I spent (financed) big bucks on a Tempurpedic mattress for Daniel a couple of months ago so that I could move him out of his crib and into something large and comfy. The thinking was that squirm worm would be less likely to end up on the floor due to the cushiness of the mattress and the way it makes you want to stay put as you sink in.
Well, he slept at least part of the night on the floor next to his bed last night. I found him there this morning curled up. Looks like his super rolling powers are going to necessitate a rail of some sort. Although, one morning he was at the end of the queen size mattress nearly ready to roll off. It's close to the floor, so he can't get injured, but it's no fun sleeping on carpet.
In similar news, my mother-in-law has been in a nursing home since she fell on Christmas day. She'll be coming home Monday and we're in preparation mode trying to get all of the things she'll need to keep her from falling again. My step-son will be rooming with her, we bought a shower chair, toilet lift, and dusted off the walker that hubby used when he broke his back. Prayers for her safety are welcomed.
Speaking of my husband, he was pronounced cancer free in December, but now he has a new diagnosis as a result of the radiation that rid him of it. Osteoradionecrosis. Areas of his jawbone are dying. He's in a lot of pain and has to have 20 hyperbaric oxygen treatments followed by surgery, and ending with 10 more hbot. Again, prayers are appreciated more than you know.
My former husband and I owned a hyperbaric oxygen clinic that's now defunct. In many ways my life is full of irony.
I was able to meditate this morning while everyone slept, and I do feel the strength of knowing that I can't control any of this, and I can and will survive it.
That's my update. Feel free to appreciate your own bundle of troubles as you go, "Damn, that sucks!" They say if we put all our problems in a pile along with everyone else's and were told to choose, we'd keep our own. I can see that.
Time to keep on keeping on!
Saturday, February 4, 2012
Monday, January 30, 2012
The Key to Survival
In past posts I've talked about my fantasy of communal living for families who have kids with disabilities. The happenings at L'Arche are always on my radar. I also found Noah's Ark in Florida during one of my web surfs.
Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.
When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.
Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.
I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)
Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.
I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).
My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.
How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.
Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.
Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.
When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.
Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.
I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)
Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.
I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).
My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.
How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.
Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.
Saturday, January 28, 2012
What I pray for
Would I change him? I would and do provide him with the things that help him in this life, such as the medications that manage his seizures. I don't want him to suffer, but I have very limited control over that for anyone. I can only do what I can do.
I try new techniques to help him express himself and communicate. I advocate for services and connect with people who have something to teach and share that might help me be the parent he needs me to be.
I may be wrong, I have been often, but my philosophy is that he came into the earth with a mission. I was raised by parents who embraced the Edgar Cayce readings, and so my mind is of the persuasion that every soul is eternal and here with a purpose.
So, no, I'd have to say that changing Daniel is not something I fantasize about or wish for. My prayer for him is that he be surrounded by and experience happiness and love, contentment and joy. This morning we both seemed to be hitting the mark.
Sunday, January 22, 2012
When They Were Small
These photos were taken sometime in 2000 at Rockome Gardens in Illinois. My kids are two of the best things to happen to me in my half-century here.
Friday, January 20, 2012
Completely Normal
The microarray test, that is.
So, from here, no more testing until we can look at the entire genome. The capability is there, but scientists/doctors are not able to interpret it yet. That's several years down the road. And, as the counselor pointed out this morning, Daniel's issues may not be genetic.
"We may never know what caused Daniel's specific difficulties," the counselor said. I was expecting this result and some form of that statement.
Completely normal. I'm gonna go drink coffee and ponder that.
So, from here, no more testing until we can look at the entire genome. The capability is there, but scientists/doctors are not able to interpret it yet. That's several years down the road. And, as the counselor pointed out this morning, Daniel's issues may not be genetic.
"We may never know what caused Daniel's specific difficulties," the counselor said. I was expecting this result and some form of that statement.
Completely normal. I'm gonna go drink coffee and ponder that.
