Showing posts with label microcephaly. Show all posts
Showing posts with label microcephaly. Show all posts

Wednesday, January 14, 2015

Raising the Bar

A few years ago I attended a talk called 'Autism Across America" during the Family Cafe on Disabilities conference in Orlando.  The lecturer was a guy in his thirties with autism. He was clear on the point that he does not have Asperger's, he is autistic.

One morning that week I sat having my morning coffee while Daniel drank a Pediasure at the Cabana restaurant when the speaker (I've forgotten his name) joined us. We were outside next to the pool and the weather was just beginning to change from warm and bright to dark and windy. Daniel was covering his ears as he sometimes does. I asked Dan if the music playing overhead was bothering him, and the man immediately said, "It's the wind". After he said that, Daniel clapped and smiled. This is his most reliable way of saying yes. Our new friend added, "To an autistic person the sound of eyes blinking can be painful."

It surprised me when this man went on to tell me that Daniel reminded him of himself when he was young. He was there promoting a fiction series he'd written featuring an autistic main character. Was he really once as severely affected as he was saying? True, his eye contact seemed a little forced, and his speech patterns weren't typical, but he was obviously very independent. I didn't see a strong connection between them. I've learned more and my understanding has evolved since then. It's not about levels of functioning, it's about similar ways of experiencing the world. It's knowing first hand just how sensitive one's senses can be.

Later that same summer Daniel was assessed by the physicians at CARD (Centers for Autism Related Disabilities). We'd often been asked if Daniel were autistic when out and about doing our thing. While grocery shopping, one of the cashiers told me that his brother was autistic and smiled at Dan. Things like that happened a lot, but I always considered his autism secondary to his microcephaly, as it is in Rett Syndrome. I was unclear about the significance of the label because I was told so many times that he is profoundly mentally handicapped. I didn't understand enough yet. The specialists at CARD made the diagnosis official when Dan was thirteen years old in 2012.

Many people with autism who have learned to communicate through pointing to letter boards or typing say that they were considered to have very low IQ's until they could write and express their thoughts. Even then they were doubted and sometimes totally discounted. They write about the intense difficulty of getting their bodies to do what their minds want them to, such as dressing and tying shoes, or even pointing to the correct answer when they fully know it. Our conference friend told me that he had to work very hard just to make eye contact and vary his speech patterns. For many years he didn't speak.

I talked with another adult autistic the summer of Daniel's diagnosis. William Stillman is author of several books including Autism and the God Connection. He gave me feedback about Daniel that encouraged me to go forward with teaching Daniel to point and type. He reinforced the need to treat Daniel in an age appropriate manner. No more baby type toys or shows (I had been already been preaching that for years). "Treat him like the teenage boy he is!" Stillman insisted, even telling me that it was time for "the talk" regarding his changing body. He was emphatic. "Daniel deserves to have the information he needs about what's happening to him. Don't talk about him, speak to him. Make sure the bar is raised in terms of respect."

A lot of teenagers with autism and other disabilities are treated as if they're much younger when they aren't able to talk, walk or use their hands to easily manipulate things. I always explain that Dan requires total assistance with all aspects of his daily life, but I don't believe I have the right to assign a baby or toddler age to him just because he needs those supports. He is sixteen years old, and he has that many years of experience under his belt. I believe he deserves credit for that.

Friday, June 13, 2014

Day by Day

It's  an early morning in June and I'm sitting in the dining room with Daniel. He's drinking water (he loves to drink, just hates eating) and playing with some large toy trucks on the table. I look out my window to the right at my flower garden. The plumbago are blooming blue and spreading, the orange and pink lantana are reaching tall. I feel content.

