Labels — 5 Minutes for Special Needs


                               

 

 

Jack met with the developmental psychologist on Tuesday for a few hours. We have been noticing some hard-core aggression along with some other really disturbing “new habits” that have come up in the past few months (for example, he’s taken to not sleeping again, and he’s picked all the nails off his fingers and toes). It was time.

She is amazing.

The office is amazing.

They have an education advocate who comes in to introduce herself and she calls you to make sure you’re getting everything you should from the county (school wise). I nearly wept with joy.

After two hours of pouring our hearts out and her seeing Jack at his absolute worst, I felt like we were actually in the right place, with the right provider for Jack.

Yet we left with several more labels than we entered with.

I felt…hurt. Dejected. Like I had been run over by a truck.

As I drove home, I pondered all the times that I said, “Labels are for soup cans, not for my son!”

I was wrong. 

If you pick up a can of soup, and turn it over you learn all kinds of information. You can see how much sodium is inside, and how many calories there are per serving. You can read about serving suggestions, or find out the expiration date. Sometimes, you can even get a good recipe or two! If you peel the label off a candy bar, you get to the chocolate underneath—that’s the GOOD STUFF!

So, my son has labels. Lots of them. Some of them are really scary, and life-altering. I don’t want him to be overlooked on his shelf. I don’t want him to get forgotten in the “system!” He is more—look at his labels. Look hard. Because, underneath them, you will find a little boy with dimples that will melt your heart. You will see a child who has been both physically and emotionally wounded, but who doesn’t let that inhibit his ability to love.

Jack has cerebral palsy, a g-tube, dysphagia, bronchopulmonary dysplasia, PDD-NOS, SPD, anxiety disorder, Fetal alcohol/drug, OCD, and is probably bipolar.

But underneath those labels, I’ve got the good stuff.

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Jo July 13, 2012 at 1:22 pm

Wow what an amazing post!!! You are just so right.
Your Jack is so lucky to have you Mom!!!!
When people said to me but you don’t want him labelled I said NO I don’t want him labelled as lazy, stupid, not trying hard enough. I want them to understand the explannation. He has a physical issue that makes things harder….There is a difference.
Peace and wish you a great summer.
Jo

2 Heather P July 13, 2012 at 4:14 pm

You’re totally right JO! I have felt, and probably always will…that I really don’t want special treatment for him. I want him to learn in his own way, in his own time–and I’m OK with whatever that means for him. This is not about me. It’s all about him.

xo

3 Mary S July 14, 2012 at 12:03 pm

I agree with you & Jo that I want people to know,that when my child runs away or hides under a chair or table, it is not because I haven’t made him behave,it’s because of his anxiety disorder and stranger phobia as well as the fact that he can’t handle being around crowd’s and the noise that goes with them.It causes him to try to get away from it.When upset,he shuts down,loses his speech and either growls,screams or makes a ear splitting whining noise. He also lives with a number of label’s and that is ok by me since it help’s me and others to partially understand why he act’s the way he does.I do wish we could find help for our son but he no longer even has a psychiatrist since ours left and there is no one that accepts Autistic kids within a hundred miles of us.As for a therapist,the nearest one is at the Emory Autism Center which is 1&1/2 hours away and not covered by our insurance. None of the labels matter when he snuggles up to me for our nightly “talk” or when he holds my hand coming out of the middle school or brings me flowers he picked.I know what you mean by,I got the good stuff.

4 Heather P July 16, 2012 at 4:31 pm

Mary…are you in GA? That’s where we moved from, and I know how difficult it is!

The good stuff makes all the hard stuff worth it. Funny how that works, huh?

5 Mary S July 16, 2012 at 5:28 pm

How did you ever guess?Wait,I know!Because Ga ranks about #50 of state’s that won’t help anyone.

6 Mary S July 16, 2012 at 5:29 pm

I suggested we move but my hubby refuses to leave Ga.

7 Janet July 15, 2012 at 8:49 am

Labels and understanding said labels, are helpful so we know how to help our kids and to give our kids the opportunity to just be kids.

Leaving appointments with more stuff piled on is never fun – actually it is hard. It always takes me time to process things, then come to the realization that knowing is better than not.

Hugs!

8 Heather P July 16, 2012 at 4:32 pm

It takes me a hot second to grasp it too…usually followed by copious amounts of comfort food! 😉

Hugs back, friend!

9 Jodi July 21, 2012 at 3:05 pm

Not sure what labels you may have recently acquired but your description of Jack rang a bell for me on something relatively rare and sometimes missed. Has he been checked for Smith Magenis Syndrome? http://www.prisms.org/index.php/us/what-is-sms/characteristics

Certainly can’t really tell much of anything from a blog post but the sleep disturbance and picking at the nails made me wonder. Labels are a drag but can sometimes help you find others that understand and can serve a support system

10 Heather P July 26, 2012 at 11:18 am

Jodi…he hasn’t…but that does sound a lot like Jack! I’m looking in to this…

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