Our journey through autism

Kindergarten

Today marks the end of the first two weeks of Kindergarten. His teacher says he’s doing well and trying really hard and he seems to really enjoy it. His teacher has years of experience teaching grades 1-3 this is her first time teaching Kindergarten but I liked what she said during curriculum night. She knows what is required for a successful first grader so she will make sure when the year ends they are ready for that. She told me she has special education training so it seems a great fit for Bilal to be in her class. She has created a website that she updates regularly and she is always sending out emails with news and requests. In the middle of the first week Bilal suffered a stomach upset, says he wants to throw up we said it could be motion sickness from eye exhaustion or the beginning of a cold. She said she’ll let him rest a bit and if he’s not any better we should pick him up, he was soon fine and spent the rest of the day at school. That evening she called and checked on how he was and updated me on his progress, she said he was doing really well and trying really hard, that he has trouble staying seated but that she doesn’t mind herself. She said writing is the most difficult for him but that OT and his special instruction should help with that. I really fell in love with her then, and really looking forward to the rest of the year working with her with helping Bilal. I’m trying out some volunteer positions in his class keep me better updated with his progress and what he’s learning. I volunteered to be a mystery reader, show up without the class knowing who it is and read them a story, wasn’t really interested at first but when I saw another mother with a heavy accent volunteer I thought why not. I volunteered for the Scarecrow Festival but we’ve yet to do anything.

Bilal at first only talked about the difference between pre-k and kindergarten about the bigger class, about recess, PE, the cafeteria, the school bus. He particularly enjoys waiting at the bus stop and getting on with the other kids and walking the bit from the stop till the house. He made friends with a first grader on his bus who is most probably only a couple months older than Bilal. He’s mentioned a few games he’s played during PE or recess. So far it looks like attending a typical class is the best fit for him inshaAllah. We should have an IEP meeting soon to update goals and include his vision problems, looking forward to a great year.

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Summer 2013

I’ve been meaning to write for the longest time, but busy with one thing or another, so now I have to back track… school started last week and I wanna write up about that as well, but first let me sum up our summer and then write up about school and therapy and anything else.

Summer was kinda busy, at the beginning of the summer he had his piano recital, horse show, and 2 summer camps. I’ve already written about all those except his second camp, the YMCA summer day camp.

We did 1 month of Y camp and 2 weeks of swimming, and he had a lot of fun, he doesn’t say much about his day but he was happy to go every morning and was happy when I picked him up, it was from 8:45 to 4 every week day and it helped him sleep easily at night. He started the day with swim lessons which I think have helped him be more confident in the water and a better swimmer. There was arts and crafts, sports, nature and because of a lot of bad rainy days there were also indoor activities and movies. Hoping to do it again next year but maybe add an extra session or 2 to fill up his summer, he gets bored and restless during the long days. One day in the car after camp he asked me if he could be a camp counselor when he grew up so I take it that he had fun even if he didn’t tell me about his days and why he was having fun. He got really tan and also got several bug bites that he scratched at incessantly, the was the downside, and I couldn’t spray him something before he went in the morning because he started the day with swimming and it would have been washed off.

After 4 weeks of camp we did 2 weeks of swimming. It was 4 times a week every morning so he got the most benefit, also the instructor he had was better than the previous one. He was the oldest and most advanced in his class, I could see the improvement in his confidence and swimming abilities, he kept his head under water longer, and was able to swim a little on his front and on float on his back. At the end of the 2 week session the instructor filled out the report in detail and not just quickly marking off the form. She suggested he repeat Pike 2 because he was unable to swim the required distance but other than that he was ready for the next class. Not sure yet when we should restart classes or move on to something else.