Thursday, January 19, 2012
Still Wondering
I called the genetics office today to see if Daniel's results from the microarray are in. I was put on hold four times (and man, is the elevator music loud on their system) and finally the secretary talked to me.
"I can see that the results are in, but the counselor isn't available to talk to you right now. She'll have to get back with you."
"Will that be tonight or tomorrow? Because if it showed something, I REALLY want to know as soon as possible." Hell, it's only been thirteen years.
"Ok, she's in clinic for the rest of the day, but I'll send her a message and let her know that you're anxious for the results."
Since it's after six, she must be waiting to contact me. At least I'm off tomorrow and can start calling them myself bright and early. I don't want to wait until Monday, and I know how to be a nudge.
"I can see that the results are in, but the counselor isn't available to talk to you right now. She'll have to get back with you."
"Will that be tonight or tomorrow? Because if it showed something, I REALLY want to know as soon as possible." Hell, it's only been thirteen years.
"Ok, she's in clinic for the rest of the day, but I'll send her a message and let her know that you're anxious for the results."
Since it's after six, she must be waiting to contact me. At least I'm off tomorrow and can start calling them myself bright and early. I don't want to wait until Monday, and I know how to be a nudge.
Monday, January 16, 2012
Change
I'm enjoying Elizabeth's post this morning, and the song she shared is playing as I write.
My last post was about changing some things in myself. I used to be much more open. Somewhere along the way I started editing myself. I don't want to offend people, and I want to fit in and be liked. So alot of times I leave out parts of my story that I think might sound too weird, New Agey or out of the mainstream. I don't usually get into politics. I'm vocal at home, and with people who I know won't challenge me. That's pretty chicken shit.
I admire the outspoken. I was listening to the radio on the way to work the other morning and the DJ's were talking about some celebrities who identified publicly with a political party, and how they're doing themselves a disservice. "That's why you'll never know who we're voting for," the DJ ended with. It made me think. It's good to play it safe if you want to maintain popularity on the radio or in life. But it's the people who speak up that get our attention and really force us to figure out where we stand. And it's how true allies and friendships are formed.
I'll start with one thing. I believe that we are eternal, and that we have some choice regarding the life we enter and the people whose lives we'll be involved with.
Before Daniel was conceived I was working on a book proposal. ARE Press published my book 'Walking the Spiritual Walk' in 1994, and I wanted to follow it up with one about conscious conception and preparation for parenthood. One of the chapters I researched was the idea of conception mandalas. I read about them, and then made my own.
I read these books while I prepared the sample chapters and tried to live what I was writing.
The proposal was being considered by a publisher, and I had people on board to add their support on the back cover. Then Daniel was born and there was no time to write. I figured I'd come back to it later.
My first book was largely about my marriage to Daniel's dad, and when that didn't work out, I really lost faith. I questioned many of the things I thought I'd figured out. I felt very much like a failure. It shook my foundation, for sure.
I found out that life isn't as simple as I once imagined it to be. It's not neat. It's messy. It hurts. But if we aren't honest about our mistakes, our flaws and our Truths, we are stuck.
Here's to the Martin Luther King Jr.'s of the world, and all those who aren't afraid to speak their truth.
My last post was about changing some things in myself. I used to be much more open. Somewhere along the way I started editing myself. I don't want to offend people, and I want to fit in and be liked. So alot of times I leave out parts of my story that I think might sound too weird, New Agey or out of the mainstream. I don't usually get into politics. I'm vocal at home, and with people who I know won't challenge me. That's pretty chicken shit.
I admire the outspoken. I was listening to the radio on the way to work the other morning and the DJ's were talking about some celebrities who identified publicly with a political party, and how they're doing themselves a disservice. "That's why you'll never know who we're voting for," the DJ ended with. It made me think. It's good to play it safe if you want to maintain popularity on the radio or in life. But it's the people who speak up that get our attention and really force us to figure out where we stand. And it's how true allies and friendships are formed.
I'll start with one thing. I believe that we are eternal, and that we have some choice regarding the life we enter and the people whose lives we'll be involved with.
Before Daniel was conceived I was working on a book proposal. ARE Press published my book 'Walking the Spiritual Walk' in 1994, and I wanted to follow it up with one about conscious conception and preparation for parenthood. One of the chapters I researched was the idea of conception mandalas. I read about them, and then made my own.
I read these books while I prepared the sample chapters and tried to live what I was writing.
The proposal was being considered by a publisher, and I had people on board to add their support on the back cover. Then Daniel was born and there was no time to write. I figured I'd come back to it later.
My first book was largely about my marriage to Daniel's dad, and when that didn't work out, I really lost faith. I questioned many of the things I thought I'd figured out. I felt very much like a failure. It shook my foundation, for sure.
I found out that life isn't as simple as I once imagined it to be. It's not neat. It's messy. It hurts. But if we aren't honest about our mistakes, our flaws and our Truths, we are stuck.
Here's to the Martin Luther King Jr.'s of the world, and all those who aren't afraid to speak their truth.
Monday, January 9, 2012
Blue Monday
I wasn't at work very long this morning when I got one of the calls I don't like. It was Rich on the phone telling me Daniel was in the middle of a big seizure. His care provider was also still there, and this is the first time she's seen him seize.
I told Rich where the Diastat was (they already knew, but in times like these it's good to have the emergency response mom on the phone giving directions). I was talking to him while Rita gave it, and listened while he described the shaking and unresponsiveness.
My principal was at my door needing someone to help with a parent whose kid has ringworm. I got off the phone and talked to her and let the parent know what to do. Then I called my most wonderful boss, a nurse who cared for her autistic sister for many years. She found a float nurse to replace me right away.
In between calling a parent whose kid just vomited, and giving a few routine meds, I touched base with Rich to make sure Daniel was alright. He was sleeping in Rita's arms.
Within an hour of Daniel's seizure, I was back home. He's crying a little off and on and resting. He doesn't have a fever or any other signs of illness, so I'm pretty sure he may have lost some Topamax at some point (he likes to spit it out, and I'm not always super-diligent about checking his mouth after he takes it).
He's lying beside me now and seems pretty calm. I'll give some extra Topamax today and hope that this is the last of the Big Shakes for a long time.
I'm lucky I have an understanding boss, a great care provider and a husband who knows what to do. Still, I'm gonna eat a crispy English muffin with lots of jelly and wallow a little. It is Monday, after all.
I told Rich where the Diastat was (they already knew, but in times like these it's good to have the emergency response mom on the phone giving directions). I was talking to him while Rita gave it, and listened while he described the shaking and unresponsiveness.
My principal was at my door needing someone to help with a parent whose kid has ringworm. I got off the phone and talked to her and let the parent know what to do. Then I called my most wonderful boss, a nurse who cared for her autistic sister for many years. She found a float nurse to replace me right away.
In between calling a parent whose kid just vomited, and giving a few routine meds, I touched base with Rich to make sure Daniel was alright. He was sleeping in Rita's arms.
Within an hour of Daniel's seizure, I was back home. He's crying a little off and on and resting. He doesn't have a fever or any other signs of illness, so I'm pretty sure he may have lost some Topamax at some point (he likes to spit it out, and I'm not always super-diligent about checking his mouth after he takes it).
He's lying beside me now and seems pretty calm. I'll give some extra Topamax today and hope that this is the last of the Big Shakes for a long time.
I'm lucky I have an understanding boss, a great care provider and a husband who knows what to do. Still, I'm gonna eat a crispy English muffin with lots of jelly and wallow a little. It is Monday, after all.
Saturday, January 7, 2012
Just a Quickie
I found an app yesterday for Daniel's new iPad, and this morning he's already used it appropriately! It's called Tap to Talk and it has albums with large, colorful pictures that you touch lightly (aka tap) and a voice says what the picture represents. This is big.
Daniel just touched "I need to go to the bathroom", so that's where he is now, and I'm off in a few to bring him back for more coffee talk.
This is great! Thanks again, Ken and Heather!
