Magic Fingers

Way back in the 70’s I used to listen to a singer named Steve Goodman. I do not know what ever happened to him, but he wrote some great lyrics. They still pop into my head all these years later.

One of his songs was called something like "the Hotel Room.”Jimmy Buffet did a version of it too, I believe. The line from that song that I remember most is “Magic Fingers and a King Sized Bed.”

Does anyone remember Magic Fingers? It was generally in cheap motel rooms – you put a quarter in and the bed started a “Massage.” Because I come from California, I can speak with some authority when I tell you that "massage" felt a lot like an earthquake. The bed just shook like crazy for about 5 minutes. It was hilarious.

I find myself singing that lyric almost every morning. Maggie’s “Magic fingers” inspire me.
When the night nurse leaves at 6:30 or 7AM, I leave Maggie in bed and walk the nurse to the front door. We have a ridiculous set of antiquated locks on our door and no one can seem to work them except us. (I tell the nurses this way they cannot leave the shift early. Further, for those of you with safety concerns, the back door is in Maggie’s room and it opens right up. If there was an emergency, the nurse could head onto the back deck. As long as she could kick the raccoons out of the way, they would safe and sound.)

When I come back in to Maggie’ room she is always trying to escape from her bed. My husband made Maggie a custom bed to keep her safe. ( pic #1. she's waving at the camera))

Maggie never stops moving. She thrashes about hither and yon. She would fall out of bed 20 times a night. Steve made the bed with side rails that really protects her. She cannot fall out of this as long as it is locked into position.

However, in addition to her movement disorder, Maggie is a persistent kid. She works and works at something until she achieves her goal. Maggie figured out the original locks in about a day and we had to reinforce them with something more difficult. It has been several years now, and she hasn’t undone it yet.

Still she tries and tries. Every morning I return to her room to see this (picture #2) She actually has one of them undone in this picture. I refastened in and went in for a close up.
(pic #3)

That second lock, the hook and eye, is beyond her motor skills. You have to hold the spring and slide it down at the same time you open the hook. Even I have a hard time with it.

However, with her Magic fingers we have to be ever vigilant.

I have a feeling that Steve Goodman's lyrics will stay with me for a long while yet.

sharing wisdom

Recently I was asked to contribute my responses to questions posed in a project called "Sharing Wisdom, " which is part of Partnership for Parents, The wisdom shared is from parents like me who have children with serious illnesses or those bereaved parents whose children have passed away. It is a support network for these parents and it is a privilege to take part in this new project.

The website was just unveiled. You can find it at http://partnershipforparents.org/sharingwisdom/

This project, which is affiliated with the Children's Hospice & Palliative Care Coalition, www.ChildrensHospice.Org; Many consider Palliative care the same thing as hospice. It is not. Hospice is really just a part of palliative care, and in my opinion, palliative care should be part of a plan of care for every patient, and especially every child. Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on relief of the pain and other symptoms of serious illness. The goal is to prevent and ease suffering and to offer patients and their families the best possible quality of life.(I took this definition from http://www.getpalliativecare.org/whatis)

If you're interested, check it out. If you know families or organizations that may benefit from this information, please pass this along.

I love the name "Sharing Wisdom" because those of us in the trenches do garner some wisdom along the way. It may not always feel like wisdom; but when someone is looking for the answers that only I or other parents in my situation have, it sure seems wise then.

Mom, I forgot my Lunch

Maggie left for school this morning as usual. We did the crazy "get out of the house before the bus comes" dance.

For an extra special addition to our routine there was the rain to deal with. Just as we were headed out the back door, the heavens opened up and we were forced to head down the outdoor lift in a downpour. I found an umbrella small enough to fit inside the lift with us and held it over the two of us for the S L O W ride to the ground floor. The elevator's top speed is 9 ft per minute, and it doesn't really go top speed in the pouring rain. Despite the umbrella, we were both pretty wet by the time we got down. Once we were in the garage waiting for the bus the rain let up a bit. Figures.

Maggie left and I came in to get a start on my 1,000 projects that needed attention. About 30 minutes later I was already at the computer working when the nurse called from school. Maggie did not have a feeding tube. The nurse sent home the feeding tube yesterday because it was grungy and I didn't put in a replacement. I had one in my hand before Maggie left, but I got sidetracked and never put in the bag. Also, i didn't realize there was only one tube at school. G R E A T.

This isn't like a kid forgetting their lunch and having to scrounge from the other kids, Maggie doesn't eat anything by mouth. She cannot eat or even have water without the tube. She needs to be fed every 2 hours. I just had to go. I had 40 minutes to get to school with a couple of feeding tubes before her 10:00AM feeding.

Projects were put on hold - again - and I set out across town to Maggie's school. I walked into her classroom holding up the tubes saying "who's hungry." Maggie laughed uproariously. (Gotta love a kid who laughs at her moms' lame jokes).

For those of you wondering, Maggie has a gastrostomy tube, fondly referrd to as her G-tube. There is a device surgically placed in her stomach that lies flat against her belly. Whe we need to feed her, we just pop it open and put the feeding tube in like a key in the lock. You attach a syringe to the tube and pour the food right in. Here are picutres for the curious. They are artfully arranged on top of my checkbook for contrast.

