I was too tired to write yesterday, but after writing my last blog I felt inspired to get back on the horse. I made several phone calls and I had the attitude that I was “kicking ass and taking numbers”. I called and spoke with three different people, I will keep their real names private. They were CMH/GHS, PB, & J.
When I spoke with CMH/ GHS, I was enraged and I asked them once again why residential wasn’t covered. She said well we will cover the clinical part not he residential part. (Yesterday I wrote the opposite). I also explained that another worker quit. I also brought up another issue that is REALLY bugging me, two months ago I was promised that my workers would get “substantial raises. That has yet to happen. They are being ridiculous about this and I was pissed!!! How can I keep staff at $8.00 p/hr when P is not like other kids they are used to working for?!?! Also where is my request that I put in a month ago for a breakdown on how many medicaid dollars are being billed per month on P? Within two hours I had the raise implemented with 23 days of back pay and I received the medicaid breakdown of monies spent. 🙂 ………winning……….
SO then I’m inspired to talk to PB. He is a worker for the State of Mi. He is on vacation but still talks to me. He explains that policies have been changed because of me or better wording enforced throughout the state of Mi at every CMH/GHS. I say that’s great and how is that helping P and I? He says .. “yes, I know immediately it’s not”. I explain that I have changed my mind on Great Lakes Center For Autism(Great Lakes) and that I have decided on St Louis due to P’s severity and my chronic worry about the after care once he would come home for treatment. PB agrees with me but with a little hesitation. I asked why he was hesitant and he said I really would like to see P. I laughed and said, “we’re available now” we both laughed and then he said we will schedule a meeting on Monday. He will be coming to my house to meet P so he can see for himself the way that we live and the way we are in prison. He will see the holes in the walls, the stained carpet, the mold crawling up the bathroom walls, the hole in the floor that is straight to the basement, the food stained walls and ceilings from P throwing food. He will immediately notice the swing smack dab in the middle of the living room and therapy balls and motivational “signs” written on paper that I tape to the walls for inspiration. There are no decorations and no nice pics on the walls. I’m really excited. Except for one thing. This guy works for the state… I hope he doesn’t turn me into Child protective services. 😦
The next person is J. She also works for the state. She deals with medicaid. I call her and ask if she recalls my case even though we have never talked, I have sent her e-mails before. She says she does know who I am. I explain how we want St Louis versus Great Lakes and in a nutshell she doesn’t agree with my decision. As a matter of fact she says St Louis will not be able to handle P and that he would be back home within a month. She also says something VERY disturbing, she says ” I know you don’t really want to warehouse him, right?” W H A T ????!!!!???? Are you kidding me? What is wrong with these people and based upon their statements its very clear that they just don’t understand the position that parents can be put in. Her response and question was ludicrous.
Although she really hurt me and I was crying.. no, I was sobbing hard and couldn’t catch my breath, she was great to talk to. In a nutshell, she is calling CMH on Monday morning and seeing why they wont accept P. I flat out asked her, “IS THIS A COVERED BENEFIT”? She says, “Yes”. I said then why is this so flipping hard to get them to cover services? She said I don’t know but I will help you. However, I would like to push for Great Lakes, I feel like your son can thrive and be back home with you.
I’m as confused as ever.
Do i fight for a permanent home for him and struggle with “warehousing him”?
Do i fight for Great Lakes where he receives intensive ABA treatment then worry about him coming home and not being able to provide a stable consistent institutional/educational type home here?
ABA is no joke. It must be implemented in the SAME way at all times of the day 24/7. No breaks. I mean you get creative and find ways to use it and before you know it, it’s second nature, However, it MUST be used by everyone in order for it to be effective. The schools, his therapists, me, Shamma, Uncle, etc. UGH….How will I find therapists. I’ve done ABA before and i was paying $35-$100 an hour…EVERY therapist lived in the Detroit area. NOT ONE IN GENESEE COUNTY!
I’m happy that my crazy, moment of desperation, begging, pleading, sobbing, attitude of kicking ass and taking names worked. I said some VERY inappropriate things that were rude. Then I would swoop in with kindness and tell them some sad stuff. I don’t care, it worked.
I’m getting a home visit from a “high up person” that works for the State of Michigan and another person who is high up the ladder that is the medicaid “guru”, she has promised to help us. I feel like I’m winning….. again. Yet feel just as lost as ever.
I am going to take this weekend to spend with friends and forget about my war for a couple of days. My friends are so awesome. They let me cry, they are brutally honest, they try and understand, sometimes they get me drunk. lol Regardless they are great. All of them. I just love the crap out of you all. So is my family. Especially my mom aka “shamma”. I swear I would be dead if it weren’t for her. She is the most amazing woman. She is getting a 2 day break from P. 🙂 I couldn’t be happier. I understand why people love Christmas so much, because if it feels this good.. I would want it every year too…lol My grandparents worry so much so does everyone else.
I just want you all to know.. that as hard as this stuff is. I will continue to fall and have a roller coaster of emotions, but I’ll figure it out. That’s what a mom does for her child. Today, I’m ok. I will continue to be “ok”. Just remember I’m at war but I’m going to win. In the meantime try not to worry too much and just keep praying and cheering for us. I love you all !!
Thanks for caring 🙂 Thanks for reading this boring stuff….sincerely,
Lisa, Mom to Preston a happy non verbal boy that is trapped by autism
Preston….all of this because of you, because I love you. 🙂