April 30, 2009
April 29, 2009
April 28, 2009
This is probably every parent's nightmare. I know I worried about it when Hannah was little. Would she be liked for who she was? Would she find people with whom she could build meaningful relationships? I wasn't that worried about it--it was a concern, but not the foremost in my mind. I guess that by already having withdrawn from some mainstream societal rituals by choosing to homeschool our children, I wasn't that "hung up" about what most people call "socialization". At the same time, I knew I'd do my best to encourage and facilitate Hannah's friendships.
Part of proactively encouraging friendships is taking initiative. I made the decision to have a play date each week, inviting one child (and Mom or Dad) from Hannah's class each week. I wanted Hannah to have some one-on-one time with each child so she could learn their names and interact on her own turf. I think I only made it through half of the class before I lost my pace, but by then, Hannah (and I) were getting reciprocal invitations.
I think another part of the reason Hannah was easily accepted was that I wasn't afraid to bring up The Diagnosis. In the beginning, when Hannah was a baby, it was difficult to mention Down syndrome. There were lots of awkward times when I wasn't sure if someone already "knew"--I'm sure it was more awkward for them than me. Then I discovered that I could casually mention Down syndrome in response to an acquaintance's compliment about Hannah (with babies, everyone wants to know how big they were when they were born, or if they sleep through the night, etc). I'd answer with something like, "She was my biggest baby at 8lbs 8 oz, which is unusual for a baby with Down syndrome." Or, "Yes, she is pretty flexible! Babies with Down syndrome have low muscle tone." Honestly, I tried not to share my new passion for all things Trisomic with people who weren't interested, but some times people really needed an outlet for their curiousity. Hannah does not have many of the common facial features of T21. While I think Down syndrome is plain as the eyes in her head and tongue in her mouth, people who aren't familiar with Down syndrome don't always recognize it. ("Does she have just a little case of Down syndrome?" "Yes! That extra 21st chromosome is very little, but it really is in every cell in her body.")(Really, I only ever said that once to someone--it was to a nurse in a pediatrician's office!)
Get on with the point here Beth!
Over the years, I have heard from many parents who are looking for ways to break the ice with classmates and their families. Some way of "educating" them, but at the same time not lecturing.
Here is a letter I wrote to the families of Hannah's classmates when she started her second year of preschool. (Well, I plagiarized some of it from my friend Mitzi. You have my permission to plagiarize it too, if you want. Just change the names to protect the innocent.)
Dear Open Door Parents, September 2002
As we begin this year we would like to take the opportunity to give you a special introduction to our daughter Hannah who is in the four day four-year old class. This is Hannah’s second year as an Open Door student, and she loves her school dearly. As you know, Hannah was born with Down syndrome, which makes some of her developmental milestones a bit "different" than most typical children. As parents of a child with special needs, we have learned so much about the endless possibilities that these children possess. It’s often a matter of looking at what they "can" do as opposed to what they "can’t" do and finding ways to build new dreams together.
As the school year progresses, the children will grow so fast and become much more aware of the world around them. As they enter this new phase in their development, some children may begin noticing some differences concerning Hannah. Some children will never notice any differences in Hannah. They see and accept her as just Hannah. Some will have questions or misunderstandings. Some will be curious and want to know everything. We would like to take this opportunity to share some things about Hannah and a few facts about Down syndrome in the event your little one might ask you questions or share any ideas that they may be forming about Hannah. Sharing accurate information with your children will help them to understand and embrace children and people that have special needs.
Initially, many children have questions about Hannah’s ability to communicate. She does have delays in her expressive language. What this means to other children is that Hannah doesn’t have as many words as they do, so it’s harder for her to answer them or tell them what she wants to play. She needs a little more time than they might to understand a request or instruction. She sometimes gets frustrated because she can’t explain what she wants to say or how she feels. She has special speech teachers that help her learn to speak more clearly, and she works very hard every day to get better and better at talking.
Hannah also has difficulty doing some physical things like running or climbing. People with Down syndrome have hypotonia, or low muscle tone. Hannah’s muscles aren’t as strong or hard as other children’s. It makes it difficult for her to move quickly. We usually tell children who ask about her ankle/foot braces that her feet have loose muscles and the braces help hold her feet steady inside her shoes. Having loose muscles like this is another reason it’s hard for Hannah to speak. It also slows down her potty training since she has decreased sensory awareness through her muscles.
