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Why I Write About My Son’s Autism

When my son was first diagnosed with autism, I was sure the diagnosis alone would give us options and resources.

Prior to diagnosis, he was often dismissed and so was I.

For years I heard – He needs more discipline. Just make him wear shoes. He’ll get over it. He needs to work harder, do better, stop acting out. He has behavioral issues. He has a demon. And so many other accusations.

For years I was told –  You need to discipline him more. You are too soft on him. You shouldn’t let him do that. You can’t give in to him.  And so many other admonishments.

So when he was diagnosed, I thought help was on the way. I thought it would give us referrals to experts that would help ease the most intense aspects of his life. The daily meltdowns and the pain he experienced from sensory input were so intense. He was miserable all the time. And so was I.

The truth is, we got the diagnosis, and then we went home.

Everything was exactly the same.

Moreover, although we would eventually find wonderful resources and options that would ease my son’s pain, it became clear that if my son was going to have any shot at relief, it was on me to find it.

I started blogging a year later.

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The decision to start this blog was a decision I did not take lightly. My husband and I prayed about it. We talked about how to best protect my son’s privacy, and if that was even really possible. We worried about what he would think in the future, as an adult reading my words.

And in the end, we decided to do it.

We decided to do it because that first year post diagnosis was a very lonely time. I honestly believed my son was the only one experiencing the extremes of sensory overload and meltdowns. I believed it, and I parented him from that belief.

I could not find a resource that spoke to what to do, and how to do it, when it came to the day-to-day care that my son desperately needed.

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Not The Former Things was, and is, a way to encourage other moms (and dads), who are trying to figure this thing out. I do share parts of my son’s life, including autism, but not exclusively autism. I share parts of his brother’s life. I share parts of my marriage. I share the most honest things that I can – because that is what I needed to read post-diagnosis. I needed reality. I needed day in and day out. I needed help.

As the blog has grown, I have had to repeatedly protect my son’s privacy. Several times, I have turned down opportunities that would’ve brought national attention, but also would have required me to share more than I thought wise in protecting my son.

I am not sure that I am doing this well, but I am trying.

Lately, there has been a growing controversy around whether or not a parent should be blogging at all about their child’s autism (or any other diagnosis).  This controversy has harsh undertones, and there is a ton of passion on both sides of the debate.

I have felt the sting of it here.

“You are using him for your own gain.”

“It is horrible to see the way you are exploiting your child.”

“You are not a hero. You make me sick.”

…..and so many more comments from genuinely concerned people, angry that I am making this choice to publicly share something that ultimately is not my own.

Autism is not mine. It is 100% my son’s.

Parenting and loving a child with autism however, is 100% mine.

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Ultimately, I write about my son’s autism because it matters. I am not ashamed of him in any way. I am not trying to co-opt his experience and make it my own.

I write because when I do, I find more and more people who help, who say, “Me too,” who pray for him, and encourage me to be a better mom. I write because every day, I get an email or a message from a mom on the edge, who doesn’t know how to take the next step and the next.

I write because through writing, I meet adults with autism, willing to share their perspective and experience. Through them and their gracious hearts, I am learning more about my son – what to look for, how to help him, what he might be experiencing. They caution me about using language that might someday offend him. They encourage me when they see me doing something helpful. They calm me down and say, “It’s totally a part of this. It’s OK to just let him do it. Don’t worry. He will be fine.”

At the end of the day, writing about my son’s autism helps me be a better mom to him.

And that is reason enough.


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12 Comments

  1. Thank you for your blog and for sharing. You share aspects of your life in such a respectful manner that I can’t imagine others taking offense. While it may be his autism, it does affect the entire family, is a huge part of your life, and impacts every experience you and your family have together. Sensory issues, ADHD, autism-all of it… No concrete answers, so many variables, so many unanswered questions. As a parent it’s nice to have different resources as conventional medicine does not have very many. Thank you for painting a real picture of how difficult it can be.

