Ten Things this Special Needs Mom is Thankful for

#10 I am thankful I have decent health insurance. Even though the co pays have gone up and I have to pay more per month, it is still better than most people have.

#9 I am thankful for advances in medicine and medical technology. Without all of the supports in place to help us, I am not sure how we would get by.

#8 I am thankful for my son's teachers who have gotten him this far academically.

#7 I am thankful my child's needs are not worse.

#6 I am thankful for the family that supports us.

#5 I am thankful for friends that help us.

#4 I am thankful that my oldest son is learning much more than a typical kid by having a brother with special needs. I am certain this will serve him well as an adult.

#3 I am thankful that no matter what, my husband always has my back.

#2 I am thankful for my boys, all 3 of them.

#1 I am thankful for a son with special needs. He has forced me to become a voice and he has made me stronger than I ever thought I was.

The Cat is Out!

     So if I am an open book my husband is the exact opposite. He is one of those diaries I had as a kid with a lock and key. The key is almost always misplaced so it's hard to open up the diary. Although , those things are so cheap you can use a butter knife to pry it open if you have to.
     He is insanely private. He is not into social media AT ALL, and of course I am on Facebook every,  single day. I think this makes him nervous sometimes because every once in a while he will stand over my shoulder and read my posts. I have learned  though, not to put anything too crazy out there. And then, I shared my blog. I still don't know exactly what possessed me to do it.
     So when I started this blog a couple of years ago, it was completely private. I thought of it as nothing more than a journal that I wrote in (which I do often). I was just playing around and thought instead of handwriting my thoughts, let's blog them! So I didn't share this with anyone, even my husband. Fast forward two or so years, I shared my blog.
     I had to tell my husband about my blog and that I shared it. I'm not sure why I was so nervous , I guess except for that fact that he is so insanely private. Here's the thing, I don't ever name him or the kids (except for when I went back and read the beginning of my blog, I do use C's name.)  The reality is that anybody who has read my blog, knows us and is a friend. If they don't know us and they are not a friend, then who cares? But, I have learned that our friends care about us and they care about Colin. If they don't, then so be it. My husband would say, "It's nobody's business." You're right Honey, it's not. At the same time, it is nice to know who supports us, who our friends are and who doesn't really give a shit about any of this because they are our friends.
     So, I told my husband about my blog. His reaction was pretty much what I thought and I don't know why I thought he'd be mad at me (he's not). I emailed him the link so he could read it but suggested he start from the very beginning. I'm curious to know what he thinks. Honey?

My Life is an Open Book

     I am not a private person. I don't have skeletons in my closet. I don't hide who I am. I also don't pretend to be something I am not. Another thing, I wear my emotions on my sleeve. This makes it very hard for me to lie. So I'm pretty honest, most of the time.
     Sharing this blog has done many things I never thought it could. First and foremost it has released a whole lot of baggage that I have been holding up inside. I cannot tell you how freeing it is to not feel like I am hiding something. Not that I was ever hiding anything. Plenty of people knew what was happening and the struggles we were facing with C. But now people that I see every day or friends that I don't see often enough know what is going on and the struggles we face. Somehow, it makes it easier to go through knowing that my colleagues may see me at work and see I am having a bad day or they might understand why I seemed short with them. At least they will have a better understanding if I am not my happy self.
     The other thing sharing this blog has done is bring out of the woodwork who my true friends are. I pretty much know that most of my friends are true friends because they have stuck with me this long! There's some saying about you find out who your true friends are when you are in crisis. Those are the friends that come to you, seeing you are in need. It can be a small gesture like sending an email or text saying, "Hey, I'm thinking about you." Or something more grand like sending a small gift in the mail . Plus all of the in betweens. I have heard from friends near and far with words of encouragement, offers of help, or just a "you are loved" message. It is very comforting to know these people are still my friend. I know we always say to our friends," I'm here if you need me, please don't hesitate to ask for help." But, I believe true friends are the ones that don't wait for you to ask for help, they just know you need it and BAM! there they are.  Thank you to my friends that have shown their face since I introduced my blog. The emails, texts, phone calls, fb posts,etc. are all I really ever needed to give me the strength to carry on. And quite honestly, it has helped me know which friends I will call first. Hint: wine. As they say "any excuse to drink wine is a good excuse!" Get your wine openers ready friends!

Roller coaster

     Whenever C goes through a health crisis, I go through my own crisis. At first, I always think the worst. "What if it's cancer....." that always is my first thought. So I usually get myself all worked up for nothing. The weird thing is though, I want it to be something (just not cancer). So before our appointment with neurology today, I wanted them to find something wrong with him (just not cancer). I won't go into the boring details leading up to the visit with the neurologist but basically, there is nothing. At least nothing that anyone can explain. I will be honest, the doctor was not very helpful, at all. I had a million questions about this seizure episode, his erratic behavior, his frequent headaches. Nothing. She could tell me nothing. She didn't even have advice to give me. And she wants a follow up appointment and is referring us to Genetics because? Not sure. She didn't explain that well either. We've been to Genetics and they were not helpful and I think I will cancel that follow up appointment (unless C has another episode).
     Luckily, I have a great pediatrician. I know he will give me sound advice. I have a call into the psychiatrist to see if we can't try a different medicine similar to the one we took him off. I hope that the QT prolongation they found in the ER has resolved itself by the time we go to see the cardiologist. Again, that may have been caused by the behavior med we took him off.
     Up and down, up and down! Just like riding on a roller coaster........

Is this my Karma?

