If I’m honest…
I would admit that I’ve been in a bit of a funk regarding Sean’s autism/PANDAS journey. I would admit that I haven’t been feeling too hopeful over the last couple of weeks either. I think I do a pretty good job staying positive, but lately it has been a struggle.
I think this is due to a few different factors.
The first being that I haven’t been going to church on a consistent basis since last fall. I’m the kinda girl whose favorite day of the week is Sunday because of church. However, last fall Sean started into a really bad flare of his PANDAS. What that means is his infection level and inflammation were both elevated. He was miserable at home and therapy. Kelly and I were literally beside ourselves trying to make things better for him. It was a pretty helpless feeling and it went on for 3-4 months. He was on a strong antibiotic and steroid burst at one point which made things even worse for him. (I’m going to make a different post to share what and who has been able to help him get on a much better path.) At any rate, church for Sean was definitely out of the question in the fall. Leaving the house with him except out of necessity was pretty much the only thing on our agenda with Sean during those months. It hasn’t changed all that much since then in that respect. He’s going through a pinching, spitting, and incessantly touching people’s faces phase which has made it difficult to too much outside of our house and therapy. Thank goodness for our pool because that keeps him greatly entertained!
A couple of weeks ago, we received notice that our insurance company was only partially approving his ABA therapy. I’m used to the insurance company not wanting to cover the expensive therapies or treatments. The part that felt like a kick to the gut was the fact that they stated the reason for denying full coverage is because he’s not making enough progress. According to the guidelines, he needs to meet 50% of his goals. He met 67% in this time period, but apparently that isn’t enough for BCBS – MESSA. Sean is nearly 10, but is performing at the age of a 3 year old. They expect the gap to be closer. Gee, wouldn’t we all? However, I used to hear that Sean was like a 6 month old, so he has DEFINITELY made progress. I can’t tell you how badly I wish it was more, but I am super proud of how hard he works and how far he has come.
For some reason, this really knocked me down. In addition, the same week we found out that Sean’s amazing neurologist was closing his practice. This is the doctor who diagnosed Sean with PANDAS. This is the doctor who didn’t just try to cover up his symptoms with ADHD medicine or Zoloft. This doctor wanted to dig deeper and did. He looks at the whole child. He is an integrative neurologist who takes insurance and is brilliant. He helped us so much and I was pretty upset to hear the news of the closing and that it was due to health issues for him. This knocked me into feeling even worse.
Sean is adorable. Sean can be very lovable. However, Sean can also be aggressive and difficult too. He surely has a stubbornness about him that may or may not come from me. 😉 Either way, on good days and bad, life with Sean is extremely exhausting as he can’t be left alone and we are constantly cleaning up after him. I am praying that with continued biomedical intervention and daily therapy, life will get easier for him and for us too. His spitting obsession has been pretty disgusting, rivaled only with the poop smearing which he still does from time to time. Like I said in my first entry, I’m keeping this blog real. If I share the real struggles it will make sharing the real triumphs that much sweeter.
So, needless to say, I spent about ten days feeling pretty hopeless and sorry for myself and for Sean too. That’s the longest stretch for me– that I can remember anyway. Even the most positive and faith filled person can feel weak at times. I’m working on leaning on my faith and staying hopeful.
Fortunately, this feeling has passed (I think) and I’m ready to be a Warrior Mom once again!