That's the Job

A friend of mine shared a blog post on Facebook today from The Crumb Diaries at https://www.facebook.com/TheCrumbDiaries/posts/528766197213735 . It prompted this train of thought....

Our daughter, Jennifer, has Aspberger's Syndrome and Pervasive Developmental  Disorder. Although we knew Jen was a slower learner than her siblings, we didn't truly recognize a problem until we still could not understand her speech at age four.  By age six, she was steadily losing ground when compared to other children her age.  She had difficulty learning how to read, socializing with her peers, and communicating with anyone outside the family.  You know how you get an ear worm, a song that gets in your head and you sing it all day? Jen's ear worms went on for years: Jingle Bells for over two years, the first line of the national anthem for about a year and a half, and then Fur Elise lasted about 4 years.  At age 10, she still could not tie her shoes, count change, tell time. At 12-13, she was compelled to say the word "chicken" as soon as she walked in a room.  This later evolved to the word "butthead" and then "bumblebee".  Oh, there were so many things she hadn't learned that other children her age had mastered years before, and so many compulsive behaviors that she could not control. 

But along with her compulsions, we also recognized that Jennifer was a very bright child.  In school, she could barely speak or add 2+2, while at home with us, in her comfort zone, she made up songs and stories, created elaborate games, designed houses and clothing, and could draw just about anything she saw. She loved animals, and was a responsible pet owner, feeding and watering her animals.  She helped around the house and could perform any chore after a single explanation. She is much like me, a "question girl," curious about everything. She had no problems understanding any explanation or asking more questions to truly comprehend a situation.  

But in school, she was failing miserably. She had no friends, and was falling further and further behind academically. We had a dozen evaluations performed by a plethora of highly educated people who diagnosed her with mental retardation, ADD, major depressive disorder, social anxiety disorder and, it seemed, whatever diagnosis they favored that particular day.  My favorite? The school nurse who observed Jen in class for 15 minutes and diagnosed her with ADHD because Jen was doodling.

You cannot imagine the frustration when  the "experts" won't take the time to listen when you KNOW something is wrong with your child. Jen was locked in a prison created by her own mind. She was miserable, unhappy and sad, and we couldn't help her! It was a living nightmare. She was in 6th grade before the schools finally recognized there even was a problem and agreed to test her again. She was well into her teens before we finally found a counselor who took the time to observe her, gain Jennifer's trust, truly get to know Jen, and ask us the gazillion questions necessary to get a true diagnosis.

But once we figured out what was actually wrong, and how to deal with it. Jennifer's progress was absolutely magical! Summer before last, when she met my friend, Jess Plants, we had a moment similar to when Helen Keller connected the feel of water with the word "water." Jen met Jess and actually asked Jess a question directly. Not only was she speaking to a total stranger, she initiated a topic in the conversation! For a child who had been locked inside herself for so very long it was just----it was miraculous. Max and I both looked at each other with tears in our eyes. We knew then, we just KNEW, she was going to be OK.

Over the years, though we recognized Jen was different, we never made excuses for her. Why would we? But, oh my goodness---we fought MANY battles with those who belittled her and asked us questions like, “What is wrong with her? Is that child just stupid? Why don't you make her act right? Can't Jennifer just act normal for once? There's nothing wrong with that child, she's just lazy.”  Once, as I was getting Jen from school in third grade, I asked the teacher, "How is she doing?" In front of the whole class, the teacher responded, "She's fine, she's just slower than the rest of the class and weighs them down." To this day, I still want to slap that teacher. I was very proud of my self-restraint that day when I asked the teacher to join me for a moment in the hallway and made it very clear she would NOT talk about my child that way again with anyone but us. When a particular loved one started making derogatory statements about Jennifer's behavior in Jennifer's presence, we left their home and never left Jennifer alone with that person again. There were many times we fought this battle for our daughter, protecting her from malevolent attitudes that might destroy the self-esteem she fought so hard to attain.

Our general response when anyone asked was always just “What the hell is 'normal'? Jennifer's problems do not define her; they make her stronger. The very fact that she understands her issues, and has the ability to learn coping mechanisms proves that Jennifer is exactly what we always knew: a beautiful, generous, creative, smart, funny, loving person. She is our daughter. Just as with our sons, we have her back for the rest of our lives. We would lay down our lives for any of our children, without question or hesitation.

Jennifer is 21 now, and she still has rough times ahead. She must live with these issues the rest of her life. But she has come such a long way. She has friends and family who love and support her wholeheartedly.  She's not afraid to talk to people, crack a joke, to be herself, and have pride in herself JUST THE WAY SHE IS.

We never stop fighting for our children. There are no coffee breaks in parenting. It's not an issue for debate; it is what it is. We're parents. That's the job.