I haven't been able to sleep in the last couple of days (or nights, actually) and have had that nervous feeling in my stomach as well. Stressed. Worried. Anxious. You name it, that's what I was feeling. And all because a nurse from the health department was coming to ask me a few questions about Charlotta.
About four years ago I had applied for a government program that provides funding for special needs kids to receive certain therapies such as speech therapy (which costs like $150/hour). Anyhow, in order to qualify for the funding, the child has to meet certain requirements and be dependent on an adult for basic needs such as dressing, washing, eating. A nurse comes out for a home visit to assess the child. Well, four years ago a nurse came out to assess Charlotta but we ended up being declined for the services. She was too independent, they said.
I was so hurt and shocked and disappointed that we were declined. I was mad, too. Not only did I have to justify Charlotta's needs to a person who didn't even know her, but they had no right to decline her because she truly did need help with all of those things. I was too devastated to even appeal the decision.
Fast forward four years. Last December we had an appointment with a wonderful doctor of Charlotta's who is a developmental pediatrician. He mentioned something in passing about the program I described above, and I said to him that we had applied but were declined. He was very surprised by that and encouraged me to apply again. Then he left our examine room for a few minutes to get a copy of the application form and he filled in all of the parts that a doctor had to fill in. I mailed in the form in January --- with a knot in my stomach.
Last week, I received a call from the department that manages the program. The nurse on the phone asked a few questions. Her: "Has anything changed since last time you applied?" Me: "No, but that's the point. My daughter is almost 11 years old and still struggles with washing herself and getting dressed by herself."
So, a home visit was scheduled for this afternoon. I preparation for this, we put her to bed late last night and woke her up early this morning. I'm also ashamed to admit that I didn't give her her anti-seizure medication this morning. All this so that she would not be at her best.
I picked up Charlotta from school early, and dreaded every minute until the doorbell rang. The lady who came was nice enough, and went through the extensive questionnaire about Charlotta's abilities in all the areas of personal care. About an hour later, she said that the committee would meet to review the assessments in a few weeks, but from what I had told her and what she observed, she thought Charlotta would be accepted into the program. Hallelujah!
I was relieved, but also angry at myself that I had to go to such lengths to bring out the worst in Charlotta. She's such a great kid, but just needs some extra help with things. As the parent of a special needs child, you spend most of the time celebrating the small accomplishments and milestones that they achieve. Then, in order to satisfy a government bureaucrat, you need to focus on all the things they can't do and how much different they are from typical kids.
Phew, I'm glad that's over with. Now I need a glass of wine...