Parent Teacher Organization

Face painting at PTO Picnic

Well, I've officially started it.  A Parent Teacher Organization at my son's School, Building Bridges.  I am getting us incorporated and more importantly getting us 501(3)(c) status.  There is a lot of paperwork involved and I hope I can do this on top of creating a business.  I have my plate so full right now I can barely think straight!  Busy is good though.  I seem to be happier when I'm working.

I have the best group of people on the Board, helping me with the PTO.  I am amazed at the enthusiasm and support these parents want to give the school and their children.  This picture is from the first activity the PTO arranged.  The ladies who did it are wonderful!

I'm so glad to be starting an organization dedicated to helping improve our children's education as well as support other parents of spectrum children.   I'm also very tired from the extra hours I'm putting into getting us non-profit status.  So I am ending this entry and going to bed!

Zoo Train

 
I wrote this in response to a statement another parent of an Autistic child made.  She was just saying how unjust it was that the Asperger population as a whole was overlooked as needing treatment.  She was wondering where the MLKs of the Asperger world were.  How we could get a grass roots organization going, etc...  I wrote this in response:

 "My daughter will be turning 9 this month. And, yes, it's difficult for me to watch the social deficits and know I've not the training or experience to clinically help her. Right now my 4 yr old son can only say a few 3 word sentences, if that and all of my resources have gone to him in the form of private therapy. I tried to get my daughter on a 504b, but I guess that's for more physical supports in a classroom. This next year I'm thinking of volunteering at her school and possibly running some kind of social program. I'm thinking like, a social tea at lunch, or even science club.....SOMETHING where I can be over there and watch her interact with her peers. At this point, financially, it's my only option.
As far as Asperger MLKs, (from what I've read) the Asperger community is diverse. There are a lot of outspoken Asperger individuals but most seem to be centered on awareness and acceptance. Which I think is fine, and wonderful and I agree and all that, but I have a daughter who cannot read visual cues, intonations, inferences and other socially aware "norms" and I worry for her future just as a young woman. It's a scary world out there and you need to have street smarts as a woman. For me it's a safety and quality of life issue. All of this seems to get lost in debates. But that is why I think the Asperger community doesn't have one voice. Just because of the diverse opinions regarding "treatment" vs "acceptance' vs "diagnosed levels" and who is considered Asperger and who is not. Some days I find it amazing we can even paint the diagnosis of Autism with such a broad stroke. There are definite characteristics and traits, and yet, all are so very different. It's hard to unify all of that even in my own mind. lol"

Rumor has it that the F.E.A.T. of Oregon collapsed under such debates.  I have no idea if this is true or not, but from the little experience I have as a parent of very different Autistic children, I can see how heated debates can easily spark.  Parents are stressed out, frustrated, have very little support for themselves and feel very passionate about their children and about the decisions they've made regarding treatment.  Also, heated reactions could be a matter of habit since so many of us have to continually argue for therapy with districts, family members or even a spouse or significant other.

So how do parents unify under such diverse circumstances?  Many parent organizations have been successfully created and run under such conditions, why do they succeed where others fail?  I'm guessing in "the people."  Man, I hope I can make this Parent Teacher Organization work.

Two words for how I'm feeling right now as a pro-active parent of an Autistic child......
zoo train.
(Which is actually very nice.  The Zoo's train in Portland.)

Rolling Robin

I know this isn't a Reliant Robin.  But it reminded me of one.  I saw it parked by the Willamette River.  The Robin was a car with 3 wheels, which meant that it rolled very easily--as you can see by the scratches and dents all over the side.  There's a show on the BBC called "Top Gear" and they did a segment on the Reliant Robin.  It's a great segment and every time I have a difficult day, I like to watch it.  It makes me laugh.  Here, I'll share.......

http://www.youtube.com/watch?v=QQh56geU0X8

What's In a Name?

What's in a name?  Well, a few hours for these two.  I did them for the therapists at my son's school, Building Bridges.  It wasn't a difficult project, just the first project I completed on a scroll saw.  Thank heavens my son likes to play around where I'm working.  It's a much needed distraction and break from my every day.

