things, to have tasks broken down into smaller parts, and then put all together in time as he masters each little goal. He will be evaluated next month and depending on the results on that will be taught how to organize his thoughts and write them, for example, creating word boxes, learning sentence parts, editing and proof reading, its like an English language lesson but therapy. This is exactly what Bilal needs, with homework he either has no clue what to write or he talks too much and doesn’t directly answer what the question is asking for. Looking forward to this therapy, the therapist I met said that after 6 weeks with her we’d see improvements. She’ll help him with his homework and give him tips and tricks.

Other activities: Bilal is still doing piano lessons, with a recital twice a year, he’s on his 3rd piano book now and is doing well, we went through a period where he refused to practice and a lot of crying, screaming drama but a bit after the SLP his attitude improved and his behavior during class is a bit more serious as well. Other than that, he has a science and technology after school class once a week, concentrating on how science sometimes appears as if its magic (getting an egg through a bottle) and then later on basic programming and robotics involving Lego. He also goes to Sunday school every week learning about Islam doing really well there and little by little trying to teach him some basic Arabic words, proper pronunciation is very difficult for him but he understands us well.

Overall like all his teachers and therapists keep saying Bilal is a happy typical little boy, loves computer games, Lego Mixels and just being silly and funny.

* The image that appears in the above Magic Eye is that of penguins.

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Interactive Metronome

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Definition: a device used by musicians that marks time at a selected rate by giving a regular tick.

So basically its a device that helps musicians keep a steady beat or rhythm while playing. So what’s an interactive one and how does that help my child? That was the same question I had when I was first told that Bilal would benefit from it. His physical therapist suggested it and gave me a brochure and website to check out, I did and still didn’t see the need of it, Bilal being musically talented already had perfect rhythm I even asked his piano teacher and they practiced some “rhythm cards” and did perfectly, so why does his therapist want to do this? just a waste of time and money in my opinion. I went back and told her what I thought and she said okay, we’ll just continue doing PT then, a couple weeks later she left CTW to continue her studies and that was the end of that. A few months later during Bilal’s annual OT re-evaluation, his therapist also suggested that Bilal would benefit from IM, so I brought up my concerns again and this time I got an explanation that would help and that made me convinced it would be a great therapy for Bilal. Yes Bilal may have perfect musical rhythm, but that is controlled in one area of the brain, while physical or motion rhythm is controlled in another area, and for Bilal a weak one. Take for example, dribbling a basketball, your hand, wrist and arm are moving at a certain speed and rhythm with the ball bouncing against the ground, if you go too fast, you would either miss the ball or change the bounce speed, if you went too slow, you’d most probably miss the ball altogether. You need rhythm, most individuals would have a short trial and error period and then they’re dribbling a ball, but for Bilal and other individuals with hand/eye coordination, motor planning or gross motor issues will not easily find the rhythm to dribble a ball, they need to be taught or trained and that’s where the IM program comes in. There is a home based computer program and there’s the in office program. We did the in-office one, the most basic program is to clap your hands in a steady beat (either fast or slow) as you hear a beep in the headphones. That’s the most basic, over the course of the summer, 3 times a week (from Memorial Day till the second week of August) he went and did an IM program. Started off with just the clapping at different speeds but then it got truly interactive and beneficial, there was clapping the hands at different positions, above head or hands low, toe tapping, heel tapping, alternating foot, hand to knee, step back (lunges), leg lifts from a sitting position, sit-ups, etc. He went through every body movement and position, learning to move at a steady rhythm at fast and slow speeds. It improves the physical aspect of his body, and improves, focus and attention and allows him to move, and play games along with his peers, he can jump better, helps with games like hopscotch or jump-rope, and ball games. His therapists have seen improvements in OT and PT after having completed the IM summer program. The in-office program was covered by insurance and we went in 3 times a week for an hour instead of regular OT. The whole therapy is recorded through a program with charts, tables and percentages, with each visit you can see the gains.

Example:

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The numbers all didn’t make sense to me right away but his OT explained them, in the graph, the objective was the to have both lines as close to each other as possible, showing that he kept the beat he was hearing with the motion required. Really interesting and really beneficial. I would highly recommend it.

Vision Therapy

It appears that all of Bilal’s fine motor muscles skills are affected by his autism or by his under-development in the womb. At age 3 we learned that he had fine motor issues in his hands and was unable to do anything precise or even hold a crayon or children’s scissors correctly. Alhamdullah that has been remedied by two years of occupational therapy. At age 4 we realized that one of the reasons his speech was affected and also his eating habits was due to weak tongue and mouth muscles, he’s been doing myofunctional therapy for a little over a year now and has somewhat improved. This year at age 5 we’ve come to notice that he’s having trouble seeing properly, we go through a couple evaluations and his eye muscles are weak which means he needs vision therapy to strengthen them. He has 20/20 vision but his eyes arent working together, they tire and lose focus quickly and tend to wander outwards. We always noticed that his right eye may wander sometimes especially when he was tired, but the eye doctor we were seeing said that as long as it didnt get worse we’ll just monitor it. Lately though his OT and PT therapists noticed he was having trouble staying on task and that he was tilting his head to the side to perform certain tasks which they suspected was due to a convergence/divergence issue. Also his dad noticed that he was afraid of heights or didn’t enjoy the rock climbing classes because he had trouble seeing what was expected of him. We first visit Dr. Free at the eye center at our local Costco. She performed all the typical eye exam tests but the bit extra was having him do some eye tracking computer game. She concluded that he does in fact require therapy and she suggested a Dr. Cook in the Marietta area or Dr. Iyer in Roswell. So I forwarded the report to Dr. Iyer and set up an appointment. We went in this week and she performed similar tests and some things that were new to us. She got his left eye to wander, the first time I’ve seen it and when it does wander he sees double. She said this was actually better than just one eye cause if it was just one that one would be very weak and require a lot of therapy but when he switches them maybe for distance or closeness that means they are both equally weak and wont require as much therapy. He also has binocular issues which mean his eyes don’t team together, they work separately so that would affect his reading and copying something off a board, also may impact sports. So right now she’s recommended 36 weeks of once a week therapy with an at home program to further practice the skills learnt at the office.

