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.

We need help…

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…

 

It was all going so well…

Sean had a terrific day at therapy today.  Autumn helped me out and picked him up today so I could work later in my classroom before tomorrow’s Open House. She told me that they definitely made a point to let her know that he had an amazing day! Hooray! I’ve noticed it too.  I really think the CBD oil is helping him.  The evenings are a little harder, but we are getting there–I think. 😀

When I got home tonight, he was in a good mood and as adorable as ever. He was already bathed, hair nicely combed to the side and eating a snack…well more than one because this kid never stops eating. 😉

Things were winding down for the night. I have a really long day tomorrow so I was just about to go to bed when  I thought I could hear Sean awake in his room.  I asked Kelly to please go check because if Sean sees me he’ll want to go for a car ride, a swim, a snack, you name it!  Kelly left our room and shut the door again. I was in a texting conversation finishing a text when I thought I heard Kelly yell. I heard him again and this time I could tell he was yelling for Emma.  I opened my door and saw the scene.

Basically, when Kelly opened the door he was greeted with a naked Sean at the bottom of the stairs covered in poop from head to toe–literally!! I’ll be honest, the room and hallway looked like a crime scene, but instead of blood…it was poop!  Sheets, carpet, walls, and Sean were all completely nuked.

Now that’s all a bummer especially after the promising day he had.  However, I’m not going to let it get me down because here’s the part that is so dang amazing to me.  We have trouble with Sean and the whole Pit Crew shows up again…

Kelly quickly took Sean into the shower unbeknownst to me and started cleaning him off.  Kelly said that pretty much just the whites of his eyes were showing. Kelly called for Emma and all three kids showed up. This is when I arrived at the crime scene too.  I stripped the bed and started the washer.  Emma grabbed the carpet cleaning machine and took care of the hallway, stairs, and landing. Liam went and got a new pull up for Sean and helped get the dirty clothing to the laundry room as he of course also touched other things in their bedroom.  Mallory grabbed the pets and put them in closed rooms so they were out of the way and then wiped down the wall.  It’s my Pit Crew and I can’t begin to tell you how thankful I am for them.  I know that not everyone in my similar shoes has this kind of support. So, instead of focusing on the mess, I’m going to bed thinking about the good that once again came out of it.  ❤

 

Let’s get real…

Sean had an AMAZING day on Friday both at home and at therapy!  In fact, he got the best report I’ve seen in quite awhile. I could tell a difference before I took him there on Friday morning.  He was listening so well.  He was very attentive and making good eye contact. He let me stop and “count his freckles” multiple times and  he laughed and laughed each time. He took off his shoes shortly before we were leaving the house.  I told him once to get his shoes and put them on or he couldn’t leave for school.  He went and found them and put them both on in just a matter of minutes.  This is not typical.  Usually you have to ask him multiple times and even help him as he’ll only do one or will refuse completely, etc. He had started the CBD oil on Wednesday night.  I really think it was starting to help and it probably still is helping.  However, he stopped taking abilify completely Friday night as we’ve been weaning him for the 3-4 weeks.

I am certainly praying this is a very short phase as honestly he’s very difficult unless he is sleeping.  This weekend there has been a whole lotta smashing and throwing food, taking a drink and then spitting it out, climbing on tables and counters, crying and then laughing, and head banging, especially when he doesn’t get his way. All of these behaviors have been elevated.

These pictures are two different walls in our house that took a beating from Sean this weekend.

I’ve repaired a few holes throughout that house that he made from when we first moved in and before he was treated for PANDAS.  Let’s just say that I am not very good at it. I’m thinking Kelly or Uncle Mike might need to help these walls out.

I thought I’d have great news to share all weekend because of how Friday was for him.  I think I was just a little naive to not realize that when he stopped the last 1/2 pill of abilify completely it would be tough. It’s okay.  I’ve been wanting him off this medicine for quite awhile.  Right now he’s not taking antibiotics, steroids, anti-psych meds, or anti-virals. I’m grateful he’s in a place that we could pull all those things back and infection wise he’s doing pretty well.  This is just a big little bump in the road.

Like my Mom always told us…this too shall pass! Hopefully that is sooner than later! I really don’t want this blog to be doom and gloom. However, I want it to be real and that means the good, the bad, the ugly and the amazing too! 🙂