We’re screwed

Screwed. We’re screwed. Totally screwed. After seven months of navigating the mess that is our system and drowning in denials, we finally sunk. Our child falls between the cracks. No organization or government assistance can help us. Officially.

What happened was that I decided to reapply to everything I had already been denied for or hadn’t heard back from. I was starting to get my second round of denials when IHO contacted me. I had already filled out one application for them and never heard back so I filled out another and included a faq sheet on AMC, a personal letter, Laelia’s picture as well as  the filled-out application complete with footnotes. Well I can now announce that our mystery has been solved. IHO was the answer. It  stands for  In Home Operations.  According to  IHO there are two ways for a child like mine to get a  MediCal waiver: Regional Center and IHO, the later requiring a  six months to a year waiting list to even start the process (something we could have done seven months ago if we had  known anything about it).  We would have gotten the Home Community Based Model Waiver.  That’s what the other little boy with arthrogryposis got years ago as we finally discovered.  The wait to get the waiver  would have been  really long. There would have also  been a  wait to get MediCal after we had the waiver. But then after all that waiting we  would have  used the waiver to get MediCal and used MediCal to get into Together We Grow and used Together We Grow as an anchor between us and sanity by relieving us of this burden of caring for a disabled child and doing her  painful stretches.

Only we can’t. In the last  few years  MediCal changed and Together We Grow changed as a result.  I was told that nurses aren’t required for Laelie’s stretches or splint/brace care since anyone can be trained to do that. But anyone can be trained to  use a feeding tube or give oral medications too! But unless Laelia is on consistent medications or needs to be fed a special way then there is ‘no room for her  in the inn’ so to speak.  And don’t think any other daycare will touch her. Too many splint changes and stretches and orthotic shoe care for your typical daycare. In other words, too special for daycare, not special enough for special daycare.

A lady came  to my home to  explain all this in person and offered me counseling to cope with it in the same breath. I took the news about as well as I first took  Laelie’s diagnosis–stoic then devastated.

I’m still starting the process of applying for IHO’s waiver to see if I can get it next year  and maybe use it for something else. I am officially at the bottom of the waiting list. I’m also going to apply for Together We Grow. The lady that came over to explain how screwed  we are  said that what I was trying to  do  was “ground breaking.” That means I will need to fight for this hard and not take “no” for an answer. My daughter does not fit into anyone’s box.  Arhtrogyrposis isn’t even on anyone’s radar. So everything I do, I do tooth and nail.  

But what no one realizes is that I have zero energy to deal with this. Dealing with all this crap has been ten times worse than  dealing with her disability. Why complicate someone’s grief with all this? And in the end it was all a waste? That sucks!

Laelia started to outgrow her infant car seat so we bought her a new, bigger one that arrived in a big box. Charley and I wordlessly  exchanged a look and then raced to crawl inside it.  It was like being a kid again, only this time our legs dangled out. It was a safe feeling. We camped out in it in the middle of the living room driving the cats crazy. It’s funny how the simple pleasure of crawling in a big cardboard box can make a day better.

I’m taking the rest of the week off. Not from work but from dealing with all this. I don’t have my OT auth for this week and today she missed her appointment because of that. I’m letting her therapist deal with it. She also still doesn’t have her AFOs and I have no idea where we are at in that process. But I’m not dealing with it this week.  I have no earthly idea what we’re going to do now. But I have to take a step back and grieve a new loss–the loss of easiness. The loss of smooth sailing. The loss of simplicity in raising our daughter with a consistent daycare and government assistance that is just an application away. The loss of the  normalacy  I believed  I could achieve with Together We Grow caring for my unique daughter while I  was building my career. The loss that comes when you reach out for something just out of reach and come up with empty air in your fingers.

Then I can fight again.    

4 Responses to “We’re screwed”

  1. Beth says:

    I will rack my brains (like I have more than one?!) and see if I can think of some way to help.

  2. aduma says:

    Since I have no idea how to help, I’ll pray for you guys. Have a blessed day

  3. Robin Clark says:

    Hi Wesleys,
    My pastor’s wife is friends with Susan Tom, a woman who has adopted 13 children with disabilities, including arthrogryposis. Susan has had an HBO movie made about her and was one of the first recipients on Extreme Home Make Over. She counsels families all over the world with children who have arthrogryposis. She’d like to contact you to be a support and offer advice and suggestions to you. She wanted to know if you’d be willing to share your phone number. If that isn’t what you’d like to do, what would be an acceptable way for her to contact you? Our pastor’s wife is Janet Bunje and her email address is jbunje@pacbell.net.

    I hope that Susan can be helpful to you!

    Robin Clark

  4. Laelia Sky Wesley » Blog Archive » Ten Points of Contention says:

    [...] me federally funded daycares. They couldn’t help me. Together We Grow was mentioned, but they won’t take my daughter. They did give me the number for Easter Seals and told me that even though they didn’t think [...]

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