Our Autism Odyssey: Post #5: Raising a Neuro-typical Sibling

A Baby

In the summer of 2007, the infamous summer when the neurologist said Jacob had “autistic-like traits,” Dave and I learned that we were expecting...“expecting” a life-changing diagnosis for Jacob, and also “expecting” a new addition to our family. We were in the throes of having Jacob evaluated for autism, and trying to wrap our heads around having another baby all at the same time. While some might think news of another baby might have completely overwhelmed us, it was actually quite the opposite. In the dark and scary autism wilderness, being pregnant gave us a wonderful distraction, and much-needed peace and comfort. It was truly divine timing to be blessed by another baby. Given that over 75% of children diagnosed with autism are boys, I would be lying if I said I wasn’t a little relieved when we learned that we were having a baby girl. Having a girl meant a far greater chance that she would be neuro-typical, and she was! So, in the Spring of 2008 our Audrey arrived; healthy, sweet, and to us…absolutely perfect.

We spent the first two years of Audrey’s life providing for her basic needs: food, clothing, shelter, warmth and love. Age two expanded to exploration, discovery and routine. Age three was a period of significant growth, as Audrey’s personality really developed, and she was learning so much every single day. She will be four years old next month (I can’t believe it!)

Educating Audrey

Dave and I made the decision quickly that we didn’t want to have a “significant talk” with Audrey one day out of the blue about autism. We also didn’t want her to be confused or scared by Jacob's outbursts and tantrums. We wanted her to know about autism up front. First, it was just introducing the word “autism” to her vocabulary, and slowly adjusting a more robust explanation of what it entails to her intellectual capacity. Since she’s only three years old, it’s still very very basic information! This was a conversation she initiated with me a few weeks ago:

“Mommy?” Audrey began.

“Yes baby” I responded.

“Jacob has autism and needs lots of help,” she stated matter-of-factly.

Nodding and smiling in agreement I murmured, “Mmm-hum”

“So, I will help him” she proclaimed. “You. Me. Daddy. We’ll all help him to eat his food and to talk since he doesn’t talk very good.”

“Honey, that’s right.” I said. “It’s very sweet to be looking out for him. Jacob’s VERY lucky to have you… to have all of us, actually.”

“I know Mommy!” she exclaimed.

I try not to say the word “autism” more than I have to because I don’t want autism to define Jacob. If there’s a hurdle he’s experiencing, I will say the word to Audrey so that she understands the root of the situation or issue, but I don’t say it for the sake of it. I also try to follow the explanation by asking if she understands what we’re talking about. I do this for two reasons. First, I hope she’ll eventually learn to say, “What? I don’t get what you’re telling me at all!” Second, I use it as a compass for my own benefit to see if my explanation is on target with her maturity level. My hope is that by the time she is an adolescent she will have a complete understanding of it all. However, I’m laughing as I type this because we are still far from that point. She asked me this morning if Jacob was on Santa’s naughty list because he wasn’t listening!

Stress and Responsibility

I’m keenly aware that Audrey will take on additional stresses and responsibilities. Some stress factors might be:

· Embarrassment around peers

· Frustration over not being able to engage or get a response from Jacob

· Being the target of his aggressive outbursts

· Trying to make up for any deficits Jacob may have

· Concern regarding the stress and grief Dave and I may have that will be transparent to her

· Concern over what her role will be in future caregiving

The only things that Dave and I can do are to pray, position ourselves as the filters, and try to defuse and minimize the issues before they get to her. Raising Audrey to be a mighty woman of God is likely the only sure way she will be equipped to cope gracefully.

Billy Graham once said, “A child needs both to be hugged and unhugged. The hug lets her know she is valuable. The unhug lets her know that she is viable. If you’re always shoving your child away, they will cling to you for love. If you’re always holding them closer, they will cling to you for fear.”

