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I looked in the cabinet in the kitchen that has my pots and pans in it and asked myself why the baking sheets were casually resting on top of them? Surprise!

Or

I was headed into the pantry to get some of my chips( I eat a very specific diet due to an autoimmune issue), chips that everyone in the house hates except for Elizabeth. So I find the bag of chips virtually empty, the opening folded over but the chip clip not really clipping anything of importance, so the one last chip and its friends the crumbs were stale. Surprise!

Oh there’s more…

The coat she wore outside was hung in such a fashion that when anyone walked into the mudroom, they would have NO trouble guessing which coat it was as it sticking out by itself, yet actually its hanger was on the rack. Surprise!

I am consistently surprised how Elizabeth’s issues show themselves in the things that she does. But I must say I love how she bends the world to meet her.

With her special needs of Global Dyspraxia and Sensory Processing Disorder ( SPD) all of her life skills have had to be taught to her.

Step by step

Broken down

And repeated.

For everything she has learned.

So when I think about it I am really in awe of her.

I did learn that she needs to learn skills and steps right the FIRST time. Because as I was taught and learned about Dyspraxia, habits are made easily but are terribly hard to break. So getting things right the first time is really essential.

So I do stand in awe of her and how she has learned all these things in life. With that being said, one of the things that I have noticed as she has gotten older is that some of the more complex things in life are still quite hard work for her.

Really they are things of judgement and decision making…such as how to respond to a complex text message. For her, she reads it, knows action is needed but then due to dyspraxia and its effect on ideation(thinking of what to do) and initiation( thinking of how to do it) she may get overwhelmed and simply do nothing. So we are working on this area.

Or when she is in a conversation and the first few questions she asks are easy but based on the answer from the other person, she needs to figure out what to ask next or what to say. So we are working on that area as well. I spoke about new goals for her in a recent blog post and one of them is to “be better at asking questions and talking”

The thing about everything I wrote just now about Elizabeth is that this is my journey. But everyone has their own day to day issues or events related to their child’s journey. And what may seem stressful to me may seem overwhelming to others and not so much to even others. We are all on our own path and something I have learned, is to try not to compare my journey with my daughter and others.

I have read so many posts on special needs social media sites. And as I read one about a child talking too much or staying in their room reading too long. I have to stop myself from acknowledging just how much I want those words to flow clearly from Elizabeth or how much I want reading to be a big enjoyment for her instead of being work.

I have to stop myself because I don’t know their lives and journeys or what their normal days are or what their struggles are. Those posts are mere snapshots, only those living on the journey can know.

I think we as parents/caregivers for these beautiful people with special needs need to be able to give credit to ourselves for knowing our children, their needs, wants and struggles the best we can. And be able to advocate for them, being their voice when they don’t have one. Sometimes we need to know that as we manage a day, the good, the bad, the middle, that we do it from a place of love and understanding of our child and their journey.

So I will fix the pans and gently remind her where they go. I will do the same teaching and learning for the chips an coat.

But I will be grateful to know and understand why I will never stop being surprised because I understand why….

I wish everyone a peaceful week and please keep wearing a mask

Michele Gianetti author of I Believe In You

I know that once we had our daughter Elizabeth that life was never going to be the same. I mean that is true of all children who come into your life as each person changes the dynamic and family just by arriving.

But with Elizabeth it was different.

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