He was born in August and his mom used to babysit for my kids. He has Down syndrome and a heart defect for which surgery is scheduled.
But, that said, this little guy has done better than expected from the get-go. He was discharged from the hospital earlier than predicted as a newborn, nursed better than they said he ever would, and gained weight better than anyone thought possible, and in spite of our back-and-forth weather he hasn't even been sick...
Through the end of December he received a montly injection of medication to prevent RSV (a potent, highly contagious virus responsible for the common cold and more.) A nurse went to his house to administer it to keep him out of the germy doctor's office.
First of the year his dad's company changed insurance carriers and the new company dragged their heels about whether or not the medication would be approved (the med costs $1000.)
Two weeks after the med was due the company finally approved the drug (though not the nurse to administer it.) The drug has been ordered, but takes a few weeks to come in.... so no January dose will be happening.
Saturday this sweet little trooper was admitted to the ICU in our local hospital... (his grandmother sent me this picture and said I could post it.)
And what virus has he been diagnosed with??
Please pray for him.
(And forgive me, but $1000 doesn't seem like that much at this point....)
(Photo of a sweet baby boy with medical tubes in his mouth.)
When my oldest daughter was 11 days old she got sick. She was logey, wasn't feeding, was sleeping (which trust me, was wrong.) She didn't have a fever, but she just was not right. I called the doctor's office and the person on the phone told me she understood my anxiety being a new mother and all, but I should just hold tight and try to give her more fluids, especially since our own doctor was off that day.
A couple hours later I called them back and that phone lady heaved a heavy sigh and said, "Okay, you can bring her in if you can't handle things."
I packed her and all the stuff you have to pack to mobilize an infant. All the while telling myself that I was NOT being stupid and I was doing the right thing, and even if I WAS wrong it was better safe than sorry, and d---mmit I AM handling things!!!! This IS handling things....
We were with the pediatrician for about 5 minutes when he walked us over to the emergency department of the attached hospital for a spinal tap. She was admitted for meningitis...
And when my youngest daughter was having seizures in the arms of a neonatologist (who is also a dear friend) that same office staff reluctantly agreed to see her only after I insisted... She was tested.
Was she seizing? Of course she was...
Our doctor changed office shortly after this, which is the only reason we are still with her.
All of that is ancient history of course.
Or so you'd think.
Last week my friend was talking with a mom she knows who is in her 40s. This gal took her 10 year old grandson to a local clinic. This mom/grandmom is petite, looks really young (bless her) and is from a lower SES... She was dismissed out of hand by the physician until she finally said something they understood as meaning 'this wasn't her first time around the block.' Only after that did they really look at the boy. And yes, they found some real problems that needed real treatment.
The doctor then apologized and said, "We just thought you were another teen mom...."
Now I would have pointed out that it was impossible for a 16 year old mom to have a 10 year old child, but this gal is smarter than me.
She said, "What if I was? What about my age would mean that my sick kid wasn't sick???." She told them outright that they needed to treat people better.
And yesterday... yesterday takes the cake.
My next door neighbor's daughter (who used to babysit my kids!) was over and her 4 month old son (who also has Down syndrome, interestingly) was sick. The mom called the doctor to say he was having trouble breathing. The on-call told this first-time mom that he was fine and they didn't want to see him unless he had a fever.
They dealt with that for a little while and then asked if I would come look at him. (I'm a nurse though I work with adults--old adults!) He didn't have a temp, and my stethescope was bigger than his entire body, but he was really struggling to breathe even when asleep... I said I thought I would want him seen if he were mine, and suggested calling the doctor's office again. I said this time tell them you want him seen--don't ask, just tell.
They were sent to an ambulatory after hours center--who called an ambulance. Today he is in intensive care on a ventilator.
I know everyone needs healthcare and no office can see everyone every day. Some kind of gatekeeping is probably necessary, but must it consist of profiling and preclude listening??
Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.
My Aunt Mary Ann, my father's oldest sister lived in our town when I was growing up. She would always say that she was my 'spinster, librarian aunt' which use to upset me to no end. It was true. She lived alone and she was a librarian, but she was also brilliant and engaged and vital, and words like "spinster" used to offend my spirit when I was young.
