March 31, 2009
Please go pledge to end the derogatory use of the word "retarded".
Years ago the medical terminology for classifications for lower cognitive funtioning were Idiot, Moron and Imbecile. These words have been completely incorporated into everyday speech. The same thing is happening with the word Retarded.
Let's work to clean up our speech and our attitudes towards individuals with cognitive disabilities!
March 29, 2009
I took this picture at midnight when I was wondering what the strange whistling noise was coming from her bed. She was lying on her stomach and the headgear was buried in her pillow--the exhale vents were blocked somewhat, so her breath was whistling on its way out of the vents. She slept through it, so I went back to sleep too.
Today she has been a ball of energy! She helped take Katie to the airport, and has been on the go for the past 4 hours! Kite flying, playing with dogs, bike riding, dancing to music... Good thing soccer was not cancelled this afternoon! She could use another hour of solid running.
March 28, 2009
2 times we ate out at restaurants this week: Cheesecake Factory and Saigon River (Vietnamese).
3 crazy kids making noise!
4 newly planted baby broccoli plants were eaten from the garden by Bunsen.
5 nights we will spend at Easter Seals Family Camp this summer--we just got our confirmation letter! We are excited to spend this time with Hannah!
6 dozen molasses cookies (Katie's favorite) were devoured within 24 hours. And not just by Kate.
7 colors Hannah used to paint a terra cotta flower pot yesterday.
8 weeks until Katie's graduation!
9 years since Hannah had her open heart surgery.
10 minutes Hannah has been waiting for me to say goodnight.
March 25, 2009
Kate's morning report from her CPAP duties was not encouraging. After getting up with Hannah seven times she took the whole mask off and they slept the rest of the night. I'm starting to think that maybe I should research melatonin...
We blew off school this morning, and went shopping for a Graduation dress for Katie. Success, and on sale! I hope it's warm enough in Minnesota at the end of May for this dress....maybe we should hunt up a sweater too. We did find some lovely hats...
Hannah had some money burning a hole in her pocket (from her job as her brother's keeper i.e. laundress, and from the old men who paid her for dancing for them at the Moose Lodge last week. Yes, I did not feel quite right about old men hugging and slipping my pubescent daughter a few bucks. I know they were trying to make her day, and contribute to the cause, so it wasn't really that disgusting, but it did make me think twice!). We headed to Target to look at the toys. But she was a shrewd shopper and ended up buying a Scooby Doo DVD on sale.
We hurried home to drop off Kate and the loot before Hannah's piano lesson. Hannah's teacher, Mrs. Hughes, is always so very kind and encouraging to Hannah. Today Hannah worked on her newest piece, "The Lonely Goatherd" (from Sound of Music).
Then Hannah was off to her first ever public speaking event! Not really, she was more of an interactive Exhibit A for my short presentation to a Psychology class at the University of Richmond. This upper level psych seminar was studying short-term memory and how it impacts learning. So I was asked to come in and talk about how individuals with Down syndrome are impacted by smaller digit spans (a digit span is how many pieces of information can be held for the short-term). I did a 10 minute talk, and some show-and-tell with Hannah, showing the types of techniques we use for homeschooling (presentation of new information, flash cards,
spelling techniques, etc). Then Hannah had her turn in telling the class about herself. At first she was a little shy. She had a list of things to tell the class ("I play piano" , "My brother pays me to do his laundry", "I like to cook my favorite food: Pasta", etc), so after a little help getting started, she was off and running. She ended with some of her favorite jokes, which were heartily enjoyed. She did a terrific job!
We battled the rush hour traffic to meet the rest of the family at our favorite Vietnamese restaurant. Yum! We drove into the parking lot. Hannah saw James' car and said, "Oh great, there are those meddling kids!"
And now we're home! Scooby is playing downstairs and I'm ready for some quiet mindless activity. Or sleep. Or maybe that's the same thing.
March 24, 2009
I'm probably going to go into way too much detail for most of you, but I have had some questions about the CPAP. Feel free to fall asleep, using a regular, uninterrupted breathing pattern if you are bored with this.
Here it is in all its glory and fury. Can you believe that hose is 6 feet long? How many times do you think it will fit around a portion of Hannah's body while she's sleeping? (The Answer Is: Three, if it is still attached to the box.) This beautiful piece of medical equipment can be yours for just the cost of 3 sleep studies (the latest one ran $1400), one T&A surgery, a few co-pays and a monthly rental charge of $270, plus an added $12.79/month for "supplies". Thank you, Mr. CBRE Human Resources Department for our HMO that covered everything except for $100 of a sleep study (with no hassles whatsoever)!
