Birthday Prep, Government Style

Birthdays are hard for many parents of disabled children. Birthdays are a reminder of another year past, more milestones unmet, and for those whose disabilities started at birth, are a reminder of a very sad day in our lives. This has become easier with every passing year because it's just part of the whole deal, but it's still there. This year may be particularly rough. This year Maggie becomes an adult. That means all sorts of changes that Maggie may be ready for, but I am certainly not. For example, Maggie has her appointment with Social Security tomorrow.  Because she will be 18 on Saturday it's time to get her into the system.

 I spent over two hours completing her Adult Disability Report. Yikes! It's an online report that certainly does not consider a person as involved as Maggie. I had to list ever medication, which is easy enough, every doctor, which is fine but I did not include the doctors at the various hospitals because I have no idea of their names. The form also asks for every medical TEST that she has had. I'm pretty sure the internet would explode (as would my head), if I actually had to list all of them. I don't think I could even tell you all the tests she had done last year, let alone in her life. It simply cannot be done. For every test I thought of I just said this was done multiple times, which is true. Hopefully I didn't forget anything pertinent. They have more than enough information and everything else will be in her voluminous medical records which they will request.

I do feel sorry for whoever gets her file.

Tomorrow morning I take her to the Social Security Office to do the actual application. I think I could have done it online, but a lot of it is unclear when you are dealing with a person who cannot speak or sign for herself.  Once they see her, it will be a lot easier, I am sure. It's not as though there is a question that she is disabled and I suspect the intake person will have a way to expedite the forms which are basically designed to confirm disability status.

It will be good to have this done.  Anticipation is often worse than reality and I'm banking on that here.

As for the rest of the birthday melancholy - it will be buried in the festivities! Maggie is ready to party down and I am happy to join her.

Down and Out

 People are always telling me that they have a terrible cold, the flu, or any number of other ailments and I cluck sympathetically, but I never catch it. I injure myself regularly, but I rarely get ill.  Don't ask me why because it defies common sense. I am overweight, sleep deprived, sedentary, clumsy and yet extremely healthy.  I'm not complaining, mind you, just marveling.

On those rare occasions that I do feel under the weather I try to power through it because there's just too much to do. When I can't  do that I'm really not sure how to behave.  I believe that time should stop and wait for me but it never does.

Sunday night I was hit with a terrible stomach  pain and spent the evening in a ton of discomfort. I was sick. Steve and Maggie were asleep in the chair so I needed to wait to let the nurse in at 11:00PM before I could go to bed (It is impossible for Steve to answer the door when 80lb Maggie is sleeping in his lap). Finally I went to bed and slept fitfully all night.

Steve had to travel yesterday and was gone by 6AM. I got up and did the crazy morning thing and got Maggie off to school. I skipped my obligatory morning cup of coffee, which should have tipped me off that this was going to be a different kind of day. I was fuzzy and not great but not terrible. I  talked to Maggie's doctor and did a few other things. I sat down to work trying to power through this malaise, but  I could not concentrate. At around 9:15 I decided maybe I should lay down for a while.

I took my computer with me, determined to at least do my nursing paperwork that has to be in by Thursday. I set up a ton of pillows on the bed, got my cell phone and the house phone so I wouldn't have to get up. I opened my computer and tried to adjust my glasses to see the screen better. I put the computer down for just a moment. Next thing I knew the phone rang at 10:30 waking me up. Oh, I guess I was tired. I talked to the supply company that sends Maggie's food and feeding supplies arranging for a delivery on Friday. I put down the phone, glanced at my closed computer, took off my glasses and went to sleep.

I woke up at 1:30 in the afternoon! Time did not wait for me at all it just watched me sleep. Maggie's big party is Saturday, I have a gazillion things to do and I slept the day away. I feel a lot better today, but now I'm even further behind than I was.

So it's back to the hamster wheel for me and now I have to run just a little bit faster. Hope I don't fall off.

 

Blast for the Past

I have been going through old pictures and cracking up.  I found this one of Maggie in probably 1997 or 1998, making her three or four years old. We are at the Giant's Game - and this is in Candlestick, before the new stadium was completed. She was having a great time.

I should probably wait to post this for opening day of the Baseball season next month,  but I will likely forget if I don't do it now. I do miss those curls. That's Eddie with his ever present buzz cut in the foreground.

