Our journey through autism

Posts tagged ‘IEP’

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.

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.

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

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!

 

IEP Transitional Placement Meeting

Last week we had Bilal’s IEP transitional meeting for kindergarten placement. We also went over his goals and updated goals required for the remaining of the school year and the beginning of the next school year till his 6th birthday. It all went really smoothly and alhamdullah I’m glad by the attention and dedication his team have for Bilal’s continued progress. Ms. Norton the special ed instructor from Manning Oaks was invited to attend and she continued to take down a lot of notes and better explain the system at her school. It was agreed that he attend typical kindergarten with speech, OT and 2.5 periods a day of special instruction mainly for writing and any other instruction he would need. His OT has been reduced from an hour a week to half an hour a week. He’s got scissor cutting and pencil grip learnt but just needs to improve his arm alignment while holding the pencil to press harder and be able to actually write instead of draw his letters, smaller and neater writing. His only remaining special goals are the use of a “fidget toy” something to keep his fingers occupied so he can pay attention better, and a little one-on-one talk with a teacher to learn that he doesn’t need to be a perfectionist and speed his work. His speech goals are mainly to improve articulation and grammar structure and be able to use more adjectives.

We did it! 2 years of special education and therapy have prepared him to attend a typical kindergarten with typical peers, he’ll have a normal day at school with reading, writing, math, science, social studies, art, music and PE. He’ll ride the typical bus to and from school. He’ll move from a class of 9 students (7 boys, 2 girls) to a class of a maximum of 22 students with a more equal mix of boys and girls

Towards the end of the month local schools have Kindergarten Tours, where parents and little kids can tour the school, have a snack at the cafeteria and take a ride in a school bus, parents take home the registration package and have any questions answered. Then the week before school starts (August) they have orientation again to tour or ask questions and by then their homeroom classes and buses would have been assigned and we’d get our school supply lists. I’m super excited and optimistic that Bilal will do just fine and hopefully make a friend or two inshaAllah.

Kindergarten Observations

This month we’re busy with figuring out the best kindergarten placement for Bilal and later in the month we’ll have our transitional IEP meeting. So last week his teacher told me to contact the special ed instructor (Ms. Nateli) to tour the special ed kindergarten at Alpharetta Elementary. I went and saw the class and and had a chat with her. The class was set up exactly like his current Pre-K class and there were only 5 boys in the class (no girls) this year, they appeared to be high functioning but who knows who will be in the class next year. I felt it would be a repetition of the last two years for Bilal and not really beneficial, I feel its time for him to be included into the real world and deal and interact with typical peers and learn early on what the world is like. So she told me to contact the special ed instructor at his home school (Manning Oaks) to observe a typical kindergarten class and see the resource room and better understand Bilal’s other options. So a week later I go and meet her (Ms. Norton) and she takes me to the resource room, this is a small classroom where students who are having trouble with a certain subject can get pulled out and get more one on one instruction, the class usually doesn’t get any bigger than 6 students. It happened to be a math class, an area where Bilal will not need special instruction, but I understood the system. The teacher was explaining the word problem slowly and step by step, they solved it using different visual aids, drawings on the board, finger counting, block counting. The students get sticker rewards for good behavior and when they acquire a total of 25 stickers they get a prize from the treasure box. The whole time she kept taking notes on Bilal and asking how Bilal would cope with certain situations and explaining what a typical week was like. Then we went into the typical class. It’s set up very like his current Pre-K class but larger and with several tables (desks), they were also working on math word problems, but it was on the board and they were using terms like signs, equations, and solutions, they didn’t use much visual assistance. They move around a lot from group work on the floor to sitting in their chairs and writing the problem in their notebooks, to centers for play learning and then switching around again. Ms. Norton was very helpful explaining everything and taking down notes. She will be invited to attend the IEP meeting and give her opinion about Bilal’s placement as well.

From what I saw I feel Bilal would do fine in the typical class and he can be pulled out to the resource room to work on handwriting skills, and he’ll also be pulled out for his Speech and OT  sessions.  I’m nervous but ready for this IEP meeting to be over with.

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.

Tag Cloud