Out with the Old in with the New!

Since we have been on break from school, things have been great with Colin. This tells me that school is a stress in his life. Even thought he says he likes school, I wonder how much of that is him WANTING to like school. Only time will tell when we head back next week. The first part of our break we went to Florida. Now, I was a little nervous driving down but we had recently driven out west so I knew it wouldn't be too bad, and it wasn't. We stopped in Orlando for 3 days and took the kids to Universal Studios and the Magic Kingdom. Colin did not hold up at Universal. Standing in line was not for him, he became way too impatient. The one time we stood in a pretty long line I was extremely nervous the whole time. I thought we would get to the front and have to bale. I worried about his brother and how that would make him feel. Luckily he managed to make it and we were able to enjoy the ride as a family. But, after that C was done. My husband took him back to the hotel to swim and rest and my oldest and I stayed to ride the roller coasters. It wasn't the fabulous day I'd imagined we all would have together but it worked out for the best. Colin didn't have a major blow up and his brother and I got some quality time together. Here's a wonderful tip for anyone that has a disability. Disney has a Guest Assistance pass. A friend of mine plans Disney vacation and she gave me this tip. Is all I had to do was go to the customer service area and request it. They asked me what my concern was (they didn't really care to know his diagnosis) and I simply told them, "I am concerned he will not be able to handle waiting in line." That was it! We got a pass (they took his picture) and we were able to ride the rides with a minimal wait time. We would go check in at a ride and they would tell us what time to come back. When we got back to the ride we went through the fast pass line which at most rides is only about a 10 minutes wait, if that. We were able to stay together as a family and enjoy the park together. Colin had a great time and he mentioned that he liked Disney better (over Universal). I plan on writing Disney a letter to let them know that I believe the guest assistance card helped us have a great time. I really think without it we would have had a repeat of the experience we had at Universal. I close this last post of 2014 with two things in mind. #1 2015 has got to be a better year for Colin! #2 I'm ready to close the books on 14 and move on to bigger and better things! Happy New Year!

And so it continues

Colin has been having some asthma issues and this cough that won't go away. Over the weekend it got much worse, to the point that he was vomiting because he was coughing so hard. So, I took him to Urgent Care. They took an x-ray of his lungs to see if it was pneumonia (it was not). But, in the meantime, they found a spot on his lung. Sigh.

Most people would freak out. "But, not I" says the mother hen who has been through this a gazillion times. Ok, not a gazillion but enough to know not to panic. In fact, these kind of things have come to be more of a nuisance because most of the time it turns out to be nothing. So, it's just another appointment we have to schedule. Which means another day I have to take off of work and another day he misses school.

Fortunately, the urgent care doctor called today to explain what the concern was. Basically, there is a little spot that they are not sure of. They think it could just be due to an infection and want another x-ray in a couple of weeks, after this virus (or whatever he has) has cleared up. Hopefully, it will be gone by then. Again, just another nuisance, another appointment, more time.

And so it continues.......

What breaks my heart the most

I have been preparing myself  the last couple of years for middle school with Colin. At his last 2 IEPs I stressed that my biggest concerns for him were not academic but social. Since I am a teacher, I know how kids can be , especially in middle school.

Everybody loves Colin. Let me rephrase that, everybody over the age of 18, loves Colin. He doesn't have any friends his age and that hurts. Sure, the kids that are in his special ed class could be considered friends and in elementary school, they were. But, I'm not talking about special ed kids.

The general education kids are usually nice to him, I think.  Earlier this year I witnessed an exchange that makes me wonder, especially now in middle school.  Colin really wanted to go to the school's first fun night. I knew it would probably be a good idea for me to volunteer to chaperone the event (and I'm glad I did). While we were waiting for the event to start some 6th grade girls were hanging out together and Colin went up to them to say "Hi". One of the girls said, "Hi" and then looked at her friends and rolled her eyes. Most of the other girls were giving "looks".  My heart sank to my stomach. I knew exactly what those looks meant. I knew because I was that 6th grade girl once.

At first, Colin was all over the place and not paying much attention to me. I had my post and was standing, watching the dance floor. He did come to the dance floor and was bored because he had no friends to hang out with. I think he tried. It only took an hour for him to have a melt down. He came to me with tears in his eyes and wanted to leave. I don't know what happened and my best guess is that nobody was paying attention to him. I sure hope it wasn't because someone was being mean to him. That I will never know.