Hannah is very proud of the large scar on her chest from her heart surgery when she was two. She loves to play doctor and hospital since she has spent so much time in these settings. Her heart surgery was to repair two holes and two malformed valves. We explain to young children who ask that the heart has four separate parts, two have the old blood that needs to be sent to the lungs to get new air, and two have the fresh blood that just came from the lungs. Hannah had leaks between the old and fresh parts, so the doctor had to patch them up.
Hannah wears glasses. This is not so unusual to most children now that they are getting older, but when Hannah was a baby and had glasses, many kids asked about them. Hannah has glasses for the same reason anyone else has them, to help her see better. She does have some specific medical issues with her eyes, but these are not relevant to children.
When a child puts all this information together over time, the inevitable question is "Why does Hannah have all these things?" If your child gets to this point, it may be time to teach them about Down syndrome. Here are some questions your child might come up with, and some possible answers you might want to give.
What is Down syndrome?
Children born with Down syndrome have one extra chromosome in some or all of their cells. The chromosomes contain directions that tell your body how to grow. When a child has an extra chromosome it mixes up her body’s directions a little. That is why these children may look a little different (like usually being shorter than most kids, or have eyes that look a little different) and have to try harder to learn. (Hannah doesn’t really have a classic Down syndrome appearance, so children who know her won’t necessarily be able to recognize these physical traits that are common in the Down syndrome population.)
Will Hannah always have Down syndrome?
Yes, it is something she will never outgrow.
Will she be able to do things like me?
Yes, she will be able to do everything like you do, it may just take her a little longer to learn than most kids. She will learn to talk more clearly too, it’s just that learning to talk is often very hard, but just like anything, with a lot of hard work and practice she will get better over time. Hannah also can do things you might not be able to do yet, like read or use sign language.
Is Hannah sad that she has Down syndrome?
No, right now Hannah is happy to be a growing little girl. She feels successful in her life; she loves to learn new things, just like you and me. You’re fortunate to be growing up in a world where people understand that everyone is unique but that we all enjoy and want the same things, like having loving families and friends, going to school, and being accepted for who we are.
The main idea to express to your curious child would be that Hannah is more "alike" than "different". And that she can learn to do all the things that other kids do, it may just take her a little longer.
There are a couple of books that you may enjoy reading to your child that we would recommend -- "We’ll Paint the Octopus Red" by Stephanie Stuve-Bodeen and "What’s Wrong with Timmy?" by Maria Shriver. We would be happy to lend our copy to you. We are also always open to talking about any concerns or questions you may have. Please feel free to come to us if you’d like to discuss any issues regarding Hannah.
We believe that it takes a village to raise strong, happy, enlightened children that create the foundation for a better future. We thank you for your friendship and support at Open Door. It is such a wonderful nurturing place for all of our children!
Beth and James
The remarkable thing about this letter was the response I got. Every single parent came up to me. Each one had either a positive comment or an honest question. All were encouraging and caring. It was a really good experience for everyone. I had never felt more welcomed.
Full Disclosure: I don't like "We'll Paint the Octopus Red" nor "What's Wrong with Timmy?". I've never owned them. I figured if someone wanted to borrow one of the books I'd snatch Mitzi's. But nobody ever did. Good for them. And that last paragraph is so sappy it makes me kinda want to vomit. End of Full Disclosure.
I'd also like to mention that by now, I am well beyond caring if anyone knows or doesn't know Hannah has Down syndrome. If they can't figure it out by now, well, umm, oh well. Even though I live and breathe Down syndrome, it means so little to me at this point. Hannah is just Hannah. She does have friends who like her for who she is. She does go to birthday parties. She does have meaningful relationships.
April 27, 2009
April 26, 2009
Ms. Megan Blake, with over 400 votes! Megan’s nomination was submitted by Jill Lutz, reading: “After Megan’s daughter was born with Down Syndrome, she started “First Call”, a support group for families whose baby has received a diagnosis of Down Syndrome. Megan also serves on the DSAGR Board of Directors. In November 2008, Megan was diagnosed with breast cancer. She is bravely undergoing chemotherapy and still manages to be a SUPER mom.”
Megan will enjoy almost $4,000 in prizes from our incredible, generous contest sponsors.
April 25, 2009
Hannah has always loved music. When she was just six months old we caught her swaying her head back and forth, rocking to the rhythm of a song. She has learned so much from songs--calendar skills, counting, ryhming, penmanship (yes, really! HWOT songs), jokes, how to cross the street...it's amazing. All that from listening to CDs. If I make up a song (usually an amazingly
A little off topic are we? Yes. Back to the originally scheduled post.
