Our journey through autism

Archive for the ‘evaluation’ Category

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.

Magic-eyes-magic-eye-16383884-2551-1681

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

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

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.

Pre-K over

It’s summer! School ended on the 23rd of May, and all in all its been a good year, on the 20th they had their end of year party and all his teachers had good things to say about Bilal. One of the assistants said that he is a know-it-all, answers every question and the day he’s absent they get no answers and they feel his absence. His speech therapist says he’s doing really well and that she would have discharged him if it weren’t for changing schools, structure, and a whole other environment that might cause issues or regressions. She said his IEP is due 2 months within the new year so his new teachers can take it from there and next year he is also due for a re-evaluation by the school system, so then we’ll see. His progress report shows that he is making progress or has mastered all his IEP goals, those that are still in progress are at 65% and up.

This is an email that his teacher sent us:

Dear Parents,

Our last book unit for the year was called “A House for Hermit Crab,” by Eric Carle. I never realized how appropriate that book is for the end of the year. It is about a crab that finds a new shell home and decides to decorate it with many different forms of sea life over the course of a year. At the end of the year, the crab has found that it has grown out of his special shell and needs to embark on a journey to find a new one. When I reflect on the story I think of the children as the hermit crab that has come to a new shell home (PSE). It was scary at first but they grew into it. As the year has passed each child has added new decorations (milestones, friendships, and achievements) to their shell home. Now it is the end of the school year with many of the students finding their shell again too small and they have to shed the Preschool shell and embark on their journey to find a new shell and add new decorations to it throughout their school career. I know that some of the children will not remember my name but I hope they will always remember the lessons that they have learned, the self confidence that they have developed, and the love that surrounded them here.

I want to thank each and every one of you for allowing me to get to know, work with, and serve your children this year. The lessons that they have taught me are beyond measure and I will never forget their names. It has been an honor, a privilege, and a pleasure.

It’s so sweet and brought tears to my eyes, their dedication and hard work makes a lot of difference in these children’s lives and they usually go under appreciated and taken for granted I pray that his teachers are always this passionate.

 

Well first week of summer we have nothing planned, his weekly therapies are continuing and just relaxing and having fun. Second week he has his music recital and final horse show, and also he starts summer camp, busy, busy, busy, fun, fun, fun!

 

Have a great summer ya’ll!

 

Progress Acheived

Cant even think about this or write about this without thanking God for answering our prayers because none of this would have been possible without His Glory and without the prayers, love and thoughts of our family and friends.

Yesterday was Bilal’s 9 month follow up appointment at his developmental pediatrician. She sees him every 9 months and runs some tests, language, IQ, observation kind of questions which tells us his developmental level compared to typical peers.

In  August 2011, he was 3 years and 10 months (almost 4) but he scored the developmental level of a 2 year old. An almost 2 year gap between him and his peers. This is when she gave him the diagnosis of mild autism.

9 months later in May 2012 he was 4 years 8 months old and he scored at the developmental level of 4 years 1 month, a gap of only 7 months. From 2 years to 7 months. 9 months of school and private therapy. She was amazed and told me to just continue what we’re doing and she was optimistic but more surprised really.

Another 9 months later in February 2013 (at the age of 5 years, 5 months) he scored above average (6 years, Kindergarten level) in math, average in receptive language and on the lower end of average for writing skills. In just 18 months of school and therapies he has caught up with his peers developmentally and surpassed them in math. I couldn’t be happier, I’m so proud of him, I cant help the tears of happiness every time I think about it. The doctor was really impressed and excited about his future. I could see the progress and know he’s been doing amazingly with his therapists considering discharge in the near future but to be told his scores is a whole different level of happiness. Alhamdullilah! So he’s caught up with his peers intellectually, academically and developmentally, but we still have more to this journey, we’ve overcome our biggest hurdles, but the tests don’t show how he fits socially, his confidence, it doesn’t show how peers will treat him, and it sure doesn’t show us his future. This month I’m busy with kindergarten observations, phone calls and discussions with teachers and therapists to figure out the best placement for him next year. The developmental pediatrician agrees with me that both class settings of typical kindergarten or special ed class have benefits and risks and its really all up in the air, she would like a mix of both which isn’t possible but we could provide him with lots of resources and assistance if needed.  She wants to see him again in October after he’s started kindergarten and to see how he’s doing.

If someone would have told me or if I had stronger faith in God, back in August 2011 that in 2 years this is where we would be I wouldn’t have believed it, when you’re given a diagnosis you just feel devastated and negative, you do your best but that diagnosis like a black cloud is always on your mind you cant shake it off, and you keep having thoughts of this isn’t enough, you want more, you push and shove and I was really strict and stern with Bilal not allowing him to slack off and alhamdilluah we’ve been blessed, blessed with amazing grandparents from both sides that haven’t stopped praying for him, for friends and family, insurance, finances  dedicated therapists and teachers, and for our health and determination to keep going and not giving up.

I’ll be posting another post within the month detailing our kindergarten placement and IEP meeting results. and as always dont stop praying for Bilal and for continued progress in all aspects of his life inshaAllah.

Physical Therapy – Year 2

Last week was Bilal’s second annual physical therapy re-evaluation. I was looking forward to the re-evaluation and all of the re-evaluations for this year, his therapists are all saying what a good job he’s doing and how much progress he’s achieved and maybe looking at discharging him and so on. She said he did really well and has met all his goals except 2, those dealing with upper body strength and throwing/catching a ball. He’s achieved those goals relating to core strength, balance and coordination. He will no longer require hippo-therapy and will move all therapy to the gym, which I’ve always felt to be more beneficial to Bilal, on the horse I just feel he’s sitting there, yes I know he’s working his core and balance and all that but mainly he’s just sitting there, in the gym he’ll do a lot of target throwing and catching, and monkey bars and things to strengthen his upper body muscles. Because we’ve left the barn and moved to the gym we’re unable to find consistent weekly slots and finding available ones as they pop up or when someone cancels, so she sent us a home program where Bilal should try crawling in different ways, do the wheelbarrow, crab walk and etc, and boy do they really use your upper arms, as out of shape as I am those stung but he had a lot of fun and its good to do them with his younger brother as well.

 

Also this week I’ve joined the local YMCA, its mainly for me and getting fit and losing weight, but they offer so many things for the boys, rock wall climbing, swimming, gymnastics, karate, soccer, t-ball, flag football, basketball, volley ball, and little things as family movie night, parents day out, parents night out and all at really affordable prices. Looking forward to starting all that, have a wellness coach appointment on Tuesday and the fitness will begin for all of us God willing.

Tag Cloud