Fighting For Services

We have been fighting to get Joel speech therapy for over a year. In March I had a meeting with Joel's teachers [from his Birth-3 program] to discuss our Individualized Family Service Plan (IFSP). They finally agreed that yes, Joel does need speech therapy BUT they didn't want to start it since we were moving in April. I was extremely frustrated. The frustration only grew once we moved to Ohio and I was told that we would have to basically start all over again. Our IFSP and list of services he was receiving in Washington meant nothing to the state of Ohio. We had to wait months for evaluations and meetings. During the waiting we started to notice regression in Joel's development. I tried everything I could at home to work with him but I wasn't getting anywhere.

He was evaluated for the Help Me Grow program in Ohio, but a woman that spent 15 minutes with him determined he wasn't eligible for their class room program like he was attending in Washington. He would, however, be able to attend a county preschool for delays when he turns three. It made no sense to me.

Meanwhile, our new insurance company was telling me they wouldn't cover speech therapy services because his "speech delay wasn't the result from an injury or illness." Basically if he got sick one day and suddenly lost his speech or if he hit his head and lost his speech they would cover it. I tried to explain that yes, actually it is the result from an illness called tuberous sclerosis.. But in the end I was told I could write a letter to appeal it if I wasn't satisfied with their response.
 

At that point I was crying every night to my husband. Our son was regressing in his development (all the progress we had made before we moved from WA!!) and all the services needed to help, weren't willing to help us! I didn't know what else to do. We decided the best thing to do at this point is to find a private speech therapist. It's expensive, but it honestly has been worth every dollar spent. His speech is slowly improving which is a huge blessing!
 

Two months ago I looked into learning centers for him to attend a few half days a week [so I could go back to school and also] with the hopes that being around other children would continue to improve his speech and development. But oh my goodness.. the best one I found was $599 a month! SERIOUSLY. That price was for only three half days a week, and didn't include lunch! There's no way we could ever afford that. Not to mention.. if we did send him there, they are not equipped to focus on the sensory and developmental issues Joel currently has.

To say I have been overwhelmed and stressed out would be an understatement. I do my best to work with Joel at home.. I have tried taking him to story times.. I have even tried taking Joel to a parent/child art and music class.. but it's always too much for him and he just cries the whole time. At the parent/child art and music class everyone stared at me the whole time while my child cried, hit me, and threw himself all over the place. My heart broke for him.. especially because no one talked to us the entire time we were in the class. They just stared. I'm sure to them it looked as though my child was just being a brat since they don't know us and don't know what we've been going through. I had to fight back my own tears on the way to our car afterwards.

Jeremy and I both thought moving here to Ohio would be the best thing for Joel, but so far it hasn't been. If we had known all the problems we would have here, we would have stayed in WA until Joel was three years old. How were we suppose to know though? We thought everything would just transfer over, no problem.

At this point I don't know what else to do. One thing is for sure though, I refuse to give up until he gets the help he needs!