The BBC Horizon documentary The ghost in your genes, successfully explains a particularly complex field of science. Genetic inheritance has historically been thought of as involving the transmission of DNA from one generation to the next affected by occasional mutations in the DNA itself (00:04:37 - 00:05:50). "Up to now, inheritance is just the genes, the DNA sequence. I suspect that we're going to be able to demonstrate that inheritance is more than that", explains Professor Marcus Pembrey from the Institute of Child Health, UCL. A few scientists had hypothesised that the conventional genetic model and mode of inheritance was too simplistic to explain the complexity of human beings. The revelation that the human genome likely contains only about 30,000 genes (00:08:54 - 00:11:33), coupled with increasing experimental evidence, now leads scientists to believe that other factors allow genes to be switched on and off in response to environmental stimuli. The consequences of which may affect subsequent generations.

In the early 1980s, Professor Pembrey was Head of the Clinical Genetics Department at Great Ormond Street Hospital, London (00:05:50 - 00:08:58 and 00:11:33 -00:16:47). He was often presented with families exhibiting unconventional genetic inheritance patterns. This drew his attention to two genetic diseases;

• Angelman syndrome, which displays clinical symptoms of jerky movements, little or no speech and a very happy personality
• Prader-Willi syndrome, patients are found to be very floppy in infancy and develop an insatiable appetite associated with obesity in later life

He worked out that these two completely different diseases were caused by the same genetic alteration, a small deletion on chromosome 15. What was even more remarkable was that the parent from whom the mutation was inherited determined which disease was observed in the patient. If it was inherited from the mother then the child would have Angelman syndrome; from the father then the child would have Prader-Willi syndrome.  This phenomenon suggested that the chromosome somehow 'knew' its origin and therefore must be tagged or imprinted in some way - this has become known as ‘genomic imprinting'. During sperm or egg production, a chemical change results in the same DNA sequence on each chromosome having different functional properties. These events can lead to a particular gene being turned on or off, and this is the central principle underlying ‘epigenetics'.

Professor Wolf Reik, Developmental Geneticist, Babraham Institute Cambridge (00:16:46 - 00:24:05), helped unravel the control process. He noticed that when a mouse embryo was placed in a culture dish some of genes would be switched off and wondered whether this could also be true for human embryos during In vitro fertilisation (IVF).

Beckwith-Wiedeman syndrome (BWS), which is typically characterised by the excessive growth caused by reduced expression of a growth-suppressing gene and increased expression of a growth-promoting gene, is another epigenetic disease. These genes, which are found on chromosome 11, usually work in tandem to ensure correct and proportional growth. In the disease state, epigenetic changes cause this to become unbalanced, leading to excessive growth of the patient.

Professor Reik discovered that BWS occurs more frequently in IVF-conceived children than with natural births. This evidence suggests that placing a human embryo in a culture dish and thus changing its environment, could induce an epigenetic alteration, causing genes to be turned on and off. Professor Reik also showed that the epigenetic changes observed in mice could be inherited from one generation to another.

To establish whether an environmental stimuli could imprint inheritable change on DNA in humans, the documentary examines the work of Professor Rachel Yehuda, Mount Sinai School of Medicine, New York and Professor Jonathan Seckl, Edinburgh University (00:28:19 - 00:35:46). Both were interested in ‘transgenerational effects', in which an event could happen in one generation and be transmitted non-genetically to the next generation. Professor Seckl's work on pregnant rats had shown that exposure to stress hormones caused raised anxiety in their offspring, and in generations thereafter.

Their work examined the impact the September 11^th 2001 terrorist attacks in New York had on pregnant women. The human ‘stress hormone' cortisol, is involved in the human response to stress. Low levels detected in the saliva are associated with difficulties coping with stressful events which may induce a Post Traumatic Stress Disorder (PTSD). Pregnant women in the last third of their pregnancy at the time of the attacks on the Twin Towers and who suffered with PTSD not only had low levels of cortisol but also their children were born with lower than normal levels of cortisol in their saliva as well. This indicated that events during the last third of a woman's pregnancy could change their children's ability to cope with stress. To confirm that this was an epigenetic change, both scientists admit that they will need to examine the cortisol levels in the next generation, to see whether this change has in fact been inherited and is not just a consequence of high levels of cortisol in the mother's womb.