We always have treated C as if he were a gen ed kid. We had him try all of the sports you normally would with kids. He played soccer for a long time with the gen ed kids. He was in scouts all through elementary. He played basketball.  So why am I hesitant to have him sign up for basketball in middle school? I think you know the answer to that.

I have decided at can't tell him no. I need to let him do it and hope and pray that the kids (and parents) understand. I hope and pray that they will encourage him and cheer him on. Much of his behavior issue has to do with his self esteem. In fact, I would say probably most of it does. So you can understand another reason I am hesitant. If this doesn't go well, it will most certainly escalate things with him.

I really hate that my motto is , " expect the worst and hope for the best."

Random pictures, now that I know how to add them!

Living on the Edge

Today we had our appointment with the Cardiologist. Back when C had his seizure and we were at the ER they did an EKG and found a QT prolongation. My understanding is that is the time between heart beats and his number was on the high side which means he has a longer time between beats. Since we took him off of the med (that was working) that might have caused the seizure, that same med could cause QT prolongation as well. I was hoping that since he is off that med that his rhythms would be at a more normal number and we would be done with the cardiologist. Do you want the good news first or the bad news? Let's do the bad first. His numbers were lower but still in the gray area and the doctor thinks the one behavior med he is on might be the cause. He wants us to see if we can find a different drug and then check with him again in 3 months. Which means that essentially we have to start over on the behavior meds and we have to go back (another appointment).  Ok, so that's the bad news. The good news is that everything else with his heart looks good!

The other bad news is that he is still having angry episodes (although nothing too violent) and in the meantime he is destroying things. Tonight was a rough night. I thought things were going well and then he exploded! Long story short, we managed to escape kicks, punches, bruises and the like however, we need to buy another blind for his bedroom window. It took about 2 hours for him to calm down and finally go to bed.

So I feel as if I am living on the edge, but not in a fun way. It's more of a "I don't know what is going to happen next but good or bad, I've got to go with it!"

This is not a picture from today but a picture from our appointment with the neurologist a few weeks ago.  I'm finally figuring out how to add photos to this blog.  This was getting ready to do an EEG of his brain. Basically, trying to trigger a seizure. 

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.

In this for the long haul......

So this is not going to be a quick fix. We had an appointment with the therapist the other day and basically in a nutshell: we are using meds with the least resistance meaning,low dose,low side effects. There are drugs out there to help us but, it may take some trial and error before we find the perfect one AND this is going to go on through middle and high school.

The therapist is pretty sure that much of his anxiety,aggression,etc. is due to the fact that #1 he is becoming aware of his differences amongst his peers. #2 Puberty. There is a connection in his brain that isn't connecting when it comes to his emotions and reality. He doesn't know what to do with his emotions and he can't articulate his feelings.  Imagine being in a country where you don't speak the language. You are trying to fit in but because you can't speak the language,you don't. Everyone is very pleasant but you are not a part of the group.  That is how I imagine it must feel for C,in a way. As adults,we know how to handle our feelings of loneliness and any other emotion for that matter.  With him,you have to remember that even though he is 11,his mind is more like 7 or 8.

So,finding a way to make it through these teenage years is going to be challenging. But,I feel up to the task!

I also need to change my perspective on things from time to time and stop feeling sorry for myself. A little boy in the community where I teach was just diagnosed with an inoperable brain tumor. He is 4. My heart goes out to this family and the devastation they are facing. I am lucky,my kids are here with me and growing. Even though C is causing some hiccups in our family dynamics,he is mostly a sweet,kind,sensitive,funny boy. You really can't help but love him when you meet him. And for that,I am grateful!

Every Rose has it's Thorn

I took C to soccer practice tonight. I think I mentioned he did Special Olympics for the first time this past year and he met his good friend E. They are so cute together and have a lot in common. Every time we see E,she is such a delight! She has so much energy and she really speaks her mind but,I love that! C adores her so what's not to love?! So E's mom and I were talking and she asked me how things were going with C's meds and all that. I unloaded to her and she also shared that E has been having a hard time lately too (she sometimes hits,etc. when she is upset). I think both of us feel relieved to share with one another because we know we will not judge. I totally get where she is coming from when she tells me stories and the feeling is reciprocated. I have shared my struggles with a few close friends but most people have no idea that my sweet,little boy is so violent. I just don't want people's perception of him to change. When you meet him and know him,he is so,so sweet and caring and very in touch with other's feelings. Ironically,just not his own. I just don't want people to judge him. Ever. That's all.

the last time

So that last post which was dated on Sept. 19th? Ironically,we had a major,major episode THAT night. Probably hours after I wrote that. SO I will spare everyone the details (again,not pretty). Luckily,the psychiatrist was able to get us in the next day and we started a new med. I don't even know what to say,really,except this is not the life I envisioned for myself.

