It Takes a Village

I am the keeper of the family schedule; the homework supervisor; the taxi driver; the laundress; the chef; the boo-boo healer; the housekeeper; the psychiatric and spiritual advisor; the mother; the wife; the tyrant who lays down the law; the director of finance; the glue that keeps the four of us together. Most of the time, wearing all of those hats is a challenge I welcome. Often, it takes every ounce of energy I have just to make it through until the sun goes down without collapsing.

All the mothers I know feel this way, some more than others. Over the last couple of years many have crossed my path who share a common bond, other than motherhood itself. We have children with Asperger'’s Syndrome. To say that this complex disorder makes life more difficult would be sugar-coating the description. It is like being in a war zone 24/7. In the beginning you never know when the bombs are going to hit. After you have been through several hundred battles, you can see the patterns, sense the changes that preface a rampage. Even then, it still tears at your stomach to watch your child disintegrate before your eyes into a violent beast that is so filled with confusion and disorder that he lashes out at you just because you are there.

I am more successfully known for my public speaking skills than for writing. Perhaps it is the way a group of people responds to the spoken word that makes it fun to disseminate information in that manner. For me, the bigger the crowd, the more I love the opportunity to speak because facial expressions tell me more than applause. Being able to read faces, emotions, thoughts, is intuitive for me.

The skill I relied upon professionally failed me with Ian once autism entered the picture. His affect was often blank, his voice indiscernible. I could not read him like I could strangers in a crowded room. How could I help him if I did not know what was going on in his head? He certainly was not volunteering any information. I found myself allowing him to slip away because I did not know what else to do. For the first few months after the diagnosis I was a zombie, trudging through each day, counting the hours until sleep would take reality away for a brief time.

I have found numerous resources to assist my son. Where I found a gap was in resources to help me deal with the tremendous sense of grief I felt because my child is not normal. Parents need support; but what I found at every support group meeting I attended was parents talking about their children's problems and focusing on the kids'’ issues. I cannot recall a time when someone addressed the needs of the parents. All the information about therapies, special diets, and education plans will not help the child if the parents are completely stressed out.

You may find my ideas more relevant to mothers. But dads should participate in the discussion here too so they can understand the unspoken pain their wives are facing. You probably feel it also, perhaps differently, but it is there and needs to be dealt with. Once you have pinpointed a diagnosis for your child, theoretically you have the ability to take the information and run with it, start improving your child's life. In reality, the diagnosis is just the beginning of another long journey, one that starts with the grieving process. When there is a death in the family, friends and relatives gather around to support each other through the difficult times. You need their support even more now, because your child'’s future depends largely on your ability to show him the way with love, kindness, and hope. That cannot occur if you keep the diagnosis a secret.

The title of a book by Former First Lady, Hillary Rodham Clinton, helped me realize this truth with all children, but especially so with mine: It takes a village to meet the needs of a child with ASD. If you are dealing with autism in your own family, I hope you find a village of support here.

link to Lisa Martin's Dallas Morning News article May 11, 2006