In search of further evidence of the epigenetic phenomenon, Professor Pembrey teamed up with Swedish Professor Lars Olov Bygen, The University of Umea (00:23:46 - 00:28:19 and 00:35:16 - 00:43:18). Their work focussed on the remote Sweden town of Overkalix. The town has an extensive archive of population records, including all births and deaths of people who have lived there and, crucially, harvest information going back hundreds of years.

At first they found that life expectancy of grandchildren was directly affected by the diet of the grandparents. Fatal childhood diabetes was often associated with their father's father living during a period of reduced food supply. In a further development, the records revealed that triggering of a trans-generational effect was dependent upon the time in the grandparents' lives when food had been in short supply. For the grandfather it was just before puberty and for the grandmother it was the moment of conception, crucial moments in the development of sperm and egg. These observations suggest that environmental information, in this case supply of food, was being imprinted on the DNA of the sperm and egg, providing strong evidence that epigenetic inheritance occurs in humans.  

In further work, Mike Skinner (00:43: 18 - 00:45:51) exposed a pregnant rat to a high dose of a common pesticide. He found that the offspring passed on an array of diseases, such as; tumours, kidney disease and immune dysfunction from generation to generation. This evidence suggests that there are a whole series of environment events that might possibly trigger transgenerational affects and effect future generations.  

Ethics of epigenetics

The understanding of mechanisms by which environmental events can induce transgenerational effects is significant. The gender of the parent passing on a mutation, use of IVF, mental trauma, food supply and pesticide use have all been implicated as epigenetic triggers. It is highly likely that other lifestyle factors may leave people susceptible to epigenetic changes, with alcohol consumption, drug taking, smoking, exercise, stress at work and atmospheric toxins amongst the most probable candidates.  As such, this raises many ethical issues for discussion;

• Epigenetics may demonstrate that people have a choice concerning the influences to which they 'expose' their genome. Should there be obligations concerning the lifestyle decisions of the current generation for the sake of future progeny?
• Will individuals be legally culpable for future illness in their offspring if an established link is ignored?
• Will epigenetics lead to multigenerational liability for mortgages, employment or insurance? Will environmental events in previous generations lead to higher premiums for the current generation?
• Should women be prevented from working in the later stages of pregnancy to preserve future generations?
• Would epigenetics lead to issues of discrimination?
• Is the information contained within the human genome more or less sensitive now that scientists recognise epigenetic influences? How and who does this information effect?  Should it be protected by privacy legislation?
• What effects could epigenetics have on compensation payments? Environmental justice - workers, home owners, car driver are exposed to different substances. What health effects will this have on future generations?
• Epigenetics will highlight social inequalities - those that could be affected most are those who have the least hospitable home and work environments and least access to full and proper health care.

‘The ghost in your genes' is an excellent resource to help explain the basis of genomic imprinting and epigenetics. Despite never directly discussing the ethical issues surrounding the topic, it does make many references regards to the possible implications epigenetics may have for future generations. It also acts as a very thought provoking documentary regards the rights and wrongs of the research and the consequences such findings may have.

This Horizon episode was first broadcast on 3^rd November 2005, BBC 2, 21:00pm, 50 minute (TRILT Identifier 005536A3) and was repeated 10^th November 2005, BBC1, 02:05am.

Today, the kids were playing in some mud puddles ( I wrote more about it here ) and Maddie wasn't all that interested.

At the end of the day, she was the driest kid I had.  I guess she is growing up.  I guess mud puddles aren't that exciting to ten year olds.  I'm glad she's maturing, that this is some "typical" part of development for kids her age.  But I'm sad that part of her childhood is now behind her.  She found joy in the simplest things.  I hope and pray she never outgrows that.

But I've yet to mention Maddie and Angelman Syndrome.  I have a lot of guilt about this.  Its been 21 days of blogging over there, yet I haven't made mention of Angelman Syndrome.  What's the matter with me?  AS is a huge part of my life.

I haven't formally introduced any of my kids.  I've mentioned them of course, but didn't say anything specific.  Partly because of Maddie.  I don't want to be pitied.

Seriously, what is the matter with me?  Am I embarrassed to have a child with a disability?  Does it take away from me as a mom?  Does it take away from my ability to parent "normally"?  Does it make people think less of my family?  Don't I know how to just say it by now?