I Am Not a Crook

The budget crises in California is legendary. Everything has been cut to the bone and some things eliminated altogether. Things are much harder for disabled children then they were when Maggie was young, that is for sure. Parents have to fight much harder and pay much more for less services than were available to Maggie when she was young. From the sounds of it, things will get worse before -- or if – they ever get better.

It’s not only services for the disabled that are cut, of course. All services are effected, including police and fire departments.  A man was killed in Berkeley over the weekend because cops were only responding to emergency calls and the victom’s call to the police was made to the local number instead of  911. Ridiculous and tragic. A friend of ours witnessed an assault and called 911 but the police never responded.  After 30 minutes of bleeding,  the victim simply got up and walked shakily away over the protestations of our friend and another witness.  Now in addition to a crime, there is a public health situation because the man was dripping blood as he walked away.  In another instance a friend was “jumped” and dissuaded by the police from filing a report. Since she could never have identified her assailant, she went along with that.

If the police cannot respond to or don’t want to file a report in those situations,  all serious crimes,  someone has to tell me why a cop can make a u-turn across Geary Street, a six lane street, to cite my son for littering. LITTERING.  (Admittedly, he did dispose of a free sample of some drink inappropriately, as did 25 other people because the only trash can was locked.) Never mind, I already know the answer. This infraction is income generating while unsolvable assaults are not. The fine for littering is close to $500. That pays for the shift for the officer for the night.

I’m generally not so jaded, but it is difficult not to be.  Maggie’s school nurse was recently cited while parked in MY DRIVEWAY. We let her use the driveway everyday because there is two hour parking on the street and she is with Maggie at school for 7 hours. She would be ticketed every single day. She drives a van which just fits in the driveway. One day her car was less than an inch over the line and she was hit with a $100 ticket for blocking the sidewalk.

The second line is the key and her bumper is about 1 inch over it. Ironically, this line is the boundary to insure that a wheelchair can get by behind the car. She is parking there because of a wheelchair user and still gets tagged. We explained that in our letter to the Parking and Traffic department including this picture of Maggie getting by the car on the side and explaining that she could easily pass in the back.

I also explained that we have given up our driveway, that we have five or six nurses that care for Maggie and there is no pass available that can be shared among the nurses.  Result: tough bananas. The $100 fine stands because it is possible for us to purchase a pass for each nurse at a total cost of $500 or 600. This is after we have paid the city $200 ourselves for the privilege of parking on our own street for more than two hours at a time. 

I call foul.

It seems to me that the budget crises is being solved on the backs of the honest citizenry.  Crooks who assault people walk away because the cops don’t have the manpower to respond, but skirt a law that generates income for the city and they find a way to be there.

I am not a crook, and I’m paying for that.  

Hope Magazine

I was asked to write an article for Hope magazine, a magazine published by the Children's Hospice and Palliative Care Coalition in Watsonville, Ca.  I wrote it several months ago and wondered when it would come out. Today I received a couple of copies in the mail. I will post a link to the article when it's on the website (www.childrenshospice.org) but for now I want to share the (scanned) back cover of the magazine which has a picture of Maggie and me and short blurb by me,

My favorite part of this is the part I did not write. If you cannot read it it says:

Hundreds of thousands of children like Maggie live every day with conditions and illnesses that threaten to end their lives prematurely. Some will not survive into adulthood. Many will. Their care and that of their families is a moral priority.

Yeah. I can get behind that

Countdown begins

Maggie is turning 18 on March 3, which is almost unfathomable to me. Maggie entered this world with the deck stacked against her in so many ways; but she surprises all of us time and time again.  We decided this birthday presents the perfect opportunity to thank all the people in Maggie's World who have helped her and us get to this point.

Many people who have helped Maggie over the years will be joining us for a party on her birthday. I hesitate to write this because I could not invite everyone and had to pick and choose representatives from various parts of her life. Some parts are woefully under represented. Other parts are not. If I included everyone, I would have had to rent AT&T Park, which was a bit out of the budget. As it is, Maggie may be a bit overwhelmed that day, but I know she will enjoy herself despite the amount of people that will be there.

We are amazed at the response to this party and all of us are looking forward to it. Folks coming are not to bring gifts, but we encourage those who want to do something to make a donation to one of the organizations that have helped Maggie over the years. Those are already happening and that makes us so very happy. Thank you all who have done that.

A friend gave me the excellent idea of putting scrap book pages on the tables to give folks an opportunity to tell Maggie what they want to say. If any of you in Maggie's World want to add your comments, feel free to do so in the comments or by emailing me something and I will make sure they get into Maggie's book. If you don't want your comments published, just tell me and I will make sure it doesn't go public.

