I was reading a post today on Facebook from a mom who is going through the process of trying to find answers to the troubles they are having with their toddler. It took me back a few years, to a time in our lives that I felt like life was swallowing us up.
Our third child was born in April of 2009. J, as we all call her, was a stunning baby girl. Born into this world without complications or issue. Within her first few weeks, I noticed that she was different from her older two siblings. She was so unbelievably fussy. The nights were the worst, she’d wake up crying every hour or so and nothing calmed her, she’d nurse and then cry some more. We staggered through this infancy stage with her, doing the best we could with our sleep-deprived selves. J hit most milestones, enough that I wasn’t concerned about development or such, she never rolled much, but she did it, so I figured she hit the mark. As we approached her 18th month I was concerned, J wasn’t saying any words, just making a few sounds, nor was she trying to imitate words or actions. She wasn’t following any simple instructions and seemed overwhelmed by her environment. When I would voice my concerns to others, they would brush it off and say things like, “That’s just kids, they all move along at a different pace.” I remember feeling foolish, I mean there wasn’t anything terribly alarming going on, because she was healthy and interactive with us. So we kept living life.
Once my girl reached two years old, my momma instincts kicked in and I knew that things were not right. The speech was not coming along she was not putting two words together, let alone a short sentence, she was terrified of upward movement even jumping, she played independently not with others, she didn’t seem to comprehend anything we were saying, the behavioral issues were extreme, there was screaming, kicking, throwing objects at others and nothing calmed her. At J’s two-year-old well child visit I explained my concerns to our family doctor and he too was concerned and suggested that developmental evaluations needed done.
Very quickly after the initial calls were made to the names given to us, our home was descended upon with various professionals, there to help us find answers. Mind you, I was in my last month of pregnancy with our fourth child at this time, so life was feeling crazy. It was quickly established that we had developmental delays going on with J. She scored low across the board on every evaluation done, except hearing and eyesight they were both spot on. So therapy began, J was under the care of 4 different providers, all coordinating together, working to help “catch her up” and to calm her. The one thing I poignantly remember during that time, which is causing tears to spill over even now, was J’s sensory issues. Texture, sounds, certain movements or a tone of a voice would inundate and overwhelm her and she would flail, bang her head on the floor, scream and cry. It was horrible for her; it was horrible as a mother to watch. I could see how something that others wouldn’t even notice would feel like a personal attack to her. One of our wonderful therapists worked with us to develop a safe spot for J. After many trials and errors the spot that clicked for J was my lap, so when she would have an episode I would sit cross-legged on the floor with J on my lap and I would wrap my arms around her little body and squeeze firmly, reassuring her that it’s okay, while I rocked swiftly back and forth murmuring the words, “Calm body, calm body, calm body.” The phrase “calm body” was one we would use for years to come, as it was therapeutic for J. It still hurts my heart to remember how out of control her little body felt in my arms, how distraught she was.
For the next year, we had an average of 4 to 5 appointments per week for therapy sessions, and in some areas we saw improvement, some we saw declines. Speech improved through techniques like sign language and visual aids. Behavior was one of our biggest challenges, normal disciplinary techniques were completely ineffective with J, they just frustrated her more and caused more stress for us. I remember one day, I was sitting on the sofa, nursing our then 9-month-old baby girl, and J had finished the drink in her sippy cup, which was cause for instant rage for her. She took the sippy cup and threw it at me as hard as she could, I was not able to move quick enough and it hit me square in the temple. I sat there bawling holding our infant daughter. I was crying because it physically hurt, but also I didn’t know what to do with my emotions, I was angry, I was overwhelmed, I felt inadequate to mother J and I had three other children who needed me too. It was a harsh moment for me, a place of darkness, I couldn’t see a solution and I felt scared.
By the age of three, J was placed in a developmental preschool through the public school system on an Individualized Education Program, otherwise known as an IEP. For any out there that need a definition (because I certainly did) there is a federal law called the Individuals with Disabilities Education Act, or IDEA. This law mandates that the public school system establish an IEP for every child receiving special education services. Well, that was a gut punch, we didn’t see our daughter as “special-ed”, but that’s the category she fell into because she wasn’t meeting standards, she couldn’t even pull her pants up by herself at the age of three, nor understand simple commands. At three, she had the comprehension of an 18 month old. Little did we know how that preschool would become a place of success for J, the educators there were incredible. We saw the biggest strides with J during her 2 ½ years there.
