For the record, this is my first blog post, and I’m scared to death. I grew up being a completely open book (often engaging in embarrassingly TMI conversations & behavior), and then, was burned enough times to turn inward and I became quite introverted with my thoughts – confiding only in Daniel.
And now, for some reason, I feel the time is right to open back up a little and start sharing some thoughts and feelings about being an Autism mom of 3 with others. Anyways, my wish is for this blog to end up serving a greater purpose than a personal therapeutic outlet. I hope it helps others gain insight into what it’s like to be a special needs parent, which I hope will encourage empathy (not sympathy, mind you….) and awareness for those with disabilities and for those who love and care for them.
This post is about the day I told Gabriel he had Autism.
Gabriel is 12 now, and has been asking pretty insightful, self-examining questions for awhile (i.e. “Mommy, why do I have a shadow teacher?”). Daniel and I have tried to be honest without going too deep, and have given him answers such as “You just need a little more help with school, Gabriel.”
However, as a very strong advocate for children being self-aware of their own learning needs so that they can self-advocate, I started feeling like a hypocrite and realized that he’s becoming mature enough to know the truth. So I needed to tell him he had Autism – I just didn’t know how. All my mommy training and educational training – every ounce of knowledge I have – would evaporate from my brain when I would try to come up with a plan to tell him. I became an expert at task avoidance, and just when I’d get up the courage to have “the talk,” I’d find other tasks that were screaming to be done, such as organizing my sock drawer.
I just didn’t want him to feel bad about himself afterwards. Whenever I talk about really horrible people (i.e. Adolf Hitler) with Gabriel, the metaphor I always use is that his “brain was sick,” and the LAST thing in the world that I wanted was for Gabriel to think was that his own brain was “sick.”
So when I told him, I didn’t have a plan, but the moment felt right. I’m a teacher, and happened upon a teachable moment. I’d liked for Daniel to have been there, but for some reason, Gabriel has an easier time opening up to me (and females in general), and again, the moment felt right. I knew Daniel trusted me with things like this, so this was one of those, “You go on honey, I got this” moments that married couples have with each other.
Gabriel loves to ask me questions over and over again (attention-seeking behavior, of course), and I’ve tried to, repeatedly, politely impress upon him that asking the same question to which he already knows the answer is not necessary.
So as per usual, one day this past August, he came up and asked me a question he’s asked probably 25+ times: “Mommy, what’s your favorite Seven Wonders of the World structure?” I answered, “The Taj Mahal.” (And for the record, I don’t really have one favorite structure, but I just chose the Taj Mahal since that’s where Daniel proposed to me. 🙂
But, I used this opportunity to follow up and ask him, “Gabriel, do you know why you sometimes repeat your questions?” He sat there a second, thought about it, shook his head and said, “I don’t know.”
So I said, “Well, some people have something inside their brains that makes them want to repeat things. It’s not a bad something, but it’s a difference. A brain difference. And lots of people have this difference. You know Dan Aykroyd? He has this brain difference too.” (AND, I’m proud to say that THIS part I planned, as Gabriel LOVES this guy – he’s a HUGE 80’s Ghostbusters fan – so I’d hoped to capitalize on his positive feelings for Mr. Aykroyd to soften the information delivery, so to speak.)
I continued, “This brain difference also sometimes causes people to have to work really hard to learn to talk, kind of like how Samuel and Noah are both learning to talk, but it’s difficult for them. This brain difference also sometimes causes people to shake, like Noah does.” (I’m referring now to the physical stemming in which Noah often engages – shaking a string in front of his face – so we call it “shaking” with the boys).
“This brain difference is called Autism. Noah and Samuel both have this difference.”
And before I even finished that last sentence, he already had the question out of his mouth: “Do I have Autism too?”
His eye contact with me is often sporadic – but at this moment, his eyes were deadlocked with mine. I felt like he was looking through my eyes and into my soul. It was a look I’d never seen before.
I returned the look with all the love I could possibly project through my eyes, and I said, “Yes.”
He didn’t move. He seemed to sit there and study my face. Time felt like it was standing still. So I just kept talking.
“And it’s totally OK, Gabriel. It’s not a bad thing. It doesn’t change who you are, but it’s something you need to know so that we can think about it, and talk about it, and we can work on how to help you deal with it when you feel the urge to repeat things.”
He sat there and listened quietly. Then we both went silent for a second while I held my breath and waited for him to respond.
Then he quietly asked, “So, Dan Aykroyd is autism too?” I relaxed a bit and said, “Yes, and look at him! Look at how cool he is! Look at what he’s done. He’s a world-famous actor! You can do anything you want to do Gabriel, and so can your little brothers. You’re not alone. We’re all going to work together to help you and your brothers learn about Autism. Daddy and I are going to be right here to help you.”
He sat there another second and then, visibly, relaxed a little physically. He seemed satisfied. He seemed OK. He slowly nodded his head and said, “OK,” grabbed his iPad, and started playing a game.
So the conversation ended. And he DIDN’T ask if his brain was sick.
I got up, walked out of the room, took one of the deepest breaths of relief in my life, and whispered, “Thank you, God.”
9 thoughts on ““Please God, don’t let him think his brain is sick.””
Thank God! Thank you for sharing these moments in your life. I pray that God will give you and Daniel more strength and courage – Godblessyoumorex3💟
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Thank you so much, Lea. Prayers are always very appreciated. God bless and your sweet family as well. xo
Good for you, Roslyn!! What a blessing this blog will be for other parents who are in the same place as you, trying to find the courage and words to tell their little one about their brain difference!! I look forward to following your blog..and even though my own children don’t have autism, being a teacher in public schools, I have had kiddos in my class who have had all different severities of autism. Thank you for speaking out on this subject and your experiences!
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Thanks Jenni. Very true – as teachers, we have/will all encounter children with “brain differences” of all kinds. The more we can share our experiences and ideas, I hope the more aware and prepared we will all be to help them.
What a wonderful story. I think this blog is a wonderful idea. I hope it helps other parents and maybe even special education teachers were you all can talk and share your feelings and ways to help one another. You are right, the kids with Autism can be whatever they want to be. They just need loving, patient and supporting parents like yourself and Daniel. Also teachers that believe in them and don’t give up. I will look forward to reading your blog posts. God Bless you and your family.
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Thanks so much, Theresa. Daniel and I both appreciate your kind words and thoughts. I sincerely hope to raise a little awareness and break down some stereotypes that people might have of children/people with Autism. The more we get it out there, hopefully the more we can de-stigmatize Autism. Wishing you guys all the best.
The only thing I wanted to do after reading your posts was to hug you. You truly are a strong and determined mother with all the love in the world for her children. You made me feel the love through your words and I just wanted to applaud you for that. Best of luck!
Roslyn, you are such an amazing and wonderful mom. And Gabriel is such an awesome young man, I absolutely adore him! I can’t tell you how many times my heart stopped and how many tears I shed while reading this blog, hoping that he took the news okay (thanks God it went well). Gabriel, Samuel, and Noah are so lucky to have you. I know in my heart, all three of them are going to be okay because they have you and Daniel there to support them every step of the way. Your blogs have touched me so deeply and I’m sure they will be a huge inspiration to so many people. God bless you and your beautiful family XOXO
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You are doing it!!!! Well done, Roslyn. So happy that you are getting your story out there.
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