Sunday, November 8, 2009

Defeated

Autism, you win this weekend. I am beat down, wore down, exhausted & brokenhearted.

I am in desperate need of a break from it all. I don't know how, when or where I can get one. Actually, ASD has been winning the past few weeks. It has gone from bad to worse. It is so sad to be praying she is getting sick & that would explain why she has been so out of sync, stimming & just "not here".

I am scared I am losing her. I know that I have said this before. She has always "come back" to her degree, but it terrifies me each & every time. I keep questioning myself: Is this it?

We also got a rough report from school on her behavior. Therapy evals are in for our private PT, OT. Very little gains made. Still stuck in the same age month we have been in forever. I am getting the feeling that this is as good as it gets. She is 6 1/2. We are still stuck around the 36 months mark motorically (just made up my own word). Am I wasting my time & money going to therapy every week?

I know so many of you would trade places with me in a heartbeat to even get here.

Just whining.

7 comments:

Corrie Howe said...

No matter what other parents and children are suffering or not suffering, it is still very real and hard for you. Don't feel bad. Don't compare yourself to others. It is okay to be you and your daughter to be her.

Autism and family said...

Ya know - it's been rough around here, too. I really think that the time change has A LOT to do with it. I think many of our kids are sensitive to that. It has always been a difficult time of year for us. Autism has been kicking my ass for the last month. I think I see a light at the end of the tunnel though. Just hoping it's not a train!! :-)

Brenda said...

Meghan's Mom,
((Hugs)). I know what you mean. We're having a rough couple of weeks, too. For us, it wasn't just one thing, it was a lot of things. Halloween, a cold, reflux, time change. That time change, arrgh!

One thing we don't do on a regular basis is get formal evaluations. We do OT and our form of PT (not formal at all). But we really only look at what we need to work on next rather than figuring out where he is compared to peers. I already know he's well, well delayed. I don't need to be depressed by stats. Just sayin'. Then again, I think we're well off the "regular" path of school, evals, etc., since we haven't started school.

Thanks so much for visiting my blog. It's great to find someone with so much in common. Jack was first diagnosed at 8 months with spastic cp, but that has been changed to hypotonia and very mild ataxic (really bad depth perception and balance, no shakiness).

I look forward to talking with you again. ((Hugs)) and try to get some time for yourself. I laugh as I say this, but it really will help. A manicure? A bubble bath? or even *gasp* a massage?

Brenda said...

Oh and P.S. Not whining. You have every right to be overwhelmed.

therextras said...

Blog support is wonderful - I could read it all day!

So true, too, what everyone has already said.

Maybe it is time for a change with the therapies-? Special Olympics instead of PT. Swimming instead of OT. Something like that...

(I.hate.spammers.too.)

Barbara

pixiemama said...

I'm sorry - and I so know how you feel. I feel like giving up on all the PT and OT for the boys - I can see almost no progress and the testing results are biased in favor of whoever is paying or receiving. The school evals rank them much higher than the private PT/OTs.

Be OK.
love.

Laura Gilmour said...

My thoughts are with you. You have a beautiful and bright little girl, but children on the spectrum can be challenging. I know because I was one. The biggest struggle my family and I faced was overcoming my tantrums/emotional outbursts. I am now studying psychology in university with plans for graduate school, but I still struggle socially. Nobody can predict what the future will bring for a child with high functioning autism or Asperger's (I recently read an article on adult outcomes for one of my psyc projects that said exactly this, however high intellect like MM has is a positive sign).

My advice would be to continue with the therapies, but also take the time to enjoy her as is. Find things you can both enjoy while she is in a stimming mood (e.g. go somwehere with swings and swing with her, swings are a good sensory outlet). If is also fun to share a child with autism's special interests with them (e.g. read with her on topics of interest or surf the net together on a kid-friendly search engine).

As far as friends and social contacts, MM will need to find people throughout her life who share in her interests and enjoy her company, but respect her high need for time in her own world. I have found a few special people like that and I am very grateful for them.