Farther Down the Road

I recently learned about a little boy who has some of the same issues Maggie does. His family members are trying to connect us. I hope I can provide a little guidance or reassurance to this mom. It’s a hard road, especially in the beginning, and it would be great to extend a hand to help someone navigate the steepest parts – but only if she wants it.

Many a hand was offered to me along the way. The problem is, though they were all well meaning, not all of those hands were helpful. When I turned to someone who did not help, it made things more difficult. Often it was easier to go it alone than to find out I grabbed onto the wrong hand. Of course that means sometimes I passed up hands that really would have been helpful, and slogged through on my own unnecessarily. Eventually you find out those who really do have helpful hands outstretched are always there. If you miss them the first time, they will happily reach out to you again. And one day the sun rises and you realize maybe you don’t need the help, even the good help, because you are ON IT and know what you are doing.

Thinking about this boy makes me remember Maggie’s first two years. They were hell. We didn’t know if she was going to survive. She was in the hospital more than she was out. I had to learn a new vocabulary and medical procedures, and deal with the emotional, financial, social and other effects for me and the rest of the family. Also, I still had to deal with the boys; Eddie and Tim were 5 and 3 when Maggie was born. Looking back now, I realize those boys kept my feet on the ground and probably kept me sane.

Thinking about this also makes me appreciate how far she has come from then and, despite the setbacks and drama, what an amazing life she leads and the amazing life I have led because of her.

Young Lady, you are NOT wearing that

I have described the hectic nature of the mornings around here. I am so lucky to have the nurse here to get Maggie dressed and ready. I don’t lay out Maggie’s clothes, because I don’t really care what she wears, as long as she looks clean and neat. It may be time to switch that and decide myself what clothes she will wear. I am aware that it is important that she looks good and decently put together. People are already staring, so a touch of class is important. I did have to balk this morning when I saw Maggie sitting in her chair in THIS.

If you can’t see well, try to picture some green pants with small shamrocks all over them – Target specials for St. Patrick’s day (which was three months ago) paired with a pink and yellow paisley shirt that looks like it was designed by peter max. Ay yi yi. She was already in the chair when I caught the ensemble, I realized she was wearing that shirt, but she wasn’t all the way dressed when I said good morning. It was too involved to change her pants, I would have to unstrap her and lift her out of the chair and onto the bed and then reverse the whole thing. Instead I just left her in the chair and changed her shirt. Still not quite “classy” but at least a step in the right direction.

In another mismatched outfit – but this at the end of the day getting ready for bed Maggie sat with Tim in the big chair. He put his Irish hat on her and she loved it. I just had to add these. She stayed cool for about a minute than just cracked up.

Is there a problem here?

A while back, someone asked how Maggie tells me if there is a problem or if something is hurting her. Specifically they wanted to know if her talker had a button or buttons for that. The answer is yes, but no. (Don’t you hate that?) The talker does have several buttons to describe various problems, but that is not how Maggie tells me. The way she communicates these issues depends on the specific problem. Physical problems, like pain, are communicated differently than physical needs such as hunger or environmental and entertainment needs. Technical issues with the talker present another challenge entirely.
If Maggie has a physical problem, I just know. I cannot really explain it, any more than any other mom can explain why they understand the different cries of their newborns. You just know. It might take a while for me to understand exactly what the physical problem is, but I am like a detective zeroing in until I figure it out. It is not just mother’s intuition, though. Anyone who spends any time with Maggie can read her cues easily when it is a physical problem. Her entire affect changes. I may be faster at figuring out the precise problem, but she does manage to communicate the existence of a problem.
For physical needs, she tends to use the communication device. She has only recently started using her “I’m hungry” button, which she follows up with “Can I have breakfast/lunch/dinner/snack.” That amazes me because she always uses the right meal that corresponds with the time of day. Remember, she eats exactly the same thing every two hours, so there is no reason to differentiate, but she has figured that out with her own innate sense of time. Her newest trick is the “I have to go to the bathroom” when she needs a diaper. That is very important and it will help her as an adult. For now, it is a way to communicate and a way to get attention. We can finish a diapering session and just get her back in the chair and strapped in and she will hit “I have to go to the bathroom”. I just look and say “NO! You don’t.” That is cause for uproarious laughter by her.
It is more difficult when the problem is technical rather than physical. For example, her communication device can be glitchy, programmed incorrectly or just have a loose connection causing it to work improperly. She cannot use it to communicate those problems if it is not working. For one reason or another, I may not realize there is a problem right away. In those cases, Maggie starts smashing the buttons and pounding on the tray until she gets my attention. Inevitably I will say,” Is there a problem here?” If I catch on soon enough she will smile, but if it has taken too long to respond, she just looks wild-eyed and keeps slamming the tray. I say,” hold up there Tiger, I can fix this.”
If she doesn’t like the music we are listening to or the book we are reading, she just slams her fist down – her sign for “NO!” over and over and over again. Generally, we will let her do this about ten times before we innocently say, “Oh, I’m sorry do you want something else?” That is another cause for laughter. If she doesn’t cut it out, I tell her to stop shouting and let us fix things. If it is bad enough I walk away, I do not want to reward that behavior. I figure slamming her fist down loudly is the equivalent of another kid screaming to get what she wants. When she stops, I fix it.
I am glad that she uses both high and low tech to convey her message. If she is completely technology dependent, she is out of luck when it is on the fritz, or mom forgets to charge it or some such thing. Her yes/no signs, affect, temper and laughter are always present and never need charging.

