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I had someone tell me once during a big discussion of life that ” Truth be told, Michele, time goes at the same pace it always did” He meant it goes no faster or slower but I disagree. I understand that time ticks away at the same pace but there are times in your life or moments in your life that make it feel like time flies or crawls along.

The thing said to us all and really BY us all, is that “time really does pass fast” but for those who have children with special needs, it seems to pass so slowly at the same time because maybe we/they are working so hard or maybe it is just a really tough time.

Elizabeth is my middle child and she has special needs. She is 23 now. She was diagnosed at 2.5 years old with Sensory Processing Disorder (SPD) and dyspraxia. Her early years were really tough ones with her crying almost all day and the therapy appointments and on and on……

Those are the times I think felt like they were going so very slowly….Would she ever talk? Will she really walk well? Oh, Look! She said a word? Oh wow! She is trying to walk! It was bit by bit, moment by moment, effort by effort. I feel that is why it all felt in slow motion.

Life with Elizabeth and her needs changed the way time went. At least this is how I feel. It is like we are working so hard each moment, day, week and year for our special needs child that it is as if an imaginary calendar, is directly behind us just flipping off days as we continue to do all we want/need/must do for our special child and we don’t notice it all. Yet when we look up from our work, we do.

So when I look at pictures and see my children when they were little. It is such a tug at my heart when I see the little bob haircut on Emily, my oldest or the tiny bows in Elizabeth’s hair when she was little (and would allow them IN her hair) or when I see Michael, my youngest in these little shorts. Or when I see them in middle school on track or a swim team picture. Elizabeth for the former, Emily for the latter. And Michael on his first basketball team. How fast it went.

Or when I see the graduation pictures of Emily and Elizabeth. Fast again.

Or when I remember Emily went off to school for Kindergarten and Elizabeth and I were together headed to therapy after therapy…..Slow motion here.

Then Emily was suddenly in 5th grade and Elizabeth entered our school system (a bit late) to first grade.

Slow, then fast, then slow……Then Michael arrived and the clock started again. And it too, moved slowly and super fast as well.

I have often talked about the “Gift of Elizabeth” The ways that being in her life have taught us things. Such as slowing down to watch the sunset or dancing to a song is really important even if dinner is cooking, or to really appreciate and celebrate EACH AND EVERY success achieved in life. I am so grateful that because of her gifts, we were able to treasure the good things of life whether the time was moving slow or fast.

I hope all the moms or “moms in the life” of a child with special needs realizes deep in their hearts just how important they are, what gift THEY are. And just how much their love and devotion makes a difference in their child’s life. That is just something I really needed to say.

So with that I wish all the moms out there a Happy Mother’s Day. And weather you are in a place in life where time is moving slowly, I wish you strength or if you are in a place where time is moving fast, I hope you enjoy it all.

I write this blog in honor of my friend Barb Phillips, sorry Barb I had to put your name here. As I write this, she is at the hospital going on day 17 being the biggest champion and advocate for her daughter Lacie.

Lacie has faced the very real possibility of going to heaven these past 17 days and Barb has NOT once left her side. She speaks for Lacie, because Lacie doesn’t have a voice right now. Barb is a beautiful mom.

Lacie, in her 20’s now, was born with many many medical issues and Barb has NEVER, NOT ONCE waivered in her care for Lacie. Driven by, well…LOVE, Barb has seen her through situations, surgeries, and care throughout days and nights that would drop others to their knees. But the love keeps her going. She herself has some health issue but she doesn’t complain. She is truly what a mom is. Lacie is a gift to her but Barb, you are a gift to Lacie as well!

Barb wants Lacie’s life to matter.

Barb, by your fierce love and devotion, you have made sure it does.

Happy Mother’ Day to all

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.

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

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