Thursday, January 14, 2016

Frequently Asked Questions

FAQ's about Kreed's World

1. Name: Kreed Joshua

2. Age 18

3. Birthday: September 9th

4. Medical conditions: Epilepsy, Adrenal insufficiency, Hyperinsulinism, Immune deficiency (CVID), Metabolic Disorder (SCAD), Sleep Apnea, Hypothyroidism, POTS (postural orthostatic tachycardia syndrome), and Peripheral Neuropathy, Migraines 

5. Communication Device he uses: Dynavox T10 with Compass or the Dynavox Compass app on the iPad

6. Favorite colors: Orange, Green, Blue

7. Siblings: Kreed has two older brothers

8. Pets: 3 Labs (Cinna (his service dogs), Kindle (black lab) and Finley (yellow)

9. School: Kreed is currently home schooled due to his vast medical needs. In the past he has attended school and had home-bound services. 

10. How did he get the T10? Through his state and insurance

11. When did he start a device: Kreed had a device as young as five years old (much older technology than now) but no one knew how to work one! So we started again on our own to teach him full on every day at about 12/13 years old before there were even iPads. And we had a fantastic speech that we closely worked with at about 13/14 who really gave us good direction. 

12. How did we do it? It took a lot of work and taking his device everywhere we went and expecting him to use it and not giving him what he wanted unless he did- to get him to use it like he does.

13. Is Kreed aggressive? Kreed is only aggressive when his medical problems flare up and cause him pain

14. Why did you move to Colorado? We moved to Colorado because the high elevation and colder weather help his pain and leg swelling significantly.  His combination of POTS and peripheral neuropathy made his legs super swell and become very painful in heat and elevation below 5,000 feet. When Kreed is in 7-8000 feet he feels so much better. When Kreed lives for too long in lower elevation and heat, he becomes wheelchair bound.

15. Did Kreed ever speak? Kreed spoke and developed normally until he was 3 and then regressed over a period of a year and lost everything- speech, motor skills, self help skills- everything by 4 years old. 

16. The Adolescent Years! Puberty has been rough and testosterone spikes cause all his medical issues to get out of control and he will rage more. At the same time he has developed a lot of skills during these years. But it has been scary as he developed strength and weight and he is much more violent with his rages and when he is angry. It is harder for him manage his emotions. And his sleep! So overall we are surviving but puberty gave us a whole different child and complicated his medical issues tenfold!

17. Greatest Strength: His innocence and pure love for others, as well as his willingness to learn new skills and especially to communicate. 

18. Greatest weakness: Social awareness is one of Kreed's greatest weaknesses. He will watch other children but will not intimate contact or speak to them with his device. He has no self awareness for himself either or knowledge of danger. 

19. Likes - anything Doctor, he loves going to the Doctor and he loves Doctor equipment and Doctor shows, Snoopy, Bowling, riding his bike, music, car trips, hiking, showers, swimming, Star Wars, watching movies like Avengers, Monster's Inc, Toy Story & Tarzan, Horses, and loves Christmas

20. Cool Facts: Kreed is very aware of his surroundings and if asked on his device he can tell you his name and spell it and his age and his brothers names and aunts and uncles and grandparents, and surprisingly to us told us he has autism and how hard it makes things for him to communicate and to move his body. He will say what all his favorite things are and what he dislikes and what he wants and let us know what hurts on him, understands a pain scale and sometimes if we don't know what he wants he will spell it out. We will have a conversation and not realized Kreed was listening and he will suddenly start talking on his device about it or ask us a question!