Wednesday, January 23, 2013

The Secret Society

I have a son with ADHD.

I have another son with Epilepsy.

The ADHD was diagnosed in the summer of 2010.

The Epilepsy was diagnosed in the summer of 2012.

Why do I feel more knowledgeable with epilepsy than I do with the ADHD?

It isn't for lack of reading and experimenting and testing.  I've done it all.  The last Psychologist said, "Well, I don't really think we can do anything for [Big Boy], you are already implementing everything I would suggest."

Why is it that when I talk to anyone (other than a close friend) about ADHD and the fact that my son HAS it, do they lower their voice?  It happened the other day at the school.  I was talking to a school employee and she lowered her voice so that the other person couldn't hear.  It wasn't so that we wouldn't disturb anyone.  (I don't question this employees whispering, I happen to think she will be the key to Big Boy's success.)  Why whisper?  Are we as society ashamed of ADHD?

It really hit me that day.  ADHD is a Secret Society.  As a mom, I've felt alone.  Abandoned.  Fighting our own family battle to get some help for our son.  No parent has ever come up to me and said, "Hey, you look like you may be struggling with [Big Boy], I want you to know my son, daughter, nephew, neighbor, etc. has ADHD and it's nothing to be ashamed of."

Many years ago I went to an Adult Education class on finding your Spiritual Angels.  I know, corny, but I've always felt connected to the spiritual world and I was grasping at straws for answers and guidance, so tried everything.  While immersed in meditation in this class, I began to cry.  I had connected with 'something/someone' and I could hear myself feeling guilty for the ADHD diagnosis.  That was the first bombshell.  I actually felt responsible.  The classmates helped me understand that it is nothing to feel guilty about.  Feeling guilty adds a great unnecessary burden.  A burden that sticks in the mud and doesn't bring anything positive to the situation.

And the second bombshell is the whispering.  Why must we whisper?

ADHD is a is a neurobehavioral disorder. Guess what?  Epilepsy is a chronic neurological disorder.  So why does saying "my kid has epilepsy" vs. "my kid has ADHD" garner totally different responses?  Granted, ADHD doesn't involve seizures, but both have a medication, both are neurological, and both affect learning.

ADHD isn't a nasty cold sore you try to cover up.  It isn't an excuse to defend my poor parenting skills.  It needs to be nurtured and cared for by not only the parents, but teachers and friends, too.  How can others even begin to understand the needs of my son if no one knows he has this disorder? 

I used to be worried about the ADHD label.  I think the stigma of labeling of kids has decreased as the frequency of kids that need extra help has increased.  Was I worried or ashamed of the label?

Screw the label.  Label away.

My kid needs help and I'm not going to whisper anymore.




Anonymous said...

I do this--lower the voice. when I'm talking about someone's ADHD or epilepsy, or hepatitis or anything. It's a privacy issue. But your point remains. Those who educate him need to be comfortable talking about it and working toward solutions.

You are certainly not alone

Anonymous said...

The whispers and the low voice tones could be due to HIPPA regulations and other privacy acts provided to instill anonymity for the parents and children. Chances are the educators will know because it would be laid out in an IEP.

Please be supportive of the teachers who are in the schools because they are dealt an unfair hand by the new regulations forced upon them by the Department of Education. If people were comfortable with the actual truths of learning, then inclusionary policies would be defunct and children would not be boxed into educational programs that depend more on chronological age than development of the individual.

That being said, the most important factor in your children's academic success is you and your husband. Parents are more important because they establish the norms, habits and boundaries that help their children find safety. The expectations you create in your home environment are integral to child development and no disability, teacher or policy will derail those teachings.

Looking back through your blog, you seem to be a wonderful family.

Carrie Guzzino said...

Thank you!

Carrie Guzzino said...

Hi there, Thank you for your comment. I appreciate it. I totally agree with all that you've written. Perhaps I should have given a different example, one not involving an educator, because it seems to happen with acquaintances not involved in education at all. Our boys are in a fantastic school with amazing support, I couldn't ask for more.

cxc410 said...

I think people are guarded about any comment they make towards any child. I have had to apologize to parents for making positive comments about their parenting of their Autistic child. I am very outspoken when it comes to children of all backgrounds, regardless of developmental issues or socio-economc status. It just seems that many parents can get offended from any comment you make about their child. I am a male who has worked with children for over ten years, and I still hear parents who are not comfortable with a male as a child care provider in any way, so it seems we have not come as far as we think.

Just remember, you and your husband are the biggest advocates for your children, so make it knowm you are not offended by any questions or conversation that is about them.