Saturday, April 2, 2016

Guest Post for World Autism Awareness Day: Derek's Story, by Nicole C.

1. What was your pregnancy and delivery like with your child? Were there any complications?

My pregnancy with Derek was uneventful. It was very similar to my pregnancy with my older son. The only thing that was notable was that he wasn’t as active as his brother. He was born 5 days before his due date via repeat cesarean after a failed induction. The induction wasn’t for any medical reasons. It just so happened that I was due the Monday after Thanksgiving, and my husband’s company was shutting down for the week of Thanksgiving. Vacation days being sparse, we asked the doctor if she would do an elective induction at 39 weeks (the Monday before Thanksgiving) so that my husband could be with me. As much as I tell myself we were doing what was best for our family at that time, I sometimes wish we had waited for him to be ready on his own.

2. When did you start noticing that something wasn't quite right with your child? How did this make you feel?

Derek was a very relaxed baby. The type of baby you would sometimes forget was in the swing or bouncer or laying under that little baby “gym” on the floor. He was quiet, happy, and just seemed to be taking in everything around him. I think having an active older brother who is only 19 months older than him allowed him to settle into that position. Most of his milestones were a little delayed (from a medical perspective), but nothing we weren’t used to, as his older brother didn’t walk or talk until between 18 and 19 months old. We became concerned shortly before his first birthday. He refused to hold his bottle or take a sippy cup. He was unable to feed himself. He raked his food up with his whole hand instead of using the pincher grasp. He wasn’t babbling the same way the kids in my mommy groups were at that age. Around 11 months old I self-referred him to our county’s early intervention program. We were already working with them for our older son, so when I voiced concerns about Derek they offered to do an evaluation.

Early intervention set him up with an occupational therapist and a feeding specialist. His feeding issues quickly became a thing of the past, as we witnessed when he stuffed his face with birthday cake at his 1st birthday party! Soon the feeding specialist was replaced with a speech therapist. He ended up walking around 16 months, but to this day (at almost 3 ½ years old) he is still mostly nonverbal.

3. When did you seek out answers for your child? How did you get them?

Early last summer, when Derek was about 2 ½ years old, I had been reading about sensory processing disorder. He avoided certain foods – fruits, vegetables, and pasta are 3 big ones that he still avoids to this day. He was uncomfortable with walking on different surfaces – it took him awhile to transition from carpet to linoleum; he avoided grass like it was hot lava. He even refused to walk on concrete for some time (even with shoes on). After doing some reading and talking to other parents, I reached out to his occupational therapist. While I had my concerns, she was the first person to flat out express that she thought Derek had autism. Her words exactly – “The thing with sensory integration is that all kids with autism have sensory processing issues but not all kids with sensory processing issues have autism.  For Derek, I see it being the first since he struggles with more than just input such as the social/engagement piece.” I remember feeling like someone had just laid me out on the floor when I read that. As parents we all know what it’s like to question things about our children, but to have someone independently express those concerns – it can be like a punch to the gut. That is when I began to actively pursue a formal evaluation.

4. What is your child's diagnosis? How did having your child receive a diagnosis make you feel as a mother?

Derek’s diagnosis is mild to moderate autism spectrum disorder. It was approximately a month or two wait from the time I scheduled his evaluation to the time he was actually seen. In that time my husband and I did a lot of observing and researching. By the time we received his diagnosis it was pretty much a foregone conclusion in our minds. Which made it easier when the doctor very bluntly told us, “well, let me just tell you, he definitely has autism. No one stims as much as he does and doesn’t have autism.” We knew a diagnosis was the gateway to getting him the help he needs. 

When I let myself be overtaken by everything, then the self-doubt begins. What could I have done differently? Was it something during my pregnancy? Was it the induction? The Pitocin? But I know I can’t be my best for him if I let these questions take over my mind. I have my pity party and move on. I have to be mentally strong to take care of him, advocate for him, and be the best mom I’m capable of being. 

5. What have you learned from your child? What do you want others to know about his/her diagnosis?

Derek has taught me patience and that looks can be deceiving. He may be nonverbal, but he sure knows how to get what he wants! And he’s smart – don’t let him fool you! He has this big, beautiful brain that’s just wired a little differently. For me, he is joy personified. His smile, his giggles, his big blue eyes . . . they give me hope. Hope that he’ll be the best person he’s capable of being, whatever that means for him. Hope for acceptance. Hope that someday he’ll understand just how much his mama loves him.

Derek is now almost 3 ½ years old. In the short time that we’ve been on this autism journey I’ve learned how much the idea of a “spectrum” really suits an autism diagnosis. Every person with this diagnosis is unique. You will never meet two the same. I’ve also come to realize that this isn’t just a learning disability or something that can be taught out of him. There is something truly different about his brain that we may never understand. 

So today, as we raise awareness and acceptance, I want people to open their minds and their hearts. Listen and observe a little more, talk a little less. When you spend time with an autistic person, you can’t expect them to enter your world. Enter THEIR world and I guarantee you, you will be amazed. Don’t pity them, appreciate them and love them for who they are. Don’t expect them to conform to your norms; take immense joy in allowing them to march to their own drummer. You will learn something new—
I know I do every day.

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