  2. I wish there was a button I could hit to say I like this. So many things you have written I truly am glad I have read but I don’t want to comment, “This rocks!” every single time. I too write a blog about the struggles my boys deal with on a daily bases, among other things, and never once had the idea that people would slam me because of it. I am no where as followed as you are but I do it for the same reasons. I used to believe I was alone.

    When I started speaking up about what we go through every day, slowly, privately, other people started to share with me they do too. I was mad. Inside I felt like…and you made me have to figure this out on my own? How selfish. So I share. And others share. And I learn and I grow. And I’m not the only one who benefits. My kids do too. So I want to encourage you! These people who are so quickly to judge, have no idea what they are talking about.

    You, my girlfriend, are a rockstar! And your kids are SUPER HEROS! They have super powers other kids don’t have. And I know your husband is amazing, because I got one of those too! So write on! Don’t let anyone take your awesomeness away! Your kids depend on it!

  3. Growing up with an autistic brother I used to call them learned about “people who don’t understand”. Some were mean and others indifferent. There were many sad days.

  4. This is a long and lonely road we walk. We need each other. We need to know that there are others who walk it too. We’ve been doing it for over 18 years and just found that in addition to ADHD, sensory issues, PDD- NOS, Emotionally disturbed, Major Depressive Disorder, our 18 year old daughter has Borderline Personality Disorder. This is a particularly insidious mental illness in that DBT therapy is the only thing that helps, but the very nature of the illness makes it almost impossible for the individual to buy into the therapy. Add the ASD diagnoses…well, God knows. That’s all I can say from my burdened heart. Keep on writing. We need you!

  5. There are always going to be haters. Haters gonna hate, right? You aren’t doing anything despicable like keeping your child ill for your own benefit.
    That said, your blog helps me understand what my parents go through having a child with disabilities. Please keep it up.

  6. *PLEASE* don’t listen to naysayers! I read your blog because I have a good friend with an autistic son. I need to know what she’s up against.

    For me, I’m so grateful for your blog!

  7. Thank you for writing. I am one of the moms who has felt alone, looked high and low for support and keeps coming up short, since most groups focus and work with either homeschooling OR autism, but it is a rare and glorious calling to mother & homeschool a family which includes a special needs child/children. Thank you again for your raw, clear, from the heart posts. They have helped me – and our whole family – immensely.

  8. I can not imagine that anyone would say such horrible things! Like sharing your very most personal experiences and feelings especially when they aren’t all rosy would be for your gain. That doesn’t even make sense! I’ve been sharing your blog with moms I know parenting and schooling children with special needs. My own special needs kid (Downs) is relatively easy now that the hard part is past us – lots of sickness and hospitalizations and open heart surgery. Even that was nothing compared with what you live everyday. You are a blessing, Shawna. People do need you/this. God bless!

  9. Thanks so much for your sharing. I’m an elementary teacher in HK and I need to work with children with mild symptoms of autism every day and I love them. I think it is very wise and courageous of you to share your situation. I pray that the presence of God be with you, your son and your family every day that you can feel His tremendous love and miraculous restoration.

  10. Your blog seriously makes me feel like I might not be the worst mom ever, or my son the worst ever. He is diagnosed with ADHD but there is something more there. I just can’t get other people to see it. The judgemental attitudes of other people, the despair when they are melting down again, and you don’t know how to calm them down, the grief and guilt they face after the meltdown, that lets you know they really do want to stop—- I see all these things that have been our family’s private despair echoed here so that I know I am not alone and neither is he and we just have to keep trying to see what we can do to help him. Please don’t stop writing this blog– we leave way out in the boonies and for a variety of legal reasons CAN NOT get to a big city where we might be able to get better support, better doctors, better resources. Your blog is the one I have been reading more and more lately as I try to figure out how to help my son. If other people condemn you for it, please don’t let that shut you down– those of us out there who need to hear your words know it is about reaching out, not exploitation. Thank you for this lifeline of hope.

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