The food she gets is prescribed and is a medically concocted formula that is a perfect nutrition. YUMMY! We feed her about 6 ozs every two hours, and I can do that with my eyes closed. She needs the calories but cannot handle more volume than that at one time. Hence the frequent feeds.

At night she is hooked up to a pump and the food goes in while she's sleeping. We could do that while she is awake, but Maggie LOVES to fiddle with the tube and would unhook it 20 times a day and laugh maniacally at the mess she could make. She does that about twice a week at night as it is. The pump continues to deliver the food, but if Maggie has unhooked the tube it just goes all over the bed. HILARIOUS. Nothing like changing sheets in the middle of the night. Now we have layers of protective stuff on the bed and just peel off the layers as they get wet. Ingenious, I tell you.

So I lost my block of computer time this morning. My projects were delayed. In fact it's now 6:00 PM and I'm just sitting down at the computer again - other than quick emails mid afternoon. Somehow I think nothing much will get done now. Maggie's home and I have to keep jumping up to help the nurse with this or that. (In fact, 13 minutes have elapsed since I started this paragraph.)

Oh well, there's always tomorrow. Unless some other random tube or piece of equipment is missing.

Non-profits

I have not been able to work very much in the past several years. Maggie’s health needs have been very unpredictable. Alternatively, the needs are stable and the nursing care is unpredictable. Either way, it has not been conducive to steady employment. Sometimes I am so busy I don’t know how the days whiz by. Other times I find myself twiddling my thumbs while Maggie is at school. You would think my house would be cleaner, but it is not.

Because of my inability to work and my uncanny ability to avoid household chores, I do a lot of volunteer work. It is good for me and good for the community. I am on the board of a couple of different non-profit corporations which allows me to give something back to the places that have helped Maggie or other kids facing challenges of many kinds.

One of those nonprofits is Advokids (www.advokids.org), which deals with children in the foster care system in California. The work they do is so important. They are teaching foster parents, families, prospective adoptive parents and anyone who will listen, how to make the foster care system work FOR the kids instead getting bogged down systemically and causing further damage to the kids it is supposed to help. Either Advokids helps kids get out of the system faster, either back home or if that’s not possible into a permanent home.

Advokids annual fundraiser is next weekend. It is a Casino night and the event will be a lot of fun. Check it out for yourself. (http://www.advokids.org/advokids_casinonight.html). If anyone out there wants to attend this event, or make a donation or any type, please check it out at the webpage or message me and I will tell you. We will not raise anything near the amount we did last year because of the change in the economy. Certain sponsors just could not come through this year. Nevertheless, Advokids, like many nonprofits, makes a little money go a long way. Some of the staff work for nothing so that more dollars can be used for the work

Of course, most of you are nowhere near here geographically. Even if you cannot do this, I am asking everyone to remember those non-profits out there in your community making things a little better for some segment of the community. In these difficult economic times, their work is even more important. Consider donating what you can, whether it’s time or money. They need all the help they can get. And you will feel good too.

Asthma? ATTACK!

Having a disabled child is difficult every day. Many people assume the emotional burden and sadness make it tough. Those are there, but after a year or so, it wanes and just becomes part of the fabric of your life. They rise up periodically, especially in times of crisis. For the most part, though, the day-to –day difficulties are much more practical than emotional.

I deal with several government agencies, three different medical supply companies, the pharmacy, the nurses, dozens of doctors, the school district, the bus company, and the health insurance. It is not every single one every day, but at least a couple every day, and more often three or four. I have it pretty much down to a science. If everyone does his or her job, things flow smoothly. (That is a BIG if) It is a ton of work and it takes a ton of time. I do not mind doing it, but I go a little crazy when one of these multiple entities does something stupid. Saturday was one of those days.

Saturday afternoon Maggie and I were dancing in the living room to the music we have amassed for her birthday party. We were having fun and laughing. Then the health insurance company called. That is unusual for a Saturday. The guy asked to speak with Maggie and I simply said, “I’m her mother, can I help you?” His perky reply, “Oh, right, she’s a minor” [I didn’t even bother to tell him she was also non-verbal]

He was calling to tell us that we qualified for a FREE service from the insurance company. I stopped him and asked if this was the case management situation. I would welcome that if it worked, but each of our health insurers over the years has appointed a case manager that either doesn’t manage, is unreachable, or, in one case, repeatedly told me to sit down and have a cup of tea because I ‘had to take care of mom, too’. I do not want TEA; I want approval for a procedure.

He assured me it was not that, but thought this was something that could really help us. Ok, I’m listening. He said, with a voice filled with pity and concern,” I understand your daughter was diagnosed with asthma.” (His voice turned very serious as he emphasized the word “asthma”)

“Asthma? You are calling me about asthma? Are you kidding me?”

For the record, you should be aware that Maggie does not have asthma in the conventional sense. That can be life threatening and scary and I am not in any way diminishing the potential seriousness of that condition. Technically, Maggie may be considered asthmatic, she is on multiple respiratory drugs that are often used for asthma; but it is just a small part of what we deal with hundreds of times every day.