Happy Father's Day

There are so many dads in our life that we have to acknowledge today. First of all, of course is the Dad in this house. Steve is a model father, setting an example of responsibility, good humor, and fun. He builds furniture, grows vegetables, rides his bike to work, works his tail off, and practices fly casting . He is never bored because he has a thousand hobbies, but his greatest joy is the kids. As soon as he walks in the door Maggie says “DAD, Book!” because she knows he will not only read her a book, but will do it with enthusiasm using several different voices.

In addition, there are the dads in the extended family. Interestingly all of our siblings (Steve’s and mine) are parents and all still married their original spouses. I could probably do the math to figure out the chances of that, but I am sure it is rare that nine out of nine marriages are going strong. One math problem within my ability is to note that 50% of the credit for that is because of the dads in those families. All are devoted family men who have earned a great father’s day. So, to Ed, Jim, Channing, Pete, Vince, Pat, Larry and Cliff, Happy Father’s Day!

Then there are the dads that showed us the way. Steve’s dad, Ed is the nicest guy in the world and I could not ask for a better Father in law. He has been there for his wife, kids and grandkids whenever they need him. He worked hard, retired young and has enjoyed himself staying active in his community, his church and on the golf course ever since. My dad was a larger than life figure – and I am not saying that because he was my father. He was widely respected and admired because he was a great guy, ran a successful business for 40 years and accomplished incredible athletic feats. He and my mom raised seven confident kids who try every day to live up the example they set. My dad passed away 2 years ago and I miss him – even more today.

These are just some of the dads in our orbit. There are so many more we should acknowledge, especially the single dads who are doing it all.

Happy Father's Day to all the dad's out there. I hope you have a wonderful day of pampering.

