Our journey through autism

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.

Sensory Learning Program

Sensory Learning Program is another part of Bilal’s intensive summer therapies. SLP is really quite complicated to explain and sometimes seems like I’m talking science fiction, and whether it works and makes a difference is difficult to tell. I’ll try my best to explain it:

To learn anything new you acquire information mainly through, sight (vision), sound (auditory) and motion (vestibular) of course there are the other senses that you gain information from, but from a sensory point of view those are the 3 systems. The 3 systems have to be in sync, working together at the same time and the same intensity to truly learn. If one of them is weaker you miss important information, and if one of them is too strong you focus more on that information instead of gaining a complete picture. SLP aims to reset the 3 systems and train them to work together at the same strength, and it does this by using lights, sounds and motion, with the use of a sensory table.

Before therapy begins, the individual is given a brain scan to draw a map of brain electrical pulses. Print outs of reds, greens and blue, showing which areas of the brain are the most active and which are the least active. Talk about alpha, beta, delta waves, etc. The technician who ran the test is what you could only call a brain geek, she was fascinated with the results and went on and on talking about all the different waves and strengths, it was way above my head. Something I picked up was the reason for Bilal’s constant movement (vestibular) he has to constantly stay in motion (fidgeting, walking around) to awaken his brain to think and learn, if he pauses his brain falls asleep. This is what happens with ADHD. From those results they were able to understand how Bilal’s brain worked and could come up with a plan for treatment. They would choose certain light and sound frequencies to expose Bilal to that would activate the weak spots on his brain. Another test they run before treatment, is a “listening profile” they have Bilal listen to certain beeps or sounds at different frequencies to again determine his weaknesses and strengths and expose him to the right sounds during treatment. In short this therapy is like resetting the brain where its all balanced and able to use information efficiently and improve learning.

Therapy is divided into 2 parts, in office and at home. The in office part lasts for 18 days. For 18 days Bilal had to go to the clinic, half an hour in the morning and half an hour in the late afternoon to lay on the sensory table, look at a light and listen to sounds through headphones. The table is like a big bed that slowly turns, up and around downwards and up again, very slowly to trigger the vestibular system. There is a light box above his head that displays different colors (ruby-red, magenta, yellow-green, green-blue, etc) each color has a different frequency that activates his visual system. Finally he listens to different sounds played at different frequencies through large over ear headphones, to strengthen his auditory system.Each person reacts differently to this therapy depending on their starting point, but in general each color or frequency triggers a certain emotion or part of the brain. Examples:

  • the color magenta which helps regulate emotional senses and relaxes the visual system
  • the red and ruby color which stimulate the cerebellum which is responsible for the integration of auditory and movement information. This color also addresses visual processing, promoting convergence and eye teaming to look at a single object
  • the color yellow-green which address motor planning and expressive verbal communication

Some of them are almost instantly, the day of the yellow-green exposure Bilal was telling stories, re-telling a cartoon episode he saw in detail. Other times emotions would show up by the end of the day. It’s really interesting to say the least.

In the middle of the 18 days, another “listening profile” is done to see improvements and to determine other frequencies to play for the second week.

The second part of the therapy like I said is an at home program. For 12 days (total of 30) twice a day, 20 minutes in the morning and 20 before bed, Bilal goes sits in a darkened room or closet and looks at a light box that emits a steady phasing in and out magenta light. This part of the therapy had less side effects or emotional outbursts.

Like I said this therapy is like a reset of the brain, some children its like a switch was turned on and improvements are instant, but for the majority improvements happen over time, small changes with behavior, attitude, learning over several months. It takes time for the brain to re-wire and organize itself to learn more efficiently with past information and with new information.

Before we did this therapy I chatted with someone on a forum and she said she didn’t see any improvements with her son, but still felt it worthwhile, this therapy was not covered by insurance, a $3000 out of pocket expense, also the time required for twice daily clinic visits and twice daily quite time at home is exhausting for both you and your child. Did we benefit? Its hard to say for sure, at the same time he was doing IM, that had a benefit, did the SLP help with it? don’t know… He has had improvements with attitude, anger or frustration is diffused faster, he’s a little calmer, bed wetting is no longer every single night, its every 4 or 5 nights now. Next month we’re due for a post-SLP brain scan, to see any differences or improvements. I would say it was worth it, we don’t regret it, and you should look into it too.

http://www.sensorylearning.com/program.php

https://www.youtube.com/results?search_query=sensory+learning+program

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.

Welcome Back

Hello everyone,

Welcome back, I’ve left the world of blogging and just got busy with life and raising 2 little boys and all that entails. So what have we been up to, I could say nothing really, doing the same as any other parent of young boys would be busy with, school, after school activities, sports, family outings, etc…  or I can concentrate on all the different therapies we’ve done and those have been interesting.

Where have I left off? That we’ve just started Kindergarten and things were looking great… now we’ve started 1st grade almost 2 months ago and alhamdullah its been going really well. Bilal did really well in an integrated classroom last year with typical peers. He still had an IEP that covered speech goals, OT goals and language arts special needs. He had trouble writing and was pulled out of class for an hour to get help with writing assignments. He learned to read mashaAllah and within class he was in the top reading and math group. He had friends in class and on the bus. Just overall a great first year of official school. By the end of the year he was discharged from school based speech therapy and promoted to first grade along with his peers with the remainder of his IEP goals.

During the summer we were busy with 2 different intensive therapies so we weren’t able to join any summer camps except for a 3 week pre-Ramadan Islamic camp. In the coming weeks I will dedicate a blog post to each of those therapies. Interactive Metronome (IM) and the Sensory Learning Program (SLP). InshaAllah I will try to keep the blog up-to-date and current as the original purpose of the blog was to help others taking the same journey and help them learn from our experiences and learn about the different therapies available for their children.

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.

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