Day #354 – Don’t Give Up

Today was our family reunion and I can’t help but to smile – smile so, so, so much.

I actually love family reunions –  have THE BEST cousins in the world.  Seriously – the best.  I feel so blessed to have grown up with a huge family – on both sides.

My fondest memories are of wrapping paper fights, my uncle running us down for birthday spankings, Great Aunts and Uncles still knowing your name and asking how school was going.  It’s a bit like the Cleaver’s – only A LOT louder.

Our family reunions 10 years ago were full of stress and angst.  Full of glares from elders and others trying to ‘reign in’ my child.  It was filled with meltdowns and worries about food.  It came with nap preparation and leaving early or coming late.

Actually, we often didn’t go because it was just so much, too much.  This made me sad because I really do dig my family.

Let me tell you how this year went.

First, so many of my family members commented on my blog.  One of my cousins hugged me and said, “I know I haven’t seen you in awhile, but it seems like I see you every day.”  Seriously – how heartwarming is that?

We were able to prepare Tucker – and we began yesterday.  Not only did we talk about the reunion itself, but he was part of the preparations.  I think this helped him not only understand what was going to happen – but how it would look.

This morning arrived and he was a trooper- helping with all the things we asked.  I was frying fish (from my Aunt and Uncle in Alaska) and he asked to help.  So – I taught him how and he continued to fry.  He knew – he knew I expected him to be a part of the party…but it was okay to be on the sideline.

Then I watched – I watched as people said hello to him.  I watched as he nodded and half-waved.  I watched as people struck up conversation.  I watched as he left and went back into the house. He began asking what time we were leaving – then continued asking what time it was.  I gave him my phone so he could keep track.

When we left we got 10 miles down the road and he began stimming.  The form?  Not rocking. This time it was repetitive – hitting himself in the face.  He was tired, he was overwhelmed – he was done…we left just in time.  Often the stimming will end once his sensory system has reached an equilibrium.  This time it lasted about 10 minutes with no end in site – so I handed him my phone again.

He stopped the self-harm – but with phone in hand began rocking in his seat.  I looked at my husband and said, “I’m not surprised – he did such a great job today.”  Then he told me that he and Tucker had been ‘making deals.’  He would go in the house and Matt would tell him what time he needed to come back outside (and for how long) and be social.  He would come out, stay for a bit, and then leave.  This happened all day long.  How lucky am I to have this man in my life that works so hard at understanding and doing what’s right for Tucker?

It’s not about being lucky…it’s about being blessed.

Fifteen minutes later he fell asleep. My dad sent a text asking how Tucker was doing – making sure he felt okay with the day.  I smiled because that wouldn’t have happened 10 years ago.  Not because my dad didn’t care…but because he didn’t know.  Now he’s quite aware of how difficult a day like today is for his grandson.

When we arrived home he grabbed his iPad and headed straight to his room. I haven’t seen him since – and I’m leaving him alone until bedtime.

It was a beautiful day and here is why I wanted to write.

Parents – don’t give up.

Please don’t give up in your sensory diets and accommodations.  If we consider where we were and where we are now it feel like  light years.  I’m not joking.  Keep working at it – keep developing an understanding of what works for your child.

Please don’t give up pushing.  Push your child right up to the limit.  Make deals – it’s okay…it’s important that he is a part of the ‘bigger’ thing – but it’s more important that it’s in incremental steps.

Please don’t give up in your advocacy efforts.  The more people know the more they will understand.  The more they will reach out – or the more they will simply stay away.  Either is fine – but you know what goes missing?  The looks, the stares, the exasperation that you may feel.

Please don’t give up helping your child recognize what they need.  Tucker was able to understand the balance.  He knew when he needed a break.  He also knew that it was important to spend some time with his family – members that he knew…and members that he didn’t.

Please don’t give up.  I know there are moments where it feels like it’s never going to get ‘better.’  Ten years ago I would have NEVER imagined a day like this.  Ten years ago ago…NONE of this would have been possible.

In the iconic words of Jimmy V, “Don’t give up. Don’t ever give up.”

A day like this may be just around the corner for you.


One thought on “Day #354 – Don’t Give Up

  1. Pingback: Day #327 – Indexing | 366 Days of Autism

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