In the meantime, I have to get scrapbook pages, get pictures into frames, come up with some sort of table decorations and create a new Maggie Mix for the party. My friend Rose is doming over today to help me alter Maggie' party dress which was a gift from Maggie's friend Anne Marie. Here's a sneak peak.

Ten days to go. So much to do.

Be careful what you wish for....

Let's just get it out there. There is no pleasing me.

You have all read my various posts about Maggie being ignored or invisible to society. You've probably gagged over my gushing love of San Francisco's quirkiness. Both of those were turned a bit on their head on Saturday.

Part of San Francisco's quirkiness is the homeless population which contains far too many people with mental illness who wander the streets lost in their craziness. This is a population that sees Maggie very well and always stops to engage in conversation with her. It's fine, though a bit uncomfortable at times Saturday was definitely uncomfortable.

We decided to go to the main library to check out the selection of books for the "Visually Impaired and Print Disabled." Maggie's vision teacher arranged for her to get this book reader specifically designed for the visually impaired. It could be a great thing for Maggie but so far she has shown very little interest. It didn't help that the two books they sent were about George Washington Carver and Growing your own vegetables. I thought if we found some stories that interested Maggie she might really take to this medium and could get interested in all sorts of books.

The main library is in Civic Center. City Hall, the Civic Auditorium, the State Court building and the Asian Art Museum, all fantastic buildings surround Civic Center Plaza. It looks very stately. It is also a haven for the homeless, who have nowhere else to go. Generally the area is teeming with people because there is always something going on. Saturday was strangely quiet and the more colorful individuals, who are generally part of the background ambiance, were front and center.

First a woman in the library asked a ton of  too personal questions and sort of followed us around. She was harmless, but a bit intrusive and inappropriate. Later, a man in the audio books department told Maggie and I to watch a certain move so we could grow spiritually, emotionally, physically and mathematically(?) and every other way. OK. A close talker with strong opinions but still harmless. We were polite, but kept moving.

We decided to walk over to City Hall. As we approached there was a group of well dressed people with large bouquets of flowers waiting on the steps. They were kind of blocking the wheelchair ramp but before we asked them to move, Steve popped up the steps to see if the building was opened. It was not. I stopped pushing Maggie while Steve went to check. Big mistake.

In the moment he ran up the five steps, a woman standing with the group came bounding toward Maggie and I. I hadn't noticed her before, assuming she was part of that group. But she was not, and I dare say that group was probably relieved that we happened along to draw her attention away from them.

She was shoeless, though, curiously, she had on what appeared to be brand new socks that matched her pants perfectly. Both were bright orange. She was missing a few teeth and her bare arms, visible because she was wearing only a .tank top, were badly scarred as though she had been terribly burned at some point. She started talking to Maggie as though I wasn't there. She was squatted next to the chair holding onto Maggie's tray with her face very close to Maggie's. "Hi baby, how are you. you are beautiful. I like you." I was very uncomfortable and then she started stroking Maggie's arm. Steve bounded right back down the steps and we looked at each other sort of stricken. We don't want to be unkind, but touching is NOT ok.

The woman wasn't doing any harm but she was way past the boundary and she was kind of freaking us out, Maggie included.  I just started pushing the chair making goodbye sounds. She didn't want us to leave, telling us to slow down and where are you going.  Why are you walking away? What's your hurry?"

We just strolled along as though nothing untoward had happened. It was just a couple of minutes. I never moved from the back of the chair because I wanted to get out of there. I could not see Maggie face. When Steve came back down he was as horrified as I was that this stranger, of questionable hygiene, was touching Maggie. He told me later that Maggie was giving her the "stink eye."

 I felt sick to my stomach. It was disconcerting on so many levels. Steve and I were both bothered by this tremendously. It's so wrong that this woman has to live on the streets and it's not her fault.. She was clearly mentally ill and obviously had gone through a lot of things in her life. But it's still not ok and I didn't stop her and that bothers me tremendously.   She was not violent, but she could have been. She did not hurt Maggie, but she could have. I just stood there trying to be polite and wanting to get away as fast as I could.

After this I will not complain (for a while) about people who ignore Maggie. In fact, the next twenty people who ignore Maggie or treat her like she's invisible might just get a big kiss from me.

Because that's not inappropriate at all.

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!