The poor guy was obviously taken aback at my reaction, and I am sure he thought I was a crazy unconcerned mother. He was half-right. His voice was a bit chiding now: "Ma’am we have a program that will help your daughter care for her asthma.”

I was exasperated, but not toward him. I simply said, “Look. My daughter has about 500 things wrong with her and the asthma is number 497. We have that well under control. My daughter needs total care 24 hours a day. Do you have any programs for cerebral palsy, hydrocephalus, getting tracheostomy supplies, or feeding tubes or catheters, or nursing services?

Ok, maybe a little toward him. Please keep in mind, he called me, to push a product, I did not call him seeking assistance.

There was a pause. The guy asked if she was under the care of a nurse and I said yes, all day and all night every day. Of course, the insurance company does not cover that, so it’s as though it doesn’t exist in their world. He said he would take her name off the list so that I do not receive several more calls about it. That is a good thing, unless the other conditions she has are handled through other offices.

I hung up the phone and just said aloud “That is ridiculous.” My husband asked what happened and when I told him he laughed and said, “Poor guy, he never had a chance.”

I did not find that as amusing as my husband did.

I am sure Maggie’s meds triggered her eligibility for this program and no one ever considered anything else about her. That’s par for the course. Maggie’s complicated care is tangled in this web system of care; she has many people monitoring her from every angle. However, no one knows the whole picture. Except me. That bugs me – a lot. Especially when the insurance company, which is footing the bill for many of these things, seemingly uses an alphabet soup approach to case management. Asthma is just the first of Maggie’s condition alphabetically. I guess they don’t care about her apnea. Next week they’ll call about her bladder infections.

I’ll let my husband answer the phone and Maggie and I will keep dancing.

Choose Wisely*

It seems there has been a lot of focus on the word “choice” in the past several years. It seems everyone uses that as an explanation or excuse for everything. “Well, you made that choice, now you have to live with the consequences.” (aka, you made your bed, now lie in it) Or, simply: “that’s your choice.”

In short we are saying to other: I respect your right to make a choice, even if I disagree with it.* But often it doesn’t sound like respect at all.

In my opinion, this is not an embracing philosophy, but often a way to distance yourself from another person. To suggest one deserves a situation because they chose it is often mean spirited and dismissive. It negates the effect of outside forces and fails to acknowledge that one’s circumstances may limit the amount of choices available. If circumstances leave you with three bad choices, choosing the least of three evils is the best thing you can do, even if it is still “evil”.

Don’t get me wrong. It is important to teach our children to make the right choices for their life and important for us to be responsible in our decision making. It is important to teach that actions have consequences; and we have to take care when we take action.

However, it is also important to teach that sometimes life throws you a curve. Sometimes all you can do is stand there and take your swings. Not everything is done by choice. Things happen. As the commercial says, “Life comes at you fast.” We have to have tools for that as well.

I certainly did not choose to have a disabled child, or to lead the life I’m leading – but I did choose to make the best of it. Making the best of it severely curtails choices in every other area of my life. I’m ok with that; often others are not. I guess that’s their choice. (was that dismissive? Maybe so.)

We have to recognize that people in different circumstances have different menus from which to choose. The circumstances don’t have to be as dramatic as mine. Financial, geographical, family, health, and many other concerns can have different effects on us. Those effects can be provide or limit opportunities and choices. It is important to remember that because when you do, you validate the person you are talking to and the life they lead. Not the life they chose, not the life you think they should have chosen, or that you would choose, but the life they lead.

Recently a friend told me how he admired my family and what we have done for Maggie. This generally makes me very uncomfortable. Maggie is my daughter and I care for her. It’s as simple as that. Her care is complicated, but being a mother is not. I thanked him and said, “well, that’s nice, but it’s not like we had a choice.” I’ve said that to many people and that usually stops things before they get mushy. But not this time. Not with this guy.

He looked me in the eye and said, “But you did have a choice and you made it a long time ago and I’ve seen many families who made the other choice.” It was understood that the “other choice” is to institutionalize your child or reject her outright. (He’s a doctor, so he has seen the other choice.) I had to think about that. Ours was never a conscious choice; it was instinct. We are parents and we have to care for our children. The concept that this is really a choice was foreign to me. It still is.

But my point is this: He took this concept of “Choice” and, rather than use it to distance himself from my situation, he put it in a positive light. He embraced the different circumstances of our lives and used them to tell me that he understood and appreciated me. I’m still not sure I agree that this was a choice, but I know this: the way he “chose” to say this was perhaps the greatest compliment I’ve received in my life.

* (I’m not talking about Pro-Choice or Pro-Life)

Pipe Down

Maggie’s class is very small. There are only four full time students assigned to the class. Other kids come in for part of the day, but generally, it is intimate. Lately it has been only three kids as one is still recovering from surgery. She will be back next week, though. Until then it is just Maggie and the boys, “Y’ and “G.” All four of the kids are in wheelchairs so there is a lot of equipment in the room. In addition, the class focuses on augmentative communication and all the full time students are non-verbal. Maggie has additional medical challenges that the other kids do not have to deal with, but she has an advantage over the two boys in a different way. She comes from a family where English is the first language.

