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As I talked about in a few previous blogs, we are changing the focus of our time and work for Elizabeth. Due to COVID and her not going to her college program for special needs, it was her words and thoughts that turned into the new plans. How great is that!

Elizabeth is my daughter with special needs, she has global dyspraxia and sensory processing disorder (SPD). She did not talk until 5 years old. So anytime those words flow, even now, we get so excited and proud. So her telling us all that she did about the goals SHE wants was simply wonderful.

As I said last week, I learned a few things about implementing her goals and so now we have adjusted a bit, still a work in progress, but it has been a better week than last. Truly it is a day to day sort of thing, isn’t it?

But as I was looking for something for her yesterday, I remembered it was in the basket of her “stuff” in my husband’s office. Now this basket contains different pens, grips, sensory stuff, a slant board for writing and more. Items we used in the not so distant past.

But here is the thing, even though we may have used those things not so far back, they seem to not fit what we are doing now. Which is interesting to me. It is like adaptive items seem to cycle in and out of what is currently used for us.

So now as I look at that basket, I will have to sort through it all and see what we can use now, with Elizabeth’s new goals in mind. And what we will need to store away in another area for another time.

I think as our special needs children grow and change, we need to remember 5 simple rules to follow:

  1. It is so important to revisit their “stuff” and see what is used, what isn’t, what we can store away and what we can perhaps donate.

2. It is important to know that even though what once was an amazing thing in their life, may have served its time…for now.

3. It is a good thing to schedule a time to review their sensory boxes, or “stuff” More isn’t always better…so pick what works and decide what to do with the rest.

4. It is a good thing to have them help you if possible because their input is important and can be a good jumping off point to conversation. I like when Elizabeth tells me what she remembers about using a certain item.

5. It is important to know how fast and often our children are changing and that our best laid plans will always need adjusting. I like to have a plan. Elizabeth taught me that my plan will be changed often. I learned I can do that.

My plans for today include dumping out the basket with Elizabeth near me and taking a bit of a walk down memory lane with her.

Then when we are done, I can look up and rejoin current life and her current needs.

We are all a work in progress.

I wish everyone a peaceful week.

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

I ask the above question because life changes the best laid plans.

For us, we are officially in week two of our fall schedule. I know we could have started ours, (Elizabeth’s and mine) earlier but decided to begin at the same time as Michael, her brother.

So that brings us to week two. And I must say that what Elizabeth and I had planned on paper looks a bit different in real life. Elizabeth is home now due to COVID instead of being in her college program for those with special needs. Part of what really works for her is to have a written schedule for the week and also one for each day. Nothing set in stone, just a gentle flow of what is or should I say, should be expected each day. Her sensory processing disorder ( SPD) can make transitions anxiety producing, so seeing what is scheduled helps with that.

Our schedule was to include work time each day, yoga one morning a week, our walk, cooking on Monday, time to work on her Etsy account each morning and then whatever activity she has in the afternoon, as she has a few virtual therapies.

So, how is it going?

Well…?

I found out that we need to walk first thing in the morning. It takes us about and hour or so to do the 5 miles along with the getting ready and getting home part. So that is a big hunk of time. And if not done then, she either doesn’t feel like it or there isn’t time later. The walk is so calming and quite enjoyable, so we are making it a priority for her.

Then she eats breakfast and starts to relax which is a good thing but also makes transitioning to our Etsy or worktime a big push. And just maybe we haven’t done work this past week…..

I found out that cooking everyone Monday with her is fun as long as Michael doesn’t have basketball practice and I need to take him. If so, then I need to cook earlier in the day and at that time, she is on a virtual class…..so just maybe we need to be more flexible and pick A day, not necessarily Monday.

I learned that I make a very uncreative teacher. If the assignment says type this. I say “Elizabeth, let’s type this” to which she says a whole bunch of things, some positive others not so much. (These assignments come from her tutor.) I learned I need to review the work we need to do ahead of time to present it in manageable chunks.

I learned that putting anything on the schedule past 6pm is basically making the decision NEVER TO DO IT. Yep, I learned that one well. Who knew that that lovely open time of the day was a really bad time for Elizabeth? I thought with her being off, she would be less tired and ready to roll and we could space out the things we want to do. So it is a definite no-go at that time, and trust me, I got the message.

I also learned that working in her room is not ideal, as is working at the den table. It is oddly, the kitchen table that is the unique fit. Not too loud, not too quiet. So again, it is learning where your child will focus best and you will find us at the kitchen table moving forward.

As I said, we are in week two and made a few adjustments from last week and I think it is a bit better than last week, not all the way, just better. I think that by understanding that this whole thing is new to us all, we can allow ourselves the wiggle room to adjust and adjust until things settle in the best way for our child.

I also learned I need to pick up a few supplies for her learning as in I am not sure who took all the pencil grips?! So I will be taking an inventory of what we need. So it you find you need something, maybe take a look at our site to see what fits your needs.

I am writing this at 5:50 in the morning as I love to get up early and workout and get somethings done, I am watching the weather and it is 44 degrees outside, and I am thinking our walk is going to be a cold one today and I also know we will be walking early because I learned it is what works best for the flow of our day.

After all, it is all a learning process for us with our special needs children and they and we are all a work in progress.

I hope everyone has a peaceful week. Please wear a mask! I do for my mom and others who could get really ill

Michele Gianetti

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