Monday, September 28, 2015

We were "that family"

Yes our son has what most people would call severe autism. 

And yes we continually expose him to new experiences no matter the outcome. Some people actually ask us why, when we know it might be incredibly difficult. Or people stare. Or it might upset other people. 

And then some people see Kreed now and can't imagine what it took for us to get here. I will tell you: blood, bruises, heartache, tears and sweat. It was not easy to teach Kreed to maneuver in the world around him. While I wish I could change the world for him I can't. I can only teach him how to navigate the world so he can cope within it and find his own peace and joy with the paths he chooses. 
Kreed five years ago in public: strapped in an oversize car seat, nothing in his reach, not even shoes. Why? Because he takes them off and chucks them at your head...or keys. Like the time it hit the keys and turned the car off, while driving on the freeway. It's that kind of crazy scary things. If he wasn't super buckled in, he would attack you and get out of his seat and pull your hair or hit you. 

Once out of the car he basically just took off running. Parking lot. Store. Didn't matter. See ya. 

Or if you didn't take him where he wanted to go, punching, kicking, a full meltdown would ensue. He was "one of those kids" in a shopping cart passed age just to get any kind go shopping done period because there was no other option. We were "that family" that other people judged because he screamed, hit or would take off running down the aisle and we would after him, often losing shoes in the chase. 
Some say then "Keep him at home where he belongs!" "All he really needs is a little discipline!"

Really people? Because guess what, now he's the cute dimpled smiling boy hopping down the isles and having conversations with me using his communication device. He doesn't run off. He can even go down isles himself to retrieve items. He drives the cart instead of sitting in it. He talks to us instead of hitting us. 
But you wanted him to be kept at home unable to learn the skills necessary to negotiate the world around him. If our son was left up to society, he would have learned nothing these passed 18 years. Lucky for us, he was raised by us and taught to act appropriately in public and actually become an active participant and loving going out. 

I have some other people that see Kreed now and say but he's no where near as bad as my kid and I just say have no idea the blood, sweat and tears that went into the child before you. You cannot judge for yourself how bad or not our child was (who was routinely labeled the worst case at all autism centers and we were rarely given hope this would improve) by what you see now. You invalidate our journey to get here. You invalidate HIM and the work he put in to get here. 

So how did we do it? We took practice trips. We took him out of the car seat and put him in a seat. We set a favorite destination and gave him instructions. If he got out of his seat or was otherwise violent, the car stopped, thus stopping him from his destination. He was reminded. We used visuals. We used communication. We practiced and practiced until he understood the car stays moving to his favorite places if he stayed in his seat nicely. 

Then we worked on stores. Favorite stores at first. If he ran, we walked out of the store. Then we tried again. Sometimes it was in and out 50+ times until he understood he couldn't bolt. Some days he would hit me so hard I saw stars. Or there was blood. Or bruises. But we kept on because one day I knew he would be bigger. We worked on communication and how he could be a part of the shopping. This he loved. And a day of clarity came. We walked out of his favorite store, something was bugging him but he continued to the car. As I put the cart away, I heard faintly on his device (I need some ketchup). This boy who used to only run to get what he wanted or hit me...used his device for the first time to tell me we forgot something in the store. And he's done well ever since then, always improving his independence. 

But it took practice. Tears. Sweat. Blood. Bruises. It was not easy. The stares, the comments, the look in other people's eyes- all of it. None of it was fun. But it was worth it in every single way. And we continue to expose him to new activities. Our son will never learn how to experience every part of this world if we don't expose him to it. Like camping. While parts of it were not fun and there were tears and sweat and bruises- in the end that was worth it too. 
We are the other side of the spectrum. One not often show, but we do daily. Because people need hope. We were "that family." Aggression, smeared bodily functions, in a cart at a store in the double digits, unable to go in the car or store for fear. He was labeled unteachable and unhelpable. 

But we never accepted that. And then we became "that family" that beat the odds. We continue to never give up and prescribe to the notion that it is our job to help him succeed and experience joy and not hide him away or refuse to fight for his life. This is HIS life and I would say it's become a pretty joyful one.


  1. a story of where true joy comes from ... hard work, vision, commitment and follow through.
    I have a high functioning ASD son with learning disabilitie. If I accepted his diagnosis he would end up illiterate, frustrated and isolated. If I accepted my family's suggestions he would eat nothing but nuggets and chips and stay home from any function.
    I didn't accept any of this and now as a single parent I have a 12yo ready for high school reading and excelling at math who eats most of everything his crazy grow it herself mum puts on his plate and occasionally asks to cook new things for himself and family. He has pride and ambition ... something the naysayers would steal from him ... not this mumma!

  2. Kreed amazes me beyond words! Thank you Erin, you giving him your All! It surely has returned great rewards! Now, Kreed is teaching us so much! Would you please tell us more about Kreed, at birth, at 1, at 2, and on & on. This is one amazing life, that today shines so brightly, it is fantastic! Thanks for sharing what you do with us and hoping you would share more, of the life of our favorite young man! Kreed is the bright light where so many thought there was only darkness and pain! Shine your light Kreed! Erin, you & Kreed are the light so many need to see!

  3. It can be so overwhelming at times I know. It also kills me how people judge others and they have no clue what parents like us go through.

  4. I find that I am often made to feel as if I should apologize because DC is not as difficult as he once was. I'm Lucky, I'm told. Luck had very little to do with it.

  5. Thank you for sharing your story. Of course, it brought me to tears as I read it during teacher-parent conferences. I am a social worker in a public school and have several students with autism. I am always so grateful for parents like you who, despite the negative looks, ignorance of other people and negative/hopeless attitude of professionals or family, continue to advocate and support your child the way he needs it. Please know how brave and amazing I think you, Kreed and the rest of your family are!

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  7. Thank you for reposting the link on your FB page. You worked tireless and endless hours through thick and thin to give Kresd a good life.

    It's not what other people think. People judge you or stare at you and even tell you to leave. Well you could take the easy way out but then you won't be able to teach community skills.

    Kreed worked so hard. I knew that Kreed understood more than most people would know. He was very intelligent. He beat the odds and proved people wrong. He made the strides thanks to his loving Parents.

    His legacy will live on.