If it ain't broke...

Welcome back to Junior High!

I am feeling awkward lately. It's like being back in 7th grade all over again. I just don't seem to fit in anywhere. I thought I had reached a point in my life when I could find my place in the world, but lately I've doubted my own maturity.

I have special needs children. That sets me apart from most of the others in the online communities I belong to. I am currently a member of 2 online parenting message boards, and although I love the women I know there dearly, I feel so different from them, who go about their lives with little more thought for their children's futures than how much to put in the college fund this month, and whether their son/daughter will want Dora or Blue's Clues for the theme of their next birthday party. I spend most of every day contemplating the benefits of occupational therapy, and whether my youngest really needs speech therapy. I am among them, and they accept me, and support my struggles, but I am not really the same mother they are.

And yet, my children’s needs are not the same as other children with special needs. I know we are extremely fortunate that their needs are small. In the greater picture, they are a mere inconvenience. My oldest is Hard of Hearing. And yet, his hearing loss is merely a Profound Unilateral loss. I don’t fit in with the parents of other Deaf and HH kids, because my son can hear. He can hear pretty well, as a matter of fact. There are a few situations in which he is a bit disadvantaged, sure, but we are aware of this, and can work around it. Again, the parents have been very kind, offering support and advice whenever they can, but I don’t really belong to their circle. Reed has recently been diagnosed with PDD-NOS, but his is a mild case, from what I’ve been able to gather through my research into the disorder. To say he’s high functioning is almost an understatement. He needs more attention than I know how to give, and he is a bit uncomfortable in his own skin some days, but he’s mostly a normal 5 year old, who loves riding his bike, playing with his little brother and going to Kindergarten. I do not fit in with the parents of those children who require months of work to look you in the eye (although he does have trouble with eye contact), or say your name. I most definitely do not fit in with those parents. My youngest has his own set of issues, mostly stemming from a sensory issue with food. He doesn’t like the feel of food, so he won’t eat it. You know how they say no child will voluntarily starve? Well, that’s not entirely true. Owen was losing weight, missing milestones, and just generally failing to thrive. As evidence of the inexperience of the other moms with matters of this nature, everyone assured me “He’s going to be fine, he’s just burning it off quickly because he’s so active.” I wish I could believe them, but a trip to the pediatrician confirmed my fears. Owen was not growing. After a battery of tests, that included skull x-rays and MRI, it was determined that his poor eating was to blame. His poor body was working so hard just to keep functioning, that it had stopped growing altogether. Now that he’s getting his nutrition supplemented, he’s make huge progress, including a 20% weight gain in the last 3 months alone. He’s making progress with milestones too, but is still somewhat delayed. He’s having his speech evaluated this week, and I’m a bit nervous. I shouldn’t be. Reed went through speech therapy, and it did wonders for him. It really shouldn’t be a big deal, but it’s just so hard to hear that your child isn’t “normal”. I desperately want to hear that he’s making great progress and will catch up on his own in time.

*sigh* What’s a girl to do? I’m open to suggestions if you have any. I never did figure this out back in Junior High, and I’m not making much progress at it this time around either.

posted by Steph at 8:15 PM