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Professional parent

Maggie is off school today. It is a furlough day. A day that the state took away from the education of California youth and a day that teachers and other district employees go without pay because of the budget problems. I will just let that stew out there for everyone. If you don't find it ridiculous and upsetting please  wait and think about it again until you do.

Generally, a day off is just another excuse to hang out together and go on one of our many outings. Not today, though. I have to go to work. Because I am self employed and can control my schedule,  I have always been able to work when Maggie was at school. I recently agreed to work somewhere else on Friday mornings. After nearly 18 years of making my schedule work for Maggie, I have to make sure I have child care so I can go to work. I feel like it's 1991 all over again!

My job is only on Friday mornings.  I work about three hours a week at UCSF Benihoff children's Hospital. After volunteering there for years, they finally decided to make me a contractor. I work in the Family Resource Room, which is a place where parents of inpatient children can go to use computers, make long distance calls if needed, grab a cup of coffee and a magazine or just take a break from being at their child's beside 24 hours a day. This place saved me when Maggie was in the hospital for long stretches. Now there's wireless access, for those who have portable computer devices, but five years ago and more the only way to get online was in that room.  I am one of two parents doing this and I can tell you it is a big deal.  The hospital hired us BECAUSE we are parents, which demonstrates an understanding of the unique role veteran hospital parents can play in supporting families in the hospital.

I guess you can say I'm a professional parent. Becoming a lawyer only took three years after college. The preparation for this job was much longer and more arduous.

I just started this job. In fact the unbelievable amount of required paperwork was finally completed yesterday. Obviously anyone working in a medical center has to show they are not carrying any diseases. In the past two weeks I've had a flu shot, a tetanus/diphtheria shot and a TB test. In addition I had to show immunity for or get a shot to prevent MMR (measles, mumps and rubella) and varicella (chicken pox.)  Because of my advanced age  I actually HAD all four of those diseases when I was a kid. [Yes, I know there are vaccines now,  I hear they have also invented fire.] I did not want to have live viruses injected into me and opted for the blood tests to prove I had the necessary immunities. Sadly I forgot to tell the doctor to order the varicella and had to go back for a second blood draw. I asked if I could just bring a note from my kindergarten teacher that I did in fact have the chicken pox in 1961, but they wanted it done their way. Very well. I feel like a pin cushion, but mission finally accomplished. I can now tell you that I am immune to nearly every disease known to man.

I am not immune from child care issues, though. Generally the nurse come after school and works with Maggie into the evening. I asked Josephine to come early today so I can go to the hospital and do my gig.  I promised Maggie we would go to the mall at dinner time. This way, even though she's stuck in the house all day, she has something to look forward to. She is excited about that because there will actually be people her age at the mall on Friday evening, not just the old ladies like me that we see when we go on weekend mornings.

Maggie knows that Josephine is coming and that makes her happy. She also knows that we are going out after Josephine goes home and that makes her happy. She's ready for this great day to begin. For the first time in her life Maggie just made the following sentence:

"Mom, go to work Mom"

I have to tell you that made me quite happy. So I'm off.

Happier memories

Yesterday I put the Chinese new year mask on Maggie's bulletin board in her room. I stood there for a few minutes looking at all the things up there. They have become part of the backdrop but each one is a good memory.

Bittersweet Memories

Steve found an envelope full of old pictures the other day. It was probably from when he moved his office several years ago. There were pictures of all three kids as babies as well as hilarious pictures of the boys and their cousins. Each one made us smile or laugh at the memories it evoked.

 Then Steve handed me this. I pulled the picture to my chest and and my eyes filled with tears. I looked at Steve and he gave me a wry smile. He said, I knew that was going to get to you. It brought back so many memories of those early years that it hurt.

This is Thanksgiving 1995 (I can see the date on the picture) at my in laws house in Pleasanton. There were often two dining room tables set up on holidays to accommodate everyone. Maggie was 19 months old. Her face is puffy from all the drugs. Her glasses are on top of her head holding some of her curls back and her head band in wrapped around my hand that is holding her. That was typical. She never left her glasses on her face and the headband never stayed on her giant head. 

Her head was so big because of the hydrocephalus. It took years before the proportions of her body looked more normal. If you notice, she has a lot of hair on the back of her head and not much in the front because she was growing it back after one of her many brain surgeries to deal with the shunt/hydrocephalus problems. That was a very hard time for all of us. 