Imagine if you can, a child trying to overcome his physical handicaps and inability to speak by using augmentative communication – and having that “augmentative communication” taught in a language you do not hear at home. It is very difficult. “Y” is Chinese and his family does not speak English at all. “G”’s family is Spanish speaking. They are able to speak English, but do not do so at home. That puts them at a tremendous disadvantage trying to learn a communication device that is speaking a different language.

It is particularly difficult for “Y” who only recently joined the class. He is still getting familiar with the concept of being able to communicate. It is frustrating for him; and when he’s frustrated, he tends to scream. Then when he gets the feedback for screaming, he screams again. It can be trying for everyone.

The other day Maggie and I were in the kitchen and she was jabbering away on her communication device. It is normal enough for us that I was only half paying attention to her. I was just responding to what I heard without really listening. (Oh, come on now, other mothers do the same thing). I realized after a bit I didn’t know what she was saying. When I finally stopped to really listen I heard something that sounded like “Moo CHO.” I went over to her talker to see which button she was hitting, but she had moved off that page. I asked her to go back and press the “Moo CHO” button again. She started navigating back to that page.

I figured it was either a mistake or she was saying “mucho” in Spanish. Keep in mind, the communication device speaks phonetically and it could have just been reading it wrong. Often when I am programming it, I have to misspell words so that they will be pronounced correctly. (For instance: “let’s read a book” comes out "let’s red a book" so I spell it “reed”)

She found the button and hit it again. Apparently, Maggie also speaks Cantonese. Moo CHO means stop screaming. The whole read out is “Stop screaming. Moo CHO.” I was very impressed. I asked Maggie is she says that to “Y” and she said yes. I asked does he still scream a lot and she just hit “Moo CHO” and started laughing.

Pretty cool. I've always said Maggie was the one child who cannot talk, but can still "talk back," Now I have to add that she cannot speak, but can bark orders in several languages.

She gets that from me.

Also, Maggie received a new jean jacket from her Aunt Dianne yesterday. It just arrived in the mail for no particular reason. We’ll call it an early birthday present. She looked pretty cool heading off to school this morning.

Party plans

Maggie's birthday is approaching. She will be 15 on March 3.

Many parents of disabled children will tell you that the birthday is hard. I am one of them.They are a reminder of many things. The day she was born was not a happy day. And milestones marking that day are likewise not happy.

It was more difficult when she was younger because parents use birthdays as developmental milestones as well. "He was walking before his first birthday" "She was speaking in full sentences by 2" "He could read before 5,"etc etc. When your child isn't hitting any of those milestones, reminders are hard.

By age 15 those measurements are long behind us. In fact there are some blessings to Maggie not being a typical teenager. I NEVER get attitude. Maggie has two speeds - happy and quiet. She's not moody or sad. If something hurts she cries and she occasionally gets mad, but generally it's either because she's tired or frustrated because she cannot make her wants understood. There's no drama - well at least not teenage drama. (WE do have a lot of medical drama).

This year we are going to party. We considered various options for her birthday. Bowling is fun, but the only place with the adapted bowling doesn't have parking and it's a hassle to get to. So that's out. Other options were likewise unworkable. We decided to go with the basic, party at the house. We have a lift so the wheelchairs can get in easily. It will be a dancing and pizza party. Maggie's friends from school can come over and we'll have dance music for them. (I am consulting with my 13 year old niece for the right mix of music) I can burn cd's for the kids as party favors. Steve can make his pizza dough and the kids can make their own pizzas. There could be as many as five wheelchairs in here, so we will have to move the furniture, but we should do that anyway for a dance party, right?

It will actually be a developmentally appropriate party - 13-15 year olds eating pizza and listening to music.

Hmmmm. Everything evens out eventually.

Musical suggestions welcome.

Today is Valentine's Day. We don't do much on this day except enjoy each other, which is perfect for me. Right now both Steve and Maggie are sound asleep. It's quiet and no one needs anything. That's enjoyable too.

My sister invited us to dinner tonight with her family, my mom, another sister and her father in law. That will be 10 if we go. I said yes but now I'm having second thoughts about taking Maggie out. I'll decide later today. There just so much involved in taking her out. I don't mean the physical effort it takes - that's always present, but manageable. It's the spectacle of it all. Sometimes I just don't want to deal with the stares of others. I really just ignore people, but it does take some emotional preparation that I'm not sure I can muster today. Pretending you don't notice takes effort.

Of course Maggie would have a GREAT time, so maybe that should be the deciding factor.

And I don't have to cook.

We'll probably go.

I wish everyone a Happy Valentine's Day. I hope everyone gets a minute to think of someone they love.

Curl Girl

I live on the West side of San Francisco. The Pacific Ocean is about 3 miles straight down the street. In many coast cities or communities, living near the water is fancy schmancy. Not in SF. This part of town is foggy and cold a lot of the time. The water is freezing and very few people swim in the Ocean. There are hearty souls that swim in the SF Bay every day, and my dad was their king. The bay has tough tides but doesn't have the crazy undertow and the crashing surf that the ocean has. Ocean Beach (clever name, I know) is generally empty save for a few dogwalkers and other scattered individuals.

