Kreed
Kreed was 18 years old and was non-speaking- meaning he could not use his natural voice to speak. Kreed was diagnosed with autism as well as a number of medical issues: hypothyroidism, epilepsy, SCAD (metabolic disorder), Adrenal Insufficiency (his adrenal system does not work and produce cortisol), CVID- an immune deficiency, POTS/Dysautonomia, hypercapnia, central sleep apnea and severe peripheral neuropathy. He also suffered from a number of food intolerance’s which rendered him gluten, soy, dairy free, as well as other foods. In the end they figured out he has a mutation with the MTHFD1 gene that caused all of these issues. Kreed was alone in the world with his particular mutation, 1 in 7 billion.
Kreed passed away from this condition (respiratory failure caused by the nerve damage) on May 12th, 2016, after a several months battle. For more info check out this blog: http://kreedsworld.blogspot.com/2016/08/it-took-three-months-to-finally-tell.html
Growing up Kreed had many severe behaviors and most did not know how to help him. As he got older, his behaviors became more pronounced and he was unable to even really go to stores or anywhere else. He could barely ride in a car without a massive car seat to keep him in his seat. He would hit, kick, spit, throw anything in sight, drop to the floor and refuse to move and pretty much anything else you could think of. He did not communicate as well. He had a device for many years but no one knew how to use it and did not use it during therapy.
What no one realized was he was communicating through all those behaviors.
Eventually Kreed finally found the right people to enter his life and he communicated using a Dynavox T10 with Compass and he began to talk about anything and everything including his behavior and how to get his needs met. Kreed rarely did anything to be “bad” and tried very hard in all things. We were only just beginning to understand what Kreed has known through the years before he died. Especially with his medical conditions. It took a lot of love and dedication and persistence to get Kreed to communicate and a “No Limits” attitude. He had also had many devastating health setbacks outside of autism and not being able to communicate that impacted his behavior and what he was able to do.
We will always be grateful that Kreed was able to communicate before he passed away. That we fought for him to have his own voice, right up until the very end. Kreed has taught me more about autism and communication than any textbook or lecture. I hope he will continue to teach others as he has taught me through this blog and his facebook and other social media. He has touched my heart in a million ways.
