Archives for category: Awareness

We do the countdown to zero and then officially another year is in the books. And the new year stands before us all bright, shiny and fresh.

What will the year bring?  What will we do with this fresh new start.  So many of us participate in that yearly ritual called NEW YEAR RESOLUTIONS.  You know those things we promise to change, not do or add to our lives.  It is a way that we acknowledge this new start.

I am not really one of those people who do these resolutions,I think earlier in my life, I may have subscribed to these as I promised to always do my homework early, and to watch how much chocolate I was eating. They did not last long as I loved to watch too much T.V. and I absolutely love chocolate.  But you get the idea.

I think as I have gotten older, I have stopped participating in this because life gets more complicated and that one and only day to change things just is not enough.  Life requires switching, adjusting and planning all year.

Now flash to the day Elizabeth entered our live.  She is our daughter with special needs of Sensory Processing Disorder and Global Dyspraxia.  She did not talk until the age of five or walk until way over two years old.  She challenged us in so many ways, ways that we did not know existed.  Life with Elizabeth required changing and adjusting on a near to daily basis.  Sometimes, even hourly.

Resolutions may be a good thing for some but  those who have a special needs child in their lives know that life’s needs and changes cannot wait until the calendar say:

January 1

We need to think about our child’s needs each day.  Adjust to their current moods and emotions.  Promise ourselves we do a certain thing tomorrow.  It is like our resolutions happen each day and almost are required to happen everyday.

I love watching television on January 1st because so many of the topics involve how people will make this “THE BEST YEAR EVER”  be it by eating better, working out more or managing life’s challenges better.  It is funny but the perspective I have about what makes the year the best ever is so very different than most. I can include the stuff mentioned but also includes: Will Elizabeth do well in school? Achieve more independence? or Master a new skill?  These are some of the inherent questions and evaluations that go through my mind as I look to a new year.

Having a child with special needs changes all things and at times like this, the difference is felt even more so.   So for those who tune into the “Rocking Eve” show this week, know that you are not alone when you wonder about how the new year will go or how well the last year went.  I am with you.

I know that our individual journeys are very different but they do share the same goal to do the very best for your child each and everyday.  And those days become years. And those years are marked by the celebrations we will all see and go through in a few days.  But knowing you would do anything in the world for your special child, will fuel you to face another year with the strength to adjust, work and plan to make the year all that it can be!  I know I will.

I wish everyone a peaceful start to 2019!

Michele Gianetti author of “I Believe In You: A Mother and Daughter’s Special Journey” and “Emily’s Sister

 

 

 

 

It is a common question these days.

It is asked in almost every conversation.

” Are y’all ready for the holidays?”

It is usually asked in a casual manner, not unlike when someone asks how you are doing and you answer “fine” because it is expected ( and if you really answered it, you would need them to take a seat, get a snack and settle on in)

So even though it is a quick question, for me, it holds more weight.

I think this is because of my daughter with special needs.  She has Sensory Processing Disorder (SPD) and Global Dyspraxia.  And these disorders affect her life each and every day.  In different ways, forms, and intensity as she has grown older. But they are still there.

So when someone asks that question, I think,  Am I ready?

So here are a few things I do to help get ready for a really busy time.

I talk to those family members and friends who will be with her a lot

I did not always do this.  I thought I could just get through the event or dinner myself.  Maybe because I did not know if they would believe me or give credit to what I was saying.  And maybe because I thought I could handle it all.  But whatever the reason, I am here to say that that mindset does NOT work well at all.  The needs of your child will be there and may be magnified by the change in food, sounds, faces and schedules.  So talking about your child’s needs is a huge help.  Telling these same people, how the disorders many show themselves helps too as does telling them what you might need to do to help your child if they are anxious or having a meltdown.   This takes away the need for you to talk and explain as you are trying to help your child.  Been there.  Done that.  Do not wish to do it again.

I talk to Elizabeth about her schedule and write it down

I may not have written it down years ago. But now we do. Together.  And we talk many times about what to expect, who she will see, what time we will go.  And most importantly, and if you know Elizabeth, you would agree,  what food there will be and what food she can pack herself.  Any and all things that you can tell your special needs child will help them as they can prepare themselves for transitions and anticipate what will happen next.

I have learned it is okay to say no to something

This is hard because the holidays are like fun on steroids.  So much you can do, see and experience.  But as I have learned early on in this journey with Elizabeth is that more is not always better.  There is a limit that our children have and recognizing it and respecting it is critical.  I learned that the hard way and I still do not like to talk about the Christmas tree walk we took a few years ago.  But I digress,  but in my opinion it is so much better to fully enjoy one good thing than push through four.

Make memories

I know this one sounds like a no brainer.  But the truth is, we are all hit with pictures and movies showing the ideal and perfect Christmas.  I have learned that, in our world, we celebrate all the successes and good things that happen in our family’s life.  Are we perfect? Is our Christmas worthy of a Hallmark movie?  Absolutely No.  But it is ours.  It is our way and it makes our hearts happy.  So we make memories our way. Those who have a special needs child in their lives will completely get this point.   So make as many memories as you can and tuck them away in your heart.

The above things all still fit into my plan to “Get Ready”

I wish everyone a peaceful week

Michele Gianetti  author of “I Believe In You: A Mother and Daughter’s Special Journey” and “Emily’s Sister