A Trip to the Library: More Than Just Returning Books

– I really loved that time of life, when my children were all small, and the day was yours to do with whatever you wanted.  You know, never having to look at the clock and wonder if you missed the bus or if you had to hurry to get your child off the bus…the day was yours.

– I loved being able to run to the library, to the park, to get ice cream ( of course, WAY before COVID)….I simply loved and still love my time with my children.

– I could go back and re-start my family again I would do it in a second.

– Life goes by so quickly

– Life was so hard when Elizabeth was that age

– I see those relaxed eyes looking back at me in the mirror not as often since Elizabeth was born…WOW did I just think that? I know my eyes tell what is going on in my heart.

– Yes! yes I did

– I can’t believe I just thought that!!!

– It is true, so why do I feel bad thinking it??….

After this mental ping-pong game I then found myself reflecting…

Quite a few memories of our early excursions with Elizabeth float through my brain at this point.  I remember the tears and fear in her eyes.  The times when going to the park was too much for her to handle.  The looks from other moms and people, who had never seen a child like Elizabeth before….It had been hard….it has been so very much work.

“Why do I do this to myself…why do I allow myself to go down that particular “Memory Lane?” I think to myself….  It is not like it is fun or helpful or anything other than anxiety provoking….but still there I was…firmly walking down the memory path, when all I wanted was to return some books.

I wonder if other parents of special needs children do this?  See the parent who is simply content…and wonder…..just for a moment…..what it would be like….what it COULD be like…to feel that calm….that feeling of lack of concern or worry about meltdowns or overloads…to walk to the car after the library and know all is well.  That there are no therapy appointments to go to, or sensory diets to complete at home….just a car ride home to enjoy.

I don’t wonder often but sometimes I do.   Maybe it is my mood of the day or maybe Elizabeth is not having a good day or maybe it is just that time when I feel tired….those are the times I do wonder or think. Full disclosure the last few days with Elizabeth have not gone really well. Hard to say exactly why and we have been doing a lot of talking. But speed bumps like these days make me have a lot of feelings……

Back to the parking lot….

I kind of busied myself at this point getting my books out of my car and when I looked up, they were gone.  Just the back of their van was visible and it got smaller and then was gone completely. And just like that, “Memory Lane” was gone…  I closed the trunk of my car, hoisted the bag of books on my shoulder and went into the library by myself.  I kind of felt tired now, almost like I had had a bit too hard of a workout.

I know I am not the same person I was before Elizabeth was born, I know I will probably never be that carefree person that I was….but on my way in I allowed myself to think that in so many ways I am a better, stronger more determined and focused person than I would have ever been without Elizabeth.

That no matter what, my daughter is worth EVERY worry and effort….that not giving up on her, fighting for  her may be harder work than most will know.  But all of it is worth it when you think that you are giving your child the best chances in life.

By the time I came out of the library and got into my car, I was feeling more settled. There was no one in the parking lot and considering how hard this memory lane thing is.  I am not going to lie..I was quite relieved!

We are all on these unique journeys, filled with so many emotions each and everyday.  Who knew a simple trip to the library could come with all these thoughts?!

 I wish everyone a peaceful week. Please wear a mask.

Holidays and Special Needs: How to Navigate

THE HOLIDAYS!

“yes….yes indeed…Santa Claus is coming to town”  and soon.

I offer this blog post out early in December as a way to share how we prepare our mindset for the upcoming holiday time.

As a child the holidays were filled with just wonderful, busy but not too busy.  When I think of them, I can almost hear the laughter of my family and feel the cozy warmth of love.  Yes, the holidays were that and more.  Maybe it felt calm as I was in the role of a child or maybe that is how they felt “back then” In any case, the holidays of before are quite different than the holidays of today for us.

Early in our marriage, think before children, we planned whatever we wanted to do for those fun weeks before Christmas and for the actual day itself.  When we had our first child, Emily,  we had to plan our schedule around naptimes and bedtimes, always being sure to pack the right snacks and entertainment to make sure Emily enjoyed her day.  What then seemed busier with a child was really quite doable and fun.   The holidays continued in this manner for a couple years until Elizabeth was born….it was then we learned that our holidays,our ways that had worked for us for so long was in no way going to be what worked for our second child.

