Life with a "Different" Child

Thinking about my life, I don't think people really understand what I go through on a daily basis. By no means am I trying to demean anyone who has a child that is SEVERELY disabled, I just want to let you know what MY life is like with a child that is just....well, different.

Cameron, on the outside, looks like a completely healthy, normal first grader. The only CLUE someone MIGHT have is his glasses, but now a days, many kids have glasses. BUT once you stop to get to know Cam, you can see that he's just a little different.

His speech is a HUGE thing! He still is very hard to understand if you don't know his "Cam speak." He will try to ask for something new, and I, as his mama, can't always understand him. He's been known to get really frustrated asking me for something. He'll continue to mumble the same thing over and over until finally, in frustration, he explains it to me. Because he has problems articulating his speech, he has in-community (meaning NOT in school) speech therapy that he goes to EVERY week. Since putting him into regular speech therapy, he's DEFINITELY improved, but he's still really, really hard to understand! It's something that I don't know if he'll EVER have to stop doing.

Cameron is also VERY clumsy. I love how fun he can be, but if he runs, dances, or sometimes just walking, he can fall over nothing. His run isn't even very coordinated. Last year when the Kindergarten teacher would let the kids out for the day, she'd stand at the front of the field, let the kids look to the back where the parents were supposed to be, and let them run to their various rides. Cam would invariably start out running at the same time as the other kids, but be one of the last kids to the fence. I'm sure physical therapy would help him out, but in order to get him IN physical therapy, he needs a prescription from his doctor....and I figure since he's SO close to his yearly annual physical anyway, it can wait. But he has had physical therapy (or PT) in-school in the past.

Cameron is also a very easily frustrated child. If he doesn't understand something instantly, he will get SO frustrated that he gives up completely or will sit back and cry! It breaks my heart that he is so easily frustrated. Today before he left for school, he pulled out this little shoe tying thing that we bought a long time ago. I was trying to show him how to make a bow, but his mind couldn't grasp what I was trying to tell him, so he threw the shoe at me (luckily it's only cardboard), took off his back pack, and went to the stairs yelling!! Unfortunately, I didn't handle his fit appropriately and had an angry yelling fit.....

He also has problems with his fine-motor skills. To help him in THIS area, he has occupational therapy (OT) in and out of school weekly. You may be asking yourself, "What kind of occupation does a CHILD have?" The occupation of a child is BEING a child, running, catching, doing puzzles, coloring, cutting, all the things that kids do. Cam's been in OT since he turned one. I tell him he's going to be "playing" with whoever is his therapist at the time, and he accepts it. OT has been SO good for him, but it's so hard to find a time when he can do it that he won't be too grumpy with Mr. Therapist.

Cam is also an only child, and because of this he's socially awkward. I remember one time last year when I went to help out in his classroom, he walked up to one boy, who was very sweet, and he tapped this boy on his shoulder and said, "C, will you be my friend?" This boy looked at me with HUGE eyes, almost as if he were asking me, "Do I HAVE to say yes?!" My child just doesn't understand that if you're "friends" you don't have to ask....

Because of his slower tendencies he's been put into DACC. This is supposed to teach him at a MUCH slower pace the things that other first-graders are learning, but what he brings home from school is almost a step BACKWARD from what he learned in KINDERGARTEN!! I don't know why, but will find out this week when I go to his IEP meeting. People with kids in the special ed programs KNOW about IEPs, but regular, healthy, NORMAL kids don't have these. IEPs are Individual Education Plans. Cam's annual update for his IEP is this Thursday. It's not very fun for parents OR teachers!! It's a meeting where EVERYONE involved in Cam's education (from parents to teachers to therapists, even to the principal *gag*) meet and discuss his needs for the upcoming year, and what goals will help him accomplish those needs. Then he's supposed to be evaluated every few months to see that those needs are being met. In theory it's WONDERFUL, but in reality, it doesn't always get addressed. Looking at his IEP, I'm SURE he's had the same goals for 3 years.....and he's still "working on them...."

Because of his NF1 status, we also have the "fun" of going once a year to Salt Lake for annual genetics check-ups. They basically make sure that he's not regressing and that he's getting the helps that he needs. And now, we also have the added pleasure of MRIs! Since finding out that he DOES have some internal tumors, we need to keep a close eye on them to make sure that they don't grow, or change in anyway. He is always put to sleep for this procedure, and THAT is never easy! Needles freak the child out!

Cameron is also mentally a few years behind his peers. We've done testing with the school and with the Learning Center and found in his last test that mentally, Cameron is 4 years 10 months old. So anything that an almost 5 year old does, finds funny, or entertaining is what Cameron is into. The boy has just recently fallen in love with Little Einsteins, Blues Clues, and those kinds of little kid shows. He recently has also picked up on jokes. He thinks he can tell a funny knock-knock, but usually, it's so off-the-wall that we laugh anyway.

An example:

Cameron: "Knock knock..."

Me: "Who's there?"

Cameron: "Cameron"

Me: "Cameron Who?"
Cameron: *fit of hysterical giggles*

I love my son, don't get me wrong, but there are times when I wonder if someday he'll ever catch up with his peers. Will he ever be in a "normal" classroom, or will he be stuck in the special ed cycle his whole life?? Will he be a "normal" adult?? Or will he have to stay with us his whole life because he just "doesn't get it?" When someone says that therapy is like an inoculation, "Short-term and intense so that it will prevent other delays." When will it be ending?? Where is the short-term aspect of this??

My life is not frustrating by any means, but it is difficult at times. He has so many programs that he's apart of, how can he ever get through all of this? If he ever lost his Medicaid, how would WE make it?

This is just a glimpse into my life. Please, do NOT feel sorry for me, because this is normal for us. We know of no other way. Just understand that there are others out there, who may look like they're frazzled and have no apparent reason for it....it may just be that they have a "different" child or "different" situation.