BlogHer - challenges - Comments

I heard that

thriftymommastips — Wed, 17 Jun 2009 15:47:58 -0500

My daughter also will suffer this summer as a result of number one: nobody else other than her very excellent teacher and myself and hubby get her, number two: no programs here at all SW Ontario Canada for special needs - integration baby. (Oh no wait there is a riding program which I just got her into now wait for it what's the problem you say - ohh the waitlist means although she's approved she will probably get in in 1 1/2 to 2 years time.) Excellent! Number three: even when I take her on excursions and excellent week at cottage I will be forced to also run interference between her and other family members - extended - who look at her and believe truly believe she has no special needs, but willful misbehaviour. I sometimes hate summer. In fact last years sucked it big time. I recall my daughter in the sand on the beach having difficulty leaving beach hello sand and water and sun and all the sensory stuff that entails and her grandma taking it personally trying to pull her little arm off to get her to move. Damn!

My daughter finished school on Friday and already is all out of sync messed up what happens next apprehensive and anxious. I hate that life makes her feel like that. Oh and respite - yes I get 2-3 hours a week currently because the Provincial respite program special services at home has no $$$ and so even though 35 new names in London are added to the list and approved a week, no $$$ comes to it. So yes you need respite but sadly we cannot give you $$ to pay for it. Excellent system.

Paula

thriftymommastips.blogspot.com/

Keeping Busy

AutismLearningFelt — Tue, 09 Jun 2009 17:02:44 -0500

I have a lot planned for my 10yo son this summer. He will have his 4 hours a day CAP services. Swim lessons will be done during that time, too. When he is home with me, we will be working hard on getting him to be independent. Or, I should say, I will be working hard at it. I am lucky that my parents are paying for swimming lessons. We have a great park for hiking, and my son loves that. I am a SAHM, so I am lucky enough to have time to work with my son. Plus, I love working with him. Right now, our problem is that he regressed during the school year and I have summer to get him back to where he was and past. We are going to be very busy.

Tammy

@autismfamily: When I clone

Shannon Des Roches Rosa — Fri, 05 Jun 2009 12:17:07 -0500

@autismfamily: When I clone myself, one of that clone's projects will be to start up a network for high-school-aged kids to get service hours (now required by so many schools) by working with our kids during the summer, in a supervised capacity. Grants would fund the supervision.

Despite my comments about a well-trained aide being required for my son, much of the time it comes down to an that person having the right instincts. Not something you can train for. I'm guessing that a good proportion of the kids who would volunteer to help with our children would have those instincts.

But I wish there was some way we could all help you and your kids concretely, right now. Keep us updated.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second

CanISitWithYou.org
real tales of schoolyard terror and triumph

LAUSD family

autismfamily — Thu, 04 Jun 2009 22:02:06 -0500

We are one of those families, but the cancelling of summer school does not include those with an IEP. I am waiting to hear if the aide is assigned, where the school is and the pick up/drop off times. it is only 4 hrs but better than nothing and four weeks.

Our regular summer autism daycamp cancelled at the last minute and had one IPP just yesterday and scrambling to find something for each son. Actors for Autism has animation camp at $500 for a week and the park wants an aide since not toilet trained, can become a vendor with RC and get reimbursed to pay aide $10 per hr, but where would I fijnd $250 a week if we did five hrs?

Been doing the summer camp for 9 yrs and this was so unexpected, spent months working on funding and applications and registration and a waste of my time.

The RC worker told me that they are vendored with YMCA, too bad neither of my kids knows how to swim or to ride a bike. Hard for me to do these things with both when their needs are so different and it is only me doing it all for these 14 yrs.

@kristina There has to be

Shannon Des Roches Rosa — Thu, 04 Jun 2009 14:35:16 -0500

@kristina There has to be some way to get you more help. I am investigating and will get back to you.

@niksmom The LAUSD scenario is ugly. We have a smaller-scale fight going on here, in that the regional center that normally pays for overnight camps announced that they would no longer be doing so. Those camps cost over $1000. That's not in our budget, but we can make it work somehow. What about the families who can't? They're just F***d. Several friends are in due process with the regional center as I write.

@mstaz1112 Why did they not believe you about his not regressing now?

@eckidatri, positive attitudes like yours are what keep the rest of us going, more than you know.

@SouthernGirl aaaargh! As I was telling a friend recently, one of these days we're going to get those Star Trek transporters working. Then we'll start up the biggest bestest badassest special needs parenting kids/parents co-op the Federation has ever seen.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second

CanISitWithYou.org
real tales of schoolyard terror and triumph

One Week

Southerngirl — Thu, 04 Jun 2009 12:34:47 -0500

Here in SC my special girl (a friend's daughter) will get only one week of ESY. The rest of the time is her 12 hrs respite care and mom and dad. I feel for her as she too needs the routine of the SCSDB offers. But our very wonderful (roll of eyes) Gov thinks we do not need any stimulus funds for education.

