Saturday, February 16, 2013

Trust Issues

I have been off the writing grid since early January. I have popped in from time to time to check comments and reply, but my heart hasn't been into writing.  I have been feeling pretty low and not really sure what to write. So, here it goes:

Shortly after my last post, we decided to take Matt out of  his Early Intervention charter preschool permanently. This was not a rash decision and everyone who initially questioned our decision now agrees we did the right thing. I know we did the right thing.

We should have taken him out much earlier than we did, instead we trusted those who should have had his best interests at heart. They know why we removed him and they couldn't even argue our decision. My biggest regret was not approaching administration when the situations arose. Although given their attitude and suggestions on how to handle this situation, I know nothing would have changed and I would have been a nervous wreck leaving him at that school every day.

I have been working with him at home on activities that he was doing in school and he is now doing things that even they couldn't get him to do--like propped sitting and taking steps in a gait trainer. He can sleep as late as he likes since he has been having trouble staying asleep at night,he has an Early Intervention therapists coming to our home to work with him, he has had less Salaam spasms and seizures, and is generally a much happier little man.

Just when things are finally settling down and I have gotten him into a routine, it is now time for us to make the transition from an IFSP to an IEP and for him to start attending preschool at a one of our local public schools. And I'm a nervous wreck.

I don't trust anyone with Matt now. I don't know how I am going to leave him with anyone-- he can't tell me if someone is mean to him, if someone hurts him, or if someone neglects him. I was involved with the other school. I showed up at unexpected times to check in on him and to pick him up for doctor's appointments. If he can be treated poorly when I was doing all of that, it can happen anywhere.

Thanks to our pitiful health insurance, the only way he can receive speech therapy and any help with communication technology training is through the public school system. If money and insurance weren't a factor, I would rather have him home with me, but it's out of my hands at this point in time.

If any of you have non-verbal children, have you had any situations arise in school where your child wasn't treated properly? How did you trust others to care for your non-verbal child?


  1. Wow, so sorry about all you've gone through. This must be so hard. It's got to be frustrating when you have to base your decisions on finances and insurance. We live in a very special-needs friendly state. My son is homeschooled but still gets private therapy funded entirely by the state. If you ever get really, really desperate, would relocation be an option? Alana at

    1. I wish we had better services here. We had Medicaid as a secondary insurance until December when it was decided that my husband's teaching income (our sole source of support for almost 3 years)is too much for us to qualify anymore. That's what helped us pay for his speech therapy and hearing aids since our insurance won't do anything to help. I wish I knew a better way to do all of this because I'm worried about sending him to school again.

  2. I feel you on not wanting to leave him with anyone. We were supposed to start our son in school but just couldn't do it yet. He went through the IEP process but we didn't really like the option we were given. So we are trying homeschooling. I ordered from and to see which one works best for him. Have you looked into the medicaid waiver? It is a federal waiver that makes it so children with special needs are covered regardless of parents income. Google HCSB waiver or DDS waiver if you haven't looked into it yet. Hopefully it will help.