But there are surfers. These folk have their wetsuits to protect them (somewhat) from the cold and their bravado to protect them from the rocks, undertow and occasional great white shark. (Ok, hardly ever with the sharks.)

Maggie has become something of a connoisseur of the waves and the surfing conditions. The bus picks Maggie up about 8:20 or so and then heads west to get another student. The driver then takes the Great Highway, which runs right along the coast, to get to the school. He listens to KPIG on the radio which has a feature "Girl in the Curl" to give the surf report. The bus driver has the kids confirm whether or not her report of the conditions is correct.

I didn't know any of this until the other day when the bus was a little late. the driver was still loading Maggie when the kids started yelling It's the Girl in the Curl! Maggie started twisting her neck to see the kids in the bus and was laughing her head off.

It's good to know she's getting an education ON THE WAY to school. That's a bonus.

Tomorrow is Valentine's Day, of course. But that's Saturday, so all the Valentine stuff had to go to school today. Maggie was dressed for the part and had her valentines all ready for all her pals and teachers. She was excited and Happy.

If the waves are good, this will be a perfect day! Gnarly dude!

Maggie says Happy Valentine's Day to everyone!!

Resources

The internet is an amazing thing. We have all just accepted this as a resource tool, but there are times when you have to just sit back in wonder at the information at our fingertips. I am sitting on my couch in front of the drafty windows, but I’m not getting up because I keep finding more and more information. I can’t even remember what I started looking for, but I’m way into surf mode, now.

As a parent of a disabled child, the internet has allowed for parents to connect with one another far easier than in the past. If you or your child have a rare syndrome or disability, you can find someone across the street, country, or across the world who is dealing with the same issue. It is very helpful to know you are not alone out there.

Because of writing about Maggie I have connected with a couple of other resources. I found some and Some found me. This is due in part to a “blog carnival”. The way I understand it a blog carnival is like a magazine or maybe a bulletin board highlighting various blogs on a specific topic. This is not just for disability, the disability blog carnival is one of hundreds there. There is everything from taxes to traveling to Europe on a budget. If there is a topic you are interested in go to http://blogcarnival.com/.

I’ve really only looked at the disability blog carnival. The way it works is one blogger hosts it each month and other bloggers submit entries of their own or someone else’s to be highlighted. This months is found at River of Jordan: Disability Blog Carnival #53: Pot Luck and there is a link to a post I did last month. It’s a wonderful way to connect with other families dealing with similar issues.

Another resource is www.5minutesforspecialneeds.com and the other “5 minute for” sister blogs they have. Again, this is a community effort to share information and experiences on given topics. I know there are thousands more out there. If people have favorites, feel free to post them in the comments.

Loading Zone

A little snafu getting on the bus today. I’m not sure what happened, but just as the lift started ascending Maggie’s face changed. The nurse and I both saw it. The driver stopped the lift so we could figure out what was wrong. Maggie’s foot was caught under a portion of her chair and her leg was twisted. I straightened it out and she was clearly in pain. She started crying big crocodile tears.

The nurse commented that she had ever seen Maggie cry. It is pretty rare. She is one tough chick. SO for something to bring her to tears, it had to be pretty painful. The driver was concerned that he had done something (he did NOT – it was a position she got herself into while her mother wasn’t paying attention). I think her hip was affected by the position of her leg and when I straightened it out it really hurt.

We made sure she was ok and they resumed loading her onto the bus. The other two boys on the bus were very concerned about Maggie because she was crying and not responding to their questions. She ALWAYS answers yes and no using her own signs. I could hear them firing questions at her and climbed onto the bus to make sure she should go to school. Just as I did, one of the boys said, “Maggie getting on the bus is a lot of DANGER!” This is something the bus driver yells out every morning as the lift is coming down just to entertain Maggie. (and it always does!) This has been going on every school day for months. (see Maggie World: Danger Will Robinson!)

Maggie started laughing through her tears and off they went.

This picture is not from today, but this is Dave, the driver, telling her how "dangerous" the lift can be. Maggie lives for that every morning. It is fitting that one of the kids knew to use that to make her laugh.

All's quiet on the western front.

Transitions

Maggie's IEP is tomorrow. For those of you lucky enough not to know anything about the world of special Ed, the IEP is the Individual Education Program that every special ed student has to have every single year. The IEP meeting includes the parent, teachers, therapists and any other specialists sitting down together to hammer out a program for the next year. It is supposed to be individual, but in reality it's making an existing program within a district work for a specific child's disabilities.

For many parents and school district representatives, this is a showdown. At the extreme level, Parents come in ready to demand exactly what their kid needs and never mind the cost or the needs of any other kids; and districts come in with "this is the program, and we will not accommodate one single thing to meet the needs of your child." Low vision, sorry, no seats in the front. The extremes rarely happen. I've seen it, mind you, but it's rare. Generally a consensus is reached somewhere in the middle.

Maggie's IEP meetings have always been cordial and without drama. That works perfectly for me. It may be easier for me because Maggie's needs are so obvious to everyone. Sometimes the kids who are high functioning, but still need help are more likely to fall through the cracks. Maggie is pretty involved and her needs are profound. Another factor is Maggie's personality. She is also very responsive and very smart and the teachers and therapists love to work with her. That's just luck. Other kids with her extensive needs may be unable to demonstrate their knowledge as well as she can and therefore getting that extra push from teachers etc might be a bit more difficult. Teachers, like everyone else, want to know that their work is making a difference and they can see that with Maggie.

