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Labels, labels, labels, get your labels here!!!

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Our son was diagnosed with “severe” ADHD in February, 2009.  He was three months shy of his fourth birthday, if that’s any indication of the level of hyperactivity and inability to focus that we were dealing with.

Although I was sad, there was also a sense of relief.  After having our son kicked out of two different daycares, and feeling like failures as parents on an almost daily basis, we now had some idea of what we were dealing with, and how to get started in finding ways to support him.

Our son’s ADHD was so intense, that unlike many parents, we did choose to try medication, even at his young age.  He was just completely incapable of sitting still for any length of time, constantly fidgeting, wriggling, touching, grabbing, spinning…anything you could think of to be in constant motion.  And I must say, the medication proved to be a blessing, helping him to slow down, and really be present in the moment.

Later that year, around October, we pursued an evaluation with the school district.  Our thought at the time was to see if he qualified for pre-K services, based on his ADHD.  We all got ready for the evaluation, which was two hours long, and chose not to give Connor his medication that morning.  We felt that the diagnosticians should see what he is really like, without medication, since we never know when medication will lose effectiveness for him.

After more than two hours of questions and observations and descriptions of our son, we prepared to go over their findings.  I think I actually stopped breathing for a moment when they said “mild Asperger’s Syndrome” and sat there stunned.  I wasn’t ready for that.  I was prepared for ADHD, and had become accustomed to the thought of it.  But the idea of austism felt like doors were slamming shut.

What about his future?  What about college?  What about independence and a family of his own?  These thoughts swirled in my head while the diagnostician sat explaining school services to us.  And then she was pushing a box of tissue toward me, and I realized that silent tears had begun cascading down my face.  I heard her saying “it’s really very mild, and he can still be successful.” 

Just make it go away.  Make it stop.  Take all those words back, and give me back my son, before your evaluation, before your “analysis”, before the “A” word.

But this is life, and there is no going back, there is only going forward, with all of our courage, and all of our resolve. 

Needless to say, my son qualified for pre-K services.  He now had two “A” diagnosis’ to entitle him to services.  Although the ADHD was the most noticeable, I was also now allowing myself to see some of the Asperger’s qualities too.  They were always there, but I felt comfortable putting them in the ADHD bin.  But now I would face them, and we would work on them together.

All of this led us to yet another evaluation.  This one was with Travis County Mental Health Mental Retardation.  I hated that name so much, and they recently changed it to Travis County Integral Care.  In Texas, this county agency coordinates services for the disabled population.  Their evaluation, much like the school’s, lasted about two hours.  However, their diagnostician simply went through her booklets of special tests, asking us questions like, “Does he have a preoccupation with one or more stereotyped and restricted patterns of interest?”

“No.”

After a barage of questions, she told us that she didn’t believe he “fit the criteria” for Asperger’s, but she would put him in the PDD-NOS category.

I don’t know why, but it enraged me.  I began crying, and my voice got louder and louder.

“Every place we have been for an evaluation, has given us a different label to attach to our son.  I don’t think anybody knows what they’re doing!  I want to make sure I get appropriate services for my son, and I want some consistency between the so-called professionals working with him, so I want you to reconsider the diagnosis.  All you did was read out of a book, why don’t you ask us some questions about what we deal with every day, and we’ll tell you!”

She reluctantly agreed.  We told her how he spins when he enters and leaves a room.  We told her about how he becomes extremely agitated if you refer to a motorcycle as a “chopper”, hounding you to retract it and say it’s a motorcycle, because he just can’t accept that something has more than one word.  We told her how he screams when the hair dryer or vacuum cleaner is running.

As though she was doing us a gigantic favor, she agreed to put him in the Asperger’s category.  Gosh, thanks lady, you made our day!

To be honest, I’m not sure what my son’s label should be.  Asperger’s, PDD, ADHD…it doesn’t really matter.  The important thing is that we’re finding ways to work with him and support him.

What amazes me in all this, is that no matter where we went for tests and evaluations, no one ever offered us assistance, as parents, dealing with this devastating news.  No information on parent support groups, grief support, nothing.  As parents of a special needs child, we are all the tireless researchers, therapists, appointment makers, service coordinators, and chauffers for our children.  We are also the walking wounded, the ones that brace themselves everyday for the bad report from school or childcare, the ones that live and die by every tiny success of our child, the ones with a huge hole right through the middle of us.

But we are warriors too.  And as I slowly make my way through the maze of services and groups, I find that parents of special needs children are quite special.  We are tireless and determined, we arm ourselves with vast amounts of knowledge, and never hesitate to go toe to toe with a doctor or school to advocate for our children.

So I’ve found that, along with all these labels that I never wanted, and all the extra work that none of us wants to have to do, I have found many positives along the way.  My patience has expanded to infinite proportions, my sense of humor is more vast than it was before, and I know, better than most parents, how significant and meaningful even the tiniest success can be.

For my son,  I hold onto those positives, because if I don’t, I would be of little use to him.  And after all, he is my greatest gift.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

2 responses »

  1. I was reading your blog and as I got to the part where you write about the lack of information out there for the parents I began to cry. My daughter was recently diagnosed with ODD and it really has been a living nightmare trying to find the answers that I need to get help for her, help for my husband and I and making sure it works for our family. I have been fortunate to sit down with a handful of people who have walked this path before me and have given me extremely good advice but it was not achieved by being complacent. I have spent hours on the internet, calling resources, getting evaluations, reading and whatever it took to get answers. We are just beginning the process with our daughters walk through the school district to get services and all we keep hearing is how bright she is and we will have to show inability for her to able to learn. It is very frustrating. She will be evaluated at her school she is in by the district next week and I hope that she will show her true self so they can really see what is going on. I do feel very tired and sometimes I get so frustrated and want to scream as loud as I can and then I realize if I give up who will be her advocate. Who will be there to make sure that she is never given up on or left behind? The only people that will do that are her parents and so I tredge on to all of the appointments, evaluations, disappointing daycare pick-ups and I make the best of what we have been given. I have been very touched by some of your postings and I am glad that you have taken the time to post so that I can be reminded that I am not the only person in this struggle and that there are a lot of people out there walking this same walk and we do make it as long as we stay focused on the task and remember that our kids the most important job we will ever have and they love us even when we make mistakes.

    Reply
    • I am so sorry to about the difficulties with your daughter. Although I primarily started this blog as a creative outlet for myself, I also knew there had to be many more parents out there that were struggling with the same issues. I’m so glad you could relate. I hope over time I’m able to provide some good resources and direction for people so others don’t have to feel so lost on this journey. It’s hard to believe that the doctors and other professionals provide nothing for parents. If it wasn’t for the internet, we would really be lost. Stay strong!

      Reply

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