Perhaps it was my youth and inexperience. I was only 20 when my daughter Amara was born, 22 when Gwen came along 21 months after Amara. I was the first person I knew in my social clique to have kids and didn’t have mommy friends or a lot of support. Or it could have just been the way things were done in the early part of the 2000 decade; my daughter Gwen wasn’t diagnosed with Autism until she was four. In 2011 I had my son Cole screened for Autism at 18 months, but back then it really was less straightforward and more like fitting pieces of a puzzle together.
I had a normal pregnancy in the care of midwives and a relaxing, empowering birth at home. Gwen was 9 pounds 8 ounces with outstanding APGAR scores and at birth was the picture of a healthy baby. It was only as she got older that I noticed the differences between her and her older sister. She hated the sling and didn’t like to be swaddled or held close. She never learned to crawl but just scooted around on her butt. She didn’t walk until almost 17 months. She started throwing massive tantrums for no apparent reason. As a toddler she started to bang her head on the floor. But I attributed it to differences in temperament. Maybe I’d gotten the “easy” baby first and a more challenging one after.
Amara was rarely sick and I only needed to take her to her pediatrician for well checks when she was small. We practically lived at the doctors office when Gwen was little. She had constant ear infections as a toddler and ended up getting ear tube surgery when she was 3. Around that same time I expressed my concern that she wasn’t really talking yet (she tried but babbled incoherently) and she passed her hearing screening and then started speech therapy. We did the “crunchy hippie thing” and taught her sign language which she picked up with ease; at three I was signing with her on the bus and a lady said, “Oh is she deaf? How sad.” This was 2003, before signing became more mainstream, and I had to explain, no, she can hear, but has trouble talking, and this way she can express her needs without screaming.
She potty trained but then regressed. And then regressed again. Her doctors assured me it was still in the range of normal for her to be in pull-ups at four. I brought her in because she was having sleep issues and she was prescribed Clonodine. It wasn’t until after her fourth birthday and I made an appointment because she was having massive meltdowns when we would cross the street, throwing herself on the ground in the middle of the crosswalk, that our doctor started to put all the pieces together and suggested an Autism screening. In retrospect I feel he should have seen it sooner. I should have put it together sooner. But I just didn’t know.
She saw a specialist for testing over several appointments and was diagnosed with Autism as a result. I started reading about it and agreed it made sense. At the appointments I asked the doctors opinions on my son Allen, then one, who I was already concerned about behavior-wise. But I was told he was only displaying “typical boy behavior”. After being given a copy of Gwen’s diagnosis the specialist handed me a handful of pamphlets with local resources. I was numb and nodded while accepting them, but I don’t think I knew what it all meant yet.
We went to the library and got books for myself, books for Amara about having a sibling with Autism. I looked through the pamphlets and decided to contact the autism center, they offered free classes and I thought the music therapy sounded fun. I found babysitting for Amara and Allen and took a four and a half year old Gwen into music therapy class. There were a dozen other parents with kids there, most of whom I considered way lower functioning than Gwen. The teacher was friendly and engaging, the kids all participated. Everyone except Gwen. She covered her ears and buried her head in my shoulder and refused to be engaged. I was surrounded by children with Autism and for the first time consciously I observed the behavior of children with Autism. I had to face grouping my own child into the same category as them. I was blinking back tears the entire time. When it was over we left and we never went back.
That was the moment it hit me. I went through a grieving process and it might have lasted weeks, maybe even months before I came to a place of acceptance. It is a sad thing, to let go of the child you dreamt about, the normal one who when you were pregnant with them you’d say “I don’t care what they are as long as they’re HEALTHY.” But I did accept it, and our lives settled into a predictable pattern of speech therapy, occupational therapy, behavioral therapy. I struggled as a single mother working and trying to go back to school, but we always made her appointments top priority. I’m glad I did, because the early intervention brought her a long way!
When it came time for kindergarten the school said she “barely met their autism requirement” and because she already had an IEP for speech that would cover all her needs, they didn’t want to “saddle her with the stigma of an Autism diagnosis” if they didn’t have to. I didn’t know any better so I agreed. Six months into the school year they graduated her out of their speech program and she lost her IEP. I had to fight the next three years and through moving and changing to two more schools to get it back, while her teachers complained of her running out of class during instructional time, or hiding under her desk, or just shutting down and refusing to respond. I often got called to school to “come manage” her because the schools wouldn’t or couldn’t.
Meanwhile, around the time Allen was three, my father expressed concerns about his behavior, saying to me he suspected Allen might have a personality disorder or be psychotic. He was my first boy so much of his challenging behaviors or oddities I attributed to just what Gwen’s diagnosing autism specialist said, “typical boy behavior”. I also think that so much of myself was tied up working with Gwen’s known diagnosis that it became hard for me to devote any extra attention to Allen’s lesser and unknown issues. It wasn’t until he started kindergarten we started seeing bigger problems. His handwriting was illegible. He started acting out in concerning ways. But when I asked his doctor during a well check, “he seems normal to me”.
Allen’s behavior really escalated when Matt deployed for the first time. When we got the diagnosis of ADHD and Oppositional Defiant Disorder plus suspected PDD/NOS it wasn’t a big shock to me. I had, after all, suspected something since he was only 1 year old. A year later we took him for a re-diagnosis and they kept ADHD changed ODD to Conduct Disorder and added Mood Disorder NOS. I’m still not sure that we have all the pieces and the right answers, but it’s better than nothing.
I didn’t have the same shock and grief. I was coping. I went from Gwen being my special needs kid for years and Amara and Allen being my “normal” ones to having two special needs kids and Amara and our new baby Cole being my normal ones. But then we got to Cole’s 18 month check up and he still wasn’t talking. He had the same “mush mouth” when he tried to talk that Gwen had at his age. And I was convinced we were going to have to go through the same things I did with Gwen all over again.
He passed his autism screening with flying colors, which came as a huge relief. However the doctors did agree he had a speech delay and we started speech therapy. Six months later at a follow up appointment they revised his diagnosis to Speech Apraxia.
Today, Gwen is a loving kind hearted girl. She has an IEP again and with it made huge progress the past two years. She made her first real friends last year in the fourth grade which we were very excited about. Lately we’ve seen a resurgence of behavior problems including fit throwing the likes of which I haven’t seen since she was 5 which we attribute to hormones and the onset of puberty, so we started her back in ABA therapy.
Allen is incredibly smart and is in the gifted program in school, but still struggles with his issues, though currently, we’ve decided to try being medication free. I’m finding the medical institution tends to treat kids like him with meds but there is a significant lack of therapies available, and things I feel would be helpful like ABA therapy aren’t covered by our insurance under his current diagnosis. I’m starting the fight to get his own IEP and not looking forward to it, but I am determined to get him the help he needs.
Cole’s speech has come a long way but the way he mispronounces his words now combined with his age of 3 is quite frankly adorable. He is very smart as well and understands far more than he is able to communicate. We are trying to get him enrolled in Head Start and I anticipate he may end up starting kindergarten with a speech IEP like Gwen had. But we have a few more years until we get there.