As I am writing this Elizabeth is upstairs in her room relaxing.

She is calm and happy after having had a rather full day.   Seeing her like this reminds me of the times early in her life when calm and happy were two very rare commodities. Early on in her life, when we did not know what disorders she had we could simply not help her.  Once we knew what she had, it then became up to us to figure out HOW to help her.

One thing I we did was read, any and all we could, about the disorder of SPD.  This is one of the most important things to do because once you understand what Sensory Processing Disorder or SPD  is, does, and means for a lifetime, you will be able to start to understand your child and why they act and react in certain manners.  Because SPD can affect each child differently, it is important to know the most you can about YOUR child.

We were able to get ideas on how to help her system stay calm and to get an understanding of how SPD affects Elizabeth.  We are now 24 years into this journey with our daughter and as such our understanding of this disorder and its co-morbid disorder of Dyspraxia have grown.  We have truly experienced a veritable lifetime of experiences with these disorders, some have been amazing successes some have been huge struggles, but with that in mind I wanted to offer some thoughts on how to help make summer, for those who are planning summer activities with SPD in mind. And hopefully keep the fun season it should be.

SPD KNOWS NO SCHEDULE

Summer is supposed to be a fun-in-the-sun kind of time but something I learned early on is that SPD does not take a break for summer!  I think it is important to know that summer can actually bring about more challenges because your child will be challenged in facing new situations and sensations than are typical as well as changes in routines from the school year. So, you can prepare ways to help them adjust to a new schedule as well as have fun.

MORE IS NOT ALWAYS BETTER

I said it before in MANY blogs and I say it again!!! I can remember early in Elizabeth’s life those trips we made to accomplish my LONG list of errands.  I could see that she was close to a meltdown but I thought “just one more store, I can run in and out quickly”  well, of course that did not happen but a meltdown sure did.  I learned that sometimes it is better to go back later for that LAST stop than it is to have the fallout from a meltdown.

KNOW WHAT THEY NEED TO CALM DOWN

I know that now Elizabeth loves to be in her room, lying under a heavy down comforter with her scented, battery candles on and in a quiet room.  This is her “go-to” scenario when she is overloaded.  Whatever it is that your child needs to calm down their system, offer it to them when you see the first signs of a meltdown.  It helps to talk to your child about your plans BEFORE they are in the throes of the meltdown.  In other words, take a moment, when they are calm, to tell them how you are going to help them when they feel overloaded.  This way they know what to expect and you know you have a plan to help them.

MAKE A SCHEDULE

I mentioned how their schedule changed from school to summer, so try to make a schedule of events for the day on a wipe off board.  This helps them stay organized and takes away the anxiety of “what comes next” Since transitions can be hard, helping them plan ahead really helps.  Plus the wipe off board allows for adjustments to be made as the days unfold.  Our schedule is quite loosely planned but it does the trick.

GO WHERE THEY LIKE

A pretty simple thought but truly one to do.  We used to, shall  I say, offer a trip to the park or the bakery as the “treat” for a good day.  Sure you can call it a bribe if you wish, but having that special something does help.

APPRECIATE THEIR GIFTS

I had a friend many years ago, who was the queen of spontaneity.  She would get up in the morning on a summer day and just take her three kids and go…anywhere…everywhere…anytime…all the time… No real plans, no real schedule and no real problems.  Her children learned that this was their summertime life with mom.  Sure they were a bit cranky from their cat naps but overall, she pulled this off. Me? I would talk to her in the morning and politely decline joining them on their day because I knew Elizabeth simply could not do it.  I would hang up, look around my house, and feel??? envious? angry?  wistful? …suffice it to say I felt ALOT!   It is hard not to have these feelings but our children bring so many gifts to us that once you see them, you will cherish them!  Elizabeth has the kindest heart, she CARES how others feel, she loves life and people ( how many can truly say that), she has been my greatest teacher about life…the gifts are there!!!  Our children are amazing individuals.

HAVE A BACKUP PLAN

If you think your child will love the fireworks but have never been, have a plan for what you will do if they cannot handle the noise.  If you are sure the water park will be loved but your child screams instead, have a plan for how to handle this.  It is far easier to take the time to plan out “plan B” than to try to deal with a meltdown while your other children are sitting there with their waterpark armbands on, waiting to keep playing.  Offering out life’s experiences is what we need to do but we also need to recognize the role SPD may play in the experience, since SPD does not take a break.

Now is a really good time to start looking at what shape your summer will take, to make plans ( A, B and C) and to really enjoy having the chance to make memories together.

I wish everyone a peaceful week!

Michele Gianetti author of I Believe In You

Last night Elizabeth just clicked into her 5th lesson with our new art teacher.

I have to say that this art teacher is amazing! Her personality really fits so well with Elizabeth. She is upbeat and encouraging.

I know that for Elizabeth, following directions can be challenging. Due to her dyspraxia, the concepts of over, under and next to and pretty much a whole batch of other prepositional phrases, can be a struggle for her to work with more so when she is nervous or upset about something but sometimes it is just because she has dyspraxia. So, I know that these lessons, without someone actually next to her, can be harder but she is learning and working so well with this new teacher.

This is where the timing of the lesson is important. I have learned that from years of therapies with Elizabeth, that just a random time for an appointment does not always work. I learned that before when it was just me making plans, and now that it is Elizabeth and me, that WE, think about what else she has the day of the appointment and if those will make her tired or anxious or just plain overloaded. This can make the appointment have little overall value. I know that you or I will be tired but think Oh, I forgot I had to go the the_______at 5 but I will be happy when its done.

We push through a late or early obligation but for Elizabeth, and other special needs individuals, this just may not be something they can do without an issue.

Just this week, Elizabeth had her art lesson scheduled for 6:30 on Wednesday. Now this was actually a well thought out time because that day she had very little. In fact, it was a fun day for her and I. We walked her 4.2 miles route, picked up a little lunch and went to the library.

So Check!! The day was not crazy busy.

But how were we to know that for some reason, she had a really bad night of sleep the night before. This was evidenced by the “sleepy music” that was playing at odd hours all night. We could hear drifts of the music at 11:30pm, when it woke me and at 4:30 amwhen I get up to workout. The music only plays when she puts it on as there is no repeat.

So what maybe 4.5 hours of sleep for her?

This was a variable that was not expected.

So when 6:15 arrived and her timer went off so our “Roommate” ( see previous blog on this) could get herself ready…the signs of fatigue and overload were showing themselves.

She started struggling with how to navigate her computer, click links and her voice was getting that lovely irritated sound to it (sarcasm)

She eventually got herself on the Zoom call (with moderate assistance) but she hung in.

The end result was of her efforts was an immediate warm greeting from her art teacher, who has the experience and personality that JUST FITS!

I am always so pleasantly surprised when I see just how great Elizabeth does with any Zoom meeting. She began talking away to the computer on the stand, and I was so very thankful for those special teachers who just make that difference for our children.

They do a job that requires such special gifts from God.

So thank you to those who chose this profession and thank you to those who share your gifts, love and caring. Elizabeth’s stress, and fatigue were no issues for this teacher.

The beginning was shakey but the lesson itself was great.

Again, grateful doesn’t cover it.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

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