I generally paint the experience of having a child with Autism in a rosy light. This because I really do feel positive most of the time. My son is so bright and loving and interesting and he has made huge progress each and every day.
There are fleeting moments of pain and despair. When I see his differences and I worry..will he be bullied? Will he have friends and girlfriends? Will he be happy?
When I see my son sitting in his big wooden rifkin chair at school it pinches my heart, this reminder that he is not like all the other children in class. He needs a special chair to remind him where his arms and legs are. When I see another child the same age having such extensive conversations and I realize that we are not there yet and it may be years before that happens.
It can be bittersweet, but always I try to be filled with hope and love and teach my son to expect the very best from himself and from life.
1 comment:
POSTED BY ADD-Boston's Mom
My Precious Girl,
As a mother you know only to well how much your children’s pain tugs at your heart. As a mother I am painfully aware that you have had more than your share of life’s challenges from saving your sister’s life and all the responsibility I see you have carried over the years worrying about your one and only siblings health and well being only to have your concerns reinforced with the constant reminders with every new scare that your sister has had along with and the awareness your sister will endure a life time of repercussions.
You were only 11 years old and your life changed in a single moment, from a serine life spending the days on the beach to a life no child should every have to experience. It breaks my heart that I had no way to stop the pain, change what was happening, no way to make it go away. You quietly suffered and endured and I observed my child who must have felt like Alice in Wonderland, nothing made sense. Your safe and secure life as you knew it was gone and all the attention was focused on your seriously ill sister and you were alone.
The reality of hearing those words “autistic – pervasive developmental delays” ONCE AGAIN LIGHTNING STRIKES, your first born, an incredibly beautiful child with all the hopes and dreams a parent has for there child were now altered.
Seeing your son the only child in his class in a supportive chair was a smack of reality, a visual reminder that instantly crushes your heart. Just as you experience a life of serious health concerns for your younger sister’s health issues “only to have those feelings come flooding back with the visual display of your precious baby boy in constraints as you watched helplessly”. Once again you have been given a painful experience that would not go away over night. Double whammy, my poor baby, I wish I could take the pain away for you.
Your son is an extremely bright child, who truly has a face of an angel, with an incredible gift for learning and more importantly his interest in learning, he is a happy child, he has friends, his sister mimics his every move (does that remind you of anyone?) and his cousin Josh idealizes him. They are as close as to one another as brothers. They all play and yes the play is now interactive. Your sons ability to love, to care, to feel emotions, and I love that he look into your eyes and says things like “Are you OK Mommy?” That speaks volumes!!! He now gets concepts, obviously feelings, caring, his communication skills improve every day, he expresses anger with words, his needs with words, his happiness with words, albeit brief and to the point. He has come so far and he will catch up and maybe far surpass many other children in so many ways.
The fact that Mike saw something in Jeff at a very young age that gave him the feeling his son was autistic was the eye opener we all needed. Your son didn’t display signs the general public would think one would have to be described as “autistic”, but Mike saw it. When you think about it, that was kind of a miracle.
That is when you jumped into action, I contribute most of his progress to you and your never ending efforts, the fact that you don’t hesitate for a minute to do what has to be done to get the needed services lined up, fighting for services that the so called professionals decline and your refusal to except what you know intuitively. Your ability to not only see what your son needs but the strength and courage to face the facts and the no how to instate the services that are necessary.
We know only too well that life throws obstacles in our path. It’s what you do with that knowledge that makes the real difference. Sadly we have both seen that many people go into denial and the very important action that needs to happen is either delayed or doesn’t ever happen.
Your early intervention was a defining moment, it altered what was thrown in your son’s path, as the Neurologist said Jeff will mainstream, he is bright and gifted in many ways. He also shared that he himself has autism and said “It wouldn’t be too bad if he turned out like me would it?” Keep in mind what Jeff’s Neurologist accomplished and I am almost certain he didn’t have the intervention your son is getting, given he was a child so long ago.
The painful moments brought on by the visual reminders you will observe watching your son face and the challenges he must endure, the pain an heartache you will feel are very real and normal reactions. You wouldn’t be the loving, deeply caring, wonderful mother and daughter I know you to be if you didn’t see and feel that pain.
As your mother the mother of 2 girls that have had more than their share of painful experiences, you were 11 and your sister was only 8 when the world came crashing down. Like mother like daughter, as a mother who feels her daughters pain and a grandmother who feels her grandson pain and sees his frustration when trying to pull the words together to communicate with the detail he would like to communicate with, considering his he been able to read since he was 2 must create confusion and frustration. Knowing he will have to endure and try harder than other children to overcome these delays. But I know and believe with my whole heart that he will overcome EVERY ONE OF THEM! He will live a very happy and successful life.
Stop and give yourself a big hug and pat yourself on your back and say “GREAT JOB KELLY!!”
Love Mom
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