Help.

Naively, I thought that if you “did the right thing” in this country it would pay off.

 

Naively, I thought that if I did all I could do to help my son, I’d be able to get help for what I wasn’t able to do for him.

Boy was I wrong.

See– in Michigan, at least, you can’t get help with a disabled child unless you are considered to be low income.  You can ONLY get help if you qualify for Medicaid. It doesn’t matter if you have a 90 pound ten year old who isn’t potty trained and ruins everything in your house because he’s destructive. It doesn’t matter that he gets aggressive and mean at times and is self injurious. It doesn’t matter that he has the mental capacity of a toddler. It doesn’t matter that he needs to go to multiple doctors and be on multiple medicines and supplements. It doesn’t matter that your insurance company randomly decides to stop covering therapy and you have to fight them again and again to try to get it restored. It doesn’t matter that you HAVE to work because you can’t live off of one income and there is absolutely NO help for families with disabled kids. You can’t drop them off at latchkey.  You can’t hire a neighborhood teen to babysit. It’s all on you. You have to research treatments…and doctors…and schools…and therapies. It’s an uphill battle every single day.

My husband and I pay out of pocket for so many costs related to Sean and we just scrape by much of the time. Last summer, I was given Medicaid in an error by the state while trying to be placed on the autism waiver list. (The autism waiver which is nearly impossible to receive.) My whole family was given it in error. We could have kept it and it would have given us all dental, vision, prescription, and medical coverage. Our kids could have gotten free lunch…there’s $45 a week right there. BUT it was an error and I didn’t want to take it if I didn’t really qualify for it. It took me SIX WEEKS to get that reversed.  During that time we didn’t take advantage of the system.  We could have easily, but we didn’t. I have tried multiple times to go through the “right” channels and get some sort of help for him.  Everything ends up being a dead end.

I’ve been told by people who work at these agencies (DHHS, CMH, SSI etc.) that I should have kept the Medicaid even if it was a mistake. I’ve been told to quit my job.  I’ve been told to get a divorce so our income on paper is less. This is wrong and disgusting. It took a lot of pride swallowing for me to even seek help, never did I think it would be this hard to get something. We NEED respite care desperately. We need help to cover his therapy which our insurance has cut and will likely deny our appeal.  We need help.

Sean is severely impacted by autism.  He functions at about a 2-3 year old level.  He is nonverbal. He is not potty trained. He needs help with most of his basic needs. He is very loved and well cared for, but I’m not going to lie, he is exhausting.

It is 2am right now and I’m up with him.  There is unfortunately no sleep in sight. I have to get ready for work in a few short hours. I have to keep my job because I have no choice. Everybody always tells me that they don’t know how I do it.  The truth is that I “do it” because I literally do not have a choice.

 

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Nine.

It’s been about nine years since I first started noticing that something was going on with Sean.  That makes sense because it was about nine years ago when he received the H1N1 flu shot and began to have low muscle tone issues.  It’s when he stopped meeting his milestones.  It’s when the hell of this journey really first started.  I said hell and unfortunately, I mean it. This is not fun for him and it certainly isn’t fun for the rest of us either.  Most of the time I feel the worst for him, but I would be lying if I didn’t admit that it’s really taking a toll on me emotionally and physically. It’s hard on our whole family.

I wouldn’t wish autism and PANDAS on anyone.  I’m really not sure which is harder as the lines between blur together and they are hard to separate. The neurologist talked to us about the perfect storm that probably led to where we are today.  Vaccine injury. MTHFR double gene mutation. PANDAS aka immune system dysfunction. Inflamed brain. Autism. Sadly, I didn’t know this nine years ago.  I tried and tried to get answers and didn’t.  It took three years just to get the autism diagnosis, but what might be different now if I had known about PANDAS and stopped it before so much damage was done?  What if our pediatrician would have listened to me? What if I would have known about biomedicine when he still had words, when he was still behaving “neurotypically” to the rest of the world–although I always knew something wasn’t right.

What if. What if. What if.

We are going through an extremely hard time with Sean right now behaviorally and to be honest, I don’t know exactly why. I think it might be a few things going on, but it always just feels like a stab in the dark trying to figure it out.  The doctor who would have been the biggest help to me has closed his practice completely. We have an appointment with our biomedical doctor, but not until early November.  Our pediatrician (not the one he had in the early years) is wonderful and understanding, but can’t really help with this stuff. Talk about feeling helpless.

Before recent weeks, I would say the hardest thing about this journey (beyond the no talking and rough patches of no sleep) was that we can’t do things like other families can do. We can’t just hop in the car and go to celebrations, visit museums, go to restaurants or movie theaters, etc.  Church for me has been almost nonexistent for months and that really stinks. However, we used to be doing okay if we just stayed home in his familiar place.  That’s not really the case now.  His behavior has been so tough, even at home.

The best way to describe his behavior is to think about an 88 pound toddler going through a very rough case of the terrible twos or threes. You can’t leave him alone for even less than a minute. When he doesn’t want something instead of shaking his head no or signing “all done” like he used to, he smacks it off the table.  It’s not all the time, thankfully, but he’s been playing in and even sometimes eating his poop if he’s given more than a minute or two alone. If you are eating at the table and have a drink, he will think it’s super funny to come by and dump your drink out all over the table. He’s tearing things up, knocking things off tables and shelves, etc. Spitting his medicine out. Taking off from the dinner table with some of his drink in his mouth and then spitting it all over the carpet and furniture is another one of his latest tricks.  Kicking holes into the walls even when he’s not angry. So many of these things have happened here and there in the past, but lately it’s been multiple things in a short time period.

Just about every day, I hear not so great news from the therapy clinic about his behavior.  He especially hasn’t been doing well in speech or OT. He won’t keep his clothes on there lately which is so frustrating. I need to know these things of course, but it’s so defeating. I feel like we try and try with him and nothing really every gets better.  It might for a short time, but then it gets worse.

I’m still waiting on one letter from the doctor to file my insurance appeal. Just about every area of life with Sean is falling apart right now and I feel completely helpless and utterly exhausted.  I am a strong person, I know that I am.  However, even the strongest of people have a breaking point. If I didn’t have my faith and my family, I would be done.

I’m not sharing this for pity.  I’m sharing this because this is life with a child that has level 3 (severe) autism. I’m sharing this because my family needs help.  We are trying to help him in every way we can at home. Financially, this is really tough.  Physically and emotionally, probably even harder.  The state of Michigan does not help us with a penny.  We can’t get respite care.  Our insurance company is taking away ABA (behavior therapy) time from him which we are fighting against.  I do not have a good school option for him. We need hope.  We need the tide to change in our favor.  We love this boy so much, but are feeling pretty helpless to really help him right now. Thank you for listening.

If you are a prayerful person, please pray for us.