Last week, I asked parents of older Dup15Q children the following question:
Looking back, what would you have done differently re: therapies, education, etc.? What would you do less of, more of, not at all, what do you wish you had done? What are the things you are most glad that you did for your child early on?
I got a ton of responses, and am reposting them here. I've tried to put them into categories, but of course there is some inevitable overlap. I've also changed any names mentioned, to protect privacy, and I have not corrected for spelling and grammar. I hope this is helpful:
Stress less and enjoy the little things focus less on what you can't change and appreciate what you can change your outlook on perfection! In my eyes my daughter is perfect!
Our daughter is now 21 and still doesn't have peer friends although she is very sociable. She loves older adults and I guess I'm still hoping she will develop friends so she is not alone when we are gone. Thankfully we have two older sibs who will watch out for her. Math is simply not an ability she can develop so we don't hold out hope there. She is a reasonably strong reader ( about 3rd grade level) so we try to reinforce that. Stranger awareness and animal safety are two other areas where we have had little success so would stress that early on..thanks for the great question
I would have started (toilet training) about 6. He was trained at 8. Empathy? Not even my husband can manage that so Albert is a real challenge in this area. If I am really mad, Albert sometimes says ''very very angry". Glad we did reading. Math is not a possibility. Music is a big yes. He does not pick up from those around him but can learn in an ABA format, though not til he was about 13. One to one and hand over hand works best for him. He is 27 now and his speech is still improving bit by bit. Our kids are all different but I just wanted to let you know what worked/did not work for us.
I agree (about waiting to start) the toilet training. I'm glad I have not allowed his disability to define him as a person, nor us as a family. Dup15Q is just one very small part of who we are.
We love her for who she is and she loves back unconditionally, which is such a gift! I wish we had had a diagnosis sooner, but it just didn't exist. I am grateful for everyone in her life that either just accepts her for her or tries to understand what her differences are. I cried a couple years ago when I found out about this group and actually talked to parents who had children like mine. I know this is wordy, but I hope is helps in some small way.
I am really glad we treated Cindy, 21 as normal as possible. She had responsibilities just like my other two girls. She has chores. I did not give up on academics as soon as teachers wanted to and I probably should have. She did not progress with writing and math especially after she was about seventh grade. She still loves to be read to but never learned to read herself. I wish I would have done more puberty/sex education stuff. I learned of good programs after she turned 18 and they don't work with adults. Still searching for that.
Therapies. Really wish they were as available then as now. We had Portage that finished when nursery started. I took Rose to special need and typical toddler groups. Looking back they were more of Q&A sessions to satisfy other peoples curiosity. Same with the endless appointments with health professionals who also wanted to gawp and ask questions. I would have liked to have fallen in sooner the professionals weren't offering any 'cure' would have stopped working full time if l had truly known what the big picture was for Rose. As you all know, idic is so rare that no one had seen anyone like her. I was led to believe she would be verbal but a late talker. Epilepsy killed her pre verbal skills. I listened to various friends and family telling me she was OK. That was based on how she looked. I wouldn't mind seeing that mild mannered sweet trusting Sandy again. She was quite popular with lots of friends....oh how times have changed!
That is a tricky one because as you all know we stumble through half of our days /weeks due to exhaustion and stress ....i am really glad though that i persevered in taking adam to as many places as possible to interact or observe interaction ,sometimes it was a nightmare but as he got older it became easier....i took him swimmimg most days in his early life as part of his therapy ,i believe this helped to strenghten his muscles without pain or anguish .I ensured he had spacial needs swimmomg lessons ,he swims like a fish now .His education was difficult as he is 16 now and still cannot read a book ,he can write his name but that is about it and i spent hours trying to get him to look at books ,colour and paint but he hated it .Looking back Peter would only do what he was happy to do and it would seem for a reason as it would appear that part was not going to change. He loves playing basketball ....indroduce your child to as many things as possible and when they find something they enjoy go with it . have lots of people around you and your child ,try not to focus all your energy on them save some for yourself cos you are gonna need it lol ......its a journey but we have lots of laughs the odd tantrum and thats just me but just dont forget to love and live your life x
TYPES OF THERAPY:
Our daughter is 4 1/2...saw a lot of core strength develop during aquatic therapy. We also feel hippo therapy continued with her core to help muscles for potty training. She loves music, would love to try a music class next! We try to find 'therapies' that don't 'feel' like therapies! Bottom line, I think developing 'friendships' ultimately helps in 'all' areas!!!
