Friday, March 4, 2011

Gymnastics Meeting

The meeting with the owner went well, I think.  I think it was very beneficial to communicate today - because it was clear that there were things that weren't understood - on both parts.

They did not understand exactly why we have to suction.  So I explained that.  He was also confused as to when we need to suction.  Meaning that he has observed that each one of us (her two nurses and myself) wait a different length of time before suctioning.  So, I explained that each one of us has a different level of comfortableness with how long to let her try to clear it on her own.

I don't think we agree on how much the other kids are distracted by the suctioning.  Remember that she's in the three-year old class, and I believe that at that age they are very self-absorbed and not really focused on other kids.  I don't think any of them even notice that Harlie is different at all.  But, you can't agree on everything I suppose.  And from my perspective, I've seen kids get used to the sound.  But from his perspective he's seen kids get distracted easily.  Oh well.

The most important thing is that we agreed that we would suction to the side of the mat whenever possible.  But, if we couldn't and we had to go to her wherever she was - that they need to trust us that it was a necessary thing and move on.  

He explained why they don't let her do a forward roll.  He said that he is simply not comfortable with her doing one right now.  If done incorrectly, a child can be seriously hurt (break their neck) and he didn't want to take any chances.  He said he will teach her when she builds her upper body strength more.  This is a perfect example of the importance of communication!  Harlie's nurses thought that she was being excluded unnecessarily and her coaches were making a decision based on their training in gymnastics.  I can see both sides and am appreciative of both looking out for Harlie in their own way.

Our being late to appointments, etc. is certainly an issue.  The problem is that so much is packed in a day that one thing going wrong completely screws up the schedule.

Another problem is me.  We go and go all the time, that on the rare occasion that I get to sit down for a minute - I take 6 instead of the 4 my schedule allows.  Sorry.  I'm only human.  Now, granted, neither is particularly the case when it comes to gymnastics.  In this case, the mornings are crazy (aren't they for everyone?) and Harlie might be completely cooperative in waking up and eating one day - and totally opposite the next.  Eating alone could take 15 minutes, or 50.  And trust me when I say we are always doing our BEST when it comes to that!  Feeding her is hardly enjoyable enough that anyone in their right mind would dilly-dally.

Luckily, this is one area that he said he has let go for us specifically.  He said that normally when kids are late - it is disruptive to the other kids.  But, when Harlie goes in, she goes straight to her spot and starts doing whatever they are doing with no fuss and no desire for her to be noticed.  He said if it were any other kid, he would have talked to me about it a long time ago.  So, it's nice to know that he can and has been flexible.  And because of that, I will certainly make more of an effort to get her there on time.  I should clarify that we are usually walking in the door at 9:15 - class start time.  So, it takes a minute to get back there and take off her coat and shoes.  So, it's not like we're 10 minutes late or anything.

I am going to make as much effort as possible to be as least disruptive as we can, so that when we can't help it - it's not a big deal.  And I think he appreciates that effort and will respond in kind.

The best part of the meeting was that I got my reassurance that we are welcome there.  He said they love Harlie and they want her to stay and be a part of the class.  He said the effort she puts into it exceeds the effort of some able-bodied kids (like her brother) and he will always match those efforts.  A few weeks ago I told him about Harlie's upcoming spinal fusion and that she would be pretty weak coming out of the cast.  I asked him if I could pay more to put an instructor on her for a little while until she builds up her strength again.  He said that he would do whatever he could to help her.  He brought that conversation up this morning and reiterated that and said that he meant it.

I also gave him a copy of her medical summary so he could get a better understanding of what she's been through.

Oh!  And he also said that she has made such great progress since September.  Especially in her balance.   And balance is particularly difficult for her because of her leg length discrepancy (due to her spinal issues, her hips are crooked, making one leg appear longer than then the other).  So, that goes to show you how hard she is working during those 45 minutes every week!

The last thing I want to share is that he seemed to be pretty prepared for our meeting.  And he mentioned that he spoke to his wife about meeting me (it is a family owned business) and she said, "remember that she's her mom".  I'm guessing that he felt that everything has been fine (when Brandy is in the gym) and then I sit in one class and the shit hits the fan.  Oops.  Sorry.  I guess I got all Mama Bear.  But I am very appreciative that they can recognize that and understand that.  I felt that showed some of their compassion I was looking for.  I said I would stay out of the gym as much as possible.  Seriously, that is a role better suited by her nurses.  And he appreciated that!

So, really I think it was very beneficial for both sides.  I definitely feel better about being there now.  I just want to know that my child is accepted and not thought of badly or treated differently in a negative way.

Okay, it's time to go and get Murphy from school.  Thank you so much for all your support!  It is so wonderful to know I have so many people on my side, backing me up and loving my Harlie!  I just can't thank you enough for that!



Heather Lewis said...

so so glad you had a good meeting. I'm very proud of you for sitting down with him and talking it out when so many other people would have just taken their kid and run. you are an awesome advocate for her. and I'm very glad he was receptive to you and your concerns. renewed faith!

Anonymous said...

Yay! It's a win-win.
Great job christy!

Ann said...

Glad to hear you came away from the meeting with positive results. And, thank you for taking the time to update us on how things went ... that was (at least) ten minutes you could have spent on yourself, but you gave to us instead. :)

Have a great weekend Christy. My wish for you is that you don't have to do any advocating or educating for at least the next 48 hours. You deserve a break!


ANewKindOfPerfect said...

I am so glad that you decided to have this meeting! It seemed like your gut was telling you to take Harlie and run, which would have been understandable. It turned out for the better though, it sounds like! You are a GREAT advocate for your princess. :)

Susan said...

I missed your post about this until now, and I'm kind of happy becuase I would have been very upset for you. I'm glad you had the courage to setup the meeting and things got resolved! I still think they could have handled things better in the past. Hugs. It sounds like an emotionally tough week. I hope you have a good relaxing weekend!