Sleepy Summer Days

The first week of Summer school is ending. Maggie is exhausted. She slept for three hours yesterday afternoon. This new schedule is knocking her for a loop. The bus comes a full hour earlier than it did in the regular school year. She has to be downstairs and ready to go by 7:20AM. That means she does not have that extra bit of sleep she used to get before the wild morning routine starts. Now it starts at 6:00AM instead of 7:00AM. The night nurse has her dressed for school when I come down and we have arranged her schedule so that she’s fed and catheterized at 6:30. That is less stuff that I have to do, which is great for me. I still have to fill the oxygen tank, program the computer (if I did not do it the night before) get the suction machine, tray, pole supplies etc. It used to be that Maggie was resting while I did all that. If she was not asleep, she was laying down quietly watching me bustle about. Now I am doing that while the nurse is finishing Maggie’s care. No rest for the wicked, I guess.
Summer school is a bit of a joke. According to the nurse, they are working on puzzles a lot. It really does not matter to me because this is her only opportunity to socialize. No one is programming her communication device except me because the summer school teacher is not an AAC specialist. Programming it is easy, but it takes a few minutes or dedicated concentration. You have to want to do it and even if she wants to, I doubt the woman has an extra 30 seconds in her day. Therefore, Maggie goes to school with her “news from home” programmed in and comes home with the same thing I put on in the morning. It does not matter. It is a good review for me. I have decided to make it a mental exercise to repeat my own words verbatim; maybe it will help stave off Alzheimer’s. (Sometimes you REALLY have to look for the silver lining)
The school day is short, 8:00AM to Noon. Maggie is home by 12:30. Because she is so tired, we have not done much in the afternoons. She just listens to stories and music. She will adjust, however, and I have to come up with some entertainment. Summer school will end July 24 (I think) and by that time she will be raring to go at 6:30 AM and we will have a whole day stretched out before us.
I need to come up with a schedule. It may sound ridiculous, but if I plan to be on the go by 9:ooAM every morning and back here by noon or so, she will have the most fun. She is a morning girl and we have to arrange outings around all her medical procedures. (I do not mind feeding her in public and do so all the time, but the catheter situation…, not so much) It is too easy to let the morning slip by and not get out. Once the nurse is here I have to tend to my stuff, so I need to make sure we are up and out early.
We are just a couple of blocks from the museum and the Academy of Sciences, which are both enjoyable. A morning at the zoo is a must and trips downtown to dad’s office, and shopping at Union Square, dog walks at Crissy Field or in Golden Gate Park, and maybe even a road trip or two to visit cousins in the North Bay. We will be girls on the go in August.
Now I am tired.

Don't make me watch a video!

Warning! I have another video to share; but it's short - less than two minutes.

It's a quick montage fromMaggie's graduation day and the classroom party following. She was the queen that day (like every other) and reveling in all the attention. You can see Grandma Carmel (my mom) and the famous Teacher Joe as well as her girlfriends.

One translation - when Maggie touches her mouth or chin that means "yes".

http://www.youtube.com/watch?v=YyOSGQRyTXU

Foggy Day

I awoke this morning feeling as if the fog had lifted; 36 hours after I took a new drug I finally felt normal.

I went to the doctor last week for a stubborn rash on my leg. It is only a patch of eczema, nothing really, but it has been there for well over a year. It is annoying and, though I have some prescription ointment I cannot get rid of it.

I went to a new dermatologist because the other one is not on my insurance. This guy was nice and prescribed a stronger ointment and some oral antihistamine. This would prevent the scratching in my sleep that is preventing the rash from healing all the way. He said the pills “might make me a little sleepy” so I should take them at night. I asked if they would knock me out, because I really cannot take anything that strong. I have to be able to “snap-to” in a minute if there is an emergency. He assured me it is not a sleeping pill, just an antihistamine, like Benadryl but a bit stronger.

I didn’t even fill the prescription for a week. I was still using the other ointment and this annoyance has just become part of the backdrop of my life. I went to Walgreens and picked up five of Maggie’s prescriptions along the two of mine. The woman in Walgreens said seven prescriptions at once might be a record. [Hold applause]. The drugs Maggie is on come in good-sized boxes, so I left there with two shopping bags filled with controlled substances.
I have never heard of the drug he prescribed and did not bother to look it up. Funny, if someone prescribes something for Maggie I am all over the internet finding every side effect and nuance of the drug. With me, meh, whatever! Stupid.

The bottle said to take 1-3 pills after dinner/bedtime. I figured I would start with two. BAM! I was out like a light. There is no doubt that I did not scratch my leg during the night. In fact, I did not move a muscle. Good thing there wasn't any emergency. The alarm woke me at 6:30, which is odd. I always wake before the alarm because my internal clock is so reliable. I tried to shake off the sleepiness. I gulped down strong coffee and got Maggie ready to meet the bus. After she left, I had to get to a breakfast meeting which lasted until about 9:30. I knew something still was not right when I could not remember how to get to my client’s house after our breakfast. I came home and climbed back into bed and slept until noon. Maggie would be home soon and I was still groggy. Fortunately, the nurse was coming for the afternoon so I did not have to be in charge.

