my son - really long AS update & book request

Sorry for starting ANOTHER post on this, but I didn't want to thread - hijack.

I feel like I'm swimming upstream through sludge here. After getting the entire "we lost all of your records" fiasco sorted out, the district seems to have forgotten how to answer their telephone. I've had exactly ONE phone call about scheduling my son's evaluation, and it just happened to come in while we were at the doctor's office. I've called back no less than 30 times now, but somehow I just happen to have missed them & gotten their answering machine every single time. And NOBODY has called me back yet... since July.

So I'm sitting here with a preteen who is frustrated by the smallest change in routine. He is trying to develop that teenage sense of "self," but still has problems with things like socks that have been washed separately & one takes on a slightly more faded appearance, or when a new child visits our church group. I want to help him, but I don't want to step on his toes... I know he needs to learn to do these things on his own, but he can barely hold a conversation with the boys in the group without getting frustrated by things like their interrupting each other or being distracted by a leaf blowing across the floor.

Does anyone happen to have any must-read books on their list? I feel like we're doing this all on our own at this point, and I could really use some suggestions. There are over 100 books at our library on AS and Gluten-free living, so I was hoping that maybe I could start with a few that someone else has at the top of their list. I think for now I'm specifically looking for anything that might deal with helping my son develop coping-skills, and parenting books that might help me know how I should be reacting to things like meltdowns... treating them the same as I would a typical tantrum doesn't seem quite right, but I've never really known WHAT to do with him when he's completely lost it.

I've given up on the school district. I'm tired of their incompetence. I'm tired of their noncaring attitude. I could care less that they're the least-paid district in the state, it doesn't take 5 months to answer a phone. I called the specialist back, (we were supposed to have gone back in September to go over how he's doing in therapy & discuss "the next step") and told him exactly how "helpful" the district has been and that we still haven't gotten in for evaluation let alone started Occupational Therapy. The doctor was aghast, and said he would see what he could do from his end. If I get somewhere with that, great... but I'm not holding out much hope at this point.

In the meantime, I've started my lil guy on the gluten-free diet. It sounds like it may be a bit of a long-shot, but from talking with other mom's of AS kids it sounded like it's better to try & have it not help, than to not have tried it at all. I've switched with him so he wouldn't feel so alone, and we're just over two weeks in. Already we've noticed that he's sleeping better at night, and he's only had one full-blown meltdown... rather than the typical 2-3 per week. So just based on first impressions, I think this is going to be a "forever" change. I've also found a few books on how to teach kids to cope with their own frustration, and it seems to be helping a bit. Instead of hitting his sister he actually came to me last week with his issues, and we were able to sit down & discuss them rather than my punishing a tantrum that "wasn't his fault." This is a first for him. It's been frustrating knowing that he truly doesn't know how to deal with his problems, but not knowing what to do about it.

And then there's math. (sigh) We're still trudging along. He is now almost a full year behind in math. But if the district can't be bothered to care, I'm going to keep teaching him at whatever pace we can manage, and am planning that by the time he's 18 he will have an understanding for basic "business" math. At this point I truly think that may be all he's capable of. He's a full 5 years ahead in Language Arts & History/Geography and 2 years ahead in Science, so maybe this is just the one subject he isn't good at. I was never very good in math either, so I'm claiming that he has a genetic intolerance for numbers... that's my story, and I'm sticking to it

So yeah, I've not had a whole lot of time to do much other than "deal" with every day as it comes along. But I'm finally beginning to feel as if the light at the end of the tunnel might NOT be a train after all. Oh... and I've lost 5 pounds in the two weeks since the diet switch
love,
mom

 

FWIW - I still won't wear socks that have been washed separately... easy solution, don't wash socks separately even if it means pairing them up when sorting laundry, before putting them in the washer. Heaven forbid I ever get a long hair or tiny pebble inside my socks!

books:
I really liked "Too Fast, Too Tight, Too Loud, Too Bright" (or something along those lines). It's not geared towards children, but it really helped me understand the sensory issues I and my children experience, and pointed me in the right direction to work with alleviating the worst of the sensitivities.

The Explosive Child is a good one, too, as far as dealing with behavior issues goes. You can't use the typical tantrum solutions, they simply don't work because these fits are not the same as tantrums, though they look very similar to someone not familiar with them.

diet:
you can find everything you need to know online. I found http://www.gfcfdiet.com/ to be a particularly helpful website. There are yahoo groups for gf/cf diet support as well, but I found real life support to be best.

and (((((hugs))))) to you!!! No matter what you do, always trust your instincts first and foremost. Things always go really bad for me (and for my children) when I listen to someone else instead of following my heart. Hardest part is getting started. Once these things become a lifestyle change, it's no longer such a big deal as it seemed before.

 

Reading this story, I get to appreciate my mother more.

 

Ya beat me to it, mamaboogie, I was JUST going to recommend

although a lot of this book is for preschoolers and younger children, it is still pertinent to homeschoolmama's needs. There is also, I have heard a new updated version of this book for adolecents.

I'll see what I can find.

 

If you go to this book, it can link you to all kinds of SP (Sensory Processing) books about kids. Honey, I know, I am going through ( and have gone through) this with my kids.


There are more than 40 books on this subject. (there were none when my oldest was diagnosed with Tourette's in 95.)

(Oh crap, I can't link it without all my personal information being included (being an Amazon junkie of sorts.)) Look up the book Too Loud Too Bright Too Fast Too Tight by Sharon Heller, PhD

If you go to Amazon, and click on "others like this" it will list more than 40 books on the subject. I can't vouch for all of them, but I like this one, and "Sensational Kids" If you do a more indepth search, you should be able to find more about preteens with this situation, too.

I know where you are at.

 

Oh wow, thank you both SO much! I've been working with children since I was 12 years old myself... I've always WANTED to work with children. And I've worked with kids with autism & down's syndrome - but this isn't like that and it is so frustrating not to know how to help my own child!
love,
mom

 

oh, I didn't know there were different versions of the book. The copy I have is geared towards adults with Sensory Defensiveness (in particular those of us who had SID as children and were never properly diagnosed or treated for it). I got it for myself, before realizing my children also had major sensory issues.

 

I have to look at mine again (it's actually sitting on my desk right now) I have several books on the subject, and I thought this was the one geared towards kids. Maybe I got it mixed up with the other book, Sensational Kids......or The Out of Synch Child. Homeschool mama. The Out of Synch Child is the one that will be coming out with a version for teens, I believe. Sorry. I messed up.

Now that I look at it, I think you are right. I am so messed up right now, with Sage's Eval coming through. I'm sorry.

 

Yes, and for being "improperly diagnosed" I never had a diagnosis or even any chance to get one. I was declared "Nervous." LOL! OMG.