The sweetest thing about this picture, and the memories that came flooding back are based on the dress she is wearing. It was a gift from a lovely Japanese family we only met a few times. They had a daughter named Ayaka who was in the infant program with Maggie. We went to a group class every Friday and to individual therapy sessions a couple of times a week.Though the sessions were individual, the group members overlapped all the time. We often saw other members of the group three times a week. After a while,  Ayaka didn't attend very often because of whatever medical problem she had. Ayaka passed away when she was very young, probably a little over a year old.  

Maggie and I went to the service for Ayaka. I remember very clearly feeling like I was intruding as we entered the funeral home. The service was in Japanese and I didn't know what they were saying, but I knew what it was like to have a sick baby and I felt for this family.

 I approached them afterward and had to reintroduce myself and Maggie. They didn't recognize Maggie because babies change so much in those months. Though she spoke English, Ayaka's mom didn't really understand me at first. When it clicked she said OOOOHHH, Maggie! The mom took Maggie's face in her hands with the purest expression of love and gratitude I have ever seen. It makes me cry to think of it.  I didn't feel like we were intruding anymore.  

A week or so later the dad arrived at my door with this beautiful jumper for Maggie as a gift from Ayaka. She never got to wear it because she didn't live long enough to grow into it. I was never more honored by a gift and Maggie wore it many many times. . 

Sometimes pictures just transport you back in time. It's as though i can feel the weight of Maggie's big head on m arm as I hold her. I can see my sister in laws face on that Thanksgiving night as I told her this story. Her eyes filled up with tears then just as mine are now. 

Sadly, Maggie has lost many friends over the years. I think I realized at Ayaka's service that this was just  part of this life we are in. It's not a good part, that's for sure.

 I remember Ayaka and everyone of those children and think of them and their families often.  

Where did I leave my heart?

Happy Valentines Day to all.

Maggie went off to school with chocolate hearts for all her friends and teachers. In years past we've done more elaborate valentines, but she is going for the understated and classy approach this year. That and this day sort of sneaked up on us giving us no times to prepare. Oh well. The thought is pure.

We are looking past Valentine's Day and President's Day to Maggie's upcoming 18th Birthday. We are planning a big party and all energy is focused there. Maggie thinks the priorities are just right.

If you mention her birthday she starts waiving her hand in the air. She is actually looking forward to it, which I believe is a first. Maybe she's just looking forward to being 18, so she doesn't have to live by my rules anymore.

For those of you in San Francisco, pay attention to the Tuesday noon whistle/alert today. Instead of the normal air raid sound with the unintelligible instructions you will hear "I Left My Heart in San Francisco" because today is Tony Bennett day and the 50th anniversary of that song being released.

Edit update: 12 noon has come and gone, and no Tony Bennett over the emergency system. Too bad. I plan to sing it from my beck deck for all my neighbors. It's the least I can do for all of them.

Relaxing at the Mall

As is the case nearly every weekend morning, Maggie used her dynavox to tell me she wanted to go to the mall. This "chatter" starts around 7:00AM when the nurse leaves and doesn't let up until we are in the car. That's around 10 because I find it's easier to hang out in the mall once it is actually OPEN to the public. 

For the first hour I tell Maggie its too early and she has to wait. Then I tell her all the things we have to do before we can go. (I have to take a shower, we have to feed you and cath you etc). That is her cue to start demanding things. "Mom go upstairs:" Mom I am hungry. Zbreakfast please etc etc. she thinks the faster these tasks are completed the faster we will get to her beloved mall.

You should understand, we do not buy anything at the mall, it's just a thing with her. 

At 10:00 we were in the car and by 10:15 we were in the elevator heading into the mall. she just kept saying "Mom I am happy" on her talker. She stopped saying that or anything shortly after our arrival at the mall. I looked down at her and by 10:30 she looked like this:

Once she gets what she wants, she can relax.

Stumbling toward Friday

I'm finally feeling back to normal after a wild week. I sort of stumbled through a week that included my birthday and Maggie's IEP. The birthday was lovely and the IEP went fine, just as I thought it would, but it is draining and I was already running on reserves.

Last Friday night the nurse cancelled and I was up 3/4 of the night with Maggie. That throws me off for days because I never really get a chance to catch up on the lost hours of sleep. I couldn't sleep at all on Saturday night, which jut exacerbated the problem.  Oh I can nap here and there, but you really need that stretch of sleep to feel restored and rested.  Our friend Chris stayed with us last weekend and offered to take a shift in the middle of the night to cover Maggie. I though that was incredibly sweet, but we rarely require our guests to do emergency nursing services. He and Steve did take Maggie out early Saturday morning so I could catch a few hours of sleep, which helped.

