Archives for the month of: June, 2022

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

I think that one thing is for sure and that is that we are all on this wild roller coaster of life. Things are changing minute to minute and so many things are such that your find your jaw dropping as you try to understand yet another thing that is going on in this world.

For those who have special needs in their life, we are all on a different kind of roller coaster. Some days are amazing with our child with special need while other days are so just not.

They work hard in life.

We work hard for them to achieve the best they are able in their lives.

While those two things are not the issue, it is the emotions that go with our lives that is our unique roller coaster, our wild ride.

I can tell you flat out that this Monday was NOT. Repeat NOT the banner morning for Elizabeth. She woke up and was to start her Gymster’s job for the summer session. Then she was headed to the YMCA to work out with her employer of Gymster’s, aka our dear friend Liz.

The job was not new, but the place was as it is summer…..creating anxiety

The YMCA was not new, but she had not been there in a long time due to COVID…..creating nervousness at the unknown

She went to bed organized, happy and looking forward to her day.

She woke up so very disorganized, nervous, upset and short tempered.

My emotions went from high and positive, to confused and full of questions to help her, to upset that she was not ok, to frustrated that nothing I said helped to angry that she was going out of her way to show her frustration to me.

UP

Down

Up

Down

Around

Loop the Loop

This is something that, unless you are on a special needs journey, you truly cannot understand.

I have a friend whose daughter is an amazing young lady with special needs. My friend was on the phone with me yesterday and sounded so defeated as she told me a bit about her daughter’s “really tough” day and how hard it all can be. My friend was also the same one who, about a month or so ago, was as elated as a mom could be, about her daughter’s grade in a college program class she was taking.

Up

Down

Up

Down.

We choose to take the good and cherish it. Be it big or small. No question there as this helps to nourish our reserves for when the “down” comes. But the roller coaster of emotions is tough.

I am writing this to just be honest and a support to someone who may be wondering if what they feel is normal and ok.

It is.

It doesn’t mean you will change anything in how you work, support, live with and love your child, but sometimes it helps to know you are not alone in how you feel or even alone in the seat of the roller coaster.

Going back to Elizabeth. At the age of 24, she took a pill this week. All of you will understand how excited and happy we were. Sensory issues make it hard for her but she tried and did it.

UP again we go!

I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You

%d bloggers like this: