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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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! 

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.  ❤

 

It’s a Chelation Weekend…

Well, it’s a chelation weekend in the Lowhorn house.  What does that mean exactly?

We found out in the spring that Sean did indeed have high levels of mercury as well as elevated levels of lead. Kelly and I really were not surprised, however, it was good to confirm with a test.

In addition to about five prescription medications, Sean is on many supplements and also uses a chelation cream every other weekend. This is called a “round” and we can get about three rounds out of one $115 bottle of DMSA chelation cream container.

From Friday after therapy until Monday morning before he goes back to therapy Sean has chelation cream applied every three hours. We rotate the spot of where we put it for it to be absorbed into his skin. It has to be applied an hour after and an hour before any sort of medication, supplement or vitamin.  That’s the tricky part…oh and the middle of the night applications can be a little tricky too. 😉 He’s done about 7 or 8 rounds.  We are anticipating continuing for a good year or two.  Our biomedical doctor is hopeful that this will bring words back.  I sure hope so.

He’s on quite a biomedical protocol right now.  It’s pretty expensive and some months we struggle to swing it, but we find a way because we believe in it.  Dr. V was the first doctor that really gave us hope and looked into what was going on on the inside and didn’t just try to medicate him with an anti-psych med.  He was the first doctor to give us hope that we could truly help Sean.  Unfortunately, he is closing his practice in October. We now also see Maria and BioEnergy Medical Center in Ann Arbor.  She is amazing! Sean’s infection level is the best it has been since we first found out he had PANDAS.

We can’t stop now. In fact, we just started CBD oil with him and I think it’s going to be a really good addition to his protocol.

I hope to be able to share some positive and amazing posts soon. Please pray for our little guy!

Sean takes the following medications and supplements.

They are renewed every 4-6 weeks. 

Complex B capsule, B-12 spray, Zinc, Vitamin D3, Vitamin E, Magnesium, Vitamin C, Activated Charcoal, and Melatonin

 

 

Seanny’s Pit Crew…

Like any good family, the people in my family work together, especially when it comes to Sean. I honestly don’t know what I would do if I was still on this journey alone. As they say, it takes a village and much of our “village” lives in our house.

I’m going to paste a recent Facebook post I shared. It gives a little insight into what I’m talking about with our beloved pit crew.

So needless to say, Sean has had a rough day. He fell asleep for a little bit at therapy. Came home and didn’t want to eat or drink like he normally does. He asked to go in the pool, which I let him for about 15 minutes. He then started getting irritable. We came inside, changed and went for a car ride because he asked for one.

While we were driving he started throwing up in the back seat. I pulled into a parking lot and cleaned him up the best I could with napkins from my glovebox. I called Kelly and told him what happened and where we were at.

When we pulled up in the driveway, we were met by Kelly, Emma and Liam waiting for us. They had our designated family barf bowl, towels and the mini carpet cleaner ready to help. They were standing in the rain like a pit crew at the Indy 500 waiting for us. I think Sean just had his after therapy pill without enough food in his stomach. Fortunately, we didn’t have too much of a mess and the pit crew wasn’t necessary. However, I still appreciated the effort. 😊

I’m not going to lie. I’ve been feeling frustrated, weak and tired. But when I turned onto our street and saw them, I was reminded again about how awesome my family really is and how blessed I am.

We work together as a team. Everybody helps with Sean. Not everyone has this blessing.

Please pray for Sean to start feeling much better and pray for a very good night of sleep! We haven’t had an issue with seizures in a few years, but I’m a little nervous about the possibility so please pray for that too. Thank you!💙

The Journey Begins

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Admittedly, I am not a perfect writer. I’m certain that I have run-on sentences, errors in punctuation, and mediocre word choice.  However, I have a story to tell.  I have a journey to share. I am the mom to six “children” (two are actually adults).  Four of those kids are technically my stepchildren, but in my heart they are all just my kids.

My husband Kelly and I officially combined our families nearly five years ago. We have three daughters and three sons. Yep, just like the Brady Bunch.  Our youngest son, Sean is almost ten and is the inspiration behind this blog. Honestly, he’s the inspiration behind a lot in our family.

Sean has autism. Sean has PANDAS too.  But these two labels do not define him.  They make his life a struggle at times, but it’s not who he is.  So who is he then? Sean is such a beautiful boy.  He has a terrific sense of humor.  He has a pretty strong stubborn side to him too.  He has amazing eyes and a dimple which will melt your heart.  Sean is so smart. He’s not smart in the ways that kids are typically “tested” for intelligence, but that doesn’t mean he’s not intelligent.  If you really get to know Sean, he touches your heart in so many ways.  He’s my biggest challenge in life. He’s changed me more than anyone else I’ve ever met. There are days that his behavior makes me want to throw in the towel and just give up.  However, on most days he helps me to stay determined and keeps my fighting spirit alive. He is my heart and I am his voice. I’ve been fighting for him for nearly a decade and I’m not about to stop now–even on the hard days and nights.

Sean is severely affected by autism and PANDAS. So often autism is shown in the media as a movie or television character with just some quirky behavior.  Sean is not Rainman. Sean is not The Good Doctor. Sean doesn’t just have a few quirky character traits. Sean is non-verbal.  Sean has had seizures in the past (most likely from the PANDAS), but they are controlled with medicine. Sean gets really frustrated at times because he can’t communicate with words.  Trust me, he communicates in other ways! Sean is a little boy who works really hard at therapy every single day.  Sean is the youngest in our family (aka number six) and he is very loved.

As a special needs mom, I often feel pretty lonely on this journey. My husband is fantastic and is a true partner, but he’s not a mom, if that makes sense.  It’s not often that I meet another mom that I think can really relate to all of this and truly understand. I belong to multiple FB groups, but there is one in particular in which I can relate the most to and it’s because it’s a group of parents, mainly moms, who have kids similar to Sean. I can vent there. I can empathize.  I can really struggle there and they “get it” pretty well as their children have similar behaviors and struggles.

I want to document our journey, but I also want to connect with other moms who can relate. I want to give hope and encouragement to others. I want to share the truth about this journey.  I hope I’m able to do it all justice…

Good company in a journey makes the way seem shorter. — Izaak Walton