Every year starting in November I join the ranks of all the other wistful writers who hope that signing up for National Novel Writing Month, aka Nanowrimo, will turn them into a novelist.
This year I've barely had time to write Facebook status updates much less anything resembling a novel. And I know that signing up to write 50,000 words in a month isn't going to change that. So I've decided that instead of writing a novel, I'm going to let out all of the things that I've held back on writing all of these years because I've been afraid to hurt someone's feelings, or to reveal the shitty person I really am.
You know what? I just turned 40. My life clock is ticking in a serious way and I don't have time to hold back just because you can't take it.  So here goes, day 1, here's some shit I'm afraid to say:
The fact that my son has Down syndrome sucks. I put a brave face on it because I don't want to reinforce all of the negative stereotypes that are causing people to abort Down syndrome out of existence, but the truth is, I hate that my son has to work so much harder than everybody else just to reach the basic milestones that other people take for granted.
I hate to admit it but I am a competitive mom. How well my kids are doing feels like a reflection on me. I've put aside my career for years to help these little fuckers be the best they can be, and for what?
With Down syndrome it doesn't matter how much of a rockstar mom I might be, it's going to take my kid longer to accomplish things, and he probably will never be able to accomplish some of the most basic skills in life, like driving a car or having a family of his own someday. That's a hard pill for a competitive mom to swallow.
Last month was National Down Syndrome Awareness Month, and I started off the month strong, posting positive little tidbits about my kid so people could see that his life is worth living.
But then someone asked me about cognition. And I wanted to respond to her question. Because most people won't say it, but what they really want to know when they find out my son has an extra chromosome is "how stupid is having Down syndrome going to make him".
And I know that I shouldn't say the word stupid. I know that no matter what word we use to describe it, that stupid is the word that we're really afraid of. That's why we don't use the word retarded or mentally handicapped anymore. And eventually we won't use the term cognitively impaired anymore because people will begin using that in a negative way too. Because no matter what we call it what we are actually talking about is intelligence, and intelligence is impacted by Down syndrome.
In answer to the cognition question, I don't know what this will mean for my son. All I know that he will not be as intelligent as he would have been if he didn't have it. And that sucks.
Which isn't to say that I don't worry about my other kid too, I just worry about him in a different way. I worry that he'll be a drug addict or an alcoholic or teen parent. I don't worry about that with Benny. So, in that way Down syndrome is great. But when I see other kids his age talking in full sentences or able to understand complex concepts like "Can you put this in the trash?" my heart breaks a little bit.
At two, the differences aren't that obvious yet, so I know that my heart breaking now is nothing compared to how hard it will be as my son gets older. The differences will become more and more obvious. Right now he makes friends fairly easily, and none of them seem to mind that he only has a few words, or that his coloring skills are incredibly limited.
There is a reason that anytime a person with Down syndrome accomplishes something that typical people do all of the time everyone makes such a big deal out of it. We are all terrified that our kids will never be able to do that.
I have mixed feelings about it. Every time someone shares that a person with Down syndrome got a job or got married or went to the prom I feel torn. On the one hand it does give me hope that my son will be able to have these things too. On the other hand it makes me sad that these things are really not that extraordinary for typical people, and it seems that it's the most that I can hope for because my son has Down syndrome.
But I'm still that competitive mom. I want my son to do extraordinary things. If he wants to be a surgeon or a novelist or fly to the moon, I want him to be able to do it. If he wants to get married and have kids, I want him to be able to do it. 
But the reality is that Down syndrome can be very limiting. In every single one of his cells my son has an extra 21st chromosome that fucks everything up for him. We do everything we can to offset it, he gets therapies and supplements and specialized medical care, but at the end of the day, it's still there, and it's still harder for him than it would be if he didn't have it.
Which is why I love my son but I hate Down syndrome. So there, I said it. The shit that I didn't want to say. Tomorrow I'll say more shit I'm afraid to say. This whole month of November is going to be a shitstorm, and I'm not just talking about the election, but you can better believe it's going to come up, because that is some serious shit right there. 
Thank you for joining me. I apologize if I've offended your sensibilities with my cursing or my honesty, but I can tell you that it's only going to get worse. Feel free to ignore my posts altogether throughout the month of November, as I will be continuing on this cathartic journey of oversharing until the end of nanowrimo. If you are easily offended I will see you in December, when I will return to my regularly scheduled programming.

