The Trajectory

The Trajectory

Getting the diagnosis of your Special Needs child, whether it be Autism, 

Asperger’s,Syndrome, Bi-Polar Disorder, ADHD(attention deficit disorder with or without hyperactivity), Cerebral Palsy, Down’s syndrome, Lyme disease, Reactive Attachment Disorder or any other disorder/disease/syndrome is a double edged sword. At first, we usually don’t want to hear that anything is “wrong” with our child. We may feel devastated, confused, depressed. Sometimes we go into denial and don’t believe the diagnosing person is correct. Sometimes we are relieved to have a label; and the understanding that can come from that is helpful. And of course, most of the time we go through all those feeling states many times throughout the child’s life....despair, understanding, acceptance, worried sick, hopeful, and back to despair depending on the day.

In the beginning, parents begin the huge undertaking of educating themselves about what is going on with their child. It is a daunting task. What therapies/medicines will really help?  There are so many choices to make. I wish there were manuals with decision trees to guide us. Or that there were a specific place that we parents could go to consult experts. But often it is word of mouth. Even pediatricians don’t always know what or whom to recommend. When I consulted my wonderful pediatrician (I really did like him!) about certain behaviors that were of concern to me, he told me there could be nothing wrong with my daughter because she was reading at age 3. Little did we know at the time that hyperlexia (reading very early) can be a symptom of Asperger’s. I often find that Mothers “know” when something just isn’t quite right, and I’ve seen so many of them having to figure out what to do by doing their own extensive research. You go, Moms!

The thing is, that this is ongoing. Each stage of development brings new challenges and dilemmas. I once talked with a mother who had a child with Cerebral Palsy and brain damage. She told me that when her daughter was diagnosed and she was told that her daughter would not progress much beyond a two year old level, she thought to herself that she had wanted a baby for so long that having a baby forever might not be so bad. I spoke with her when her daughter was 4. The mother was still having to dress her daughter and change her diapers everyday. The drooling was constant. This mother was weary and she had a very different perspective on having a forever baby. 

This week in our support group, the topic was worry.  Four of our Moms were sick with worry about violent episodes their sons and daughters had been having.  They were worried about their own safety, that of other family members and their child’s future. How do you hold this? You want to believe that it is an isolated event and won’t happen again. But then, it does. Whom do you consult about this? Once again, you have to do your own research and find the best therapist and/or psychiatrist you can for therapy and medication. Many parents do NOT want to medicate their child..... until they get to the point of violence. How can these Mothers get out from the constant worry to find some solace, some peace, some hope, some little joy? We know that stress causes disease and illness. They fear for their own health. 

Many Mothers tell me that since their child has been diagnosed, they have made it their full time job to “help” their child. They don’t know anything else. That is actually why I believe support groups (and hopefully this blog) for these Mothers are essential. They have to have some sacred space to tend to themselves, their hearts, their souls. A place for their tears and despair. A place for them to say how bad it really is and have every other mother nod knowingly. You are not alone, even though you probably feel that way. We other Mothers are out here struggling, too.

One last note. There comes a time when your Special Needs child will be an adult. And then we need to figure out what we can control and what we cannot. What do we need to accept and let our child struggle through to find his/her own way? The worry doesn’t stop, but the child no longer will do what we say or recommend. That is a difficult process to bear.

So, I urge you to find something for just YOU no matter what is going on with your child. It will benefit everyone in your family for you to have something that makes you feel better. I’d love to hear from others how you are claiming something for your heart and soul.