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! ❤

 

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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! 

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…

 

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!💙