Alicia will be taking over Mom Monday this week and sharing Just One Part of the Spectrum of the Human Experience
I am honored and feel very welcomed to be able to contribute to the Mommy Dialogues. I don’t get a whole lot of “me” time these days, but when I do, I like to read blogs like this because of the diversity of parenting experiences. Well, actually, I like to read about the human experience, too. However, since I have become a parent, the human experience has become even more interesting to me. Here’s a bit of mine.
I was listening to NPR the other day, and I was reminded of the magnificent percussionist Evelyn Glennie. Our local station did a morning show featuring a piece she arranged and played on. Evelyn Glennie is a virtuoso. Evelyn Glennie is profoundly deaf. After you read this, will you check out something she’s done? You’ll see what I mean. Disabled? Yes. Amazing? That isn’t even the word! Having spent the last week tearing up every time I hear something remarkable about someone who has a disability and how they have overcome it or made the best of it, I am reminded of my current situation.
My son is three. He is funny, silly, smart, and kind. He loves hugs, loves to play music and sing and dance, he loves to sit in my lap and hear stories, he loves to paint, draw, color, and build very detailed trains and trucks out of his blocks. He loves to watch skateboarding. He can put together a puzzle of the United States that is meant for age five and up. He can name some of the states.
But he doesn’t know how to communicate about his basic needs: I’m tired. I’m hungry. I’m sad. I’m hurting.
Welcome to our experience with autism.
In the spring of 2009, my husband and I welcomed our little boy to the world. He was big! The biggest baby in the nursery that day; the first pic I have of him is our doctor holding him like a prize bass. His head was so big during my biophysical profile, that they couldn’t see the whole thing. Just a pic of him sucking on his hand. So cute.
A c-section was planned for his due date, the day after my BPP, because my doctor had already informed me of my narrow pelvic arch, and how I could potentially cause him oxygen deprivation during birth or cause shoulder dystocia or he would break my pelvis. Or all three. I’m an RN. As much as I wanted that natural birth–no drugs, no separation from my baby–I agreed and my son was born the next day. Healthy. He didn’t cry at first, he had a bit of meconium, but they suctioned him and then he let out a whimper and then a huge cry. Then I cried.
I didn’t circumcise him. During my stay, they asked me repeatedly and I repeatedly said no. I could not do it. I had no religious reason, and my husband and I were firm in our standing not to cut him. His pediatrician came in to see us (she was our family doctor) and saw him cry his first tears while in the hospital. Wow, she’d said. She had not seen a baby make tears so quickly.
Ok, so I didn’t get to give birth the way I wanted to, but by golly, I am doing that baby wearing, breast-feeding, co-sleeping (sort of) thing. I slept when the baby slept. I didn’t cloth diaper. After my eight weeks off, I worked over 40 hours a week as a cardiac nurse, on night shift and my husband stayed at home with baby. I didn’t want to add that to his already increasing list of duties! We had a bassinette next to the bed so when he fell asleep on me, I could place him there. He was fed on demand. He started exhibiting signs of “being different” pretty early on, now that I think about it. He was colicky, sometimes feedings were really hard on him. I was taking in a lot of dairy so I wouldn’t deplete my calcium and Vitamim D. My pediatrician advised me to cut back in case he had a milk sensitivity. She put him on Zantac. He liked the taste (ewww!) and he seemed to get better.
Then, at 10 months, a few remarkable things happened. He was walking, and seemed to be meeting most milestones. However, he stopped being able to poop on his own (he needed help). He was still getting breast milk, but not exclusively. We took him to the ER for abdominal distension because he stopped eating and was hardly drinking. We left learning that though his bowels were full of stool, he also felt horrible because he had an ear infection. He got antibiotics, and then came down with C-Diff. (look it up…it’s horrible.) Probiotics entered our life, and have never left. We took him to the medical center where I worked. One of the best in the world. We saw a pediatric gastroenterologist and an allergist. He had blood drawn, he had allergy skin tests. We left learning that Casein (milk protein) was most likely the culprit for his abdominal discomfort and we needed to cut it out. We were told that maybe, possibly, he might outgrow it, but maybe not.
For a bit more than a week, we took gluten out, too, and watched our son perk up immensely. It was hard, though, with my work schedule and our finances, to sort out a diet plan for him. My job was literally killing me, but I didn’t know that at the time. I was just so tired. Fast forward to his first birthday. His eye contact was not always consistent. He NEVER pointed to anything. Yet he had words, quite a few. He had little to no interest in his birthday cupcake.
It was easier for us to keep casein out of his diet at this point. I tried to myself, but again, work schedule and food options. We supplemented with soy formula. He seemed to get better.
We were still guessing what he wanted. He did not gesture. He did not acknowledge other children unless absolutely necessary.