Sandra McElwee, Sean’s mom and costar in the show “Born this Way”, has been advocating for her son Sean since he was 3 months old. She’s written books, presented all over the country and even signed up to participate in a reality show all for one sole purpose, to make the world a better place for people with Down syndrome.

In this episode we caught up with Sandra to ask her about how the reality show stardom is impacting her family, her experience as a writer and presenter on inclusive education and how the show is contributing to her goals of inclusion and acceptance for all people with Down syndrome.

We are so excited to release this episode on World Down Syndrome Day! Sandra has been such a pioneer for Down syndrome and her work presenting and writing about inclusive education has changed classrooms around the country.
​
Please enjoy and share our latest episode of T21 Action!

You can see more episodes of T21 Action on our podcasting site, T21 Action.weebly.com.

And if you haven't seen "Born this Way" yet, here's a clip from Season 1, Episode 4 where Sean "golfs for a hot babe". 

MORE ABOUT SANDRA

​Sandra Assimotos McElwee is an advocate for unborn babies with Down syndrome and created one of the first websites for parents with a prenatal diagnosis. Author of three books  McElwee contributed to the books, "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives,"  and "You Will Dream New Dreams, Inspiring Personal Stories by Parents of Children with Disabilities."
​Married over twenty-two years to Sean's father, Rick , they enjoy traveling and participating in Sean's sports activities.  A medical sales professional, McElwee's most important job is being Sean's mother.  

Sandra's website:
www.whostheslowlearner.com
Link to the 20 year study mentioned in the podcast:
http://www.mcie.org/usermedia/application/6/inclusion_works_final.pdf

The year before I conceived my son with Down syndrome I had two ectopic pregnancies and a miscarriage.  Each time we had a failed pregnancy the OB told us that “this just happens” and that we “should keep trying”.
 
We were not told that the methotrexate I was given to stop the ectopic pregnancies from growing depletes folate from the body.  We were not instructed to take additional folate before trying to conceive again.  We weren’t told that folate deficiency could lead to more ectopic pregnancies, miscarriages, failure to conceive or birth defects like Down syndrome.
 
After my son was born with Down syndrome I began researching potential causes.  I joined groups that talked about the medical aspects of Down syndrome, and the term MTHFR mutation kept coming up.
 
Someone posted an article about how people with a certain type of MTHFR genetic mutation are unable to convert the synthetic version of folate, typically called folic acid, into folate.  Instead, the folic acid plugs the cell walls and blocks the cells from being able to access folate in the body.  The article listed a series of birth defects caused by this, and my heart stopped as I read the list.

I finally asked my doctor to be tested for an MTHFR mutation.  My labs came back showing a whole host of issues.  As my doctor read through the list he said “And you’re negative for MTHFR mutations.”  I was shocked, and said, “Really? That’s so surprising!”  He looked again, “No, I’m sorry, I misread. You actually have two copies of the C677T mutation. But it’s nothing to worry about.”
 
I’m not sure my doctor fully understood what this gene mutation really meant. And although it was merely confirmation of what I had already suspected, I was devastated. 
 
I sent an email to all of my family members to let them know that I had a genetic mutation called MTHFR and that they should get tested as it is a hereditary condition.  I expected that they would be shocked and upset like I had been to find this out, but I didn't hear much of anything back. At this point I think most of them still have not gotten tested, and most of my family members who I've talked to don't seem to be overly concerned by this news for some reason. Only my cousins who have children with medical issues contacted me. 
 
“All I can think is motherfucker!” my cousin whose youngest son has autism wrote me.  “Yep!” I wrote back, “Sure is!”
 
I am just now starting down the path to learn more about what all of this means. 
 
I know that I can’t process toxins like other people; my body is just not able to filter them as well.  This is a bummer for me, because I am old enough to have mercury fillings, I grew up surrounded by poorly managed uranium mining on the Navajo reservation and crop spraying during the summers in Illinois. I currently live in Colorado, a state that is fracking as fast as it can. 
 
The only good part about it is that I finally understand why I have had so many hidden health problems for so many years. 
 
Because I have two copies of the C677T gene mutation, I know for a fact that both of my sons have at least one copy.  I haven’t had them tested yet to find out, but in the meantime I’ve taken all forms of synthetic folic acid out of our diet, and I’ve changed to a multivitamin that contains the natural form of folate - methylfolate. (Here's a list of prenatal vitamins for people with MTHFR mutations)
 
I am not doing significantly better yet, and am still in the process of figuring out what I need to do to help my body now that I know this information.
 
If you are struggling with infertility issues, have had a miscarriage or a child born with a neural tube defect, please ask your doctor to test you for an MTHFR mutation. And please share this information with anyone you know that is trying to conceive. 
 
Eventually I hope that prenatal vitamins containing synthetic folic acid are just taken off the market. But in the meantime, it’s important to get this information out.  I just wish my doctors had told me about this years ago.  It would have saved me so much heartache.

Not every doctor sees Down syndrome as a treatable condition.  Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome".

Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson.

Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore.  

Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson.

All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high. 

I am so grateful that we discovered this fairly early on.  My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is.  

​Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue.

After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast.

The result is this truly amazing interview that I am so very proud of.  I hope that you will listen to and share this podcast with anyone you think might benefit. 

A few months ago my friend Rebecca called me and said "I have an idea."  She wanted to create a podcast about Down syndrome.  We decided to publish the first episode on October 21st, for Down Syndrome Awareness Month.

For our first episode I interviewed our friend Elizabeth Jeub on her project "Know Us", a photo and story essay booklet for new parents in the Front Range Area.  We talked a lot about the inspiration for her project, our experiences receiving a Down syndrome diagnosis, and what we wished had been done differently.

Today we published our second podcast, an interview with Rebecca as she talks about preparing to teach her first birthing preparation class specifically for parents who have received a diagnosis.  

Please have a listen and share your feedback with us here or on t21action.weebly.com.

This simple, natural fortification method for a high calorie infant formula helped my son Benny stay healthy and gain weight before his open heart surgery at four months old.  

It's hard to find time to write these days, and I'm participating in "National Novel Writing Month" throughout the month of November.

I've been working very hard keeping my two children alive. With chasing after my 14 month old and keeping up with all of my 12 year olds activities, my time to sit down and write is already very limited, so I will be restricting my writing to my novel until November ends.

Thank you for your support and understanding.  Feel free to harass me if you notice me posting on Facebook, writing unnecessary texts or emails and other activities that indicate that I'm slacking off when I should be working on my novel.

I'll see you in December. 

:) Taymar

I've just come back from a trip to help a friend recover from a nervous breakdown. While I was there I cooked dishes that I felt would help her to recover her health and wellness. These are a mixture of foods that I have learned to make from the GAPS diet, Nourishing Traditions as well as from my family and experience.

Here are directions to continue eating for wellness throughout her recovery. I am putting it here as a reference for my friend, as well as for other people who may need ideas to help with their own healing.

Prescription for continued healing:

Eat. Now is not the time to limit calories. The anxiety might feel like a tight knot in your stomach and you may have to force yourself to eat at times, but make sure you get enough to eat and drink. This will help to signal to your brain that you are safe and secure as well as giving you enough fuel to heal.

For now, continue to avoid caffeine and sugar. As tough as this is, right now you only want to consume things that will help you to relax.

Be kind and gentle with yourself. If you slip up and stay up later than you meant to, or cave in to a cup of coffee that is okay. These are guidelines to help you, not hard fast rules.

Start the day off with a healing mantra: I am loved, I am secure, I am safe. Say it in your head or out loud while taking deep breaths and stretches. You are loved, you are secure, you are safe.

Bone broth helps to heal the gut and is full of wonderful minerals and nutrients.  Serve yourself up a small cup of bone broth and continue to sip on small cups frequently throughout the day. I've left you a big jar of bone broth in the fridge. Heat that up on the stove until it's nice and hot, transfer to a bowl and add a spoonful of sauerkraut or plain yogurt for probiotic support. 