Parent Involvement

I've been busy creating a Parent-Teacher Organization at Building Bridges.  I thought I'd be a member of 1, but several people showed up at the first meeting, giving me a lot of hope at organizing things further only to have the 2nd meeting not go so well.  The hard part is that volunteering is work; and with parents of spectrum children, they might not have the time nor the energy to do more.  I know I feel like I'm barely hanging on some days, so in some ways I can't blame them.  But, I'm pressing on.  My July meeting is coming up.  I have to see if I can track people down, see if we can come up with a better time to meet.  Then, maybe we can have a better turn out.

Traveling With Children on the Spectrum

It's summertime and many people will be going on vacations.  Some people will go on planes, and some will go by car.  Luckily, I have tips for traveling either way.

DRIVING

Driving for many children is difficult, in some ways I think my ASD children handle road trips much better than NT's (neuro-typical, what we call normal) children.  Mostly because they are visual and can enjoy the scenery and have a lot of patience for video games and reading.  They also seem to like the security of the seat belt.

1.  Make sure you have comfortable car seats.  I drive my children around a lot and when the seat gets flat and worn out, I get a new one.

2.  Try and plan out a stop, every 2 hours.  I have a great app to help you find travel centers.  It's called "AllStays Truck & Travel."  I have an iPhone so I don't know if they have an Android equivalent, but it's the best $5 I've spent on an app EVER.  It not only gives you the gas stations and travel centers, but also nearby shopping, in case you need to pick up something, like wal-marts and malls.  It also can give you up to the minute gas prices as well as maps and exit numbers.  I just LOVE IT!

3.  Try and give the children something new to play with after each stop.  Whether it's a new game for the 3DS, new iPod app, or a toy they've forgotten about.... it helps give them a renewed interest in something to take their minds off the travel.

4.  For my older Aspie, I like to share maps with her so she can see where we're going.  It also teaches her how to read a map;  a very useful skill.

5.  I recommend leaving early in the morning, as early as you possibly can.  My children and I drove south about 13 hours and it made the trip much more bearable leaving at 5:00 a.m.  Children's patience for things is best in the morning hours.  Once you get up around dinner and bedtime, they are a lot worse to manage in a vehicle.

6.  I would take small snacks to space out along the drive, capri suns, fruit snacks, granola, etc....  AND I would pack small bags for garbage, a box of tissues, a roll of paper towels and hand wipes.  You can never be too prepared!

FLYING
(I wrote this post on the website www.myautismteam.com under traveling tips.)

Flying with a non-verbal, lower functioning ASD child:

Go to the counter and ask for a special needs pass. It will let you board the plane first, alleviating the stress of so many strange faces in a crowded plane. I have had no behaviors with my son since I've done it. Some airline clerks are nice about it, others not so much. Ignore them. You're giving everyone a better plane ride because your child will not be stressed and screaming.

Flying with ASD children in general:

Electronic devices are great for planes but 2 things you need to think about....

1. Will my child freak out when they ask you to put this electronic device away? If they will, wait until you are in the air before giving it to your child. When you have to put it away, try and have a favorite snack, book, or other non-electronic something available to switch them out with.

2. Will my ASD child insist on playing a noisy game over and over at high volume? Try and make sure your phone, iPod, iPad, or other electronic device has some kind of volume control, or remove the games that are loud or otherwise obnoxious. If your child can do headphones....GREAT! If not, this will need to be something you will want to think about.

3. I make sure I have hand wipes available, clorox wipes (an ounce of prevention is worth a pound of cure....flying back with sick ASD kids is not something you want to do! That, and my 3 yr old stimms by biting his hand), and a small plastic bag for garbage.

Hope these thoughts helped. Happy traveling!

Too Much To Finish!

I've been busy!  I'll blog about my latest adventure in my next post.  But for now, I'm FINALLY finished with my quilts!  One is for my son, and one is for his ABA therapist's new baby.  If anyone out there has 2 children on the spectrum.....getting food cooked, laundry done, and the house cleaned is a feat in it of itself.  But, I got the quilts FINALLY done!  (It took a month.  Pre-Autistic kids, I could knock two out in a day!)