Hannah is doing well coping with the CPAP. I have been sleeping in her room. Fortunately she has twin beds, so I am relatively comfortable. The first two nights went well; she awakened only once each night needing adjustment to her mask. When she nudges the mask, the seal is broken and the pressurized air whooshes on out. It's fairly loud. I can hear it if I'm 2 rooms away on the computer, but that's with my superpowered mother ears--you know the ones that Dads don't have? So, for the first nights I'd get up and fix her mask. I was thrilled to see that she was not flopping around, changing positions every 30-45 minutes (which is common for individuals with Ds--you do NOT want to share a bed with them! They are so restless.).
That was the honeymoon period.
I was hoping that her lifelong restlessness was a byproduct of her apnea, and now, with our brand new breathing apparatus she wouldn't move around as much. Umm. No.
Since those first two nights Hannah has returned to her regular restless self. On the bad nights, her mask needs adjusting every 45 minutes. On good nights she adjusts it herself and she needs help only two or three times to fix the hose or put her mask back on (she can take it off in her sleep--she's so talented!)
Day/Night 4 was a difficult time. Hannah was upset--I think she was thinking that the CPAP was going to be a one-night stand, like a sleep study is. She was unhappy, even weepy, at different times during the day, clearly stating that she did not want the CPAP anymore. By evening James and I decided to stop discussing it with her because it is a non-negotiable item. She HAS to get used to it, and she will HAVE to adapt to sleeping with it. After explaining our stance, she ponied up and stopped complaining.
She hasn't balked at the mask since. She is used to having some time awake in bed to listen to music or quietly read for a bit, but now she can't. She can't wear her glasses with the mask, and the white noise, while quiet, makes it difficult to hear music. So it's a new routine for her.
James took a night or two over the weekend, so I got a break. Last night was the best yet--she only needed help once! And tonight, Katie (home on Spring Break) is taking the overnight shift!
Hannah has learned how to remove the mask in the morning, and how to turn off the machine. I hesitated to teach her this, thinking that once she's alone in her room she may just decide to take it off all night. But it's more of a safety thing. If she needs to get out of bed for some reason, she needs to know how to detach from the machinery.
Last Friday night Hannah's neurologist was the speaker for our Ds support group. I had a chance to talk with him, and he suggested we try a different type of mask. We are waiting for the home health office to bring it over to try. Apparently most of the children who have apnea are not as mobile as Hannah (kids with more involved physical or medical disabilities), so the home health nurse doesn't really know what to do about Hannah and her leaky mask. This new one is smaller, and fits in her nose rather than covering it. They call it a nose pillow. I cannot imagine it! It sounds worse than what we've got, but if it doesn't dislodge easily, then we want it!
For now, the girl is happy enough. Just click on this picture to see a ridiculous grin. I think that's mostly because Katie was behind the camera, but we'll take it no matter what the reason!
March 22, 2009
2. Fresh baked goods out of the oven.
3. The smiles of Hannah and her cousin Mary when they are together.
4. Dogs (too bad I’m allergic to most of them)
5. Hot Chocolate
6. My close-to-my-heart friends, Roxanne and Wendy
7. Freedom—in my country and in my life
Seven (though there are SO many more) blogs I love are:
http://saundersgang.blogspot.com/ (especially since she’s actually posting again!)
March 21, 2009
1. Learn more about Down syndrome! Here is a link to some Myths and Facts about Ds. http://www.ndss.org/index.
2. Talk to your children about people with differences. The way I explain Down syndrome to young children who are curious is to say that when a baby is first growing inside the mother there are directions inside the baby that tell it how to grow, what color hair and eyes it will have and how tall it will be. A baby with Down syndrome has an extra set of directions, which makes it more difficult for the baby to grow and develop. A baby with Down syndrome can learn to do all the things that a typical baby can do, it just takes longer to learn because of all the extra directions. Older kids can learn about chromosomes and how individuals with Down syndrome have an extra 21st chromosome. The medical name for Down syndrome is Trisomy 21. Visit my blog (or other blogs about disabilities) with your children, so they have a connection with someone with Ds. (warning: you might want to pre-read some of my posts…I cannot guarantee I’m not a raving lunatic at times. It can be frustrating having a child with a disability, and I try to give an accurate representation of life with Hannah). http://hannigans.blogspot.
3. See if your library has current information about Down syndrome. Do a quick online search of your library’s listings for Ds. If they have no books that have been written in the past 5-7 years, please ask them to update their books. Any non-fiction book older than 15 years should be removed from the shelves.