The plan I had for dinner was jettisoned because it required ingredients from the store and I did not have the energy to go out again. I made do with what was available. I folded laundry and fought the urge to go back to bed. I fell asleep in the chair about 8PM while Steve was out walking the dog. When he returned I said this is ridiculous and went to look up the drug.
It’s doxepin, a psychotropic drug with antihistamine effects. The typical dose is much higher than anything I took, but it just completely knocked me out. Something like 20% of people experience the sleepiness that I did.

Steve thought this dermatologist was very perceptive to put me on a psychotropic (mood altering) drug after looking at my leg for five minutes. Thanks, honey.

I am going to ditch those things and stick with the itchy leg and b_tchy mood.

That’s how I roll.

Lazy Hazy Crazy Days of Summer

The last day of school was Tuesday June 9. Before I could even worry about the long summer stretching out in front of me, summer school started.

Yep, it started this morning and lasts for five weeks. The day is shorter and starts earlier than the regular year, so we have to adjust. The school bus will arrive at 7:24AM, a full hour earlier than the regular year and Maggie will return home at 12:30. I drove her this morning because of all the supplies we had to transfer from the old site. I left her with her familiar and wonderful nurse and with all the same classmates as the regular school year. It is in a different place with a different teacher and aides, but there is enough familiar that I am not too worried about her.

When I came home, Steve asked if Maggie was scared. I said no. The only one who looked scared was the teacher. She had four nonverbal kids in wheelchairs and was clearly overwhelmed as she walked into the classroom with a basket full of breakfast items. It did not help when the nurse said only two of the kids eat. The teacher said quizzically, “I beg your pardon.” And the nurse advised that two of them have g-tubes. (Gastrostomy or feeding tubes for those of you not familiar with the lingo). Breakfast was the first activity of the day and two of the four could not participate. The next activity was to make pudding, but Maggie cannot even touch that stuff or she gets terrible hives. The nurse knows all that so Maggie is safe. The teacher looked stricken and I took that as a sign to leave. The last thing that poor woman needed was a parent making judgments. The teacher will be great I’m sure, but it may take a few days to get the “deer in the headlights” look off her face.

Summer school is chaotic on the best day, and day 1 is a joke. Maggie did fine, but for the first time ever she used her communication device to tell her nurse she wanted to go home. This was at 11:00AM, an hour before the day ended. Maggie came home and crashed. She’s been sleeping for an hour already. Anytime she has a new situation she handles it fine while she’s there and then just shots down to recharge.

It’s a good game plan.

Unrelated: Steve and I went up to the Marin Headlands on Saturday. It was a gorgeous day and we acted like tourists, even though this spot is probably less than 6 miles from my house. How about that view!

Catching up...

It has been a crazy busy week around here. Despite graduation, Maggie returned to school to finish out the last two days with her classmates. School is her social center, so she was delighted to go.

That gave me the opportunity to gather all the supplies from this classroom and have them ready for summer school. There are two huge bags of diapers, tubes, food, meds and other supplies. I am just leaving those intact in the back of the van to bring to the summer school site. If I move it I will use something and then have to run around to get her set up at the new place.

I also had the opportunity to get some gifts for the teacher and staff in Maggie's classroom.There is the teacher and the nurse and two aides who I felt must have something from me.There are countless others as well, but I focused on the classroom staff. This is the end of three wonderful years. Of course there is no way to convey the thanks I feel, but I was happy to give something.

In unfortunate news, Tim's days as a kilt wearer are numbered. In fact the number is 1. His last day at the Scottish Import store is tomorrow after only two weeks on the job. Seems the boss man finally read the rules on Wednesday as he was preparing Tim's first check. In addition to the charming kilts, rugby equipment, cashmere sweater and tweed caps sold at this store there is very high end single malt scotch. They have open tastings. Open alcohol presents more stringent rules. Turns out you have to be 21 to work there. Tim will be 19 on Wednesday. To say he is bummed is a gross understatement. So it's back to square one on the job search, but at least this time he has some walking around money.

Tonight Maggie is having her first ever sleepover. Her friends Jordan and Sierra are coming over. At first it was just Jordan, but I decided it would be easier if there were two of them. Once Maggie goes to bed she is hooked up to all sorts of machines and the girls will then have each other to hang out with. I'm not really sure how this will go, but they've been hinting around at this for a while and ...what the heck. They have been good friends to Maggie for a couple of years now. Maggie's limitations don't seem to bother them, so we're going to give it a whirl.

