Proud RCM Father Brags (Just a Little)
You know that feeling you get when you kid hits a home run, or makes an A on a really hard test, or is simply kind to someone without having to be reminded to be so? That’s a feeling that I have nearly every day, and yes, I know how lucky I am.
Being the big sister to a special needs little brother isn’t easy. Especially when you’re only 19 months bigger. I’ve lost count of the number of times that my girl has willingly walked out of a movie that she wanted to see, a restaurant where she wanted to eat, or left the library, a park, the pool or a play area before she was ready because her little brother was having a meltdown from sensory overload.
Suffice it to say, it happens at least on a weekly basis. Only rarely does she complain or whine. (She is only eight years old, after all.) But since about the time she was four, she just gets it. She understands.
In fact, it was when she was about four that she first asked, “When is Matthew going to talk to me?” She knew that she had been talking since before she turned one, and she was ready to just talk to her little brother. But he wasn’t. And she didn’t understand. And so we had our first conversation about autism with our little girl. She listened for a moment, and said, “So, we’ll just have to teach him how to talk.”
And she has never given up on him.
She remains his most persistent teacher. She celebrates his every utterance, syllable, attempt, word, and sentence as if it were his first one. Being on the spectrum requires a lot of a family. A willingness to suffer fools with a smile, knowing that someday that ancient smokestack of a woman outside Publix will realize that her “helpful” suggestion of greater discipline for a boy having a meltdown may have been one of the most hate-filled and evil statements she has ever made.
A willingness to just walk away from the hatred that some feel towards those who are different.
A willingness to walk out of the movie because the music stopped playing at just the wrong time.
A willingness to listen and celebrate what others assume are a given because we know that nothing is actually a given in this life.
Being on the spectrum requires love. Unconditional, undying love, as the love of a sister for her little brother. That’s what my girl’s film captures: her open, willing embrace of diversity, of finding a way to play, of finding hope to continue listening, watching, and celebrating each incremental gain.
And constantly fighting to find another.
This is who my daughter is; not because of anything that I have done, she simply came to us this way. And we cannot believe how lucky we are. Emma’s PTA Reflections video on Diversity has won First Place in her age division (Primary) for Film Production at the State level. As such, her video has been submitted at the national level competition as well. You know that feeling that you get when your kid is kind without being reminded to be so?
Yeah, I know that feeling too. I have it everyday from both my kids.
Dad, hubby and irritator of students and school boards alike, Russell Winn is committed to ensuring that the Huntsville City Schools provide access to the educational support system for every student. When he's not enforcing grammar rules or arguing the ethical minutia of Kant's deontology, he spends his time loving his kids, reading anything by Stephen King or Christopher Moore, and attempting to speak truth to power on behalf of special needs kids. You may follow his rants at www.geekpalaver.com or on twitter at @russwinn.
Thank you so much for writing this piece. My youngest son was diagnosed with autism just two weeks ago. I think as a family we are all still just in a state of shock. But one of the things we have already encountered is the very scenario you have described. My oldest son has adapted without question to the many activities we have had to cut short because of a meltdown from my youngest. There is typically no complaining or fuss. Just an understanding that this is the way it has to be. As a family we are still so new to Autism that we don’t now how to approach some of these very important topics with our older son. One thing I do know is that there is a true love between them, and they just “get it” because there are no words spoken. Thank you again, your piece really touched my heart and made me aware that there are others that have the same struggles that we do
Melissa,
Thanks. We felt similarly overwhelmed when Matthew was diagnosed at 2.5. To borrow a phrase from the anti-bullying campaign, it get’s better. It really does.
And no, you’re not alone. Take a look at Making Connections. There is a ton of support in this area for families on the spectrum. https://www.makingconnectionsasd.com/Making_Connections/Home.html
Also, you might consider attending the Autism Walk this Saturday from 8:30-12 at Hampton Cove Middle School. You’ll see first hand just how not alone you are there.
Thanks for reading.
Russell
You know that feeling that you get when your kid is kind without being reminded to be so? Yeah, I know that feeling, too. And I get that feeling when he’s strong and when he’s determined, and when he irritates the comfortable and the small-minded and the malefactors, and when he never gives up pursuing what’s right for individuals and for the whole human community. God love you, Russell. I do, too.
Thanks Aunt Pat. I know that you know what this is like!
What a compassionate, kind, sweet big sister! Kudos for having great kids Russ – she may have come to you that way, but you are nurturing and encouraging her every day to grow that part of her. Now I need some Kleenex…
Thanks Stephenie. She’s awesome. Thanks for giving me a chance to write about her.
Your daughter is truly a magnificent person, already at the age of 8. You have much to be proud of, and her compassion is amazing. I bet she ends up making a big difference in the world with her smarts and her caring.
Thanks Rhonda, and thanks again for all you do to help and support autism families here in Huntsville.
I’m sure she will too; in fact, she already has.
Thanks for sharing Mr. Winn. I know you must be so proud. Emma is obviously a patient and adoring big sister who takes her role very seriously. Kudos to you and your wife for raising amazing kids.
Thanks for taking the time to watch it and for all the well wishes this morning!