Birthday Boy
It's hard to believe but today is the day of my sweet little boy's 8th birthday. The old adage about time flying is so true and time seems to pass even quicker when you're witnessing a child grow. Sometimes when I am feeling nostalgic for the baby days of the past I close my eyes and relive the first time I saw his little face. I remember looking down when he was handed to me and seeing in the crook of my right arm the sweetest face with the most prominent red lips I had ever seen on a newborn baby. I recall not being able to stop staring at those lips and being fascinated by the softness of his skin, especially on his chubby cheeks. He has mesmerized me since..
Nick isn't your average child but I honestly wouldn't trade who he is for a typically developed one. He is who is and I accept him. I wish communication was easier for him, not for my own needs. He tries and I salute his attempts. Do I hope he will be able to talk more as the years go on? Sure, but if he doesn't I will still love and accept him as I do now. He is a very sensitive, kind boy and his sweet spirit is what sets him apart from others. He has great instincts with people..he seems to have a innate understanding of the needs of others. I can't count how many times he has lifted me up without me showing I needed that kind of support. There was one incident recently when I was having a rough day that really illustrates his sweet side.. I was sitting on the floor in the living room and he came in and took me by the hand, had me sit on the couch so we were eye-to-eye and kissed my forehead. He just knew I was having a bad day and that was his ways of showing his love and concern for me. Seriously, it just doesn't get better than that, folks.
On the last day of school Nick was given a speech devise on loan from his school district. It has a series of panels where PECS (picture exchange communication system) cards are placed. I recorded my voice in each spot so he can use them to indicate what he wants or make a sentence. There is an "I want" PEC on each grid of the machine and he can then use that plus the item that he does want to let us know what he's wanting or needs at that moment. One night I went out to the store for a few minutes and he stayed home with his daddy. For some reason when I left it really bothered him and he cried the whole time. He was asked what he wanted and he grabbed the devise and used it to say " I want more mommy". Naturally I dissolved to tears when I got home and heard that.
Since giving birth to him my life has changed in so many ways.. some good, others not, but the best thing about these past 8 years has been having Nick in my life. He requires major dedication and devotion but none of that has been difficult for me to summon up. He didn't ask to be born nor did he ask to be afflicted with his disorder. I chose to have him and now I owe it to him to do whatever it takes to further his chances of having the best life he can have. He faces challenges each day that I know nothing about and cannot really even relate to. All I can do is my best to help him through those obstacles and be the best I can be for him. He deserves nothing less than that and everything else I can give as well.
He is still asleep but I can't wait until he wakes up so I can smother him with kisses and hugs. Sometimes I still try to put him in the crook of my arm where I first saw him. Naturally he no longer fits but looking down at him in that spot brings me back to the first time I saw him there. I loved him then and I love him about a million times more today.
Happy birthday to my sweet bubba boy
Friday, August 13, 2010
Thursday, August 12, 2010
About the boy..
The last six months have been ones of incredible growth and change for him. Size-wise he's changed so much. He's grown about two inches since the beginning of the year and his once rail-thin little body has begun to fill out a bit also. Vocal ability still eludes him for the most part but he tries so hard each day. The inability to express himself does have a tendency to be expressed in ways that are disruptive at times - tantrums, crying, and things of that nature. These outbursts are hard to handle but very understandable. But.. being the parent I cannot allow him to just vent whenever he wants to. I wish I could say I understand how he does feel but I don't. I have never had the inability to express myself and that is something he deals with constantly. There are times that I would just love to be able to climb inside of his brain for a day and see things in the manner he does. I know that's not possible, but it's definitely something I would do if I could. I often wonder how much doing that would change my perspective on the world around us since I would be seeing things the same things he sees. So many questions come to mind when I think of doing that - would the colors I see somehow be sharper? would sounds appear to be louder? how frustrated would I be to not be able to speak when nearly everyone around me does on a regular basis? I have so many questions and really would give just about anything to be able to understand my child better.
I love to watch him when he isn't aware I am doing so and see how he observes his surroundings. He really fascinates me and I try to see things the way he does with those gorgeous hazel eyes of his. Everything seems to fascinate him and he has many interests. I still am waiting to see what special gift he was blessed with. Many people on the spectrum have something that they are able to do that sets them apart from others. For a while I was convinced that his had to do with numbers; they interested him and amused him as well. His love of the written word in any form has been one constant in his life since he was a baby. Like his mom he adores books and almost always has one or more near him. He really loves the grocery ads as well. Nothing makes him happier than scattering them across the kitchen table and pointing out to me what he likes or having me tell him what the items are. He can also identify things when I ask them what they are with amazing accuracy. Taking him out to places like stores and restaurants can be dicey situations as I never know if something will upset him or his mood will change to the point that being out in public isn't a fun option for either of us or the people we might be around. I still plug away and take him out despite this though. I honestly think that I'd be doing him a disservice if I didn't. He has the same rights as anyone else to be out there.. if he acts up I do my best to take him out of the environment as quickly as possible. I think if I were to avoid taking him out that would send the message to others, and perhaps even Nick, that I am using the fact that there are times when it really is very hard to do that, as an excuse not to. So what if it can be difficult? He's worth all the effort it takes to do anything with and for.. it's as simple as that. Sad to me that others don't seem to get that but that is just how it is.
