I know that I have often talked about the gift of Elizabeth, (my daughter who has special needs. Specifically, she has Sensory Processing Disorder(SPD) and global dyspraxia.)

From the way she stops us midway as we are walking down the hallway upstairs to make sure we see the sunset and how “its all purple and pink” and she looks so peaceful watching it.

to the gift of

The times that she will tell you the color of your heart, based on how she senses you feel. (red is angry, pink is happy, blue is so-so and black is the worst)

to the gift of

The appreciation we have for all the little successes she or anyone accomplishes in life.

These are just a few of the too-many-to-tell-you gifts of Elizabeth.

It is not just me and my husband who have benefited from these gifts, Elizabeth’s siblings have as well. You can see it in their kind hearts. The way that they understand her and are patient with her. The way that they are kind and understanding of others to a degree not typically seen in young adults/adults their age. I remember my son, Michael, at the age of 11 or 12 making sure that everyday after school he would “high five” a student he knew who had special needs.

Every.

Day.

I love his heart.

And my daughter, Emily, who is now a full fledged adult has ALWAYS had a certain ability to understand and be understood by her sister, Elizabeth. She was as we used to call her “the Elizabeth whisperer”

All the time that Emily spent with her sister gave her perspective and well?. LIFE with a special needs sibling. I remember telling Emily that all that Elizabeth has taught her during her life would give her gifts that will help her be the best physician possible. I mean who better than a physician who LIVED life with special needs in it to help families who are on their special needs journeys? Be this a young child, young adult or the families of the former.

We sometimes worry so much about the siblings of these beautiful special needs children we are raising, that maybe we do not think of the gifts they receive from having them in their lives. I like to think that the gifts of their siblings are what can stay with them to help them in their lives.

Let me share this story about just such a gift that Emily shared.

Emily was on an overnight call for her residency last week and got a call from a nurse on a patient who would not get dressed or stay in their bed. The patient was a man with Down’s Syndrome. And as I was told by Emily, no matter what the nurses said, this man would NOT listen. He would not dress. PERIOD. They had called her so she would handle this and maybe prescribe something to help with his anxiety over this situation.

So Emily told me that she went into his room and had a nice talk with this man. She told him that it is okay if he doesn’t want to dress. She told him it really wasn’t a problem but that the getting out of bed WAS an issue in case he fell and hurt his already hurt leg. I think because Emily was taking the time to talk to this man, he told her how his emotions were about the whole scene.

She listened….the gift of Elizabeth.

She then told him that he needed to promise her that he would not get out of bed that night. That he didn’t have to dress but that he needed to promise to stay in bed. She said she PINKY PROMISED with him to do this.

So picture this scene. Doctor and patient pinky promising and see the gift of Elizabeth and the gift of my Emily….

This man then stayed in bed all night. And had no more issues.

He was heard because Emily knew this from life with her sister.

My daughter shared the gift of her sister and we are so proud of her!

Trust me on this one, when the days with our special needs children are long or tough, we may not see the gifts, but they are there.

Let my story help us all remember.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

Ok, Where to start?

Suffice it to say that sometimes this step backwards comes at you but you can see it on the horizon. So you get ready.

You see a change in mood, or activity or a bit more or less of behaviors in your child that you don’t typically see.

It is like when there is a hurricane warning for those in the South, you get ready with sandbags or shutter your windows because you know it is coming.

That is when you have warning.

Then there are other times, when you don’t get to look to the horizon to see the stirrings of a problem. Kind of like in prairie times when there was a blizzard that just HIT! WHAM, wind, snow and cold.

These are the ways, in my opinion, that these steps backwards arrive.

With that being said and well explained (insert smile face here!) Here is our story:

Our most recent “Two steps back” came like the blizzard example.

One night, our beautiful Elizabeth went to bed. Content and happy…..

However, the Elizabeth that emerged in the morning, while looking just like the Elizabeth who went to bed, in no other way resembled her.

She was irritated and short fused. Challenged by the simplest of commands. For example, in no way should ” How about you throw your laundry in this morning?” illicit the irritated, icy response we got.

Now I fully get that this does not seem like the two steps back has even occured right? But see, this is where it all ties in. Due to the way Elizabeth is wired neurologically, with her Dyspraxia and SPD (Sensory Processing Disorder) sometimes it is OUR reaction to the above mood that can start her system to react more.

It reacts by becoming disorganized due to stress ( some from her, some from us)

Then she doesn’t initiate tasks well -which makes us ask her, which makes her anxious

Then when she does try to do somethings, she cannot complete them well

Then she doesn’t really want to try as she isn’t feeling successful.

So we do some things for her that we know she can do and she happily lets us

And we repeat.

And repeat.

There is the “2 steps backwards.”

Now here is the kick. When she is feeling this irritation, she really doesn’t want to talk at least not at first. So we can only sooth her, not really help her work through the emotions that originally led to the irritation.

Trust me, with COVID and the stressors of life, we probably all want to unleash some raw emotions but we probably find more appropriate outlets. Such as talking, exercising, prayers etc.

Which are all things Elizabeth has in her tool box. But she didn’t go into her tool box this weekend.

So now it is Wednesday at night

4 days from Sunday when the metamorphosis happened and she is visually getting more organized. She talked to me several times yesterday and today.

So we can see this swirl of emotions is abating and like all things in life, there is a gift to this. Sometimes you have to look really, really hard for it. But it is there.

For me, the gift is learning that natural consequences have to be allowed to happen more, when these 2 steps backwards occur. Not huge ones, just ones that allow her to see the importance of her maintaining a certain level of tasks. Such as if you ignore your alarm in the morning, perhaps you will not have time for any breakfast other than a quick protein bar going out the door. Instead of me, waking her 2 times and hearing that she “just didn’t feel like listening to her alarm”

In any event, this all happened this week and I share this because I know I am not alone. And yet, for those who wonder if this happens later in the years with your child, take comfort it does. But as always, we are still learning and growing with Elizabeth.

All the work is worth it but it has been a week for sure.

I wish everyone a peaceful week ( I am directing that to us as well!)

Michele Gianetti author of I Believe In You