I would spend about a weekend a month at her house (overnight!!) Not only would she have picked out the best books in the world for me, but we would cook and sew and work on projects and snack on cranberry juice or tea and homemade cheesecake-brownies or lemon bars (or chocolate chips right out of the bag!) And she would talk to me about beliefs and ideals and her philosophies on education and more.
One weekend nothing we touched worked--sewing projects wouldn't go together, we ran out of supplies for some other project right in the middle, and the recipe we were experimenting with for dinner went up in flames. We were both miserable.
On the way to Don and Bob's (One ground round-ONE!), I said that I was surprised that we were going out.
She smiled at me and said, "Terese, what we need now is a success-experience."
Apparently this was not just her idea, but something written about in education articles at the time. The idea was that to be effective you sometimes need to prime the momentum pump with something positive.
Dinner was delicious, and I had to admit the weekend turned around--the next day's projects weren't nearly as disastrous.
This little nugget of wisdom has stayed with me ever since and it is surprising how helpful it can be--in life and in advocacy.
When my kids were little and things would go sideways, ramping things back and playing a game we were all good at, or taking on a task we knew we could conquer would put us back in the mood to try something more challenging.
It works at school and with programs as well. My friend's son demonstrates some challenging behaviors at school. When the classroom team is overwhelmed and jumping to all sorts of drastic conclusions my friend and I often brainstorm about how to make things better. At one point we chatted about success-experiences and she decided to try it. She listened hard to hear what the teachers were saying was their biggest problem. Then she applied her know-how to that problem--just that problem.
She offered the team strategies for addressing that problem. She created visuals, provide documentation and whatever else it took to iron out this one issue. The team was not exactly receptive to her ideas at first, but when they applied her strategies and they worked, really good things began to happen.
The team became energized and started believing that they could be successful with her son. And my friend's credibility as contributing team-member was enhanced.
This is something we both use as a first-line strategy nowadays.
I think it is more effective if you pick a high-impact success (a fulcrum), but if things are bad enough start with ANY success you can get.
The same is true in systems advocacy. Little successes set the stage for bigger successes. Getting simple legislation passed creates relationships within the disability community and with community leaders that can lead to bigger projects and bigger successes.
(Black and white pictue of Don and Bob's restaurant with lots of vintage cars in front from here.)
Well, my copy of Seven Days at Oak Valley arrived in the mail yesterday afternoon and I picked it up, thumbed through it and thought I would take a minute to read the first couple of pages.
It's a murder mystery set at an institution for people with developmental disabilities in 1978. And the main character--the one who figures everything out--has a cognitive disability. The author, Ruthie-Marie Beckwith is a long-time disability rights advocate.
Before I knew it I was on page 50 and there had already been 2 deaths (with hints of others), a couple of scandals and political tangles were afoot, we've seen glaring examples of institutional living and abuses of power, and we have met a handful of compelling characters.
Then I had to feed my family and drive people places...
I am resisting (with all my might) the urge to check the last page to make sure the characters I like make it through to the end.
I don't know how it is going to end, but it's pretty engaging so far!
At our house holidays are wonderful. We like the food, the clothes, the decorations, the gatherings, the music...and presents of course, we like those too!
In fact we hate the holidays to end. Jenn told me yesterday that she wants Christmas music back--and this after listening to the radio station that only plays Christmas music, at top volume, every moment that she was home, from Thanksgiving until last Sunday when they went back to regular music. (Personally I am ok with a break from the 75 versions of Frosty the Snowman!)
For us the biggest holiday challenge is gifts for Jenn. She is 16, but a lot of the things 16 year olds like do not appeal to her at all.
She is not close to driving, likes new clothes but doesn't LOVE them, and has no interest in video games or MP# players because they really aren't all that accessible for her (though if we recorded Christmas music... wish I'd thought of that before now!) She doesn't really understand gift cards until she is standing in a store...