I'm glad we did music therapy. I'm not sure that hippo therapy mattered much. I'm both glad we did speech therapy and glad we recognized when it was time to stop. Mostly I'm glad that as soon as Alison started to enjoy her relationships with the peers in her class (freshman year of high school) we made friendships the focus of her IEP.
Music and music therapy have been great. We let her have routines, but do try to keep her flexible as much as possible. Wish I would have gone gluten free sooner, and she is only 5! I learn more everyday and really appreciate anyone and everyone's tricks or suggestions!
I would teach life skills earlier. Being accepted and having friends is so important. ; Don't underestimate what they know; start to let go early, involve them in camps, and most any activity is available somewhere in an adapted special needs format; they have abilities, step back and stop doing everything for them, they will surprise you; and I would have asked for more assistive tech stuff earlier in IEP process. Very few people are trained in assistive tech, laws are vague, there's so much out there
Special school would have been better from 7,not 10. Being told he had a BENIGN chromo duplication at 6,we had to wait until he was 19,before being told,it was NOT Benign,but the cause of all his difficulties. Should have seen that he was having absences for years,before realising that he was not Off With The Fairies,but having absences. Epilepsy kicked in at 20-what a shock! Glad he had access to SALT,PT and OT from 3 years old.
I'm really glad we sent Cassie to public school! The best decision ever!! (re: special-ed or mainstream) it's both. She is mainstreamed through out the day but works with SPED all day long.
Joanna was in a special education program from 7th grade on at the high school. Small town--little choice. She did not learn too much there but loved school.
I wish we would have not started toilet training at three and had waited longer. I wish I had spent less time an academics during the younger years. I'm glad I found some activities that Robbie and I both enjoy, ABA and music therapy were helpful. I'm glad Robbie had on opportunity to attend a special needs school when our district couldn't handle his behaviors at puberty. I'm glad we spent the last few years working on a transition program from high school.
I have been thinking of how to answer this question since yesterday, hoping that whatever I say will be helpful...so here goes. Rosanna is 32. She was not diagnosed with Dup15 until she was 25. Until that time, we dealt with developmental delays, "mental retardation" (their words, not mine), autism and attention deficits. She went to public school, repeated kindergarten, was in special ed from the 1st grade through high school, was mainstreamed for some classes, and attended a skills program after high school graduation for two years. The school experience was a mixed bag and Rosanna was left with a lot of unpleasant memories, Her father and I went through a separation and divorce during her school years and I think that did not help her emotionally at all. She has issues with math, money, and telling time (she can read a digital clock and knows what time it is, but cannot grasp the concept of a face clock or hours, minutes, etc.) Forget Roman numerals!!! She does read, although during a parent/teacher conference, a careless teacher told me she would never read and she overheard that and was very angry! She is fairly high functioning as far as hygiene and likes to do her own laundry. Her room is often messy and we negotiate that chore often, but she is open to negotiation. I think she could have been an attorney in a different life, she is quite formidable! Seizures started at age 13 at onset of menstruation. Before that, if she had seizures or absences, we didn't realize it.
MEDICAL ISSUES AND DIET, ETC:
I didn't even know Samuel had the Dup until over a year after the seizures started at 17, so he was 18 before the Dup was even known. His HFA was his "definition", basically. Dealing with autism/delays was our main concern, and he was high functioning, so it wasn't a huge concern, he was on a good path. Now that the seizures have taken center stage, I wish I had been better prepared for them, knowing that they could wreak havoc if not caught early. Diet has played a major part is giving him back a better life. I wish I had concentrated more on "preventative diet". I think they will find that this plays a major role in all aspects. Specifically, gluten free, some dairy free, some soy free, LGID, ketogenic, and MAD diets.
