Our journey through autism

Save Dustin’s Place

This is my first campaign like post. Personally I don’t support or am passionate about much, especially something political. This though is autism or special needs related which I am passionate about.

My friend Lynn over at Brecht Stables and Dustin’s place is facing closing her doors if not enough money is raised to fix up her place to meet county zoning criteria.  Her full story and donation page can be found here.  Yes it is true that we quit horseback riding back in June, but that was only due to the distance and for Bilal moving on to discover new things. I have no complaints about Lynn’s program. She was amazing, she’s doing it all on her own with volunteers, she tries her best to accommodate with people’s schedules and the weather. She serves all children of all ages and with all capabilities or disabilities. Her son Dustin who is about 12 years old now was born with Down’s Syndrome and had several health issues when he was younger, he needed all types of PT, OT and Speech therapies, Lynn observed the therapists and took all that information to helping her son herself with the use of horses which she’s always loved and grew up with. It has helped his strength and progress amazingly that she decided to help other special needs children. I’ve seen children with Downs, autism, ADHD, Muscular Dystrophy and Blindness enjoying the horses and the program. She also teaches typical children Western Horseback Riding. She teaches all ages, she worked with Sulayman when he turned 2 and picked up a lot of little basics. Horses are amazing creatures and there’s something about riding them that calms children down and helps them progress.  She organizes and takes the children to the Georgia Special Olympics and other Horse Shows. She runs a summer camp, and she boards horses. Its a lot of work for a single mother of 2 boys but she manages and does great. I’d hate to see her close her doors and turn away all these children who can benefit so much from her programs.

 

Please try to help her, every little dollar helps her get closer to her goal of $11,000… she needs to plant trees as a privacy fence between her place and her neighbors so a donation from a grower, planter or gardener business would be great.  Please hurry and share her page with others and spread the word, because time is running out.

 

Bilal’s history with horseback riding can be found here:

Equine Therapy

Horse Riding

Horse Show

 

 

The Story of Ota (part 2)

Over time Ota didn’t just become a favorite toy. It was more like a sensory comfort. He always liked rubbing it or banging it against his cheek, he stroked its tail every time he took a bottle and clasped on tight to it while he slept. Deep in his sleep his hand would move around until he found Ota’s tail and clasp on it and settle back into sleep, he didn’t wake up or open his eyes, he did this in his sleep.

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Bilal holding Ota's tail while taking a bottle

Bilal holding Ota’s tail while taking a bottle

 

Because of my don’t go out with Ota rule, my mom bought a similar toy cat to be kept at their house so Bilal can play with it there and have it in case he naps or we stay over. That extra cat came along to the trip to the US when I was pregnant with baby brother. He had both cats by the tail on the plane with him and they came along for the our 12 hour car trip to Southern Florida to visit family.

Ota and Twin

Ota and Twin

 

Needless to say Ota has been through a lot, she’s been around longer than Bilal has, she’s been washed and dried countless times, she’s traveled continents. She’s an old little thing… the plastic glass eyes are scratched and chipped, her stuffing has long been unfluffed, her white fur has turned a shade of grey that doesn’t come out in the wash. A few months ago her back was ripped and I stitched it up. Last month her neck was torn and her head was held on by a small part. So I took to taking out all the unfluff, wash it, stuff it with new fluffy fluff, put in a few drops of lavender essential oil for calming effects,  and stitch it back up.

Un stuffed ota

Unstuffed ota

 

 

New fluffy fluff

New fluffy fluff

 

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Stuffed clean lavender scented Ota

Stuffed clean lavender scented Ota

 

Sweet Dreams!

Still sleeping with Ota

Still sleeping with Ota

The Story of Ota (part 1)

Ota is the Arabic (Egyptian) word for cat. It was the first word said by both my boys at around 12 months. Cats have been a large part of my life especially during my teens and early twenties. There was always a cat in the house during those years. At 13 my friend’s blue Persian got out the house and got pregnant by a stray tabby. She had 3 kittens and I took the runt of the litter she was a medium haired white and grey tabby. She was like my baby, I dotted on her, talked with her and she was really my everything then. We had her for 6 years and during those years whenever there was talk about giving her away due to my parents fear of Toxoplasmosis or being unable to find someone to care for her over the summer while we traveled until the last minute, I would go through the extremes of teenage drama, bawling and crying and being utterly depressed not wanting to lose her,  we always kept her.  Along with Tooti we always fed the strays in the area and several times they would come give birth in our balcony finding it safer and with a supply of food, so we had a lot of cute little kittens running around as well. In college I adopted two small kittens and took care of them as well. So oddly enough during my first trimester with Bilal I had constant dreams about kittens. I woke up feeling that I was pregnant with a kitten instead of the baby from all the dreams. The only thing I’ve ever babied or taken care of was cats, so either my subconscious was saying I would make a horrible mother and treat the baby like a kitten or that I would be a good mother because I already know how to take care of something small and dependent. Go figure.

During the pregnancy hubby and I decided to check out Toys R Us and see what products and toys were available what I would need and the cost of everything. I found a soft stuffed white and grey toy cat and said I’ll get this for baby, it looks like Tooti and baby should grow up loving cats too. So that’s the beginning of Ota’s story, she was bought even before Bilal was born and placed into the crib we bought for when baby came. When Bilal was born Ota was placed on the other side of the crib, it was always close by. I think about 12 months he fell in love with it and it became his toy, always making sure it was there when he slept and nearby during the day when he played.

Heart to Heart

Heart to Heart

In this photo Bilal was about 4 months old babbling with Ota in his crib.

Bed Time

Bed Time

This picture Bilal was about 11 or 12 months old and sleeping with his two favorite toys.

I only had one rule regarding Ota, he wasnt allowed to go out with it. I’ve seen parents battle with their kids over their toys when they went out and then when it was lost or forgotten the crying and tantrums that followed and trying to distract the child or having to find and buy a replacement. I just didnt want that, so when we went out we would say “Bye” to Ota and leave her by the front door and there she would be the first thing he saw when we got back home. Ota only left the house if we were going to spend the night away from home.

Traveling with Ota

Traveling with Ota

On a car trip from Cairo to Alexandra, Ota came along.

Because of Ota he fell in love with real cats. The streets of Egypt are full of stray cats and he always saw them, pointed them out shouted “Ota!” and if possible ran after them.

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Stray Kitten

Stray Kitten

Ota was always around and close by, played with all the time in dusty Egypt and with Bilal’s reflux and frequent vomiting Ota was usually a victim of yuckies and needed to be washed a lot. A damp soapy towel wouldn’t do of course when vomited on so she was put in the washer and dryer or placed in the sun. She soon lost her softness and fluffiness. Next part more pictures of Bilal and Ota and the continuation of their relationship till today.

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.

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.

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