What is Joubert Syndrome?

.routine.

I have to say it....

I enjoyed the holidays but I am so thankful to have routine and order back!

I loved the holidays this year. The awareness the boys had to Christmas. The joy on their faces opening presents. The late night conversations with family. The lingering after dinner and the countless memories made.


But....

I love the predictability and order that comes with the New Year. I love cleaning up the Christmas decorations and having a neat and {somewhat} clean house again. I love that school is back in session, that therapy appointments are back to normal, and that I can feel like I have some control over our lives. 

Even if its just a teeny tiny bit of control :)

I am currently reading a book right now called "Shut Up About Your Perfect Kid: A Survival Guide For Ordinary Parents of Special Children" by Gina Gallagher & Patricia Konjoian. It's a funny book that pokes fun at the reality of typical and special children alike and about the rollercoaster ride that we are all on as parents. 


One of the lines I read the other day that really resonated with me was this:

"But when you have a child with a disability, you simply have no choice. Change is part of our everyday life. We never know what each day will bring, or what crazy direction life will take us in."

And I couldn't have said it better myself. 


While the holidays were a lot of fun, it was also hard. Being around people all the time, changing up the boys sleep schedules and putting them into new situations constantly was tough. Especially for Parker.

We never knew how he was going to react or what would be a trigger to set him off, but I was constantly on edge- trying to make sure everyone was okay.

I try to make our lifestyle as normal as possible. We still go to the park, go to loud places, bring the kids to friends houses, drop them off at church, etc. It is a lot harder than it would be with a typically developing child, but I want my boys to grow up in a realistic environment. To learn to adapt to their surroundings even though it might be more difficult for them. 


And we kept it that way through the holidays. Still went to Christmas parties, had babysitters, late nights, loud and crowded places, etc. And for the most part they did amazing! Blew my expectations out of the water. 

However, towards the end of the holiday season I could tell it was starting to wear on them. Heck-it was wearing on me!!

And I think we were all craving some consistency. Some normalcy. Some routine.


With routine, I know more of what to expect. I am able to help keep Parker's fits and behavior {somewhat} normal and predictable. And I can kind of know what to expect for the day.

And that helps me cope with the unpredictability and unexpected situations that are a part of special needs life. 

So as much as I would love to keep up the spontaneous, fun and glamorous life we experienced during the holidays, I am perfectly content with my boring, predictable, and routine normal life :)

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