Now that the school year is over I can relax a little. This past year was full of unexpecteds, including my cancer diagnosis. If I'd have known what was ahead last August as I prepared myself for a fresh semester, I don't know if I'd have made it through the first day. Thankfully, I was blissfully ignorant of what would unfold. I don't think we're meant to know the future in that way. We are able to carry our load each day, not cram our backpack for all future hikes ahead of time. If I'd had to plan far in advance for two surgeries, two recoveries, and extended time unable to lift Daniel, I would have had bigger problems than just beating cancer. Anxiety would have kicked my butt. So here I am, past all of that.

Daniel is in the summer of his fifteenth year. I am amazed that he and I have managed so well for so long. Many years without any help at all. Several with me a single mom. I'm 52 and a little tired, but grateful that some help finally came in the way of personal care assistants a few years ago. We interview two new ones tomorrow.

My last post was in February, and it was prompted by the dream I had of YEARNING. I'm not entirely clear on what the dream reflected to me. I have some ideas, but there are probably multiple meanings that are correct. I do know that I am in a time of transition, and some of it is painful.

My oldest graduated one week ago. Daniel stayed with friends, because he doesn't handle lengthy periods of sitting quietly very well. Truth be told, sometimes he can't stand even ten minutes of restaurant time. Church is unbearable for him, but he loves the teacher in the Sunday school at our Unity services. She's a Reiki healer, and her presence calms him. I've finally learned to stop trying to force what isn't going to work, and relax into what does.

At the same time, my mind has been visiting  places I try to avoid. What if Daniel were a typical 15 year old? He'd have been there with us at the arena for graduation, posing in all of the family pictures afterwards. He'd have ordered something teenage boys like at the restaurant celebration, instead of drinking his meals and needing breaks by strolling outside while everyone else partied. Today we're home because of bad weather, and we've both battled boredom. Without his disability he'd be with friends, or watching something stupid on tv, or just reading and hanging out. Maybe he'd go the ten miles from our house to the beach to surf. Or maybe all of that is just a fantasty, and he'd really be in a drug rehab somewhere. See why I avoid these areas? The voice in my head has never been a reliable tour guide.

I wrote the first half of this yesterday, and now 24 hours later I'm in this chair looking at my garden again. Daniel is in the living room with the same toy trucks and a glass of Pediasure. We're waiting for a potential caregiver to come and interview. She's 30 minutes late. I feel calmer today. I hope Dan does too. He seems to. There's no groaning from that side of the room, and he's making his humming sounds that mean he's content.

In this life I've learned that I have to be able to change plans without too much annoyance. It only makes me surly. So, still no caregiver here. No returned texts. I've moved on to the next on my list. I think we'll make it to the pool later on after all. It's a beautiful day. No mournful yearning here at this moment. No backpacks full of tomorrow's gear.

Friday, February 14, 2014

Love and the Necessity of Hope

I dreamed about a love story just before waking today. The details are fading now, but there were two sisters and one man. He was remarkable. Strong, handsome, caring, spiritual, funny, absolutely perfect. In the end, he dies. The dream ended like a movie, with the credits running. The title of the dream/movie: Yearning. I woke up with that word in my head.

It was an interesting wee hours dream for Valentine's Day. It left me feeling very melancholy. Perfect love has died. Two sisters are heartbroken. Traditional dream interpretation tells me that the three are aspects of myself.

My energy is returning. I can lift Daniel again. I can eat just about everything, after a long period of only tolerating bland food. The depression is still lingering, though. I read once that depression is the impression left by fear. I was out of my mind with cancer-fueled fear and worry throughout November, December and January. It's going to take awhile to bounce back, and maybe I will be a different me when I land. Will my sister-self emerge, wounded but walking? Has my masculine side withered? I've always held it together, but now...

One of my students said to me today, "You're not the same since you came back." I asked how I'm different, and she said I'm not as cool. I'll second that. Sometimes the blues are uncool.

There are things to be grateful for. I'm thankful that I have insurance that paid for the majority of my surgery and hospital costs. Still, my 20% is raining on my plans for paying property and income taxes this year. I think financial fear ranks right up there with health scares. I also want to take Daniel to Austin, Texas this summer for a communication camp that uses the Rapid Prompting Method. It's not free, however, and I may not be able to make this happen. Do I put down a non-refundable deposit next month and trust that the rest will come? I am unsure. I was so excited about it just a few months ago.