Every day I put off writing about Maddie, I feel like I'm making it worse.  Ugh.  I totally suck.  : (

But Maddie has a big problem going over there.  She has conditioned herself to puke at the possibility of going in.  She doesn't even make it into the house anymore.  Just go ahead and puke on the sidewalk and get it over with.  Don't pretend that we're even getting in the door.

This REALLY REALLY sucks because its hard to be a good friend to someone when you can't concentrate on the conversation because you have to keep yelling out the door for Maddie to sit on the porch.  I'm sure its insulting too, "Your house literally makes me sick."

: (

Ugh.

We took a group trip one evening to the Raging Rivers Waterpark in Grafton, Illinois.   Anyways, I thought for sure it would be flooded right now, but it looks like it might have just missed the waterpark (the road to the park is flooded, but the actual park is still operational).

Random memories of the waterpark:  It was so pretty, right next to the Mississippi River.  You could watch the barges while you swam.  It was nice seeing everyone out of the hotel setting.  I got to just sit with Tammy (conference chairperson- what a huge task) and watch Audrey swim.  The kids (of course) all had a great time in the water.  There was a family from California sitting near us on the bus ride, and the daughter just stared out the window "Everything is *so* green!"  There was a giant cyclone ride that swirls the rider down into a tunnel and then drops them in a deep pool (Cassie nicknamed it "The Toliet").  There was a downpour!  I know we were in swimsuits and wet already, but it was a hard and cold rain, and we all squeezed in under the food service tent.  I got to watch Camille for a few minutes!

This is great for raising awareness of Angelman Syndrome and demystifying disability.

It would be a great article for families new to the diagnosis of Angelman Syndrome.

Good work!

Being one with nature, being away from home and commitments, being together as a family . . . it’s all great. The greatest. The best. Could not ask for more.

But one manifestation of Maddie’s Angelman Syndrome is that she gags and pukes. Often.

She pukes at smells (say for example, if a gallon of milk would happen to fall out of the camper fridge and break on the drive up and slosh into the registers, then sit in the unreachable crevices in the summer heat. . . it’s quite a noxious smell).

She pukes at disgusting-ness (take four boys, and all the boogers, snot, pee, and spit that they are either talking about or excreting, and it’s pretty much constant disgusting-ness).

Don’t get me wrong, I’m *so* used to puke. I couldn’t be more used to it. I catch puke in my bare hands. I catch puke in my own shirt so we don’t disturb where we are at. I’ve been cleaning up puke for about 10 years. From the constant projectile vomiting as an infant, to the every-mealtime puking of toddler-hood, to the every-mealtime puking because she finds her younger siblings to be messy eaters, to the lull of once every other week of a few years ago.

Puke is basically my life.

(Ok, that was a total exaggeration, but it sounded good.)

But damn is it depressing at times. Like the sixth time it happens in two days. And I step in it. Is it too much to ask that I don’t step in it? Really. That sucks.

So technically it’s not the camping that I hate, but the stepping in puke while camping. But right at this moment, my foot is still wet, and it’s hard to separate the two though.
So, when is our next trip scheduled for?
(major eye rolls)

Not in schools and not by the adult service providers and not by DD councils and not by mental health services. Who does it and does it well?

The answer: families. Families live it 24-7 and they have to adapt and be creative.

At the campground, my kids were sitting by the campfire. Cassidy suggested telling ghost stories, but who would go first?

In her sing-songy voice, she said “We all know who the oldest is…”

Maddie responded with a “Me, me, me!”

“Alright, so let’s tell a story” (Cassidy will be an excellent teacher some day, either to a classroom full of children or training CEOs)

And Maddie, oh so appropriately, said a spooky: “ooooooooooooh ooooooooooh.”

It wasn’t complex, it wasn’t extra work, it just took a little thought, and the belief in her heart that EVERYONE could participate.

Why can’t we all see that? Everyone belongs. Not because some law or court decision says you have to but you do it because it’s just the right thing to do.

disability

multiple disabilities

Angelman Syndrome

It hurts to have the "Angelman Syndrome" circle split even smaller.  Maddie is often called "high functioning." 

What does that mean?  I think that for most, it means she is doing better than expected per the prognosis, or that per a random pool of kids with AS, Maddie would be, skill-wise, near the top. 

It should be a good thing I guess, but if you're high, than someone else must be low.  And that's not fair.  Everyone loves to compare and contrast, and I understand that.  Each individual has many strengths and deficits. 