SOCIALIZATION AND SOCIAL LIFE:
I'm glad I had a bunch of other kids for him to identify with, mimic, learn from, protect him, and will hopefully take him in after I'm gone xo
Not sure if this helps, but for Stephen I distinguished between 'ladies' and 'friends'. Bear with me ... 'Ladies' were therapists/doctors-people he had to participate with, 'friends' are people he must be polite to (hi/goodbye/thank you) but does not need to stay on task with.....I have done that from 6 weeks old when the 'lady' came for therapy (pt/OT/speech) all the way thru. It helped with the bag of tricks. Participation was mandatory....still is! Yet he got praise and usually a sticker or hand stamp for participating. I'm glad Stephen is treated as just one of the kids....I have great kids who expect Stephen to behave appropriately, yet give him space when he needs it.
Plan breaks in social settings. Teach him to ask for a break.
Timothy attends preschool in the mornings on weekdays. He is receiving therapy there as well and loves school in general. The situations he struggles with are large crowds, going out to eat, etc. Most of the time it's with family (grandparents, aunts and uncles, etc). My kids are the youngest in the family and the rest are 8 and older. None of the family gatherings are set up to accommodate children this young. They're usually large gatherings and Timothy doesn't have the vocabulary to let others know that he needs space. I want him to be treated like just one of the kids as well. That's how how he's treated at school (with extra attention) but family just doesn't get it. Hope that makes sense...
One thing that i really stress with Kevin who is 9, is politeness he isn't allowed to demand things... I do this because it will be hard enough dealing with his behaviors when he is a teen but my hopes are that these behaviors will be easier on his helpers if he is polite. There has already been some positive feedback... Oh also teaching him to be a good sport. How? Modeling when he asks for something i'd hold it in my hand and repeat " may i please have a cookie" then i would put it in his hand but not let go until he would say thank you. He also gets extra "stars" from his service providers if he is polite... He probably won’t understand empathy but if he is rude or demanding ill explain to him how that makes someone feel. All his providers including at school know that this is extremely important to me so they help
Use visual cues to teach politeness and manners. This is one of those abstract concepts that we need to make CONCRETE so our children understand them.
Socially, she misses so many cues and it would be hard and honestly, dangerous for her to live on her own. She loves people, but doesn't have many friends. Not because she can't be a friend, but because it is hard to find young people her age to socialize with. She thinks she would like a boyfriend, and to be married, and have children, so we often talk about the reality of that. That is hard for her, harder for me, but she is so optimistic. She is a loving young lady, with an emotional range of 7 to 14 years old. She volunteers at a daycare at a local community college, can take the handicapped van around town, if she wants. She is thinking of volunteering at the Humane Society. She would love to have a service dog and has a notebook on the subject, but has gotten discouraged because she does realize it is expensive.
HOW OUR KIDS LEARN BEST:
He learns more from observation, at his own pace, than being forced through teaching, when it comes to social skills. He's learned more from you-tube about Autism since he's been out of school than he ever got taught in high school....he asks me non- stop questions about it....
Giselle also learns more by watching other people. I don't stress over the small stuff but would go to hell and back to fight for what she needs. For someone who needs routine and 'sameness' she is so unpredictable with her responses. My 'Mary Poppins' bag of tricks always comes in useful. Lots of distraction techniques work well most of the time. Colourful.....yes that the word. Our life with Giselle is colourful!!!
Turns out in some ways it's a lot like how other kids do:
I've been working with our local YMCA to start some classes there for kids with special needs. We started the first one this month, a special-needs dance class - although I think of it more as a dance party. It's deliberately very unstructured: I play music, provide colorful scarves for the kids to play with, and we let them go. So far, all the kids seem to be having a great time. Some move by themselves to the music, some run around the room chasing each other, some find other ways to play with each other. A few moms have reported that their kids sleep REALLY well after the class.
