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.


Monday, March 19, 2007

Coming Together

Five months post autism diagnosis, and things are finally coming together. Forget that it took six years to get that diagnosis. Everything is coming together that will lead my family and my son to success. There are days that I have felt like crying. There are days that I’ve felt that the fax machine is my only friend. There were days where forwarding 8 gazillion documents felt like my one true purpose in life. But those days, I hope, are coming to a close. Our circle of influence is getting smaller, and we are starting to receive what we need.


In January, I never would have believed that two short months later we would suddenly have the abundance that we have. Our monthly income has increased to the tune of more than two times what I gave up with the second job. Our medical bills have been, well, in Sandis’s case, ELIMINATED. Doors for help for Sandis have been opened, and will stay open for at least the next seven years. And we are taking steps that I feel like we have spent our entire lives preparing for.

I put money down on a three bedroom/2 bath apartment over the weekend. This was one thing I had decided I would do if Sandis were approved for SSI. The kids are getting older, my boy and my girl, and I’d like for them to learn privacy skills (seriously seriously lacking in my house currently). We are running out of room in our 2 bedroom. Safety is a concern as not only is the building not secure, but our apartments are the cheapest in the area and unfortunately do not attract folk that are in their finest periods of life. It is time to move on up. We have this opportunity, so graciously given to us. It feels like an award.

We have a conciliation conference on March 28th with Sandis’s school, and my PACER advocate. I have isolated the main concerns I have with his IEP, and after extensive conversations with his teacher and my advocate, I have some great ideas for services for Sandis. Of course, my ideas are that only, we will see what services the school and the team see fit to provide, but we are on our way. We are on our way. Ah man. If I could only adequately convey how full my heart is, the heights that my spirit has soared in these past few days.

I visited Sandis’s respite provider on Saturday. Sandis came with and he LOVED it. The house is an older house (quite quite old actually), but it is on a farm, ½ a mile off the beaten track, and just has so much damn stuff for him to do. We are going to give it a try in April one night and see how things pan out for him, and for her. If things go well, then I have two nights a month, for three months, to take advantage of a much needed night off. And Sandis will have a blast. It’s perfect.

I have Gracie’s 4 year old and TEFRA physical tomorrow morning. We’ve blocked off an hour and I’ve composed about three pages worth of concerns and I also have put together information concerning her feeding habits. I feel as though Sandis’s diagnosis and service journey is coming to an end (at least as far as acquisition is concerned), and Gracie’s is just beginning. Gracie had her early childhood evaluation done this past week, and did SWIMMINGLY. I was so impressed with my little peanut. As for me, my primary concerns for Gracie are medical, which for me was a revelation in and of itself. Sometimes I feel as though I have no concept of normal development, as I have never been privy to it! But Sandis and Gracie’s issues are very different, and so I have my own little window of normalcy with each in different ways.

I am expecting Gracie’s doctor’s appointment tomorrow to result in a neurology referral. At least that is what I am hoping for. Keeping records of my concerns over these past few months has helped me to narrow my concerns to distinct issues with Gracie’s muscular strength (actually lack of strength), muscular rigidity (in some areas), and posturing. I am hoping that Gracie’s doctor will have a direction for us to head in. I am hoping that Gracie’s diagnosis journey will begin in a way that will yield positive results in the way of services and isolating specific needs of hers so that we can MEET those needs.

I know there will be days in the future that I don’t feel this damn good. But today, it just doesn’t feel hard. Life doesn’t feel hard. It feels right. It feels blessed. It feels all over so singularly perfect. And that, my friends, is fabulous!


Penny Ratzlaff said...

I'm glad things are looking up for you, Sarah. And, you're wise to think it won't always be that way. Just enjoy it while you can, and know when things go down again, that they will eventually come back up. So goes life.

Drea said...

It makes me feel happy to read your post :)

Scott K. Johnson said...

Makes me happy too. Very glad to hear it.

Lyrehca said...

So glad to hear things are coming together with Sandis's diagnosis, Gracie's evaluations, and you're buying a new place to boot! Enjoy this time for as long as you can.

Amberthyme said...

Hurray!!!!! I'm happy for you. You deserve a break and another wonderful person that loves to be with Sandis will be a great addition to your circle of support. I can't wait to hear about your new home. I read "tomorrow's" post so I know that you are disappointed with Gracie's doctor visit but after the gruling 4 day Mayo Clinic, when you can finally get some answers about your lovely peanut, you'll hopefully be back on top of the world. Hopefully the clinic doesn't come when you are moving!