Showing posts with label video. Show all posts
Showing posts with label video. Show all posts

Thursday, April 9, 2015

A friend indeed

In Maggie's last years she became friends with a new and older group of kids, including Thanh, Ben and Clay. Thanh was a mentor to Maggie and other kids, especially those who used talkers. Thanh herself used one and was quite good at it. She invited Maggie to an art show along with the other guys and we went and had a great time.

Maggie was a bit intimidated because these were the older cooler guys and she was the young tag along. They never treated her as such, but I could see how nervous she was. The more we hung out with them, the more comfortable Maggie was. In fact, I began to feel uncomfortable because I was the only parent. Each of them had someone young and cool as a companion and Maggie had her old mom. I felt like the old tag along - but they never treated me like that either. It was a welcoming group that gave Maggie's last year or so a new depth and provided much needed recreation. We went to the park, to baseball games, and bowling. Maggie loved all of it.   Here they are bowling at either Clay's or Ben's birthday party. We went for both birthdays, and I'm telling you those guys are bowling sharks.


Thanh, an accomplished artist has been telling me lately that she was preparing something for Maggie. I didn't know what it was, but last night she sent me this video, which I will treasure always.




Thank you, Thanh for this wonderful remembrance and thank you and Clay and Ben and all of you for being her friend and making her last year so much fun. You were friends indeed. 


Sunday, February 2, 2014

Super bowl communication

The Super Bowl was just sad. I didn't really have any skin in the game - I was supposed to hate Seattle because they beat the 49ers, but I just didn't care. I thought even the ads were pretty "meh" with the exception of the pistachio ad by Steven Colbert.

That is until the Microsoft ad.

As you might imagine, this one really caught me. I was a little teary and so so so proud that Maggie's method of communication was featured in a Super bowl ad. We are becoming mainstream!



 I have to agree Technology, for all it's faults and glitches, has improved our life tremendously. Except that  my daughter manages to nag me incessantly with her talker. I mean if I'm just a little late with her food, she starts acting like she has never been fed in her life.


If you can't hear it, she says Mom i want my dinner please, I'm hungry, I'm thirsty, I want to drink some water.

High tech nagging is so much cooler, isn't it.






Monday, January 27, 2014

Just Say NO



My friend Sharon gave me a little present the other day. It is a pre-programmed button that says NO. In fact it says NO about ten different way.

No!

NO NO NO!

Did you hear me? I said NO!

It's hilarious and probably something everyone should have handy. Mom can I take the car? NO NO NO! Another volunteer opportunity? NO WAY! solicitors at the door or on the phone. "Did you hear me? I said no." Aren't you making dinner? Absolutely NOT.

In this house I could think of a certain someone who will really make excellent use of it. Maggie has a very clear sign for no. She just slams her hand down on her tray. She does it so hard there is a lump on her wrist where she hits.  This button gives her some options and intonation. She can't be sure which "NO" will come up, but it doesn't matter because they are all pretty funny.

She was practicing last night and could not stop laughing.


I have never seen Maggie adapt to something so quickly. I showed her once and she was clamoring to have that thing on her tray. This is a powerful little tool for her. Her favorite line is "Absolutely not" but every single one of them made her laugh. 

Sharon tells me there is also a "yes" and a "maybe" button. Maggie doesn't really have a way to say maybe so that might be worth a try, but what's funny about maybe? Besides, her tray will get a little crowded with all these options. Obviously her dynavox has yes no and maybe on them, but Maggie needs something quicker and with more intonation. 

If there's only room for one, I think Maggie has made her choice. 

 JUST SAY NO!
  


Tuesday, January 14, 2014

. Miss Congeniality - Just ask her

It's so easy to point to Maggie and take note of the things and abilities she lacks. She cannot walk, she cannot talk, she cannot eat etc etc. It is harder for people to note her strengths. Enter mom and her blog.

Let me assure you all, Maggie has plenty of strengths. Among those is an overabundance of self esteem. She is her own biggest fan. It's hard not to agree with her because it is so hilarious.

By way of example, take this evening. Maggie was using her talker to say the nurse (Fely) is coming tomorrow. Generally she says "Fely is coming tomorrow on Wednesday to take care of Maggie"  Today she switched it around. She said, "Fely is coming tomorrow to take care of Miss.....".

And the sentence stopped. Maggie waited. The change made us all pay attentions - which was of course her intent. 