Today there were only three kids there. A few, including my daughter, had colds so stayed home. The three who were there ran around with each other, tried out dance steps and played games that they made up.
I was talking with one of the moms. She told me that her little boy - let's call him Sam - was very very persistent about learning to do things he wanted to do, like walking, running, and most recently jumping up and down. But there were some things he just wasn't interested in. Stacking blocks was one. At school, when the teachers worked with him to stack blocks, he would tolerate it but made it clear that he really didn't like it, she told me.
A little while later, we watched as he enthusiastically helped a little girl to stack the pile of yoga blocks she had found on a shelf in the room, into a big tower.
The scene just reinforced for me what I've been thinking about my daughter's therapies and education. She's currently in a special-ed preschool, but is scheduled to move on to kindergarten next year. I'm keeping an open mind, and I'm going to go visit the school in question but I don't think I'm going to send her. I've written elsewhere about some of the problems I see with traditional education. Much of this hasn't been an issue for her yet because of her level of development. So far, being in school has only helped her. When she first started, we noticed a tremendous burst in awareness, alertness and interaction with others. I think some of it was just because she was being stimulated by a new environment and new challenges, but I also think a lot of it was being around other kids her size.
Over the past year though, she has started to be a lot more independent - or, to want to be more independent. She doesn't like having to do what her therapists want her to do, or to sit in a chair in school when she doesn't want to - she doesn't like all of the things that I would never subject her typical brother, or any typical child, to. But she's different, she needs extra help. So what do I do?
The answer is that I'm not entirely sure. I'm not going to abandon her therapies altogether, and I am going to make sure she's in an environment with other kids and with some kind of routine and structure. But I'm pretty sure that the standard "special-ed" track is not what I want for her. I want her to learn to interact in the world and with people, not to do math problems on a piece of paper, or "follow instructions." I'm also pretty sure that she is going to learn as much, if not more, from her peers as she will from any teachers or therapists - just like most kids do.
So for now, we're working with some professionals to design a mode of therapy around her specific needs. And I'm going to be setting up more special-needs classes at the YMCA. I'm also making plans for a special-needs playgroup to meet at our home. The idea will be similar to the dance class at the Y: Very little structure, just lots of tools and an environment where the kids can work and play with each other and learn from each other. I'll be posting more about all of this in the coming weeks.
Our daughter suffers from seizures, and we are considering trying cannabinoids to get them under control. We are currently trying the ketogenic diet, and hope that works. But if it doesn't, medical MJ is our next step. So today I called to get an appointment with a doctor who can prescribe it for us, so we'll have the prescription if and when we need it.
It was a weird process. Our own doctor cannot prescribe cannabinoids. Apparently it's a whole "thing" and not every doctor wants to be in the position of prescribing medical marijuana. I can understand why. So we had to find a doctor who could prescribe it for us. Our own doctor didn't know of anyone, but had a patient who was trying it and after getting permission, gave us her number to call.
I spoke with the mom, who has been using a cannabinoid oil with her severely disabled son for a few months now. This family is not using Charlotte's Web, but they are on a waiting list to get some ("talk to Ray, at Realmofcaring.com", she advised me.) I asked her what strain she was using, and she said that there was no name for it, but that it was high in CBD, which is thought to be good for seizure control. Dosage guidelines haven't really been determined, so they are just "winging it."
She told me that they saw some decrease in seizures, as well as a faster recovery from seizures when they do happen, but just as important, they've seen a dramatic improvement in his mood. He is now doing things he hadn't done in a long time, if at all: Laughing, smiling, making more eye contact, making an effort to get up. She told me that her son used to grind his teeth a lot, and that that has stopped. He is happier, she says.
It's good to hear this kind of report. There are clinical trials of cannabinoids going on now, but for now what we have to go on is mostly anecdotal, and mostly positive. I hope the diet works and we never even have to try it. But if we do, we'll have the proper ridiculous piece of paper giving us permission to do so.
