Thursday, March 5, 2009

Smiles and Trials

In the short time we have been on our journey of being parents of a child with special needs, I have learned about the highs and lows of intervention services. Much to our disappointment our county offered us a very limited amount of service. In my personal opinion, this is disgraceful given that research has indicated the impact early intervention can have on the later functioning of individuals with Down syndrome. But I guess there are other more important areas for our county to spend money on than my little Quinny. This is a difficult realization to a parent.

Thankfully we have met wonderful individuals who could advise us and we were able to do some research and find out that we could go private for the majority of our services. So you do the comparison:

What the county wanted to give us: Once a month early educational service and once a month physical therapy (which I had to fight for by appearing to be a "difficult" and demanding mother).

What we get now: Once a week physical therapy, once a week speech therapy, once a week occupational therapy, and once a month early education service.

So what do you think, which one is better?

Luckily we found that our insurance would cover so many sessions and then a State program called Katie Beckett will pick up the rest.

Easy, right? Well, not exactly...

The State program is slow in approving things, like a walker for Quinn. Quinn's physical therapist really wants her to have one at home. Quinn has been doing an awesome job using the walker in therapy and it will help her learn to walk, but the State doesn't want to pay yet. They want to wait until she is MORE delayed and then maybe, yes maybe, they might pay. Again, who cares what the research suggests and that this may be of great benefit to my daughter. Going back again to the sad realization as a parent.

Well that is the trials part, but now the smiles...Quinn's physical therapist is a BEAUTIFUL person and she has taken it upon herself to help find Quinn a walker. She contacted families that she knew had one that they were no longer using, and it looks like we will be able to borrow one from a family she knows. Also another smile...a BEAUTIFUL family that we don't know who are helping us out because they know the struggle.

The things you learn having a child with the disability...

Sometimes the priorities of others unfortunately do not include your child. Like sometimes people are told to terminate a pregnancy because of a disability. And sometimes they don't want to give you services that will help your child long-term. Or sometimes you hear an insensitive joke or lyrics to a song. You just learn that there is still stigma, and although we have come a long way - we have some distance left to go.

You have to fight for services. This may make you seem as a difficult pain in the hind end to the all-knowing professionals. In an interesting twist of fate, however, I am one such professional (a psychologist) and I have become humbled by this experience. I am embarrassed to admit that there was so MUCH that I didn't realize until Quinn came to my life. This is again an example of Quinn's wisdom - to put me in my place. Anyway, my thought about all of this is that you have to constantly be learning, researching, and advocating to help your child. What are families who just can't do this left with? Hopefully they are not just left with the crumbs.

And - this is the light at the end of the tunnel - sometimes you meet the most wonderful people who go above and beyond what they need to do to help you. It is from these people that you do see that somebody values your child and you get some hope. You get a feeling that things may be ok after all. God bless Quinn's physical therapist - we were so blessed to get to know Sarah, a truly beautiful woman.


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