Fely Asked her, "Miss Third Avenue?"  Maggie slammed her hand down to say NO.
"Miss San Francisco?" Again, an emphatic NO
"Miss California?"  Yes. Yes, that's it. Miss California.

She inserted that into her sentence and was quite pleased with herself. 


She will undoubtedly crown herself Miss America and then Miss Universe, but she wants to get out of her teens first. No bathing suit competition. But she really does want World Peace. 

Wednesday, January 1, 2014

You are never too old for toys

especially when they make excellent noises



This was a gift for Maggie from our friends Mark and Vicki.  Needless to say, she likes it quite a bit.

 May the simple things in life bring you this much joy in 2014.

Happy New Year.

Wednesday, July 31, 2013

Feed me!

Maggie gets all of her nutrition through a gastrostomy tube. The tube is in her stomach and I just attach an extension and pour her medically prescribed food down it. Of course I wish it weren't that way. Eating and drinking is very important to us socially and tube feeding is not part of that. But we can keep her satiated and healthy, so the social thing is secondary. And, it is easy as pie, in all honesty.

The tube was placed the day Maggie was born because her physical anomalies made it impossible to get food into her any other way. There were several anomalies both above and below the stomach that were eventually repaired surgically. By the time they were repaired, though, Maggie was three months old. The natural ability to swallow had faded and she had to learn it. It is a complicated motor function and because of the Cerebral palsy, that we really didn't know about yet, she could never master swallowing.  So the tube stayed.

We tried for a long time to do regular feeds. She never could handle liquids, though she used to take small bits of baby food. She loved pureed fruits, but even then it was only a bite or two and she was overwhelmed by the sense of things in her mouth and exhausted by concentrating so hard to swallow.

(Note, swallowing is extremely difficult. We all do it naturally, but if you think about it, which Maggie had to do, it's very difficult. Try to swallow five times in a row and you will see what I mean.)

Maggie's tube is just a part of her. She still feels hungry and demands to be fed just like any other kid. It's just that both her way of eating and her demands are done a bit differently. Lately if her talker isn't attached she just pulls up her shirt to show me her tube when shes' hungry. It took me a while to realize what she was doing, but now it's just the norm. It's pretty hilarious.Here is a reenactment for you.


If her talker is attached she just uses that. Maggie eats the same thing every two hours. 5 to 6 ounces of Vivonex RTF (ready to feed). It does not resemble anything you or I would eat. Yet Maggie figured out very early to ask for the appropriate meal at the appropriate time. (breakfast, snack, lunch, snack, dinner, snack) That still blows me away. She just did it this morning. Actually she does it several times a day. She starts with simply demanding it and I make her say please. Then she starts nagging by adding mom mom mom mom. 



We are working on a "Thank you, that was delicious" sentence, but Maggie won't tell a lie. 

   

Thursday, July 4, 2013

Happy 4th of July

Happy 4th of July to all of you out there in Maggie's World.

Maggie started out the day waving the flag. This is not only symbolic but a real achievement for her. It is a tremendous physical challenge for her to hold onto something. She never dropped it!



Thursday, December 27, 2012

Teach the Children Well...

This story has been making the rounds. It is lovely and deserves teh attention it is getting. Rather than try to retell it, I am copying the article from the NY times and will like to the video. Sorry the fontt keeps changing, just ignore that.