A good start.......

We just finished our 3rd week of school and I have to say,it has gone far better than I thought it would. We had one major,major hiccup which I will talk about in a bit. C has loved school so far and he is doing well with a new school. Way,way better than I ever thought. He seems to like all of his teachers and his classes. I am thrilled that he is going out to some general ed classes. He does all of the electives with the general ed peers and he does science and social studies as well. Although,those two classes he has a teaching assistant that goes with him to help him with the work. It is way too hard but I think it's beneficial for him to be with his gen ed peers as much as possible.

Ok,so the major episode. It happened at the end of the first week. It was the worst violence I have ever seen from him. I really don't want to hash it all out but trust me when I say,it was bad. I ended up with a few bruises and we had some broken dishes and turned over chairs in the end. I got on the phone with the psychiatrist and the psychologist (who are working together) and hopefully between the two of them,we can figure something out. We may have to increase meds or change them completely. Right now,things are stable and we haven't had any problems since that happened.

I often wonder if I did something to cause this. I will never know........

*Disclaimer

* I should have done this a long time ago but for some reason I just thought of it.  I need to make a disclaimer.  These posts are not intended to seem ungrateful,uncaring or in any way complaining.

I don't like to be a negative person and I don't want people to think of me that way. So I think about what I might have been "complaining" about and I know that I am VERY lucky! There are many,many parents out there that (let's be blunt here) have it much worse than I do. They have more medical issues and more intellectual issues than I do. They have much,much more that they deal with on a daily basis. There are also the parents that have a child dealing with cancer or maybe a child that was born,and then died. So I guess what I am saying is that everyone has their struggles. Some are more harsh it seems but we all have our struggles. To think that I am somehow special or unique is not what I want people to think. Nor do I want anyone to think I am complaining or being negative.

I do sometimes wish,however,that my life was just perfect.

Back to the grind......

The other day I was waiting for C at the psychologists office and I was reading a magazine geared towards parents of special needs kids. In an article that I was reading it stated that,due to the high demands of having a special needs child,most mothers of special needs children do not work (outside of the home). Hmmmmm..........

This is my problem. I work. Outside of the home. I am a teacher. I ,sometimes,teach kids similar to my own. I go home to my own child,never knowing what I will get. Sometimes he is calm and cool and the evening goes smoothly. Other times. Well,other times,I am not as lucky. And here's the thing,I NEVER know what I will get. Never. And things can change in an instant,and many times,do.

If I had a crystal ball 15 years ago (when we first started trying to get pregnant) if I had known that I was going to be the parent of a child with NEEDS (let's not call it special right now), If I could have known then how time consuming (among other things) it would be,I never,never,never would have become a teacher. I would have picked a mindless desk job that I could leave at work and just pick up when I returned.

That being said,I am a teacher. I have been going into my classroom to get things ready and yesterday was the day that teachers had to report. Teaching is hard work. In my 18 years of teaching it has gotten more difficult,for a number of reasons. But mostly,it has gotten more and more demanding. Every year I feel like teachers are asked to do more with less. It has created a lot of stress in my life and then of course,add in my special needs kid. Yeah. And have I mentioned that my husband coaches football? If you don't know anything about coaches let me just tell you this-they are never around during the season. So that means I cannot count on my husband for much from mid August through October (let's not even mention if they make the play offs).

Let's hope that C's meds are working when school starts. He is starting a new school (middle school) this year and he is a bit anxious about it. If I flashback to last year when he was having major anxiety,I recall a sobbing child clinging to me for dear life and not wanting me to leave. Do you know how hard it is to rip your child's hands away from you and leave. But wait,then you go to a classroom full of 32 students who NEED you! It just seems a little backwards to me. I am taking care of other children's needs but not my own child.

So my hope is that the meds are working and he is calm,cool and collected. I hope his year is good because then that means my year (at school) will be good. I can focus on my teaching more and not worry about him. I also know I cannot let my guard down either. I need to be prepared for the worst but (obviously) hope for the best. That's all I can do.

To medicate or not to medicate?

As a teacher (and parent),I totally understand why parents don't want to medicate their child if they are having issues at school (be that because of focus or behavior). My child is on all sorts of medication for asthma and colitis,and I don't like that. I am always leary about medication because although it may be helping the problem I often wonder "what are the side effects and what are they doing?"

