Archives for posts with tag: time

Something we have taught Elizabeth, quite early on in her life, is the importance of knowing her feelings and emotions.  Being able to identify what she is feeling has helped us help her on her journey of life because emotions and feelings are complex things and learning to talk about them is complex as well.

This goes for all people and more so  for those with special needs, like my daughter.  Her disorders are sensory processing disorder (SPD) and global dyspraxia.

So with all that being said, last night was a night that she and I had one of our chat times because  I could see how much she appeared bothered by a certain topic.  Each and every time this topic arose, she would get angry and or look nervous.

We needed to talk and talk we did. We had a pretty good conversation and a pretty good understanding from her of what she was feeling, which led to a pretty good understanding for me.  All in all a success.

Ah!  The world of feelings!

So as I was getting up to leave her room, I turned to look at her and she was smiling at me, with those huge blue eyes looking beautiful and bright.

Those same blue eyes I used to look at when she was a year old and screaming or when she was two and still screaming and when she was three, new to therapy, but calmer and so much less afraid of the world.  And on and on she grew and on and on those blue eyes shined bright.

I looked into those eyes then and knew!  I just knew she was in there.  It was my true feeling.  No matter who told me otherwise.  No matter who told me that we “simply had to do this or that.” No matter who told us:  “Don’t do that, hand her over to the experts or you will ruin her”   (This was truly said to me by a member of our school system years ago)

But no matter what was said, my feelings when I  looked into those bright blue eyes has fueled me and my family on this journey.  Not a smooth journey and not a completed journey, but everyday so far on this journey!

One time, when she was 2 and a half years old, she pointed to the cookie jar, she wanted a cookie. she made a random sound, then cried when she could not be understood.  I can remember giving her the cookie, probably so that she would not cry more even though she probably had like 10 of them, but I can remember her eyes twinkling as I handed her the double digit cookie, kind of like Yep, I got another one from the mom of mine.  There was mischief in those eyes!

When we are at church, a mellow song will come on and I will see her eyes brimming with tears, so beautiful and expressive!

Yes, it is those eyes that gave me the feeling that strengthened me and made me want to do more for her!

I write this because we are all on our own journeys.They are all different, but share the same drive to help our children be the very best they can be.  What motivates, fuels, drives or strengthens you will probably be different from the next special needs parent or caregiver but whatever it is,  it is yours and please don’t let it go.

Listen to it.

Hold on to it.

Use it when times are tough or the journey is uphill.

Or when others tell you “you can not”.

Hold on to it because it is yours and no one else is on the exact journey as you.

I know I am thankful for those bright blues eyes, because I got my strength from the feeling they brought to me and I do not plan on ever letting that feeling go.

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

 

 

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We have a chalkboard on the wall in the kitchen.  Typically, I would put little sayings on it from time to time or I would forget and leave something up there for way longer than it should be.  But the chalkboard has seen some new life this month because everyday day Michael is using it to do the official countdown to Christmas.  Basically what you see are the words.  “Days until Christmas” then a smear of erased chalk marks and in that smear, the current number of days left.  He is excited for the holiday and all it represents and brings and of course, time off from school!

And as much fun as it can be to have everyone off from school, it does pose certain challenges especially for our children with special needs.   The schedule that you have in place is not one you will most likely have this week off.  I know that for us, a bit of planning for this week was very helpful to make it as fun and calm for Elizabeth.  She is our daughter who has special needs.  She has Sensory Processing Disorder ( SPD) and Dyspraxia.

So I thought I would share some of planning we did for Elizabeth.

KEEP THE DIET

By this I do not mean anything related to the wonderful holiday cookies. I am referencing the sensory  diet that so many of our children have.  It is hard to maintain it with a vacation week but it is so very helpful to try your best.

If your child typically needs a break mid afternoon, maybe try your best to allow for that time for him or her.  Or if your child usually has some quiet music time in the morning, try your best to make sure that your day’s schedule will incorporate this.

When you are planning your week, allowing for and adjusting for these sensory needs helps your child enjoy the week as best as they can!

SCHEDULE

By this I do not mean make a schedule that is so full!  It means make a schedule of your week.  One that is done together with your special needs child.  For Elizabeth, a visual learner, this type of schedule that is right on the table and can be referenced as needed is very important to her and her days.

On the schedule we write down any and all things we are thinking of doing.  We write down times and who will be going.  We also write down what we will be doing for meals on those busy days so that if we are planning to go out to eat or order in, she can voice her opinion of what she wants. ( and trust me, she does!)

The point is that having a plan for the week helps keep the anxiety down.  It takes away the “what-ifs” and gives her time to plan for and adjust to this time off.   Because we all know that changes and transitions can be challenging to our special children.

TALK

Elizabeth and I do this all the time. We talk about her feelings, anxiety, excitement and more.  We work hard to make time to do this because allowing her to talk helps her feel better when stressed or overwhelmed.  It allows her to hear me as I tell her about our plans and other things.

For us, I cannot over emphasize the importance of these “chat times”   So if you can, make time to talk during the time off.  Kind of check in with them so that if they are struggling a bit, you can help them or make changes that make the time off enjoyable for everyone.

SAY NO

No, not to everyone!  But do not be afraid to decline an event or outing if your child needs the break or looks overwhelmed.   I have said it before and will again, more is not always better.    Being honest with those who are in your life and gently declining something is really okay.   Maybe go to a plan B, where other members of your family do something and your special needs child gets to sit it out.

Whatever way it works, acknowledging the need to decline is okay.  Not always easy, but okay.

So with our chalkboard indicating just a few more days left,  I wish everyone a peaceful, fun and memory making break!

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

 

 

 

 

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