Oh, and in case I haven't made it clear elsewhere: F*** the war on drugs and F*** the state.
This is disgusting. Please sign her petition. Says mother Jenn McNary:
It is taking too long…
I was a mother of two dying children, Max and Austin. Now I am a mother of a dying child, Austin. Both of my boys have Duchenne Muscular Dystrophy but Max has been receiving Eteplirsen for the past 2.5 years and continues to get stronger each day. Your past support has been immeasurable and I am so thankful for it. There is no denying that your support has made a tremendous impact. However as a mother of a dying child – there is no such thing as steps forward or progress. I can only measure success in one way. Austin getting Eteplirsen. Every day that passes – every day that he gets weaker – every time I see him struggle to feed himself - I know that I have failed him. It is simply taking too long. From experience, I can tell you it is exponentially worse to be a mother of a dying child that you know you can save than being the mother of two dying children. This is torture.
I want the needless torture to end. I want the laws that we have created to be implemented. I want the White House to hear this story so that no one has to watch a loved one die when there is a viable treatment available. Simply, I do not want anyone to have to go through this again. Please support me – support Austin – support every child with DMD – support access to life saving treatments for our loved ones for any disease. Let’s not fail them anymore.
The Obama Administration has promised an official response if we’re able to get 100,000 signatures by March 29, and we're already a third of the way there. Click here to log-on to the White House petition site
and sign the petition.
I want to be the mother of no dying children.
Thank you so much for your support.
Jenn McNary/ Austin’s Mom
(And no, the petition is not about abolishing the FDA - although it should be - but it might help this family.)
I know this doesn't look like much, but it took me several days (complete with their usual interruptions - see Harrison Bergeron for details) to accomplish. I'll post the "after" pictures first:
So here's what it looked like before:
Of course there's other stuff you can't see in the photos, but these pretty much show the difference between my daughter's organized but overly full space and her new, uncluttered one. It may not seem like much of a difference but the effect is actually huge. The whole room feels different to me now and I'm sure it does to her too. There is a chance now that she will be able to see and understand where things go, but more importantly she is not going to be overwhelmed by the visual stimulus in her environment.
A little over a year ago - in December of 2012 - I found these little guys out in our back yard. They are monarch caterpillars and they were crawling around on what I later learned were milkweed plants - the only thing monarchs eat. I thought we'd watch them make their cocoons and later emerge as butterflies, but then I noticed that the next time I looked, there weren't so many of them. Somebody was snatching them up. So I grabbed all that I could find and stuck them inside my son's butterfly house. Sure enough, they made their cocoons and eventually emerged as beautiful butterflies which we released into our back yard. The challenge though was finding enough milkweed leaves for the caterpillars to eat. They quickly finished what we had in our backyard and I ran around to garden stores looking for more, finally ordering some online. I now have five well-established milkweed plants in our yard but as of mid-February 2014, I haven't seen any signs of caterpillars.
Apparently, monarch populations are in trouble. According to the New York Times:
Faltering under extreme weather and vanishing habitats, the yearly winter migration of monarch butterflies to a handful of forested Mexican mountains dwindled precipitously in December, continuing what scientists said was an increasingly alarming decline.
The migrating population has become so small — perhaps 35 million, experts guess — that the prospects of its rebounding to levels seen even five years ago are diminishing. At worst, scientists said, a migration widely called one of the world’s great natural spectacles is in danger of effectively vanishing.
Mexico is the southern terminus of an age-old journey in which monarchs shuttle back and forth between far-flung summertime havens in Canada and the United States and a single winter home in Mexico’s Sierra Madre mountains.
The latest drop is best explained by a two-year stretch of bad weather, said Chip Taylor, a biologist at the University of Kansas who has studied the butterflies for decades. But while good weather may help the monarchs rebuild their numbers, their long-term problem — the steady shrinking of habitat along their migratory route — poses a far greater danger.
Monarchs lay their eggs only on milkweed, and patches of the plant have rapidly disappeared from the Great Plains over the last decade. As corn prices have risen — spurred in part by a government mandate to add ethanol to gasoline — farmers have planted tens of millions of acres of idle land along the monarchs’ path that once provided both milkweed and nectar.
