Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Wednesday, February 21, 2007

Jumping Up On My Soap Box

Today is going to be a long day. Not a long bad day, but a long day nonetheless. I’m working until 3:12pm and then I’m heading to pick up the boy and then we head together to our therapy place. Today is my OT evaluation for my hand. I’ve been in better straits where my hand is concerned. The pain no longer ends at my elbow, it curtails at my shoulder. Drag. I tried to open a child proof bottle this morning with Sandis’s antibiotics in it and I couldn’t get it open. My lovely hand. It is amazing how many things we use our arms and hands for in daily life. When you lack that basic strength and ability, you suddenly begin to realize how important it is. I imagine that is true for a lot of things.

Sandis is on week two of speech therapy. He has occupational therapy first. Occupational therapy was the therapy I was most excited about for Sandis, and it still is. I see the most improvement with my son’s challenging behaviors with a regular sensory diet, and that is awesome for everyone involved. Last week Sandis got this new thing called a chewy tube. I really need to take a picture of it and show you as it has been amazing for Sandis. Sandis’s chewing, sucking, and mouthing objects has been one of those things we’ve been working on helping him stop, but it never fails that he stops chewing and sucking on one thing and just moves onto chewing and sucking something else. He obviously feels a need to do this and rather than butting heads with him on it, I’m at the point where I want to just let him have something suitable to chew. I remind Sandis about chewing on the chewy tube a lot, but he also initiates chewing on it. He’s taken to gnawing away on it at the end of the day as we sit around after dinner doing our choice time, reading books, or watching movies. He gnaws and gnaws and gnaws. The awesome thing is his thumb stays out of his mouth and so do his toys and his clothes. He gets to chew which is soothing for him, and we save his thumbs and his clothes. The school isn’t ready to let him use a chewy tube just yet. They say he can chew on a pen or have a hand fidget toy. That is well and good, but when Sandis needs to chew, he will chew, whether or not he has the stupid hand fidget toy or not. Actually, he will chew on the hand fidget toy, which is why they have decreased his options for hand fidgets because he has popped more than one. Will they never learn? Sometimes the most obvious options for helping are the last ones chosen.

We have our Family, Friends, and Fun night tonight. Free dinner, free child care, and an hour and a half gabbing with other parents who have special needs kids. This group, although adding one more thing to my super stupid crazy schedule, rocks. I’ve thought about going to diabetes support groups in the past, but I think that this support group meets my needs more than any diabetes group (with primarily type 2 diabetics) ever could. There are so many other parents with children that are Sandis’s age that are on the spectrum. There are also parents of kids with physical disabilities. They all “get it.” They laugh and they cry and they understand how important it is to not be alone. I hope to one day give back to other parents with special needs kids, especially when my life slows down a little. I know it will one day, and one day I will be a veteran of the IEP process, a veteran of obtaining autism diagnoses, and just in general a veteran of the special needs parenting arena. It’s a huge thing us parents take on, and when suddenly your life is slammed with something you never hoped for and never expected, the twists get a little tighter and the visibility goes down just a bit more. We all need navigators, and were it not for the initial contacts I was able to make with parents and educators in the special needs world, I would not be where I am with both Sandis and Gracie right now.

It ticks me off that you go to the doctor, you go through the entire evaluation process, and then you are handed this massive report which says your child has autism. It changes your life forever, yet it has few recommendations for follow up care. You are on your own buddy, on to my next evaluation. Good luck and well, Good luck!

Parents NEED eachother. It is scary. How do you make sure that your child is getting what they need during school and day care? How do you deal with all those extra appointments? What are your rights concerning employment, child care, school? What additional services from city, county, state, and federal programs do you now qualify for? What additional charitable organization programs can you now qualify for? How do I get help? How do I get babysitting? How do I get a break? How do I pay all these medical bills? How do I meet other parents like me?

These are questions, real questions, and they need to be answered. It’s amazing how many different places us parents need to go to get these answers! Not easy! So I’ve decided, if I’m going to get on a soap box it won’t be a diabetes soap box. It also won’t be an autism soap box. It is going to be a special needs kids soap box. Because families with special needs kids have special needs. And there is not one place out there that provides what they do need. That is why at this time next year, I’m going to start reaching out to other families. I’m not sure how yet, but I have a few ideas. I just may have found my calling.

5 comments:

mcewen said...

I've noticed [well my pal did] that there is an alarming trend, where 'experts' are there to evaluate [at a price] but as far as getting 'services' are concerned, well that's an entirely different matter.
Cheers

Vivian said...

Sarah, I so love you. You always have an answer or at least an idea behind your gripes.
I was actually thinking about this same thing last night. The support group I started for Type 1 and a small group for food allergies are the only ones in our county. Yet we have so many kids with special needs. I wanted to gather all the parents so we can take on some of the school issues but no one has organized these parents together. I can not imagine how alone and up against a wall they must feel. So I too was thinking of some sort of something for all the kids with needs and the parents.
Your awesome!

Chrissie in Belgium said...

Sarah - you do have a long day ahead of you. I think you show dedication, finishing the long day up on the soap box. For what it is worth I applaud you.

Molly said...

You go girl! Sounds like a great match for you.

mumkeepingsane said...

That was really inspiring. I finally made it over to your blog. :)