We’ve been having one of those times around here. Things are going well, and Angel is doing well, but I’m getting so frustrated because I hear “you don’t have a diagnosis”. We do have a partial diagnosis of speech and language delay and fine motor skills delay, but it can be very difficult to get support services when you don’t have a concrete diagnosis. If Angel had autism, we would be have a much easier time getting support services. But since we don’t have that, we have to continually push for things.
Let me clarify that I don’t think life would be easier if she had autism. What I’m saying is that for kids who have autism, there are supports and services available. I know the wait list for services can be long, but at least there is something. We have been working with someone about Angel’s aggressive behaviour, and she was asking us questions about how Angel acts and what she does, and she told us that she didn’t have any community services to refer us to because Angel doesn’t fit in any of the categories. She also noted as I did when we first started trying to figure out what was going on that a lot of Angel’s behaviours fall into what you would expect from a child with autism. So far, the only thing we know for sure is that she doesn’t have autism.
We had to fight to get Angel an IEP. Part of that happened because our principal changed and the new one didn’t know what the old one had promised. We let them know before she started school that she was going to need help. In senior kindergarten, we asked for an IPRC meeting so that Angel could be recognized. She’s in grade 2 and still not recognized as having special needs. Never mind the fact that she gets speech and OT at school and that she is working at a kindergarten level in math, she still doesn’t meet the qualifications.
I just get so tired of hearing that! An occupational therapist once told me that Angel presented as “normal”, meaning there wasn’t anything in her outward appearance or actions that would make you think there was something different about her. Sometimes, I wonder if this is why we have trouble getting people to recognize that she does need help. Earlier, I said that we have a partial diagnosis for Angel. I say that because I don’t think that speech and fine motor delays cover everything. I know that there is something else going on, but what it is exactly is what I don’t know. I know that she has sensory issues, I know that she has trouble understanding concepts. I also know that she is a bright little girl who is very curious and loves experiments. She is very loving and enjoys playing with her big sister. She’s a great kid. She’s becoming such a neat little person and I love getting to see her point of view on the world. So, we keep moving on, muddling through, and climbing the hurdles that they put in our way. We’ll find out what is going on someday, and in the meantime, we’ll keep working on improving the areas where she is struggling–label or not.