P.S. on the Gluten Free...

I already cracked on the Gluten Free diet, by day 2. They were offered a cookie at the store, and I let them have it. Dammit! Weak weak, weak as water (me, of course, not them). Will try again tomorrow...

Our Over-Scheduled Summer - or, How I am Learning to Chill Out and Enjoy the Summer

Pretty hefty title considering that summer has only JUST STARTED, but just listen to what I did to my poor kids.

Bike camp took up all of our first week of summer, and I was warned to just let him relax when not in camp, so he can process. Sage advice, need to heed it more often. But this week we were off and running on our summer schedule. Now, when I was setting up the summer plans, I was soooo proud of myself. I think I mistook (again) a shit-load of activites for good parenting once more. Mornings at the day camp at Beaumont, then 30 minutes to choke down lunch and down to Grant Pool for swimming lessons (both kids), and then on Mondays and Tuesdays we dash over to the Artz center for speech and social skills, and then on Monday and Wednesdays, we still have martial arts for Isaac from 5:30-6:30. And on top of it, we would be starting our new Gluten-Free diet! Aren't I great! See how I keep my kids engaged through the summer!

Well, will let you know that this new summer schedule didn't even last one day. I think I made it to noon, and then it fell apart. I spent more time than expected adjusting Isaac to the Sun Day Camp (he attended two years ago, and the director remembered him and was so happy to have him back, and we are flying minus the inclusion services to see how it goes), and while he had fun in the end, I was on edge. By lunch time I was so proud of him for not becoming too anxious by the new routine, that I took him out to lunch (Pokemon toys at McDonalds, damn you marketing team!), and missed the swimming lesson. Oh well. We managed to get to everything else that day, but it was obvious there was a little burn out.

So here we are, day two of our Official Summer, and we have already dropped out of swimming until end of July. I can tell myself that it's too cold for the outdoor pool, but ALL of last summer was too cold and we still managed to splash around.

I remind myself that back in my day it was ok to sleep late in the summer and watch Scooby Doo while eating cereal, that I wasn't being shuttled off to camp and swim lessons every day. I need to relax, and let them too. Well, at least until I start to feel guilty again for not doing enough for them and start searching for openings in random Portland Parks and Rec classes...poor kids...

Bike First NW: Lose the Training Wheels Camp Ends!

I will start by saying that the Bike First NW Lose the Training Wheels camp was worth every penny, not just because they got Isaac up on two wheels as advertised, but because they seemed to have shifted his entire attitude about bike-riding in general. He gets on the bike for our daily practice runs without a single complaint, he does not get frustrated when things don't go perfectly, and when he was nipped by the bike and bled from a small scratch, he managed to not sound as if the injury would lead to an eventual amputation, but instead asked for a band-aid and GOT BACK ON THE BIKE!

Now, we have only cruised around the church parking lot across the street from our house (only filled with cars on Sunday, perfect location), and over on the Jefferson HS Track that he learned on, but we will get there in good time. In the meantime, I jog alongside him and challange him to "races" (helps motivate him to keep pedaling faster). And the second miracle from the Bike First camp...I find that I can (when properly motivated) actually jog for more than 2 minute stretches! I might survive the Zombie Apocolypse after all!

Bike First NW: Lose the Training Wheels Camp, Days 1 2 & 3

It is a summer ritual. We trim up the backyard, start regularly scooping up the doogie doo, hose out the long-suffering kid-pool, buy a Costco-sized (yes, I use 'Costco' as a verb) bottle of sunscreen that gets lost by July 4th, and purchase Isaac a new, bigger bike to fit his new, bigger frame. Does the helmet still fit (always 'no' - he is wearing an adult sized one now. Thank god I didn't have to push that noggin through my nether-regions when he was born)? Does it come with training wheels? Good.

And then the bike rusts, unused and unloved in the backyard. To be fare, it has good company - my big pink cruiser sits beside it, similarly avoided. My husbands street bike taunts it from near the gate. Screw you, you yellow Bike Gallery Snob! What even makes this more tragic is that I live 4 blocks from a major bike highway (N. Williams) in one of the most bike-obsessed cities in the U.S. I also don't hike and will only camp if there is a working toilet within 50 yards, so yeah, I am a BAAADDD (native) Oregonian.