Nick still shows in some ways that he is still feeling the loss of my mom. The summer she was diagnosed as terminal she made a bear for him at Build-A-Bear that she recorded her voice in for him. I keep the bear on a high shelf but Nick will get down the bear from time to time and cuddle with it, pushing it to hear her voice. My mom was the type of person who helped keep Hallmark in business as she bought cards for nearly every occasion. There is a Halloween card she gave him back in '05 that he seems to really love. He carries it around sometimes and points to her writing, sometimes saying "na" when he does. My mom always did say that he will probably read before he can talk and maybe she was correct. Looking at pictures of her tends to evoke varied responses, depending on his mood it appears. There was one picture in the hallway of her and I that he keep turning over. The area is full of pictures of him and his family but that one particular one was the only one that he would mess with. I'd turn it right-side up and he would do the same thing. Finally he threw it down one day and I asked him if seeing that there upset him and he replied "yes". I had figured that it did bother him by the way he was acting towards it.. I just really wanted him to communicate to me that fact. I'm not sure why that picture of her and I upset him so much but I was glad he was able to convey to me that it did. I often wonder if he feels loss on a different level than the rest of us. The night she passed he was very intuned with me and seemed to know she was gone before I could even tell him. He kept stroking my cheek as I was speaking to him about it and looked me intently in the eyes as well. He is the master of non-verbal communication in my opinion.
I wish I had some insight as to what his future holds, but does any parent really know what is in store for their child? You just do your very best to give them what they need to succeed, teach them the differences between right and wrong, and give them all the love and support they need. Parents of children with special needs are really no different in that respect. What sets us apart from parents of typically developed kids is that we do have to sit back and see our kids struggle more than some other parents witness. That being said I still wouldn't trade any aspect of Nick for a child with more abilities. He is perfect the way he is. Thank God for him.
I love to watch him when he isn't aware I am doing so and see how he observes his surroundings. He really fascinates me and I try to see things the way he does with those gorgeous hazel eyes of his. Everything seems to fascinate him and he has many interests. I still am waiting to see what special gift he was blessed with. Many people on the spectrum have something that they are able to do that sets them apart from others. For a while I was convinced that his had to do with numbers; they interested him and amused him as well. His love of the written word in any form has been one constant in his life since he was a baby. Like his mom he adores books and almost always has one or more near him. He really loves the grocery ads as well. Nothing makes him happier than scattering them across the kitchen table and pointing out to me what he likes or having me tell him what the items are. He can also identify things when I ask them what they are with amazing accuracy. Taking him out to places like stores and restaurants can be dicey situations as I never know if something will upset him or his mood will change to the point that being out in public isn't a fun option for either of us or the people we might be around. I still plug away and take him out despite this though. I honestly think that I'd be doing him a disservice if I didn't. He has the same rights as anyone else to be out there.. if he acts up I do my best to take him out of the environment as quickly as possible. I think if I were to avoid taking him out that would send the message to others, and perhaps even Nick, that I am using the fact that there are times when it really is very hard to do that, as an excuse not to. So what if it can be difficult? He's worth all the effort it takes to do anything with and for.. it's as simple as that. Sad to me that others don't seem to get that but that is just how it is.
Nick still shows in some ways that he is still feeling the loss of my mom. The summer she was diagnosed as terminal she made a bear for him at Build-A-Bear that she recorded her voice in for him. I keep the bear on a high shelf but Nick will get down the bear from time to time and cuddle with it, pushing it to hear her voice. My mom was the type of person who helped keep Hallmark in business as she bought cards for nearly every occasion. There is a Halloween card she gave him back in '05 that he seems to really love. He carries it around sometimes and points to her writing, sometimes saying "na" when he does. My mom always did say that he will probably read before he can talk and maybe she was correct. Looking at pictures of her tends to evoke varied responses, depending on his mood it appears. There was one picture in the hallway of her and I that he keep turning over. The area is full of pictures of him and his family but that one particular one was the only one that he would mess with. I'd turn it right-side up and he would do the same thing. Finally he threw it down one day and I asked him if seeing that there upset him and he replied "yes". I had figured that it did bother him by the way he was acting towards it.. I just really wanted him to communicate to me that fact. I'm not sure why that picture of her and I upset him so much but I was glad he was able to convey to me that it did. I often wonder if he feels loss on a different level than the rest of us. The night she passed he was very intuned with me and seemed to know she was gone before I could even tell him. He kept stroking my cheek as I was speaking to him about it and looked me intently in the eyes as well. He is the master of non-verbal communication in my opinion.
I wish I had some insight as to what his future holds, but does any parent really know what is in store for their child? You just do your very best to give them what they need to succeed, teach them the differences between right and wrong, and give them all the love and support they need. Parents of children with special needs are really no different in that respect. What sets us apart from parents of typically developed kids is that we do have to sit back and see our kids struggle more than some other parents witness. That being said I still wouldn't trade any aspect of Nick for a child with more abilities. He is perfect the way he is. Thank God for him.
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