Thursday, August 27, 2015

Parenting Children After Autism

My oldest child, Julianna, was diagnosed with autism at almost age 5. During the 2 years that preceded this, there were other diagnoses of developmental delay, hypotonia, and sensory processing disorder that occured right around when our second child, Blake, was born with a rare blood disorder called mastocytosis. His mysterious and frightening symptoms consumed the first two years of his life, and simultaneously I was trying to figure out exactly why Julianna displayed odd behaviors and lacked social abilities. Needless to say, it was a very trying time for me as a mother. Once I knew for sure that Julianna was on the autism spectrum, it meant that I not only needed to seek help for her needs, but also to watch Blake closely for any symptoms he might show at his young age. Could autism happen again? Autism was so new to me at that stage of motherhood, but I feared it happening twice.

So I watched my second child grow and develop normally, but if he ever shook his head, or flapped his arms, or didn't make eye contact, I would wonder. If he ever lined things up, withdrew in social situations, or lost language, I would worry. Every mother of an autism child knows the red flags, the warning signs. The signs that came and you silently wished they would disappear, or you pushed them to the back of your mind, telling yourself that she'll grow out of it, she'll get better, she'll stop.

Turns out, Blake does not have autism or anything else on the spectrum. His mastocytosis symptoms calmed down after age two. He is what autism parents would call "neurotypical." I could move forward, focusing on Julianna's needs, now that Blake's health was improving. So I started fighting for services for our daughter, in school, and through doctors, regional centers, the list goes on. I was learning what autism was all about, and how much it can change the dynamic of a family, the perspective of motherhood. Autism somehow consumes a family; it becomes the center of everything and largely dominates the family's well-being and often, happiness. When she was okay, we were okay. When she had behaviors that were out of control and terrifying, we were the same. It's a constant up and down battle.

Having another child always seemed like the plan, but considering what we had been through, we decided to wait a little longer this time. Which was a good thing, because both my husband and I ended up having some health issues ourselves to work through. Once we got through that and had a chance to breathe, I became pregnant with our third child. And knowing our history, there was only one thing we hoped for: a healthy, normal baby. So we prayed, every single day, also acknowledging that God had a plan for us, and we would be okay either way. But we really tried to have faith that this baby would be fine, born without any challenges. I didn't want to have to look for those red flags or warning signs. I just wanted to enjoy being a mother to my child, watching him grow and develop.

On the day of Nathan's birth, we discovered he was born with a birth defect called bilateral cleft palate. Suddenly our new baby needed an entire team of doctors right away, and we spent an entire night with them trying to discover a way to feed him, which we did. We were told he would need surgery to repair it, and that he might have speech issues as a result. We really had no idea what his future held. But I got through those early months, learning to feed him with a special bottle, and pumping as long as I could. I remember being so worried that he didn't smile until he was 6 weeks old. I was literally counting the weeks, knowing that smiling late could be a sign of autism. I felt like I always had to be on the look out for things like this.



A few weeks before his palate repair surgery and ear tube placement, we got a call from the geneticist. Nathan had a duplication of chromosome 22, which meant that he could possibly have any number of developmental delays, growth issues, even things on the autism spectrum--the list was endless. So we were told to monitor his development carefully, and that he would be seen regularly by a developmental pediatrician.

Now suddenly, I found myself in the same position again: I now had to watch for those red flags because of this new information. I had to look for the arm flapping or head shaking, the lack of eye contact or smiling, the arching back, the dislike of human touch. Truth is, I would have regardless, because once you have a child with autism, you can't help it. You even subconciously look for it in other people's children.

When he was around 1 year old, he began saying words, and I was so relieved. He wasn't showing any signs of autism. I felt like I could let my guard down a little. But then a few months later, he began to lose some of his words, and even shake his head. I immediately called the early start program, and after an evaluation, he did show some slight delays and began receiving services.

Just as I was starting to cope with the idea that I was now heading down the same path with my youngest child, I took him into a follow-up appointment at the Ear Nose Throat doctor, and she discovered that both of his ear tubes had fallen out. She explained that his loss of language was because he was not hearing properly and that he needed new tubes right away to keep him from losing speech. Two weeks later, the new tubes were placed. I learned that autism is not the only thing that can cause a loss of language.

It's been over a year since that time of worry and confusion. Nathan is a thriving two-year-old, seeing a speech therapist for articulation, but ahead of the game in cognition. He is smart and funny, social and curious. I have absolutely no worries about him at all, other than possible future surgeries. The chromosome duplication, as far as we know, only caused the cleft palate, and nothing more. However, when he does things like lining up waterbottles, I have to wonder, is there just autism in the air at our house?


When your oldest child has autism, it changes the way you parent your younger children. You have to be hypervigilant, watching every move your children make, analyzing every odd behavior. It's always on your mind. Now that my youngest is almost 3, I feel like I can finally move on from that super-observant stage and breathe a huge sigh of relief. We made it! We've had some challenging health issues with our children, and my oldest will still bring us challenges, but we've learned so much from each of them, and have turned a corner as a family. Now time to put away those waterbottles...

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