The meeting itself is trying. It takes about three hours (partly because of all the people involved in Maggie's program). If this were in the private sector it would take about 45 minutes. That drives me crazy, but it's just a little something. Because Maggie will go to high school next year I realized I should at least look at the classroom they want her in. I was delighted to learn that she has a spot at Mission High, where her specialized program continues. Of course I was going solely on rumor and reputation and realized I should have a look see for myself. I just returned form there. It is perfect. There will be six kids in the class next year, including Maggie, and she already knows three of them. Woot! The transition will be as smooth as possible.

Of course I saw the vending machine behind bars and noticed the huge hallways and the very large students and felt a lump in my throat. But it is time and it is the right place. I showed up without an appointment and asked at the office if I could check it out. The teacher agreed, which was very kind of her. That made a great impression on me too.

My brother is a student teacher at Mission. Hopefully, budgets willing, he will be a teacher there next year. Maggie won't care, mind you. She'll be too busy catching up with her old pals and making new friends. But what a gift that would be for a worried mom knowing that Maggie's cool uncle would be in the building.

Transfer, please

Generally getting Maggie in and out of the wheelchair is a boring and slightly unpleasant task. She weighs about 65 lbs, which is not THAT heavy (unless you do it 50 times a day). The easiest transfers are a chore, and the not so easy ones are very hard on my back, shoulders, hips etc. They are also hard on my nerves.

Sometimes Maggie’s muscle tone is very soft or loose and it is as simple as scooping her up and placing her in the chair. Those transfers are the easiest. It’s just the lifting and buckling of all the straps. (There are 7) Other times she is stiff as a board and getting her into a seated position is very difficult. In order to fit in the seat properly, her butt has to be all the way back. This is nearly impossible to achieve when she is refusing/unable to bend at the hips. I use refusing/unable on purpose. Occasionally she just does not want to be in the chair and will stay as stiff as possible, or she is tight just because she needs a good stretch; but most times, she is stiff because she is excited or laughing very hard. When she gets like that she cannot always relax her muscles and is unable to assist me. These are much more difficult and require straining and repositioning in addition to the lifting and buckling. If she is also making me laugh, it is even harder. The breakdown of easy and difficult is about 70/30- with 70 being more difficult.

Actually, that’s not true. It should be more like 68/28 because there is another 4 or 5% of the time when putting Maggie in the wheelchair is adventurous. Adventure can be perilous, entertaining, or exciting.

A week or so ago I decided to carry Maggie from her room to the front room to her waiting wheelchair. Maneuvering the wheelchair is difficult in this small space and sometimes it is easier to carry Maggie to the chair. Once I have lifted her, carrying her the 20 feet is not that big of a deal (but 100 feet might be). My sister was visiting and was trying to be helpful. As I approached, with Maggie in my arms she moved the wheelchair out of the way. I said, “Don’t. Stop” meaning: “don’t do that, stop what you are doing.” She thought I was going to put Maggie on the floor and assumed I was unable to speak because I was straining under Maggie’s weight. She heard it as “good, don’t stop.” As I moved closer, she moved it farther away. I realized what she was doing and said clearly, “I need to put her in the chair.” She was flummoxed but quickly positioned the chair properly and held it while I put Maggie in. That was like a keystone cop routine that had all three of us laughing.

This morning was not quite as funny. Steve left early this morning for a court appearance in Vallejo. I guess I have grown accustomed to having him around in the morning and I skipped a few steps in the preparation. I did 999 of the 1000 things to get Maggie ready and moved her to the chair. She was excited because she was going to school; that means she was squirming and laughing thus making this transfer in the more difficult category.

Sadly, the one thing I forgot to do was to put the brake on the chair before I transferred her. As Maggie squirmed, the chair kept moving back an inch or so. That made her laugh and jump more and the chair would move again. Remember her 65 pound, squirming, laughing body is in my arms. I’m trying to hit a moving target with a moving target. In addition, all of this is taking place in her very small bedroom with limited maneuverability. I thought we were both going over. Images of firefighters untangling us were dancing in my head. Finally, I just slid my foot under the front wheel of the chair to make it stop moving. Maggie was laughing so hard I thought she would stop breathing. Once I got her butt into place I laughed with her, but for a minute there…

I mentioned thatI was interviewed by a website. The brief interview ran this morning. It's probably nothing you don't already know if you read this blog regularly, but if you're interested, check it out.

http://www.5minutesforspecialneeds.com/878/878/

have a good Sunday everyone.

picture perfect day

The visit to Chinatown was fun. The rain held back until the kids were back in the bus heading back to school. We just visited the Chinese cultural center and had excellent dim sum in a very crowded restaurant. They did not know what to make of all those wheelchairs, but they were gracious and helpful. (Arrangements had been made ahead of time)

I was in the car driving through Chinatown. The light turned red and I was the first care waiting at the light. I was looking up Grant Ave at California street admiring the decorations for the Chinese New Year when this appeared:

I grabbed the camera and snapped this through the window of the van. Then it moved (you can see it to the right) and I saw this:
Sometimes I feel like I live in a postcard.