But to me, part of it is that "high functioning"  negates all the accomplishments and work behind them by saying "oh, she's high functioning."  Maddie has put in A LOT of work to get where she is.  So have I.  So have her siblings and friends and support staff.  She's not just doing great all by herself.  Its been work to get here and it continues to be work to maintain.  Don't dismiss it by waving it off as "high functioning".

And that doesn't mean that if your child is considered low that you are not working at it.  Not at all.

We found early on some ABA-ish training that has worked extremely well for us so far.  Its taught Maddie AND ME the basic foundation for mental focus and attention, physically calm and prepared, repetition and assessment. 

http://mcdj.wordpress.com/2007/12/31/what-worked-for-us/  (my thoughts on floortime and ABA as done by an untrained parent).
 

Best wishes to everyone.  Label yourself loving and loved.  If you have that, the rest don't really matter.

Maddie's coach is awesome.  She said if all Maddie wants to do is sit on the bench, that's fine with her. 

So Maddie will go to all of the Tuesday games to cheer on the girls on her team.  She will do the lap around the field before the game begins and the high fives with the other team when the game is over.

I'm so happy that this has worked itself out.  The coaches and girls couldnt be more welcoming and willing to adapt.  : ) 

http://mcdj.wordpress.com/2008/05/26/play-ball-2/

http://mcdj.wordpress.com/2008/05/17/play-ball-1/

And Doug will explain how to build it... Take it away Doug!

(note: read this next part in a manly voice!)

"Uh, I'm too busy to write right now.  My directions will be another post."

OK!  Thanks dear.  : P 

It would have been very easy to let my life and focus be just DisabilityDisabilityDisability.  When Cassie was born, it gave me a reference point to what kids Maddie's age should be doing, what they like, and what typical child development is like. 

I found out that watching Teletubbies is an actual skill that Maddie needed to learn (sit, attend, focus, respond to directions, mimic motions).  I sure wasn't watching that before Cassie was old enough to clamor for it. 

Would we be into the silly dances and High School Musical shows and crazy things kids their age say?  If it weren't for Cassie, the answer would be no.

I realized not all of Maddie's issues were because she had Angelman Syndrome, she acted like that because she was a three year old!  No other reason needed!

When there is a substitute aide at school, they have sometimes taken Cassie out of class to help with Maddie's tolieting.  That drives me crazy!  Tolieting is not her job at home and it should not be her job at school.  Call me and I'll come up to school, but do not make it the job of an 8 year old.  Just don't.

Its very important to me that Cassie be allowed to be Cassie.  She is not Mom #2, she is not the default caregiver, she is not responsible for her sister anymore than she is responsible for her brothers.  I want to be respectful of her feelings and emotions, so I have to let her be mad, sad, irritated, and frustrated with her sister, just like she would with ANY sister.  I have to stop Cassie from doing so much, because she is so giving of herself, she will assist Maddie regardless of her own wishes.  And while that is a noble and beautiful thing to do, its important for her development that she have her childhood.

And Cassie, if you read this, please know how much I love and appreciate and admire you.  You're the best sister Maddie could ever have, the best daughter I could ever wish for.  Remember that always.

To know you are not alone, that in itself is reason enough to join the list.

There is something healing about sharing your experience.  Maybe healing isn't the right word.  Validating?  Personally, to share the things I have been through, especially the negatives, makes it seem like there was more of a purpose, like if I can tell someone else so it goes better for them, then the pain it was for me is lessened or at least worthwhile.  If that makes any sense!     

And to share the positives.  I've been motivated and inspired hundreds of times by the families on the list, that I want to share our good times with others too.  And, TBH, most of my other friends don't get it that Maddie's accomplishments are *so* huge for her.  I get that her personal development schedule is so different than other kids, its hard for them to appreciate her milestones.

Some of my best friends were found on this list.  And some I have yet to even meet in person.  (note to Jill - - I'm coming to see you!!!  Eventually!  LOL!)   

What is a listserv?  Its like an email group, messages go out to everyone who is signed up or the group/on the list.  You can be an active participant, you can lurk, you can reply directly to other individuals without replying to the whole list, the list can really be whatever you want it to be, whatever meets your needs.

