The Unwilling and the Unbelievers
Coping with People Who Don't Know About or Believe in SPD
Almost all of us, in the beginning, were suddenly faced with the Unwilling and the Unbelievers. These are the family, friends, doctors, and teachers who do not know about SPD, and some who do not care to know about it. And this may cause parents a huge dilemma and challenge.
SPD Therapy is a whole family therapy. It must be all-for-one. The therapist can only give one, two, or three maximum hours per week to our children. And frankly, that is not enough if the child returns to a home where there are members who do not know, believe, or support the therapeutic process. For this therapy to work, and work well...it must be done at home, and if possible, some of these principles applied at school. Especially in the beginning, many children need calming input at least every couple hours, to maintain an optimal state of calmness, alertness, and focus.
Our greatest wish...is that our families, friends, doctors and teachers would want to know, learn about this with us, and try to do what they can to help. But unfortunately, that does not always happen. They ask, "What is it?" and the new parents, barely understanding the terminology, much less the process, are unable to explain it to them.
Many of these children are in therapy one, two or more years, before a parent is comfortable 'going it alone'. And the therapist helps the child go from severe to mild. This is not fast. But with the parent incorporating a sensory diet at home, it is sure progress, with an occasional setback, just the same. When you wonder, in the face of denial and criticism, if this is the right thing to do for your child, after all? Ask yourself is there a line of people waiting to help your child? Does anyone else have a plan, that will change the course of your child's life?
Because that is what you are doing; changing the course of their entire life. Teaching them healthy ways to cope, feel better and survive in this world. You are giving them possibilities that were not remotely possible without therapy. Is this worth fighting for?
So, lean on us who have been on this road awhile, we are here for you, after all. By this time many of us do understand the confusing terminology, and can explain it in simple terms. To help someone in your child's life get with the program, please do not fight, but try to enlighten them instead. What I have had countless parents do...is give these people an easy to understand explanation of "Just What is Sensory Integration?", with an attached "Symptoms of SPD Checklist", with their child's symptoms highlighted. Then walk away, and let them read and digest this information.
If they want more information, then we give them a copy of Carol Kranowitz's book, "The Out-of-Sync Child" or Dr. Lucy Jane Miller's "Sensational Kids" to read further. Or we print off information about Sensory Processing Disorder from SPD Support. If they do not want to listen, read, or understand what is happening with your child, then it is up to you to make the decision if their influence with your child is so negative it compromises your child's progress.
Many of us have had to stop, or reduce certain people's influence in our children's lives. For the time being. Later, after they progress in therapy, you may be able to let them back into the child's circle. Or you may not. Your child is counting on you to help him. You are the only one who can, really. Just you. He cannot speak for himself. Only you can.
Are you willing to let anybody destroy the only real possibility for your child to lead a happy life? Because that is the decision you may be making if you allow anyone to undo what therapy and your help is doing for your baby.
And we do not stop. We try again, and again. We listen to what the teacher, relative, friend, doctor has to say, we smile and nod, then we insist. Should I say that one more time? Smile and nod, then insist. : )
It's not easy. Who said it would be? It's not a quick fix. It is a chance, a possibility, and a hope...that your child will get better. That your child will not only lead a happy life, but also be in control of himself, unafraid to face his world and be everything possible that he can be. Only you can give him that chance. Understand your role is vital to your child getting better, and without your total support, that's not going to happen. Make a choice: fight for your child, or let other people take any possibility of a full life away from your child. Are you going to allow it? I hope not, but it is up to you.
Your baby is counting on you.