“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

A Source Of Strength

I watched her approach the starting line of her track meet.  I am feeling quite nervous probably because I know she is quite nervous.  We have talked a lot about her feelings and she tells me that the sound of the gun as well as the cheers of the crowd make her “anxious”  I love that she is able to tell me these things because, for those who have read my book, she was nonverbal for the first five years of her life and then only slightly verbal for a few years after that.  So, trust me, we have worked so hard on communication that talking with her and sharing feelings is a huge, wonderful thing to experience.

So she told me all the things that make running in a track meet anxious for her but she also told me how much she really wants to run in the meets.  So here is my wonderful child, who has the desire to run so much that she is will push down, deal with, or fight hard against the anxiety that her Sensory Processing Disorder (SPD) brings. Continue reading