Here they are together on Maggies graduation day. They were the designated "Mobility partners" for Maggie and her classmate Grimaldy who was also graduating. The girls were assigned to push the wheelchairs across the stage and back to their place. At the last minute Griimaldy skipped the ceremony, so Sierra accepted his diploma for him.

We will have a fun evening of music and perhaps another showing of "Paul Blart, Mall Cop."

Yes, I said another. It came from Netflix the other day and we laughed all the way through it.

Don't judge me. That movie is funny.

The Village People

Whew! What a weekend. I am actually glad to see Monday roll around so we can get back to what functions as normal in this house.

The graduation was great. Maggie was the very last one to process in and went right next to where I was sitting. She was very excited. For reasons not entirely clear to me, she was the very first one to get her diploma. Everyone else went alphabetically but I think it was easier to get the wheelchair up onto the stage ahead of time and have her go first. I realized it just before they began calling the names because I could see her feet sticking out from behind the curtain on the stage.

Of course, because Maggie was first, my anticipation and interest waned; and listening to the other 250 names became very long. I realized then how little interaction I had with the school. All my interaction was with Maggie’s classroom, and she was in the same room with the same (wonderful) teacher for all three years. Other than those who worked directly with Maggie I knew the principal and the assistant principal and recognized a speech therapist and one teacher, but that’s it. That is just the way it is. It is a special Day Class within a typical school. That offered Maggie a lot of opportunity to mingle with typical students, but mom kept her distance.

Saturday was the party. There were over 50 people through the house during the course of the afternoon. Maggie was in her glory. There were grandparents, aunts, uncles, cousins, current and former teachers, aides, friends. All of these people, along with others who did not attend contributed to making Maggie the success story she is today. I told two of them that if it truly takes a village to raise a child, they were her village.

Raising any child requires input from many sources. Many parents will not admit it, but they take cues from grandparents, friends, teachers, etc on how to be a good parent. These cues are absorbed into and become part of their parenting style. It’s subtle, but it’s there. With a special needs child that is magnified a thousand fold. I did not know what to do or how to do it. I had to learn medical procedures, and ways to teach as well as learn from Maggie. There is very little peer pressure to raise your severely disabled child a certain way because no one is competing. In fact, most people would prefer not to know anything about it. Hence, as a parent you find the ones who know and gratefully gobble up whatever they have to offer. Eventually you find you feet and pick and choose the advice and suggestions. Nevertheless, as a parent you know that there were people who showed you the way. There is no subtlety involved.

I want to say a big thank you to everyone who helped Maggie get where she is today. There are doctors, nurses, teachers, therapists, friends and family. All of you contributed in huge, meaningful ways and Maggie and all of us appreciate it more than you know. You are the village elders.

I'll Remember always.....

....Graduation Day.

I'm off to see Maggie graduate. It was dog eat dog for tickets. Her classmate, and the only other graduate in her class, is skipping the ceremony. The amplified voices and the screaming kids are too much for him. His mom kindly gave us their tickets. Now Grandma can come too! We will see him at the party back in the classroom after the ceremony.

I have to be there early to elbow my way into good seats for me and my mom. Steve will put Maggie on the bus and we will save him a seat. Tim won't make it. He'll be late for work if he goes to the graduaiton.

But there is a P A R T Y tomorrow at my house. C'mon over!

Dyna-Movie

ok, Here's the first attempt at movie making with my flip camera.It's Maggie using her dynavox and it's less than 2 minutes.

Since I've described it so often, I thought you might want to see it first hand. And if not, at least I figured out the video camera for now. There is a typo in the title page that I thought I fixed, but it's not there forever. Ah well.

Generally she doesn't need this prompting, but me holding the camera was fascinating for her. She is operating the dynavox using the two switches mounted on her tray. We call them the "mover" and the"chooser" They are a bit like a mouse. One allows her to move it and the other to choose or select when she gets where she wants. She has to use the "chooser" to navigate between pages as well.

You will also see a demonstration of her yes and no - She will show you that "yes" is putting her hand to her mounth and "no is putting her hand down.

