A Farewell to Autism. A Farewell to Arms.

9 years ago and some months, I gave birth to my perfect first son.  He came out weighing over 9 lbs and observed the world around him with a keener awareness than could be credited to a typical newborn.  My obstetrician joked that I had given birth to a 3 month old.  He slept five hours at a time from his second night home and he laughed and smiled at 5 weeks.  He was unique and my husband and I marveled at how two screwups could have created something so remarkable.  I imagine most parents feel that way - both mystified, terrified, stupid in love, and yet a little suspicious of this character that had so brazenly overtaken our lives.  Lambert had quirks.  He was happiest with a bottle in his mouth and would eat until he vomited and then want to start all over again.  He hated the mall, would cry ceaselessly for hours after we'd left, until he finally wore himself into a fitful sleep.  He would growl in his best demon voice during silent prayer in church, all the while smiling widely.  His name literally means "bright land" and Lambert was that, bright and different, and totally, unabashedly himself.  He did the usual mama, dada babble at the usual time, he rolled over, sat up, walked and such all on schedule.  However, shortly after his first birthday, the bright land became dim.  Where his little body was so full of himself, it began to hollow.  The lights in his eyes clouded over and he stopped his babbling.  He stopped his sleeping.  He became smaller, somehow, while his body continued to grow.  Yes, he'd had his shots right before that happened.  And, too, he'd had two traumatic accidental falls (running before he could really walk) within a week.  One necessitated having a shattered tooth pulled and the second resulted in seven stitches in his forehead.  Both of these required him being restrained, terrified and screaming.  I've never come face to face with my own failures as a human as I did those days, holding my son down yelling at the doctors to just hurry it up and leave him alone.  A couple of months after his accidents, I asked for an evaluation from the early childhood services center in my town.  People told me not to worry, that he was a boy.  Boys develop later than girls, etc.  I was really hoping I was wrong, that Lambert was fine, he was that perfect happy little boy who was just going through some sort of developmental depression.  Not so, they said.  He was behind in language and required speech and developmental therapy in home.  He received those things, along with occupational therapy and a whole host of whatever I could do with him while his newborn brother was asleep (which was rare because baby number 2 was NOT a happy, sleeping kind of child). By age 3, it was time to have Lambert evaluated by the local school district.  I saw it as an opportunity to show off my brilliant, unique child.  The child who would surely be an engineer because he preferred to take apart his toys to see how they worked, rather than play with them like the sheepish masses.  I was proud to answer the questions the therapists asked and proud to watch Lambert as he explored the room and ignored the examiners.  How independent he is, I thought.  And then, I heard it.  The catch in the voices of the evaluators as they spoke amongst themselves.  One woman said "Well, I don't know...I'd really like to see him in his preschool".  Of course, I agreed!  More opportunities to show off my amazing son, who wouldn't?  It was after that visit that I heard the word Autism applied to my son.  My Lambert, my bright land.  When the developmental therapists came and asked the questions they asked, I came to believe that their inevitable conclusion of what had happened to Lambert - that he became Autistic - was the direct result of my failures as a mother.  I'd eaten too much tuna before I knew I was pregnant.  I'd allowed the doctor to vaccinate him with that blasted MMR shot, even though I felt I knew better. I didn't catch him when he fell. I didn't insist the doctors sedated him when he got his tooth pulled, or got his stitches, it was all my fault.  Forget the refrigerator mother.  Try the incompetent mother.  The insecure mother.  And, sure, the drama queen mother.  That was 6 years ago.  I have carried that banner, and that guilt, for 6 years, celebrating World Autism Day as a family holiday, sporting Autism t-shirts, giving to Autism, baking for Autism, decorating my car with Autism ribbons, telling my son's story.  That child has been to every doctor and endured every test known to humankind.  He's had counseling, occupational therapy, speech therapy, therapeutic listening, social skills therapy, diet changes, supplements, you name it.  And, through it all, he's known about that word, Autism.  I explained what it meant, how it applied to him, what we would need to do to help him cope.  You see, we were always lucky because he's been labeled as "high functioning" which means no cognitive delays, he was verbal, though his speech was delayed, he sought social interaction, though he wasn't adept, and he was able to give and receive affection.  For 6 years, we championed the cause of Autism.  And, now, three days ago, he lost his diagnosis.  After a full and complete re-evaluation, Lambert is no longer under the Autism umbrella.  He has been diagnosed with ADHD, which in terms of the spectrum, is a graduation of sorts.  So, I pulled him aside to talk heart to heart, "So, Lambert,  you know all that testing you did at school?  Well, they looked at everything and decided you don't have Autism anymore.  What do you think?"  He pumped his fist in the air and said "Yes!"  And, that was it.  Really?  That was IT?  I expected this big heart to heart talk about what that meant to him and how he felt and all I got was "Yes!"  Granted, a happy yes but to me, it felt like some momentous moment...is that redundant?...anyway...I realized the space Lambert's Autism filled in me was so much greater than the space it filled in him.  It never defined him to him.  To him, it was a word that helped him give himself a pass when he was acting a little weird and it was a word that meant his diet was restricted to gluten free, all natural foods, which kind of sucked, but other than that, it was just a word.  I was the champion of the cause, I was the carrier of the word as something that defined not only my son, but defined me as well.  And now it's gone.  My big symbolic act was to take the Autism magnet off my car..and put it on the fridge because Lambert likes it.  I honestly don't know what else to do but it feels like I came to the finish line of a big race but all the spectators had gone home hours ago.  And, I have all this space in myself that I can now fill.  I think I'll try filling it with all the things that define my children that can't be put into words, or boxed under diagnostic categories, or filed neatly like their IEP meeting paperwork.  Because, really, we have two kids with ADHD now and our house is pretty topsy turvy but I've got to say, no matter what some psychologist, or even I,  like to call my kids, they are Lambert and Maxwell and those are about the only labels I can apply without missing the kid for the words.