I can remember the day when I learned it…..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, for us, SPD and its dyspraxic component are part of your Elizabeth 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, but that through their lives, their disorders or diagnosis will play a role.

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. I talked to a friend today who told me that she offered support to a mom whose 8th grade daughter has special needs. The mom of this young lady was feeling all sorts of things as she watched her daughter graduate from 8th grade. My friend told her that her daughter is amazing and that helping her navigate the world is what is important but never trying to fix her daughter’s special needs. Because you have to fix what is broken and her daughter, my daughter and your child with special needs are NOT 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.

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 SPD and dyspraxia and any disorder that your child has, it enters you in the sprint.

I offer this out from personal experience, and many many years in this marathon.  I hope others will leave the sprint and enter the marathon….it is a much better race to be in.

Have a good week

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