Skipping ahead. We moved to Georgia for better work opportunities for both my husband and me. We placed my son in daycare for the first time, at a Montessori. Big mistake! While dropping him off one day, I saw an aide yelling at him. He didn’t answer to his name. It was time to go up the ramp to his classroom. She took him by one arm and dragged him up the ramp. Horrified at what I saw, and in shock, like a fool I walked away (that’s what they tell you to do, so as not to upset them further). I went to work and told my peers what had happened. They had me call the school and tell them off. Which I did. I took him out of that school. We sucked it up, asked my husband’s parents for help, and paid for the fancy school in Buckhead that had an opening.
I’d say we got an incredible experience for our son, Graeme. His teachers were wonderful. He was happy. During the parent-teacher meeting, his teacher mentioned to me that she saw early signs of autism. He already knew the alphabet, he knew shapes, colors, entire songs, etc. Super smart, like a sponge, but he wasn’t really communicating his needs and interacting with other children. She told me that it might be her being oversensitive, since she had a daughter with Asperger’s, but she thought it important to tell me so we’d watch for more signs. Graeme had been very sick the first few months of daycare, and I got sick, too. My day job wasn’t working out, and when I asked to resign, the next day they told me to leave. I had missed too many days in my new-hire period. Things were tense.
Jobless and fretting on how to keep Graeme at his prestigious daycare and the bills paid, I took the first job offered to me: a travel assignment. You do what you have to do to support your family, and it was a nightmare for me. I was still night feeding. I had to leave and only came home every few weeks during a three-month period. To say this was heartbreaking isn’t even sufficient. The timing was awful, too. This was a critical time in Graeme’s development. This was when the tides turned. I came home.
He still wasn’t pointing, and still wasn’t telling us what he needed (diaper, food, etc.). He was losing language that he had. I felt like it was my fault. (the psychologist said it was NOT my fault. Autism is autism and it would have happened regardless of my absence.)
Now (sorry to skip ahead) it’s been an emotionally wrenching year for us in many ways. Let’s skip to his sick visit this spring, where a local university is doing a longitudinal study on developmental delays. I fill out the form. In my head, I’m wishing someone had done this earlier for us. Red flags everywhere.
About a month later, we got a call from the study. Graeme had set off some flags (surprise!).
We had to coordinate a visit, which ended up being in June after he turned three. One five-hour evaluation later, and we are told…”this is a diagnosis. Your son has autism.” (He also has sensory processing issues, too, we have learned.)
They gave us a packet full of programs we aren’t eligible for, schools we can’t afford, and therapies our insurance won’t cover. Some of the numbers were out of date. (I hope they have fixed this…I’ve called.)
Since it’s so new, I can’t even begin to stomach everything we are going through. I am taking this day by day, where each little victory is celebrated: Getting an appointment with the school board, getting him to say “I’m Graeme.” Each little defeat is mourned; Graeme is too old for “Babies Can’t Wait,” which the early intervention program. They say there is another one, but we have to call them today and see what they can do. Most people say you have to go through your school district now, and ours had been hard to reach and aloof and really rigid. We are thinking about moving because of this. I’ve had to sit down and miss fun “floor time” with Graeme because of the mountains of paperwork and forms and things to read and digest. Luckily, my husband and I are taking turns with this. Bless the mommas who have to do this alone.
What we have done at home is make some dietary changes: no wheat, no gluten, no casein. I dove a bit more into debt and financed an iPad not long after the diagnosis. We put ABA apps that we can afford on it, games that help with fine motor skills and language and emotions. We do “look me in the eye” exercises, try to teach him to respond to his name (it takes an average of 10 times to get him to turn and look when he’s busy playing). We are teaching him how to ride a tricycle (not as easy as you’d think!). His teachers are informed now at his new preschool; he’s been there almost a year and they love him, but they also know they can’t do everything that he needs. They really do try.
What we want to share with you mostly is that, even though this journey has just started, it’s going to be a long one, and it’s going to be a fight. Fight to stay strong, fight the school boards to comply with the IDEA act, fight the insurance to treat mental health AT LEAST like physical health, and fight the urge to yell at people who criticize you when your kid comes to the store with you and has a meltdown because of the lights and sounds. You get this look…you know the one. The “you are a failure of a parent” look.
We know that this is just the beginning, and we’ve read that, with the right interventions and guidance, and therapy, we might get a child who is the next engineering prodigy or famous artist or local drummer in a rock band. We know that though autism is considered a disability, it doesn’t mean he doesn’t have amazing abilities already and that he won’t continue to explore these talents. It doesn’t change his kind heart, his love of learning, and the magic in his eyes when he hears his favorite songs or gets a hug from Mommy or Daddy. We are so grateful for this, and I don’t feel bad for myself. I feel blessed. My kid is my kid, and he is awesome. I still feel like I won the toddler lottery. Thank you for letting me share this experience with you.
Alicia, Paul, and Graeme have a fund set up to help cover the costs of his extremely expensive education, diet and therapy. If you would like to donate, every dollar helps.