Shirley Lockwood:  

nct Trisomy Medical listserv. Basically, my friends & I were absolutely sick of hearing from the powers that be, that our growing, thriving children were "incompatible with life", and didn't deserve medical care. Head researcher Debbie, was a deep lurker on that listserv & approached me about helping her put together a research project that would answer some recurring questions from parents and doctors...like what is the potential lifespan of a full trisomy 18, and why do rare trisomy children have a seeming tendancy to die after being put on Phenobarbital. The answer to that last one is, they're not normal and just don't respond to drugs (and other things) the way a normal child does. Doctors don't tend to get that! That's why a sedative can cause hyperactivity in a T18, and my PT6p would spike a super high blood sugar when forced to fast for lab work. Never could convince her GP that she wasn't actually type 2 diabetic, even though he acknowledged that her A1c's were all within normal range. It's a real thing, called paradoxical reactions. Like simple Lasix turning her normally pasty mucous into cement consistency plugs, necessitating a trach tube, that they told me she'd need for the rest of her life. Wrong! They would have kicked me out of the hospital, if they'd caught me slipping her Coca Cola, but it totally cleared out her mucous, so they declared a "miracle cure", and took out the trach. Workplace: From a part time telephone solicitor for a carpet cleaning company in college, "No sir, the phone book DOESN'T mention that you don't have carpeting", to a full time medication-treatment nurse in assorted venues (with of course the seemly mandatory VERY short term boyfriend who forgot to mention that his last job in the prison infirmary was as an inmate on a drug dealing charge), on to part time staff relief & private duty nursing between marriage and the arrival of the first munchkin. But when I couldn't find reliable, affordable childcare to go back to work, I opened my own licensed daycare home, and spent the next 20+ years raising both mine and other people's children. 5 yrs in, it just kinda naturally morphed into a special needs daycare. By the time my youngest was 18, I was in semi retirement with only one 20yr old Down Syndrome boy left for vacation and before & after school care. I'd been watching Ryan for over 15 yrs, and probably still would be, but for a pipe breaking in Doug's office, forcing him to move to their Escondido office. Ryan moved on to other arrangements, and I became the In Home Support Services worker for my own handicapped adult daughter. Basically that meant that I became a member of the Domestic Worker's Union, and the state paid me to do what I'd done for free for her when she was a minor. But they KNOW it's cheaper to pay a family member to stay home with them, then to risk our going to a better paying outside job & having them placed outside the home totally on their $'s. Worked for me, because I was still the most affordable and dependable worker I could get. Besides, that left me with the time and ability to do volunteer work. That job ended with her death in 2014, and a caregiver hiatus except as back-up childcare for my 2 grandsons (the youngest has Down Syndrome), until my dad's current needs. And so my new chapter began, progressing to a short time as care giver to the 2 men in my life..