Monday, August 5, 2013

The difficulty with having no diagnosis

I've found that I have become friends with a bunch of other families who also have kids with special needs. Some of these, as you would expect, are other families at the developmental day preschool that Sweets attends. Others are people that we've met in other contexts, but maybe we just felt drawn to them due to similar experiences with special needs issues.

In this crowd, there is a lot of talk about doctors and evaluations and IEP's and services. My family has had a pretty positive experience with the IEP team, and we feel like they have given us all of the services that they can for Sweets - even more than we expected. Other families do not necessarily feel the same though, even if they have the exact same IEP team as we do. They are fighting hard for services that are handed to us but denied to them, which I'm sure is frustrating. They want to know what did we do in the meeting that they didn't do - why are we getting the services but not them?

When we first got all of these services from the IEP, we thought there are a few ways we could view this. 1) They think she is a lot worse off than we anticipated and really needs way more services, 2) She is a "good investment" for early intervention, and if they throw a bunch of services at her now then maybe she will get to a point where she doesn't need them anymore soon, or 3) I came in with my big binder and my evals and ready to argue, and they decided it wasn't worth messing with me. Option two feels nicest for Sweets, so we like to think it's that (and maybe a bit of number three as well). Honestly though, I have no idea why it has been so easy for us to get services and it's not that way for others.

Sweets' difficulties are not necessarily as obvious to others as some kids'. Sweets isn't really severely affected in any one area, but is somewhat affected globally. She has gross motor issues, and wears bilateral orthotics, but she can walk and run and her new orthotics are now completely hidden inside her shoes. She can now say all age-appropriate sounds in single word utterances, though she still has trouble when stringing multiple words together. Her language is delayed, but she is now able to carry on a conversation, especially with adult prompting. Her social play has improved a lot, and she does engage in play with other kids now. She is behind on academic skills, but it isn't apparent to others who are watching her in a play situation. We still don't even have a diagnosis other than "developmental delay", though we've been tested and screened for all sorts of things through the years.

So to our friends who are "in the system" with us, Sweets appears pretty "typical" compared to their kids who have "real" diagnoses like cerebral palsy, autism, apraxia, hemiplegia, brain lesions, etc. When we share test scores (in the context of eligibility for services), they even question the validity of her scores because they feel like she should test higher compared with their kids. The fact that she is getting certain services that they aren't feels unfair to them. I know that they really just want more for their own kids, but when they express this to us it feels like they think Sweets doesn't "deserve" all of her services.

In a way it is nice that they think Sweets just seems "typical", because it shows that she is really doing well, though it is also frustrating to have her struggle minimized. I know she isn't profoundly affected like some kids we know, and it's not like I wish for her to be more severely affected, but sometimes I wish we at least had a diagnosis just to be legitimized in the special needs community.

Every time Sweets improves, some people seem to take it as proof that there was never any problem in the first place - that she's "just a late bloomer". I think that they are just trying to be positive, but to me it feels like they are saying that we are over-reacting or something, and she doesn't need the therapies and IEPs and whatnot, only a bit of time. When your kid isn't talking yet, everyone likes to tell you "well, you know Einstein didn't talk 'til he was 6 so I'm sure it will be fine". And maybe it will be fine, and maybe it will always be a struggle, but without a diagnosis, we don't have a prognosis, so there's no way to know, and that is frustrating.

It reminds me of when I was about 5 months pregnant, and people couldn't quite tell if I was pregnant, or just getting fat. People look at the lady who is 9 months pregnant, and they know what the deal is, but they look at you at 5 months and you want to wear your maternity clothes just to be like - hey, I really am pregnant here, there is a reason I look like this!

No comments:

Post a Comment