For my son with ADD there is no summer school offered at his school and the only programs are in other districts and half days. Just what a single mom with 2 weeks vaca can do with that I am not sure? It will be computer time and lots of library time for us.

Michelle

I blog at http://www.mommycan.blogspot.com/

Lucky Here in NY

eckidatri — Thu, 04 Jun 2009 09:53:37 -0500

We're pretty lucky here in NY. The school year ends June 26, there's a one week break and then ESY will start on July 6 for six weeks. Kayla will have the same teacher and 1:1 aide and classroom. There's 3 weeks in Aug/Sept before school starts up (she's transitioning to Kindy and right now I don't even know what school she will be going to!) but that shouldn't be too bad.

its the summer juggle

mstaz1112 — Wed, 03 Jun 2009 09:50:20 -0500

Our school district will not approve my 4 yr old son for ESY because they feel he will regress in the program since its the same as last year. Funny, he does the same work in EC as he did last year and I am not seeing a regression on skills. I'm blaming the economy and the superintendent's payraise.

So this year, he will go to one week of VBS with his sister, two weeks (we hope) of a program at another local church and three weeks (we really hope there is room) of SESPAR day camp. The rest of the time will be shuttled between families and working at home to keep his skills up.

Sum-sum-summertime

Niksmom — Wed, 03 Jun 2009 09:06:45 -0500

It sounds like you've got a good plan in place. Whew. That's half the battle. My heart really goes out to all those families in LAUSD; I heard on NPR this morning that they've had to completely cancel summer school sessions in order to cut their multi-million dollar share of the state deficit. OUCH.

Still, even with the best laid plans, summer is so difficult with the days which seem to stretch out endlessly, the temperatures rising and the need for routine and stability for our children and variety and respite for us. It's a tricky balance which can make or break us sometimes, no?

http://maternalinstincts.wordpress.com

you said what's on my mind

autismvox — Wed, 03 Jun 2009 08:54:06 -0500

This is so well-put. Charlie has school until the third week of June and then will be in ESY for all of July and a few days in August. The rest of the time, it's "M & D" time, all the time----something we more than relish, even as we don't feel we are always up to it, not at all. We do not get any respite hours here in NJ (we're on the infinitely long list for these, and the services and staff aren't necessarily what Charlie needs) and our only babysitters are my parents (who have had their own health problems and won't be able to visit till late August, if then).

There are many camps and programs for special needs kids where we live. But Charlie at 12 is "aging out"---some programs only go up to age 10 and most of the attendees seem to be far younger (and smaller). Some of the programs for older kids just are not suitable (how often can you go bowling, sigh). He too needs 1:1 and has a lot of behaviors that require very specialized training. He's not ready for sleepaway camp. We briefly thought of YMCA camp (Jim volunteered to be the aide) (!!), but when I added up the behaviors of kids who are Charlie's age, not to mention how over-stimulating it would be (the arts & crafts room......I also pointed out to Jim, he's not exactly an arts & crafts guy), I realized that this might create problems we don't need at this point. I do know of a camp run by the Dept of Developmental Disabilities but was warned away from it by another mother who said it's at a very slow pace. Charlie likes to be busy!

Thanks for saying what's been on my mind a lot as June has started........

Kristina

--------------------------

still soapvoxing, now @ autism.change.org

Thank you, Sally. Ann

apietrangelo — Fri, 05 Sep 2008 13:33:34 -0500

Thank you, Sally.

Ann Pietrangelo

My Website: AnnPietrangelo.com

HI

Sallybelle75 — Fri, 05 Sep 2008 11:37:39 -0500

You are brave and strong. I'm inspired by your optimism!

Sally Belle
http://thatscrazee.blogspot.com/

i'm usually pretty good...

kazari — Sun, 24 Aug 2008 20:31:32 -0500

but every so often I find a groove (um, rut) that feels very, very comfortable. I'm in the process of shaking myself out of one at the moment.

thanks for your post

I think I have a recipe for that...

Swim, Bike, Run!

Bleach226 — Mon, 04 Aug 2008 12:55:20 -0500

Congrats on finishing your triathlon!! I just found this post via my own tag of "triathlon" and I'm always so motivated by those that have paved the road before me. Thanks for a great post!

All Ya Gotta Do, Laurie...

debra roby — Wed, 08 Aug 2007 15:29:13 -0500

All ya gotta do, Laurie, is invite me out for a long crafty weekend! We can sit and admire your collection together! Then go have a latte and shop for your blank spots!

Eight new blogs?? Where do you find the time?

Debra
A Stitch In Time
Deb's Daily Distractions