Wednesday, July 2, 2014

A Peek at a Therapy Visit

Being in the education world prepared me a little for what was to come with having a child with a disability.  The bigger shock was becoming a MOTHER to a child with a disability.  There is nothing that can prepare you for that.  Truth is, lots of mommies have kids with challenges of all sorts, and it's never okay to compare. Within two weeks of Miles being born, we were contacted by the local school district to set up an IFSP (Individual Family Service Plan), similar to an IEP (Individualized Education Plan).  (The hospital contacts the districts immediately, as I'm sure some parents don't even think or want to do that right away.) I in no way wanted to be talking about my child to a team of strangers who were about to tell me what to do with my child and how to help him.  Of course they have the best intentions and that's what's supposed to happen, but I wasn't ready to dive in to this special ed pool personally, because I didn't think I'd ever come up for a breath.  Again, I was used to sitting on the other side of the table at school, I never thought I'd be on THIS side. But I have a whole new level of understanding for those parents I'll be with in just a few months.

An evaluation was done and completed within 6 weeks for Miles, where a team organized goals and objectives for him in regards to speech, physical therapy, and occupational therapy.  Once a week his birth to three teacher comes and works with him and helps give us ideas.  About once a month speech and physical therapy stop in, but that's mostly because those services aren't needed as frequently right now.  I knew what the district provided was going to be minimal, because,'s free. And it's all done through the district and state. I knew damn well we'd need more.  I hit the ground running, and Ryan willingly let me channel my craziness and figure out more services. Our insurance covers a certain amount of visits within a one year period, so bet your bottom dollar I'll be maxing those out.

Right away I googled children's therapy near us, and found a children's therapy center that specializes in children needing speech, OT, and PT. (Children's Therapy Center in Apple Valley) Thus far, we've only done PT, but will add on speech and OT as soon as it's needed.  We'll be living at that place weekly.  That's one of the only places I go into where I feel like an equal.  All of us moms love our kids, challenges and all, and we're all treading water together.  No second looks, glances of pity, or gazes of wonderment...thinking, "What do they have wrong?"  I know people are starting to wonder, but for now, they just say how adorable he is.  (and he is!)The pictures below are of a therapy visit Miles had in early June.  We've started to take pictures, and now video so we can practice things at home with him.  Daddy just took him for the first time yesterday and was impressed at the therapy being provided.

We've been told by many doctors that Miles has mild hypotonia. (the amount of tension or resistance to stretch in a muscle) When you pick him up, he's a little floppy, or his appendages hang a bit more.  A typical child will flex their muscles and naturally pick their appendages up. However, he's been VERY motor driven and active since birth, pleasantly surprising even the PT the day after he was born in the hospital.  Hypotonia does not mean strength, it's how his muscles contract.  His strength will over come a lot of his muscle tone, but it'll make for crawling and walking a little later.  Low muscle tone can affect SO much in a child with DS. Everything from eating/feeding (mouth) to digestion/bowel issues. Luckily, we haven't had any issues yet with those.

In the fall, his birth to three teacher, speech pathologists, occupational therapist, and physical therapists appointed from the district will go to Miles' daycare and meet with him weekly.  Speech and PT and OT won't come as frequently at first, but the pace will pick up as he starts doing/needing more. Luckily Miles' new in home daycare provider is totally team player and willing to let these people into her home to help our son AND help teach her what extra support she can give Miles.  I'm fairly certain the kids will enjoy doing the exercises sometimes too.

I'll be posting a whole bunch of randomness on here, not only about Miles and his diagnosis, but just cute Miles and his super duper big brother. Because I've slowly started to learn, our life can't just be about Down Syndrome.

1 comment:

  1. Makes you feel better after you type for a while doesn't it! ;) All of us mamas (and daddy's) are dealing with things with our 'littles'!!