Welcome to Summer!

As I am writing this Elizabeth is upstairs in her room relaxing with a movie and what is probably her fifth snack of the day.  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 18 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 our children, 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 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.

I am heading upstairs now to check on Elizabeth and get ready to go to the pool.  She knows that we are headed their next, it is on her schedule.  The sun is shining, the pool is waiting and our beautiful child is ready to enjoy the fun summer brings….her way.

Blessing to everyone for a fun, safe, SPD friendly, summer.

 

“It” Got In

I don’t always let it in.  Those who have special needs children know what I mean by the “it”.  The “it” is the realization and recognition of just how hard each day can be for our children.  Just how much they have to work each day, just to get from morning to night.  I think if I let “it” in daily, I would drop to my knees and want to cry because I would love to give Elizabeth the gift of easy days, days that you and I have, days that typically developing children have. Days where she can say “yes” to playing tennis with her brother, instead of working hard to swing the racquet.  Days she can say “yes” to a movie, instead of having anxiety or days that she can take the car and drive somewhere instead of talking about how she will one day learn to drive.  You know, I am sure, all about the easy days you would wish for for your child.

“it” is alot.  “it” is the biggest small word there is and I let “it” in this weekend.  Probably because we had a quiet weekend, where we could do anything we wanted and it was then that I realized our son had 17 things he wanted to do and Elizabeth and I had trouble agreeing on some things we wanted her to do.  Mainly because of her dyspraxia.   So here was our son zooming off to get baseball mitts and basketballs and over her was Elizabeth slowly agreeing to do some of these things.   She did participate, she did have fun, but the motor planning involved is tiring and at times overwhelming.  Her sensory processing disorder or SPD, affects her participation as well.   But Elizabeth and I have spent many and hour talking about trying things, why trying is a good thing, why saying an “NO” right away is off-putting, why we ask her to try and it is because of this talking that she know we are there for her, to help her and that we believe in her and we  want her to be with us in all we do.  It was right then that I let “it” in and my heart hurt, my eyes teared up and I wanted to scream in frustration that this fun day is still work for her.  That she has to work all the time.

And she tries….hard.  and she works, hard.  and she is succeeding.  But is is work.  I had someone ask me a question at a lecture I was giving and it was “Would you ever wish Elizabeth was like your other children?”  I remember my answer and it was “Would I wish she was like my other children?, NO, I would not because the gifts of Elizabeth are amazing in our life,  Her love, gentle ways and peacefulness are wonderful.  Her love of life is contagious and she is our greatest teacher about life.  So, No, I would not wish this but for her, to have the typical neurological system of her siblings?, to have things come to her easily? to take this hard work from her?  Then YES!, Yes, I would wish it.” “For her!”    I always remember this question because it was more honest of a question than I have ever had asked and it really made me think.

I share this now because “it” got in this weekend. and after such an emotional time I want to share that there are a few things I want Elizabeth to know:  that we are so very proud of her, each and everyday.  That she is so special in her strength and drive and that we love her and believe in her so very much.

I wish you all a peaceful week.

A Book That Is A Must

When I refer to  the author of this book, I always call her our “beloved therapist”  I also call her our “quarterback” and personally, I refer to her as a dear friend.  But her real name is Mary Padula.  She is one of Elizabeth’s first therapists ever and the one who has been with us since Elizabeth was two years old.

Finding Mary, seeing Mary and having Mary guide our way with Elizabeth was truly life-changing. Continue reading