Since we began growing our family in the 80s, we started off with leftover Raffi, Sharon Lois and Bram, and Joe Scruggs. We were already well sick of them before Hannah was born, yet that's what we had on hand. She loved all the songs, as dated as they were.
When Hannah was little she loved the Discovery Toys CD, Sounds Like Fun. It is slow and repetitive (= annoying), but she learned most of her letter sounds from this CD.
Though he's not a singer, Jim Weiss is another of Hannah's favorite performers. He tells the most wonderful stories. All of my kids have loved Jim Wiess' recordings. It did take Hannah while to actually pay attention to a CD without songs, but I looked at it as another auditory processing exercise. (Books with a tape or CD recording is another thing entirely--they helped tremendously with her reading speed--terrific practice for emerging readers.)Bill Harley and Billy Jonas are two other musicians Hannah enjoys. I don't think they are quite on the same level as these next two perfomers though.
In the past few years she's become a fan of Tom Chapin. We don't mind Tom so much, since most of his songs are witty and clever. Hannah has been to a few Tom Chapin concerts (and Kate has even been a back-up singer for him, but she doesn't like him much. Sorry, Tom, the truth hurts, I'm sure.) Some of our favorite CDs of Tom's are This Pretty Planet, Family Tree, and Zag Zig. If you want a sampler of his songs, try Great Big Fun for the Very Little One.
Here are Hannah and Tom after a concert a couple years ago:
The concert was doubly exciting because another of her favorite singers was there as well.
This is Red Grammer. He has some very catchy songs. If you've got a preschooler, start out with Can You Sound Just Like Me. If you like it, then move on to Down the Do-Re-Mi, and Hello World (which is probably better for early elementary ages).
Have you noticed that Hannah only likes male singers? That's not completely true. She does like Cathy Fink, and, of course, Shirley Temple! I recently discovered that Hannah actually can *almost* match pitch if the singer has a high enough voice. I can't sing high enough for Hannah to get into her "head voice". Perhaps there is hope for her--once Kate comes home!
One common thread to Hannah's favorites is that all of her preferred performers also have DVDs of concerts. She really likes to play back-up air guitar when she watches any of these guys perform! (Did I ever mention that she's asking for an electric guitar when she turns 13?)
April 22, 2009
I've been prompted to write a little bit about Hannah's early years by Brandie at Living for the Love, along with several local (and not so local) friends who are transitioning into preschool or Kindergarten.
We lived in Charlotte, NC when Hannah was little. When she was about 2 months old (and finally home from the hospital) we started to look into Early Intervention. I had done some reading about it, and already had an idea about what I thought EI should look like, and how it could/should be implemented.
We started off interviewing with the local county services. We learned that there was no center-based Early Intervention--no colorful classroom filled with therapeutic toys and therapists--no Parent/Child groups to teach parents methods to assist their child with development. What the county offered, with a long wait list, was 30 minutes of an Assistant Physical Therapist, coming to our home. They also offered an "Educator" who would come and "play" with Hannah. And they would bill our insurance company for providing these "services"--and we'd have to pay our regular co-pays.
So, we looked into private therapy. We figured that for the same co-pay, we could choose who would help Hannah--not who was "assigned" to her. We were fortunate to have a very well trained (Neurodevelopmental certified) therapy clinic in town. Hannah started PT with the owner of this group (for those of you in Charlotte, this is, of course, Child and Family Development). When Hannah turned 1, we added Occupational therapy and Speech therapy. (Can you believe that a decade ago, our very first Speech therapist already knew about Oral Motor therapy? I didn't realize how unusual this was at that time.)
She stayed in these therapies until she was 3+. We were feeling the financial strain of paying for 3-5 therapies a week...and I was getting tired making the drive. We looked forward to the school system taking over some of the therapy load.
My older children attended a very groovy, creative private preschool for ages 3-4. (see photo above, age 4, enjoying the shaving cream table at our beloved Open Door School) I wanted Hannah to have the same experience. She needed time to be a regular kid. I had NO intention of putting her in a self-contained classroom. I was not so closed-minded to shut out the possibility that Hannah might benefit from some exposure to such a classroom, but the school system refused to let me see the classroom in action. If I can't see where my child is going, I'm not going to agree to it. It's a stupid rule to not allow parents to observe the prospective classroom, and while the idea behind it is to protect the confidentiality of the students, a simple signature on a waiver form ought to be able to do the same thing. There is no way I am ever going to allow a vulnerable child of mine to go into an unknown setting.
