Its that time of year again. School has less than 2 months and then a 3 month long summer break before Bilal starts Kindergarten in August. As we’re transitioning all his classes to a typical setting we considered the YMCA summer camp. It’s sports, outdoors, nature walks and they provide swimming also a great bonus is that its close and from 9-4 everyday, its a tad more expensive than we’d like but that’s the average price around here. They offer sessions all through the summer from the very first week till the week right before school starts and you can pick and choose which sessions to do. So we’ve got him booked for mid-June till mid-July for now. Last year he went to Camp Moementum for the month of June and he loved it, I thought about it but dismissed it because we want a more typical environment. So a couple of weeks ago there was a summer camp expo for children with special needs, the only reason I went was to say hi to his swim instructors and thank them again for everything so there we ran into Maureen the camp momentum instructor, she said she hadn’t heard from me and why haven’t I replied to her email I told her our circumstances and she said that her camp was a mix both special needs and typical children attended and Bilal would fit right in, she gave me the application and we thought it through and decided to do the 2 weeks, it being cheaper and something Bilal knows and remembers. More sports, hikes, splash pads, arts and crafts and the like. It could also be a bit of practice before he does the YMCA camp. He’ll still have his therapies, music lessons and recital, horse back riding lessons, and a boy scout camp with his dad for a weekend. We might also look into Arabic or Quran lessons, so it will be busy and hopefully no boredom or regressions. Even though I’m not looking forward to the heat of the summer cant wait for the fun of it all.
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.
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.
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.
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.
Walking around or pacing is considered an autistic trait or a form of stimming. Bilal started walking around when he was two and a half years old. It was a nightly ritual, every evening around the same time he would start pacing around the house back and forth and in circles with this very intense expression on his face, humming, sometimes smiling and totally immersed in a world of his own, he wouldn’t acknowledge us when we called him and if we stood in his way, without really looking at us he would walk around us and go on. When he started daycare at the age of 3, whenever the kids were given free time to pick whatever toy or activity they wanted to do and go do it without teacher instructions, Bilal would instead start pacing, he didn’t know how to play during free time, he had to have the teacher tell him what to do and he’d do it fine no problem. As he got a bit older he would pace only when he was bored, not nightly. Then when he was 4 if you tried to stop him he would laugh and look at you, if you called him he would reply and then when I asked him what he was doing, he’d say “walking around”. He was no longer deep into it, he was on the surface and I was always trying to find something for him to do, I knew that once he started pacing it meant he was bored and didn’t know what to do with his time. A few months ago we were at the playground, it was a weekend and crowded most people there were in groups, every child had a sibling or friend. Bilal played a bit on the sets, then tried to initiate a pirate game with the other kids but when they all ran off with their own friends I think he got overwhelmed or just bored by himself, he started walking around the playground with that intense expression on his face, I was pushing his younger brother on the swing and could see him but then his circle took him behind the bathrooms where I couldn’t see him so I quickly scooped his brother out of the swing and quickly got Bilal and went home. I told him at the playground you play on the sets or with someone or we go home, we don’t walk around like that. He kept saying “But I have to walk around” he wouldn’t elaborate and I didn’t get it and worried about him in Kindergarten and beyond.
Recently he was walking around the house so I told him to stop and find something to play with, telling him he had a lot of toys, the computer, Xbox etc… So he sat down and said, “but now I cant see the pictures”, I tried to have him explain what pictures and what that had to do with walking around, over the next few days his dad and I would ask him about the pictures, and what they were of. He finally explained that he sees Power Rangers his newest favorite show while he’s walking but the pictures stop when he sits down. I’m not sure if he’s replaying show scenes in his head or imagining himself as a Power Ranger but his imagining only works while walking around for some reason, like the movie reel is attached to his legs.
So I told him” You’ve been walking around like that since you were 2, what did you see when you were 2?”
Him: “I don’t know”
Me: “when you were 3?”
Him: ”I don’t know”
Me: “when you were 4?”
He: At first, “I don’t know” then he said “camp” but he would not elaborate (could be either the boy scout camp he went to with his father or the summer adapted sports camp he attended.)
Me: “and at 5, its Power Rangers?”
Him: “Yes, I love Power Rangers, its my favorite”
So as he’s getting older and more verbal we’re getting little explanations for the things he does and those odd little things are getting less and less intense, I’m actually looking forward to more explanations and understanding what’s going on in there.
Bilal is in a “why” phase. One of his main speech goals at school and in private therapy these days is answering the “why” question without picture support. He’s figured it out and is on a roll. Anything you tell him even if its something so normal and routine has to be hit with “because why?” or he’d repeat what I said into a question. Example:
Me: “Go use the bathroom, its sleepy time”
Bilal: “Why go peepee?”
Me: “Because I already told you its sleepy time”
Bilal: “Why is it sleepy time?”
Me: “Because sleepy time has always been at 8″
Bilal: “Why is sleepy time at 8?”