Listserv Sign-up

The Angelman Syndrome Listserv is a support and information sharing network comprised of parents, grandparents, aunts, uncles, siblings, friends, teachers and therapists, all people who care for or about a person with Angelman Syndrome. It is a place to share thoughts, feelings, ideas and to learn more about all aspects of Angelman Syndrome, from daily living tips to scientific and medical information. The Angelman Listserv currently has almost 300 families and individuals subscribed. The support and knowledge is unmatched.

To subscribe, just follow these simple instructions:

1. Send a message to listserv@ucsd.edu
2. In the body of the message type: add angelman-l (please note this is a lower case L, not a number one)
3. Leave the subject line blank
4. Send your email.

If your email program will not allow you to send a message with a blank subject line, you can accept the default subject or type <no subject> in the subject line. Soon after you send your request, you will receive a confirmation message via email and will immediately begin to receive mail!

If you have difficulty subscribing, please contact angelman-l-owner@mailman.ucsd.edu

Jason does so many things and I think "Awww!  Cassie would do the same thing with the phone when she was small!" or "Awww!  Andrew would do that same silly joke when he was two!" 

I don't get to go back to Maddie's younger years because I don't see anybody like her.  So if I see Camille thinking through how to sneak into my bag, see Rocky's grin planning out his next mischievous move, watch Delaney's purposeful errors with her augmentative communication device, see Emma draw and ride her trike, or feel the grasp of Eleanor's hands while helping her step... those are my chances to remember what Maddie was like at those times in her life.

So I feel a real connection to these children and their families.  I was excited to be going to Pennsylvania on Tuesday. It was going to be my first semi-professional opportunity to attend an IEP (individual education plan) meeting for someone other than close friends.

I was thrilled at the opportunity to go DO something for a child I care about.  I knew I could attend this meeting and accomplish something for E.  I'm sure part of it is feeling like I am redeeming myself for stumbling through this type of meeting for Maddie.

I enjoy giving out IEP advice.  Those are hard meetings!  Its taken me dozens of conferences and seminars, many volumes of books, and a gazillion google searches to learn this stuff.  Other moms have done the same for me, and it feels good to pass that act of kindness on. 

But my proclaimed goal has always been to help the other parent to understand the process, understand what the law says, anticipate what stumbling blocks they will face, be able to ask the right questions, and to remember to be firm.

I let this trip to PA become about *me*.  I wanted to do this for the little girl.  I wanted to make sure she made it into kindergarten next year.  I want to plan for a smooth transition from preschool.  I wanted to make sure all of her accommodations are in place at the start of the year.  I wanted to make sure that her teacher and aide had professional training before the school year began.

I didn't realize this until L said "You don't have to come.  I'm going to try this first meeting on my own, if there is a part two to this meeting, then I'll need you to come."   I was so sad for myself! 

Now that I've had a chance to think about it, I'm happy for L.  This is what I always hope to do...  I don't want to come in and win for them, I want to give them the tools to do it themselves. 

I know L will do a great job.   There might not even be a second meeting.  But if there is, I'd love to help.  Not take over, but help.

And I'd enjoy giving IEP advice to anyone who wants to contact me.  Good luck everyone!

The girl, named Lauren, has a very rare condition known as Angelman Syndrome.  Doctors know very little about the condition, which makes it hard to diagnose and even harder to treat.  One thing that helps is riding a custom-built 3-wheel bike, according to Lauren's physiotherapist.  This would help Lauren dramatically in her development and growth.  The downside?  A bike like this costs nearly $5,000 to have built to her specifications.  

This is where the MSRA stepped in last Tuesday.  The association and the Children's Rehabilitation Foundation came together to give Lauren the wheels she needs.  Was it worth it?  Look at the smile on her face and decide for yourself.

Lauren with her family and Gay Kirby (left), executive director of the Children's Rehabilitation Foundation 

Mom's in charge of giving directions;  Lauren's in charge of ignoring them.

That's it for this week. If you want to know more about Lauren, or about Angelman Syndrome, check out the awesome website her parents have set up for her.  And for more info on the Children's Rehabilitation Foundation, check their website (which ain't too shabby either).

I'll be in Brandon this weekend, so let's hope the Wheat City will bring out their best for the camera before Monday's post!

This dates back to pre-blog, so I'll recount the events now.

It was a Friday, and as soon as she got off the bus and on to our golf cart (we have a long driveway), Maddie slipped and fell.  At the elbow, her arm was completely turned in the wrong direction, like her elbow was on the opposite side.