A newsletter came yesterday from a holistic doctor in my area. She writes about the necessity of hope in regaining health. I know this to be true. Without a sense of hope and expectation, life feels flat. I've been fortunate enough to have always been able to rustle up some hope for the future. Lately, not so much. All I can do is try to be hopeful that I'll regain hope. I miss my optimism.

Last night in the middle of journaling about my sense of broken dreams, I did a gratitude list. Midway through the list of disappointments I was writing down, I realized I needed to switch gears. Next to the  negatives about money and loneliness, were my list of things that are good. I've also been saying 40 day prayers since the school year began. From Jesus' 40 days in the desert, 40 days of rain for Noah,  to the Israelites 40 years of wandering in the wilderness, this number is often in the spotlight. I'm putting my energy out there and affirming that specific things in my life are going to get better.

I see the results. My first prayer was focused on finding the right school/people/program/community for Daniel and our family. I always end the prayer with the caveat "according to Thy Will", because I know that I'm not in the know about all the options out there, and I might not have even conceived of the best for us, or what's needed for our growth. Not long into the prayer, our physical therapist told me that she's interested in a therapy school similar to the one in the corners of my mind. She connected me with a family who are also interested. Last week our caregiver went on an interview and met a mom who uses the Rapid Prompting Method that I've been researching and learning. I have her number.

There are interesting, positive connections happening, but still my hopes are not high. Not in this moment, anyway. To say they are just to avoid dark feelings would not be authentic, and wouldn't force a shift in my overall sense of well-being. I'm open to unexpected good. I want to believe. I'm willing for a change to come. I guess in times like these, that's all I can hope for.

Friday, August 30, 2013

A Life with Purpose

I did a bit of writing this summer, and the Association for Research and Enlightenment published the piece I wrote on Daniel's birth.

Here it is:

Sunday, May 26, 2013

Good Things

We kicked off Memorial Day weekend by giving Daniel's new neck ring a try. We have a winner! He was able to move around the pool independently, something he loves. After about an hour and a half he crashed on the porch for a long nap stretched out on a comfy chair. It was good.

I've tried something new for the pool every year for the past several, and this ring was recommended by a good friend who uses it with both her girls who have severe disabilites. To say it's a godsend is really an understatement. The feeling of freedom he has in the water is worth every penny I paid for it, and it was a lot less expensive than the big yellow contraption I bought last year that didn't pan out well.

With his sister trying the new neck ring for the first time

In other news, we have a new physical therapist and a state-of-the-art hydaulic stander on the way. This is a pic of he and I after school/work Friday evening trying it out. This doesn't capture the huge smile that he had when he first stood in it, but believe me, the boy loves it.

Physical Therapy on a Friday in May

We're counting down the days until break (June 7 is our last day) and taking note of all these blessings, too. Here's to summer!

Saturday, July 30, 2011

Deja Vu all over again

Daniel was a small baby. He finally reached the ten pound mark at one year of age, and that first year I put most of my energy into getting him there. I pumped milk, added powders to make it heftier calorie-wise, and supplemented with formula--the kind that was easily digestible (which, if you're familiar with special formulas, you'll know was not pleasing to the nostrils).

Turns out, Daniel was just programmed to be on the tiny side. At almost thirteen years of age he's only quadrupled that 12 month weight. He's 42 pounds and a few ounces. He still drinks most of his meals. He will eat well for the school staff, but not for mom. I don't sweat it. Every now and then I offer him food, and sometimes he takes it. Most of the time he smiles and raspberries it back at me.

The early days of trying to plump Daniel up came back to me as Rich started treatment for cancer two weeks ago. He had all of his teeth pulled, so he can't chew. Radiation is going to cause weight loss, and he'll need to consume about 2100 calories a day just to maintain his current weight. He may have to resort to a feeding tube before it's all over, but knowing my strong man, there's a good chance we'll avoid that step.