Well worth your time and attention
________________________


Laws of Physics Can’t Trump the Bonds of Love




Jeffrey Wright is well known around his high school in Louisville, Ky., for his antics as a physics teacher, which include exploding pumpkins, hovercraft and a scary experiment that involves a bed of nails, a cinder block and a sledgehammer.
But it is a simple lecture — one without props or fireballs — that leaves the greatest impression on his students each year. The talk is about Mr. Wright’s son and the meaning of life, love and family.
It has become an annual event at Louisville Male Traditional High School (now coed, despite its name), and it has been captured in a short documentary, “Wright’s Law,” which recently won a gold medal in multimedia in the national College Photographer of the Year competition, run by the University of Missouri.
The filmmaker, Zack Conkle, 22, a photojournalism graduate of Western Kentucky University and a former student of Mr. Wright’s, said he made the film because he would get frustrated trying to describe Mr. Wright’s teaching style. “I wanted to show people this guy is crazy and really amazing,” Mr. Conkle said in an interview.
The beginning of the film shows Mr. Wright, now 45, at his wackiest. A veteran of 23 years teaching, he does odd experiments involving air pressure and fiery chemicals — and one in which he lies on a bed of nails with a cinder block on his chest. A student takes a sledgehammer and swings, shattering the block and teaching a physics lesson about force and energy.
But each year, Mr. Wright gives a lecture on his experiences as a parent of a child with special needs. His son, Adam, now 12, has a rare disorder called Joubert syndrome, in which the part of the brain related to balance and movement fails to develop properly. Visually impaired and unable to control his movements, Adam breathes rapidly and doesn’t speak.
Mr. Wright said he decided to share his son’s story when his physics lessons led students to start asking him “the big questions.”
“When you start talking about physics, you start to wonder, ‘What is the purpose of it all?’ ” he said in an interview. “Kids started coming to me and asking me those ultimate questions. I wanted them to look at their life in a little different way — as opposed to just through the laws of physics — and give themselves more purpose in life.”
Mr. Wright starts his lecture by talking about the hopes and dreams he had for Adam and his daughter, Abbie, now 15. He recalls the day Adam was born, and the sadness he felt when he learned of his condition.
“All those dreams about ever watching my son knock a home run over the fence went away,” he tells the class. “The whole thing about where the universe came from? I didn’t care. … I started asking myself, what was the point of it?”
All that changed one day when Mr. Wright saw Abbie, about 4 at the time, playing with dolls on the floor next to Adam. At that moment he realized that his son could see and play — that the little boy had an inner life. He and his wife, Nancy, began teaching Adam simple sign language. One day, his son signed “I love you.”
In the lecture, Mr. Wright signs it for the class: “Daddy, I love you.” “There is nothing more incredible than the day you see this,” he says, and continues: “There is something a lot greater than energy. There’s something a lot greater than entropy. What’s the greatest thing?”
“Love,” his students whisper.
“That’s what makes the ‘why’ we exist,” Mr. Wright tells the spellbound students. “In this great big universe, we have all those stars. Who cares? Well, somebody cares. Somebody cares about you a lot. As long as we care about each other, that’s where we go from here.”
As the students file out of class, some wipe away tears and hug their teacher.
Mr. Wright says it can be emotionally draining to share his story with his class. But that is part of his role as a physics teacher.
“When you look at physics, it’s all about laws and how the world works,” he told me. “But if you don’t tie those laws into a much bigger purpose, the purpose in your heart, then they are going to sit there and ask the question ‘Who cares?’
“Kids are very spiritual — they want a bigger purpose. I think that’s where this story gives them something to think about.”
Mr. Wright says the lecture has one other purpose: to inspire students to pursue careers in science and genetic research.
“That’s where I find hope in my students,” he said. “Maybe if I can instill a little inspiration to my students to go into these fields, who knows? We might be able to come up with something we can use to help Adam out one day.”
_________________________
Here is the link to this exact article where you can watch an amazing 12 minute video if you are so inclined.  I highly recommend it. 

Tuesday, December 11, 2012

Tree by Maggie


The tree is up and decorated. There was great debate between the Douglas Fir and the Noble Fir. I really like the fullness of the Douglas and Steve really like to be able to see the ornaments on the Noble. I let him choose and he went Douglas for me. Really, though, no matter what kind of tree we choose, I am always pleased once it's decorated.

It's generally a rather drawn out process taking perhaps three days to complete. The process includes   getting the tree, letting it sit in its stand drinking water for a day,  bringing it upstairs, cleaning up the trail of needles, putting on the lights, waiting for us to be together to put on the ornaments. We were going to decorate it Sunday night, but Tim didn't get home from work until almost 10PM.  So it waited another day. It was done last night and now I have to put the empty decoration boxes back downstairs. Hopefully that won't take me another day.

Putting on the ornaments and the other decorations is fun. Each ornament brings some memory or story or remembrance. We have an abundance of fishing ornaments that have been given to Steve over the years, several from the kids early years, a Santa wearing a Giants shirts and this year we received a nutcracker wearing a Giants uniform, which goes perfectly with our extensive nutcracker collection.

 Tim was intrigued by an ornament that said "to Sally from Joey" and wondered who "Joey" was. He thought he had stumbled on a great story, and  seemed disappointed when I said SHE was my secretary in about 1992.

