Friday, April 22, 2011

Don't drink the kool-aid...

Disabled; incapacitated by illness or injury; also : physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education

Mental Retardation; subaverage intellectual ability equivalent to or less than an IQ of 70 that is accompanied by significant deficits in abilities (as in communication or self-care) necessary for independent daily functioning, is present from birth or infancy, and is manifested especially by delayed or abnormal development, by learning difficulties, and by problems in social adjustment

Potential; someone or something that is considered a worthwhile possibility

The first two words are what I hear on a relatively frequent basis in regards to The Toots. Especially at doctors, therapist (PT, OT, ST, etc) visits. They are the words that people want to use to define her. Give her a label so that they know where to put her in context to their perspective worlds. She is not "normal" yet has no known diagnosis and thus no expectations as to what she can or will do in her life. Therefore, Tess is always defined by the words disabled and mentally retarded.

I am just as guilty of this as anybody. I am not proud to admit it but in my defense, perspective is easily lost when you are in the never ending grind of daily living. Especially when you see very little change and mostly the same old, same old every single day.

I used to say that someone had to be the realist as far as The Toots was concerned. Instead, what I think I have done is given up. How is that for an admission? Given up on your own child. And what makes it worse is that if it had been Blake or Ellie that was in need of some extra pushing and some tough love, I would never give up. Why? Not because I love them more or want more for them. The answer is very simple. Because they are "normal" which means I would know for sure that progress could be made.

So if you really think about it, I had sort of given up on the child that needed me to stay positive the most. The child who cannot speak for herself and say to me, "Mom, don't give up on me ! I'm in here. I can do this! Just help me to learn it."

Of course I am being somewhat dramatic when I say "given up". I in no way mean given up on Tessie. On her life. On the value that I know she has to offer the world. I am her biggest cheerleader and advocate when it comes to that. What I mean by "given up" is on her ability to make her own little world more powerful. Independent. Fulfilled. I drank the Kool-Aid so to speak and bought into the party line of "She will never be able to walk, sit, move or .....fill in the blank here, on her own." I got overwhelmed, tired and complacent. Her father never did. He has alway maintained that Tess is a "late bloomer" and is constantly coming in to her own. Not me. I had accepted the "reality" and thought it was just about time he did to.

Then, last week, I got a much needed wake up call. A very highly regarded physical therapist and her students at UNE asked to get a chance to meet Tessie and use her as a "patient" for training purposes. They saw Tessie lying on a mat and all thought the same thing. "She will never be able to...."

Then they started working with her. I cannot tell you in words how absolutely amazing my Toodle Bug was. She worked so hard and at one point the professor had her "walking". She held Tess at her hips and gently positioned her so that Tess could work her legs. It took some time for Tessie to process what she was supposed to do but she did it. With the professors help, my Toodle Bug WALKED several feet. I get teary thinking about it.

And she was so proud of herself! The whole class got caught up in the thrill of it and was cheering and clapping and my Tessie was grinning and looking at everybody as if to say, "That's right folks. I got this!"

After they did some therapy on her they let her rest and started talking about what would they do for her "plan of care" if they were her therapists. This was the part where I expected to hear the usual song and dance about putting her through range of motion and some basic exercises (even though I had just seen her do so much more). This is what I got instead:

"Tess has so much potential. I think at the least she could sit independently and probably walk some day."-from the professor

"I can't believe the potential she has just shown us. She can get this. It will take a lot of work, but she gets it. She attempts to do what we ask her and remembers it the next time."-from the students

"Thank you so much for bringing her today. She is amazing. Her potential is huge! What can we do to help?"-from everyone

With that one little word, potential, I felt like something that had been ripped out of my heart had just been put back in. I realized how much I had let Tessie down by not seeing this for myself and vowed to never let it happen again. I got my focus back. I am seeing Tess clearly again and not through the eyes of others and what they want to tell me will never happen.

I've got news for them:

My Tessie is amazing. Maybe she will and maybe she won't do certain things but it will no longer be because someone else told me so.

Tessie is full of potential and I will never forget that again....


  1. Yes she can!!! Yes she can!!! Yes she can, can, can!!! I think we all need to re-adjust our thinking as far as the Toodle Bug is concerned. No more if she does, but when she does! Excellent Post, Joanna!!

  2. She is like her mother- she will not give up! Great post Joanna!

  3. I'm sitting here with tears in my eyes, knowing that I was just incredibly blessed by reading this. We all "give up" at times, and then God gives us yet another nudge and a much needed surge of hope just when we least expect it!

  4. Wow...this is the only word that kept popping into my head as I read this. She is an amazing child! Way to go, Tessie!!!

  5. Tessie is not the only one who should not be underestimated. You and Charlie are fantastic parents and have operated only in love, compassion, strength, and grace with all your kids. If you had not had some kind of underlying hope in Tess's ability, you likely wouldn't have bothered to take her to yet another therapy. You are just as amazing as Tessie.... you have done what at one time was likely something you thought would be impossible for you to do Tessie will be doing things we may have thought was impossible for her to do. We will all be more expectant and watch and wait for her to rock and roll. (or sit up by herself....or even walk) yea Tessie!

  6. I just love reading your posts Joanna - and this was no exception! I hope you take them up on the "What can we do to help?" I am sure that Tessie will sit up and even walk with you and Charlie and the girls right along side her.