The medical terms for Bilal’s condition are as follows:

  • Oculomotor Dysfunction in Pursuits and Saccades (affects the ability to see where a word is on a page, and go from one word to the next)
  • Accommodative Infacility (This will cause blurred vision when reading, his eyes to fatigue when reading, headaches while reading, and make it difficult to change focus when looking in the distance (i.e., the board at school) after reading (or doing desk-work).)
  • Alternating Exotropia (wandering outward eyes)
  • Binocular Dysfunction (Bilal’s eyes have difficulty working as a team. Either eye has a tendency to drift out when looking at something in the distance. This will cause double vision, especially when looking at smaller objects. These conditions will also make it more difficult when Bilal is learning to read, since the words may look double to him.
  • Convergence Insufficiency

I always feel like we should have done this sooner always being told early intervention is key to improvement of symptoms, getting therapy at 3 is better than at 4 and 4 better than at 5 etc… That constant feeling of mommy guilt. But alhamdullah getting treatment now at this age is just perfect, right before the start of Kindergarten and right before he actually starts learning to read and real academic learning or serious sport playing.

When school starts I need to make sure this is included in his IEP. It’s stated that his right eye wanders when tired but that was it, just a small note. These were some of the doctor’s classroom suggestions for Bilal’s vision issues.

Recommendation for classroom:

  1. Reduce conflicting peripheral stimuli. Removing materials unrelated to the task will increase attention.
  2. Encourage your student to use his finger to follow the line of print when reading, if necessary. (A marker assists, but directs tactile finger contact with movement will offer greater support.)
  3. Printed material should be copied to larger size to reduce visual stress and fatigue
  4. Reduce the number of items on a page to reduce visual overload.
  5. Short visual work periods will tend to reduce visual stress and fatigue and the resultant difficulty with attention.
  6. Promote a reading and writing distance equal to the length of your student’s arm from elbow to middle knuckle (Harmon distance).
  7. This child has extreme difficulty with visual-motor tasks, such as handwriting. Please keep this in mind for all activities that involve eye-hand coordination

These recommendations may no longer be necessary once the program of optometric vision therapy is complete.

And finally here is some suggested reading or websites that the doctor recommended so we could better understand his diagnosis.

Suggested Reading:

  1.  Fixing My Gaze by Susan R. Barry.  2009
  2. Moro Reflex: A teachers window into a child’s mind. By Sally Goddard
  3.  College of Optometrists in Vision Development www.covd.org
  4. Optometric Extension Program Foundation www.oepf.org
  5. Vision Care and Therapy Center www.learningisvisual.com

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 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.

Horse Riding

Back in Janurary I wrote this about Equine Therapy at the time I didnt know that there was a difference between hippotherapy and something called theraputic riding.

Hippo-therapy or equine therapy is done by a certified physical therapist and they carry out physical therapy but the horse is an aid for skill learning and they carry out all their goals but atop the horse. They sit backwards or sideways for balance training, they stick their arms out, they lean forward, sideways or backwards to grab items etc.

Therapeutic Riding is riding a horse as best as an individual can with their disability, they learn riding safety, compassion towards the horse and they create a bond with the horse and the whole experience helps calm a child on the spectrum. The teacher isnt a certified therapist just someone with knowledge and experience both with horses and special needs. Theraputic riding is more widespread and common.

Both are beneficial to a child on the spectrum but hippotherapy is more intense, and because of the presense of a certified therapist it is almost always covered by insurance.

Bilal was doing theraputic riding as Lynn Bretcht isnt a certified therapist I asked her about the difference between the two, she explained it to me and said that even though she isnt certified she was still carrying out the same goals as in hippotherapy, her son Dustin has Downs and was in therapy growing up, he did/does Speech, OT, and PT and she used to observe his sessions and took ideas to use with horse back riding. So technically Bilal was doing theraputic riding but it was more like hippotherapy.

Children’s Therapy Works (CTW) the center where Bilal takes his OT and PT trained their physical therapists in hippotherapy and riding, and in April started giving sessions at a farm. Worried that Bilal would have a repitition of services between CTW and Bretcht Stables I told Lynn that she could teach Bilal basic horse back riding skills and no longer offer him therapy as he will be getting that with CTW, she agreed and we got him riding boots and he’s learning to “post” and steer, he may learn a bit slower but as she had 3 months with him in therapy she knows him well and can adapt his learning to fit him.

The only difference between what he was learning and what he’s now doing is in hippo is that instead of sitting in a saddle with stir-ups he’s just sitting on a saddle blanket, its much harder and this teaches him balance and really strengthens the hip/waist and core muscles. I think doing both hippo and horse back riding lessons has greatly strengthened Bilal’s core and posture and maybe one day he can be a rider maybe compete in special Olympics or other competitions.

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.

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