Elizabeth is my daughter with special needs. Specifically, she has global dyspraxia and Sensory Processing Disorder(SPD) These disorders affect her life each and everyday and if I am being honest, probably every minute of every day. I can see her hard work as she navigates the twists and turns of an average day doing the things that we all “just do” with such effort. But she never stops trying and growing. But we need to be honest, it has been a long journey to say the least.

I can remember the day when I learned about her disorders……I can remember that it was NOT an easy thing to accept….and I can remember the feeling of understanding once I did.  and it is that this path we are on….this journey…our road…is a marathon, not a sprint.  That SPD and its dyspraxic component are part of your child forever.   That there will not be a day that it is simply gone.  We need to know this to realize all we do for our children will make a huge wonderful difference in their lives.

I think knowing this is almost liberating, it kind of takes the urgency each day, out of each therapy, out of finding THE answer, out of trying to FIX something that really isn’t broken.  If you can accept this piece of information and allow yourself to do your best each day for your child, then you are in the marathon.  If you feel that urgency, that fear that you have to try this next idea TODAY!, then you are in the sprint.

Please know that I have been in the sprint many times….and each time I fall back to that philosophy, I feel that upset feeling, that nervousness and I have to talk myself back to being in the marathon.

When you are in the marathon, you can take each success and celebrate it, even it is as simple as your child eating a bite of something that used to make them scream.

Being in the marathon is NOT losing it when your OT appointment has to get moved…it is rescheduling it and realizing that maybe a bit of time off that week for your child to be a child might not be too bad of a thing.

Being in the marathon is walking side by side with your child, and enjoying them for who they are and all the great things they bring to your day.

Being in the marathon is losing the constant drive to get everything in in a day.  That realizing you CAN relax a bit and if you have to skip one thing today, it really is O.K.

I think my story that happened yesterday will illustrate my point.

We have been working on safety skills for Elizabeth. What do you do if……. questions. So that when she is in the world and something were to occur, she would have the skills or tools to help herself be safe.

Sometimes, it is as simple as just knowing who her “go to” person is. While other times, it requires she do certain things. We have put them all on her phone to help her and are going over them many, many times.

We also introduced a personal alarm for her to put on her purse, backpack, and to hold if she is walking. We went over what to do if you need to use it and how to use it.

So flash back to yesterday, it was an unually warm Ohio day, so Elizabeth went outside to sit on the swing and in keeping with the new safety focus, I handed her a personal alarm and out she went.

All was well.

Until, I start hearing a weird sound.

I opened the window and YEP

The alarm was going off

And Elizabeth was just relaxing.

UMMM?!?!?!?!

Well, we got the pin back in. Got the sound to stop. Made sure she could still hear ( joking). And set down to discuss just what occured and why it can’t again. And to practice using the alarm.

Marathon

Not Sprint.

In the world we live in today with its fast paced, social media based, share EVERTHING philosophy, it is quite typical to post a question and receive an answer or 50 in under a few minutes.  Any of the answers can be helpful or none of them could be the right fit.  But the idea is to solve the problem, fix it, and then the attention moves to the next question that appears at the top of the page.  This can be helpful for home repairs or even other health concerns but with special needs that is your entry ticket to join the sprint

 I hope the marathon sounds like the much better race to be in.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes in Herself.

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