Our journey through autism

Archive for June, 2013

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)

 

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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.

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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.

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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.

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Bilal’s Horse Show Ribbon

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Sulayman’s Medal

Piano Recital

Last weekend was Bilal’s first piano recital. He did amazing and he looked really handsome and grown up in his shirt and slacks. He’s been playing piano since July of last year with Ms. Megan of MTSofGA and he’s picking it up really well. They’ve been practicing and working on his songs for a month and he played 2 songs with finger together placement. His playing brought tears to our eyes, we couldn’t be prouder.

I’ve said this before and its also been said by the mother of the autistic teenager that may receive a noble prize for his work in astro-physics. That you have to find the child’s “spark” find what he’s good at, something he has a passion for and concentrate on that along of course with all the other therapy. Try to turn his passion into therapy that will help the child in his other areas of weakness. As the child gets older therapy becomes work and boring its no longer a play date with an adult so doing something fun is important. Bilal has a musical ear and can carry a tune on key and all that so we looked for music therapy, he does tend to get silly and off track a lot but his teacher has been amazing and great with him. Playing the piano has been good fine motor practice with moving his fingers along the keys his sessions at OT improved as well. So my two cents of advice is to find that passion or spark and work on it, be it music, art, math, design, science, computers… etc. It may turn into the child’s career path or just something that gives him a confidence boost and helps along with life.

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Bilal was the first one playing. Also his trophy.

Boredom

Its the summer a long vacation with long days, a lot of time to fill up and keep a child occupied, a child that doesn’t know how to fill his time on his own, used to having structure and told what to do. Bilal gets bored quickly and easily. He wakes up and asks to play on the XBox, he plays for a few minutes and then turns it off and turns on the laptop to watch a couple episodes of Power Rangers, he then shuts it and starts pacing around the house, he then asks for the XBox again and so on and so forth. He might play or fight with his little brother we’ll go attend one of his therapies etc but that’s pretty much it. He’s not into arts and crafts or books, so it isn’t easy for me to figure out something for him to do to keep occupied, the weather is hot and indoor activities are usually costly. Summer camps are essential for him and just trying to change it up. A board game or legos, or cards, play doh, a day at the grandparents, a shopping trip etc. I used to get bored easily when I was a teenager and would state quite often “I’m bored!” my mom says I take after my uncle, but we both didn’t pace around the house, I tried to keep occupied by watching TV or reading books but Bilal doesnt keep to anything long enough. He still doesnt use the phase “I’m bored” but his actions say it all.

I’ve seen that a couple people used the search term “summer regression” when visiting my blog, thankfully Bilal doesnt regress during the summer, whatever skills he’s learnt over the year he retains, we also keep up with his weekly therapies so skills are kept intact, its the boredom and behavior issues that arise during the summer or vacations longer than 3 days. He may ignore rules, or fight with his brother more, more frustrated and angry, all something to amuse himself with when he’s bored.

We’ve started summer camp this week, even though its only 3 hours in the morning its something that tires him out and fills a small void in the day. In 2 weeks he starts the YMCA camp which is 7 hours long which I think will be perfect in keeping him occupied and worn out.

Yesterday he had a fever and complained of leg pain, I’m guessing a bad case of growing pains, but he was able to take a 4 hour nap during the day, something he hasnt done since he was a baby. He woke up refreshed, happy, well behaved and really chatty. It was really a recharge boost. His body really needs the naps and the rest I wish he could do it more often, it doesnt have to be a daily thing but every now and then, I believe its good for him. He sleeps about 9 hours or less at night, never naps not even in the car, he only naps when he has a fever and usually just for a little while the 4 hours thing was amazing.

 

Hope ya’ll are having a great fun filled summer.

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