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.

Ten.

Today he turns ten. It’s hard to believe that my baby is a decade old today! If I think about all of the things a neurotypical (please don’t say normal to me, it’s pretty offensive to be honest) child at ten is able to do, I could get pretty depressed.  So, for the most part, I don’t go there. At the beginning of the school year, I can’t help but think of what grade “he should be in” especially because he would be at my school with me.  The year of kindergarten round up that didn’t happen was probably the hardest.  I’ve truly never been in denial with Sean.  In fact, I’ve been the complete opposite. I knew in my gut something was going on, even when pretty much nobody else saw it or believed me. I don’t fault them, at least most of them, as I have the mama bear intuition with him. I wrote “at least most of them” because honestly, there were a few medical professionals and therapists that I don’t think helped matters much, but hopefully they have grown in their knowledge over the last ten years and are helping others.  My biggest regret with Sean, minus the H1N1 flu vaccine in 2009 is that I didn’t know about the biomedical route years ago.  I didn’t realize he had PANDAS and that if I treated the PANDAS years ago it could have made a significant difference in his life. However, like my sister Kathy always tells me…you can only make the best decisions with what you know about at the time. She’s right, but I still wish…

Here are the things to celebrate this year. Sean’s receptive language continues to grow.  That boy knows a lot more of what is being said than you think he does. He opened his presents this year and initiated it. This is huge to me!  I’ve been wanting him to do that for years! Right now, infection wise he’s doing very well.  Hopefully, now that our saltwater pool is done for the year, we can keep him in a good place with his PANDAS by other means.

I’ve included a few pictures of Sean and his brother on the day of his party. He was pretty hyper all day, but really enjoyed his party which was awesome to see. I’ve also included a picture of his first day of “school” even though he goes to the therapy clinic instead of a school. Autumn sent me this picture and it made my whole day.  He stood still and even gave a smile his best effort.  I love this boy!

If you are a praying person, please pray for Sean and the year ahead to be his best yet!  Thank you! ❤

 

Mark one in the WIN column…

Today was a victory! 

We spent the day at my sister’s house celebrating Labor Day Weekend and it was so enjoyable.  Sean was in a good mood and well behaved all day.  He swam in her pool for hours. He was jumping in the deep end, sliding down the slide, asking for Uncle Mike to flip him in the pool, and wanting to be pushed in.  He did a good job eating, he kept his swimming trunks on, no potty accidents.  He was just a rockstar the whole day.  

Right before we left, I gave him his second dose 5HTP and CBD oil for the day.  I REALLY think they are both helping and I couldn’t be happier about that. 

I can’t tell you how many times we’ve had to leave early, or shortly after arriving at a family party because he just couldn’t handle it. I can’t tell you how many things we just miss because we know it’ll be too much for him.  

Today we were all able to enjoy ourselves. Today was a great day!  Way to go Seanny!! 

Today was a victory! 

The dreaded EEG…

Our neurologist is awesome and so is the person (Ramsey) he sends to your house for an EEG.  Sean has had a few EEGs in his 9 years.  This is the second one done at home.  The first one went way better than I expected to be honest.  This latest one was harder than I anticipated.  Meeting in the middle of those two experiences would have been nice.

It took about an hour to get it all on him.  Poor Kelly took the brunt of Sean’s displeasure. Kelly literally had to sit in front of him on a chair and have Sean wrap his arms around him.  When Sean would get too upset, he would try (and too often succeed) at butting Kelly’s back with his head. This would cause some of the connections to jar loose and we’d be back at square one. We got through it though, but all four of use were sweating by the time it was done. If Kelly hadn’t been there this time, it would have been nearly impossible to get done.

The doctor wanted it hooked up for up to two days.  Having him wear it while sleeping would have been important. Ramsey said that he had hoped we’d get an hour of reading out of this EEG.  Kelly and I took Sean to DQ right after because not only would it take his mind off of it all for a bit, but he also deserved a treat.  He was pretty tough to handle during it all, but I am sure he was uncomfortable and scared too.

I took the other kids to finish their school clothes/supplies shopping and received word that Sean had pulled half of it off.  He lasted and hour and 45 minutes with it all on.  WE pretty much knew that unless we strapped him down, he wasn’t going to keep it on.  Fortunately, we weren’t having the EEG done because of a suspected problem. Hopefully, the doctor can get some sort of data from this one because I’m not thinking we’re going to do that again anytime soon! 😉

 

 

Interesting or infuriating, you pick…

Personally, I’m going to go with infuriating. You be the judge for yourself.

I posted for help yesterday and I’m really glad that I did.  Networking and gaining knowledge on anything that might help Sean is just one of the many reasons I started this blog. Maybe someone will read something and tell us about a new therapy, medication, service, etc. Yesterday, a friend put me into touch with a friend of his who has fought to get her child help and has been an advocate for other children in Michigan.  This is just the connection I needed! Thank you Andrew!!

She told me where to call and what to say.  She told me that they would deny that he could get help and give me the run around.  Yep. That happened. I’m not giving up though.  I’m going to push it further at this level and then if I don’t get anywhere I’m going to be vocal publicly.

The lady I spoke with today was very nice, unlike some of the other CMH/DHS people that I’ve spoken to in the past.  She did seem compassionate about our situation.  However, I don’t think she was completely informed and I’m not going to just take today’s answer from her as my final answer. Community Mental Health says right on their site that they help children and adults with developmental disabilities.  Well if Sean doesn’t have a developmental disability then I don’t know who does!?

She did tell me something that honestly should infuriate every single tax payer. (bear with me for the backstory)

I told her about how I applied for Medicaid as part of the waiver program.  I had to apply for Medicaid, be denied, and then apply for the children’s waiver. When I did that the state mistakenly didn’t use mine or Kelly’s income on our application, even though it was listed.  Therefore, pretty much instantly (like a matter of minutes) our whole family qualified for Medicaid.  We were a family of six with ZERO income according to the state.  I, of course, didn’t realize it was because of this error.  They had asked me a whole bunch of questions on the phone about Sean and I figured we qualified based on his disability. WRONG!

I told the person that did the intake interview that day last August that I was a teacher more than once.  She knew I had an income, but it still happened.  I even told her that I didn’t think I would qualify because of our income.  She assured me that I qualified that I just needed to continue to the next step.  She had me choose doctors on the plan for all of us, etc.  I went to the pharmacy to pick up Sean’s medicine and had NO COPAY to pay.  I couldn’t believe it.  It happened so quickly. It was relatively easy.  We were getting help! I should have and could have just left it, but I knew that it was an error.  It had to be, so I called to check on it.  The person who answered the phone listened and then asked me if I had a job.  I told her that I did and how much I made.  She literally laughed at me and said that it was definitely a mistake. 😦 So then it took my almost 6 weeks to undo Medicaid in error.  It was a nightmare.  I knew it was too good to be true and it was unfortunately.

The lady today told me that I should have kept the Medicaid.  I told her that I didn’t really qualify and didn’t feel right about taking advantage of an error like that.  She reiterated to me again that I should have kept Medicaid in error.  ARE YOU KIDDING ME? People do you see the problem here?

Let’s recap what some of the government offices in our state have told my families and others too…

Families with special needs children in Michigan have been advised to get divorced on paper to qualify for help. 

Families with special needs children in Michigan are told to quit their jobs and get government assistance and Medicaid to help receive services. 

Families with special needs children in Michigan are told to take Medicaid and other services in error to receive help. 

Doesn’t this make you REALLY wonder what else is going on with these programs?  

I find this infuriating.  You might find it interesting.  You might not even care because it doesn’t affect you, but you never know if one day it will . 😦 

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…