My name is Eve. I am 34, married and mother of 3 daughters. Mason,9, is incredibly creative, an artist, funny, generous and total drama queen. Natalie,3, is the girly girl I have always wanted yet can kick a ball with the best of them, so sweet and totally loveable. Camryn,7, is curious, affectionate, hilarious, and quite often a real challenge, as Camryn is also Autistic.
The day we were told our daughter had autism was the day my rose colored glasses cracked and I threw them away. My "perfect" life was no longer and I had a pity party for myself that made Mardi Gras look lame. Having worked with special needs children before I had married, I knew all about Autism, yet really paid it no mind, because, that was other people's issue, not mine.
When Mason was born, she was all I could have hoped for and more. A bright, social baby, everyone noticed her wherever we went. As a new mother, I loved the attention. She was ahead of almost every milestone and at fifteen months of age, when I discovered I was pregnant again, I could not wait for the repeat performance.
Little did I know, that second time around would be nothing like the first.
When Camryn was born, she was 6lbs.8 oz., she scored well on APGAR and all appeared fine. She did all the things newborns do....cry, sleep, eat, poop, repeat. As a young mother with a not quite two year old and a new baby, I was exhausted and overwhelmed, but managing. As the months went by I paid no mind to Camryns lack of head control. She was still very young and her head seemed kind of big for her still, so I just chalked it up to that. My best friend Anna, who is like a mother to my kids, took notice of Camryns neck and suggested I ask the doctor about it. Next day I had a diagnosis of Torticollis. I had never heard of it either. Basically it's a tight sternocleido-mastoid muscle (try saying that fast) which causes the head to tilt to one side and can cause that side of the face to appear more flat than the other, but with physical therapy can usually be completely cured. Whew!! No biggie. Three times a week we visited All Childrens Hospital for 45 minutes of physical therapy. It turned out Camryn had a pretty severe case and ended up having to wear a "Tot collar" which is kind of like a clear tubing "choker" that holds the head up and is to be worn two hours a day. Camryn hated it and I hated making her wear it, but when I looked around the hospital at all the other things that could be wrong with my child, I thanked God for her health and fastened her collar. I remember telling the therapist that I really hoped we could get her face evened out because I didn't want her to be 5 years old, looking in the mirror and thinking she was different than the other kids. Little did I know that it wouldn't matter how she looked.
As the months went by, I noticed that Camryn wasn't reaching her milestones as she should. At 5 months she still wasn't rolling over. At 8 months no signs of crawling or sitting up. She also did not want to be held close and would arch her back at the first sign of any cuddling, something I knew from my earlier days was a huge red flag. I took these concerns to her pediatrican as well as her therapist who both relentlessly assured me it was completely normal for a child with torticollis to be delayed in meeting physical developmental milestones and that in time she would catch up. And the arching? Probably because everybody was stretching her neck and messing with her and she just didn't want to be touched. Okayyyyy. Still young and naieve I went along, but a mother knows and my gut would not stop twisting. I nagged her pediatrician for referrals to specialists " just to be sure" and he sent me every time, but I think it was just to shut me up. With each vist, whether it was the orthopaedic surgeon, the genetic specialist, or the neurologist, it was agreed that something wasn't right, but they all had their own theories and tests and at the end of the day, none of them had an answer.
Finally at 15 months, we were referred for an evaluation by Early Intervention. After more than a year of me telling doctors, therapists, specialists that something was wrong, there it was on a piece of paper, ink still wet from the printer.....Severe Developmental Delay in ALL areas. At 15 months of age, Camryn was functioning at a 5 month level at best. Although I knew it in my mind, print always makes it worse. I scooped up Camryn, who was still not walking, took the paper and sat in my car and cried. I looked back at Camryn, completely oblivious, and my heart ached.
A home teacher came out to the house twice a week to work with Cam. She sang her songs and read her books and truth be told, basically just gave me a break for a half hour. Cam wasn't progressing and two months later, at 18 months old, she started attending a center for developmentally disabled children 5 days a week. The first day I sobbed uncontrollably. Not so much for leaving her at a school for the first time, but for the reality that I had a child at this school. Not only was it in my face and on a paper, now it was official. My baby was "different" and here she was at this school for "different" children. I know it sounds so ugly, but that's where I was at that point in my life and I could do no more than cry all the way to the parking lot and then all the way home, grieving the loss of innocence.
It would be another year of living under the very large umbrella known as "Developmental Delay" before a new neurologist moved us to a slightly smaller umbrella known as PDD (Pervasive Developmental Disorder). And 6 months after that, our permanent location under umbrella number 3, Autism. The word rang in my ears, pounded in my head and just about stopped my heart. And after he delivered that news, the neurologist proceeded with " her future looks grim" and as if I were in a canyon the phrase echoed through my head "future looks grim, future looks grim, future looks grim..." Obviously this guy was not going to take home "Sugar Coater of the Year", which I can appreciate, but DAMN! A glimmer of hope would be nice.
I am happy to say that on a return visit three years later, the doctor changed his prognosis and said that Camryn had come a lot further than he expected, although he poured salt in my very open wound of " You know she will never be able to live on her own". Yeah, I know.
So here we are, 7 years, another child and even a television show later (we were featured on Discovery Health in a series titled "Truth Be Told I Have a Child With Special Needs" in December of 2009). Life is....well..interesting. As with everything, there is good and bad, challenges and triumphs, ours are just a little different than the average family's. Hope you enjoy the ride!!