I can remember our first Christmas with Elizabeth.  She was almost six months old.  So for those who have read my book know that at this time we really had no idea of what she had but we knew something was wrong.  The crying and clinging were a constant in our days but both seemed to increase during the holidays.  Most times babies and young children can get quite a kick out of seeing family members, having them over to play and visit.  Emily did that is for sure, but Elizabeth did not, she couldn’t, her system just couldn’t.  So it was at this first Christmas, that we began to get schooled in how we were going to have to  manipulate the holidays to fit Elizabeth’s needs.  We had to learn to do this while still giving Emily all the fun she wanted, while smiling on the outside and having our hearts crushing on the inside.

Once Elizabeth was diagnosed with Sensory Processing Disorder or SPD, we quickly learned how our thinking needed to change.  We learned early on that what we WANTED to do each holiday and what COULD do were two different things.  No longer could we simply say “yes” to an event, or a party get together or if we had it then, zoom video calls.  We had to think of the sights, sounds and smells that would assault Elizabeth’s system.

Having now successfully navigated near to 23 Christmas seasons,  I wanted to take a moment to offer out some of the things we think about as we enter this season:

JUST BECAUSE “THEY” SAY YOU NEED TO DO IT, DOES NOT MEAN YOU HAVE TO: I wanted to start here because for some reason, someone or a group of someone has become the “they” that we all reference when speaking of the holiday. “They are doing this” or “They say this year everyone is….”  It is this group of “they” who deem the holidays be filled with parties, shopping and BUSY!  But truthfully, it does not have to be this way…Pick what YOU want to do, are allowed to do and what YOU hope to accomplish for your family and allow yourself to be okay with it.   If you make it to one video call and your family and child has fun, then consider that a success.  No one said all things need to be done to make a Merry Christmas…Be true to yourself and your wishes …no matter what and especially this year.

SOME OF THE BEST PRESENTS ARE THE ONES YOU CANNOT WRAP: I watch so many commercials that say “Get this as the perfect gift”  “Make you children happy with this toy” or “Don’t forget to give that special person …” and trust me I have done my fair share of finding the PERFECT presents over the years.  But having a child like Elizabeth, with such definite special needs, one learns that the gift of her smile, a happy day together with family, a special memory made with her siblings or even a new achievement done that day, like handling the noise and intensity of something deemed important, can be a present better than anyone that could fit under a tree. 2020 has taught us nothing if not to treasure time and those you love!  The gift of happiness and good memories, for me, beats any gift.

TAKE A MOMENT TO EXPLAIN WHY YOU CANNOT DO SOMETHING: Talking about you child, their needs to others and your family will bring you peace.  I say this as my opinion, but having hid our needs for so long before and having tried to make it all work.  I find it so freeing to simply say ” We can’t thank you so much and here is why”   Perhaps attending in a limited capacity or at a time that works best for your child might work but without being honest you will never know if it is an option.

CHRISTMAS IS A DAY…TRULY …JUST A 24 HOUR PERIOD: I offer this out for you as well as for me, to help keep things in perspective.  It is a day…ONE SINGLE DAY… a day made bigger by the media and merchants but in truth simply a day.   For me a day to rejoice in the true meaning of Christmas…the infant in the manger…star…the promise…. I am not waxing religious here just saying that to celebrate the day your way, to be okay with what you CAN do…to make the memories your way….well perhaps like Linus says “That Charlie Brown is the true meaning of Christmas”

I wish you a peaceful week and please wear a mask! We need to do this together!

The Latest

I know it has been such a long time since I have posted.  I want to say life stepped in but it is more than that.

There are times that I am working so hard on something new for Elizabeth that I want to have it be a success for her before I share it with you.  Then life steps in and I don’t share or post.  Then there is something new….and you get the point.

But, I am going to change that philosophy and simply share.

I had done that before, sharing the good the bad and the day to day.  I think as she entered the college program the challenges that she has risen to are wonderful but they have taken work on all of our parts.

They have actually at times taken A LOT of work.

So suffice it to say that she, like us all, are works in progress.  And I want to continue to share these with you.

In a true fashion because maybe what we are doing now will be the thing others want/need to know about.  And that reason is one of the four I have for doing my books, lectures and blogs.

The other reasons are to honor all of Elizabeth’s hard work in life, to raise awareness for her disorders and to let parents/caregivers know that they can make a difference in their child’s life.

So on we go.

Talk to you very soon

Michele