Daniel just touched "I need to go to the bathroom", so that's where he is now, and I'm off in a few to bring him back for more coffee talk.
This is great! Thanks again, Ken and Heather!
Monday, January 2, 2012
Dreams
The blog that inspired me to jump on the blogging bandwagon (later than most) is written by Lesley. Here is her latest post.
I have similar feelings, fears and longings rolling about in my mind. I want a simple, happy, peaceful life. For Daniel. For myself and the people closest to us who love us and keep us going. Like Lesley, I don't dream about vacations or having a hot body with a wardrobe fit to kill. It's not that I'm "above" those things, whatever that means. It's just that I have this teenage boy in my life who shifts my perspective and helps me clarify what I really, really want as our experience.
Lesley says this, "I sense that this was all written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot."
She writes that Sarah is losing some of her skills, and without a diagnosis, Lesley isn't sure what the future holds in terms of prognosis.
Because of Daniel I have so many people in my life who deal with uncertainty, with more unknowns than most parents. True, none of us knows what twists and turns our lives will take. Not many people plan on cancer or life altering accidents. But this ride is different. If you aren't on it, I can't really fully explain the experience. It's something you have to live.
I do know that having a community of friends who "get it" makes all the difference. I thank you all. I'm ready to do it again in this New Year, this circa 2012. Here's to it!
I have similar feelings, fears and longings rolling about in my mind. I want a simple, happy, peaceful life. For Daniel. For myself and the people closest to us who love us and keep us going. Like Lesley, I don't dream about vacations or having a hot body with a wardrobe fit to kill. It's not that I'm "above" those things, whatever that means. It's just that I have this teenage boy in my life who shifts my perspective and helps me clarify what I really, really want as our experience.
Lesley says this, "I sense that this was all written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot."
She writes that Sarah is losing some of her skills, and without a diagnosis, Lesley isn't sure what the future holds in terms of prognosis.
Because of Daniel I have so many people in my life who deal with uncertainty, with more unknowns than most parents. True, none of us knows what twists and turns our lives will take. Not many people plan on cancer or life altering accidents. But this ride is different. If you aren't on it, I can't really fully explain the experience. It's something you have to live.
I do know that having a community of friends who "get it" makes all the difference. I thank you all. I'm ready to do it again in this New Year, this circa 2012. Here's to it!
Sunday, January 1, 2012
The River of Stones
Saturday, December 31, 2011
Friday, December 30, 2011
Is it 2012 yet?
I just finished a long walk with Daniel around the neighborhood. I tried to breathe a little more deeply and let some of the chaos of the past couple of weeks go. It's been good, not so good, and at times a bit ugly.
First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!
Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!
On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.
I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.
Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.
After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.
So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.
We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.
Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!
First of all, thank God my parents have been here since Thanksgiving. I don't know how we'd have survived without them. We'd definitely be less well fed and the house would not be as organized. I love those two with my whole heart and every cell of my being! Not that I'm dramatic or anything!
Both of my kids had birthdays in the past week. Those were good days. Celebratory. Fun. I now have both a 16 and 13 year old living under my roof, and I'm about to hit 50. Let the good times roll!
On Christmas day we went over to pick up Rich's mom who lives alone since her husband of 64 years died this past August. She didn't answer the door, and the newspaper from the day before was still outside. Not good.
I yelled through the mail slot and heard her weakly say, "I'm coming," just as we got the stubborn key to turn in the lock. She was on the floor in her pajamas, and had been there for awhile.
Long story short, she was hurt, but not badly. We ended up calling rescue and having her admitted to the hospital where we found out she has a few issues that need immediate attention. Her rotator cuff is torn, and she's a little more confused than usual.
After a few days as an inpatient, she was transferred to a skilled nursing facility for physical rehab and nursing care. The main point that I must relate about all of this is that she is one tough, kind, positive lady. She's thankful, polite to all, and she does not complain. I could learn a lot from her. When I think of how well she's handled all of this, it really tears me up. I love that woman.
