Right Now All I See Is “Can’t”

V, J, D

Yesterday the dreaded thick ugly brown envelope came home. You know the one I’m talking about. The one that has the reevaluation results. I knew it was coming because our IEP meeting is January 5th. I just didn’t think  about the fact that it would come home three days before Christmas. And while I certainly was not expecting any new realizations or sweeping gains across the boards, I definitely wasn’t prepared emotionally for what was right there in black and white.

I waived my rights to attend the meeting that would give Debbie’s team permission to test her. It was a routine meeting and they were testing for all the things they’ve always tested for. It had now become mundane and taking the time off from work was unnecessary. So the  SLP, SPED teacher, Gen. Ed teacher, OT, school psychologist and other various players convened and signed off on reevaluating Debbie for autism.

Those therapists who needed more information sent home parent questionnaires for us to fill out. As I was answering question after question, I realized this time was different from when we first received Debbie’s initial autism diagnosis. At that time I had scored her as “practically perfect in every way” because I was in my denial phase. This time I was honest with myself and her therapists. And you know what? Debbie came out really freaking low. There was no denying the obvious and what I have known all along…Debbie was not just going to be labeled with autism. Another gut-wrenching label was going to be added to her diagnosis and the pile of what she can’t do was going to grow exponentially. I commented to Vince what I knew to be true, and I told him that even though I was right, if I had to see the label actually written on paper, I was going to be devastated.

And then it came true. The blow landed right in the middle of my gut and knocked the wind out of my sails. There it was in right in front of me on paper in black and white.

“Debbie continues to display autistic symptoms including poor eye contact, repetitive speech, restricted interests, behavioral rigidity, lack of social reciprocity, severely impacted communication, and difficulties with self-regulation. Her current special education disabling condition appears to be appropriate though she would also meet the criteria for a special education of intellectual disability. It is recommended that the IEP team consider this information, along with any additional testing data to determine special education eligibility and for educational planning.”

D and MIntellectual Disability: a politically correct way to say “mentally retarded.” It was made official on paper. And again, I knew it was coming. I was not and I am not in denial. But to see it, to process it, and to understand it was the knock-out blow and right now all I can see is the word “can’t.” The ceiling has just been lowered by several feet and limitations and roadblocks are in our way. They won’t be there forever and I’m not down forever. Eventually I will get back up on my feet and continue the fight. For the time being though, I am hurting and I am licking my wounds. And I think I’m entitled to do so.

 

 

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9 thoughts on “Right Now All I See Is “Can’t”

  1. debbiesupporter says:

    I’ve been following you for awhile now, and love to see Debbies progress- which we have all seen. Intellectual disability is a stinging blow, but I wanted to say that it is rather more on the side of delay- her progress is slow, but there. This page… it’s neither here nor there. if you need to step away from it and shield your family and yourselves, that is important. But from someone on the other side of the looking glass I want to tell you how I see this: They are trying to ensure that she gets the help she needs throughout school and life. But the progress she’s made since I started following you is undeniable! ❤ I've noticed many times the kids I work with have their spectacular days in terms of behaviors and lack of EC among other things because they don't always have a relationship with those who are judging them. and they know they're being assessed. Just… remember the Debbie you know, and those close to her know. Some people aren't going to see her in the way you see her, and that's their loss. Sending you love and lots of ketchup.

  2. E says:

    This same situation just happened to my family, too. We heard it in late September. I have taken a few months off from my page and still don’t know if/when I’ll be back. I knew deep down, too. It doesn’t make it easier to hear, or to mentally and emotionally deal with. It’s a pain no one other than a fellow Mom who has heard the same diagnosis can understand. And it’s just one more thing on top of others. You aren’t alone. Unfortunately, it’s really hard to find parents who can relate. I can and if or when you need an ear, I can listen. And I will get it all. So sorry for this hurt, I’m hoping it will get better soon.

  3. Darlene Kimsey says:

    You are entitled to hurt and lick your wounds. Take your time. I have followed you long enough to know you won’t stay there long. You are a fighter! Some re-cooping time is necessary for the journey you’ve been on. My daughter and I have had to switch our language from “can’t” to “not able” because we found that “can’t” means to people that there’s a willfulness to the non-action. Not able means it’s a temporary thing. Your girl WILL BE ABLE to do things you thought she can’t. It will just take time and an alternate route to your journey. And I hope you don’t think you’re alone because you’re not. I will be cheering for ya’ll and so are MANY others. Love and prayers to you all during this Christmas time.

  4. Intellectual disability, such a polite way of saying ” Retarded” but I say BULLSHIT! They told us that about my grandson when he was diagnosed 5 yrs ago! Actually we were told to expect Group Home Status for him by the time he turned 6! Well he is 6 1/2 now, reads well, does Math well, social skills are picking up & he is ice skating on a special needs hockey team! But he wasn’t always like this. It took a lot of blood,sweat & plenty of tears! It’s the same for you Julie. I have seen all the progress that Debbie has made in the past year by your posts! your Debbie will shine in her own time. There are no such words as I Can’t! She will! You are entitled to hurt & lick your wounds, because that pain is so real! But, I believe you will rise up & continue the fight because your Julie Brusio & that’s what you do! Your a fighter !

  5. I remember when this happened with my son. You know it’s coming but nothing really prepares you for seeing it on paper. It becomes seriously real! I too gave myself a little time for it to sink in and honestly, cry…then I got to work.
    You are not alone.

  6. Jessie says:

    I just found your post on Facebook and I know its hard to see it for real. We all think our beautiful children are perfect. And truthfully she still is perfect and beautiful, she just will have different learning needs. I hope that with time you can see how lucky you are that your education team cares enough to evaluate further. I teach and I’ve seen many kids labeled with a misdiagnosis and the school can’t be bothered to deal with them. With the new evaluation the IEP can be improved to better meet her needs and lead her down a track to success. With your support and the schools support, it will happen. She will have a good life because the people that care will lead her to it.

    • I teach too, Jessie and I fully understand the IEP process and all that it entails. We have been at this for a very long time. I have also sat on both sides of the table as teacher and parent. It is a fine line but I certainly know how to walk it. On the parent side however, it is not an easy pill to swallow when a label comes home without prior communication. The school psychologist for all of her good intentions should have notified us about the results prior to sending them home. And I can assure you that we will be addressing this fact at our meeting on January 5th. Thank you for your support and thoughts.

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