She does like movies, but she has tons because that's what folks get her. She likes CDs and books (but at her reading level without being too babyish can be tough too.)
Frankly, she would love toys, but toys would not help her grow up. And she needs to...
She isn't picky, and thankfully she is mannerly, but people want to get her something she will like and be able to use.
This year she got some clothes from her sister and her aunt who are fashionistas so that was good. She got a movie and some books that she seems to like. She got some fancy bath items. She also got a game (not quite a toy, but still fun.)
This year was actually pretty successful.
Her favorite gift?
A picture of Zac Efron to hang in her room (from very cool grandparents!) She explained to the newbies in the house that he was in the movies High School Musical and 17 Again.
"And he is mad HOT!!" she screamed.
I admit watching people's reactions when she tells them about it is kind of fun.
And I know she is not the only teenager to have a poster of him in their room.
Win, win, win!
I am already writing ideas down for next year...
(Black and white picture of a 1951 Christmas tree from here.)
I have a very uncomfortable relationship with disability simulation exercises.
Don't get me wrong, I want to like them. They are always well-intentioned. Designers always hope that getting people familiar with the sensations, experiences or equipment of disability will make them more welcoming and understanding of people with disabilities in their lives.
The idea seems sound and it should work, yet most of these exercises--from riding in wheelchairs, to wearing blindfolds, to puppets and role-plays and beyond--just seem to make most participants feel sorry for people who live with disabilities everyday and relieved to get back to their own lives.
Pity and relief are not what I'm aiming for.
I have been puzzling about this for a long time. I know that information alone does not change behavior, and I believe that making concepts experiential improves the likeliehood of student change... Yet these programs just don't teach the things I want people to learn.
For a long time I thought it was the "how" of the experiences that sent folks down the wrong road--maybe things weren't multi-sensory enough, or structured enough or something. But now, I think it's the "what" of the activities that misses the mark.
I have recently realized that disability simulations create the experience of changing from not having a disability to having one rather than the experience of day-to-day life with a disability. Consequently, I think participants get a taste of the emotions that accompany really big changes in our lives. Participants learn that those feelings are what it's like to have a disability.
Well, the emotions of 'big change' certainly can accompany new disability diagnoses (and can be intense.) There can be fear, anger, embarrassment, depression, denial, bargaining and more. For a while things can be utterly frustrating and baffling.
Many people who acquire disabilities through age, illness or injury go through these feelings. Parents whose children are diagnosed with a disability may experience them as well.
But--and here is the kicker--those 'big change emotions' are temporary in disability just like they are in life's other 'big changes.'
And over time most people respond to disability the same way they respond to other big changes.
Eventually people go from saying "I want my old life back" to "Now I do things this way."
Disability simulations just don't impart that perspective. So how do we create that?
What can we change or add to our sensitivity and awareness programs to make the message of understanding stronger?
I am having a totally spoiled moment. I am sitting on my couch eating my breakfast of oatmeal with bananas and walnuts AND brown sugar (I usually add in some vanilla yogurt instead. But bananas and yogurt together is just like requesting a migraine, and who would do that? So I must have sugar.)
I am looking out at white snow tipping the black trees against the brightening sky and thinking about writing.
Not writing. Just thinking about it. But that's more than I've done in a couple weeks so it feels like progress to me.
So first of all, Happy New Year to everyone in the blogosphere--In hope your year is lovely in all the ways that you hope it will be, and more.
Also, I am trying something new for accessibility for this blog. I have added Odiogo. You can click the button at the top of each post to hear it read, or you can click the icon in the right column and subscribe on your ipod or whatever... This is an experiment. I hope it will be helpful for people with vision or reading disabilities. Let me know what you think.
I read this article today on Media Dis n' Dat. I think having a suite for families traveling with children with autism is a good idea. I think it would also be marketable for families with someone who has Alzheimer's disease.
I am not resolving to post more because that is a guarantee that I won't, but I will try...
(Oops, was going to post a picture, but my camera and memory card just left with my daughter... So I am posting this video made by kids who grew up on my street, hope it makes you chuckle.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.