End result: four hours in the ER with a complete dislocation of the elbow and a broken arm!  She was in an immense amount of pain (which brought on seizures) and none of the medications that were given to calm her actually worked sufficient enough to calm her.  She was in much less pain once the doctor finally arrived and un-dislocated it.  The nurses were incredibly great with her.  They spoke right to her and asked her questions.  Very respectful.
 
She was in a sling for four days until the swelling went down from the dislocation.  She was in a significant amount of pain, even with pain medication, but I wasn't sure if it was due to pain from the break not being set in a permanent cast or if it was pain from the muscle/ligament damage from being dislocated. 

Maddie was in the regular cast for a month or so.   Summer is a bad time to be in a cast!  Balance is not her strong suit to begin with, so this bulky appendage on one side was hard to manage!  She couldn't go up and down the stairs independently.  We had a cast cover that she wore in the pool, but it was a bear to get on and would sometimes leak. 

When the cast was removed, we then got to enjoy weeks of rehabilitation therapy.  "Work through the pain" didn't make much sense to her, and it was basically a futile effort.  I was really worried she would not regain functional use of her arm.

We went to the Angelman Syndrome National Conference in St. Louis in July 2007.  I'm cheap, and thought ahead to bring cereal for breakfast for the kids.  Eating in the hotel room and Maddie had to sit and hold the bowl in one hand and eat with the other.  So the conference was the best therapy of the summer for Maddie.

She still has residual pain, complains of it every morning.  I can only hope that in time it lessens.  I'm *SO* glad its not 2007!

As much as Maddie loved her first softball practice, her second went horribly.  She didn't want to participate at all.  Friday, getting ready for her third practice, I asked her if she was going to wear her glove?  "NO."  Do you want to go to practice? "NO." Do you want to be on the ball team? "NO."

What could I do but respect her wishes?  She was very clear that she does not think softball is the sport for her.  And that's fine, isn't it? 

I didn't even want her to play softball, right?  http://mcdj.wordpress.com/2008/05/17/play-ball-1/

Then why am I sad about it? 

I hear plenty of stupid comments and try to mostly let them slide because I want to assume that people generally mean well.  (Hmmm, "try". . . "mostly" . . . "assume" . . . "generally" - - obviously I'm still working on this!)

All of the fourth graders at our school took a trip to Greenfield Village.  As the chaperones are gathering up their assigned students and collecting tickets, a mom says "Oh, they let Maddie come on the trip?" 

What?!  They "LET" her?  Seriously?!  Oh and they let your dumbass be a freaking chaperone?

I was so mad!  This woman has known Maddie since first grade!  She knows that Maddie is and has been a full participant with her class.  We've had discussions about it!  Ugh.

The only good part was that another mom who just adores Maddie said "Well of course she came, she's in fourth grade!"

I was too upset to say anything at the time, but Yvonne you're the best.  I really thank you for speaking up on Maddie's behalf.  Especially because I didn't.

For Maddie, her sleep issues were definitely the worst between ages 3 and 6.  She had no sleep issues when she was really little, and in the past couple years it has gotten much better.  We have used melatonin since age 4-5.

Maddie's epilepsy is "episodic"  and sleep deprivation is one of her triggers (along with illness, overheating, and anxiety).  So managing her sleep is essential for her well being.  As a toddler, she could go 3 days without a wink of sleep.  We needed to "break" this cycle of sleeplessness that would occur every six weeks or so with chloral hydrate.  That is an AWFUL medicine, but it was our last resort.

Besides how tired WE are from those long nights, sleep is so important for all kids' brains to stop and process memory/experiences/learning and transer that knowledge from short term memory to long term memory.

melatonin: in nature, a hormone that is secreted by the pineal gland in the brain in response to darkness, and has been linked to regulation of circadian rhythms; a derivative of melatonin marketed as a health food supplement is commercially available

I give Maddie a 1mg sublingual quick release (GNC brand) that works within 15-20 minutes.  At the same time, I give her 3mg extended release tablet (Puritan Pride brand).  This combination does the trick of getting her asleep and keeping her asleep (for now).  If she wakes up before 4:30 am and does not go back to sleep on her own within ten minutes, she is given another of the quick release to get her back to sleep.

http://asclepius.com/iaso/wagstaffsleep.html

http://www.websciences.org/cftemplate/NAPS/archives/indiv.cfm?ID=19960095

And if YOU are an AS mom and are up reading this post at some insane hour...