So, you can perhaps imagine that life has kicked it up a few notches lately. Daniel is great, he got over a cold in two days time and only a few nebulizer treatments. Melody took a little longer to get over hers, and I stayed healthy through it all. My mom and dad are strong like bulls, even though they have a lot of pain to deal with at almost 77 years of age.
We have a few more nights together, then we'll all be back to our old routines. For now, I'm focusing on ringing in 2012 with as much chutzpah as I can muster.
Here's to all of you out there struggling, yet having fun and making this crazy life work one way or another! If I don't post again until then, Happy New Year!
Tuesday, December 27, 2011
Sixteen!
My daughter turned 16 today. If I could choose to help her learn just one thing, the above would be a pretty good choice. Truth be told, she teaches me more than I'll ever teach her. She has been one of Daniel's constant companions and best friends. Love, love, love that girl. We took a day trip with my mom to Cassadaga, Florida.
My mom and my daughter.
I am quite possibly at my nerdiest in this picture. It's one of few taken with my daughter today, so I'll bury my ego and include it here!
Friday, December 23, 2011
Thirteen!
Daniel unwrapped the new iPad today, and his big sister helped with selecting the first few apps to get him started. Cool coloring app, and one specifically for autism that involves cause and effect. These were taken at the end of a long, very fun day spent in St. Augustine. He was tired, but attentive.
He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!
He (and I) are very lucky to have her to help us with the technical stuff. Here's to big sisters, Mission: iPossible and Daniel's thirteenth birthday!
Sunday, December 18, 2011
What keeps you going?
What is it that keeps you going as you care for your child full-time? Part of my inner pep talk comes from a book I read when Daniel was a baby, Changed by a Child, by Barbara Gill. When I'm really tiring out and starting to wonder how I can keep up, I think of her words.
She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."
"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 know the intimacy of placing food in another person's mouth...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."
When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.
I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.
It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.
Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.
So, back to my original question. It's one I really want answers to. What is it that keeps you going?
She writes, "The physical acts we perform for our children easily become tiresome chores. Our son is seven and we still have to dress him; at fourteen we are helping with the shampoo, the bath, putting the special lotion on the very dry skin. He is well beyond age one and we are still feeding him and will be for years to come..."
"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 know the intimacy of placing food in another person's mouth...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."
When I hear him calling me on a Saturday morning and I'd really rather lie in bed awhile longer, that passage often comes to mind. Surrender. When I give up my ideas of how things "should" be, or might have been, or how much better or easier someone else has it, I can get into the zone. He needs me. He needs me every single day in very basic, life sustaining ways. I don't want to glorify his disability. Yet I also want to shine light on how beautiful our relationship is. It's a balance I'm aiming for.
I could easily let my thoughts overwhelm me if I dwell too long on just how dependent Daniel is on me. I am responsible for all of his physical routines such as eating and bathing as well as moving and lifting him. I support him financially. My job pays the bills, and the little I get from other sources wouldn't even cover a months worth of diapers and food.
It's not good to be without a back-up, but that's where I am right now. I have a little bit of state help in the form of a personal caregiver who enables me to get out the door in the morning for work before his school bus comes. If he's sick, I'm the one who has to stay home and miss work. The buck stops here every single time. That's ok, and yet it's not. I know I have to build a network and have supports in place. That's a topic for another post, though, and one I've touched on before.
Today I'm just grateful that I read that book when he was so small. It really affected the way I frame the experience Daniel and I are living. Is it stretching things to say that it's a privilege to be so enmeshed in caring for him? I don't think so.
So, back to my original question. It's one I really want answers to. What is it that keeps you going?
Friday, December 16, 2011
Thank you, Mission: iPossible!
When I started this blog my first entry was about communication. We were beginning to try a new picture system in school last spring, and I posted some photos of Daniel attempting to use it.
The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.
Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.
Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible
I entered. There was a two week wait, after which a random generator picked two winners.
And...you guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.
Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!
The picture book turned out to be too complicated and cumbersome. Even I, with somewhat normal dexterity, had trouble finding the page and picture I was looking for. We bagged it.
