I have a kid that’s 11, but about the level of a 4-6 month old. She def has some awareness, like a baby does. I don’t think she has any concept of “mom” or “dad” but she’ll smile if she hears our voices. She likes music, she likes squeaky toys, she claps when she’s happy. BUT, she’s non verbal, non mobile, can’t even sit independently, will never be out of diapers, and has all the medical problems you can imagine. She’s been on a feeding tube since she was one, and just today got a trach put in. That killed me. I really was hoping we could avoid it, because that was one of the last vestiges of normalcy we had.
That Kid Speaking video above- I think what that is, because we’re just now learning about this stuff, is a “speaking valve” and the kid might just now be learning to use it. If the kid is fairly successful on the trach, doesn’t need a ventilator, they can get a cap put on it, that ‘s a sort of one way valve. Since the trach is below the larynx, if you breathe in AND out of it, you won’t have air go over the vocal cords. This valve lets the kid breathe IN through it, and then closes, so they breathe OUT through their mouth, passing the air over the vocal cords, allowing them to speak. I hope we can use that, because one of the things that kills me the most about the trach is that it’s robbing her of her voice, and she does have very expressive squawks that show happiness, and even boredom we think.
Hair- Sometimes it’s just easier to keep it short. Some kids pull it, or eat it, leading to bowel impactions, my kid, I’d come in in the morning and find it wrapped so tight around her finger, it’d be purple. So we keep it in a short pixie. Which is a shame, because she has the thickest prettiest hair in the family.
Teeth- Lots of disorders have smaller than normal jaws. This leads to a lot of overcrowding of teeth. Baby teeth that looked sort of normal become a jumbled mess with adult teeth. No one is going to do orthodontia on a special needs kid. It’s expensive, and they won’t understand why they’re being put through yet another painful thing for just cosmetic reasons. Sometimes they get broken too, due to grinding, or chewing too hard on something. My kid actually has extra teeth (extra bones too, extra vertebra, extra pair of ribs, and two tiny patellas on one knee.) As someone else mentioned, the act of eating, and saliva also protect the teeth more than you’d expect.
Disney/Make a Wish- First off, I think, not sure, that Give Kids the World isn’t a wish granting org, it’s the resort/hotel that you stay at in Orlando if your wish is there. It’s a really kid themed hotel, but has all the medical resources on hand you could ever need. They work really closely with Disney, to the point that characters will visit. We just started the Make a Wish process, and we’re going to be a total cliche and do Disney/Universal. I felt like a total charlatan at first, but I have a friend who works for them, and she said to go ahead and apply, because it’s just as much about providing a fun experience for the family and siblings as it is for the Wish kid. To the point that when they begin the process, they ask about the interests of your other kids, so they can bring something for them. We’re going to do that, because I have a young teen who’s totally into Harry Potter at Universal, and is dying to see the Star Wars thing at Disney, and a younger one who’s still totally into Disney. The middle one will be happy with the music and parades and stuff. It seemed like a wish that would work for everyone.
That reddit thread that someone posted several pages back- If it was real, and I have my doubts, that was so sad. If real, I have absolutely no judgement of that mom, but she SHOULD have more help. If her kid is on a vent she should have home health. We have nurses that come every day for 12 hours, and most nights. It has been what has saved our life. We can do normal things with our other two kids, go out for date nights, sleep without worrying about our kid dying in the night. Someone really failed her by not helping her get the aid she needed.
Special schools- Where do you guys live that there are special schools? In our district, each campus has a one program. One for the high functioning, your Down Syndrome, high functioning autistics. One for violent behaviors, one for “life skills”, usually people functioning at a say 4-5 year level, making sure they can write name, address, brush teeth, put on deodorant. And medically fragile life skills, the “potatoes” She’s only in mainstream classes for PE, and maybe library? In PE, there’s an elective where kids can volunteer to be aides to the kids. I figured it’d be punishment, but apparently they have to write an essay and show exemplary behavior to be in it. Other than that, they’re in their special classroom. Why we bother? They have all those ri-goddamn-diculous expensive adapted toys and therapy things that we would never be able to afford at home.
And finally, people don’t realize this, but surprises still happen. Lots of people think that with modern science, and blood tests, and sonograms, and pre natal vitamins, every birth defect is known ahead of time. There are TONS of unknown syndromes still. My kid is in a program called the Undiagnosed Disease Network to try to find another kid with a similar phenotype so they can compare their genomes. She’s had a full genome workup, and nothing has hit, so they think she must have a single gene mutation of an unknown gene. The shit of this is, there’s an assumption that since you must have known, you have chosen this life, and are probably anti-abortion. That couldn’t be farther from the truth for us. I have no shame in saying that if I knew, I would have aborted my kid. She isn’t in pain all the time, but her life isn’t great, and she probably won’t be around that long. We will do all we can to keep her healthy, comfortable, and happy, but I wouldn’t have chosen this. It’s like having a very high maintenance pet. When she dies, I will be sad, but have been prepared for it for years.
trisomy18.blogspot.com
trisomy18.blogspot.com
