Archives for category: Therapy

So to sort of dove tail on last week’s blog, I wanted to share how we went about making the plans for Elizabeth’s summer.

Elizabeth is going to soon be 24 years old and for those who don’t know, she has special needs. She has SPD (Sensory Processing Disorder) and global dyspraxia. Both disorders can make life hard work. Some days are better than others and some days are simply the kind when I wish it was time to go to bed and start again tomorrow and I look at the clock and see it is 9:30 am! So as I was saying to my one dear friend, Elizabeth’s disorders can show themselves greatly or sometimes practically not at all. So when they do, I go back to my tools for helping her navigate them.

That is why planning out schedules requires us both to keep several things in mind. We need to always run the schedule through the filter of More is not always better

That is one of the things I talked about last week and it is one of the biggest tools I use.

So when Elizabeth and I talked about her goals for summer and what things were available, we both agreed that she is busy each day but that there is built in down time for each day. We have learned early on in her life that her nervous system requires time to “relax” I know a nervous system doesn’t actually do that, but because hers is working hard all the time to navigate life and adjust for changes that our systems do automatically, she is fatigued when her work/activity/job is done. So she needs a break.

A break of her choosing. And this is the other thing we talk about. She lets me know when she is taking her break. For example on Monday she is helping to teach gym classses to preschool children until 11:30 am. She told me “I will come home, eat lunch and relax a bit.” and yes, she says relax a bit. It is cute and I am not sure where she picked that up from. She also works at a local catering place in town, so that goes into the morning schedule 3 days a week too.

But then we talked about keeping her goals from before that included typing, reading and cooking. So we tucked those into the afternoons post break as they are low stress and sort of relaxing in their own right.

She loves to exercise, so that goes in the spot for after dinner and the days we walk our 5 miles gets put into the schedule as well.

It is a carefully crafted schedule and one that she worked with me on planning.

This is definitely a schedule that will be much fuller than we have had in a long time, so we may have to adjust if it is more that she actually desires. But that will be determined after it gets underway.

So the advice I gave on the previous blog was the same advice I follow to this day.

It starts with understanding your child and their needs and putting into their day the supports they need at the current time.

I hope everyone is enjoying their start to summer and good luck as you plan yours.

I wish everyone a peaceful week.

Michele Gianetti author of I Believe in You: A Mother and Daughter’s Special Journey

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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