Back to my deja vu. I'm measuring and counting and coaxing Rich to drink the shakes and eat the chicken noodle soup I make for him. I'm using supplemental whey protein in the shakes to prevent muscle wasting. It's going well so far, but realistically, we're only into week one. We've got six more to go.

I'm starting to hum 'Circle of Life' in curiosity at how my life does just that. It circles. That isn't necessarily a bad thing. I know that we'll manage this, just like Daniel and I did twelve years ago when we were hitting the scales every other day at the peds office, in between therapies and other specialist visits.

I guess that's one of the silver linings of living with disability. You develop a tenaciousness that serves you pretty well when things go south. Then again, maybe I just haven't hit the wall yet. I'll let you know.

Saturday, June 18, 2011


The other day my cousin Sue shared a song with me via Facebook. It's called Blessings, by Laura Story.

One of the lyrics is, "this is not our home." That brought back a poignant memory from when Daniel was just over a month old.

We had no diagnosis at that time, other than microcephaly. We'd been to the geneticist, all tests were normal. They told us to "wait and see". He could develop normally. Some people just have small heads.

On a beautiful, sunny day in February our pediatrician called after a visit with the geneticist. She said that the two had talked and decided we needed to be admitted for Failure to Thrive.

Wait. He's gained weight! That's not what Dr. P says. No! He has! I have it written in my log. I'm on the phone outside while Melody plays on the porch. My mom and dad are still in Florida following his birth, helping us out everyday. I don't want to leave. I DO NOT want a hospital admission. My son is FINE.

The decision was made. They admitted us to the Children's Hospital to monitor my milk supply (it was fabulous, I felt I could get side work as a wet nurse), keep close tabs on his weight, and maybe do a few more tests to see what was up with this tiny boy with the small head and big ears.

I was so sad. I just kept repeating to myself "this is not our real home." (Meaning earth.) I was terrified.

During our stay I kept my log of his weights, weighing him before and after every feeding. He DID gain, although not alot. Still, the pediatrician didn't want to let us go home after 3 days because the nurse's notes didn't reflect what my notes did.

I showed her my record again, and we weighed him once more. We went home late that evening. I think I let go a little, too. I knew then that Daniel would not be a typical boy. I knew in my heart that we were going to face hard things.

In the song she asks, "What if the trials of this life, are your mercies in disguise?"

I do know that what looked unbearable to me at that time turned out to be just fine. Are there struggles? Yes. But the happiness definitely outweighs them. He enjoys life, we enjoy him. That's all I know for sure.

Sunday, June 5, 2011

Pool Time

Daniel loves water. He has ever since he was a fussy baby. When he cried, all I had to to was sink into a warm tub of water with him and he'd settle right down. Bathtime is still a favorite for him, and he soaks the floor with his splashing (thank god for tile!). Today we stretched, kicked, floated and splashed our way through a Sunday afternoon. It was bliss.

Saturday, June 4, 2011

A Typical Saturday Morning

Daniel loves cars, trucks, anything with wheels. Here he is with one of his Easter basket gifts. He examines them, bangs them on the table, throws them, and starts all over again. When he's tired, he lays his head beside them. Note the overturned ambulance above his resting head.

I love lazy Saturday mornings with my boy when we're the only ones awake in the house. All is well in our world.

Saturday, May 21, 2011

The Boy in the Moon

I wrote my last post, Gifts and Gratitude, after listening to part of an NPR author interview with Ian Brown. Brown discusses life with his disabled son, Walker, and his book, 'The Boy In the Moon'.

The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.

After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.

I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.

Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!

There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)

When I first read the term "disability masochist",  my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though. 

In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.

Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.

There are more compelling discussions that his book can and should bring about.

I love Brown's words on page 270.
     "These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a  L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."

Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.

