So many times I read about and hear about parents with a special needs child and their experiences with people looking and commenting about their child.  Due to a lack of understanding and sometimes a missing compassion gene, comments get made, looks get sent and we as parents die a little bit inside.

We try to speak for our children, we try to teach others about our children, we try to be their advocate, we try to get the world to bend to their needs.  Yes, each and everyday we live and work with our children.

I know from my personal experience that Elizabeth is with me ALL DAY, EVERYDAY….meaning I know I think about how she is doing, has she made any gains, has their been a problem?  I would dare anyone to challenge a parent of a special needs child to deny the above…..

But here is something that I have not heard about ….the people who do NOT ask about your child. The ones who do NOT show a genuine concern for them. This is not something I have heard many people talk about.  I have heard so many say that their families don’t understand their child or offer advice that is ill suited to the situation but what about the times when  you are with people who should care about your child, should ask about them in a form or a question that delves deeper than “how are the children doing?”

I know that so many times, people are afraid to ask.  I wonder if they think we don’t want to talk about our child.  As I have stated before they are always with us so to ask is really okay with me.  I would love to tell you about her recent successes, her recent gains, moods, grades or plans.  But  you did not ask, your question was a bit to generic for me to take the chance of unveiling these wonderful parts of Elizabeth.  I guess I hesitate to really open up unless I am pretty sure the other party really wants to hear and hopefully will be as excited as we are about the fact that Elizabeth did this or that. But can I chance it????

Those who feel that others in their family or circle of friends do not understand their child, they may relate to my topic today in a way….It is a hard thing to get that sometimes people just don’t ask….they just cannot or do not show their concern, or care. ¬†There is no anger here in me as I write this just the all too real realization that some people are okay to offer a topical balm to calm what is to us a third degree burn.

Life with our special children is just that special…so to ask, to genuinely ask, is to us a gift, a chance to share what is our LIFE.  Please know that to ask in any other way than in a genuine way is just too much for us to decipher. Do we share? Don’t we share? and How much? and to simply not ask at all is just to us a sad denial of the very reason we fight, advocate, laugh, rejoice and cry.

My daughter is amazing, loving, caring and fun, worth every bit of effort we have made over the course of her life. Perhaps by not asking, I offer out that they are missing out on sharing the lives of these wonderful children we call ours.

I wish everyone a peaceful week,

Michele Gianetti author of Elizabeth Believes In Herself

Three guesses what the following items have in common:

Trailmix

paint

Salad

Rice

They are all items that have been “Dyspraxia’d” this week.

I use that term in an endearing and quite accurate way, if you ask me. Because I know that the only reason all four of those unique items are grouped together is because they are all things that had their fate affected by the disorders my beautiful Elizabeth has.

For those who don’t already know our story, Elizabeth is my 24 year old daughter who has special needs. She is an amazing, loving, smart young adult who has SPD (Sensory Processing Disorder) and Global Dyspraxia.

It is this second one that plays the bigger role in her life at this point, and in my observance. This disorder is a motor planning one, so that all tasks are challenging and for Elizabeth, ones she sometimes has to have broken down into steps to learn well. Sometimes she masters them easily and other times, she makes an incorrect habit while learning a new skill and this “habit” is so hard to undo, that that new skill will for a VERY long time be extra challenging.

Ex. Learning to use her new can opener. It is a manual one, and sort of has adaptive features to it. As we were learning how to put it on the can and engage it, she was able to use the correct grip, but to WORK the can opener and twist it properly, she needs (ed) to change her grip.
Which she did not do the initial few times as we were practicing.

So now, EVERYTIME we use this tool, she cycles through the incorrect grip to eventually get to the correct one.

That is an outward way that dyspraxia shows itself, there are so many more but we can leave it at that for now, but dyspraxia also affects in ways that are not shown and THIS is the toughest part. I mean I can see her hands struggling and remind her to switch a grip but I cannot know the days that she is feeling disorganized, anxious about how she will handle this new thing or even why one day she is flying around doing everything well and the next day she is staring at me waiting for me to help her initiate the first steps to do ANYTHING that day.

I think one thing that saves us, for anyone who needs this, is that we started talking/communicating about her day, life, feelings etc when she was young. Sometimes I did the most talking, as she got older and could talk better, it was her. but this communication helps me understand what is going on each day. Use a white board to draw a picture, write a question and give 3 answers for them to circle the one they want, draw faces to help them identify emotions…whatever helps them communicate their emotions and feelings.

Are we always just in perfect harmony, even though we talk. Absolutely not. It is tough! It all requires patience and some days that is a hard one to muster.

But I know we do our best and that, to all who are reading, is the goal and hope for each day.

The trailmix, once in its nice container, was found upside down in the sink. Dyspraxia makes it difficult to know where your body is in space and hence she misjudged and in went the trailmix. All those delicious pieces literally filled up the garbage disposal. Elizabeth filled the container up, set it on the counter and proceeded to knock the entire thing into the sink.

Who knew that our bathroom would become splatter paint artwork. It did because Elizabeth cleaned up her brushes from doing her artwork for her Etsy shop.

The salad, precut and ready to go, became a little salad trail in the kitchen from the fridge to the counter. How? I cannot explain this. I do think it has to do with her judging how to cut open the bag with scissors. Sometimes she is right on point and other times, she is aggressive….like this time.

And the rice was petrified in the microwave from where Elizabeth put a bag of it to cook but must have laid it down and a good bit fell out… Sometimes with Dyspraxia, she is just happy to do the task and doesn’t want to do more work since it is hard work, to do the skill in the first place.

She helped clean it all up and said the words you read in the title….quite a few times this week.

It was a big dyspraxia week this week.

I hope some of this made you smile and I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You

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