Our first IEP meeting was interesting. It was apparent that the Preschool Special Education teacher assumed that we would follow the standard protocol of letting the "experts" do their thing. All of Hannah's goals were written as if she would be in a classroom setting (and of course, the setting is the LAST thing determined on an IEP). I let them do their thing, but when we got to determining placement, I said that their setting was too restrictive. They did not have an inclusive preschool class for Hannah, and Hannah's regular educational setting was my home, with typically developing siblings. I knew that the school system provided itinerant services to children who attend daycare. Teachers and therapists were even sent to in-home daycares. But the School System refused to provide itinerant services to our home. So, if Hannah was in "daycare" at my next door neighbor's house, she'd get services there, but since she was in "daycare" at my own house, she could not. Don't you love "policy"??
After much hassle, and several more IEP meetings, they relented and Hannah was the first student in the system to receive in-home services (not the same as Home Bound services). Here's the key to this--if anyone wants to push the buttons: For the Preschool setting, there is NO hierarchy of placement settings. Home happens to fall further down the list of placement options, but it is not more or less restrictive than other settings. For elementary grades, home is considered to be much more restrictive than even a self-contained classroom. Every preschool child should get services provided in their Regular Educational Environment. (That's my version of a "yelling" font. One day I'm going to invent it, along with the "sarcasm" font I so desperately need.)
Hannah received 2x 45 minutes with the Special Ed teacher, 45 minutes of OT, 45 minutes of PT and 60 minutes of Speech. There were 6 weeks left in the school year. We ironed out that, in the fall, services would remain the same. They wanted to come into Hannah's private preschool, but I wanted that time to be Hannah's "regular kid" time--where nobody was bugging her about using a pincer grasp with her crayons, or trying to get her to produce 3-word phrases. So Hannah attended her preschool two days a week, and spent the remaining three days shuttling between therapists.
It didn't take us long to figure out that this was WAY TO MUCH therapy for Hannah. She was getting oppositional with most of her therapists (read: all of her school therapists, none of her private ones). By the end of the school year we withdrew her from the public school system.
At age four, Hannah received OT and ST privately, and attended her preschool three days a week.
At age five, Hannah started formal homeschooling (if you could call it that!). We have always had a very relaxed approach to homeschooling. Hannah was an early sight reader (Love and Learning to start, then growing beyond that). I really couldn't tell you exactly what we did in terms of curriculum, but mostly we played games, read books, counted things, and explored the world.
As fas as IEPs go, I found that I was invigorated by the challenge of standing up to a powerful system, advocating for my daughter, getting what I thought I wanted. I know IEP meetings can be stressful and quite difficult for parents who are new to the system. Over the years I've probably been to at least 30 IEP meetings with different families. It is something I enjoy. Many IEPs are uneventful. But I don't mind a little conflict if it happens to occur. It doesn't bother me not signing an IEP. I don't mind going to Due Process. Even if we don't get everything we want, it's always good to have done our best for the child.
April 21, 2009
Thank you everyone for your kind and helpful comments to the Girl Scout situation. I am so thankful for this blogging community--for your ideas, outrage, encouragement, tears, and compassionate responses. Each comment helped me feel better about what happened, and helped me to form my course of action. I also was able to help Hannah move past it too.
Today I finally have time to call the local GS Council to speak with the person who is in charge of placement. I'm not expecting anything great, but at least I'll have the opportunity to have my/Hannah's say.
I also decided that Hannah will finish out the year with this troop. She and I went through the badge book and chose about 6 badges to tackle. We are going to use these as the bulk of Hannah's schoolwork for the last 6 weeks of school (yes, we end in May!). I figured that at the end-of-year ceremony (if they have one), she will at least receive something. She is excited about this. We started on the Safety First badge (she is a little bit compulsive about safety issues, so this is right up her alley). Part 1 of the badge completed. So far so good.
Our Friday trip to Yorktown (primarily for helping a friend at her daughter's IEP) was fun! We hadn't been back in the area for quite a while so it was fun to see old friends. Time passes so quickly with friends! And we get to return, since we chose not to sign the IEP...the placement setting was completely innapropriate for this child. It makes me steam when school systems choose to use "policy" rather than common sense to make decisions about a child's education. It's not like we don't notice!! Anyhow, another day, another meeting.
It must be IEP season--in the past few days I've been inundated with preschool parents who are battling with various school systems. It's just craziness. This is not a process that benefits families or children.
