Thankful For What Is

For those of you who know anything about Elizabeth, you know that she loves to have her favorite foods, that she is prone to food jags ( thank you to my mom for this inherited trait:) and she is hungry more than she is not.

So with that being said, Thursday this week, Elizabeth came home from a busy day like always.  She took her few minutes to relax and change, like always.  She told me she was hungry, like always.   Well since we had a long weekend off, courtesy of something our school likes to call “mid-winter break” I said “Hey, do you want to eat and watch T.V. as a treat?”  Well guess that answer to that one?

So I make her favorite dinner, spaghetti.  I bring it in with a nice salad, fruit and warm bread.  She thanks me, sits down, we say grace and I hug her and go to the other room.

I return in a while to see NOTHING touched.  NOTHING was eaten.  HMMMM, I thought What is going on?

Me: “Elizabeth are you sick? Does your stomach hurt?”

Her “No, I am fine.  Just not hungry tonight.”

Me “But you said you were hungry. Are you sure you are fine?”

Her ” I am NOT sick.”  Side bar here:  Elizabeth absolutely hates to be sick….I mean HATES to be sick.   So much so that once when she actually threw up in her room.  She told me ” Don’t worry about that, it is just a burp.”

So I was getting kind of concerned, then concerned turned to worry when she did not eat her snack later that evening.

I thought we should talk about this, so we did.

Turns out she was sad.

Sad about missing my dad who died almost three years ago.

Sad “that people go away”

Sad ” that things are so hard for me to do”

Sad “that Emily is not home tonight”   Emily is her beloved big-sister who moved away to medical school.

So we talked through ALOT of things.  She talked, I talked, she hugged me, I hugged her.

She looked a bit better.

The next day she woke up,  Looking a bit better, We talked more.

Elizabeth asked for breakfast…she ate it so quickly.  My heart was so very happy seeing her normal return.

We talked more that day and the next.  But I must say that until what you know and have are taken away, even for a day or so, you really aren’t as thankful for what is as we ought to be….I put myself on top of the list.

I am not sure the moral of this story, or what it means to you.  But to me, it is a reminder that what we have in our children are wonderful, beautiful people.  Made so uniquely, that when those things change in them, it is a bit unnerving.

I am thankful for what is…..

I wish you all a peaceful week.

Michele

 

Dear Santa,

Dear Santa, Again I have to say it is hard to believe it has been a whole year since I last wrote to you. I hope you are doing well and you are healthy. Our year has been one that has taken us to really happy places and through some very hard moments but you already know that, after all you are Santa.

I know you have read my letters the past two years and of course many many more when I was younger. Sometimes, I wish I were able to simply put down my list of toys like I used to, when I was little. But the things I am asking for are things you really cannot put in a box. I believe that Christmas is a magical time, with thoughts of magic in mind, I hope the things I am asking for could be possible.

When I think about what I want for this year, I think my heart wants peace. The kind of peace that comes from within and helps with handling all the things that come my way. Parents of special needs children can never really control what we will be facing each day, so this kind of peace is priceless. We have all faced days when we feel anything but peace. Please leave that for us Santa, I know you understand.

Something els that comes to mind, Santa, is how much I wish I could be in many places at the same time. I wish I knew how to always successfully be there for my special needs child, for all the members of my family, at the school and with Elizabeth at therapies at the same time. I want everyone to know how I wish I could be with them but I am just unable at the moment. I am not sure how you can handle this one, Santa, but it one wish that lays on my heart most days. I know that asking that is too much, but maybe you could help to remember to be present in the moment I am in, to focus on the now and leave thoughts of those other places for another time. Parents of special needs children can find themselves thinking and juggling so many schedules and thougths that being in one place both mentally and physically is a gift. I know you will know just what I mean, Santa.

When I think of this year, I can see the milestones that Elizabeth has achieved, the successes we have played a part in. I ask Santa, for all of us that we have a strong memory for these good things. That somehow we will all remember these good, happy moments. How quickly, we can find ourselves focusing on what went wrong or what we need to do, instead of calling up a good thought or success. I ask for all of us who have those special children, the memory of the good to shine just a bit brighter and stronger than the negatives. I know I asked this last year but I think this will always be on my list, if I am being truthful.

I ask for all of us parents to have the gift of words to speak for our child, when they cannot. To use these words to help others understand them. To use these words to teach others about them. This is hard for us, sometimes, Santa. I kmow this gift would be so helpful to us all.

I know there are two other things that most parents would put on their list and I am no different but they are patience and perspective. How many times am I in a stressful situation with Elizabeth in each day? In one with my two typical children? In one in “just life” How I ask for patience, Santa, patience to see it is just a moment in time. A fleeting situation. To But I ask Santa, for all of us parents of special children to have the clarity of thought to “live in the moment” to hug, love, cherish and be thankful for those we love so much, while they are hear with us to love, to hug or to look into their faces. So much of life is busy and sometimes that busyness obscures our view of just what is important right now.

I hope you like the cookies we left for you, Elizabeth helped to make them, She is continually learning and growing. We have all grown with her on this journey. We have all learned alot and I know that because of Elizabeth, her siblings have two of the most understanding and loving hearts. I ask Santa, that those working with our children in the schools be given the gift of empathy, and belief in our children. We know they can learn and succeed and we know how they learn. I ask that those working with our children have this presents…each and everyday…our children need them to!

I know I have asked for so much Santa.

Thank you Santa, for reading my letter, I know you will do your best.

Happy Halloween

So many times, there are things or events in the year, that make sensory issues come to the forefront.  Halloween is one of those times.
The sights of people in costumes, with masks on or face paint.  And do not even get me started on the gory ones.—our children have enough difficulty navigating traditional interactions with people. Let alone trying to take in all this strangeness

The sounds of creepy music or soundtracks of screaming people—if the sound of a door slamming can send some of our children over the edge, how can this music or soundtracks not affect them even greater.

The darkness—yep, the actual trick or treat time.  I, myself, would have love to see trick or treat be on a Saturday afternoon.  Nice and bright and safe.  But, I am so in the minority here.  So darkness is something our children will have to content with.

The sensations–THE COSTUME.  Made out of material that may not be one they typically wear.  It can cause all sorts of feelings in them.

Yes, Halloween, can be a big sensory experience for sure.

Here are some thoughts for those with these wonderful special children.

-UNDERSTAND YOUR CHILD-  Some children do not mind the costume at all but hate the sounds, some the other way around.  Understanding your child is the first and key step to helping them navigate this holiday successfully and have fun.

-BEING FLEXIBLE-  Sure, I really wanted Elizabeth to wear the costume we had planned, but on that night, she refused to wear it.  So after many tries ( probably not a good thing) we went with a nice cotton shirt with a pumpkin on it.  I have learned that being flexible is crucial to life with a child with sensory issues.

TALK-  I found telling Elizabeth what we were planning on for that night and what she could expect was so helpful…kind of a halloween social story,  We also reviewed what we wanted her to do as well.  It does help.

ADVOCATE- Probably not what you thought would appear here, but by this I mean.  If someone asks why then cannot talk. Tell them.  If someone asks why they look scared, share why.   It simply makes it easier and better for all.

My hope is that your Halloween will be fun, safe and a memory made.  Elizabeth is 19 years old and with that being said, she has racked up some great ones over the years.

Blessings to all.

Michele