Monday, April 18, 2011

Recovery Time

Over the years, the main physical trouble that Daniel has dealt with is coughing and congestion that linger on. When I hear the first sniffles, I know that we'll soon be getting the nebulizer out to tackle his cough. He's never been hospitalized because of it, and it's never progressed to pneumonia. The trajectory it follows is familiar territory.

Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.

Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.

For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.

Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.

I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today! 

Saturday, April 9, 2011

Bring on the buffet!

Yesterday I got a call from Daniel's school nurse. He started middle school this year, so everyone is still getting to know him. She asked if it were ok for him to have "table food". Sounds like a strange question to ask about a twelve year old, but Daniel has had an aversion to solid food for years. He mostly likes to drink his meals! I send in things like sweet potatoes, oatmeal, stuff that the occupational therapist helps him eat. Some days are better than others, but he's always done much better for the school staff than me.

I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.

This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?

Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
     There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities. (Changed by a Child p.71)

Enjoying a sip of water from a straw.

Ignoring oatmeal in preference to his hand.

Then it's on to ya-ya-ing hand to mouth, and playing with some favorite toys.

I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.

     Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)

Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on. 

Sunday, April 3, 2011

Back to School

Today was our last day of spring break. We had ten days off and managed to divide it pretty evenly between time alone and time together. Melody and I shopped and had lunch on the first day of break. The following week Daniel took a trip downtown with me to pick out a new walker.

All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking. 

We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.

The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.

Now I'm counting down the days until Easter!

Friday, March 25, 2011

Walking Tall

Wednesday we met with a new doctor for Daniel, a pediatric physiatrist at UNF, and got her input on his  AFO's (leg braces). On hand was his hippotherapy PT, aka the Queen of AFO's. I'm so glad we did this, because they were able to spend a lot of time with him, watching him walk, debating on the best brace for him, and also checking for any tightness in his muscles (he has very little, and treating it would most likely make him crumple over).

The verdict is that he needs a more flexible AFO. The Queen says his current ones are like ski boots. They don't allow him the movement he needs when he's walking. Both she and the doc also want to see him using his walker more, but we need an updated model since the one we have is seven years old and way too small for him. We haven't bothered with a new one because our PT at school transitioned him to hand-held walking several years ago. The problem is, he has way too much of a drunken swagger at times.

Since he was casted and measured just a couple of weeks ago by the orthotist who visits the school, I had to race to see if I could change the prescription before the new AFO's were made. In a rare stroke of perfect timing, I arrived at 4 p.m. while they were still open and available to recast him and make the changes to the script. We scored!

This is a parade of the AFO's he's had over the years. Our new PT, the Queen, feels that he might even be able to walk with a pair that end at the ankle. We're going to try some off-the-shelf shorter ones that we can buy reasonably cheap. Go Dan!

This is a video taken last June when he graduated from fifth grade. He's doing pretty well with the hand-held walking, here. He often tends to pull down on our arm when he walks like this, though. I think he knows better than to try that with his aide!

Another cool thing about this visit was that the physiatrist mentioned how much he resembles someone with Rett Syndrome. That's always been the closest diagnosis I could come up with to match Daniel's list of characteristics. Years ago he tested negative for it, which isn't surprising since it mostly affects girls, and boys with the deletion generally don't live long. I'm wondering if the missing piece of his genetic puzzle lies somewhere close to the MCEP gene, just not exactly the same as the one that causes Retts. We see our geneticist next summer, so maybe we'll get some insights there.

All in all, a good visit, good connections with new people, and hopes for improved mobility for my boy!

Monday, March 21, 2011

Another First

Until very recently we haven't had any outside help with Daniel's care. My parents are like a second mom and dad, but they live 900 miles away and we only get to see them twice a year. Daniel was placed on the Florida Medwaiver waitlist in the spring of 2003, and finally stopped waiting in September 2010. He only earned his rightful place through a crisis waiver after I was in a car accident and my lifting was curtailed.