Saturday was Opening Day for the Miracle League! Usually James takes Hannah to all her baseball games, but he had to work on a Habitat House, so I took her. Of course, I didn't take a camera (mine is such a pain with the batter issue, and Hannah's is still MIA). Something blogworthy always happens when I am ill prepared! Hannah was at bat for the Phillies, bases loaded (which they always are in the Miracle League--you keep trying to hit the ball, either pitched or on the T, until you succeed). On her first pitch she connected--hard! Bam! All the way to the far centerfield! She made a home run! In the second inning, the same situation, first pitch--but this one went all the way to the woods! Out of the park! The crowd went wild! (at least, I did. And the crowd did cheer her on.) She was SO PROUD!
We had a neighborhood block party in the afternoon and she told everyone about her Grand Slams!
Sunday afternoon was soccer, then swimming at the gym. Chris and I are in training for his Scuba trip in June, so while we did laps with flippers and snorkels, James and Hannah played in the big pool. Hannah and I also did some gardening. We made string/bamboo fencing for the peas to climb, planted peppers and parsley (can't wait to get some more caterpillars!), and tidied up the raspberry canes. Radishes and carrots are doing well, as are the strawberries. I didn't replace the broccoli Bunsen ate, but he apparently enjoys pepper plants as well, since he unearthed several of the seedlings, eating a few. Maybe I should plant some jalapenos? Do you think the stems and leaves are spicy? He needs to learn a lesson.
The Guilty Party.
Mondays are our busiest day. Hannah has two morning classes at our local Homeschool Enrichment Center. She loves her art class. This session they are celebrating holidays around the world. This week they made posters about Earth Day. Hannah made hers about saving trees. I was proud when she helped a student spell "recycle". It's not a spelling word I taught her, but she knows a song by Tom Chapin called "R-E-C-Y-C-L-E". Fortunately she did not try to sing the song (if I haven't mentioned enough that the girl cannot carry a tune, here's another opportunity for me to say so). If you go to Tom's site, you can hear one of Hannah's all-time favorite songs on his playlist "You're Not the Boss of my Brain". It's kind of her theme song...also on the site is a YouTube video of Tom singing "Not on the Test", which is highly motivational for homeschoolers, but depressing for the country.
In Botany class she learned about how plants make their own energy. I think she suprised her classmates by coming up with the word "photosynthesize". Thanks to Billy Jonas, another of her favorite children's entertainers, she already knew a little bit about it!
Hannah's Dance movement class is on Monday afternoons. She LOVES it. She is excited because her teacher (who has a 2 year old with Ds) is pregnant--with Twins! Hannah is fascinated with pregnancy and babies.
CPAP update: We've had a few ups and downs, with me sleeping in her room once since our first victory. For the most part she's keeping the mask on through the entire night. She has a bell on her nightstand, which she needed just once. Somehow one of her velcro straps came loose, so she needed me to help. She's been getting about 9 hours of sleep each night, which is fine.
Signing off with one of Hannah's new jokes:
Q: What did the dentist give the Marching Band?
A: A Tuba Toothpaste.
April 18, 2009
Megan is mom to two wonderful children, one of whom has Down syndrome. She lives in Richmond, and has been very active with the local Ds support group here. She always brings a smile wherever she goes (at least, all the places I see her go!).
Megan is also battling breast cancer. Her sweet demeanor belies a warrior's strength.
Megan has been nominated for Richmondmom.com's 1st ever "Super Mom" contest! I'm really hoping that she'll win. She says, "There are cool prizes (which she deserves), and I can squeeze in some Down syndrome advocacy to boot...very cool!"
Anyone (and EVERYONE) can vote for Megan. It's quick and easy, though it requires your name and address, as well as an email. I can't vouch for what marketing might result in this info--I used my "alternate" gmail address, and so far, no spam.
Here's the link to vote:
http://www.richmondmom.com/ Follow the link for Supermom '09. Nominees are listed in alphabetical order by name...and there are a lot!
Winners are chosen by the most votes, so don't forget to have your husbands and kids vote, and please feel free to pass this on to anyone who might be interested!!!! Voting ends April 26, winner announced April 27!
April 16, 2009
It's an odd conglomeration of troops--there are about 4 or 5 Juniors, 3-4 Cadettes, and a few seniors. There are many troop leaders, all of whom are apparently very close. I made the decision not to get too involved with Hannah's group because I want her to have the chance to be more independent. She's with me more than enough, and we both can use some time apart. I stay at the church where they meet, but I go read in another room, or find something helpful to do that isn't interfering with her group. I discussed Hannah's abilities and challenges with the troop leader, and felt that she understood that Hannah should, and could, be fully included in activities. Of course I offered to help if she needed it, but explained that I was hoping to let Hannah chart her own course in the troop.
