Archives for the month of: May, 2022

I saw the weather forecast….a severe thunderstorm warning is in effect for the counties of… and our county is one of them!

As much as we had been waiting for and praying for ( thank you LOOOONG, Ohio winter) and thinking about Spring, I had forgotten the one part of it that I so dread …the weather.

 To you and me it is rain, some wind and thunder…to Elizabeth and others with SPD it is an entirely different experience. And to add to it, is the ever-present threat of a power outage. That sudden loss of lights is a real and slightly palpable fear for Elizabeth. And I am sure so many who have her disorder of SPD (Sensory Processing Disorder).

It is like the threat of a loss of lights, even if they never go out, can make Elizabeth be very on edge. I know that we have had it go out at different times and as a result, when there is a bank of dark clouds on the horizon, I know just what our Elizabeth is probably thinking.

For those who don’t know, Elizabeth has 2 disorders that affect her life each and every day. SPD and dyspraxia have been a part of Elizabeth’s life since birth. When she was younger, it was SPD that was the one that affected her the most. Most things in her life, felt wrong or offensive to her, and her response was to cry, scream or avoid doing things.

As those who know our story know, it was therapy, work and more of the two that helped Elizabeth get to where she is now.

But it is so interesting and sometimes so perplexing how certain things can bother her to such big degrees and other things don’t.

Will this storm make her nervous all night? I am not sure. There have been times when she will reluctantly fall asleep as she tries to wait out a storm or we will sigh with relief if the lights go out at a random nighttime time, like 2:00 AM because we know she won’t know they went off.

So how do we help her handle this? And how do we try to help her with other things like this?

We talk- As she has gotten older, we can talk with her and hear her feelings. This was not always the case when she was young and had limited words. So we are grateful we can talk, show her the weather map and when the storm is supposed to be past us. We think this helps her feel more in control if she knows more.

We plan- If the weather forecast is one that includes a chance for these storms later, we will remind her to make sure her computer, phone and battery banks are all fully charged. Sometimes this can make her nervous as she sees them charging as if they are a silent screaming reminder of bad weather coming. But we try to assure her that this a good thing to do and that if she needs her phone it will be ready.

We also charge our lanterns (camp type lamps) and make sure she has one in her room if needed. Again, not always is this calming but we know it will be there is she needs it. And she has a flashlight in her room.

We try to do these same things, talking and planning, for her when she encounters other things that tend to bring on SPD anxiety. Because if it is one thing I have learned on this journey with Elizabeth is that SPD does not quit, that it will be there always and sometimes it will show itself and other times it will lie dormant. But it is part of who they are.

So us learning how to help her is the key because hoping it will go away doesn’t really work well for us.

I am looking out the window now and see a slightly blue nighttime sky right now. So maybe the storms are not coming here tonight. But I can tell you that our battery chargers are ready to go!

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself.

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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

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