Thursday, December 31, 2015

Not That Kind of Autism

My news feed is often flooded with news articles on autism. 90% of the articles talk about how this kid or adult can now speak and is graduating college, or working at xyz or has some miraculous recovery or speaks about their own autism or stands for the autistic movement and are proud of their neurodiversity (and has every right to be proud- I'm happy for them and the way they stand up for themselves and how they feel). I am proud of all these kids and adults. But it's not our son. It's not the kinds of things we get to celebrate. Don't get me wrong- we celebrate a HELL OF A LOT of things, but it's not those things. It's not that kind of autism that he has.

We work hard for every step Kreed takes. Sometimes he fights against new skills and we work harder. He fought against a communication device and raged and cried and hit and kicked and bit. Until the night he finally realized it helped him communicate. Now it's been a slow process to teach him language is more than requests. Some days he has clarity we've never seen and other days he refuses to communicate at all.

He's not a kid who magically learned to type and held it in all these years. I wish. And we have tried. But it isn't in the cards for Kreed. His combination of medical conditions make using his hands incredibly difficult and painful. His only method of communication is also painful for him due to his neuropathy. We will never have a speaking miracle because the nerves involved in speaking have been damaged for years. Every step Kreed takes is literally painful for him. And he's locked inside his head unable to fully communicate everything he is thinking and feeling and at times refuses too even when given the tools to do so.
So we fight and he rages and we continue to work to get him to communicate and be present with us. Some days his medical conditions make it too painful to even get out of bed. Those days we feel so disconnected from him. I miss the days of health he used to have even when he drove us crazy. Watching his body work against him is heart breaking and watching him in so much pain is even worse. But still, we work and help him gain skills. I hand him his clothes to put on, he throws them back. I hand them again and he puts them on. I tell him clothes go in the hamper and to learn to do the laundry. We work hard to give him his independence. He doesn't always want it, but in the end we know it's important and he always feels better when he learns to do things for himself.

We don't do what's easy for Kreed. We do what's necessary for Kreed.

The kind of autism Kreed has doesn't lend itself to celebrate his neurodiversity. In moments of clarity Kreed talks about his autism and is angry. It stripped him of his ability to speak and his ability to be independent. Which is why we work so hard to make him communicate and teach him independence. As much as he will hate it at times and not want to do anything, in the end, it is his goal, as well as ours.

And we celebrate. We celebrate every conversation we have with him. Every new step toward independence. Every moment he smiles with his amazing dimples. Every new phrase he learns or new communication attempt. Or if he learns to talk about his medical conditions. When he learns to play new games. We celebrate if he's happy. That's the end goal. That Kreed is happy in his life. That he finds his own path and is happy in his life. His body is riddled with pain and his mind gets clouded by all his medical conditions and he can't always find his way out. So we celebrate low pain days or no pain days. Or days he is truly with us. Those are the things we celebrate. It may not be super miraculous to other people or headline news worthy, but it's amazing to us. It's amazing to him. We are so proud of our boy for all he has accomplished despite 10 equally debilitating medical conditions. When we hear others with similar medical conditions but can speak about it, most say they don't even know how they get out of bed every day. And Kreed does. Every. Single. Day. And he fights againt the pain and fights for his life. Every. Single Day.

People want acceptance and awareness but so often there isn't much acceptance or awareness of those that remain nonverbal and can have extreme behaviors at times. Kreed stands for those kids and adults. We never stop helping Kreed find his way, no matter how many times he hits, kicks or destroys things due to frustration and pain. He deserves to have the best life possible and deserves for us to never stop trying to help him and help him find his way from the pain and the brain fog and to continue to teach him so he can better communicate and be independent. True acceptance and awareness means acknowledging that kids like Kreed exist who won't make the headlines  and live a very hard life full of uncertainty and lack of awareness, communication and independence. And realizing that we must fight to teach them those things.

At the end of the day though, we celebrate Kreed. All his uniqueness. His humor. His unconditional love. His friendship. His communication and drive toward independence. We celebrate Kreed. For exactly who he is and what he has accomplished. Kreed doesn't have that kind of autism most people read about, but what he does despite the odds against him is amazing and he does stand for hope for others with his kind of autism.


  1. I just finished reading this Blog Post and you "Letters To Kreed" and can't hold back the tears. We hear so much about bullying individuals with disabilities to teachers emotionally hurting students with Autism.

    I am one who agrees with you that we should celebrate the accomplishments and reward them with love and nit always with materialistic items. When you are advocating for Kreed there are people who are so mean and claim Autism is a made up disability.

    Your Letters to Kreed affirmed why I have so much love and compassion for families who raise a son or daughter with a disability. I hope to research more about the field of AAC.

    I could sit here all night responding to your eloquently written Blog. You are blessed to raise Kreed and I'm sure he feels blessed to have you.

    Please know that I understand why you are sharing this with the Social Media community is to bring awareness and help others in similar situations.

    Please feel free to e-mail me at

    With Gratitude,
    Illy(AAC Kafe)

  2. I love your vlog!! I only have aspergers and want to be an autism advocate like temple grandin. I work at an aba clinic. Kreed is so inspiring!! Tell h he's my hero!

  3. My son is 19 with severe Autism and is nonverbal.
    He too has had rages.
    He has developmental delays - he's always had developmental delays and speech delays. He didn't regress as a child.
    He had Early Intervention at age one and was diagnosed at 21 months with classic Autism.
    We've always worked on communication because he understands more than he can tell others.
    In 2014, he had a hospital stay for mood instability and my son regressed like I've never seen. We are still working to get him back on track.
    We had to start over with many skills that he had had for many years.
    During school breaks, my son would regress some, but he'd get back on track within two weeks of being back in school.
    So, 2014 was a very difficult year on him and we still have some difficult days.
    I'm thankful that we've helped him be able to walk up and down stairs again, use a cup again, use a fork and spoon again.
    There's so many changes with the services for 18-21 and he has the Comprehensive Care Waiver as we weren't sure he would be able to keep living at home.
    We have been able to keep him living at home and use the Family Caregiver Act in order to be his Family Caregivers/Host Home Providers in our own home through Discover Goodwill.

    I thankful that you have shared Kreed's story because I know that our family is not alone.
    Nonverbal Autism is hard on us, but I know it's harder on my son because he's the one who struggles to try to get others to understand.