Thursday, March 3, 2011

Gymnastics Troubles.

So, last week at gymnastics, something really bothered me.  Brandy wasn't with us - so it was just me and Harlie.  Someone (someone trained, I mean) always needs to be within ear shot/eye sight of her to make sure that if she needs suctioning, we know it.  So, that means that I had to sit in the gym with the class - something no other parent does.  So, the kids (Harlie is in a 3-year old class) are on the mat and going around in a structured way from one piece of equipment to another.

Harlie was on the opposite side of the mat when she started coughing.  I usually give her a few seconds to see if she can clear it herself.  But she looked for me and then started to walk in my direction - through the middle of the mat - coughing the whole time.  Now, this is going to sound gross - but it's just the way it is - when Harlie coughs, stuff comes out of her trach.  If she doesn't clear it, then the secretions come out - and then she sucks them back in when she takes her next breath.  It's pretty gross and I can only imagine that it's pretty uncomfortable for her.  Clearly, she is not breathing easy like that.

So, seeing that she needed to be suctioned, I stood up, got the suction machine and headed over to her.  We met in the middle of the mat and I put the machine down and started to suction.  The instructor came over to me and said something like "Can you please do that over to the side?  That is distracting to the other students".

It took everything I had not to look as pissed as I was.  I replied with something like, "It's her airway and the kids get used to the sound of the machine after just a few times".

I went back to the wall and sat down and started thinking of other gyms I could look into.  All I could think about was that we are just not welcome here.  Oh, and that the distraction of the other children trumps my child's ability to BREATHE.  Got it.

So, when my child passes out on her way to the side of the mat - that won't be distracting at all.

Maybe we should just go to the parking lot to suction.  Think that would work?

And the world does accommodate us when we don't want distractions, doesn't it?  No.  It doesn't.  There are distractions everywhere.  Deal with it.  And I'm sorry, they are three and not in Olympic training.  They aren't doing handstands on the balance beam yet.  Chillax people.

Harlie started gymnastics in September.  So far we have been "spoken to" for:

1. Being 6 minutes late to class.
2. Taking pictures during class.
3. Suctioning on the mat during class.
4. Trying to encourage Harlie during class.

Keep in mind that Murphy has been in class since September as well, and I have never been "spoken to" for anything.  Not once.  And I've asked other parents - they've had no interactions like that at all with the owners or instructors.


Oh, and apparently she isn't "allowed" to do a forward roll.  When the other kids do a forward roll, they make Harlie do a hot dog roll.  Jennifer was with her one Friday when she saw that and she asked the instructor why and the instructor said, "I don't know, the lead instructor told me she can't".  What?  No one asked/told me.  So, what other "rules" do they have for her that I'm not aware of?

After last week, I have really given this a lot of thought.  While I want her to be treated as equally as possible - I don't think her ability to breathe should be compromised.  Duh.  And I'm truly sorry if the other kids (or adults - because I think that's the real issue here) are distracted.  I can't imagine some of the kids that have been in her class since September even notice anymore.  Well, that is assuming that they haven't noticed that the teachers are making a big issue of it.  Because that is how kids learn - from watching adults.

The machine is on for less than 15 seconds.  We are in a HUGE gym, so the sound gets drowned out.  It's not even that loud to begin with.

Anyway, this whole situation is just bothersome.  My kids love it.  But of course they don't see/feel what I'm feeling.  At least I hope Harlie doesn't feel anything weird from them.  I can tell you this much - this gym crowd is a strict bunch.  So far, I have seen virtually no flexibility.  And that just couldn't conflict with me and our way of life more.

I hate that rules have to change for us - but no one hates that our life is different more than us.  It's not like we suction Harlie because we like it.  It's terribly inconvenient, to tell you the truth.  If I'm driving alone with Harlie, I have to pull over to suction her.  And if I'm on interstate, oh well.  And when I am in the car alone with her, I have to keep that in mind the entire time.  I put myself in lanes that allow for quick pullovers.  It's a total bummer and stress inducer.