4. Visit Reece’s Rainbow, an international Down syndrome adoption ministry. Learn more about how children with Down syndrome are treated in other countries. It is much like the United States treated individuals with cognitive disabilities 50 years ago. http://www.reecesrainbow.c
5. Write a short note to your legislators telling them that you want them to fund the Prenatally and Postnatally Diagnosed Conditions Awareness Act (the Kennedy-Brownback bill). Currently up to 90% of all prenatally diagnosed fetuses with Down syndrome are aborted. It’s important to understand that this is not about pro-life or pro-choice, but rather about providing parents with needed data and support. Unfortunately the worst presenters of a diagnosis of Down syndrome today are medical professionals because there are no mechanisms to train them, to teach them how to deliver that diagnosis and to present the options, all of the options.
6. If you’re a woman, start a conversation with your OB/Gyn about concerns you may have about getting accurate information to families that receive a prenatal diagnosis. Prenatal testing is soon going to change, and the OBs are the first to deliver unexpected news. Bring the doctor a copy of this research: http://www.brianskotko.com
7. Watch a movie featuring a person with a disability: Emma’s Gifts (I’m biased since Hannah and I have cameos in this documentary), Duo, The Other Sister (which I think is pretty funny).
8. Contact your local Down syndrome parent support group (just Google Down syndrome and your geographic area) and email them to see what sorts of ways you could help. Usually volunteers to assist with childcare, programs and events are more than welcome!
10. Remove the word “retarded” from your everyday speech. It used to be a medical term (as did the words “idiot”, “imbecile” and “moron”), but has become such a derogatory word that it is on its way out. The new “R-word” is Respect.
March 18, 2009
Friday and Saturday were filled with Hannah's birthday celebrations. She had a terrific time. We are very blessed to have made so many friends in the year we've been here. Years ago, a mother who had an 11 year old with Down syndrome told me that she had found in any group of children, there is always one or two who are naturally are drawn to a child who is different or who has a disability. I have found this to be true. There is always at least one person who is willing to step forward and give Hannah a chance. She has not ever really experienced any kind of exclusion (which, of course, was one of my initial fears for her when she was first born). Here in Richmond there must be a higher rate of kids with that natural attraction--she's got a great set of friends.
Fortunately, Hannah's hair was long enough to make a 10" pony tail--so for the second time, she was able to donate to Locks of Love.
March 15, 2009
You can view "Be My Brother" here. Then come back and tell me what you think! It's only about 5+ minutes long.
March 14, 2009
It all started at home...the first gift to arrive was this:
She tried it on, but we decided not to tackle adjusting to the CPAP on her birthday. She actually was excited to get her hands on some new medical equipment!
Next came the phone call from Katie:
I finished making the cake this morning (I think I could be a professional procrastinator--if there was money in that line of work). I was worried that the cake wouldn't be large enough for everyone to have some, so I decided to make some baseball cupcakes as well.
Hannah was thrilled with the gifts her friends gave her.
March 12, 2009
Packages from grandparents have been arriving, party favors purchased, cake decisions made, restaurant chosen, and grins abound! I still have to wrap presents and get a few ingredients for the cake. And come up with some back-up activities/games for the party on Saturday. She is expecting nine friends to come.
This year Hannah wanted a sports party. I've mentioned before that she is my only child who is interested in organized sports. She doesn't like to watch sports on TV, she likes to play them. She currently takes a dance movement class and swimming lessons. But soon both baseball and soccer season begins and she's been chomping at the bit. So, for the party, we've rented an indoor sports facility (good thing, cold rain expected here); kickball, soccer, relay games, Moonbounce, etc. will be on the agenda for the Saturday. I'm one of those moms who always has parties at home. I think we had one other party out of the house, because we had new carpet laid and the house was for sale. It's strange not having to plan. It sort of doesn't feel like a party. Or at least, it doesn't feel like one of our parties (less work for Mom!!). But Hannah will enjoy this very much.
The weird part about sports and Hannah is that she is not particularly well coordinated. Yet she is better at baseball than I am (which isn't saying much...when she is clumsy I often say she comes by it genetically, and I mean from my gene pool, not her bonus gene pool!). She LOVES to play in the yard with James (he's the designated sports parent, primarily because he does know how to throw, catch and kick, unlike the rest of us).
