Is it just me? (Long, but worth it!)

[Ammie25]

My son, Elias was born 13 weeks early, and has a history of DD and Epilepsy. He is 6 years old next week, with his development at about that of a 2-2 1/2 yr old, with some scattered skills (lower and higher.)

He is so much fun, incredibly smart with an amazing memory, he's loving and has such a great sense of humor. My main concerns with him are his S/L Delay and his lack of social skills. All of which, of course, are covered in his Diagnoses and IEP.

I have my highs and lows with him. I mean, on a personal level. At my lowest, I am very self-concious about him. I have expressed these things to my SO of just over a year.  My SO tells me that he understands, and that he does see the things that I am talking about, but he thinks I may be kind of "over-thinking" things. (I am not complaining, just informing)

I agree with him to an extent. But I also know that I am Elias' parent. I am the one that sees every baby step that he takes in his development. I am the one that hears all the medical and developmental jargon at every appt/mtg breaking down his every ability and "disability." So of course, I am extra-sensitive and extra-aware of his abilities.

My SO also tells me that when he's around Elias, he just sees a little boy. This comforts me, because it helps me to realize that not every person in this world (that meets or is around Elias) is going to be scrutinizing his every action and word (or lack thereof) that comes out of his mouth. It's a huge comfort to know that someone who is around Elias often, just sees him as a typical little boy. And at my lowest, it's also a relief. A weight off my shoulders.

I always get very passionate when people talk about Special Needs kids as though their "label" is who they are. (He's an Autistic child as opposed to a child WITH Autism.) Of course, we all know this is entirely untrue.

But I also realize, that Elias, Special Needs and all, makes him who he is. I have younger siblings, who at one point or another, have asked when he's going to "get better" or as my 7 yr old sister says, "be smart like me." I told her that, yes, he is always going to learn and grow, and hopefully, someday, he will be able to talk more. But the way he is, is who he is. I wanted her to understand that she shouldn't expect him to experience any dramatic changes where he is suddenly (her peception of) "normal." Another sister of mine, at one point, would say alot of "what if" questions. "What if he was born on time" implying that he developed typically. I would tell her, "well then he wouldn't be who he is."

I honestly cannot imagine my child being any different. Exactly who he is, is exactly who he should be, and always will be in my heart. I would never ask that he change in any way, outside of the natural growing and learning.

But I got off on a tangent. :) The point I wanted to make by saying that I get very passionate about other peoples "labels" is that I think sometimes, I am my own (and my son's) worst critic. I think that sometimes I get too caught up in all the medical and developmental jargon and forget the little person, the beautiful child, whom I love with all my heart, that makes me smile, laugh and see God's blessings in everyday.

Thanks for listening ladies. Feel free to share.

[peasntatersmom]

This is so beautifully stated..thank you so much for taking the time to share your thoughts and feelings with us tonight.  I have a younger sister who asks nearly every time we talk "Has Jerry said anything yet?"  As if that is the only thing there is to worry about.  My family lives so many miles away and has no contact with him and his daily life, so they cannot relate.  They just don't get it.  It gets lonely sometimes and I wish they could understand, but in the end, the love we share with our children (as Jerry stands here beside me right now smiling and watching the keys as they click), is the most important thing of all, surpassing all those labels, stares, questions, doctors and appointments.  While I sometimes look at him and wonder what he would be like if he were a "typical" 6 yr. old boy who never had a stroke, in my heart I am so very thankful for him and his especially sweet little smile and personality.  I cannot imagine him being anyone other than who he is.  :)

God bless;  

[Ammie25]

Thanks for responding!

I am always mystified (for lack of a better word) by parents of children who were once "typical" and their disability was caused by something traumatic happening.

I know that ultimately, we experience the same things, if through a different process.

My son was born premie, and was "spotted" by therapists when he was 6 months old. Ironically they came by my house to observe my younger sister, and said, "she's fine, let's talk about him." I realize now how much of a blessing it was, that him recieving early services sort of just fell into our lap. Not many children get that opportunity.

Elias has always been the way he is, basically, from the day he was born. I have never known him to be "typical" or "normal."

I think it's really great that you see the blessing in your son, that you are thankful for him. I honestly believe, almost anyone can be blessed with a child. But a higher power specifically chooses special parents for special children.

There is a reason things happen, and the worse they seem, the bigger blessings they bring.

Again, thanks for sharing. :)