Budding Self-Advocate

Today was busy (something new?).

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...

And here's the dress....do you think the hat is just enough, or should we consult Aretha?

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.

CRAP CPAP

Blogger is not my friend these days...first it wouldn't let me space my paragraphs in the last post, and now it won't let me strike out the word CRAP in my title. I cannot fully blame Blogger because my laptop has never behaved well in its 15 months of existence. But hey! Lookie there! It did work out after all! Now if only I could strike it from our nighttime routine things would be well again.

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!

Blog Award

My blogging friend Beverly gave me this award (a couple weeks ago...I don't mean to be delinquent! I am appreciative, I just always seem to be running late in everything I do these days--but hey! I did get the World DS Day post up on time!) Thanks Beverly!

Beverly and I found each other through the Homeschooling Down Syndrome Yahoo group. Her son Noah is bright and charming. At least, from what I know of him on his blog! She has lots of great ideas for homeschooling, or "bonus schooling" for those of you who do your homeschooling after regular school! Her March 4th post about making a book is perfect for those of you who are looking for ideas for making high interest personalized books (this means you Sonja, Kelly, Catherine, Wendy, Kim, Deb, Donna R....). Go take a look!

For this award, I am to share 7 things I love and then nominate 7 more blogs. And, as usual, I will pawn off some of my seven things to Hannah. Or, no, maybe I will do my 7 and then her 7.

Here goes:

Seven Things I Love

1. Family
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

Hannah loves:

1. Noodles (her first two word phrase was "More noodles")

2. Her siblings

3. Books (my mother is so happy!)

4. Swimming

5. Chocolate

6. Teddy Bear: Molasses

7. Coloring and drawing

Seven (though there are SO many more) blogs I love are:


http://saundersgang.blogspot.com/ (especially since she’s actually posting again!)
http://davehingsburger.blogspot.com/
http://sarahely8989.blogspot.com/
http://familymctravels.blogspot.com/
http://www.canicontrolmylifeificantcontrolmyhair.blogspot.com/
http://kissesfromkatie.blogspot.com/
http://malakaistow.blogspot.com/

World Down Syndrome Day 3-21

When word of World DS Day started to make the rounds on Facebook, I had some friends who wanted to know what they could do themselves to make a difference. So I made this list. I realize most of the Hannigans' readership already has a personal interest in Down syndrome, but for those of you new to the journey, you might want to read through these, and perhaps share them with family members and friends. (And to explain the choice of date for World DS Day--the 21st day of the third month of the year represents the 3 copies of the 21st chromosome. Kinda cute. Now someone explain how October became Down Syndrome Awareness Month??)

1. Learn more about Down syndrome! Here is a link to some Myths and Facts about Ds. http://www.ndss.org/index.php?option=com_content&view=article&id=59&Itemid=76 Did you know that 80% of babies born with Down syndrome are born to women under the age of 35? I know teenagers who have had babies with Down syndrome.

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.com/

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.com/ Consider supporting a child’s adoption with a monetary donation. I have given donations in honor of my mother for Mother’s Day.

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/images/stories/Files/italianjournalofpediatricsfinal.pdf

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!

9. http://www.downsyndromeinfo.org/dreamsinreality Watch this short online video for some inspiration.

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.
http://www.r-word.org/

My Girl

She's going places in the world.

Oh where to begin?

I am so far behind in blogging, even though it really has only been a few days!

I guess I'll have to do this chronologically, if I can remember that far back...

Last Thursday was a busy day for Hannah. I don't recall everything we did that day, but I do have photo documentation of some of it!

Hannah FINALLY learned the Elementary Backstroke! She actually hasn't been working on it for very long this go 'round. Her swim instructor has tried it a few times in the past year, but Hannah is a sinker. She still doesn't know how to float on her back, but if she has some movement, she can stay up.

Following the swimming lesson was her Comedy Show at HatTheater, where she takes acting classes. The class did some classic slapstick/vaudeville routines. Hannah's favorite was when she ran out on stage yelling:

"They're after me! They're after me!"

Another child said, "Who's after you?"

H: "The Squirrels!!! They're after me!!"

Child: "Why?"

H: "They think I'm NUTS!!"

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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.

It is lovely to celebrate Hannah's birthday with people who enjoy being around her!

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Sunday afternoon brought a new look:

The Down Syndrome Association of Greater Richmond had a Hair Cut A Thon. A local salon opened on Sunday and donated all proceeds to the group. Several friends attended to support Hannah and our DS group.

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.

I didn't get a good picture at the salon. This is one from Monday night's Miracles in Motion class. It was parent observation night, and the class put on quite a show! Later that night they performed for the local Moose Lodge (thank goodness they had a moose head on the wall--I don't know if I'd ever hear the end of it otherwise!). There is no doubt, my girl loves being on stage! She was grinning and blowing kisses to the audience.

So that brings you *almost* up to date. The problem is, I can't remember what I'm leaving out. It must be the sleep deprivation. Oh, that reminds me what it is...CPAP. I'll save the ups and downs of that for another post. (And why is it that I'm so tempted to misspell that with an "R" instead of the first "P"?)

Thanks for all the birthday wishes for Hannah--she enjoyed every single one of them!

Be My Brother

I just was visiting another blog and Sheila posted a link to this great short film. It features a man with Down syndrome, who manages to befriend a woman who is very unsure of how to interact with a person who is "different". This film won first prize at Tropfest, the largest short-film festival.

You can view "Be My Brother" here. Then come back and tell me what you think! It's only about 5+ minutes long.

Party Girl

Whooey! That was a couple of busy days! We are officially partied out!

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:

Rounding out the day were gifts from the family, dinner out (Uno's), and cheesecake, followed by massive amounts of new video watching.

The party was this afternoon! It started off with a robust game of kickball, followed by soccer skills and Moonbounce. Everyone ran to their hearts content.

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.

We played Pin the Ball on the Soccer Field. (Soccer field courtesy of James, the artistic one)

We all had fun at RISE, especially the birthday girl!

We arrived home to find one last package waiting at the door!

Now we have only 4 days until the next birthday in this family!