The question is often asked, “What do you want people to know about parenting a child with Sensory Processing Disorder?”

My immediate reaction is kind of like an explosion of information in my head, not unlike the finale of a fireworks display.

So after the embers settled I came up with the following thoughts:

THESE ARE THE THINGS I WANT OTHERS TO KNOW ABOUT PARENTING A CHILD WITH SENSORY PROCESSING DISORDER

IT IS SCARY AT FIRST…AND EVEN AFTER THAT

No one can tell you how you will feel when you “know” something is not right with your child. No one can tell you how to feel when you find out just, what is “wrong” with your child. Finally, no one can tell you how to stop feeling scared. Trust me, even after 19 years, I can still have nights where my thoughts roam to the future and I can still feel scared.

IT IS LONELY

I find it funny, for as common as Sensory Processing Disorder is, for as many people I see on social media who have loved ones affected by it, I do not know one person close to me that has had their lives affected by it. Let alone, as significantly as Elizabeth was. So I felt quite alone on this journey. It was hard to go to play dates and functions with neurotypical children, and watch Elizabeth struggle to play, or talk, or to try new things.

I WANT TO TALK

It is kind of a weird thing, but I want to talk about my daughter and her disorders even though I know others may not truly understand. I know I have engaged in a myriad of conversations about other people’s children. We talk about their activities and lives, and during some of these talks, I can start to feel overwhelmed. I start wondering if Elizabeth can or will do the same things. It is then that the need to talk about her and her growth or struggles is almost overwhelming. I want to talk about our life with Elizabeth.

I guess what I am saying is, please ask us how things are going for our special child and ourselves and we will be so thankful to have you listen. The best thing that you can do for a parent of a child with special needs is to just be there and listen, listen to all the hardships, all the hard work, and all of the triumphs.

MY TIMELINE IS NOT YOUR TIMELINE

I know all the developmental charts have ranges of time that certain skills should be attained. (Just for the record we usually fell on the late end of normal, okay, past the late end of normal.) But as children get older certain things get done at certain times, even though there is no more chart. Braces for instance, in our neck of the woods, children get braces as early as elementary school. Elizabeth got hers on in when she was 14 years old. I was beyond excited that she could do this because, up until a certain point in her life, visiting the dentist for a simple cleaning would result in more tears and screaming than any poor dentist should have to endure in a lifetime. So those braces on her teeth made me smile! I will rejoice when she gets a license even if it is way past the age of 16. It all makes me happy so even though some say certain things are done at certain times, I say I will listen to Elizabeth’s timeline.

I WILL CELEBRATE EVERYTHING

I will celebrate all accomplishments from Elizabeth. I will celebrate the smallest of them, think writing her name in cursive. As well as the big ones, such as Elizabeth learning to ride her bike at the age of 17.

I will also completely get that others may not do this to the extent I do. I promise I can live well off of one of Elizabeth’s successes for a long, long time.

THERE ARE MANY GIFTS FROM ELIZABETH, SO PLEASE, NO PITY.

Such a clear perspective on what is important comes directly from being the mom to this amazing child. But there are more gifts, and they show up when you are not looking for them. And I make sure to take a moment to give thanks for Elizabeth.

Our oldest and youngest children, Emily and Michael, are two of the kindhearted children I have ever seen. They befriend those with special needs, and they stand up for those who need the support. I truly feel that those wonderful traits are indeed just two of the many, many “gifts of Elizabeth” Please know that the gifts we get from our daughter make all the work so very worth it. Please don’t pity me, just know we are blessed.

I WILL NEVER BE WHO I WAS BEFORE.

In my book I write that I have this imaginary line between life before a special needs child and life after Elizabeth was born. I was one person before and another after. This is so true. I have found on this journey that I am stronger than I ever thought I could be, that I am quite the advocate. I know I would do whatever it takes to help Elizabeth continue to grow and achieve. True, I will never be who I was before but who I am now is who I need to be. And this person simply and truly loves this special child in her life.

Perhaps I could hear some of your thoughts on what you would like people to know about life on your journeys. Please let me know in the comments.

I wish you all a peaceful week.

– Michele

10-9-8-7-6-5-4-3-2-1….Happy New Year! And with the change of the calendar, so comes the automatic lists of New Year’s Resolutions.

It seems everyone makes them. The young, the old, those who want to fine tune their lives and those who want to almost completely revamp everything. The funny thing is that for most, those resolutions are forgotten or broken by mid-to- late January.

I have never been a real resolution kind of person, even before Elizabeth was born. I guess my logic was always why wait until the start of the year to make changes or adjustments?

Why not try to make those changes on say, a random Friday in June. In other words, we don’t need to mark positive adjustments as things we do ONLY when the ball has dropped and the calendar has flipped.

It is funny that I was not this kind of person even before Elizabeth

When you have a child like Elizabeth, who has special needs, you find your life changed forever. The clear cut outline of developmental milestones and “baby’s firsts” are replaced by the ever changing needs of your child’s special needs. No longer do you look at the charts and know what should come next. You, instead, look at your child and wonder “what should we DO next?”

We are some 19 years into our journey with Elizabeth and as such, we have honed the skills of both assessment and adjustment.

We have become veritable professionals at keeping our eyes on the happenings of today and yet, still be able to plan for the next step.

We have been at this for so long, that I cannot imagine doing things differently for Elizabeth. I must admit, I often wonder how it would be to look at a new school year as simply the opportunity to get some really cool new school supplies ( I ALWAYS loved new school supplies….a new school year? not so much… but the supplies? YES)

New clothes and starting fresh, instead of the checklist that we all do, which is

-talking to teachers about our child

-hoping they get it

-hoping they are listening

-sharing information with our therapist

-marking our calendars for the ever looming IEP meeting.

But this is the reality we all have to help our special needs children. And truly, we would do anything for these special children!

But back to the whole resolution thing, we have to adjust as needed, fix things, arrange things and make changes when we need to. Therefore, aren’t we in a way doing the same thing as others do on January 1st? We cannot afford the luxury of waiting for the crystal ball to drop to make positive changes in either how we see things, do things or function.

We are required to do them when the time is now.

So, yes, I get it,

-We are not planning a new fitness routine for our child with the hopes that they drop those last, pesky five pounds, but we are planning sensory diets that change often.

-We are not vowing to put our child on a diet, but we do have to keep offering new foods to those picky eaters or to those on gluten-free diets.

-We aren’t promising to “think positively at each moment and breath through the stress” But we do have to keep talking ourselves through many tough and heart rate raising moments.

So for the moment, realize all you do as parents and caregivers to these wonderful amazing children.

And allow yourself the luxury of not officially making resolutions because in reality…you already do them…and unlike those who try and let them go in mid-January…you keep them going each and every day.

I wish you a calm start to a new year.

– Michele Gianetti
www.michelegianetti.com

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