Archives for the month of: December, 2021

I THOUGHT the appointment I had the other day was going to be a short wait to be seen. So I had mentally prepared for that. Turns out, the wait was A LOT longer than I had prepared for. I could feel myself getting a bit antsy. I had planned things after the appointment that I was now getting real close to having to cancel or at the least move around

I had to adjust my expectation with my reality.

I had plans with my friend for lunch. She was going to come over at 12:30 and I was going to pick up lunch. I planned my day around this and had mentally scheduled my work time and all the other things I needed to do for before picking up lunch. Then she texted at 8:00 am and said she didn’t feel well.

Again, I adjusted my schedule.

We all do this right? We have something planned that gets moved. Expectations that are different than what we really have. Or events that you think will go one way and they go another.

It is all an adjustment to this thing called life. We don’t always like it but we can do it.

I have to say for me, having certain shared expectations helps me because I can plan better and help Elizabeth with her schedule as well.

Something I learned by, well, life with Elizabeth is that a schedule/planner helps her so much as she plans her week/events/work/time with friends.

It helps because she can see the days of the week as well as the times that say her art lesson is… We can then set an alarm for a few minutes before the lesson for her transition time.

It works for us.

Something I learned in an article I just read and that might be helpful as the holidays approach is the need to talk to your special needs child about your expectation for them during an event. By expectation, I don’t mean being polite or say not hitting their younger sibling or playing catch with a dinner role. What I mean is communicating to your child in the way the best understand what they need to do for the event. How long they need to participate before they can go to a quiet place or what needs to happen before they can watch a show or that they need to sit through say dinner and can be excused at dessert time.

The goal is to let them know what will happen in the event/get together—–They will know what to expect.

The goal is to let them know the concrete things they need to do and can see or be told when those things have happened and they can have time to themselves.

The goal is to make the event manageable as there will not be surprises to adjust for.

They have a plan.

You have a plan.

And if they feel they are struggling, they know that they do not have to try to stay past a certain, prearranged point.

I have to tell you I did this with Elizabeth, who by her very nature, just loves a party but can be singing to the heavens that she is so happy that everyone is coming and on and on UNTIL the party starts and her SPD (Sensory Processing Disorder) will allow anxiety to come in and she gets to an overload quickly. So when we had something special for Michael, we talked it through in specifics and what was expected and when she was “free to go”

And it worked so well.

I offer this out because the holidays can be challenging in and of themselves and any tools we can use to help us help our children are priceless and any tools we have that can help our children ENJOY the event is priceless as well.

So hard to believe we are at about one week and counting!

I hope everyone has a lot of good memory making time together.

I wish everyone a peaceful week. Please wear a mask and get vaccinated/boosted!

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

Dear Santa,

As a young girl I wrote to you with requests for toys, games and of course, surprises!  I also want you to know I NEVER forgot to leave cookies for you and carrots for Rudolph.  Those times, even though they had their struggles (I did have brothers after all), were full of the hope and joy for the future. Time has passed, hasn’t it Santa?

And now we are in the future that we once saw so far away.

I write now as an adult, and a mom.  My joy and hope for the future, once felt as a young girl, came true in my children and husband.  I am blessed Santa.  So much more than I even thought possible. I have three amazing children, who are loved more than words can say.   

I say this all because, as we all look back over our shoulders to see where we were last Christmas, we can all see the many changes our lives have taken.  We can see how our world has changed, the positives and the negatives. This pandemic has not let up but has brought us gifts as well.

The struggles and the time when things were going just as we wanted them to go.  Santa, life does not stay the same and we all change and grow.

I can say our year had many wonderful memories of time spent together, laughter, tears, hugs and love as well as some tough situations, decisions and many emotions. But through it all, Santa, we grew and learned more about ourselves.

Our beautiful Elizabeth grew this year, she tried new things this year.  Some of them she loved and some not quite so much.  But the thing is, she tried them! And for her and us, that is a really big thing.  Elizabeth is constantly growing and learning and loving life.

She has this gift, Santa, of being able to enjoy wherever she is, to have fun and to see the good in all people.  She is one of those people who seem to simply step over the dramas of life that others find themselves deeply in. It would sure be wonderful if we all could have this perspective in our days.  Just think of how much calmer our hearts would be if this were true.

Santa, when you have a special child like Elizabeth, you pray the hearts of others will be kind.  So that their actions or words that follow will be kind as well.  I would love to ask that if in some way this could be the case, I know that myself and the other moms and dads of these special children could feel so much more at ease if this were true.  It is hard sometimes, Santa, to go into the world with this beautiful child and hope that others will see past their disorders, their stumbling speech or their unique ways to see and enjoy the beautiful child that is right there. 

Our world today is so fast moving, Santa, with things being done in one second that used to take hours.  Things are due yesterday and computers keep getting faster.  But one thing that scares me about that is that Elizabeth and other children who share her disorder function best in at a slower, calmer pace.  I ask myself how she will keep up in this world?  How will we get the world to slow down enough for her to be part of it all?

I would ask that somehow, someway, there will be a special friend, mentor, or leader, who would reach out their hand to her and other special children to kind of help them when they need that support or when the world is just a bit too much for them. 

I would ask for these special people for each special child.  Someone to be their genuine friend.

So many things go on in my mind about Elizabeth, Santa, sometimes the thoughts keep me awake, sometimes they make me cry but I pray a lot, everyday in fact, and I know that God is with us all. In the good times, the tough times and the times when we simply need to hold onto the fact that he works all things for our good.  But sometimes, Santa, I just would love to peek into the future, if I was allowed, to just know that she will be okay.  I know this is quite the request and probably the same request that all moms of special needs children feel…actually probably all moms regardless.  But it would be my special request anyway.  To know that she will be happy, safe and still be loving life at any age.

Santa, know that my special child has taught us and continues to teach us, each and everyday so very much about life and love and joy and appreciation of all the little things in life.  She is a gift, Santa.  One I never anticipated having and one I would not exchange.  She is simply love.

Well, I guess I better go now Santa.  You have so much to do and I thank you for taking the time to read my thoughts.  There is joy Santa, in the midst of everything. 

Merry Christmas to you…see you next year.

Your old friend,

Michele. 

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