Our journey through autism

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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

Because why?! why? why? why?

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. 

My questions:

“How long does this phase last?”

“How best to answer all these why questions?”

Turning 5

5th Birthday party Balloons

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.

School Party

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.

Birthday Cake

School Update

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.

 

 

Going Green

This isn’t really directly related to autism or to Bilal’s journey but its something that might make a difference in our lives so thought of sharing. A lot of you may have already gone green, organic and all natural once you got the diagnosis. There are countless articles and research that suggests that environmental factors may cause or increase the risk for autism. The most exposed to toxin may be household cleaning products. The chemicals used in store bought products are harsh and expensive, so eliminating  those whether your child has autism or not is a good idea for you and the environment, more importantly during pregnancy and infancy, where the developing baby is most at risk.

 

Green products

Going green is easy and so much cheaper, most probably you already have all the ingredients you need right in your house or a quick trip to your local supermarket is all that is required. Most common ingredients are:

  • vinegar
  • lemons
  • baking soda
  • hydrogen peroxide
  • rubbing alcohol
  • cream of tartar
  • essential oils (mint, lemon, lavendar, etc…)
  • Dawn dish-washing soap (not natural but not harsh and adds major cleaning power to the above)
  • Borax

You’ll also need spray bottles, rags, towels, sponges or cleaning brushes.

 

The only cons I can say with going green is that it takes a bit more time, you have to mix and prepare the mixes before each time you clean so as to be most effective and the cleaner will have to sit or soak for a bit as well. But really its minor and the pros are way more important.

You’ll find countless recipes online, Pinterest and Google are your friends. Mixing those stuff together really do the job and its all natural, cheap and isn’t harsh smelling or dangerous. I clean my bathroom and kitchen with these mixes and they really shine, no soap scum or grease or residue with these.  Some people do their laundry and dish-washing with their own DIY cleaners. People have also made their own paper towels and wipes, so even less waste…  So look into it for your safety, your children and that of the environment.

 

My favorite website is One Good Thing by Jillee found through Pinterest, she’s all into DIY cleaning products and organization tips.

 

Progress Update

This post is way overdue and I really have no excuse, part busy and mainly part lazy. It’s been a little bit over a year since we got our US official diagnosis, a year of school and private therapy and activities. What a year its been! Its been busy but a good busy, yes I’m driving around pick up from school go to a therapy pick up baby bro from daycare get home and repeat all over again the next day, but so worth it alhamdullah. A week after school let out we had a follow up visit with his developmental pediatrician, she did a re-eval and he scored at the developmental age of 4 years 1 month (he was 4 years 8 months old at the time) a gap of only 7 months, she was really impressed and told me to continue what I was doing whatever it was and come back for another re-eval 9 months later in Feb. I was so happy and proud of Bilal in only 9 months of school and therapy he has grown almost 2 years developmentally, when we went in for that initial eval he was almost 4 but developmentally at the age of 2. I don’t know what it is that really made a difference, prayer mainly,  he was going to school everyday, private speech, OT, and PT, therapeutic riding, hippo-therapy  music therapy, adapted swimming, myofunctional therapy, adapted piano, adapted summer sports camp, a couple sessions of feeding, was it a particular thing or all of those put together that helped Bilal communicate and grow so much I will never really be able to pinpoint it. Also his younger brother is growing up and developing well and he has a constant playmate that might teach him things. Since we started school and therapy Bilal has turned into a totally different kid, no more tantrums or headbanging, he’s speaking in sentences, answering questions, started asking questions, he’s finally made progress with holding a pencil and writing, he states his feelings and opinions, he rarely gives me any trouble (unlike his little bro, pre-terrible twos). The really autistic behavior that still stands out I guess would be occasional toe walking, pacing when really bored, sometimes he’s locked in his own world when playing or concentrating on something, incorrect social interactions, eye contact avoidance, and picky eating. His pronunciation has improved greatly but still no L or R both are Y or W sounding but he’s working on it and its getting better.  I’m excited about what this new school year and therapies will bring for Bilal’s continued progress. I need to write another post soon about how he’s been doing these past 3 weeks since school as started again, I’ll try to write that one real soon. 

Just asking anyone who reads this to remember Bilal in your prayers and pray for continued growth and progress. Thank you.

Summer Camp

During the last month of school I was getting nervous about the summer, long days with nothing to keep him busy. From 7am to 9pm with only an hour or two of private therapy isn’t enough. It was always the case when Bilal gets bored to act up, throw tantrums or the very least start pacing about. At the end of March there was a camp expo for children with special needs that I went to check out, the camps were either for older children, too far or too expensive. I couldn’t figure out what to do and thought the camp being held by his horse back riding instructor the best option even though it was too far to go to on a daily basis. Then during the last week of school his teacher sent an email about a camp but it was for children 5-12 years old and Bilal wouldn’t turn 5 until the end of September, I emailed the instructor telling her that Bilal wouldn’t turn 5 until the end of September but that he was high functioning, potty trained and able to communicate well and if she would please consider him. She agreed and I sent in the paperwork. It was a sports camp and the instructor Maureen Wales  is a special ed physical ed teacher, the camp is called Camp Moementum and it was only $100 a week taking place at a local park on their adapted fields. I signed up for the first 2 weeks of June, but sadly Bilal woke up the first day of camp with a fever and wasnt better the next day I was so bummed that with a 10 day camp he already missed 2 days of, but as soon as he got better we went and he loved it, they played on the fields, the playground, went on hikes, they had a bounce house and a water slide and go carts and basketball,  laps, arts and crafts. The had a cook out one day and somehow they got him eating hot dogs something he just wouldnt eat at home. There were several teenage volunteers and she had them working and looking after each child. At the end of the 2 weeks she said she’ll extend it for another 2 weeks, perfect ! I signed up for those, and he really enjoyed it, he won at BINGO a couple times and got little toys, he got a beach ball, and t-shirt, 2 caps. Siemens came one day with a whole science expo for the kids, I cant wait till next year for him to go again.

So thanks to Camp Moementun we were able to fill up 1 of the 3 months of summer vacation. On friday I’ll look into music therapy, adapted piano lessons or something for Bilal to work on, and we’re still doing his private speech, OT and PT sessions, adapted aquatics and horse back riding lessons, and on yeah we’ve also started on the myofunctional therapy. So he’s not bored, the tantrums are a thing of the past alhamdullah and he rarely paces about. He also watches Disney Junior or PBS Kids, plays on the laptop, iPad or XBox, and all this time off school he’s playing a lot with his brother and he’s making amazing progress mashaAllah alhamdullah. I’ll write a progress post in August after he’s been in therapy for a whole year.

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