Me: instead of answering I just end up demanding that he go use the bathroom already!
and so on and so on. He even asks why if we’re talking to his brother. Its great that he can change a sentence into a question, but it gets annoying really quickly, trying to come up with answers, because, because I said so, because its a rule, because that’s how its always been. His therapists are coming up with answers too, his music teacher just answers with because, his physical therapist told him he only had a 5 question limit, that he uses up within the first 5 minutes, and I’m trying to work on smart questions versus silly questions, to only ask questions he doesn’t already know the answer to and not to question the rules and so on. Just recently his questions sometimes have gotten smarter. In the car I can see at the edge of my vision him looking at his outstretched arms and studying them and then he asks, “Why do we need bones?” or “Why do we have fingers” those questions I enjoy and don’t mind answering and discussing why he thinks we need those and explaining how stuff works, its the silly questions that really bug me lol. I always heard that the “why?” phase is usually around 3 and a half, but at that age Bilal was just starting to put 2 word sentences together and didn’t comprehend questions at all, so I’m glad he reached a developmental milestone even if its a couple years late.
“How long does this phase last?”
“How best to answer all these why questions?”
My little guy turned five this week. A whole five years mashaAllah, its such an amazing milestone. When I was a kid I thought five was so cool because you stick up all the fingers on your hand, and high fives and such. Needless to say Bilal thought it amazing as well. He’s been into the calendar and the days of the week and months since I’ve gotten a dry erase calendar on our fridge which has all his therapies and appointments, I also draw a little cake with the age of whoever’s birthday it is, so every few days he would count the number of days left and the week before his birthday he’d say “we’re on top of my birthday” . I kinda went all out for him, the first year he’s aware of his birthday and that he’s turning a year older and he kinda understands that he was “born” or came as a baby on this day. So I ordered cupcakes for his in class party, and went had lunch with him sang happy birthday and left, they have this crown with 5 candles on it for him that he had on the whole day even when I picked him up.
I also ordered some cupcakes for his swim teachers as it was his last day of swimming for the year, we may go back in the Spring. They really enjoyed that and they also sang Happy Birthday to him. We then had music and she printed out the notes to the Happy Birthday song and they played it on the piano and sang it and had lots of fun as well. He was also really looking forward to his birthday because of a certain gift. His favorite Xbox game was Disney Universe and somehow we don’t know how he broke it, most probably stepped on it and he was really sad and wanted us to fix it and we told him if he was good and took care of his stuff we’ll get it for his birthday, and this was a few months ago, he got a couple other games since but he wanted the Disney one. So we got that and I wrapped it up and got the Rio game as well, a singing birthday card, balloons, a banner a couple party hats (which he refused to wear cuz he wanted to wear his school crown), we had my cousin, her husband and daughter along with my brother to come over for cake and it was so much fun, he had a blast and enjoyed all the singing and he was able to blow out his own candles, an achievement for him, just a few months ago he didn’t know how to bring his lips together and blow. He got Lego and Angry Birds gifts and we haven’t opened them all yet, as we’re opening one at a time. I barely took any pictures of my own but thankfully my cousin’s daughter a professional photographer snapped some beautiful pics. It was great something truly memorable, and next month is his brother’s 2nd birthday, we’re not really gonna go all out for him but just cake and balloons and a couple gifts, he’ll learn the meaning of birthday’s sooner than 5 I’m sure but for now he doesn’t get it.
Bilal has been back in school for 6 weeks now and is doing great. He was super excited to start school and had no problem transitioning and moving into the other class. This year those closer to 5 are in one class and those closer to 3 in the other. The week before school started there was the open house and he was so happy to see his school and class and he asked about all the toys and was disappointed that we left so quickly. The first day of school I walked him to his class and he didn’t even look back went right into playing and he had a great day. His teacher this year, Ms. Tiffany has 11 years of special ed experience and it really does show, regular emails sent out, the daily report sent home completed everyday, she has a song or game for everything which is great for Bilal, he came home the 3rd day of school already singing the songs and telling me the story of the month. As his birthday is at the end of September with barely a month of progress achieved she had a progress report and notice sent home and a draft IEP and was all set for his annual IEP meeting. Went to the meeting and it went really smoothly, I added a couple goals to the draft, went over concerns and got an idea about what to expect next year for Kindergarten, with a transitional meeting due in Feb. He’s met all pre-K cognitive goals, most social goals but almost none of his fine motor goals, with only an hour a week of school OT therapy they’re trying their best to get him writing and using scissors, also because he never sleeps during nap time they let him rest for a few minutes till all his classmates fall asleep and they take him out for some extra therapy which is great. Ms. Tiffany says that next year he’ll most probably be placed in a typical Kindergarten class with support and therapy so we’ll see when Feb. comes around and also whether we’ll move or not and which school he’ll go to then. He’s the oldest and most advanced in his class, with 2 other high functioning classmates so they’re working hard on keeping him challenged and learning all his pre-k skills and even a little of Kindergarten skills like reading. Alhamdullah I could be happier, so proud of him and really grateful for such an experienced team to help him progress even further inshaAllah.