I can easily say that gross motor skills are not her strength. She comes from a long lineage of uncoordinated people (on the maternal side). She still marks time going down stairs (taking one step at a time rather than alternating feet). She cannot carry much up stairs because she needs one hand to hold on to the railing for stability. She has orthotic inserts in her shoes (no more AFOs!) which help her keep her pronated feet aligned. Her right side has always been weaker than her left (when she was a young baby she rarely used her right arm and her head was always flopped to the right, since the muscles on the right side of her neck were weaker). We worked hard with physical therapy to balance her out, and if you don't look too closely, you'd never really notice anything, other than she's physically slower than most kids.
When she was about three years old we stopped Physical Therapy (PT). We wanted to focus more on her speech and cognition. When she was five years old she had a set of evaluations (gross motor, fine motor, cognitive testing, etc). So she had not had PT for a couple of years. Now, any parent of a child with a developmental disability will tell you that even though tests don't truly measure important things (like how funny or compassionate or hardworking or full of love an individual is), sometimes the scores really feel like a kick in the stomach. We know that "it's just a snapshot" and "it's a new testing environment"; we know all the excuses. But it still is a difficult time when the statistics say that your bright, delightful, charming five year-old child has the physical skills of a 20 month old. Or fine motor skills similar to a 2 year old. Or two years behind on speech, or whatever the scores of the day reveal. They can knock you down.
But, this time, when the results came back that low, I really didn't care. I saw what skills they tested, and I saw how miserably she failed. No, she could not jump with both feet 3 inches off the ground. No, she did not know how to throw a ball underhand 6 feet and hit a target. No, she could not walk on a floor level balance beam or strip of tape. But I discovered that I didn't give a hoot (actually, I think my words were more along the lines of not giving a "rat's @#$"). None of it was relevant to who Hannah was, or who she would or could become. I knew that her lack of aptitude for jumping would not determine what kind of job she would get as an adult. I knew that she would not need to throw a ball a certain distance to take public transportation to get to church or a friend's house. I knew that she would not be required to walk on a strip of tape when she shopped for her own groceries. Really, none of it mattered at all.
What we're after for Hannah is meaningful relationships (with God, family, neighbors, friends, sweethearts, spouse, who knows? Why not?), as much independence as possible, fulfillment in her chosen career, and a feeling of belonging to a community. That's what we want for each of our children.
Hannah has no idea of her challenges. As far as I can tell, she has a pretty good self-image. She thinks she's a terrific swimmer, a good baseball player, a capable soccer student. She is motivated. She's got a better attitude than I do most days. Well. Maybe not, depending on the tasks of the day. But she's willing to do the work. And there is no test that measures enthusaism.
So we leave the First Decade of Hannah, and enter into more adventures, more friends, more opportunities to jump higher than we did before, in a Moonbounce. I'm sure she can get 3 inches off the moon.
March 8, 2009
I have not yet told Nan the origin of her name. It is a rather colorful story. And brutal. And quite politically incorrect.
When we were awaiting Hannah's birth, there was great drama between Kate and Chris. Kate was hoping for a sister, and Chris was hoping for a brother. James and I always liked to be surprised at the birth of our children, but for the first time, for the sake of a peaceful entry into siblinghood, we decided to find out the gender via ultrasound. Upon learning that he was expecting another sister, Chris was as devastated as a seven-year old can be. As a consolation prize, we decided to let him come up with his baby sister's name (reserving parental veto power). His first choice was Guenivere. Which was promptly vetoed. He did some research and found that the Americanized version of Guenivere is Jennifer. Which was also vetoed (nothing personal Jen, Jenny, Jennifer, et al).
You can read the Wikipedia version here. Also, I see on Wiki, for those of you following along, that there is reference to Hannah Duston's mother as a Webster (see my earlier post about Noah and Daniel Webster).
So the original Hannah Duston was a woman who, after having her newborn child killed in front of her, was taken captive by natives. She escaped by killing and scalping her captors, and made her way back to her family. She was a woman who met her challenges. Just like my girl. We didn't know our Hannah was going to have as many challenges as she does. But she's got a fighting spirit that has carried her through many medical and developmental obstacles. Well named, well loved.
But watch out for that tomahawk.
An addendum: I just found a link to the story I grew up with. It's quite a bit more gruesome than the Wikipedia version. You might not want to read this. Really. But there it is. Tempting you.
March 5, 2009
March 3, 2009
1. What is something mommy always says to you?
Get things right. (I don’t believe I’ve ever said this in my life.)
2. What makes mommy happy?
If I read a book to her.
3. What makes mommy sad?
Sticking out your tongue to be mean.
4. How does your mommy make you laugh?
5. What was your mommy like as a child?
Doing art. (Wrong.)