     They say Karma is a bitch. I believe that. I believe there is a little old lady, named Karma, watching over us and keeping notes. So when we do something bad, she jots it down, for future reference. So I wonder if Karma is trying to teach me a lesson.
     Way back when I began teaching, and before I had kids, I had a student that was BAD, with a capital B! He was labeled as ODD (Oppositional Defiant Disorder), yes there is such a thing. I witnessed his behavior on many occasions with his parents (mostly his dad). Every single time I thought, " Boy, that kid is smart! He's got his dad wrapped around his finger and totally giving in to him!" Honestly, I couldn't believe these parent LET their child act this way. They were weak and they had no control. I also couldn't believe they couldn't find a medicine for him! I mean, come on, really? There are meds for everything! If any of my teaching friends are reading this, I want you to tell me which student this is I am talking about. I bet most of you know!
     So now, I feel bad. I feel bad for thinking this about this boy and his family. I remember at conferences, the mother was depleted. She didn't say much ( I mean, what could she say?) I was just amazed that she didn't seem to care. Both parents, actually, were depleted, washed out, spent, done. I think back to this and I wish I could go back in time. I wish I knew then, what I know now.
      I wonder what became of that family? I wonder how this student turned out. I think he would be in college now. I had his older brother too. I wonder if he is ok. I wonder. I wonder if this is Karma's way of saying, " See, not everything is what it seems."

Let's pretend this never happened

     If any of my friends go to work tomorrow and your colleagues tell you about a mother with her 2 boys at the mall, that was me. Otherwise, let's pretend this never happened.
     C was sort of in a volatile mood this morning. I needed him to go to the grocery store with me and he didn't want to. We left with him being a crab and I was nervous as to how this would go. I figured I would go in and get just what I needed and then if things were going well, I could get other things. Well, $350 later and an Icee should tell you that things went well, really well in fact. He helped me unload all of the groceries, picked up something in the yard, and told me I was the best mom ever. He was being extremely cooperative and I made sure to tell him that. I told him I loved it when he was such a good helper and it made me so happy. He told me he liked it when I was happy.
     C's older brother needs new clothes. In fact, he doesn't have any pants that fit him and it is going to be in the 20's this week. SO after unloading the groceries, I told C we were going to the mall to get his brother some new clothes. First, we would be going to eat lunch though, as I knew both boys were hungry.
     We were standing in line to order food and C started getting chippy. In fact, he was starting to get nasty. I'm sure it was a combination of being hungry and not wanting to go to the food joint we picked. So, I took him out into the corridor to talk to him and that is when everything went south, fast. He started grabbing me, pulling my hair, pulling my clothes,etc. So his brother and I managed to get outside. This did not calm him down, in fact, it might have rilled him up even more. We tried to walk away toward our car (which was on the other side of the mall) and he attacked me, in broad daylight, in front of mall customers.  People did not know what to do and a few did approach me to ask if I needed help. A woman had her phone and told me she would call 911 if I said to. The security guard approached and C ran around the corner of the building. Right before this he was yelling at the woman who was going to call 911. I don't remember what he said but I do remember the look in the woman's eyes. His brother kept an eye on him while I talked to the security guard and another man that was trying to help. I explained to the security guard that he was on behavior meds that we had to take him off of because they caused seizures. "So this is what he does when he is not on his meds." I told him. He told me if I need anything to call. The man that was there asked me if he could pray for me and I told him yes. I didn't realize he meant, right now with you. I thought maybe he would pray before he went to bed tonight. So, he stood there with me and prayed. I am not a religious person at all. In fact, I question God, mortality,and spirituality often. Let's put it this way, I don't really know what I believe. But, I will say that having this man pray for me was so comforting, I can't even explain it. And I must say, that the concern of the strangers that wanted to help meant a lot to me. I'm glad to know there are good people out there that would be willing to help a stranger.
     We walked all the way around the mall back to the car and I wish I could say that C was calm and back to himself by this time, but he wasn't. He was better, but not himself. So we made it home and we were still not in the clear. It took a good hour for him to come back to himself.
     I'm not even going to talk about the embarrassment that I felt with these strangers or how this has affected his brother. I worry about his brother all of the time. I think about what others think. I'm going to just (kind of) pretend this never happened.

One step forward, two steps back.

      Back when C started having health issues, a long, long time ago, nothing was very cut and dry.  It always felt as if there was one set back after another. For example, after having diarrhea for 6 weeks, we finally found out he had Ulcerative Colitis. Not life threatening, but manageable with meds. Whew! So of course, the medicine we tried, he had an allergic reaction to. So we had to go back to square one. That same year he got hit in the eye with a baseball and had blood in his tears. And last but not least, he broke his foot. I should know better then to let my guard down and think we are sailing on smooth waters. But, I do. And then, something happens.
     So, C had a seizure at school last week. He has never had one (as far as we know). We spent some time in the ER but not much came from that. So we have an appointment with neurology. We also have an appointment with cardiology because they found a QT prolongation of his heart. The clincher is this, the one behavior med that I actually thought was doing it's job, well, that could cause seizures and the heart thing. Yup. So we had to take him off of that med for the time being. So as far as his behavior is concerned, I feel we are back to square 2 (not 1 because we are still on an anxiety drug).  So far we have not had any MAJOR (red zone) issues since being off the med for a little over a week. I'm holding my breath and keeping my fingers crossed.
      As for the other issues, this is not new to me (having a child with health issues). We've done this before and we'll do it again. I do wonder though, "what more could this child possibly go through?" And now I realize that this is normal for us. Having issues (health, behavior, academic,etc.) it is normal for us, this IS our normal. This is our life and this will be our life. No more letting my guard down and thinking it will be smooth sailing from here on out. I don't think that will ever be the case. And if it is,well, then so be it. But, I will never let my guard down again.