At the same time, growers have switched en masse to crops that are genetically engineered to tolerate herbicides. The increased use of herbicides has all but wiped out milkweed that once sprouted between rows of corn and soybean.
As a result, Dr. Taylor said, the monarchs must travel farther and use more energy to find places to lay their eggs. With their body fat depleted, the butterflies lay fewer eggs, or die before they have a chance to reproduce.
So... score another victory for the fiasco that is government-sponsored ethanol. But what about my caterpillars? Am I not seeing them this year because they have fallen victim to depleted habitats? I can't be sure. But rather than wait around to see if they show up, I'm going to take action. I've just ordered one of these, which will hold substantially more butterflies than our existing little butterfly garden. And I'm going to order some more milkweed plants too.
I've also learned that I can order monarch eggs, caterpillars and chrysalises! There are a few farms around the country that do this. For states on the eastern side of the continental divide (because apparently the two strains of butterfly do not mix), there is Shady Oak Farm, a butterfly farm in Florida that is "...dedicated to helping others experience the joy of raising and caring for butterflies." Shady oak sells butterflies at all life-cycle stages, including big accordion boxes of mature butterflies for release (a great, if somewhat expensive, idea for a party, wedding or fun event.) Shady Oak also sells milkweed plants, and butterfly kits.
On the western side of the country, there is Swallowtail Farms, in El Dorado Hills, California, and Chasen Butterflies in Mission Viejo, California. Swallowtail's website has a great FAQ that addresses many of the concerns about releasing captive-bred butterflies into wild populations. They have also helped to build the largest monarch butterfly farm on the west coast, and developed the first commercially used disease treatment for monarch butterflies. All of the butterflies they ship are certified disease-free. Unfortunately, Swallwtail does not sell monarch caterpillars or chrysalises. Chasen does sell monarch chrysalises, but are currently out of stock. So... my search continues. I'll update here as I learn more.
UPDATE: One site to check is this one, listing local butterfly breeders around the world. You can search by country and by state (in the US). It looks like this might be the best place to find a butterfly farm that can ship to wherever you are.
ANOTHER UPDATE: The Latin name for Milkweed is "Asclepias." The name comes from the ancient Greek god of medicine and healing, Asclepius (also Aesclepius or Aesculapius.) He is one of my favorite characters from Greek mythology, because he was punished (killed actually) by Zeus because he was so successful as a healer that Hades became worried that he would receive no more dead and asked his brother Zeus to take care of him. I think his story has many a parallel in the world of medicine today. It is from Asclepius that we get the serpent-entwined staff symbol of medicine, the caduceus.
First, let me just say that traveling with small children is a massive pain in the ass. Traveling when one of those children has just started the Ketogenic Diet, even more so. I love my small children more than anything in the world. I would die for them. But I would be a big fat liar if I said that getting on an airplane with them and all their stuff was anything but a massive pain in the ass. There. I've said it.
We had two reasons for going: First, to mingle the ashes of my husband's grandmother (who passed away in October) with those of his grandfather, and then find a beautiful place to scatter them. Second, for our son to play in snow - something he did when he was about a year old but has no memory of. I'll end the suspense: We accomplished neither of these goals. The tremendous mounds of snow that had enveloped the city only a week earlier had been washed away by freezing rain by the time we got there, and our attempts to scatter the ashes ended in a pathetic little scene in what had quickly become arctic winds and more of that freezing rain, with my husband and his brother struggling heroically but in vain to figure out how to open the containers that held the ashes.
Of course Portland is beautiful and full of hipsters and yummy food, and we got to spend some time with Guy's mom and stepdad which is always fun - partly because there's always some fascinating detail that has been left out from our incomplete knowledge of their various histories. This time it was about how his stepfather had snuck out of the refugee camp in England to go to some kind of underground club for Checkoslovokian refugees in London. He was caught, but because the officer from Scotland Yard was so impressed with his initiative, he didn't face any charges.
