Autism Awareness Day: A Mom’s Personal Journey

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When Sarah initially asked me to write a blog post about autism, I said “yes”; but to be honest, I was very hesitant to actually follow through. I prayed about it, and discussed it with my husband, and we agreed that I have a lot to say on the matter, and I actually want to say it.

My five year old daughter, Austyn has autism, which we have kept fairly quiet about until now. Here are a few questions, and my honest answers to those questions.

1. How did you learn your child was on the autism spectrum? 

When Austyn was 1, she was starting to talk and could say words like “banana”. After a few months she just stopped and wouldn’t speak, no matter how hard we tried . She really didn’t speak much until she turned 3&1/2, and even then it was a rarity. Around her third birthday we noticed she started having emotional outbursts, and throwing some major tantrums. When she was four we had her evaluated by the school district in order to get her into preschool and receive speech therapy services. It was then that they diagnosed her with autism. To learn more about Autism, visit www.autismspeaks.org

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2. What were your initial thoughts/feelings when you learned of her diagnosis?

To be honest, I didn’t see it coming, and it was a tough pill to swallow. I felt like I had failed her somehow. Maybe I didn’t take the right prenatal vitamins when I was pregnant with her, or maybe we accidentally exposed her to something that brought this on. As the parent, you always feel responsible. Thankfully the period of sorrow was very short lived. Life does, and must go on. And the diagnosis could always be far, far worse then this. We chose to be thankful it was only autism.

 3. What was the hardest part for you in all of this?

The most difficult aspect of having a special needs child (regardless of the diagnosis), is the judgment and condemnation you receive from others. I have heard everything from “I’m so sorry you have to deal with this” to “well that sucks for you” (<—That person regretted that one…) . Even the sincere comments, although said with good intentions, are upsetting to me. My husband and I made the decision to not let this define our family. To not let it rule our lives. And especially, to not feel sorry for ourselves for being given a child with autism. So when someone gets that look of pity in their eyes, or that look of disgust because she’s losing her cool in public; that is what is most difficult.

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4.What would you like others to know about autism?

There are many forms of autism, many much more serious then my daughter. But I know of many cases where having autism does not mean they do not get to lead a healthy, fulfilling, happy life. Our daughter will most likely be able to go to college, have a career of some sort, live on her own, make friends, and be genuinely happy. And even if she doesn’t get to do any of those things, it’s ok. The other thing I’d like people to know is that just because a child or adult looks completely average, does not mean they don’t struggle with some form of disability. Don’t be so quick to judge a person or parent of a child who can’t seems to control themselves or their child. You literally have no clue what’s really going on. I am that parent. Know that we are doing our best, but many situations are new to us, and we are learning as we go, so your looks and comments only bring discouragement and hurt to a parent who might already feel alone in this process. A quick smile or encouraging comment will have a much greater effect then you know.

5. How has this changed your outlook as a mother?

I have learned SO much about unconditional love and patience. I have had people say “I don’t know how you do it” and “I’d die if my kids were that close in age” (Those statements have been made probably thousands of times, between Austyns diagnosis, and the fact that we had three kids within 3&1/2 years of each other). The honest truth is; you do what you have to do. In the process of doing what I have to do, I have learned just how much I love my daughter (and her two older brothers). I have learned that I will fiercely defend her and protect her from abnormally cruel people. I have also learned how to be more patient. Life would be so much more frustrating, and there would be far less joy if I didn’t learn to be more patient. Do I lose my patience sometimes? I have three kids; what do you think.. I’m no saint, but because of this journey we are on, I have learned to just roll with it, and not sweat the things that used to get me riled up. It’s actually really nice…

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6. How does autism effect your everyday life?

I’d be lying if I said life with an autistic child was as “normal” as with any other child. We do have to make adjustments to our routine to avoid potential issues. We have to work around her and her mood at times. There are places we do not go, because we have noticed that for some reason they trigger a tantrum or are overwhelming for her and she struggles to keep it together (ie, Nordstrom Rack for some reason is too much for her), or she doesn’t have the attention span (ie the movie theater). Austyn does require us to make a lot of decisions based on how we think she will handle it, however, these decisions typically make for much smoother sailing in our day to day life, making those decisions very worth it for our family.

7. What joys and beautiful experiences have you seen from this?

Every accomplishment, every new experience, everything that makes her laugh, every treat, every hug and kiss….they bring more joy then I could even describe (apparently I can’t even write about it without getting misty eyed..).  Her most recent thing that just melts my heart, is this: When I go lay down to rest for a bit (I am pregnant with baby #4- yay!), Austyn will come to the door, knock, and ask “Do you wanna build a snowmaaaaaaan?” (from the movie Frozen). Ugh….she’s so dang cute…. Another thing that brings joy to my heart, and really is just beautiful to me, is to see other people interact with her, and to see them laugh and play with her, investing love and time into making her happy (crying again!). When they’re able to see past her speech delay, occasional tantrums (aka autism), and see her for who she really is deep down, that makes this mama so proud and happy for my favorite girl!

Autism gives my daughter a unique perspective and outlook on life. Something I would never get to experience if it weren’t for her condition. At such a young age, she already nurtures and cares for those around her. Austyn is hilarious. She loves to laugh. She LOVES music and to dance and sing. Austyn doesn’t care what other people think of her; something so many people wish they could say. This girl brings so much joy to our lives, and to the lives of those around us.

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8. What would you say to a parent who’s child has recently been diagnosed with autism?

Don’t become the victim. Choose to be strong and whole for your child. Don’t apologize for your childs disability. There is nothing “wrong” with them. They are uniquely made, and are as wonderful and special as every other child out there.

Get involved with other parents of kids with special needs. They don’t have to share the same diagnosis. I have become friends with two other moms of children with different needs, who’s children are in the same kindergarten class as Austyn. I cannot tell you how nice it is to have them in my life. As much as I wish their kids did not suffer from the conditions they do, I am so thankful to have friends who truly understand what our family goes through, without even the slightest bit of judgement or condemnation. They are truly a blessing to me.

Additional note: 

I am very happy to add that since starting preschool under two years ago, and thanks to teachers and aids who are well educated in the area of special needs children, Austyn has made more progress with her speech and behavior management then we imagined! She has a teacher and group of aids at her elementary school now that is nothing short of amazing. She can now speak in sentences and communicates so much better then at the beginning of the school year! Her behavior has improved by leaps and bounds. Her teacher has gone as far as saying that she is the biggest transformation he’s ever had. My husband and I will brace ourselves for a meltdown (because those particular words or circumstances have always brought one on), to find her respond with understanding and acceptance. It is so encouraging and motivating to see her make so much progress in such a short amount of time. It truly makes me so excited and hopeful for her future progress and potential. She really is my favorite girl ever.

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