I cna't figure out how to embed it here,so I'll just give the you tube link

http://www.youtube.com/watch?v=aIRiqzuj5Tk

because I must

As I wrote the other day, Maggies' brother Tim has a new job that requires him to wear a kilt. I would be remiss if I didn't post a picture.

What do I say when my almost 19 year old son looks better in a skirt than I do.

Ever since Maggie’s birthday party in March, we begin our morning listening to the "Maggie Mix" on the IPOD. This is a playlist of the songs from her party that were suggested by her girlfriends and cousin. We bought about 30 from ITunes and made the mix. Each partygoer received a double CD set as a party favor. It was a big hit.

On school days, the nurse does the morning routine for Maggie very early. Maggie is being dressed, changed, medicated, etc by 5:00AM or so. I come down about 6:30 and get report from the nurse. Often Maggie has gone back to sleep by then. There is still a lot to do to get her out of the house on time. Generally, I get as much stuff ready the night before as possible. However, several things have to be done at the last minute so that she will be on the right schedule for school. We have to start our “get out of the house” routine/race about 7:15 or 7:30. If she has fallen back to sleep, I let her do so for as long as possible.

My computer is in the dining room, just outside her bedroom door, so I can tend to her needs, suctioning etc. On the days she is asleep I work quietly until I hear her stirring – usually before 7:30. (Once in a great while I have to wake her.) She starts shaking the side rail on the bed to demand my attention. I try to finish whatever I am doing, buying a little time by saying “Just a minute Mag” “Let me finish this”… etc. When I hear things really start rocking, I know she has had enough. I better get in there and turn on the music.

We have to start at the beginning of the mix. It has to begin with the same song every morning. As soon as Maggie hears the beats of Beyonce’s “All the Single Ladies” she gets excited. I crank it up and we get ready to the sounds of pop music. Not my favorite, but tradition is tradition, even if it has only been 3 months.

We may have to adjust this routine a bit. Tim is home now and asleep just above the music player. He begins work at noon so he does not have to be up early. He has to adjust to the fact that he does not live with a bunch of college students any longer. I am sure the parents of the small children in the house next door are hoping that adjustment comes soon. But we have to adjust a bit to his different sleeping schedule too.

Considering I yelled at him to turn his music down before 10 last night, I guess fair’s fair.

Great Skort!

Often times people assume they understand the difficulties of having a child in a wheelchair. 90% of the time, that understanding involves the perceived emotional impact. That is part of the difficulties, of course, but it ebbs and flows and some days it is not even on the radar. No one thinks about the little things, the everyday inconveniences.

One of the many inconveniences of Maggie’s disabilities is the way she is secured into her chair. It takes seven straps and buckles to hold her in place. That takes a lot of time to complete a transfer into or out of the wheelchair. One of the straps is specifically “Maggie proof” requiring a pen or similar sharp object to unlock. That was necessary because she spends her days fumbling with the latches. She has figured out how to undo several of them. The “Maggie proof” latch will keep her from falling onto the floor in the event she unlatches enough of the others. She will not look good in the chair if that is the only latch still locked, in fact, it’s likely she’ll be hanging at a scary angle, but she won’t actually fall out. Presumably, someone is near enough to her at all times that the scary angle will alert him or her to a major problem. One hopes so, anyway.

Two of the straps, probably the most important of all in terms of her safety and proper positioning, come up between her legs holding her hips and pelvis down. Because of the configuration of these straps, Maggie cannot wear dresses or skirts. It’s just a “glamour don’t” for her. We have recently discovered skorts, the small skirt with shorts underneath. This gives Maggie some ability to dress “girlie”. Still, it is kind of a drag as we shop for graduation clothes this week or that special Christmas or Easter outfit that we can never choose the pretty dress. She does not care, but I do. It is just something a mom gets to do – dress her girl in frilly clothes. It is a small thing, but it is there.

Maggie’s graduation outfit is set; she will wear a cute matching summery pants outfit. That’s just the way it is and it’s fine.

There was an exciting development here, though. My son Tim secured full time employment. He starts Tuesday. It is in a very nice, rather upscale, Scottish import store in Union Square.

One of the job requirements: he has to wear a kilt.

Turns out, I will get to see my child in skirt after all. Different child, different effect, but my wishes are general, not specific.