Maggie helps too. Tim makes her hold the ornament or decoration and then point to where she wants it. It's a S L O W process but he is very patient with her. He makes he laugh which only slows things down further but certainly makes it more entertaining. After every successful placement he would say "tree by Maggie" and she loved it.

Here's a minute or so of their interaction. This had already been going on for several minutes before I turned on the camera. She wasn't being very cooperative making him do all the work, but he would have none of it.


May all your decorating be as fun!

Sunday, October 28, 2012

Sweep!

Maggie is a Giants  fan. And she is excited that the Giants Swept the Tigers. This was taken about 10 seconds after the end of Game 4. 

She is a lucky charm. And that settles it. She can stay!


Wednesday, October 17, 2012

Speech

The following is the video of Steve's talk at The Memorial Service for Ambassador Chris Stevens. It's about 12 minutes long. I am posting this more for me than for anyone else but feel free to watch it if you are interested. He really did a wonderful job.


Tuesday, September 4, 2012

Extreme Parenting

My friend Elizabeth, from a moon worn as if it had been a shell prepared this lovely video by, of and for parents of children with disabilities.

I kept promising to send her a picture of me holding up words of guidance for parents who are new to this world, but I never quite got to it. I'm sorry I procrastinated (again) because I would be honored to be part of this. But I don't know what I could add to this, I think it says it all

Enjoy the video and share it wide and far.



Wednesday, July 25, 2012

Cooking with Maggie

Maggie is delighted that we are back and she can help me cook again.

She handles the equipment, I do the clean up.


Sunday, June 24, 2012

Weekend

Nice weekend. Yesterday Maggie and I went downtown yesterday to the Westfield Mall and San Francisco Centre, which are connected at each floor. Maggie enjoyed cruising around two separate malls without having to get back in the car. Twice the entertainment. And we still didn't buy anything.

Today we went down to the Hyde Street Pier, but Maggie slept through the entire outing. Even the Balcutha, which she usually loves (because she had a field trip there in the 5th grade) could not entertain her.



Imagine that. Taking a teenager on an outing and having them act bored or sleepy through the entire thing. Shrug.


This evening we are just hanging around. Maggie is catching up on The Economist. She finds those articles so very inciteful, even upside down.




Hope your weekend was good.

Monday, June 18, 2012

Playing Catch

It is perfectly normal to go to the park to play catch with your daughter, but when we go we play catch WITH our daughter. And she loves it. Fortunately neither of us has ever failed to make a catch.





Saturday, April 14, 2012

No Place Like Home

A frustrating morning is turning out alright.

Steve needed to bring his car to the dealer for some recall item. I laughed when I heard him make arrangements to drop it off at 7:00AM on Saturday. He's not really an early morning guy. But it made sense. He needs the car all week and dropping it off early Saturday insures it will be done today. Still 7:00AM is early for him, especially when he arrives after 11:00PM from an overnight trip to court in a distant county.

I thought what the heck, we'll make an adventure out of it. Maggie and I would pick him up at the dealer and the three of us could go out to breakfast. At 6:55 AM I had to yell at him to get out of bed and get the car down there. Maggie and I left about 15 minutes after he did and picked him up. At the last moment I took pity on the dog and invited him along. That was a tactical error because it further limited our options.  Now we needed to find a place to eat outside so the dog wouldn't freak out. But it was a little cold, so the outside patio had to be in the sunshine for Maggie and for us.

We wandered about, but many places like that cater more to the Brunch set and weren't even opened yet. We headed down by AT&T Park, because its Giants opening weekend and everything is in celebration mode. Not really many breakfast places down there - but lots of taverns. Didn't seem right for us. Maggie started coughing and as we turned to suction her, I realized I forgot the suction machine. We had to rush home. (It was just too early for me too)
 
We dropped off the dog and started out again, this time in our neighborhood. The neighborhood places are small and don't really fit Maggie's chair. I'm not making an ADA statement here. She would sort of fit and no one would turn us away, but it's not very comfortable.  Steve suggested another neighborhood across town and I said No. I'm not driving any place else. I was irked. Something as simple as breakfast out was too complicated for us.

This stuff gets old.

We gave up, went to Safeway, bough some eggs and came home. Of course I dropped the bag of groceries and lost three eggs in the crash which only added to my frustration.

When we arrived, our back deck was bathed in sunlight and protected from the cool breeze. I made scrambled eggs and toast and we found exactly what we were looking for. Dorothy was right. After all of our searching, it turns out there really is no place like home.

