Archives for the month of: December, 2016

It is just a notebook, spiral bound to be exact.

But in it you will find my memories of my life with my children and husband.

I keep one for every child…since the day they were born.

It all depends on which notebook you grab as to where you will join in on our lives.

What I mean is, there are at least three that I have for each child.  The first one for each begins with “ I cannot believe that she is here!” Or the case of Michael insert the pronoun “he”.   And the notebooks go on from there.  I have the first words said, first steps, first haircuts, well you get the idea.  But the bottom line is that in each book are memories.


-We all want to make them good ones.  

-We all want to remember those great ones.

-We want to share them with others.

I chose to keep mine in these notebooks.  Every so often I will reread certain parts because unlike a scrapbook, mine is like a journal.  So it tells a story.

Reading Emily’s is fun because she was the first born and we were literally clueless as to what to expect.  And it is fun to read how we found our way.

Reading Michael’s is fun because he is the last child and a boy.  And I say this because so many of the journals involve him crushing lego buildings or smashing crayons instead of coloring quietly like his sisters used to do.  

But reading Elizabeth’s takes me on a walk down memory lane that can be a bit tough.  Looking back to where we started can still scare me.  Putting the current me into my old self, and I find I am scared.  Scared of not knowing what she has, how to help her or even how to get through the day.  But reading further and I start to see the successes come.

The words begin to be said and she is beginning to show the world who she is.

After I am done, I usually take a good look at where we are and give thanks.

I take another minute to really think of all she has accomplished.

Some people I know are afraid to look back at their memories.  They tell me it is too emotional, “it is too much for me to think about those things”.  I tell them that I do understand their feelings, but that for me and those who have a special needs child, sometimes looking back helps you realize just how far you have come.

…Sometimes looking back lets you see just how much farther back those hard times have become.

-Michele Gianetti



“So what do you want to do over Christmas break Elizabeth?”  Such an innocent question.  One that if asked to any number of typically developing children would elicit  answers that range from asking for unlimited television watching, to some serious time to sleep in and lastly a  mind numbing amounts of video games…mostly Xbox one.  I did the leg work here and asked my 10 year old son.

The answer I got from Elizabeth was quite different.

“ I need a schedule”

Yes, that was literally the first thing that she asked for.

It wasn’t that she did not ask for time with her family or to go out to eat.  Those came next on her wish list. It was just the first thing she knew she needed was a schedule

And this got me thinking about how much different our special needs children view the holiday break than their typical peers.

From all my experience with Elizabeth and her special needs, I have come to realize many things about time off from school.  And I will share the following, from my perspective…

THEY NEED A SCHEDULE-  bet you did not see this one coming as number one!!??   (a bit of humor here), but in all seriousness the lack of a schedule, the complete openness of time and a challenge of Elizabeth needing to fill it herself, is overwhelming to her.

When we take a break from our schedules and sigh that we have “nothing to do today”  For Elizabeth that same statement can elicit quite a lot of anxiety.

So to combat this, I make her a schedule for each day.  Not a rigid, to the minute, schedule.  Just a gentle schedule to show her what we are planning for the day as well as the things she is going to do herself.  Such as exercise, bake, listen to music.

For her having the day take some shape is extremely comforting.

As an added bonus, for us, having a flexible schedule helps to teach Elizabeth that life is a fluid thing. That no matter how much you plan, you need to be flexible and accept changes in your day.  Just like all of us.

THEY NEED A SCHEDULE PART 2-  sure it does read like the first one, but in this case I am talking about a visual calendar for the week they are off.

I use a wipe off white board calendar that has the whole month on it.

I talk to Elizabeth about the things we are going to do that will require further talking.

Like, going sled riding.

I will put it on the schedule for the day we are planning it and it allows her to see it, to know it is coming and to allow for her and us to tell her about it.

It allows her to get ready ahead of time.  And that helps her plan what to expect

All this allows her to better enjoy events that may come around only this time of year.

MORE IS NOT ALWAYS BETTER- please please trust me on this one.  The very vivid memories of a certain Christmas break many years ago, still haunt me.  

We went here, we went there, we ate out, we went to a Christmas village, we ate out again, and we watched a meltdown.  Mostly Elizabeth’s, partly mine.

All that was in one day.

All that was too much.

I have learned that some is better than all.  And that it is okay to be okay with it.

Just today, I had to tell my older brother that we could not go to Disney on Ice next week because our week was so full already.  Sure there was little part of me that said.  “ YES! Let’s make it work”  But the truth is, I know it would be too much.

So we are making plans for a quick dinner together instead.

Knowing the limits of your child and being okay with them is a good thing.  I was a bit of a stubborn learner.  So I offer this to help others.


When you make your schedule, please put these on the schedule each day.

Whatever shape it takes for your child, make the time for it.

A bit of down time is an amazing thing.  Again, trust me on this one.


Our holiday schedule may pale as compared to other families, but it works for us.

We treasure the time we have together and the successes of our Elizabeth.

So make the memories your way.

I wish everyone a good week.

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