Tuesday, March 13, 2012

She Said It Was "Vital"

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

Sweets is almost 3 years old now. She has been enrolled in state early intervention since just after she turned 1, and now she is aging out of that program. The next step is an IEP (individualized education program) with the school system.

In preparation for our first IEP meeting, Sweets has been tested for pretty much everything, even though our main concern with her has been her speech and language delay. She has been getting speech therapy twice per week since 18 months, but she used to also get physical therapy (for gross motor delay) and developmental therapy (for cognitive delay). We dropped the other therapies last year, mostly for financial reasons, but also because it seemed like she had improved so much in the other areas that she probably didn’t really need much more therapy there anyway. We felt like speech was her obvious issue, and we should focus on that. If therapy had continued to be free (DT) or cheap (PT), we probably would have just continued, but when the state completely changed the financial structure so that we would have to 100% self-pay for all therapies, we decided she probably didn’t really need all those therapies anymore anyway and we could just focus on speech.

The current round of evaluations has shown that not to be the case after all.

I was surprised that her scores in PT were at the 4th percentile – the same as they were at 13 months when we started early intervention. Once your kid can walk and get around pretty well, I guess you forget that there is more to gross motor than just walking. I was more surprised that her cognitive scores were also at the 4th percentile. But she can do puzzles now! And find hidden objects! Ironically, she scored higher in language ability, at 8th percentile, than she did in PT or cognitive, and that is the area we had been most concerned about!

It is obvious that she is gaining skills, not losing them, but it is harder to see whether she is actually “catching up” or not. To me, it feels like she is doing so many new things, and she is! But that’s not the same thing as catching up. It doesn’t mean that she no longer needs therapy. It took me by surprise to see that she is still at the same percentile as she was two years ago.

So many people have told me that “she’s probably just a ‘late bloomer’” and not to worry, which may have led to some additional complacency. People love to tell you about someone they know who didn’t say a word until they were X age and then suddenly started talking in complete sentences. I’m sure they are just trying to give comfort and reassurance that everything is okay, that your child is “normal”. But that can make you feel like it’s not that important to get therapy, at least not yet. Or that you are overreacting if you do get therapy so soon. Maybe you should just wait and see.

Others seemed to blame her delays on me:
“She doesn’t walk because you wear her too much.”
“You are too easy on her – if you just made her work harder she would do it.”
“She doesn’t talk because you taught her to sign.”
Basically, she doesn’t need therapy, she just needs me to parent differently. Gee, thanks.

It is an odd contrast to the “early intervention is so important” proclamation that you often hear in the disability community. But when your child doesn’t have any diagnosis, just an undiagnosed developmental delay, it is hard to know if that still applies to you. Doctors have tested Sweets for all sorts of diagnoses, but all of the tests have all come back negative, leaving me to perpetually wonder if she really IS “just a late bloomer” and would catch up in her own time. Or, if I have somehow contributed to her delays.

Sweets’ cognitive evaluation report says “it is important to consider that intellectual abilities are less stable and predictive at this young age.” Which means that just because her IQ is 73 now, doesn’t mean that is necessarily predictive for what it will be in the future. She could still “catch up”. The report goes on to say that “it is vital that [she] receive appropriate intervention to address her language and cognitive delays so that she can improve her skills and intellectual disability can be prevented.” Basically, if she gets therapy now, then it is possible that she will improve her cognitive abilities with respect to her age as she gets older. And if she doesn’t, it is possible that in the future she could be classified with “intellectual disability”, previously known as mental retardation. The psychologist is not equivocal in her recommendation – early intervention at this time is vital.

I feel guilty that I voluntarily stopped her other therapies, because it looks like she probably still needed them. We lost about 9 months of therapy there. We will find out this month whether the school system is going to provide these therapies to Sweets through her IEP or not. But even if the school does not provide them, we will be sure to get private therapy for her anyway. At this point, I want to give her all the early intervention that I can get her.


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(This list will be live and updated by afternoon March 13 with all the carnival links.)