What made the whole trip more than worthwhile though was getting to spend some time with Corrina. Corrina is a teenaged girl who has the same chromosomal duplication that our daughter has - Dup15Q (or, in their particular case, IDIC15). When you have a child with developmental disabilities, you do a lot of thinking about what you want for them, what basic skills you most want them to have, what their goals in their therapies should be. For us, because language is our daughter's greatest deficit and because it is so critical for getting around in the world, our goals have mainly been focused on developing her ability to speak and communicate.
Corrina doesn't have any spoken words. She probably never will. She still needs some help eating and doing some of the other things we would like our daughter to be able to do when she is older. But none of that describes what it is like to be around her. She is one of the most vivacious, happy, and social people I have ever met. She has a smile that seems like it's going to burst out of her and take everyone else with it. She is excited - no, thrilled - to spend time with her friends from school, and when she's at home she looks at photo books with pictures of them. While we were at her house, she called me over to her with hand gestures, and with great excitement and putting her hand on my shoulder, showed me a picture of an elephant in one of her photo books. She is more socially engaged than I ever was as a teenager.
Corrina does communicate. Through pictures, iPad apps and a card with the alphabet on it that she uses to spell out words, she is able to tell the people around her what she wants, needs, observes and cares about. But what I realize being around her is that she has some of the most important things a person can have: People around her who love her; an active social life with friends she loves; the social skills and confidence to interact with the people around her; and ways to contribute to the people in her life. (Earlier, her mom had posted that one of Corrina's fellow students has been inspired by Corrina to pursue a career in working with people with special needs.) Probably, this is old news and very obvious to people who have been special-needs parents longer than I have, but it is a revelation to me: Corrina has in her life things that a great many "typical" people - people with no serious disabilities - never have.
So I came away from our visit with a new perspective on my own daughter's therapies and education. I'm not sure what it will mean in practice - it may not change the nature of the goals we put down when we meet with her teachers and therapists, or it may - but my focus has changed. Yes, I still want my daughter to learn to speak, if she can. But it's not the most important goal. My most important goal for her - and it always has been, but somehow now it seems more tangible - is that she lead a full and happy life, that she is able to pursue her own passions - however simple or complex they may be - and that she is surrounded by people who love her and who she enjoys. I want her to have what Corrina has.
Writes Betsi Fores at Rare:
State Rep. Carly Melin has led the charge in her state to legalize medical marijuana, but has found resistance and stonewalling when it comes to the state’s law enforcement
“It’s like negotiating with a brick wall. All along I have said that I am willing to amend the bill. But they won’t move at all,” said Melin, reports Politicsinminnesota.com.
So why such staunch opposition?
Drug enforcement stands to lose a lot of funding should marijuana become legal. Federal funding through the Department of Justice gives police task forces money specifically aimed to target drug crimes from a fund called the Edward Byrne Memorial Justice Assistance Grant. The grant doles out $300 million to $500 million annually to police stations around the country.
In recent years, police have done a better job securing money than fighting crime, argues Norm Stamper, a former Seattle chief of police turned drug reform advocate who now serves on the board of Law Enforcement Against Prohibition.
“The agencies that are successful have to demonstrate a commitment to drug enforcement. The nature of that enforcement is much less important,” Stamper told PoliticsinMinnesota.com.
“Those who develop a dependency on federal funds such as Byrne grants are likely going to oppose any kind of initiative to legalize anything that’s been a cash cow for them.”
Not only are police forces benefiting from federal grant money, but in 2012, Minnesota police seized an estimated $8.3 million worth of assets under the state’s forfeiture law. 47 percent of those forfeitures were drug related; most of the others were from drunk driving.
Items like helicopters that are seized from drug dealers can be turned into police department assets.
Read the rest here.
See here for more about Law Enforcement Against Prohibition.
