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*
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.
9 comments:
Let me just say that I understand. My 2 year old was born with heart problems that wasn't corrected until he was 9 months old. Then painful surgery, a long recovery, a lot of time on his back. He's in OT/PT/Speech therapy and he has a teacher that comes to work with him one on one. He's developmentally delayed and is about a year behind. He's also on the autism spectrum. He does not speak, doesn't manipulate toys, won't take/give items and a host of other things. He only likes to be touched and held by me, will only laugh and smile with me and no one else. The Birth to Three program will work with him until he's 3. In November I have to look at what my choices are for a classroom environment for him to give him a leg up. I worry about his future. I keep hoping everyone is wrong about him, that he's just a late bloomer. After all...wouldn't YOU be a little delayed too if you spent almost a year on your back trying to breathe? I just keep loving on him and hoping for the best. Our big "plan" meeting takes place next week. I am starting to dread those meetings too. It's the third one and the goals are STILL the same!
Personally, I hate IEP meetings because of what you alluded to. Do they really show an accurate view of what a child can and cannot do if they continually work on a single item or items? I'm not sure. What I have seen is that sometimes a kid gets lucky and has teachers who are willing to bend over backwards to help him/her be successful, whatever their level. Unfortunately, for every teacher who does this, I'm sure there is another who labels that child as "stupid, slow, etc." and insists that he/she will never be better than they are. I am happy that you work so hard to be an active part of Cam's IEP meetings and trying to get him the help that he needs. He's luckier than a lot of kids whose parents either don't care, or put everything on the schools. Will he ever catch up to his peers? Who knows? I would just keep working with him at home and doing what you're doing as far as therapy goes. He's a great kiddo with a lot of potential, I just hope that the other adults in his life continue to work hard to ensure that he reaches it.
Kim, Thanks for saying I'm a good mama....the teachers at his LAST IEP meeting kept telling me over and over what a good parent I am, and I just didn't understand how someone wouldn't do whatever they could for their kids....ya know?!
IEPs are a PAIN IN THE BUTT!! But I continue to do what I can, and do what I can do! *sigh*
Yes. I know too.
Have you ever read the essay (not sure what to call it) about how having a disabled child is like planning and dreaming and finally taking a trip to Paris and when you get off the plane you find out you are in Holland. If you haven't let me know and I will dig it out for you, it's really beautiful and helps.
Oh and It sounds like your school district is doing IEP's wrong. It should be individualized enough that he can meet the goals. When my mother was advocating for kids (and she passed this information to me, thanks Mom!) in her area she found that a lot of times the school district was being too broad with the goals. A goal of "Cameron will improve his reading skills" (for example) is not individualized and shouldn't be on an IEP. That's the goal for every child in that school district. It should be more like "Cameron will demonstrate phoenimic awareness in x, y & z areas with a proficiency of at least 90%." And then that goal should be broken down into 2 or 3 sub-goals that will help him get to that main goal. You really should look through your copies if you can before his next IEP and if it really is like you say his goals aren't changing, they need to address it. He may not progress at the same level as his peers, but he should have some documentable sucesses by now.
HUGS Mama. Cameron is lucky to have you.
Sketchy, I think I've read that story/essay, but if you have it would you email it to me?? I'd LOVE to read it again, and possibly share it here!
I will have to pull out his IEPs and see what the goals are. It seems like they HAVE been individualized, but pretty broad....ex: Cameron will be able to identify the numbers 1-10 with 80% success. He can do that, but he still forgets...We'll be going over it pretty thoroughly soon tho, so here's hoping for progress! :)
I enjoyed this peek, you didn't sound sorry for yourself, jsut matter of fact.
I think Cam is lucky to have an awesome mom!
I hope all the therapies and whatnot give you results that you and he can both be happy with.
Hugs
I understand what you're going through, and I agree... IEP's are NO FUN. Jazz has been diagnosed with a "communication disorder", and I hope she continues to progress. As parents, we can't help but hope and pray (and fight) for the best for our children. You are a good mom... keep up the good work.
IEP's-- I've been the parent, and one of the teachers... I hate them also. But,m because what parent or teacher wants to be put on teh spot. COuld there be a better way- possibly, however with everything going on it's so hard... I think to the folder in my lock up, and trying to remember who has what is at times very hard. Then, as a parent- to sit in front of 4 people in "charge" of my son's school life. It's like being on trial.
You do teh best you can, and you know what? That *IS* the best.
Oh, my opinion is that we all have "different" children. Everyone is odd, or weird, or different in their on ways. Quirks makes us memorable!
I don't even know how to say this...but I am proud of you. I think that for me it would be really hard to share things on this deep a level with others. It is sometimes difficult to admit that we have trials. You are inherantly a good mom and therefore you can not fathom a child that doesn't have a parent who cares enough to even do the simplest of things. Cam is delayed...by what...2-3 years. I certainly can't determine the future...but at this rate he really will catch up. The gap seems huge now...but if the percentage of delay holds, when he is 30 he will be close to 25 developmentally right;) ! Just NEVER EVER give up on him!
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