Go to sleep! 

Now! 

Seriously!

Don't even finish reading this post! 

Take the years of putting up with Maddie not sleeping, add on the sleepless nights and interrupted sleep of nursing my other children, and the end result is a mom (ME) who now has sleep issues herself.  I *know* how important sleep is, how it regulates your mood, your weight, yada yada yada. 

http://www.health.harvard.edu/press_releases/importance_of_sleep_and_health.htm

I *know* I need more and better sleep.  But right now I am Pavlov's dog, conditioned to not sleep.  : (

Woof woof.

Neat!  Mentions his adopted daughter with Angelman Syndrome.

http://www.usatoday.com/life/music/news/2008-05-20-idol-songwriter_N.htm

http://tennessean.com/apps/pbcs.dll/article?AID=/20080522/COLUMNIST0501/805220344

: )

I have a good friend who talks a lot about the value of participating in sports, and I figured my kids aren't getting any younger, so during Easter Break I took all the kids up to the Township Hall with the intention of signing Cassidy up for softball and Andrew up for t-ball. 

The receptionist saw the gaggle of children with me and asked how many I was signing up.  "One boy and one girl."  Maddie raised her hand and started with "Me!  Me!  Me!"

She's never played ball or any organized sport outside of gym class at school.  I'd just finished with the Creative Dramatics class BS.  I really didn't want to sign her up!

But agreeing to sign her up was better than arguing with her in the Township Hall.  What could I say anyways that would be a good enough reason to deny her?  "Sorry, your mom is too lazy."

So I signed her up along with Andrew and Cassidy, just to shut her up, never really fully intending that she would actually be on a team.  I sign her up and wait for the coach to call and tell me what team she's assigned to.  Then I could have her drop out if need be.

I dread those first contact phone calls.  The ones where I have to try to explain Maddie over the phone.  She sounds so complicated and the wording is always so negative.  "Well she doesn't speak, and she can't really run or jump, and I'm not a sport-y person, so I don't know what Maddie's playing ball would actually look like."  Blah!

And over the phone, I can't tell what the person's reaction is, so I just keep talking and talking excessively.  Eventually I pause to breathe and the coach gets a word in.

She does offer up that there were a lot of girls that signed up for that age range, so some had to be bumped up to her league (minors - where the kids pitch themselves) from coach-pitch.  The coach says that her main goal is to teach the skills, not to win.  That it's most important for the kids to learn to protect themselves against being hurt by the ball.  (( tbh- I don't know how realistic that is for Maddie. )) She has suggestions for how we can make this work for Maddie. 

We end the phone call with my agreeing to call the Township Hall and ask that Maddie be switched to a coach-pitch team.  I thank her for being receptive and welcoming to Maddie. 

A minute later, she leaves me a voicemail, asking me to still bring Maddie to the first practice, so she can meet her and maybe it would work out to have her on this team. 

I did not expect that.  Who does that?  This woman had a guarunteed out, a way to NOT have my child on her team, and she didn't take it?  I shouldn't anticipate that people won't want her/me/us, but truth be told they usually don't!

Doug took all the kids to Maddie's first practice on Friday evening.  Right away, Maddie knew a girl there.  During the practice, Maddie participated in all of the different stations, catching and throwing, hitting the ball.  All the other girls were great with her, very encouraging. 

Cassidy practiced with the team too.  She did a great job too.  Drew and Jay kicked soccer balls around the field. 

So what to do? 

1. Leave her on this team, with a great coach who "gets it", but she won't be as able to participate in the games that fully.
2. Move her to a coach-pitch team, not knowing what the coach will be like and if he/she will be accepting of Maddie, but knowing she could have assistance with batting and an extra person in the outfield with her.
3. Move her to coach-pitch, same team as Cassidy.

 Seriously, what should I do?  Somebody tell me because this was not covered in my "how to parent" handbook.

OK OK!  *I* love this song.  It's a like mini workout.   Maddie and I were excited to see Oprah Cha Cha- ing earlier this week! Check it out!

http://watchoprahonline.com/oprah-cha-cha-slide-video-watch-oprah-learn-how-to-cha-cha-slide-with-kids/32/

I hope you liked it, I hope you danced!

: )