Field trips and plugs

Today is another field trip for Maggie’s class. They are heading to Chinatown to shop in the outdoor bazaar and then have lunch in one of the restaurants. Maggie will not be able to eat the food; she cannot take anything by mouth everything is through the tube. You might think this is sad for her, but it is not. Maggie loves going into restaurants. The hustle and bustle, and the noise are hugely entertaining. If, by chance, someone drops something: BONUS! Maggie will jump at the loud noise, wait a moment to process it and then start laughing.

It is a good thing she likes restaurants because the class may have to spend most of their day inside. It is raining pretty hard right now, so the outdoor bazaar may be a bust. Too bad, I think Maggie was planning to shop for my birthday present there. I am not sure if I can survive the day without one of the cool drums to ward off evil spirits from last year.

This is the end of the Chinese New Year celebration that started two weeks ago. The big parade is tomorrow night. We may go for a little while if it is not raining. The problem is the firecrackers. Those will freak Maggie out. Some sounds are good, other are not. I cannot explain it, but I can predict it.

Picture a little baby startling at the slightest noise. That is Maggie, and many other kids with cerebral palsy. It is just a reflex that many of us outgrow, but some do not. I think part of it is the time to process the noise. Firecrackers are too rapid fire; there is no time in between to decide if this noise is ok or not. Maggie also likely takes her cues from the reactions of others and if folks are wincing and covering their ears, she will freak out a little. If, on the other hand, everyone looks surprised and happy, she will laugh. She wants to please, but if it really startles her, she gets very frightened and cries. Then it is hard to calm her down. That is no good.

I plan to head to Chinatown to join the class later. The teacher always invites me along on field trips and I go when I can. Today is my birthday, so I can do anything I want. I think I will walk in the rain with Maggie and her classmates. The hubby works downtown not too far from Chinatown. He may walk over and join us for lunch too. We will turn a rainy Friday into a celebration.

Other news: Two plugs

I was interviewed recently by a website entitled 5 Minutes for Special Needs. (www.5minutesforspecialneeds.com) the interview runs on Sunday Feb 8th. Check it out. I did not know about this website until they contacted me, but I have visited a lot since then. Several parents facing challenges like mine author the website. There is a lot of good information and insight over there.

Tomorrow night is the 60th Anniversary Gala for the Blind Babies Foundation. This wonderful organization helped Maggie and me in her early years. It will always have a special place in my heart. The local news did a story on it the other night, which is here http://abclocal.go.com/kgo/story?section=news/assignment_7&id=6639850
Check it out. The woman in the video is Jeri Hart. She was Maggie’s home counselor too. She was the very first person in Maggie’s life who looked at Maggie for what she could DO instead of what she could not. Jeri instilled this attitude in me. Maggie can do anything she wants.
I am eternally thankful for that.

Have a good weekend all.

Step Away from the Edge, Ma'am

I talked to Maggie’s teacher yesterday about this and that. In the course of the conversation, he told me that Maggie was being measured for her cap and gown for graduation. She’s the only 8th grader in her class, so she’s the only one from that room graduating. I will receive information about options for ordering. Will it be cap and gown or just gown? If cap, do we want it with or without tassle, etc.

I told him that the cap would be a complete waste of money for her because it will never work with the headrest on her wheelchair and, in any event, Maggie will be tossing that cap long before they ever walk (or roll) down the aisle. But I still want it to get pictures. Joe reminded me that he and his staff do have a bit of experience with kids in wheelchairs who don’t like to wear hats. Right, I said, and then there’s Maggie. We both laughed. [She flings things far across the room.]

This conversation took place while I was parking to go to an appointment. I hung up the phone and walked down the street toward my destination. I felt a smile growing across my face and had to stop and let the whole feeling wash over me. Maggie is graduating and heading to high school. Wow!

Milestones are exciting for every parent, in fact, probably more exciting than they are for the kids. But milestones for Maggie pack an especially sweet punch. She has been through so much. A lot of her life has been on the edge of the precipice. But we have pulled back from that edge lately. She is stable and healthy.

And I don’t think I appreciated that fully until that moment on the street all by myself.
The maintenance of her health is non stop and all encompassing. Her care requires 24 hour vigilance. But we are doing it, she is thriving. And that is precisely why we do it.

Mark your calendars. There will be a graduation party.

Gone but not forgotten

When I first started this blog in August 2008, I wrote about listing our van for sale. It was sentimental as I recounted some good memories we had from owning and using this vehicle for 12 years. I felt that way then. The sentiment dimmed over the next five months when no one was interested in buying this wonderful, memory filled vehicle. The car was in excellent shape and had relatively low miles (103K) for a car of its age. There was lots of interest, but we never made the sale.

Part of the problem was the wheelchair lift. It worked fine and should have been a tremendous asset. However, we never lowered the floor of the van. In order to ride in the wheelchair in the car, a person would have to be shorter than Maggie is. (Who is less than 5’). It was a bit of an albatross. One man was interested for his very small elderly mother. It was close, but no cigar. When he did not buy it, I knew we were in trouble. We were not reaching the wider audience who could get the value of this vehicle.

