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....

Saturday, April 16, 2011

Faith in Humanity...

Tess met the Easter Bunny the other day.

Sheila and I had taken the kids (Blake, Bobby, Ellie and Tessie) to the mall to shop for the afternoon. In the middle of the mall there was an Easter display complete with the Easter Bunny and kids could have their photos taken sitting on his lap.

In the past I have tended to shy away from this type of thing with Tessie because it can be awkward to try to explain to the person in the costume how they have to hold Tessie and that she can't talk and I worry that they might not grasp the severity of her disabilities and could drop her or, and for whatever reason, I think to myself, "What if they aren't comfortable holding her and wish I wouldn't have her do it?". That is the biggest issue if I am to be brutally honest.

"What if they don't like her?"

But, I am pleased to report that I am getting past some of my issues and I marched right on up with Tessie to that Easter Bunny and very quietly leaned in and simply asked them if they were okay with her sitting on their lap or would they prefer her next to them in her stroller (I did go through the explanation of her disabilities) ?

The Easter Bunny assured me that they were absolutely fine with having her on her lap (it was actually a woman) and then went on, when they saw my fear about Tessie getting dropped, and told me that she actually worked with kids with special needs.

Their are no words to describe the relief that I felt. This person had no qualms whatsoever and was so incredible with Tess. I had Blake, Bobby and Ellie get in the photo as well and they all worked to try to coax Tess to look at the camera.

Let's just say, getting a really good picture of Tessie is a trick and a half, especially when she is as enthralled with something as she was that bunny. She just could not stop looking at it and touching it's "fur" and it's pretty bow tie (I think she even leaned in to try to kiss her at one point). It was beyond adorable.

We got a semi-decent photo fairly quickly and so we had Tessie say good-bye to the Easter Bunny and put her back in her stroller while they waited for me to pay. During this time Tessie started screeching her happy sounds and kept looking over at the bunny. She just loved it! And Tessie can get LOUD when she feels so inspired.

After I paid we waved one last good-bye and continued shopping. A little while later, the Easter Bunny was going on a break and was walking through the mall and saw Tessie and made a beeline right for her. Tess was so excited. The bunny played with Tess for a minute before continuing on.

About a half hour later someone came up to me and tapped me on my shoulder. "Are you the mother to the little girl named Tess?" I was sort of taken aback but nodded and said yes. She then went on to tell me she was the woman in the Easter Bunny costume and how happy she was that we brought Tess in to have a picture with her and how beautiful she thought Tess was.

Talk about making a mother feel good! I felt like skipping I was so happy. I smiled and thanked her profusely for her kindness and her taking the extra time for Tess. She informed me that she was thrilled to have been able to do it.

So I guess the point of my little rambling today is, never lose your faith in humanity.

Or the Easter Bunny.....

Thursday, April 7, 2011

Raising an Olympic Champion...

As many of you already know, I am the proud mother of an Olympic Champion. I know, I know, only seven years old and she is shining like a star! She should be on a box of Wheaties for Pete's Sake.

I, of course, am talking about my Tessie Toodles and her stellar performance at last November's Special Olympics.

Her category? Bowling-with assistance

Her placement? First Baby!

That's right. Out of 82 kids, my Toodle Bug placed FIRST out of everyone there. In all categories. I framed her blue ribbon.

Ellie went with us as did Sheila. I was nervous about going because I, in all honesty, could not even begin to imagine how a child who could not even hold a ping pong ball, would possibly be able to throw a bowling ball down a lane...from a wheelchair. I almost didn't have her go. I know, I know. My issues were getting in the way once again of what was really important. But I sucked up my fears of the unknown and went.

It was so much fun!

The energy there was total excitement and happiness. The kids were so proud of themselves. They cheered loud and proud for ALL the athletes no matter what place they took as far as ribbons went. And there was none of that petty nonsense that comes from the adults that you see at so many sporting events. Everyone just wanted everyone else to have fun.

Tessie was the only kid there in a wheelchair and with such severe disabilities so I was filled with anxiety at first. I said to Ellie (who went with us to cheer her little sister on and to help), "I think Tess is the most disabled kid here." Ellie looked around and felt the same way. I'm sure it sounds like we were being shallow or something but it wasn't that. It was an indescribable feeling that you have to experience to understand, I think. Almost as though, even in a place where everyone has a disability of some sort, Tessie was still out of place because hers were so severe in comparison. We just wanted to fit in in a place where we thought fitting in wouldn't even be an issue.

Then, further down the lanes, we saw another, older child in a wheelchair who needed as much help as Tessie. Ellie and I both just looked at each other and were relieved that Tessie did fit right in after all. And I know, she fit in all along and it was our issues and blah blah blah but you just can't help how you feel and Tessie and the situations we sometimes find ourselves in with her come with a whole host of feelings that we just have never had to experience before.

Anyway, I was still trying to figure out how Tessie could realistically participate but they were all over it. I wish I was savvy enough to post photos on here but suffice it to say that we positioned a long piece of wood shaped to hold a ball, against Tessie's lap as she sat in her wheelchair and had her push the ball which would then roll all the way down the lane to the pins.

Ellie helped position the tray and then helped Tessie place her hands on the ball and away it went. It was actually quite hard not to get caught up in the excitement of it all. I found myself cheering and yelling and clapping and laughing as Tessie got spare after spare. It was awesome. Ellie was cheering. Sheila was cheering. Tessie was laughing. And believe it or not, I was totally in my element.

Of course Tessie's high score might have just a little something to do with the precision with which Ellie positioned that wood (and she REALLY wanted Tessie to win) but hey, whatever gets the job done, right?

Tessie did need a bit of a break after a while but then went right back at it.

At the end of the morning's events the ribbons were handed out and everyone got something which is nice in this type of situation. But, at risk of sounding like a real jerk, I want to remind you that Tessie got a ribbon. A blue ribbon. A first place ribbon.

So now we are gearing up for another showing at the Special Olympics. Tess has been entered in the 50 yard dash with assistance (or some sort of race) and the softball throw and will probably be in a few other events. Both Blake and Ellie are coming with us this time to, ahem, help....and cheer.

I am excited for the games and for Tessie to be able to show her stuff.

After all, she is an Olympic Champion...