Archives for posts with tag: Special Needs

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

It is here!

The countdown is on its last few days.

Until….

SUMMER!!!!

It is a time for a change of schedule. Time for a break from the demands of school, work, in-person versus on line, stress and more.

Because after this long year it is a welcome time, almost more so than years before.

With the world opening up more and more there are options for our children that they did not have last year. And we would have to stretch our brains to remember just what summer looked like before the pandemic hit. I know I have to take a pause and think Oh, yeah! We DID have a membership to the pool that year! or Hey, I remember, Elizabeth loved going to volunteer that last summer.

So as we look forward to June, July and August I wanted to share with you some lessons we learned about summer on our journey with our daughter Elizabeth. For those who don’t know, Elizabeth has special needs. She has sensory processing disorder(SPD) and global dyspraxia. Both of her disorders have made life hard work for her each day.

She is soon to be 24 years old so we have a lot of summers in the rear view mirror and a lot of experiences to share

So here we go:

Summer is a time to relax but also work on skills

Summer is a time full of, well, time. So maybe now is a great time to find that one skill that you have been wanting to work on during the year but simply could not do it then. For us, one summer we worked on buttons, zippers and snaps. We did it daily and made it one thing we tried to accomplish. So maybe find that one skill or something you want to do and use this time to work on it.

Summer is a time to lose a schedule

Nothing says summer like time off. Ask my son if you don’t believe me. So saying goodbye to the schedule for him is an easy choice. But for our children with special needs, losing the schedule can create stress and can take them time to adjust whatever their new schedule is. So helping them adjust is really critical.

Summer is a time to keep a schedule

On the flip side of the above is the fact that our children need a schedule, something to give their days shape. Everyone knows their child’s needs for a schedule best but for us, a daily schedule helped and helps Elizabeth know what the day holds and helps her stay organized. When she was younger, the schedule helped her transition better as well. So I guess it is goodbye to one schedule and hello the the summer version.

Summer is a time to put away the school notebook

We used to make a big production out of the “cleaning out of the backpack” It was done on the afternoon of the last day of school. We tossed old stuff out, flung the backpacks into the basement and welcomed summer. It was a ceremony of sorts but my kids also knew that their bridge workbooks were waiting for them to work on.

Summer is a time to take notes

I know I like to think I can remember details well, but I must say I write down a lot of notes to help me. So I say, no matter how much you think you will remember about all the things your special needs child has done this summer, I have to say, you probably won’t remember it all. So now is the time to get a fresh notebook out and once a week or so, write down all the successes or struggles your child has. Write down what they learned, skills they worked on, how they handled a challenge. This will help you as you approach your child’s new educator in the fall.

Summer is a time to do a lot of things

Summer is a time to know “more is not always better”

I learned this early on in life with Elizabeth when she kept melting down in the afternoon. I would try to distract her with an activity or time outside playing but it was our beautiful therapist, Mary, who told me those words and that Elizabeth needed time to decompress not something else to do, even playing. It is important to know your child and their needs but the above is what I learned that carries me to this day.

Summer is a time to enjoy…the way your child needs to

I put this in because sometimes Elizabeth needed time home even on a sunny day where others were at the pool. And I learned it was OK. Knowing your child’s needs means allowing them to be who they are and helping them be their best.

Summer is a time to cherish all the good things….even the little ones!

Celebrate the good things. Celebrate the little things. Celebrate the things that maybe others wouldn’t because they are important to your child. We have celebrated the tiniest of things and have lived off those successes for a long time.

It all matter for our children.

I hope you enjoy it all. from the start of your first day on.

I wish everyone a peaceful week.

Michele Gianetti author of I Believe In You a Mother and Daughter’s Special Journey

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