I’m not ashamed or embarrassed to admit that my family needs help. Of course the financial cost of our journey with Sean is a pretty expensive one, but that’s not the help I’m referring to in this post. Somehow we figure that out. We make our deductible payments and copays. We squeak out the money for the supplements and treatments each month. Kelly works overtime and I’ve been working two jobs since the spring. We make it work. When you come to our house, you’ll see we could really use some new carpet, we have a couple of new holes in the walls that need to be fixed, a couch that has a few holes in it, and a refrigerator with some dents on the side. This is mostly due to Sean unfortunately, but not entirely. Would a lottery win be helpful? Sure would, but that obviously isn’t realistic. So until we slowly replace things, please just look the other way. 😉
What we really NEED is respite care. We are not the only family in our similar situation that needs this help. I have talked to many parents who need it and can’t get it. You can pay for respite out of pocket, but it’s expensive and if we had that kind of money, then this post wouldn’t be needed.
Today, we found out that the therapy hours we thought we had set up are not going to work out. I’ve been off all summer from school thinking that I was all set for returning to work on Tuesday and found out today that we need to pick Sean up earlier than we had planned. That means that I have one business day to figure something new out. To say that I’m upset and frustrated is an understatement. I love his clinic, but I really do not think this is fair to us, but like my mom used to always tell me–nobody ever said that life is fair. So it’s the next set of cards that we’ve been dealt and Kelly and I will figure it out.
However, it dawned on me today that it comes back to not having respite care. If we had respite care and help with picking him up from therapy each day, it would really matter if the time changed. (not that I wouldn’t still be upset, but it wouldn’t feel like time to panic a bit)
There is a process in Michigan to receive help if you do not qualify for Medicaid. (I have a whole long story for another post about what a ridiculous government mess that was last summer.) You have to first apply to Medicaid, get denied, and then get put on a waiver list. We did this process. It should have taken about 30 to 60 days max, but instead it took close to six months.
There are about 68 waivers given out in the state of Michigan. (I’ve been given a few different numbers all in the 60s so 68 is pretty accurate.) That is not per year. That is at one given time ever, for the whole state. I was told that Sean was in the “middle” of the list in Macomb County. There are 83 counties in Michigan. I can only imagine how many kids are on that list waiting for someone to age out at 18 or pass away. That’s pretty much the only wait to get the waiver in our state. I also found out that the waiver isn’t just for autism families. It is for any child whose family doesn’t qualify for help through Medicaid.
Not long ago, I went to a meeting at the Macomb ISD for parents of special needs kids to find out about services and help available to them in Michigan. I was really excited because I naively thought there might be some help out there that I wasn’t aware of for us. I ended up leaving after about fifteen minutes after realizing that they were going to share all these great things…BUT only if you qualify for Medicaid. I actually raised my hand and asked the presenter if this was true. He said yes and I got up and left. I wonder how many people in Michigan are receiving Medicaid when they really shouldn’t be? That’s for another post too…
Parents are actually given the advice of quitting their jobs and qualifying for Medicaid. I know at least two families who were told they could divorce on paper and then likely qualify as a single parent household. Really? Families that are struggling every day with children who have been dealt a pretty unfair hand in life (in my opinion) can’t get any relief or help unless they cheat the system? I think this is wrong and I want to change it.
Things with Sean have been extra difficult lately and it seems to be hitting us at every angle. In the last few weeks, we found out that our insurance is partially denying ABA services, our favorite and most helpful neurologist is closing his practice, Sean’s speech services have been cut and his hours are now changed too, On top of all of that he’s weaning from abilify and although he’s having pretty good days at therapy, he’s a bear at home as of late. He is destroying things. Spitting on everyone and everything. Smearing poop. Hard to get to sleep. Being really mean to our pets. Not listening like he used to. SO.MANY.HARD.BEHAVIORS! 😦
Honestly, I feel like giving up. I know that I won’t, but I’m so tired of fighting and so tired of one hurdle after another. It’s hard not to feel hopeless at times. If I didn’t have my faith, I honestly don’t think I would make it. In fact, I know I wouldn’t because even with it, I’m having a hard time lately.
It dawned on me tonight. Maybe all of these hurdles are just pushing me to do something to change this for not only my family, but others too. This mom is beyond tired. This mom is upset. This mom is feeling defeated. But this mom isn’t giving up.
The gloves are on…