So my daughter has agression issues. You can read this post here for some insight.
Or listen to this show on the Coffee Klatch here.
I’m so grateful to have friends and family who are always on the lookout for autism related news for me. Recently, a friend sent me an article about a place that opened in Kalamazoo,MI (Yes there really is a Kalamazoo!).
So I called The Great Lakes Center for Autism Treatment and Research
This facility was built SPECIFICALLY for autistic children with “problem” behaviors like mine. I CAN NOT EVEN express the relief I felt in speaking with someone who understood what was happening to me, our family, and specifically our daughter.
Did I mention that GLCATR is ONLY 3 hours from home?!?! Honestly, it’s times like this that I believe God makes miracles.
I cautiously asked, “How long is the waiting list to get in?” The answer, “There is only one child here now. We have open beds, and not only that, but your child will never receive better care from a full staff!
I drove down to Kalamazoo THE NEXT DAY!
The facility was amazing. Brand new, cutting edge, full of bright and shining staff. I impressed and humbled.
Help at last!
They wanted to meet Issy so back to Kalamazoo we went!
My husband got to see the facility and we had more time with one of the directors. They separated us from Issy so they could get to know her.
Predictably, she showed some of her agressive behavior.
So we left there knowing that GLCATR can and would help her!
That feeling. You know, when you’ve accomplished something so hard. Crossing a finish line, getting a diploma, summiting a mountain. That feeling.
Too good to be true right?
Yes
I’m learning that GLCATR is NOT covered by insurance.
Nor is my CMH required to pay for treatment.
It’s been 2 months since our visit to Kalamazoo. Her agression continues to escalate. 10 days ago she beat me unconscious. My younger daughter used her phone to call for help. I was hospitalized as a level 2 trauma.
We notified CMH of this new incident. And still, they won’t pay for treatment.
We have met/consulted with
1.) The state psychologist Price Pullins
2.) Child Psychiatrist Shelia Marcus and Behavior specialist Judith A. Coucouvanis
3.) High level Department of Children with Developmental Disabilities representative Lori Irish
They each know our story. The horrific nature of Issy’s agression. Yet, there is no treatment coming.
An interesting fact. If Issy were on medicaid, she would have treatment.
So if I divorce Matt, she may get treatment.
If Matt lost his job, she would get treatment.
If Matt died, she would get treatment.
If I die, nothing changes, she still won’t qualify for treatment.
If we relinquish parental rights, she would get treatment.
I honestly can’t even wrap my head around the fact that in the 21st century this little girl can’t get help.
We can’t give up on her. We just can’t. She is our little girl…
[...] 12-17-12 Update here—-> http://thestatuswoe.wordpress.com/2012/12/17/finding-help-is-different-than-getting-help/ [...]
Oh Kelli…I wish we were closer so I could brainstorm with you…all true, you need to have help via medicaid or ??? My daughter is on medicaid but only after she was 18 yrs, and she gets help that way. She only became aggressive and “scary” after she was put on antipsychotic drugs. BEfore she was one to hit or strike out, but not as terrible as when she was on the meds. Is Issy on meds? I have a good friend here who works w/kids under 18 who get services due to financial status and will ask her if she has any ideas that might help. What do the doctors say you should do? Do they want to give her meds? I am praying and searching my brain to see what can be done, I do know what you are going through. Until we took Farema off a lot of the meds, we were terrified at times, and it is a helpless feeling, but Kelli…there is hope. I am praying…Lauri K.
FYI..I am still trying to think of ways to fund your daughter’s going to the facility, as they will be a great help. Remember, though there is so much being said about autism and the tragedy in CT, our kids only lash out at us, usually moms, or siblings, but aren’t capable of planning so horrific an attack as we’ve seen this past week in CT. Our kids are lacking in verbal skills, unable to express pain or saddness like others, and do lash out and sometimes due to size when they are no longer toddlers, we get hurt in the process, but they are always sorry after, and they mean no real harm though like a small child, they need to lash out when communication is blocked. There is great hope for you Kelli and your precious daughter and I know it will come, hopefully soon! God bless you for your strength and unfailing mother’s love. Lauri
Well you and I are probably going to get to know each other. At least our daughters will. My Maggie starts there next week. Such a relief. I have been begging to get her in there and now it has finally came true. I now have some hope in my life.
Oh Aimee! I can’t wait to meet you! Are you on Facebook? Here is the team issy page. Message me there if you can and we can exchange contact information. I can also introduce you to Jessica who has a son there right now. http://www.facebook.com/TeamIssy?ref=hl