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

Dentist Visits

Dental visits can be very tough for a child with autism. The sensory overload, too much touching, noise, instruments, lights, possible pain. Even typical children and adults have a tough time at the dentist. Thankfully Bilal’s experiences have been good so far. When he was a baby or toddler, I never brushed his teeth, as a baby he had a toothbrush he would sometimes chew on and then as a toddler he liked to copy me and brush his teeth and I was fine with that, with doctor visits so difficult I didn’t see the point of visiting a dentist with his no issues or complaints with his teeth. As we were applying for pre-k it was required to get a dentist form, so I asked his pediatrician for a referral and we went to the first name on her list. Bilal absolutely refused to put the x-ray film into his mouth and the screaming and tense body reactions started so the dentist said it was fine for now due to his age (3 and a half) the check up, cleaning and fluoride was another struggle with the dentist holding him down. On the form I was honest and marked that we didn’t brush every day so when the dentist saw that he went on to give me a long lecture about how horrible and irresponsible that was of me and how important teeth health was and that it was essential that I brush his teeth for 3 minutes twice a day and floss daily and on and on he went. I thought by telling him my son has autism and sensory issues it would shut him up some. Surprise surprise he said that his son has autism too and he wraps him up in a blanket burrito style, puts him on the floor, puts his legs over him and tilts his head and brushes his teeth, every night its a struggle but its for his son’s own good. I was shocked he was telling me practically to tie down my son and force brush his teeth, how will he ever accept to brush his teeth without a fight and how will he ever enjoy it. At the end of the visit he gave Bilal the bag with the toothbrush, toothpaste and from the treasure box he gave him a little sand timer so he can (or I can) make sure to brush for the 3 minutes. He also snapped a Polaroid picture of him and Bilal together saying it would help Bilal recognize him and the office and it would help with our follow up visits. That picture ended up in the garbage. I thanked him and got the form, went home and cancelled the 6 month follow up visit that the receptionist had set and decided never to go see him again.   Our dental routine was the same after that, he had a toothbrush that he would use occasionally by himself no complaints or battles. A couple years later I really don’t remember what it was that made me decide to pay attention to dental health, his younger brother had fallen a couple of times and bumped his teeth so I called their pediatrician again and asked for another dentist and we went there, the clinic was set up with a large waiting area and a lot of play areas for the kids, all the decor was colorful and child appealing. I felt more comfortable there and the boys did too. The check-up went more smoothly, we got the x-rays done and I didn’t get a lecture only a quick piece of advice. At home I brushed their teeth every night in the bath, it was quick and easy and they had no complaints, it was a part of the bath routine. We went back again for the 6 month follow up and it went even better as the older Bilal gets the more mature and less sensory issues he faces. A cavity was found and he was only given laughing gas, no sedation, no restraints, he did a really good job and the nurses were very friendly and explained everything to him and answered all his questions and they explained the need to floss and he was okay with it after that, so now the flossing has been added to the bath routine with no complaints. At this clinic they get the little bag with the toothbrush and toothpaste but attached to that bag is a helium balloon that they love, and if they had more than a check-up and cleaning they get a little fun toy (not a timer)

 

teeth

This was when Bilal was 2, I heard him in the bathroom so I go check on him and find that he had climbed into the sink to play with our toothbrushes.

teeth 2

I give him his own brush and snap this shot. He doesn’t enjoy it much.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So in conclusion yes dental health is important but I believe that it can be taken in a slower pace and also very important is choosing the best dentist and practice, someone who can understand your child’s sensory needs and is patient and friendly enough to have the child enjoy the visit. You’d think a parent of a child with autism would be more understanding but surprisingly it wasn’t for us.

Camp Moementum 2013

Bilal had a great time this year at camp Moementum. It ran for 2 weeks, and he missed only two days, one due to fever and another due to a dentist appointment that wouldn’t have been easy to reschedule as it was set 7 months ago. They did a lot of the same activities as last year, sports, hikes, water guns, splash pads, and arts and crafts. He got a couple t-shirts and a photo video DVD. Last year the camp ran from 9-12 also but she had after camp hours as well for an extra fee, this year everyone left precisely at 12, and it was a little low key, last year Siemens came for a science expo and representatives from the Atlanta Braves baseball team came as well. This year there wasn’t anything special like  that. Bilal still had a blast, the second week there were two boys (brothers) close to his age and they quickly took to each other and the teachers called them the Three Musketeers, he talked about them a lot and they looked really cute together in the pics.

This week he’s off, no camp but he has his weekly therapy sessions (minus speech) then next week he starts 2 sessions of YMCA camp creek camp. Its a full day camp with a large number of kids, counselors and activities, it sure looks like fun and I hope he enjoys it as well.

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.

Horse Show

Last week Bilal had his final horse show, it was planned to be at Banks County Horse Association but they had to cancel due to the rain. So Lynn the owner and instructor at Brecht Stables and Dustin’s Place looked around till she found that the Rolling Hills Saddle Club at the Wills Park Equestrian Area in Alpharetta had a show taking place as well. For us this was great, its like in our own backyard. Its more formal and a tad more expensive that Banks County but we enjoyed it more, its faster paced they have several arenas so there wasn’t much wait time and their speaker system was a bit louder too.

Bilal has been taking horseback riding since Jan. 2012 first as therapeutic riding, then as western riding. When his therapy center started doing hippo-therapy he was considered  the most advanced rider. He’s learnt a lot and I’m sure developed physically as well. Last Fall he participated in three classes at the Banks County Horse Association and won three ribbons, 6th, 5th and 1st place. We’ve taken the 25 mile drive once a week up to Cumming for lessons, in all kinds of weather. It has been a lot of fun. Sulayman started therapeutic riding when he turned 2 and quickly picked up some skills, and he had a blast playing with Lynn’s two year old Timothy and his sandbox and toys. Sadly though we decided that a year and a half of riding was enough, and it was time to move on to something else. He requires less therapy now and needs to work more on social skills, so we’re thinking of a team sport like soccer or anything else he may like, he’s still young and needs to explore other options. We’ll greatly miss Lynn and her boys, the horses and the ranch. I wish her all the best with her program and we’ll stay in touch and meet again soon.

IMG_0798

Bilal’s Horse Show Ribbon

IMG_0799

Sulayman’s Medal

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