At J’s three-year-old well child visit our family doctor, once again, had a recommendation. He felt it would be prudent for J to be evaluated by a well-respected developmental pediatrician in our area. The wait to be seen by him was long, but it was well worth it. He has been a great resource in helping us navigate through everything and see clearly, so that J is well cared for. So during the summer of 2012, J was three-ish, and had already had her first few months in the developmental preschool when we met with the specialist. The appointment lasted hours, he poured over all her history and medical records, he listened to me explain her three years of life thus far and from there he suggested a couple more in-depth evaluations. At our next visit with him, this doctor sat there with such compassion as he very delicately delivered the news to me that according to everything he has reviewed and his life’s work in this area, that our daughter has a spectrum disorder. I sat there like, what? “What does that even mean?” I asked. He then proceeds to tell me that I may know it better as autism. I felt my world come crashing down upon me at that moment. The next 45 minutes felt like a blur as he explained what this meant. I remember a few key points in the conversation, things I didn’t expect to hear, like, “Mainstream schooling may not be a good option.” Or, “She will need to continue with most of her therapies for an extended period of time, if not most of her life.” There was this one, “Do you have a good support system? The years ahead are going to be fraught with challenges, and you will need people around you.” And this one, a favorite of mine, “You will need to keep a watchful eye on your marriage, the divorce rate among parents with special needs children is astronomically high.”
For those of you that have had your children diagnosed with autism, you may have experienced what I’m about to explain, for those that haven’t I’ll shed some light on the process your brain (and heart) goes through upon receiving this diagnosis. Not that this applies to everyone, but I think many can relate. My first feeling was that of grief, grief for the life my daughter would have lived without this autism diagnosis. Because we were no longer facing developmental delays that would go away, we were facing “a disorder”, her brain was wired different and would never be the same as a neurologically typical person. I felt sorrow in the first 24 hours following the diagnosis. And, if I’m being honest, there was a lot of self-pity going on. I am human, a flawed one at that, and I was struggling to see beyond the diagnosis.
On the second day, there was a sense of relief, because we knew. We knew what was going on now and we could do something. Right?! We could address it. We could figure this out. I bought every book I could get my hands on downloading them to my Kindle, I devoured blogs and websites, I was going to learn about autism. I was going to fight this and conquer! (Hahaha, yeah, there was some arrogance going on there. Be forgiving, it’s a lot to absorb for a momma.)
Then came day three, and every day since then. These days are the awesome days. It was when I realized that autism was not a life sentence, the word disorder shouldn’t even be used to describe someone on the autism spectrum, it wasn’t something I, or my husband, needed to conquer. What changed? Well, I learned from the experience of others, other mothers who had been where I had. But more importantly I learned from adults with autism. What did I learn? That everything was going to be just fine. My girl, my love, she was born with super powers and it was up to me to discover them, because they were there, they were hidden under the speech delay, hidden under the behavior problems, hidden behind her sensory processing issues and hidden behind her social awkwardness.
Let me tell you, it took no time at all to find her super powers once we looked. This girl, Miss J, she’s amazing, she’s artistic, she can remember anything (ANYTHING, don’t try to pull one over on her), she loves to entertain, she is intelligent beyond her years, she is intuitive, meaning she can recognize that you are sad or hurting and she will stroke your arm and love you, she is loyal, she is fierce and passionate, she sees the world from a perspective of beauty. Out of all four of my children, J is the one who will say, “Momma! Momma! Stop. Look up. Do you see all those stars, isn’t it beautiful?!” In those moments my eyes fill with tears and I look up to the heavens and I say, “Thank you! Thank you for this blessing, thank you that you entrusted her to me, thank you that I get to call her my daughter.”
Are we fortunate ones? Yes. We are. Our J is what they classify as high-functioning autistic. She is verbal, she has learned to do all the normal things any child her age can do, she has toilet trained, she eats well and she now interacts very well in social settings. Many parents are facing challenges MUCH larger than ours. Our story is not the story of others. We’ve also made some unconventional choices along the way. We felt that J was overwhelmed by all her therapies and over a year ago we withdrew her from all services. It was a good move for her; she was over-stimulated by the busy schedule. Eight months ago we withdrew J from mainstream schooling and the IEP as well, it was not the right environment for our girl. Although she enjoyed school and being around the other children, her outbursts and aggression increased after she started kindergarten. Within a month of being home schooled she was calmer, more well-adjusted. We have also researched and put into practice some treatments that are considered alternative. Things such as the use of essential oils, removing gluten from her nutrition plan, homeopathy and Brain Core Therapy, all of which have given us measurable success without any risks or side effects.
Today, as I write this blog, it’s hard to remember the mother I was three years ago. I’ve grown as a person, I’ve learned, I’ve fallen and gotten back up, I’ve had bad days (heck, I’ve had bad months), but I’ve had really good days and I am grateful for this journey. As I type, I listen to my spectrum kiddo explain to her little sister where Idaho is on the globe in my office and then she proceeds to show her where Santa lives, followed by where grandma and grandpa in Indiana live and where grandma and grandpa in Texas live. Yeah, we are going to be just fine. J is going to live an amazing life and I’m totally cool with this neurologically a-typical kid.
Love and light to all of you parents who may be facing a similar journey.