In 4 months, I think that the Juniors have worked on part of one badge. The rest of the time they spend helping the older girls with their endeavors, which seem to be crafts for Tea Parties. This troop likes to invite Brownie and Daisy troops to Tea Parties. They spend several meetings making crafts (painting pine cones into flowers...?? Making Japanese fans and origami? For three or four meetings in a row?). Then there is the actual tea party, where 20-30 little girls come to learn etiquette and gorge themselves on all kinds of food which the troop supplies. They never have any kind of opening or closing ceremony at any meeting. They never do any kind of flag ceremony, or any "Girl Scout-y" things.
This is all fine, I suppose, but it isn't what we were expecting from Girl Scouts. The scouts and leaders are welcoming enough. But they just don't get it. Hannah wants to be a part of the group. She wants to contribute. For the first Tea Party, Hannah arrived in her "hostess" clothes, as requested. However, she never got to do anything. They ended up telling her to go sit with the Daisies and Brownies.
I wasn't happy with that (Hannah is as tall as an average 12-13 year old--and she was 10), she doesn't need to be with 5-7 year olds. I'm not at all about appearances, but really, it doesn't work to put the only kid with a disability in with the little kids. I could tell she felt awkward, not only because she was the only one who was dressed to "work", but because she didn't know anyone at the table and she was so big. But the main point is, she wasn't included in her troop.
I let that one slide. But when I learned that they were planning another tea party, I repeatedly requested ways for Hannah to participate--certainly she can serve snacks and pour tea. Certainly she can bake goodies and bring them, just like her troopmates. The leaders promised to email me or call me with assignments. And even when I emailed them, two weeks ago, I got nothing other than, "Oh, don't worry, we have everything we need." The Tea Party was tonight. I got my first phone message at 4 p.m., saying that Hannah could bring some rice if she wanted (???rice??). I decided that Hannah didn't want to bring rice (who brings rice to a tea party?)--We didn't have time to fix anything appropriate, so she went empty-handed. It was not a problem--there was a big spread of treats (and no rice).
When we arrived this evening, they whisked Hannah down the hall--I assumed to have her get to her post. She did help check in the party guests. I stayed around for a while, but I needed to run an errand. When I came back, I was surprised that Hannah was, again, a guest at the tea party. She had her back to me, so I could observe the situation without having to reveal myself. Ugh. They were so patronizing to her. Everyone was treating her as if she was five years old. It made my stomach drop.
When we started the IEP process when Hannah was 3, we made up a list of Hannah's strengths and weaknesses. One of the threats to Hannah's development we listed was "The low expectations of others."
While we've had small instances of low expectations, with a particular Sunday School teacher, or an occasional incident with a store clerk or neighbor, this is the first time I can think of an entire group of people I know negating Hannah's abilities. And it pisses me off. And I hurt for her.
When she was first born, of course I convinced myself that we'd have the brightest and best child with Down syndrome ever. Over the years, we've gotten off our high horse and re-tooled our expectations to have the brightest and best Hannah ever. Boy do we love her!
Nobody wishes pain on their children. I remember, in those early years, deliberating...would it be easier for Hannah to not know that she's different? If she didn't have the ability to understand her disAbility, would she be happier? If she's aware enough to know about how she's different, how and why it's hard for her to learn, aware enough to understand taunts and teases and cruelty, is that a good thing? It is, if we want her to be competent enough to live independently. So, of course, to be the Best Hannah, we have to expose her to the pain.
As I kissed her good night, I asked her if she liked being a guest at the tea party, or would she rather have worked at the tea party. She said that she'd like to have done both. She cried a little. She's no dummy. She knows what is going on.
I don't know where this leaves us. I think we'll probably have to stick it out until the end of this school year. Hannah's not going to want to quit. And I'll have to try to negotiate my way through the clique of leaders and make them understand they need to give her a chance. I'd rather just quit. But that doesn't do anyone any good.
As I've been writing this, I've been feeling as if I'm not quit able to fully tell the story. I wasn't sure where I was going with this post, other than to vent. And I'm not sure I'm saying anything of value, or that I've said what I wanted to say. I've let it sit overnight, and I'm still not sure whether I should post it "as is", or let it simmer a little. But, onto the blog it goes--I've got go out of town for the day, so no time to wallow.
Thanks for letting me have my own little pity party.
April 14, 2009
As Hannah says, "Practice makes progress. And perfect."