Forming the Bond

Siblings naturally want to interact with each other, and Audrey is no different. However, autism often prohibits Jacob from utilizing age-appropriate communication and social skills, as well as coping skills. Despite this, I’ve been really impressed by Audrey’s compassion for Jacob. She takes Jacob's vitamin to him each morning, goes to the pantry to get a cup and fill it with water from the fridge if she thinks he’s thirsty, and runs to his room to get his Crocs if she notices we are ready to head out the door. She’s a tremendous helper. They sometimes argue over toys, and if Jacob gets too upset, Audrey will give in. She hates seeing Jacob sad. This morning she started crying after we dropped Jacob off at school. She told me she was sad because he didn’t kiss her goodbye. She has tremendous love for her brother.

Even at her young age, she handles herself very well when Jacob ignores her, and she knows what types of things may trigger him to have an outburst. I don’t like speaking for Dave since this blog is voiced from my perspective, but I think what saddens him the most is when we have to ask Audrey to quit singing. For whatever reason, when she sings or hums, Jacob goes crazy. He yells out relentlessly until we eventually have to ask Audrey to stop. Can you imagine telling a three year old not to sing? It’s heartbreaking. Other issues come with discipline. We have two very different systems for disciplining them. Jacob is rewarded for standing within the vicinity of the kitchen table to eat, while Audrey is reprimanded for getting out of her chair. We have to remind ourselves to consistently reiterate to Audrey what we expect of her and the unique challenges that Jacob faces. This parenting gig is really hard sometimes.

Special Times for Audrey

Our goal for both of our kids each and every day is simple – to reach their maximum potential. A lot is expected of Audrey, not because of our family’s situation, but because she is kind, smart, compassionate, curious, creative, and so many other wonderful things. This past year I have learned how crucial it is for Audrey to have her own activities, opportunities for success and creative outlets of her own. We initially placed Audrey into a twice weekly Mother’s Day Out program last year to expose her to other children her age. I struggle with whether she would benefit from attending additional days, but it’s the other three days in the week, the “Audrey days,” that I’m not ready to give up yet.

“Audrey days” are the days when she can sing as loud as she wants to in the house. It means we can bake cookies that no one else may want to eat, or get books at the library that no one else may want to read. It means abandoning our chores every once in a while to try new playgrounds, go shopping, or make a homemade birthday card for a family member. She’ll say, “swing me high in the yellow swing please!” which means that we can do it for as long as either of us wants to without interruption. They are the days where she throws on her swimsuit cover-up, tutu and pink cowboy boots and proclaims, “this makes me feel beautiful!”

Our time together is priceless, and on “Audrey days” she has me all to herself, and to a three (almost four) year old, that’s priceless. There’s no doubt in her mind that she’s loved abundantly. No doubt.

Additionally I’ve come to realize (only recently actually) just how rewarding decision-making is to a three year old. This sweet child of mine can’t stop talking about her upcoming birthday! Several times a day she asks if it’s her birthday tomorrow. So, this morning, I asked her if she wanted to do a little project. She helped me get out the scissors, stapler and some paper. I let her decide which colors of paper she wanted. We sat on the couch together, and made a paper chain birthday countdown. Having the authority to assist, and then seeing the result on her bedroom wall, brought tremendous value to her J

Proverbs 22:6

Start children off on the way they should go, and even when they are old they will not turn from it.

Family Activities

Doing things with just Audrey is important, just as having “Jacob days” is important too. We have eventually learned that there’s fun things we can do together as a family…even with the age gap…even with autism…even without being able to go out to eat or go to a movie theater. Actually, our last 48 hours are a representation of that! We painted in the backyard, went to church, went on a walk, baked bunny-shaped cookies, watched movies at home, ran errands together, etc. We are treasuring our time together.

The joy my children bring, and everything they are, led me to the final stage of grief…acceptance. I have accepted autism as part of our lives, and can even appreciate the suffering of the wilderness. I thought I was patient, understanding, mindful, compassionate and faithful before autism, but I was wrong. I’m so grateful that God has had me under construction these last few years.

Romans 5:3-5

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

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