There were two amazing things about the IEP. The first was that the teacher Mr. "G" (visible in the third picture below) didn't just give a report on Maggie's progress. He did a power point complete with several pictures. It was great. I have a copy of it and if I knew how to share it with you I would.

The other amazing thing about the IEP was the room in which it took place. Mission High School is a beautiful building with incredible tile work and details throughout. The current building was constructed in the mid 1920's, after a fire destroyed the original building.  I had never been in this particular room before. It is in the back of the counseling office, and was apparently one used as the school library. There was an incredible mural in the room which I've since learned was  "painted by California artist Edith Hamlin, who was commissioned by the Works Progress Administration’s Federal Art Project. The murals depict work and recreational activities at Mission Dolores in the early days." *   I also read that famous artist Maynard Dixon, who later married Edith Hamlin, consulted on the murals.  

I had to snap pictures of it. They overlap because I could not capture the entire thing in one shot, but you will get the drift.

. Not bad for a back room of an inner city public high school that far too many people dismiss. It is easy to be inspired in a room with a treasure like this

Will there ever be money for things like this again? Or will we all be marveling at the manner in which they can get 100 cars parked in a lot designed for 40.

Have a great weekend. Pray my nurse shows up!



*http://www.sfcityguides.org/public_guidelines.html?article=1215&submitted=TRUE&srch_text=&submitted2=&topic=neighborhoods authored by Tam Tran

IEP Day

Today is Maggie's IEP  or Individual Education Plan meeting. It's an annual review of where a special education student stands and what the goals and objectives are for the next year. The meeting culminates in the written IEP, basically a contract on how a student's education plan will go for the next year. If done correctly, it is a helpful document for student, parents and educators alike.

 For some parents these meetings are a battle to get the items they want in the written plan. There is strategic maneuvering and planning beforehand and precision execution on the day of the meeting. This is necessitated when parents want more than the school district is willing to provide - sometimes because school districts are not doing what they are supposed to do and sometimes because parents are overreaching. Either way, it can be upsetting and difficult for all parties.

Maggie's IEP' have never been like that. Perhaps because her needs are so extreme, everyone is on the same page regarding Maggie's needs and abilities. It is a long meeting, usually about two hours, where all the different people who work with Maggie give their reports of her strengths and weaknesses. I am grateful and happy that all these professionals spend time with her and work together to help her achieve all she does. There are no surprises at the meeting because I keep myself in the loop all year long. I don't have any new issues to bring up and do not expect any major changes to her program. I expect this will be the all the other IEP meetings she has had, congenial and helpful.

Despite the love fest that Maggie's IEPs tend to be, they are difficult on me. Another year has gone by and though she improves educationally every year, she is in a different world and it is never more apparent than at these meetings.  We are measuring her but we are not using any measurement that is applicable in the normal world.

She is who she is and that's fine with me, but this is one of the few times I actually sit and think about other kids her age.  I sit there for two hours and listen to how wonderful my daughter is and I'm proud and happy; but while we focus on her accomplishments, I can't help but think about what she cannot accomplish. Most 18 year old students are not praised for their ability to make appropriate 4 word sentences on their communication device.

 Is it impressive? Hell yeah!

Does it hurt just a little? Definitely.







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Morning after

I am recovering from my birthday. Which was yesterday. Don't get me wrong. There was no raucous celebration. It is just another birthday and that alone is exhausting.

I received gifts, cards, calls. emails and Facebook greetings and was overwhelmed by all of it.The best was from Maggie, though. She got off the bus and gave me this card she made.

The picture symbols you see say "Happy Birthday Mom Love" These symbols are what she sees on her dynavox and are meant to direct her to the word she wants. I'm not sure Maggie uses the symbols as much as her hearing and memory. (She gets an audio cue too). But they do make the card perfect.  


The text is my favorite, though it says:  


Mom, Happy Birthday. I love you. thank you for everything you do for me. I feel loved because my mom help Maggie with everything. Love Maggie

This sticky note was on it too. telling me "these are her words"

They are wonderful words. 

It's almost worth getting older.

 Almost

Laughing with dad

Maggie lives to hang out with dad in the evening. She either melts into his lap and falls asleep or yucks it up with him.

Last night she didn't look too sleepy.