One week left, and we are filing away Isaac's 2nd Grade year in our memory books. It was a good year, an IMPORTANT year, and the first year he has had since leaving EI three years ago that was, (dare I even say it?), NORMAL. Not in the NT sense of normal, which I honestly believe now that there is no NT Normal, but in a normal school year.
What constitutes a normal school year? It is very simple. Your take them to school, they attend class, have homework, field trips, playdates, school concerts, plays, parent/teacher conferences. What exactly did we do before the second grade? Emergancy IEP meetings, Functional Behavior Assesments, multiple calls from the front office to come get him because of meltdowns, two (yes, two) calls from the Portland Police to report "incidents" in the classroom (both at Roseway - check previous posts for details), an expulsion hearing, and a transfer to a special contained behavioral program at Pioneer.
The biggest emergancy this year at Alameda? His teacher called once this entire school year. ONCE. To report that they couldn't find his lunch box. And then they found it in the classroom. That was yesterday.
What changed? I think mainly we stopped trying to force our square peg into the round hole. He is not a typical student, and finally between us and PPS, this was awknowleged and accepted. And no that he is finding his own rythem, suddenly even the mainstream classes are working.
Next year is a very different year. Classes are going to become harder, the social world more complicated. And we are going to try to be ready for that. Now the focus has shifted to the summer and the first summer off for Isaac since he was 4 years old. No extended year services, no fear of behavior or academics slipping during the months off. Might need to call it our "Summer of Being a Kid".
Still, I am looking towards fall already. His mainstreaming is going to increase, which is good and scary. Isaac is getting bored in his CB classroom. It is a CB Academic, but he comes home asking why some of the older kids are not doing as much as him when it comes to math, reading, and science. And boredom in kids is always a bad thing.
So, what are you doing this summer?
What are we doing this summer? Intensive therapy at Play Connections plus considering residential treatment for feeding or a feeding tube. And a question that you are not likely to have--how we are going to pay for it? Since our insurance, unlike Intel's, does not cover autism. For us a feeding therapy visit at the Artz Center will be $220/hour. The autism insurance bill SB 555 is barely alive and, unfortunately, Intel has done nothing to help with the bill, we could not even get anybody to talk to at Intel about the cost of coverage (major concern for the legislators who are sitting on the bill at the Ways & Means). So, our summer is not looking so good. We would appreciate any help--calls to Ways & Means co-chairs, for example, telling them how good it is not to worry about cost of care on top of everything else we have to worry about... Sorry about ranting, it's just very disheartening. --Tatiana
ReplyDeleteRant away, Tatiana! That is what this is all about, opening up the lines of communication.
ReplyDeleteYes, Intel sucks on a few major levels, but the one I have encountered lately is their inability to share when it comes to the HR department. It's weird that they could be ground-breaking when it comes to how they approach insuring ASD's, but don't want to talk about it. My husband has had the same problems getting information, even when it applies directly to us. Sometimes we don't even know what procedures and therapies are covered by our insurance until we go directly to the provider and they check on it for us.
Still, most of the time we are covered. I would be happy to talk about how coverage allows us to choose therapy for the kids not based on what we can afford, but by what they need.
We did feeding therapy at the Artz center for a year with Olivia. It did us very little good in the end, but our issues where more sensory then physical. Olivia stopped eating food at a little over 2 years old. As in, back to the bottle and formula. She was tiny as it was, and I freaked out completely. We have tried and tried over the last two plus years to get her back on solids, with only minor results. For awhile, her diet was only crackers and formula. Then we got her to eat yogurt, applesauce, and finally dry cereal. Forget meat and vegetables. She is finally starting to at least try new foods, and only because, at age 5, I am finally able to reason with her. I tell her that she needs to eat certain things so she can be strong and healthy. So here goes a bite of strawberry, bread, beans. Such a basic thing, eating. And the root of so much of our drama...
I hope if he comes home asking why some of the older kids aren't doing the same work as he is, or as much, that you make it a teaching moment and explain that everyone is at a different level in different things and that's OK. Everybody is different and everyone has things that he/she is good at and things that are hard for him/her. And some of the things he has trouble with the same kids who aren't as academically advanced might do better at. Our kids all have weaknesses and strengths.
ReplyDeleteOh yes. I agree, and there has to be a careful balance between building his confidence up and recognizing that we all have weaknesses. For example, he has a classmate with zero math skills, but an amazing passion for art. Isaac can barely use the scissors, and only recently started coloring inside the lines. Life is going to be well stocked with teachable moments. And I try very hard to make a record of all of them. I don't either of them to feel ashamed of their limitations, I mean, we ALL have limitations, and instead be able to embrace them. Like I embrace I am a history geek with bad eyesight and frizzy hair, whose math skills are shockingly bad for someone who has a BS.
ReplyDeleteFeeding has been our major concern since Day 1. We thought we figured it out on Day 7 and managed OK with breast milk and formula until Month 6. And then we started transitioning to solids and are still working on it--Baby Foods #1 were OK but Baby Foods #2 caused vomiting. Most solid food still causes vomiting, so our 5-year old has never had meat, fish, rice, potatoes, pasta, veggies, fruit, pizza, cake, candy, chocolate, etc., etc. At most birthday parties he can only drink apple juice or water, Halloween and other holidays hold no attractions for him. At least after feeding therapy he no longer vomits when he sees somebody eating ice-cream, for example. And he can managed most food smells without vomiting. He's been mostly on liquids for the past 5 years, my mom developed a nutritional drink that has everything in it, our kid has done very well on it until he started refusing it just because he is just tired of it after 5 years. If you are interested, I can send you the recipe, it's basically a smoothy with proteins and grains and fruit and veggies, all made from scratch. It's pretty yummy and very nutritional. So, when we talk to our kid about strength and weaknesses, we say--"some kids need help with reading but you don't, some kids like you need help with eating but other don't, everything has things they are good at naturally and things they need some help with". It helps that he is older and is getting influenced with the media, some food-related stories from Elmo's World and Sid the Science Kid have been helpful. And feeding therapy whenever we can pay for it, is extremely helpful, too.
ReplyDeleteOh yes please! Would love to try your smoothie!
ReplyDeleteO's sensory issue with food is not as strong, but her diet is 60% liquid still. She can handle crisp or smooth, but inbetween is a problem. What is helping is the beast of Peer Pressure - our friend right now. Her friends have done more to get her to take a bite of various foods then the Artz Center after thousands of dollars of feeding therapy. And the Disney-Factor. We are taking the kids for their first trip in the fall, and I have taken to telling her that we need to eat more foods because at Disneyland, there are no sippy cups! It is working slowly but surely.
But, as I mentioned before, her sensory reaction to food is milder. I can't imagine the stress you feel managing this most basic part of existence.