We started medication for C's behavior issues. We didn't want to but we felt we had no choice. Part of me feels like a failure as a parent. Like I am giving up being a parent and just letting medicine do my job. It's going to take at least 4 weeks for the meds to work. Or for us to truly see any difference. Right now the night time med that we give him seems to be working. We have had few issues at bedtime since starting.

I hope that this doesn't change the personality of my child. I hope that it just makes him happy all of the time. It's been about 2 weeks since we started the meds so hopefully we will start to see some change in his overall mood very soon.

I'm not alone afterall!

Finally,someone who gets it!

So C did Special Olympics this year for the first time (basketball and track). Sidenote: if you have never gone to a Special Olympics event,you should. Anyway,he met a girl there and they instantly became buds. We have gotten together for playdates outside of SO. Yesterday,we met her and her mom at the pool. While the kids were swimming (and having FUN) the mom and I had a chance to talk more than we ever have. After chatting with her and giving her the low down on C's recent behavior issues,I found out that she has gone through almost the exact same issues with her daughter. Everything I said,she TOTALLY understood! It was so nice to finally talk to someone who "gets it". We also had a chance to talk about what it's like to have a child with so many needs and how hard it is to talk to other people about your child because you don't want them to think anything less of your child. Exactly! What a relief it is to know there is someone out there who totally gets it!

One step forward,Two steps back (Have I used this title before?)

     I think I am too hopeful. I always want to believe the best in EVERYTHING! Maybe,I'm just naive. I want to believe that all people are good,that everyone is looking out for someone besides themself,that people's intentions are good. I want to believe that once C gets over a hurdle,he'll never have to jump that hurdle again. Ok,so  it's time to take off my rose colored glasses,I know.
     So we have been seeing a therapist for C's voilent behavior. If I have not blogged about this,in a nut shell-he gets very angry and becomes very violent. So,we have tried a few things and things have been going pretty good. We went on a family vacation and only had one major episode (which is really good) and since we have been home for the last 5-6 days/nights,things have been Bad (with a capital B). We know that SOMETHING is causing this anxiety/anger but trying to figure out what it is,is like trying to find a needle in a haystack. Thank God we see out therapist this week and we are going to talk to her about trying some meds. We did not want to start off with any meds because we thought maybe we could figure this out but it has become apparent to us that we can't do this. I would much rather medicate my kid instead of having him hit,kick,punch,slap me AND call me names,horrible,horrible names. I told my husband that I feel like what an abused wife must feel like except,it's my son AND I can't leave.
        Ok,one more thing. I need to have a pitty party for a minute. My disclaimer: I have only once asked "Why me?" and I have always felt that we were given C for a reason and I have felt so fortunate that he doesn't have anything major going on. All of his needs are very mild compared to other special needs kids I am in contact with. Here's my pity: WHY ME? I can handle just about anything but this,this is too much.

I sure hope we can find meds that work.

The end of the year

It always seems to me that I become aware of stuff at the end of the school year. So C is suppose to be a part of a regular ed classroom for part of the day. I think I have mentioned that the district I teach in is an all inclusion district which means that special ed kids are part of the general ed class FIRST. They go to their special ed class for the areas that they need but do all special classes,lunch,recess,field trips,special programs,etc with the gen ed class. At C's school,that is not the case. His special ed class is a class by itself with it's own specials schedule,lunch,etc. So sometimes he is with the gen ed class for special things,etc but not all the time. So his gen ed class is doing a wax museum that he is not a part of . On a field trip I volunteered to be a chaperone and only had C in a group. The other special ed kids were all by themselves too (with a couple of teaching assistants,but not with any gen ed kids). His reproductive health homework was for me to sign a sheet saying we talked about it. He told me the special ed kids did not need to do it. (I'm not sure if that is his words or what the teacher said). So in a nutshell,I'm pissed.
Here's the thing,I know C is different. I came to that conclusion many years ago. But,seriously,throw me a bone! Let us think that for a minute,he is just like everybody else. Give him a speaking part in the play. He won't be as good as the regular kid but when he is up there,saying his part,he will be a regular kid (to me anyway). Give him the homework everybody else is getting and then wait for my email that says."this homework is too hard." or "he verbally told us the answers and we wrote them down for him." If I volunteer to go on a field trip it is not because I want to spend time alone with my kid (I do that every day) but I want to see how he interacts with his peers but most importantly how they interact with him.
I am having a hard time understanding how people can not see this the way I do. What is so hard about knowing that someone is "behind" or "not up to par with their peers" which is fine because we are all at different levels in our abilities. What is so hard about understanding that everybody has FEELINGS? and that when they are excluded in any way,shape,or form they feel bad. What is so hard about that?