Anyway, we do try to get him on the bike with the training wheels. But he just hates it. He freaks out in the most Isaac-of-ways, usually involving screeching "I'm going to die!" if you don't hold on the the handlebars and walk (never have to run) alongside him. And note, this is WITH the training wheels. We would pull it out once a day for a week, get burned out and maybe bring it out once a week, and then by July 15th, it was locked up until we donated it to GoodWill. Until Spring bloomed in our hearts, and with renewed vigor, we bought the next one.

So what was wrong? Well, his balance was horrid, a combination of anxiety and nature. This kid crashes into the living room walls, which have not moved in 110 years and are still in the same location as when he moved in at 5 days old. He has issues paying attention at times, especially when trying to combat his anxiety, and is notorious for not looking where he is going. He further more was very stiff in his hips, and had a hard time pushing the pedals. We did not give up, but when faced with kid who rises to challenges each and every day, it became to hard to push one more in his face.

Last summer we were told about the Lose the Training Wheels Camp, a national program that travels every summer teaching kids, NT and not, how to ride a two-wheeler. We were too late for Summer 2010, but I jumped on it this year and we signed up for the 5 day bike camp for kids with disabilities. It sold out fast.

The camp started this week, Monday. Isaac was hesitant, telling me over and over that he "wasn't ready". We signed in at Jefferson HS where the camp was located this summer, put his name tag on, and had a snack and quiet time before going in. Still, he wasn't ready. Then his spotter came out to introduce himself, and Isaac was not ready, but dutifully followed Elliot into the gymnasium. The door was closed, and that was it.

The program is as such: there are 4-8 kids per session, 5 sessions a day, with 2-3 spotters per rider. Each session is 75 minutes long. They start out on special bikes fitted with rollers for a back wheel, which is slowly raised throughout the first few days. If the riders need additional help, they then move to a tandem bike with their spotters, and then to a two wheeler with a special handle before hopping on their own bikes and moving outside to a runners track (if you want to see it in action, go to YouTube and put in "lose the training wheels" - there are tons of videos of previous camps and campers). They are also taught the basics of safety, braking, self-starting, and staying focused. There is a success rate of 80%. I guessed our success rate was more like 70%. Could they even get him on the bike? I couldn't.

Day one he emerges with a big smile. "I did it mom, I was GREAT!". Oh joy, he had fun, which was so much of the battle for us. Now Isaac is quite the politician, and even when he HATES something, he will say he loved it, but then not want to do it again. But the next morning he put on his camp t-shirt and went back in the gymnasium with a smile on his face.

Day two - he improved. They gave me his daily update, and balance and focus were still on his to-do list, but so was his progression to a higher and higher roller. And more enthusiasm. My sweaty and happy boy received his daily prize (Day 2 was an REI water bottle), and talked about coming back on Day 3 and trying it on two wheels for the first time.

Day 3, and 15 minutes after I sat down to amuse Olivia, I was told to gather my things and head outside to the track with my camera. And sure enough, there was my baby on two wheels with his spotter running alongside him, no roller, no training wheels, and laughing with joy. Day 3, and he was doing it!!! Sappy sissy that I am, I cried a bit. Quietly and quickly.

Bike First is very strict towards the parents and very positive towards the child. The list of rules the parents have to follow to attain (and maintain) success is pretty long. I will go into that more in a future post. But so far, I think it is all worth it. The simple joy of the wind in his face, doing something so average as riding his bike. It is so worth it.

The GF Diet - AKA How to Suck the Joy Out of Life

I have resisted the GF (and CF) diet for my kids for years now. Resisted? I RESENTED the damn diet is more like it. Maybe it's because we live in food-obsessed Portland, where I feel the need to hide the bag of Cheetos when we have people over, or maybe because when I place the GFCF products at New Seasons into my cart I know that I am basically going to be buggered at the check out stand. Yes, I buy organic and shop locally, so do I need ONE more thing to feel guilty about?

Apparently, yes. So this summer we are going GF as a family. 8 week trial run, while I am still home with the kids and we have the time to carefully handcraft their foods. And only GF to start with - I have not the strength to do both right away.

So back to looking for more than odd preservatives and food dyes on the boxes. I love my babies, and they are worth the hassle. I feel good about this decision, and announced my intention to friends and family. I picked up a range of GF cookbooks from the library to give me inspiration.

