“The Nobel Prize in mathematics was awarded to a California professor who has discovered a new number! The number is bleen, which he claims belongs between 6 and 7.” ~George Carlin
Today was pretty much a normal day.
- Today I gave Pearlsky 11 different medicines in 23 doses, during seven different “med times.” Knowing that this number has varied since birth, I calculate that I have given her approximately 84,500 does of medicine.
- I changed her diaper five times today. Over her lifetime, accounting for time in school and with nannies, I have changed over 18,000 diapers.
- She had a bath this evening. Probably close to exactly her 2700th (cool!) and I gave her every single one of them.
- Tonight she heard me say “I adore you, Pearlsky, sleep goodly” for the 6,304th time.
- Pearlsky has bitten me three times hard enough to break the skin. I believe at least two times were unintentional.
- In the last 60 days Pearlsky has been visited by her mother twice for a total of about 40 minutes. Understandable since her mother does live a whole 5 miles away.
- Pearlsky’s average seizure is about two minutes because I stop it. If I do not, they have been known to last up to 20 minutes. I estimate she has had up to 4,000 seizures in her lifetime.
- I have raised my voice to Pearlsky once, early on. I still hate myself for that. Even if it is defensible. It simply cannot be defensible.
- A box of Girl Scouts’ Thin Mints contains 32 cookies. I know that because I ate every one of them while writing this post.
I am working on a new project and I need your help. Actually, I won’t do it without you. I find that there is a lot of information concerning “severe special needs” I need that is scattered or difficult to find and no way to pass it on when found (other than a blog, but far be it for me to blog, don’t believe in them). So, the solution I am working on? Well, it is part blog and part “wiki.” The “wiki” part (yes, like Wikipedia) means that it is an effort from many people joining in with their knowledge and in this case, advice. It is vital, though, that facts are differentiated from advice and this must be taken seriously. So if you want to help, and realize that I am now just two days into this project (or just 10 diapers into it, if you will), you can take a peek at the very beginnings, mostly place holding pages, I need more category and article ideas and then we need to start filling them in. So, do not tell anyone yet, just between you and me, here is the very very start, and here is a sample page (content mostly stolen, will be replaced). Do I continue? Will you help?
Great idea, tons of work. Check here: http://www.disapedia.com/index.php?title=Main_Page
as it may be a more appropriate place to put info – or – because wiki is more well known, maybe there is stuff all ready written that can be transfered? There really isn’t enough info for severe, profound or multiple disabilities. Will help if I can….
I love what you say to Pearlsky at night, I raise my voice frequently, I think I would feel sick after 32 thin mints.
Your endeavor seems very worthwhile in creating a comprehensive website that can give answers, ideas, and otherwise unheard of options and information to parents and caregivers of the severely disabled. I applaud your ambition and helpfulness.
With seven meds, fifteen doses, and eleven scheduled med/tube feeding/hydration times, I can relate to your randomly typical day including diaper changes. Alas, I have no thin mints…
I think it’s a wonderful idea! Do continue, and if I can, I will help. I have almost one year rather intensive training in mucus, suctioning, G-tube feeding, sleeping on hospital chairs and surviving on cafeteria food, if you are interested 🙂
I’ll gladly help in any way you need. I don’t know very much about the content, but if there is any other way I can assist, please tell me.
I think you should have a section listing relevant laws, rules, regulations, programs and services available for the disabled according to state. It isn’t uniform throughout the country, which makes it pretty difficult for people to get help sometimes.
Loving all the numbers in your post.
The Wiki is a great idea.
There are several organisations, for instance, one in Britain called The Profound and Multiple Disabilties Organisation. (And one which helps with ‘challenging behaviour’).
And it’s great to have all the information about equipment, professionals and education.
If nothing else, it would be excellent as a brain dump.
And it would answer the question, “What is a severe special need?”
Most importantly, do you need to order more Thin Mints from my Girl Scout 🙂