So happy news!

Elizabeth had her first training day for her new job. For those who don’t know, Elizabeth has started the process to work in the dietary department of a nursing home. She is excited because she loves to cook, prepare and work with people. And she loves working with the elderlies. That is her word and truth is, she does.

So we began the process of calling, interviewing, doing the on boarding paperwork and testing. And may I say it was actually a lot of work to do this. Oh, and it included getting fingerprints.

Elizabeth was with me on the majority of the above steps and it was only the financial on boarding that I chose to do alone as it was something that only one person really needed to do, it was easier for me and also, I was working off the app on my phone, so there was that too!

I will say that I made sure to tell Elizabeth everything that I did as that is how I try to remember to do now for everything.

I am very happy to say that the young lady who runs the dietary program and the gentleman who runs the nutrition program at the facility want to help Elizabeth by asking questions, listening and working to help her succeed. I learned from them that there is ALOT to learn, menus, items, steps, measurements, records etc…

For those who don’t already know, Elizabeth is my daughter who has special needs. She has global dyspraxia and Sensory Processing Disorder (SPD) Both of her disorders affect her life each and every day. Sometimes more than others and sometimes it is the sensory issues that drive her anxiety and struggles and other times it is the Dyspraxia that will do it.

I have to say that if someone had told me many years ago that the advocacy that I tried to hard to do correctly would be the same thing I am would be doing some 20+ years later, I truly would not have believed it. But our journey continues. Always differently but continuing nonetheless.

I learned how to become a strong advocate for Elizabeth. I did not always know how to be an advocate. At the beginning of this journey, I was a bit too polite and soft spoken about Elizabeth and her needs. I tended to listen without question to the words of the school, be it preschool or primary school.

But then I learned

I learned to be her voice and talk when she couldn’t

I learned to be her champion when she wasn’t able to tell people what she wanted, needed or what was bothering her.

Then as she worked hard in therapies and life, I learned how to better represent her. How to tell those working with her all the things she can do, the things she is working on and the things she needs.

Then I learned how to advocate for a young adult in planning her life after high school. To allow HER choices and interests to be the ones we focused on. To help her find the right places and people to talk to.

So I have learned a great, great deal in helping Elizabeth by helping those who are working with her to understand just how she works.

To be honest, her disorders are ones that require information to best work with her.

Therefore, I am forever and always grateful to those who have the interest and take the time to listen and then work with me(us) to help Elizabeth grow and be the best that she can be.

So now back to our nursing home update:

After her first training session, the young lady who runs the dietary program tells me she needs to talk to me about the first day. As I wait for her to call, I almost feel like I am back in time to waiting for and IEP meeting or a report or “an issue” to be talked about.

Then the call came

And we talked about the good things she had done, the things Elizabeth needs to learn and that she is ready to plan another 4 hour session for this week. We even talked about a job coach coming to help her learn the steps and talk them through later

I loved out talk and that she listened.

I share this because we know we are trying our best for our children with special needs children and to do this our advocacy is critical.

Sometimes it just helps to know that we may be in this role longer than we thought and each time it may feel like starting over.

But you and I are better at it than we were the time before.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

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,