Monday, November 25, 2013

Of Course You'd Die For Them, But Would You Live For Them???

So tonight was the night I was going to speak to the Boy's teammates at the Y.  Swim team has been a little rough for the Boy.  He started later than the other kids this season because of some other issues, but we knew this was where he belonged.  Swimming is his passion.  Swimming is where he feels free.  He doesn't care about times or if he wins a ribbon (even though he was elated last year when he received ribbons at two different times), he just wants to be in the water.  He wants to be with his friends.  There was an incident of bullying at swim practice.  It broke my heart & made me mad at the same time.  I knew I had two choices: I could take all three of my kids & crawl into an underground bubble where no one could reach us, or I could do something productive. 

I chose to do something & HOPE that it would be productive.

After speaking to Coach Jake & Coach Ali, I determined that they were willing to help in any way that they can.  They asked me if I would be willing to speak to the team.  Of course!!!  He doesn't know the ins & outs of advocating for himself yet, so of course I will!!  I was told that 15-20 minutes at the beginning of practice was what I'd be given.  15-20 minutes?!?!  Where they crazy?!?!?  I can talk about this subject for hours on end, how was I going to discuss it in 15-20 minutes???

I got to work & started writing & rewriting what I would say.  I remembered as much as I could from when I took Intro To Public Speaking in college.  I found my index cards. I asked his psychologist for advice on how to do this.  I spoke the supervisor of Autism Services with our public school system (she knows the Boy, & I thought she might have some helpful tips). 

I had everything ready for tonight.  The Boy asked to be in another room while I was speaking (yes, he approved me speaking to the team).  This is how they did it when they spoke to his class at school earlier in the year.  He shares information about his Aspergers on HIS TERMS.  He says it's embarrassing to be in the room while people talk about him.  I respected his wishes.  He waited in the lounge; I told him that I would get him when I was finished so that he could join the team for practice.

But I was worried.....

I wasn't worried about what I'd say, I know this child better than anyone else (it's my job).  I was worried about kids not wanting to listen.  I was worried about them being naughty even after knowing what I was about to share with them.  There is a potential drawback to sharing this kind of information, and it is the reason that many parents choose not to share their child's diagnosis with others unless it is absolutely necessary--they fear it being used against them.  I am the opposite; I want everyone to have the information so that they may be a friend; so that they may understand why he is having a meltdown; how they can help.  For them to know that if they do in fact use this against him, then they are informed, but CHOSE to be a bully, & that there would be repercussions.  Someday he will know how to advocate for himself, but until then, I must do the best job for him that I am able to do.

It was time, & I walked onto that pool deck....

I excused myself for a moment to spit out my chewing gum before we started, while Coach Jake explained why they were sitting out & not swimming at the moment.  I must state right here that I love both of the coaches, but there were a few moments last year that I wasn't their biggest fan; a few hurtful (although not intentional) things were said to me--in hindsight, I know that they were confused & frustrated by the Boy's actions & didn't know what to do (his symptoms were intensifying at that point, & we didn't receive a diagnosis until February 1, 2013).  But these past few weeks have shown me that these two people care about not just having a great swim meet & helping kids to improve their strokes, they care about the other aspects of these kids lives too.

Jake started out, "When we are on a swim team, we are here to improve our times, right?  We are here to do our best, right?  We want to go faster than the person in the lane next to us, right?  Even thought we do things individually, we are a team, right?"  It was silent.  His voice boomed, "RIGHT?!?!  WE. ARE. A. TEAM.  We WILL help our teammates & encourage them to the best of our abilities, right?"  There was no silence this time.  They were in agreement with Coach Jake.

I took my speech & crumpled it up.  It was time to speak from my heart.

I told them about Autism Spectrum Disorder.  I told them about Aspergers & how it is a form of Autism.  I explain how the Boy's brain operated differently than theirs. I share ways that they could help.  I asked if any of them had Circle Of Friends at their school.  Many of them knew, & they were almost there.  I took the Lego's & Duplos out of my pocket.  I explained how some people's brains are Duplos, & how some people's brains are Legos.  Duplos fit with Duplos.  Legos fit with Legos.  The Boy's brain is a Duplo trying to fit into a Lego. (By the way, this is HIS explanation, not mine).  I explained what a meltdown is & what to do if the Boy has one.  Then I paused for a moment.

Hands went up---they had so much to ask.  So much to share.  They talked about the things they have in common with the Boy.  My Boy.  They talked about how to be his friend.

One little boy even said, "if he is coming in last, I can slow down & let him win."  I was so touched, but I told him that that wouldn't be necessary, as everyone is here to do their personal best.  "How about if you finish before him, you encourage him, no matter what his time is?"  He agreed he could do that.

The Boy joined his team for practice.  He had a great time.  I had a Mom stop me & say, "you'd die for him, wouldn't you?"  My reply?  "Of course I'd die for him, wouldn't we all?  I just need him & his siblings to know that I am choosing to live for them, so that when they are adults, they can do the same for their children.

So now it's up to me to teach him to advocate for himself so that he can be a happy & productive member of society who knows that he is loved beyond measure.  I think that I need to do whatever I can to help others who are just beginning their journey on the spectrum.  They need to know that it is so scary at first, but that it will not always be so scary.  If they need me to help them find their voices, I can & will do so.  I never thought I could do something like that.

The Boy taught me otherwise....


  1. This brought happy tears to my eyes! Good job! I need to take lessons from you!

  2. I am so sitting here tears rolling down my face . that was so great I am sorry I missed it. You are a great mom

  3. You were an ultra sensitive child, and had this incredible ability to roll with the punches. When something bad happened you'd cry and sulk for awhile and then you moved on. I saw you do this over and over. The only things I can remember you hung onto were bad feelings about mean and nasty people that even after confronted remained mean and nasty people. I am so proud of you and your abilities and happy you are Sam's Mom. I am also happy Sam is my grandson. I love you and him so much.

  4. I'm so happy that the coaches were on your side, willing to let you talk, and got their attention before you did. The Lego/Duplo analogy is a great one!

  5. What an amazing story. Great job, mama!