When you are in the world of special needs there are times that you have a nice clear path. Say that you know your child will be entering a preschool program. Or you know that you have found a speech therapist who will begin working with your child.

That is nice, a plan

Then there are the many, many times that you sort of know you are on a path, but you really feel adrift Maybe there are issues at the school or that new speech therapist? Well, she isn’t really meshing with your child.

That is when your plan unravels

That is when, in my opinion, as a parent or caregiver to an individual with special needs, you can feel so very lost, and sort of anchorless. And you get to action to fix it all.

I know that on our journey with our daughter, Elizabeth, I have had my emotions run that gamete. From places of certainty to places of complete confusion. Sometimes in all in a day.

For those who don’t know, my daughter, Elizabeth has special needs. She has SPD ( Sensory Processing Disorder) and Global Dyspraxia as well as an auditory processing disorder. These disorders are complex, and are different for each individual who has them. These disorders affect her, each day, everyday. In all she does really.

But let’s be honest, it is hard to get those who work with our children to GET them. And not just GET them. REALLY GET THEM. So much so, that on a day that they are struggling, they will know the WHY of it and how to help them. And will NOT write a note home asking us why this or that behavior was present today. Or asking us to have “Elizabeth stop hiding behind a chair and join the circle time”

So for us, it was learning how to help others understand our daughter and her needs.

And it was not easy then and it is still not easy now. But we do it.

Just like you.

Everyday

But just as I have learned to become a strong advocate for my daughter, I have learned the value and complete need for self-care.

Self Care is Essential

It can look like a walk each day or a cup of coffee with a friend.

It can look like a few minutes in the morning to say prayers or meditate.

It can look like ordering your favorite take out one night instead of cooking.

But the point is you are worth it and you need to care for yourself and not feel bad about doing it.

In the world of special needs and the crazy emotions we feel, sometimes it is finding the familiar, the friend, the coffee shop you love, your favorite Bible reading or your favorite dinner that can bring comfort, help you really exhale for a moment and regroup before you go back into the fight.

I know for me exercise is one of my big self care things. I was biking last week and I was sort of going a bit longer of a ride and turned down a street that had a big hill on it. I hadn’t been on this street in a long time but I remembered that if I could make it up the hill there were 2 blue lines (marking either a gas line or something) at the very top of the hill.

When I got to the 2 blue lines, I KNEW I would be ok because I knew where I was and that I would have the energy to get home.

Sometimes it is just falling back on something familiar that brings you comfort that can make you feel like you will be ok.

Self care is that something.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.

I know as I talk about my daughter Elizabeth, who has special needs. I can go from the highest of highs over something she has done to the lowest of lows over something that happened, or that she struggles with.

As I have said before, having a child with special needs is really like being on a rollercoaster. But it is one you don’t have any real idea what it is going to do.

For those reading who don’t already know, my daughter has SPD (Sensory Processing Disorder) and Global Dyspraxia. Both of her disorders affect her all day, everyday.

But for this blog, we are going to talk about her fear of the dark. Or should I say, her acquired fear of the dark.

Elizabeth really didn’t have any issue with the dark, or lights by naturally. In fact, we used to take her to the movies often and she was relaxed and had fun.

Until she went to the planetarium in middle school for a field trip

And she was not ready for the lights to go out and for the room to be COMPLETELY DARK.

She came home and would NOT go to bed that night

Or the next.

And it was probably on the third night that we put on all the lights she wanted on and she fell asleep.

And so it began…. Her fear of the dark.

This is where her sensory issues show themselves in that she will NEVER, EVER not be worried about the dark. For her, she remembers FOREVER, the feelings she had that first time in the dark and will not disassociate from the feelings.

As she has grown and matured, she has gotten good at telling us what she needs to sleep well in hotel rooms or when she stays somewhere. Because let me tell you we have had some vacation experiences that only NOW are funny. And when the weather gets bad, she will ALWAYS ask if the power is going to go off.

But those with Sensory issues can and probably will always remember the emotions associated with an event or experience. So that is why ending things on a positive note will help the next time they will have a similar experience.

Hence the fear of the dark.

From an experience so very long ago.

Now flash to two nights ago and this huge storm that blew through our area. We were told to expect bad weather, but you know sometimes it just doesn’t happen.

But at 1:00 am it did arrive. With 80 MPH winds and the lights began to flicker. On and off and then off.

And it was then that I went to get a little battery powered lantern and put it in her room. Her room was probably the only little beacon of light in our entire powerless neighborhood at 1:15 am

It was amazing that she slept through the storm, but I heard her rumbling around somewhere after this time, so she knew the house was dark and she was fine.

And in the morning, she ambled down to say good morning and I asked her how she handled the lantern in her room and the dark and did she hear the storm.

This was the nice beginning to our conversation that morning. She told me she didn’t like the power being off and her lights being off and asked if it would be back on tonight.

I loved that she was not upset, just talking and that she could see the solution to the problem (the lantern) and that she was talking it through.

I think sometimes, as we are so busy with our beautiful children, that we sort of antipate things to go a certain way. Probably due to past experiences but isn’t so simply wonderful when it doesn’t.

When it goes in the way that, well? just makes you happy. And all the hard work you do for your child is showing. They are growing and achieving.

Which is the whole deep in our hearts wish each day.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes in Herself