"There is Hope"

Since last December, there have been things going on with Eden that Ed and I were having a lot of trouble dealing with. If you've been reading you know that aggressive behaviors and her increasing anxiety issues are first and foremost among those behaviors. We've slowly been figuring out different approaches to her scheduling, changing the way we talk to her, changing our expectations (not lowering them by any means) and better preparing ourselves when we go out or put her in situations that would cause her issues.

When this first started we didn't know where to go, we asked her primary care doctor (he only suggested an anti-depressant for me), her teachers (who didn't see the behaviors we were seeing), and last we went to our Behavioral Pediatrician.We discussed what things we could do to help in the home and at school. One of the plans was having a Functional Behavioral Assessment (FBA) done. Not sure what happened but it never got done. I think in some ways I didn't ask for it in those exact words so I think there was a communication error.

I mentioned it to the lead teacher at the school and was told they were doing one. After a little while, I asked the teacher and for whatever reason, she informed me that there wasn't a "formal" behavioral assessment being done, they were having their BCBA (Board Certified Behavioral Analyst) look at all the children in the classroom, but not specifically Eden.

Now fast forward to about 3 or 4 weeks ago, we were just ending one of the "billing" periods for the in-home support that was supposed to help us with some of the behaviors Eden was having and switching to the one we had previously. The reasons for those shifts were because first the billing system we were using for the last 6 months (It's called section 65) is a temporary service meant to curb behaviors by helping within the family. For example, she came for 2 hours a week to work with Eden and then another 2 hours to work just with me. I learned so much but she couldn't help me anymore. She suggested a BCBA would be able to help with the behaviors we couldn't figure out.

My in-home support will now be billed through a new billing system (section 28) and as there is always a lag in all things paperwork and there is a state approval for the treatment plan there has been a lag in our in-home support. By lag, I mean none. We should be getting our in-home support back soon.

As for the BCBA, here's the part I love the most, insurance doesn't cover it and I'm not sure why. I do think it may have something to do with the fact insurance companies haven't been made to help supplement the services of the millions of Americans who have been diagnosed with ASD in the last few years and they usually don't do anything unless they are made to do it by law. BUT that's just my opinion and everyone has one of those. Oh and Medicaid/Mainecare doesn't cover it either, heck to have ASD and be covered by the non-income sensitive Katie Beckett insurance program Maine has for disabled kids there is no Developmental Disability(DD) box to check .The nurse has to politely (sure) explain to you that she is checking the "Mental Retardation" box because there is no box for a DD like ASD. Also I forgot to mention there are 51 of them in the state, that's it.

How does one get one of these most illusive BCBA's who are not covered by insurance and probably overloaded with cases? First, my case manager and I applied for funding through the state to pay for this as it is pretty important to my families sanity and probably safety. And then we need to find one, which we did. AND she needs to have time to start working with us. Which she does! We talked on the phone this afternoon and she is going to come out tomorrow and meet with me.

During a pretty lengthy phone conversation, we determined that she needs and FBA done and the school should be able to do this with their "in-house" BCBA. Then once we get the info we can start working on stuff at home. But while waiting for that we are going to do some parent training in behavior and such so I'll know what "every parent needs to know about behavior" because she is a parent of twins (now 18 years old) with ASD. She also told me that getting all of these early interventions are key for her to lead a very "normal" life and to have hope. I told her that's the one thing I know I have...hope. It's sometimes the only thing that gets me through the day but it's there.