Then we started private speech and language therapy. Daniel's therapist suggested an iPad. Hmmmm. The cost of one is pretty steep. I told Dan's dad to save any Christmas or birthday money he receives for him (Daniel will be thirteen on the 23rd) and that I would do the same. I figured we might be able to pool enough to buy him one for his birthday/Christmas present.
Then I stumbled upon a blog that was giving away iPads. It's over here: Mission: iPossible
I entered. There was a two week wait, after which a random generator picked two winners.
And...you guessed it! Daniel won! I'm very excited about the potential that the communication apps have for him. It's also really good to end the year on a positive note like this.
Thanks, Ken, Heather and Mission: iPossible! Stay tuned for stories and pictures of Mr. D and his new state of the art communication tool!
Tuesday, December 13, 2011
Road Trip
We loaded up the van and went to Gainseville yesterday. Destination: The University of Florida and one of the country’s experts on Angelman Syndrome.
The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.
Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.
Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.
“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.
Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.
Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.
Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).
The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.
We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.
The trip started in the pouring rain. As I lifted Daniel into his grandpa’s van, I caught a whiff of something. Then it was back into the wheelchair, and back inside for what would prove to be a fortunate bathroom break.
Thirty minutes into the trip, I realized I left his bag with his Pediasure, diapers, wipes, cups and bandanas sitting in the garage. Oops. Do we turn around? Do we wing it? We chose to keep going.
Daniel is a fussy eater. He prefers Pediasure from a straw, but eats lunch at school everyday. I’m always amazed that they check “ate 100% of meal”. But apparently he does. So, when we pulled into KFC I had strong words for my boy.
“You MUST eat now, because I didn’t bring any Pediasure, and your stomach will hurt if you don’t eat something. It’s just like a regular school day. You HAVE to eat. No water until you eat, either.” That last part didn’t thrill him at all, and he reached and reached for the water cup. Drinking is one of his favorite activities.
Mean mama prevailed (I guess I'm not quite as ineffective as I think). He ate his lunch, drank a little water, and we were off again.
Parking was fun. We went to the wrong garage and the wrong building. When we realized it, we had to move fast (in the rain) through three parking areas and into the right clinic. This involved my 76 year old father helping me lift the wheelchair with Daniel in it up four stairs (not four flights, mind you, just four stairs. Still.) We made it to the check-in desk five minutes ahead of time.
Dr. Williams came in wearing a mask since he’s battling a cold. I thanked him for not sharing his germs with us, and he proceeded to go through the list of tests that Daniel’s had done in his almost 13 years on earth (this was after we saw the nurse, followed by the nurse practitioner).
The doc left the room to confer with his NP, then came back with his pronouncements. “This is not Angelman Syndrome. He doesn’t have the Angelman gestalt. His main characteristics seem to be severe growth retardation and autistic behaviors. It's definitely genetic. Have you had the microarray analysis done? No? I’ll write a script for one and it may show some chromosomal deletions or duplications.” He talked some more genetics talk, and then we headed to the lab.
We found some milk for him to sip while we waited. The technician looked for a vein and tightened the tourniquet on his arm. Daniel suddenly grinned big. Is he enjoying this whole debacle more than me? Then he passed gas. Loudly. Forcefully. I guess that’s what he thought of the whole business.
Tuesday, December 6, 2011
Communal Living
I've been researching the idea of disability communes, aka intentional communities, since a couple of posts ago. I sort of like the idea at noahsarkflorida.org (links aren't working right now, sorry), but it's designed for families whose kids have mild to moderate developmental disabilities. I would love to see something for those of us whose kids are in the severe range.
I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.
Does this ring anyone's bell, or do I need to get my head outa the clouds?
I'm wondering who else out there would be interested in a living arrangement that includes entire families who have a severely disabled minor or adult child. I'm envisioning something like a large area of land, maybe several acres, with separate cottages and possibly a common area for meals.
Does this ring anyone's bell, or do I need to get my head outa the clouds?
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