Maggie enjoyed that but she was ready to move on to the next adventure. She didn't have much fun riding around town in the dawn's early light either. She just worked her Dynavox until she assured Steve they needed to head to the park. They took the dog leaving me a few minutes of peace.


I'm going back out to the deck with the paper. 

Monday, March 26, 2012

Make it snappy!

Maggie sat patiently in her chair while Steve tried yet another repair of her headrest. If we can get it somewhat stable, Maggie and I can go out and have some fun. Being stuck in the house on Spring Break is no fun. I just received an email that a repair guy will come to US tomorrow! Yay!!!

Once Steve was done I knew Maggie had things she wanted to say but she also needed to eat. I asked "do you want your talker?" she signed "yes." I said, "Ok, do you want me to feed you first?" She slammed her hand down in an emphatic NO!  She wanted her talker so she could communicate. I laughed and started setting up the talker. That process takes a few minutes. I have to affix the tray and the pole and then the talker. She turns it on and it has to boot up, which takes another minute or two.

I finished and looked at her and said, I know exactly what you are going to say" She smiled wickedly and made this sentence

"Mom, breakfast now, I'm hungry." 

Food tastes so much better when it's ordered.


Steve also entertained Maggie by juggling oranges. if you're stuck in the house, it's good to have an entertaining Dad. (see I didn't even call him a Clown!)

           

Thursday, March 22, 2012

Signed, sealed and delivered

Despite my best efforts to get all the paperwork done, I had to make another trip down to Social Security yesterday. Our lengthy visit a couple of weeks ago and the follow up phone call wasn't enough. Somehow in all the confusion we never completed the paperwork for me to be Maggies' designated payee for her benefits, when they start to come.

The call came from the worker I went to before. When I arrived he said he didn't know why things weren't approved already because her case is so obvious. That's nice to hear, but I never expected it to be done so quickly. He was busy and asked his co worker to assist me. Of course his co worker has never seen Maggie.

I had to complete a lengthy interview and show my good moral character and promise, under penalty of perjury, not to steal or misuse the funds intended for Maggie. OK. Sure. Of course now that Maggie is 18, she has to agree to this. Since she had already been down there, he said I could bring the paper home to have her sign it.

I just looked at him and then said, "Umm.... she cannot sign a piece of paper. She cannot hold a pen and would not have the foggiest idea of what she is signing." He said, "OK, just have her make a mark and then have two witnesses." I shrugged. "OK. Will do."

I vowed to have the conservatorship ready to go when she turned 18 to avoid precisely this type of thing; but of course I put if off and delayed and it has not yet been filed with the court. This was an excellent impetus to get that done.

As soon as Maggie arrived from school I solemnly put the paper before her and told her that she had to sign it so that she could get Social Security. After she dropped the pen four times I decided we needed to get this on video. It was hard to do because I had to help her with the pen and we were all laughing at the same time, but you will get the gist. We tried to make it as formal as possible.

I'm sure you will agree that Maggie's rights were adequately protected here. And now you can all witness it too.

In addition to being her designated payee, I am also the designated sealer and deliverer. Maggie signed, now it's up to me to seal and deliver it.

Please let this be the end of it.

Thursday, March 8, 2012

Steve's thank you


Steve made a short and lovely speech at Maggie's party. Many people in attendance have mentioned it since then and others want to know what he said. Fortunately, my sister in law had the video camera going so I can share it. These words apply to everyone in Maggie's Village, whether or not you were at her birthday party.  






(I won't know for sure if this worked until after I publish it, so fingers crossed!)

Friday, February 17, 2012

Walking is Hard work!

I took this video of Maggie trying to use her walker. It's the Kidwalk. She loved it at first but we've been having some problems of late. About  1/2 of the time she has been really freaking out when she gets in to it. We can't figure out why, but being in the upright position is very frightening for her.

 Today was better and she was in it for about 15 minutes or more. She seemed like she was gong to freak out, but she didn't. She was smiling and really trying hard to make it work.

This is about three minutes long and you can see how much work she is doing just to be in this position. There's not much walking in this one, we are working on just getting her used to the walker and the upright position itself after those meltdowns.

For those of us who learned the typical way, let me remind you that walking is HARD  WORK! Check out the concentration on this kid.

Maggie is a stud!


.