Two steps forward,one step back

We have come along way since the last few posts. We have made some great progress with C's behavior at home. Bedtime has become more structured,yet calmer. The angry outbursts have been minimal and if he does start to show anger,he has been able to pull himself together.

Being the parent of a child with special needs you should know better to let your guard down. But,I did. I started to think maybe we would never see his angry side again. But,I was wrong. It came out the other night at bedtime and it was violent. We got away with only a few scratches and nothing was broken in the process,so I guess THAT is an improvement. I understand that the anxiety and anger may never go away. I do hope that we will be able to teach him how to manage and control his emotions without hurting himself or others. We are making progress though,and this I have to remember.

Calmness.....

So things have been pretty calm this past week. Nothing out of the ordinary and so it makes me wonder when C will blow. He is off from school for the week and it makes me wonder how things will go when he isn't in school. I do think that his behavior at home stems from what is going on at school. So it will be interesting to see how a week of no school plays into his behavior at home. SO far,bedtime has been great. No major issues at all. I hope this means we are turning a corner but I can't let my guard down just yet.

I knew there was a reason I wanted him to stay little forever

When Colin was younger,like 5 or 6,even 7 and 8,he was the sweetest,cutest,kindest kid around. Let me rephrase that,he is still sweet BUT...... Flash forward,he is 11 now. The past year (or maybe more) has been hell. His behavior has changed and he all of a sudden has these behavior issues,that even I can't explain. I do think it is probably a combination of things and I do know that my husband and I (both are TEACHERS for crying out loud) tried several of our own techniques before we finally resorted to therapy. In hind sight,we probably should have gone sooner but we are both teachers and had years of experience dealing with problem children. So my frustration got the best of me and we decided to seek outside help. Ok,so his behavior? Well,let me just say there are too many things going on. He is violent (although that has gotten better since getting help),he swears,he throws (and breaks) things,he slams doors,he yells,and he has told me (more than once) he hates me or wants to kill me. He seems to have some real real anxiety with ME. He has always been very needy and clingy with me and he still is. BUT,he also gets very mad at me (for no apparent reason at times). So that is basically,what is happening with his behavior,in a nutshell. So tonight. Tonight. Tonight was the first time I realized,that I LOVE him but I don't like him. I really don't like him. I mean,I don't want to be here at bedtime anymore (bedtime is USUALLY when the behavior occurs). I don't want to be around him and frankly,right now,I can't stand him. His behavior can be verbally and mentally abusive and tonight I just had enough. I don't know if any mother has ever felt that about their own kid (please tell me there is someone who has?) But,honestly,I feel like a complete failure as a parent. I can handle the cognitive issues,the speech delays,the motor skill problems. I can handle his non-threatening health issues (of which there are several). BUT,BUT I cannot handle these behavior issues of him being Jekkel and Hyde. You never,never know what you are going to get and you are always walking on egg shells. SO,don't feel bad for me,just pray!

Frustrating seems to be the key word here

Ok,so I haven't been on top of my blogging game here. I don't know how people do this everyday. So,yes it's been a while since I have blogged. I guess my purpose for trying to do this blog is so that maybe others would see it and realize they are not alone. What I mean by this is, When you are a parent of a kid with ANY challenges,life is not easy,or fun,or relaxing,or calm,or relaxing,did I mention fun? And here's the thing,you feel like you are alone because most of your friends are people with "normal" kids. That's not to say that the parents of your "special" child are not in this with you. They are and they totally get it. You do form a special bond with those parents because they DO "get it". What I'm talking about is the friends that you go to lunch with or for a girls night out. The friends you regularly work out with or hang out with at parties. The friends you talk to or text on the phone regularly. At least in my case,all of these friends have "normal" kids. So I guess what I hope is that those parents that are feeling lost,or hopeless and feel like nobody else could possibly know what they are going through,I GET IT. There are a ton of people that do know what you are going through and they understand. It's just that,I'm sorry to say,you probably don't know who they are. That sucks,doesn't it? So just know that you are not alone,even though you feel like it. Find those parents in your area that have special needs kids,meet them,get to know them. Once you talk to them you will feel SO much better and you will feel normal. If all else fails,read my blog (if I keep this up) and find some comfort in the fact that you are not alone in this world of raising a child with special needs or challenges that most kids don't have to face. and stay tuned for my next post.....