Sunday, June 12, 2011

I hate being the squeaky wheel!

I hate to have to fight for what Dylan needs and deserves.  I HATE confrontation.  I usually end up getting all red and flustered.  I am feeling this way because last week Dylan had his six month evaluation at California Children's Services where he receives additional and much needed therapy on top of his therapy provided by the Regional Center.  The great thing about CCS is that they provide therapy services and equipment for the child until age 21, unlike Regional Center that ends at age 3. The eval was conducted by a Pediatrician, Social Worker and an OT.  
It started off by the doc saying "so he is crawling and toddling around furniture now, right?"  I hate when this happens because instead of me going over all that Dylan has accomplished I feel like all I am saying is no, no, no.  We talked for a few more minutes and then he did his physical exam and told me that Dylan barely qualifies for therapy services because he does not have high tone but low tone and to not be surprised if he gets dropped next year!  I was shocked and didn't know what to say except "can't you see that he needs OT and PT desperately?"  Which he replied "yes, but hypotonia is not a covered diagnosis."  All I could say was "are you kidding me!?"  I guess the state of California totally disregards a rare chromosomal disorder that causes multiple physical and mental delays because I was also told that they didn't know how he even got approved in the first place.

By now I was already getting flushed and upset so I decided to see what I could get while he has CCS.  I told them I wanted to get Dylan a gait trainer, a much needed piece of equipment that will help him learn how to walk.  I was told that CCS will only approve a gait trainer if Dylan is taking "purposeful steps," but they could get me a wheelchair.  A WHEELCHAIR!!!  NO! Dylan does not need a wheelchair he NEEDS A GAIT TRAINER!  (Even writing this now I can feel the steam rising from my head.)  Why, oh why must I fight for what Dylan needs? Is this how it is always going to be?  I hate it!  Now don't get me wrong, I have not given up and soon I will be posting a picture of Dylan in his gait trainer.  

Now would you not approve a gait trainer for this beautiful little boy who is standing so strong, but instead like to see him in a wheelchair?
Yeah, I didn't think so.

To end this post on a happy note here are some pics and a video from this weekend.  It's not the best video because the camera's battery was low but Dylan loved the water slide!

With Daddy

Luke - 7 months old

Not the best pic but you can still see Dylan's very happy face going down the slide with Hailey


  1. I am sure the picture with Dylan and his gait trainer will be posted soon.
    I'm sorry you had to fight this fight. It is just not fair, it seems like CCS is targeted towards different types of issues, which is totally unfair - you either need therapy or you don't, it shouldn't matter the underlying cause.
    Good luck, you are one strong mama.
    You have a beautiful family :)

  2. This post makes me so angry... wether Dylan has Low or High muscle tone should not make a difference. If he or any one has a condition that makes it harder for him to do the normal things then I think they should be entitled to therapy. Good on you for fighting this.. I cant wait to see Dylan in his gait trainer... Because I know he will get it xx

  3. Kristy, I can feel your pain and am SO, SO SORRY that you need to fight at all for Dylan's needs. I just had a discussion with my mother yesterday, because we were denied for in-home nursing. My mother made a comment that I am getting an education, and I said-- "Yea, but not the kind I want." She said that my experience could land me another career after I retire, helping people nevigate the system. I replied that all it has made me want to do is head to Washington to fight for children's rights. There are some things that medically-needy children (and their parents) should not have to fight for~ medical services, therapies, and needed equipment. My insurance won't cover an adapted carseat...can you believe that?? Reason? They only need to cover it for transportation to and from the house. By that reasoning, they do not see any reason for her to ever leave our home, because, obviously, all of her doctors, therapists and specialists will come to us...STUPID! I hope that they wake up and realize that sometimes, it doesn't matter what the damn papers say; it is just a matter of doing what is right! (I am getting steamy over here, too). Keep us posted on the developments; in the meantime, give Dylan a big hug from me and Kaylee! xo

  4. Ok. Honestly - Kristy... I'm so glad I wrote my blog post before I read this - because I got so angry I would not have been able to finish my blog! Keep fighting. Don't give up. We will support you. You are a great Mom - and that's why he will get the gait trainer.

  5. It has always made me mad, how kids with special needs don't get what they need without a fight. So far I have gotten Early Intervention without a fight, but now that Adi is aging out, I am getting a taste of what's to come, and I don't like it.

  6. I'm a little late reading this post, so I don't know if you're still steamed about this, but I'm plenty mad for you. I had hot angry tears in my eye as I read what that insensitive jerk was saying to you. Dylan might get dropped from services?!! Because Why? His low tone makes him TOO needy? That doesn't even make sense. And they will provide a wheelchair but not a gait trainer?! I really don't understand the logic behind that. Seriously, they don't even know how he got approved?!

    I've never been someone who is comfortable with confrontation either, but I'm understanding that I need to learn how to be... how to be more confrontational in a confident and effective way. Let's try to remember that the process will make us even better mothers. Our sons will benefit not only from the services and equipment we can get for them but also from the increased strength and confidence we will have.

  7. I am very proud of you for standing up for Dylan's rights. You are his avacate and you know what's best. Keep bugging them until they realize you are not going away.


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