And now I am pissy again. It is like a guidebook on how to make eating suck. The list of things to avoid looks like my damned GROCERY list - pasta, bread, oatmeal's, cookies, and if I add the CF to the list, well there goes butter, yogurt, yummy milk and ice cream. How can I really say goodbye to my greatest love - fresh bread and whipped butter? Really?

*breathe*

Yes, we will do this. Summer is a good time for lots of grilling, fresh fruits and veggies, colorful trips to the farmers market and cooking at home. And if after 8 weeks, I see changes, then ok. And if not, I am marching us down to the Pearl Bakery and going at it with wild abandon!


Of course, the above statement does not account for the fact that my kids will hate it, and are damned picky eaters as it is. Can we do it without cracking?

Light Up the Phones: Push for Hearing on SB 555

An amazing mom clued me in to this push to pass SB555, an Autism insurance reform bill, that would reimburse families for costs related to medical treatments related to the diagnosis. For more information regarding this bill, please refer to the link to the right labeled "Autism Votes".

(The Following is from Autism Votes: What the "push" is trying to do)

Here is how YOU can help: You will need to call each day until we say STOP. The People answering the phones should be breathless from answering the phone so much - if they aren't, redial and do it again!

1. Sen. David Nelson - 503.986.1729
2. Sen. Richard Devlin - 503.986.1719
3. Sen. Peter Courtney - 503.986.1600

All you need to say is:

"Hi. My name is (name). Please hold a hearing on SB 555, the Autism insurance reform bill. New cost estimates from PEBB/OEBB indicate our state CAN afford this. Thank you."

After you make these 3 calls, send a quick email stating the same thing.

Spread the word!

One More First in the Books: O and her IEP

It is the IEP dance. First-timers might be surprised by the performance, thinking it either too slow, too fast, or generally lacking in finesse, but those of us in the know see it for what it is. It is the strip-tease without the T&A, the sometimes painfull disrobing of your childs abilities and how they do or don't fit in with the mainstreamed students. The student you mentally (or in my case, physically as well), brought into the meeting is transformed from the person you know into a series of percentages and deadlines.

But most leave feeling the same way: disappointed.

But not me. No way, uh-uh. Because after years of IEP meetings with Isaac, I have learned a simple survival trick.

Are you ready to hear it? Shhh, move closer. I will tell you if you promise not to pass judgement. Oh, hell. I will tell you anyway...

Lowered Expectiations. YES! I said it! Not about my child though - I lower my expectations about the MEETING. Because you know what? It is not really regarding my childs' academic future. Her academic future is a fluid thing, and I can gurantee we are not going to fully understand that in Kindergarten. We are creating the loose framework of her next year, to see what works and what doesn't. And if it doesn't work, we will change it. And I know we can change it in a heartbeat if I want to.

But I have learned two very important things from past IEP's.

First: Manage the Behavior and the Academics Will Follow. This should be obvious, but in many an IEP meeting, it is not fully addressed. I have learned this from my son who was labled as being at "high risk" for academic failure (I have read and re-read that particular IEP from Roseway and all I can see is the hidden word 'retarded' all over it, rat-bastards). Finally, at Pioneer, he learned to get his behavior in check and then suddenly there he was, not only catching up to his grade level but passing it in two subjects, in the space of 6 months. So I made sure that on her IEP the focus on Kindie was her behavior, because how can we expect her to learn in circle time if she is too anxious to even sit down with her classmates?

Second: This is Not A Sprint - It is a Marathon. And the route is not well marked, so it is ok to go off the beaten path. I really don't care about standardized ANYTHING at this point - and if my son or daughter solves a problem in a unique way, they are not going to be penalized for it. I am raising human beings, not robots, and Autistic ones at that. Their hardware is different, and I will do my best to make sure that they are proud of that, not ashamed. The finish line is there, and we will cross it (and for us, that finish line is to get the most out of the life they are given).

(My husband just pointed out that I sound a little 'rant-y'. Sorry).

Walking in with those two ideas in my head helped me to have what I would describe as a successful IEP meeting. She is going into a CB classroom (next door to Isaac's), and will slowly be mainstreamed through the year. The focus will be her behavior, and we are slowing down so we catch things as needed, instead of letting them all and scatter on the ground (oh, poor Isaac. Kindie as rough for him). Yes, should might be fine in a mainstream class. But there is a big difference between swimming and just dog-paddling.

End of the Second Grade - Our Grand Experiement at Alameda

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?