When Tim was home for Christmas, he used it a little bit. However, an 18 year old reuniting with his friends who have scattered to various colleges just does not want to show up in a 13-year-old minivan with a wheel chair lift. Hurts the image. Seriously.

I used it as much as possible, but only when Maggie was not with me. She is too tall for it now and the wheelchair locking system in that van was never fitted to her new chair. I don’t really drive around that much without her.

A week or so ago the battery died. I just left it where it was parked and did not deal with it again until street cleaning day. The City of San Francisco is very wise to have street cleaning day – the streets are cleaned of litter as well as cars that owners are tired of dealing with. We jumped it and drove it around to charge it and then put it in the driveway. The next morning, it was dead again. It needed a new battery. Great.

I decided this new battery was the final straw and started lobbying to donate it. An agency that deals with disabled individuals could put it to good use. We could take a write off and do something good at the same time. My husband correctly pointed out that the tax write off is worth much less than the cash we could get in a sale of the car. True, I countered, but if no one is buying it and actually GIVING us the cash, the write off is worth a lot more. And, now we had to spend money on a new battery, just so that we could have to park it and move it to avoid tickets. And, we could remove it from the insurance. And. And. And. It is a win win win.
He agreed. I went online and found an agency that I like that accepts these donated cars. They will be able to utilize the real value of this car, whether they keep it themselves or sell it. I was delighted. They came yesterday, handed me the paperwork, hooked the car up to the tow truck and drove away. I felt accomplished.

I looked at the papers in my hand; then I looked up and watched the car being towed away.

And I felt sentimental all over again.

Memories flooded over me as I stood in the driveway watching it turn the corner. I saw images of trips to soccer games, vacations, doctor’s visits, teaching the boys to drive etc etc. It was an ignominious end to a reliable vehicle that I drove for over 12 years.

I hope it finds a new happy home.

Working for a Living

Ok, ok, here is a new post. I took a couple of days off from this because of other obligations. Once in a great while my work requires me to be elsewhere.

Because of both the complexity and unpredictability of Maggie’s care, I have been working at home since she was born. Occasionally in these 15 years, I have tried to work outside the house, but it never lasts. Responding to constant medical emergencies wears thin for employers. Initially they are very understanding and concerned, but when it happens repeatedly – or I just disappear for a couple of weeks for an extended hospital stay, it simply interferes with running a business. I get that.

While I am very very lucky to be in a position to work from home, and to take the huge financial hit that came with that, I miss working. I am sure I would be complaining mightily if I had to get to the office every day, but from where I sit right now, that would be nice. I am still involved in a few things and I was in court a couple of times in the past few weeks. It felt good.

I miss practicing law. I do not miss the tedium of writing and rewriting briefs or poring through huge stacks of documents; but I miss the intellectual challenges of some of the projects, and I miss the feeling you get when you win a tough case. I also miss the camaraderie of the office and being part of the pulse of downtown.

My advocacy skills help me with Maggie, of course. I know how to present things to agencies and insurers to get things done. It’s not that Maggie gets anything more than she should, but knowing how to work the system has definitely helped her (and me) get the available help. In addition, I have put those skills to use for many other families as well.

I am glad to be able to help, but I do not want to build a business doing this. There are a couple of reasons for that The first is, I can’t bring myself to charge most people for my services but can’t take on their problems without compensation – otherwise I’ve just added their problems to my own. However, even more than the money is the lack of any break from my issues with Maggie. Dealing with the same issues at work that I do at home would drive me ‘round the bend. When you are in the same boat as your client, it is very difficult NOT to get emotionally involved. And that can compromise a lawyer’s ability to advocate appropriately.

I need some balance.

I do a lot of volunteer work. I work with a couple of different non-profits to help kids. It is a perfect way to use my lawyer skills and help people without taking on another family’s sadness or frustration with the system. Right now, I am involved with two organizations.
One is Advokids (www.advokids.org) which assists children in the foster care system. This organization is trying to change a broken system. That means fighting against those who are entrenched in the system. The secret is to keep the focus on the kids the system is supposed to serve instead of the adults who run it. This is a wonderful organization run by all volunteers. There’s a casino night fundraiser scheduled for March 7. Please check out the invitation on the Advokids website. It is a fun night and a great cause.

The other is Friends of CCS (California Children’s services). We are just getting underway; in fact, our incorporation papers are pending, and may be complete by now. CCS is a governmental entity so the services are pretty bare bones, and now with the budget mess, they are being cut drastically. The therapists end up paying for a lot of stuff out of their own pockets but they cannot do it alone. The non-profit “friends of” will raise money to support the work of the physical and occupational therapists that work with Maggie and other kids with physical disabilities.

I do other volunteer things as well. I love the opportunity to speak to classes or groups or be part of a panel addressing the issues families face raising disabled children. I used do that all the time, but those opportunities have sort of dried up. Maybe everyone has heard my story already!

The volunteer work is good for me. It provides some perspective on the world and some insight into how my problems fit in the whole cosmic scheme of things. I still miss being a lawyer, but I do get some balance in my life.