The other day I went to pick Eric up from school and the teacher wanted to have a little chat with me about Eric. That day, Eric was having a rough day. The teacher said he pinched a few different kids. That the kids were starting to not want to be around Eric. This makes my heart hurt. My eyes started watering, I could feel my face get really hot. Hearing that the kids don't want to play with Eric just kills me. He already has a negative having a disability, it will get worse if we don't get in home behavior therapy. On a daily basis, I battle with Eric and his pinching, pulling hair, grabbing faces as well as biting. He just started doing these things again, after not doing them for quite some time. I work with him a lot on these things and nothing seems to ever work. It seems like he does these things when he is tired, frustrated or just wants attention, because after all, negative attention, is still attention. I believe a lot of his negative behavior is because he cannot talk yet. He is so smart, yet he can't say what he feels, or wants, or needs. When we are in a place where many kids are, I always have to be one step behind him because you just never know what he will do! It makes me so sad that kids don't want to be near him but if I were the kid he pinched...I wouldn't wanna be around him either!
I am frustrated because back in Westlake Village, Eric was a patient of a place they call "The Regional Center". Most areas have a Regional Center. This is another way for Eric to receive services, like behavior therapy. They offer Respite care. Eric qualifies for this as well. Respite is where the state will pay up to a certain amount of hours for you to have help so that us parents, can have a break. Since Eric qualifies for Regional Center, he should be getting these services. When we decided to move we called our rep at the Regional Center...she was going to start the transfer process because it could take up to 6 months to get his files transferred. We had just started behavior therapy just before we moved. The problem is you have to call EVERY week to make sure they are doing their jobs!! Seriously, California State Run funding sux! After being here for 3 months...and calling the Regional center almost every week...they still have no clue who Eric is at the Local Regional Center here in Tahoe. Frustrating! Immediately, I emailed our old rep...I emailed because she was horrible at everything except email. She emailed me right away saying that she is so sorry and that she has been in and out of the office and his paperwork is still in Los Angeles. WHAT?? Seriously? Supposedly, his paperwork is in route, still. In the meantime, I have this child who cannot talk and qualifies for services, but because of how most state employees work, he is getting lost in the shuffle. Pretty fair?! I know, I know, life is not fair. Well, I guess I will keep calling because you know what they say "the squeaky wheel gets the oil." We will keep fighting for what's right!
Til next time,
Shauna
Shauna - I know you don't like to complain, but it is time to file an official complaint. You should file it with North LA and the state level Dept of Developmental Services. Eric is entitled to timely handling and there should be NO delay. 6 months is BS. If you need addresses or names, let me know. Mindy newhouse
ReplyDeleteMindy, thanks for the help! Would love the name of some people. I know I should have complained a long time ago but things have been so crazy. I will get on it though! No one else will fight for Eric and what's right! PS We are so lucky to have you and Communication Matters in our life! Tell everyone we say hi! xoxo
ReplyDeleteDo they have the PECS program or even simple signs to help him communicate?!?! Hearing his story makes me want to head back to work!! I wish I was there to help!! It is sad that there are TOO few teachers and many are tired and just don't put 100% into the kids because they have all the paperwork, rules, and regulations swimming in their heads! I look back when I taught and it was draining and difficult but that ONE success makes it worth it!!! You are doing what you can and we are all here ready to listen when you need to let it all out!!!
ReplyDeleteAnn, they use pecs as well as sign with him. You are too sweet! We also pay for outside speech for him. The talking is coming but just not here yet. Soon....I am hoping.
ReplyDeleteHi, Shauna. I can see that, like me, you are a superhero for your son! I agree with the above, PECS signs can really help. We use an iPad.
ReplyDeleteAs if it's not hard enough dealing with our kids' challenges, you have to deal with managing all the therapists. You are the CEO of your child's life!
Might I just say, though, the fact that Eric can pinch indicates that he has a pincer grasp. That's a Good Thing. :) Sorry, a little special needs humor there.