Every year during the holidays, we say “Next year, I am NOT going to be this overwhelmed!” or maybe ” I will do things so differently next year”

And what typically happens is that we forget those statements and go right into the holidays and maybe even say them again about next year.

The holidays are truly such fun times. They lighten your heart, give hope and make the chance to make memories with those you love.

But they can make us feel so stressed to from the typical situations like shopping and wrapping and cooking and baking….

And for those who have special needs in their world, there are so many, many more stressors. I think that we carry the feelings of trying to make the holidays good for all and we know that our children with special needs may see all these “fun” things are pretty big challenges.

Maybe the lights that look so good to others are too bright for them or maybe the holiday musical is too crowded or loud

Or the family gathering? Maybe the food isn’t one they like or will eat. Maybe it is too long to sit.

And don’t forget the change in schedules, which our kids typically love so much.

There are more things for sure but the whole thought in sharing this is that the pressure to make a good holiday can really grow too great as we have pressure to make sure our children with special needs are ok with it all. Not really just Ok, but the best they can be.

So for me they phrase, THE PERFECT HOLIDAY, is one that doesn’t exist.

Perfect doesn’t exist for anything, really and for the holidays, that holds true even more so.

I chose to say that what we do, with the best of intentions and a heart full of love, no matter how it all ends up will be the memories we have that year.

Will they be just what we hoped for? Maybe. but maybe not. But that will be okay because you/we will have tried our best.

I offer out to all, after some 25 years of life with my beautiful Elizabeth who has special needs, to simply enjoy your holiday in the way that works the best for you.

With Elizabeth’s disorders of global dyspraxia and Sensory Processing disorder (SPD) we have learned just how much they affect her life each and every typical day. and holidays add so much extra thought and care.

To know you that, as always, you are doing your best for all those you love.

And again, that PERFECT DOESN’T EXIST

Just enjoy the good, the successes and the fun in whatever way works for you and yours.

And while Hallmark and Lifetime may show those perfectly decorated houses, brimming with smiling, happy guests (who, by the way, are always dressed in amazing holiday wear) the reality is that, we have learned to set aside expectations that the world may think of as “The perfect holiday” and simply enjoy any and all time together and any and all good things the holiday time may bring.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.

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