Wednesday, May 26, 2010

Disclosure.

BubTar is my shy guy. He is such a smart kid, but he doesn't fit in easily at school. He makes straight A's (and many of the kids in his class are in second grade for the second time), he always has his nose in a book (he is the only kid in his class reading chapter books...and his are on a 5th grade level on average), and our family is quite strict compared to the other children in his class (he watches Disney and Nick while his peers are talking about movies like Orphan and TV shows like Family Guy). He is awesome...funny, intelligent, and sensitive...but he feels like he's on the outside at school. He has one best friend from his previous school, they've been friends since Pre-K, but hasn't made any good friends at school this year. He is friends with the boys he is in scouts with, but hasn't made any close connections. Although he has had a good year, it has been a sore spot for him.

At the district Pinewood Derby meet, he met another wolf cub from a local pack, C. It was so easy and they were instant friends. Turns out, C lives on our very street! They are so similar, both shy, intelligent, funny, bibliophiles who read well above grade level. They play the same games, read the same books, have the same temperament. The second time they saw each other, C said, "BubTar, I'm so glad you are my friend. I don't have many." It was SUCH a BubTar thing to say. Not only are the boys VERY similar, C has a little sister, E, who is FIVE. E is outgoing, bubbly, hilarious, and JUST LIKE KAYTAR. The night before BubTar's birthday party we took the kids to movie night at C and E's church, and KayTar and E were instant friends. It was quite amazing...like someone took our kids, made a copy, tweaked one or two details, and TA DA! C and E were created. Every time we see them, we discover a new similarity. It was exactly what BubTar needed.

A couple of weekends ago, we invited C and E over for the evening. We had dinner and the kids played, the boys played Wii with Josh and the girls played dress up and threw a ball upstairs. The next day, BubTar and KayTar were invited to C and E's house. This is a huge deal, because KayTar has never, NEVER been anywhere without a family member or a trained medical professional (she goes to school and camp in the summer, but both those places have her medical history and are trained to handle her emergencies). To be honest, I didn't want to let her go. I was nervous, but she wanted to go so much and I couldn't tell her no. BubTar was going to be with her and he knows how to take care of her, so we decided she could go. We tube fed her, checked her glucose and ketones, gave her Albuterol, and dropped her off. The only instructions I gave were to make sure that IF she ate (and she probably wouldn't) the label needed to be checked to be sure that it did not contain tree nuts, and of course to call us if they needed anything. That was it. No mention of episodes. No mention of asthma or feeding disorders or tube feedings or unilateral hearing loss or light sensitivity or gross motor delays or sensory issues. I didn't give her whole history, all the worries, all the things that could possibly go wrong. I could have said all of that...maybe I should have...but I didn't. KayTar has really grown into her own this year and many days, MOST days, none of that is a major issue. I decided that for one day, for 3 hours, she could be a normal kid. KayTar knows her own limits, if she needs help doing something because of her motor delays, she will ask. If she doesn't want to eat something, she won't. If something triggers her sensory problems, she will withdraw from it. If she starts to feel sick, she will tell an adult. If she can't hear you, she will tell you to talk into the ear that works. If the sun hurts her eyes, she will ask to go inside. So I stepped back and let her take the lead. And it worked. She went, she played, she had a great time without a single issue.

It is difficult to know what to do in these situations, do you share too much and risk setting of alarm bells that don't need to ring? Do you stay quiet and not provide information that might be pertinent? Where is the line drawn? For us, in this situation, this worked. It was only a couple of hours. We were down the block and if anything out of the ordinary had occurred, we'd have been there in seconds. BubTar was there and he knows all about KayTar. She had been medicated and tube fed before going, the odds of anything happening were incredibly slim. I still worried, my baby was in a new environment without me, but I think we made the right call. As KayTar continues to grow, it will be a situation we find ourselves in more and more. How much do we share? When is appropriate to explain everything, when should we hold back? When do we let her take the lead, when do we step in? When is sharing everything a necessity and when is it a disservice to her? I don't know that we'll ever have the right answers to these questions, but I think it will be something we're having to ask ourselves more and more as KayTar enters her grade school years.

10 comments:

InTheFastLane said...

This is so hard....our case is not as severe as KayTar. But Dash, with his epilepsy and tourettes... neither if which is so bad that people are going to notice all the time, but the tourettes, there are somethings that people do notice. And sometimes I feel that I should explain, but then I don't want to. Because I don't want people to look at him differently or create that label in their heads that might not even need to be there.

Dash does have friends...but he is much like Bub, in that he would rather be reading a book. But, his best friend's family are good friends of ours and know everything and there are no explanations necessarily. I am so glad that he and we have that.

Bea said...

Two things:

1) How I wish, wish, wish that Bub would find a friend like that.

2) I read this post nervously, worried about where it was going, but even when I was concerned that perhaps your strategy had backfired, I was sure you did the right thing. Eventually, as the relationship develops, you will disclose more, but KayTar deserves the chance to go over to a house and play without her whole medical history hanging around her neck.

RazzberryMomma said...

You're an amazing mother and you have amazing children. I'm so glad that the kiddos were able to go and have so much fun. :o)

Beck said...

Our boys sound VERY similar. I'm glad BubTar has found a good buddy.
The Baby has yet to visit a friend without me, and I'm not sure how we'll handle that when the time comes - but I like the way you handled it, and hope that I follow your lead.

natalie said...

Once again, you're an amazing mom. I think you did the perfect thing. You've equipped KayTar to handle new situations such as that. You were close enough in case of an emergency. Perhaps if you'd been going out to dinner 45 minutes away, more information might have been necessary.

I'm so glad BubTar has made such a neat friend!! And a friend for KayTar included...incredible!

Gizabeth Shyder said...

Congratulations mom! What a big step. Glad it worked well for both of you - sounds like you had all the right things going on in your head.

Christine said...

i'm glad bubtar has found a friend and the kaytar is spreading her wings, a bit.

xoxo

painted maypole said...

so glad it went well!

~aj~ said...

I just can't get over how perfect these friends are for BubTar and KayTar. And to think they're just down the street...perfect!

Cori said...

I am so happy they made good friends & so close :)