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

Pusher? or Smoosher?

I am not sure how many of you are fans of the show “The Goldberg”s”  but it is a real favorite at our house.  And you will find us glued to the television on Wednesday night reliving the 80’s as well as being moved by some serious sentimentality of the show.  The Goldberg’s are about a family, slightly dysfunctional, but full of love.  The mom or “smother” simply loves her children, okay perhaps a bit too much in their eyes.  But I, being a bit of a smother myself, see nothing wrong with her degree of love and hugs she HAS to give to her children.
The one episode, just on recently, is about their daughter, Erica, who wants money to make a demo tape of her singing with the hopes that the tape can be given to TIffany(80’s phenom and frequent singer at malls) at their local mall.  Thereby, in Erica’s eyes, guaranteeing her instant success and stardom.  Sounds like a plan any parent would get right behind and hand over the cash…right?  Probably not!   But the mother does and tells her daughter such positive things about it…then gets quite upset when the Dad does the same.  Why, you ask?  Because in the grand scheme of the Goldberg house.  The mom is the dream pusher and the Dad is the dream smoosher.  Meaning, they balance each other out, but the mom gets to do the good stuff, be the “good guy”
Being the dream pusher sounds kind of nice doesn’t it.  Well this kind of got me thinking about the whole pushing thing. In the case of the TV show, the pushing is easy. As it appears to me, just kind of agreeing to the person’SensoryBlogHops wishes and not really having to think of consequences or the effects that this “dream” would have on others.  We, as parents of special needs children, can not push without thinking of many factors related to our child.
It also got me thinking about the kind of “pushing” that we as parents of special needs children find ourselves faced with upon waking each day.   Do we push because we want to? because we like to? or because we are required to?  I don’t have the answer for that, as I believe everyone’s situation is different, everyone’s child and their needs are different.  But I can speak for myself.
Why do I push Elizabeth?  simply……I believe in her.   I believe in her abilities, her love of life, her kind heart, her sense of humor, that she is amazing,and that we should all have her take on life and its joys.
Why do I push Elizabeth?  Because her disorders are so complex. (Sensory Processing Disorder or SPD and Dyspraxia) typically do not lend themselves to a natural curiosity.  So if there was no pushing to try things a bit at a time ( thank you Warren Fried www.dyspraxiausa.org for this advice) Elizabeth probably would not have really tried anything new very often.  And without trying things, how can you grow and develop?
Why do I push Elizabeth?  Because she continues to show that she can do new and wonderful things.  That as a result, she is PROUD of her accomplishments.  This pride will carry her far!
Why do I push Elizabeth?  Because looking at her bright eyes and just knowing all that she is, why wouldn’t I push her to try things?   Now comes another question…is it easy to be the pusher?
In my case, absolutely not,
It is tiring because the need to break down tasks into small steps and repeat until Elizabeth “gets” it takes so much energy.
It can be frustrating to want to teach something to your child so badly you can taste it, and having them resist or even shutdown.
It can be sad when you have to teach a skill to your child that is something learned by someone who is years younger.
It is heartbreaking to see tears in your child’s eyes when they want to do something and struggle so very much.
I know that on this journey  I have found the energy to counter the tiredness, the inner resolve to overcome the frustration, the good in the situation to push away the sadness and the joy in simply loving her so much that puts my heart back together.
I push because the situation I am in, the one we are all in is one that probably never crossed our minds as we first gazed on our child.  Maybe others cannot truly understand our drive and focus, but we know how very much we love these special children and would do anything for them,
I may not officially be Mrs Goldberg, but I hope I will always be the pusher.
Wishing everyone a good week.