Personally, I wouldn't be surprised if the people who oppose this are afraid it will lead to a rash of literate spiders. Laurence says it perfectly:
Not the book, but the drug. Florida may legalize a marijuana extract known as “Charlotte’s Web” because it can dramatically reduce seizures in children with a rare form of epilepsy. However, “some Republican lawmakers are concerned that support for Charlotte’s Web could be confused with support for a medical marijuana proposal on the ballot in November.” This is because “some Republicans” in the Florida legislature are enemies of freedom. Because it has such a small amount of THC, users of Charlotte’s Web don’t get high. Well, what if users do get high? What business is that of the state of Florida? Why is it that in Florida you can buy a bottle of booze and sit at home alone and drink the whole thing and get totally wasted out of your mind and no cop or politician cares a whit, but if you buy a joint and sit at home alone and smoke it they want you to lock you up in a cage? Cursed be the drug war and cursed be those who fund it in the legislature and enforce it on the streets.
I don't think I'm being picky when I say "redefine" isn't really what they're doing here. They're not redefining beauty, they are recognizing the beauty that is already in them. They are stopping for a moment in time to really see themselves, and to allow others to see them, without pretending to be someone else or trying to look like someone else, and they are seeing the beauty that's really there - not the "beauty" that is a result of trying to look like someone you're not. But I guess if a person's definition of beauty is "looking like someone else who is beautiful", then maybe this is redefining that for them. Personally, I think that if you look long enough and closely enough at anyone, you will see their beauty.
This looks like a project worth supporting: A retelling of the story of St. Francis and the wolf - in which peace overcomes violence.
Mark Van Steenwyk, a pacifist dad, came up with this idea for his five-year-old son who only likes stories with violence in them. He is faced with the same challenge that I am in writing Urban Yogini: How to create compelling stories without resorting to violence. The video is worth watching if only to hear the comments of Mark's son:
Here's Morgan's dad and founder of Morgan's Wonderland, Gordon Hartman, talking about how he got the park started. It's fascinating, not just from a parent's perspective, but from the perspective of a person (me) looking to start a similar enterprise that serves families with special needs. But it is also worthwhile just from the perspective of anyone looking to start (or improve) any business, to see how eloquently he describes the process of stepping into the shoes of the people he intends to serve.
Also: "We don't have a marketing budget. It's all done by word of mouth."
...and while I'm on the topic of cool and beautiful things that help me procrastinate, I've just discovered that Adele Enerson - the mom from Helsinki who made these wonderful pictures of her baby daughter during her naps - has now produced a book of her sleeping baby images. Also a calendar, which I've just ordered. (HT: David Kramer for introducing me to Mila's Daydreams.)
I'll post more about this later, but just wanted to get this video up. This is Stormy Chamberlain, of UCHC's Department of Genetics and Developmental Biology, giving a talk about the "induced pluripotent stem cell" research she is doing on the genetic condition that our daughter has (Dup15q). Induced pluripotent stem cells are cells that start out as normal cells (not stem cells) and are - somehow through the magic of science - turned into a kind of "artificial" stem cell. Stormy has been using these "artificial" stem cells to conduct her research.
But we had some actual Dup15q stem cells - from our daughter's cord blood that we had collected and stored at her birth. So after detailed discussions with the cord blood bank to confirm that we could donate a portion of the stored blood and still retain a portion in case we would want to use it for actual stem-cell therapy (unlikely, but the reason we were storing it in the first place), we decided to donate some of our daughter's cord blood - which could potentially be more useful than the induced pluripotent stem cells - to Stormy's research.
I don't think I would ever have foreseen this as a reason to bank our daughter's cord blood. In fact, when we initially learned of her condition, my husband asked some of the specialists we met with whether developments in genetic medicine might be able to help her. Their response was that, at this point in time, that kind of thing was "science fiction." Well, it turns out that that's not necessarily true. There are some very exciting developments in this area that might actually be able to change things for our daughter and for other children with her syndrome (and similar syndromes.) Stormy's research is part of that so we are thrilled to have been able to help out with it.
Here's Stormy talking about her research, at the Dup15q Alliance's Scientific Conference in August: