Transitions

One thing,if I am going to blog,I think I need to do it more often than once a month! I just haven't had time but I certainly have a lot to talk about. School is out for the summer. Usually,transitions are tough for Colin. So far,so good. He has asked a lot of questions about school-when do we go back? Are we done?- I think talking about our summer plans plus the fact that we are getting a puppy this summer,have helped to alleviate the stress he must feel when there is a big change. I also wonder if my stress level plays a role in how he reacts to things. Ok,I know my stress level has a lot to do with how he reacts. Since I am off for the summer too,maybe my lack of stress has something to do with how well the transition is going. I know if I didn't have the stress related to my work,that I would be a better parent. I tend to bring the stress home with me. It really makes me wish I didn't have to work so I could be a more relaxed mom. Maybe I need to focus on this come fall. Somehow,if I can remain stress free,maybe it will help all of us with the transition. I'll work on that over the summer!

It's just exhausting

No doubt being a parent is exhausting. Being a special needs parent,well let's just say it can be down right crippling. Colin has some issues (really? that's right he is special needs for a reason!) Generally,his behavior is "normal". His teachers report he has no behavior issues at school,ever. I think they would be shocked to know that he has lots of behavior issues at home. I don't know if he holds it all in at school and then explodes at home or if we are just bad parents. I would like to think we are pretty good parents since our first son has (so far) turned out just fine. Here's something really interesting though....When you are a parent you tend to get lots of advice from other seasoned parents on what to do in any given situation. People are not short on advice let me tell you. When you are a parent of a special needs child and you are asking (begging) for advice on what to do in any given situation,you get silence. This I know from experience. I have asked many people for help with Colin's behavior problems,nobody really knows what to tell me. We actually went to a family therapist for a bit. As helpful as she tried to be,I felt she didn't have experience with cognitively impaired children,so we stopped going to her. Things are definitely better this year vs. last year. We have recognized some of the signs that Colin is breaking down but we are not there 100% yet. For example,we know when he gets tired he is bound to have some sort of issue. Staying up late for him is not an option or we will pay for it at 10:00 when we try to put him to bed. Sometimes we won't pay for it until the next day.Also,if he is hungry he gets very agitated. So,we let him eat whenever he wants to. (Luckily he is really skinny!)As much as we can predict (and sometimes stop) his meltdowns or rages,we still call him a loose cannon. One minute he can be in the best mood and then you say or do something (can't find a pattern to this yet) and he explodes. When he explodes,there isn't much you can do except ride it out. I have found that reasoning does NOT work and trying to make him happy doesn't work,certainly arguing or yelling doesn't work either! Ignoring him (sometimes) maddens him but talking to him annoys him. It can be a vicious cycle. One thing I do know for certain,MOST of the time Colin is as sweet as pie. So I enjoy those pie moments all the time. I brace myself when the rollercoaster starts because I never know when we will get off. I guess it just part of parenting,special needs or not.

I hate days like this

I hate days like this when I feel bad about having a special ed kid. And then I feel guilty for feeling bad about having a special ed kid. Here's what happened today that made me sad but really more just angry. I went on a field trip with Colin. Should be fun,right? Well,when you go with the whole 3rd grade and the 3rd grade special ed kids come along and they are segregated the whole time,well let's just say,it sucks! Colin is suppose to be mainstreamed into the general ed classroom (I thought a little bit every day,but I found out it only happens 1-2 times per week. This is another post at another time.) He is suppose to feel like he is part of the class by having his name on the birthday poster,having a seat in the room,attending parties,etc. NONE of this is happening. When we arrived at our field trip destination,Colin was not assigned to be with any of the general ed kids in a group. The teacher seemed very put off with this suggestion from the teaching assistant that came on the trip. So all of the special ed kids (parents and teaching assistants) made our own group and hung out together. The general ed kids,teachers,parents hardly noticed us and never acknowledged us. At the end of the trip the 3rd grade class (that Colin is suppose to be a "part" of) got together for a group picture while the special ed kids sat off to the side. Not one person even thought to have "those" kids be part of the picture. It saddened me and angered me. And it made me,just for a minute,feel sorry for myself. But then I felt sorry for Colin,being treated like such an outsider. More importantly I feel sorry for those general ed kids (and parents and teachers) that are not seeing the opportunity to know some really special kids,one of them being mine.

A Reason I LOVE him.....

When our family was discussing what we would do if we happen to win the Mega Millions Jackpot (600 million dollars) I told the kids that I would buy them anything they wanted. My oldest,Blake,had to think about it. He wanted it to be something good. When I asked Colin what he wanted (and I said,again,he could have ANYTHING) he said,"Cookies!"and "Ice Cream!" and I said,'Colin you can have all of the cookies and ice cream you want every day of your life." The thing about him is,that he meant it. He didn't want any material things,nothing fancy or flashy. Not because he wouldn't want those things but because those things do not make him happy (not like cookies and ice cream do!)I think because of his cognitive ability,those things are not even in his realm of thought. I don't think they ever will be and that is one thing I love about him.

When did we know?

I've been asked that question before,When did we know Colin was "different" or in one case "something was wrong with him"? I remember one mom from daycare (Colin was probably 2 years old at the time) said to me (and I quote) "So,what IS wrong with him?" Those were her exact words and I will never forget them,or her, for as long as I live. My reply to her,"Nothing is wrong with him." But then (you will not believe this) she said,"Well,does he have Downs or is there a name for it?" OK,really? By this point I was furious,sad,angry,and just plain appalled. I think I went home and cried. Ok so,when did we know? I think when I look back I knew from the very beginning. My gut told me something wasn't right. However,it wasn't until after he turned a year old (and some months) that I finally accepted something was not quite right. Colin was always very large for his age. He really was a huge,rolly polly baby and the Dr. always said he was in the 99th percentile. We always just chalked off his inability to roll over,sit up,crawl,walk,etc.,etc.etc. because he was just too fat to be able to do it when he should. He was always significantly behind his same age peers for all of the milestones. When he wasn't walking at 14 months (and not even close to it) we called Early-On,the early childhood intervention program. They evaluated him and low and behold not only was he behind in his gross motor skills (which is why we called) but he was behind in ALL areas-speech,cognitive and fine motor skills. Talk about a double (triple) whammy! Of course we started him on therapy right away. When he turned 3 he qualified for the ECDD(Early Childhood Developmentally Delayed) pre school program through the school district. He rode a school bus and attended 4 mornings a week.

Shall I start at the beginning?

Right now the only person I know that is reading this blog is Megan. (You will hear more about her later). But,I figured I should give the people who are (some day) reading this,a little background on Colin. This kid has been high maintenance since week 18 in the womb. At our "routine" ultrasound,the tech noticed something with his heart. (We did not know that he was a boy and did not find out until he was born). The tech got on the phone with the docs at St. Joe's hospital (they could see the monitor). When she got off the phone she explained that what she was seeing was that his heart was not in the correct location (it was turned around and tilted). She immediately sent us to the hospital so the docs there could take a look. I don't really remember what happened at that point. I just remembered I was very scared for most of my pregnancy. We had SEVERAL ultrasounds at the UM pediatrics heart clinic (probably not the correct name but close enough). At every ultrasound his heart was working the way it was suppose to but they always commented at how BIG he was. At 25 weeks he measured like he was at 27 weeks,etc. At this point I have to say that I was a complete basket case however,nobody would have ever known. I held it together SO well. But, deep down inside I was so worried that something would be wrong with his heart and he would have to have open heart surgery when he was born or he would die. Every time we had an ultrasound they said his heart was working the way it should. So,after the upteenth ultrasound,I began to relax a little. The rest of the pregnancy was pretty uneventful. I gave birth to a whopping 9 lb. 1 oz 22 in. baby boy in 2003.He was exactly 2 pounds and one inch bigger than his BIG 2 year old brother when he was born. To this day,Colin is pretty big for his age. Although he has lost much of the fat and has stretched out. His Big brother (by 2 years,remember) is still taller than him but only by one inch. Someday Colin will be taller than his big brother I am sure.

Where do I begin?

I just finished reading a book called "That Went Well" by Terrell Harris Dougan. The author tells the story of growing up with her mentally disabled sister. The story continues into adulthood where the author is left to care for her sister after her parents have passed on. Some of her stories made me laugh out loud but many of them made my heart ache. I know the stories all too well. The stories are similar to many of my stories of my son,Colin. So many times I was taken back to a time when Colin freaked out in school because the noise bothered his ears or when his routine was disrupted and the only way he knew how to handle it was to have a full blown temper tantrum (sometimes in public). Oh yes,I know those stories all too well. I loved that book because I could totally relate and I felt like there is someone out there who knows exactly how I feel. It also made me think of Blake,my "general ed" "typically developing" "normal" son. You see,he is the one who will have the burden of caring for his brother when my husband and I are gone. One reason I did not have a 3rd child is because I didn't think I could handle another kid when I have a son with special needs. OR "what if" I had another special needs child. Two would be too much to handle. After reading this book I now wish I would have had that 3rd child so Blake would not be the only one responsible for his brother later in his adult life. I do know this....I was given my Colin for a reason. He has something to do with my purpose in life. I want to help other families who might be struggling with a special needs child. How? that I do not know. Sometimes I think it's just nice to know you are not alone.