She did it! Last night Hannah slept through the night, with the CPAP, in the conservatory with the candlestick. And *I* slept in my own bed! I peeked in at 7:15 a.m. and she was still asleep. Around 8:00 she emerged, well rested and proud of herself.
I had heard many stories about kids with Ds not ever getting acclimated to using the CPAP. I was skeptical that we'd make it as far as we have, but fortunately Hannah is all on board with anything medical, so she was able to persevere.
It was good that she was well rested because I had a long list of things for her to accomplish this morning. Besides fitting in some schoolwork, we expected company around 11:00 a.m. There was plenty of tidying to do, and some baking. It all was done before our friends Deb, Meghann and Anya came for a visit. We met them in the fall after having corresponded via email for months (maybe even a year?).
Adorable Anya is 5 and was adopted from Ukraine in 2007. Meghann, her big sister, is almost 10 (or will be by the time most of you read this! Her birthday is tomorrow--Happy Birthday Meghann!). The girls kept themselves busy, and then kept the Moms busy too! It was a fun day.
There was plenty of medical care offered to our guests, plus games of Charades and Wii Sports. Playdoh and a Tea Party. Musical instruments to explore. Martha Stewart's Macaroni and Cheese (oh yum...we had it for dinner too, much to Hannah's delight).
We had a wonderful day!
April 11, 2009
For the first time in many years all the eggs were found!
Here are Chris and Hannah relaxing while eating jelly beans and Mike and Ikes.
Extra good news: Last night Hannah did not need any help with her mask! She did wake me up while she was rearranging her bed clothes (noisy hose clanking against the bedrails). But I didn't actually GET up. And she/me slept in until 8:00! I'm hoping that in a few more nights I'll be able to move back to my own room! Did I tell you that Hannah's room is the farthest bedroom from mine? Good planning. Our home health nurse had a suggestion. We could install one of those wireless doorbells, the button in her room and the bell in ours. Of course, Hannah would have to be awake enough to remember to use it. We'll see.
April 10, 2009
So, tonight when I went in to say goodnight at 10:30 (time flies when you play on Facebook), hoping she had put herself to bed, she was happily reading. In bed. Yay!
I let her finish her page (who am I to stop a kid from reading??), and then gently took off her glasses.
I asked her if she could read without her glasses. "No. I can't."
I had her look at the book. "What does this say?"
"Flumm blek dee bon shushun beh." giggle giggle.
It's true, she cannot see much without her glasses. I guess I need give her some new vocabulary words like Focus and Blurry.
Soon she'll be asleep, then I can go in and rouse her to put on her CPAP. We're using the original mask. She's only gotten up once each night for the past three nights! I'm almost believing that she's going to get the hang of it! She wakes up when the sun comes up, turns off the machine and takes off her mask. She hangs it up nicely on the bedpost, and then goes back to sleep again for another hour or two. She's technically following the rules: Mask may be removed if the sun is up.
Thanks for all your encouragement. It's helping me, so I can help her.
April 7, 2009
We do not.
The new CPAP mask arrived yesterday.
The headgear is too big. I tweaked it, but I think it needs a sewing machine before it will really work.Hannah gave it a good try. She didn't fall asleep until 11:30 last night. And by 1:30a.m., after three awakenings from one of the "nasal pillows" dislodging, she sweetly asked if she could have her old mask. My thinking exactly. Fortunately she was tired enough at the point that she slept until 6a.m. without issue. One adjustment later, she was back to sleep for another two hours.
I feel like I'm a whiner.
This mask leakage is not an easy thing to solve. I've been reading some stuff from CPAP users (who generally are adults, who can understand the issues and attend to them independently, or children with complex medical needs who frequently are unable to move much. Hannah doesn't fit in those categories.). Here's what one woman said:
Most newly diagnosed apnea patients are happy to finally learn the reason for their sleepiness and eager to get on with the business of treatment to regain energy. Frustration soon sets in when CPAP is delivered and the mask search begins. It's an educational process of trial and error to find the right interface and then learn to sleep with hurricane force winds blowing up your nose. It's not easy, many give up the fight.There are dozens and dozens of different mask styles out there....and finding the right mask for Hannah's individual face shape and size is key to success.
If only there was a CPAP mask store like Netflix. Try one, send it back to get another, all for one low monthly fee!
April 6, 2009
I hear the sounds of dishes clinking. Someone is preparing food downstairs. I have already eaten, so I'm hoping Hannah isn't fixing breakfast for me as well.
I continue to do morning computer catch-up, but the sounds get the better of me.
Downstairs I go, "Are you fixing breakfast?"