6. How old is your mommy?
7. How tall is your mommy?
59--That means tall. (I'm 5'5")
8. What is her favorite thing to do?
Taking care of beautiful children.
9. What does your mommy do when you're not around?
You have to do stuff yourself.
10. If your mommy becomes famous, what will it be for?
Being a statue.
11. What is your mommy really good at?
Drawing (yeah, right...maybe stick figures)
12. What is your mommy not very good at?
Spelling (Hey, I can spell ophthalmology!)
13. What does your mommy do for a job?
Being the boss in the house.
14.What is your mommy's favorite food?
15.What makes you proud of your mommy?
(long silence.) Maybe you're a good cook.
16. If your mom were a cartoon character, who would she be?
Sully from Monster’s Inc.
17. What do you and your mommy do together?
Read, eat, cooking, taking care of dogs.
18. How are you and your mommy the same?
Same last name.
19. How are you and your mommy different?
Different color hair and eye color.
20. How do you know your mommy loves you?
Sing a nice song--"I love you so much. I love you so much. I can't even tell you how much I love you. You're special to me, you're special to me, I'm lucky to have you as part of my life."
21. Where is your mommy's favorite place to go?
Inflation Nation or, maybe the circus.
Hannah used another one of her invented words today. I had forgotten this one.
I was getting out some leftovers for lunch. She said, "Oh, chicken pot pie from yesternight."
March 2, 2009
Here's my Horton-loving Cat in the Hat. We're glad we've got the Good Doctor in our house!
March 1, 2009
The weatherwoman got it right....three+ inches. So far it's been coming down at an inch an hour. Chris' classes are already canceled for tomorrow. Even if we only end up with a few more inches, y'all have to remember, this is Virginia...we don't have snow plows. Well, actually I don't know if they do. I know that North Carolina doesn't, and I've only ever seen one in the four years we've been in VA.
I'm hoping Hannah isn't going to ask for Turkish Delight. Hot cocoa I can do, but I'm currently out of Turkish Delight.
I didn't manage to post about my trip to the AIA Conference in Washington DC, so now I get to do it after the fact! I was sent to the conference by our local support group, The Down Syndrome Association of Greater Richmond. It was great! Some of my favorite researchers and Ds supporters were there--Dr. Bill Mobley and Dr. Brian Skotko, as well as lots of other presenters. The conference was for affiliate Ds groups to connect and communicate with one another--what's working, what isn't and what is coming down the line. The DS Guild of Greater Kansas City created the Affiliates in Action conference three years ago. This year it was sponsored by the National Down syndrome groups (Society and Congress), and my favorite, the DSRTF. The new Linda Crnic Institute for Down Syndrome (in Colorado) also sponsored the conference.
The big news is that the NDSS has changed its mission and strategy. The old mission was to support education, advocacy and research. Now it's "to be the national advocate for the value, acceptance and inclusion of people with Down syndrome." They are focusing on Public Policy. They have also produced some public service announcements that Regal Cinemas will be showing nationwide.
The other NDSS news is that they are revamping some of their policies regarding the Buddy Walk program. They will now have a licensing agreement that requires a 7% net donation to go directly to NDSS. I personally do not have any problem with this--but there were many at the conference who were infuriated. Keep in mind that many groups did comply with the "requested" 10-30% of net donations, but others would send NDSS only $500, or nothing at all. I don't want to get into arguments about this, but it seems to me that 7% is a reasonable amount.
I missed the most exciting part of the conference though--I couldn't get child care for Thursday, so I didn't get to go to the Capitol to meet Congressmen/women and Senators to discuss the Down syndrome Caucus and other issues relevant to the Ds community. By all accounts, those who went had great success.
The first evening I happened to walk past a line for hors d'oeuvres and someone saw my name tag and stopped me. It was my online friend Kathy R from the Michiana Down syndrome group (Northern Indiana and Southwest Michigan)! We had never met in person, but used to correspond about our kids with Ds. Her son, Danny, is the same age as Hannah, and they homeschool as well. It was fun to meet her in person. I met many other new friends, from all across the nation, and some from Canada as well. I went to dinner with new friends from the DSA of Charlotte, NC, and also hung out with one of the researchers from the DSRTF. It was a great experience.
I've been to many many Down syndrome conferences and symposiums. If you have someone in your family with Down syndrome, I highly recommend that you attend at least one national conference--you'll come away excited and energized (well, after a good night's sleep in your own bed).
I had been hoping to meet up with some of my old college friends who live in the DC area, but the timing didn't work out. I think I'm going to have to plan another trip to DC just hang out with them! And meet up with my legislators...