I had originally planned to write this post about my son's annual IEP meeting.
I hate that I have to feel like I need to steel myself to fight for his services at school and that we are not really meeting with his school "team" but that we (his parents) are the only ones really advocating for him. Here, in our state, the IEP (Individualized Educational Plan) deals only with the services he will receive at school for the upcoming school year. That means first grade this fall. Yikes! Time goes fast. He only receives speech and occupational therapy and I figured it would not be that big of a deal to keep services going but again the therapists proved us wrong. In a nutshell because he was doing well and meeting goals they wanted to lower the number of hours for his services as per school guidelines. That may not sound so bad but to us it is totally counter intuitive. Our position - shouldn't he at least maintain at the current level so that he doesn't fall behind as each school year he faces more expectations and school work becomes more challenging? Each year is presumably a little more difficult than the current year so our feeling was that the therapies he is receiving should match that level of difficulty. Eventually, we were able to persuade the therapists to at least maintain his current therapy level.
We thought things were on track once we finished with my son's IEP meeting. Not so. Some time afterwards, I don't remember when now but not long after we received a call from our support coordinator supervisor. The purpose of the call was to inform me that the state agency was starting the process to terminate all services (therapies) for my son. I also learned that we would be receiving a letter to inform us of this officially within the next week. To say that the phone call threw me for a loop is putting it mildly.
To back track a little, at the end of last year, I was informed by the same person that the agency was going through a redetermination process for my son because that is what the agency does when a child turns 6. I was told that there really was not anything to worry about and the support coordinator supervisor agreed with me that my son should not have his services terminated and that there should not be anything to worry about. So. Wrong. Note to self, take anything the state agents say with a grain of salt and get it in writing.
After hanging up with the supervisor, I just put my head down on the table and cried. I was so upset that this was happening and that we had received no warning! I had even followed up with the supervisor at the end of January to ask what was going on with the redetermination process but was told there was no update. After trying to calm myself down, I called my husband and informed him of the phone call and cried some more. But I knew I could not spend the entire day crying (which I did anyway) but I also had to try and get as much guidance and assistance as possibly. I started calling different non-profits that I was aware of and explaining what was going on and just trying to get someone to help me. I also reached out to a friend of mine who is an attorney and he totally came through and was able to connect me with an attorney who works with special needs and situations exactly like the one we were facing. The special needs attorney let us know even before we spoke to her that we had 35 days to appeal the termination of services. I was very thankful because we were not aware of this. In the meantime, my husband was able to connect with a special needs advocate because he spoke to a co-worker whose husband happened to work in a non-profit for special needs and knew advocates. We definitely felt grateful for the timing of everything and the advocate is still working with us today. The day was a total blur but by the end of it I felt much better because we had already started the process to build up a team to help us fight the termination of services. All we had to do was wait to receive the letter and that would let us know what the state agencies position was and why they were terminating services. We had to wait longer than we expected.
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