So, a quick distraction for other kids?  Not really high on my list of issues I care about.  Sorry.  I kind of have my hands full as it is.  I can't do anything about that.

I think I would just like to feel some compassion from the gym.  I wish they could understand what Harlie has overcome.  Like a 5% chance of living.  And 15 major surgeries.  And several near death experiences.  And that when she is exercising her heart and lungs can't produce oxygen to keep up like they should.  Remember that in addition to a crazy heart, she only has three lung lobes instead of the five you are supposed to have.  So, making her walk farther than necessary, while coughing and not breathing the best she can, only causes her body more stress.

So, a friend suggested I set up a meeting.  So, I did.  And it's tomorrow morning.  I am not good with conflict.  And I hope this meeting isn't like that.  I just hope that the owner doesn't pick the focus of the other kids in class over Harlie.  Because that will make me very sad.  I'm hoping that they just don't get it.  They have never asked me one question.  I think that's strange.  How could you not be a little curious about her?

So, wish me luck.  I hope that this produces a better understanding and relationship when it is over.  This activity has been so good for her.



Ann said...
This comment has been removed by the author.
Ann said...

Christy -- print off this blog post, take it with you to the meeting and hand it to everyone present at the meeting. You've said everything they need to hear right here in this post. In case you forget to say something at the meeting or just don't want the conflict right then and there ... you can reinforce what they NEED TO HEAR by having them read this. I don't like those people at your gym and I've never met them!! There is NO excuse for their inflexibility.


Beverley said...

I agree with have stated your points very well here.

When Leyda was in a gym is was child friendly....this one sounds like they are in it for the competition at some point in the future....IMO, NOT child friendly!

You are a wonderful advocate....go get'em!

Anonymous said...

I went to comment and realized that Ann beat me to it! If you don't want to print this blog post, maybe you could make a bullet point list of the things you've said in here - just something to look at if you get nervous or something at the meeting. I think it's great to have the meeting and get your point across. "When you know better, you do better." This gives them the chance to be more educated and know your child better. Then they have opportunity to improve. If not, see you later! Great job Christy and keep us posted!

Anonymous said...

I happened on your blog from a facebook post. Who knows how many degrees of separation are between us? I work in a hospital environment in which I am exposed to children and families like yours, dealing with scary and difficult situations. Then in real life, sometimes I am blessed to see successful children like yours, thriving in our community. I hope the gym can learn from you both! Please know that every once in a while, when someone gives you a second look, it comes from a place of (limited) understanding, love, support, and we're cheering you on!! When you speak up in that meeting, I'm almost sure that at least one person is already on your side, just waiting for the chance and the courage to stand up and say, "yes we can do better to support your child and enhance the knowledge and experience of everyone involved". Good luck and best wishes!!

B-Mama said...

Christy--rah, rah! I hope its going great while I type! You are doing a great thing for everyone involved. They need to be more sensitive to kids with special needs--they will better service their clientele by doing so!

Kim said...

So, the outcome?

If less than desireable, I'm going to call that gym. Seriously. I would encourage every one of your friends to do so.

Having had the privelege to see Harlie in a 'structured' environment with other children, yeah, they are curious when the suction machine comes on. It's noise, they've never seen a trach before in most instances, they want to know. Explain it, and it becomes part of the routine. Ignore it, ask for her to be removed, and you are doing a terrible disservice not only to your family, but to the other children, who have a wonderful opportunity to learn.

Shame on them. Seriously. They should not be teaching children if they do not have the ability to accept their own insecurities.

Just Diane said...

I have never heard of such a strict policy when it comes to small children. I mean, like you said, they aren't training for the olympics or anything. I don't know Christy. I think if they don't lighten up a little, then maybe a change of venue is what is needed.

I hope you were able to straighten things out today and put them in their place!