The most important services we have now are respite and personal care for Daniel. This is huge. I usually get him up and out of bed, dressed, fed and ready for school before I leave for work at 7:20. After that my husband takes over and puts the finishing touches on his hair, brushes his teeth and gets his afo's on before transferring him into his wheelchair and rolling him out to the bus.

Today, Miss Rita came at 6:30 to help. We had coffee together until Daniel woke up, then I kissed him and got a few of his early morning smiles. I told him she'd help him a little more slowly than mom usually does. He's used to her because she's been coming over to provide respite since November, and even stayed two nights with him while I went out of town to celebrate my birthday. This was the first time I've been replaced for the morning school routine, though.

I love taking care of him, dressing him, feeding him. To me, it's a privilege to be that close to someone this far along in their lives. He's twelve, after all. But the whole point of the home and community based waiver is to give me enough help so that I don't have to turn to any sort of institution when it comes to his care. I'm forty-nine. I want to preserve my back muscles as long as possible so that I can do what I love, which is take care of my son.

My husband, his step-father, is able to get him to do things that I can't, like nod his head for yes. Daniel and I have had our own unspoken language for so long that he sees no need for that with me. So, Rich works and plays with him in the morning after I'm gone. He talks, Daniel listens. They have a great rapport. Rich broke his back in 1994, and lifting is difficult for him. So, we have a system where I have him up so that the only heavy lifting he does is transferring him into his chair.

To me this is a big step towards independence for all of us. It's time for me to share!

Sunday, March 20, 2011

Looking Back

Since I'm now blogging for free, I'm going through the old website and making sure I have a hard copy of things before I shut it down permanently. I won't miss spending the yearly fee to keep it going, especially since it hasn't been "going" for several years.

I had to open the site builder to view pages that aren't published anymore, and I read Melody's poems (all two of them, she now tells me she HATES poetry--how is it we're related, again??) I love the picture we took for her editorial section.

There she is, writing one of her two poems, Mystical Magic:
Mystical Magic
I love the day
I love the nite
I love how the lake sparkles
I love the mist in the morning when I wake up for school
I love when the rain comes down
I love when it is nite and the flame of a candle shines
I love the first day of school

By Melody Murray, age 7

Here's the other of the two poems she wrote, this one for Daniel:

Angel of Love
by Melody Murray 2003

I love the way he smiles
I love the way he sleeps
I love the way he giggles
I love the way he sees
He always sees beautifully
He is cute and cuddly
He is my baby

I took the poetry sections down several years ago, so I'm going to have to do a lot of printing to save them. It's kinda bitter sweet taking the site apart. It was a great outlet for me for a long time. It helped me connect with other moms way before Facebook. I write more than I talk, so it was therapeutic and fun. The blogging forum is more immediate and less formal, though, and I'm looking forward to diving in.

I'm grateful Daniel was born in the computer age. It would have been very lonely without the micro listserv, the first that I joined when he was only a few months old. Later there was Angelbabymoms, and then Molehill Moms. I've met some incredible people through the internet, learned a whole lot that helps me navigate through the disability world, and just been able to be a more social version of my introverted self without having to leave home.

Here's to change!

Saturday, March 19, 2011


This is my first blog. For a few years I kept up a website,, and wrote essays and interviewed other parents of kids with special needs for a section I called, appropriately, Parent Profiles. My last note was in May 2007 when I wrote about trying to get a communication program going for Daniel. It's hard to believe that four years have passed, and even harder to imagine that he's twelve years old!
In true synchronistic timing, I started this blog the day that Daniel's first communication book came home from school with him. I don't know why it took so long. Between workshops on communication techniques, many emails between myself and assistive technology, SLPs and teachers, there has been a lot of communicating about communication. We finally have what is essentially a picture exchange system (PECS).

Looks like both Daniel and I will be communicating differently. I'm finally moving over to the blogosphere, and he has a handy dandy workbook. We're in sync, at least!