Every 6 months or so, I get another reminder--as if daily living isn't enough of one.
Your children are delayed.
Your children are not normal.
In essence, every 6 months I get another "your children suck and can't do anything" letter from whichever agency is in charge of picking out all of their struggles at the time.
And when you have twins, you get the fun times two.
Sigh.
We got the OT evaluations today. Neither boy is particularly happy with their OTs, so you can imagine how them not wanting to work with these women translated on paper. Plus, the boys have only been in therapy since late September, which meant they have had less than three months to work on the goals established for them in June.
I read through these forms and got increasingly more angry. I was misquoted and saw my words warped into unintended meaning. Along with that, there were flat out inaccuracies on which skills the therapists said the boys can't do, even though we KNOW they can do those skills. I think I shook my head "no" to at least one thing in pretty much every section.
Again, I feel like I have to be very careful when I answer questions the therapists ask. Like I have to watch everything that happens while we are there. Like it isn't safe to let Is.aac take them because I can't know what is going on while the boys are there.
But more than that, it is just inherently WRONG to willingly take my children to a place where people are payed pick out every single tiny weakness they can find in my kids to justify the need for therapy.
It hurts my heart to continually have everyone shove it in my face (in the guise of "helping") that my children are different.
Ugh. These feelings and hurts...every time I think I have a handle on all of this, something happens to knock me back down. Constantly picking yourself up from the gutter gets old.
Oh man...this does not sound good at all.
ReplyDeleteOne thing to remember, kids ALWAYS act differently at home then they do somewhere else. Be it better behaved or more reserved, they are different.
It sounds like you haven't been happy with this place for a while though. Being in the field, I'm sure you've been parents come in with huge binders of documentation, right? Sounds like you may have to start taking notes during your conversations with these people too.
That sounds ridiculously frustrating and exhausting dealing with these therapists
ReplyDelete(((((Hugs))))) Your boys are rock stars. You know it, you let them know it, and anyone who implies or makes you feel otherwise...
ReplyDeletecan SUCK IT.
You've found your goal. You need to change the system. You know what's wrong and you know there will be SOOOO many moms behind you with kids in the system. Pave the way for them. Change the way letters are written and the way "help" is given.
ReplyDeleteTurn it into a positive thing Stace.
I'm serious. Write letters and have meetings with people. Explain how this feels. Explain how turning a negative into a positive with just words can change everything. Work with the therapists and their bosses and the their bosses to make it a positive experience for kids who are trying. who struggle. who are sick of being pushed and evaluated. Educate them.
That's what you do. you are a teacher. teach them the right way.
Just an idea.
Urgh. Assessments suck. SUCK. Even if they are meant to be for the greater good they are so so hard. I think all of us moms feel it. Hugs to you.
ReplyDeleteI am so sorry. My favorite doctors and therapists so far have been the ones who 1st addressed D and not just my husband and I and 2nd focused (or at least addressed) the positives while talking about the negatives. I know the focus is about setting goals and addressing delays, but a little kudos for things the kids do well or have made good improvements on goes a long way. If I could I'd change everyone on our "team" to those who play my way. Unfortunately it's not always possible with evil insurance and I hear it gets even more difficult once you hit the school system.
ReplyDeleteWe had a horrible OT evaluation with a private OT a few months ago - D was completely uncooperative and didn't do almost anything she asked of him. I was expecting a crappy write up and very weak "results", but I was not expecting the sentance that said something like "D was actively engaged in the evaluation" and nearly cried. Was she at the same evaluation? We gave it a few weeks anyway to see if it would get better, but I'm 99% sure she's no longer going to be a part of D's team after this week.
I hope you are able to find a different solution soon and that the right people for the boys comes along and works.