H: Yes! I am! My favorite!
Me: What are you making?
H: Strawberry ice cream. My favorite! With sprinkles.
Do I ruin the fun, or let it go? Anyone want to take a guess?
And now she's emptying the dishwasher. My favorite!
April 5, 2009
Daphne. She was the youngest in the Youth Ensemble. You can see that her harp is smaller than the others.
Kate was in an Anglican style girl's choir for many years. This picture is from a concert where she accompanied her choir (Benjamin Britten's Ceremony of Carols, for you music geeks out there!).
I think her all-time favorite harp job was when she was 15. She was hired to play for a Lufthansa party and they paid her with a free round-trip ticket to any Lufthansa destination! She chose Spain, and went to a language immersion camp for several weeks.
I can't find any recent pictures of Kate harping around, so I'm hoping someone took some today!
April 4, 2009
My excuse: It's the wear and tear on the Momma due to excessive sleep deprivation. There is no drama with CPAP, just excruciatingly interrupted sleep. The new nasal mask is arriving on Monday; I am SO tempted to just take the next two nights off. But I won't. It's not fair to Hannah to stop using it on my whim.
Another excuse: My camera. My poor camera. It soaked in a liter of water for 30 minutes at soccer practice last week. A series of very unfortunate events, too boring to type, resulted in a dripping wet Nikon D40. Much to my surprise, after 3 days of drying, it works! At least, as long as I don't leave the battery in it. It drains the battery very quickly, even when turned off. So there is a problem. For now, I will just keep removing the battery as soon as I'm done taking a picture!
Yet another excuse: Hannah took her camera into her room a couple weeks ago. She wanted to keep it in her room. I heard her taking pictures in there. But she couldn't find her camera the next day, and I haven't seen it either. She's even cleaned her room twice since then. I'm sure I could find it if I helped her clean. But that isn't my style. I usually have be expecting company before I'll help a kid clean their room!
Without camera, no inspiration.
So, today I jiggled my battery in and out and took a few pictures.
We've started to deck out The Boy (Chris) for college. I don't think he's had a blue blazer since he was in cotillion!
He's gotten quite a bit taller since then! He's a solid 6+ feet tall. And now ready to meet the Dean, or the college president, or, even, go to church on Easter.
We were out of butter yesternight. We had to eat Tagalongs instead of making our own cookies. (oh, the torture! Ripping open a new box of Girl Scout cookies instead of making a pile of dirty dishes?? Nibbling on the chocolatey-peanut buttery deliciousness? If you insist...)
Hannah reminded me to buy butter today. Several times. We now have delicious peanut butter cookies.
April 1, 2009
Today she had her piano lesson:
Hannah: Mrs Hughes! I finished the whole book!
Mrs H: What? What do you mean? You still have several more pieces to learn!
Hannah: Nope, I learned them all this week.
Mrs H: Really? Are you kidding me? That's amazing!
Hannah: I am. I am kidding you. April Fools!!
She really had Mrs. Hughes going!
But last night, I was out at a meeting and Hannah was hoping that James would come outside and kick the soccer ball around with her. She knew he had some things to do, so she went out by herself. She came to the back door a few minutes later.
H: Dad? Are you coming out soon?
Dad: No, I told you I have to put away the food and do the dishes. I don't know if I will come out or not.
H: I'll count to ten, and if you're not out here, there's NO sports for YOU.
(Dad did not go out)
When Hannah is in the back yard she likes to dig in the dirt (real grass is non-existant in our backyard--we only have a wide variety of weeds and bare patches). She finds small rocks and pebbles and she likes to throw them and "skip" them. They bounce nicely across the dirt, and she likes to see how far they will skip.
Awhile after Dad did not show up for sports, she came back to the door again.
H: Dad, do you like to skip rocks?
Dad: I like to skip rocks on the water, but not so much in the dirt.
H: (disgusted with the answer) Yeah. Right. What-Ever.
From where is this attitude arising???
Then there is this:
Hannah again. But this is fake--she made it in art class with styrofoam and tacky glue with paint in it. The sprinkles are real. She was really excited about tricking us with this!
Every April Fool's Day I think back 11 years. Hannah was born on Friday the 13th. She had a rough start, with plenty of medical intrigue. She was not released from the hospital until April Fool's Day. While we had our share of fun with these dates, we are not superstitious, we just think it's kinda funny the way it worked out. All the worry and roller coaster rides--they ended up being sort of like an April Fool's joke. All that drama only to find out that Hannah's just a regular kid, growing up so very much like typical kids.