Once the jar of broth is gone, you can make a perpetual chicken bone broth. Or you can make some more bone broth from the organic grass-fed beef bones in your freezer. My favorite bone broth recipes are from the Nourished Kitchen.

Follow up your morning cup of bone broth with plenty of good fats and protein. A hard-boiled pasture raised egg is nice, you can slice it up with some avocado and sprinkle celtic sea salt on it. I'm getting hungry just thinking about it.

Dark green leafy vegetables are full of healthy vitamins and minerals. Eating them in the morning with your egg and broth will jumpstart your day. Here is a recipe for quick leafy greens that makes a great snack or side dish for any meal of the day. 

Quick Greens Recipe*
1 generous handful of dark leafy greens (e.g. Kale, Swiss Chard, Spinach)
1 Tsp Grass-fed Butter
1/2 Tsp Lemon Juice (or just squeeze half a lemon)
1/2 Tsp Bragg's Amino Acids
1/4 Tsp Garlic Powder

Sauté some combination of leafy greens in grass-fed butter. Sprinkle some bragg's amino acids, lemon and garlic powder on it for flavor. Don't overcook so that it's a mushy mess - as soon as it turns bright green you can turn the heat off.  

For extra yum:
Add some chopped onions or diced garlic to the butter before you add the greens.
Make it a salad:
Soak raw red onion slices in a mixture of half lemon and half amino acids for 15 minutes, add to lightly sautéed greens and serve with assorted yummy salad ingredients like - cooked chunks of sweet potato, goat cheese crumbles, pine nuts, marinated mushrooms, etc. 

*A note about my recipes - I've put amounts here to make it more recipe-like, but I honestly never measure, I just add the amount that feels right. As you experiment with cooking this stuff you will discover the amounts that feel right to you. 

Liver is the powerhouse of food. Patè is a nice way to sneak in some liver. Spread it on a piece of gluten free toast or a sliced cucumber. 

Easy Chicken Liver Patè
1 lb Organic Chicken Livers
1/4 cup Goat Milk
2 tbsp Grassfed Cow Butter
1/2 Red Onion
1 tsp Diced Garlic or Garlic Powder
1 sprig each Rosemary, Thyme and Marjoram 
1/4 Tsp Celtic Sea Salt
1/4 Tsp Fresh Cracked Pepper
1 Tbsp Chicken Bone Broth
1/4 Cup Goat Yogurt

Directions:
First soak the liver in goat milk for a few hours if you've got it. If you don't have time, even a few minutes will cut the tang of the liver down.
Next drain out the goat milk and sautée the liver and onions in a teaspoonful of butter, adding in garlic, fresh herbs, salt, pepper and a splash of bone broth. Set it aside to cool.
After it had cooled down for a few minutes I threw it all in the blender, added the yogurt and puréed it. 
I transferred this into a glass bowl and stuck it in the fridge. It should be good for 2-3 weeks in there, but hopefully you'll eat it well before that.

​So, I love to dream about making things better. And one of the things that I think about a lot is how poorly our neighborhoods are designed.

I hate the stress of trying to walk my dog down the street while pushing a stroller as cars whizz by, but there are no sidewalks in my neighborhood. I hate that my front door opens to a driveway where my car is parked, and that everyone in my neighborhood has houses that face streets, and front yards that they never use.

I feel lucky that I have met all of my neighbors, and that my neighborhood is fairly safe and friendly. Not many people have that in America. But that's not good enough. 

Why do we keep building these sad, uncomfortable neighborhoods? We just keep plopping down squares on grids of roads, dooming people to live isolated lives, separated from one another by their cars. These aren't conducive to community, and as a result many people feel alienated and lonely. While they are completely surrounded by buildings and cars, they don't have access to nature or a feeling of connection with each other.

Lately I've been inspired by circles and spirals and flowers. So I created this dream community in the shape of a flower. 

The roads are on the outside of the community, with plenty of parking. There is parking on the curbs of the roads and parking lots in the edges between the petals and the center circle. Houses each have their own parking area in the back along with private back and side yards. The front door of each house opens onto front porches. The "front yard" is a wide open space of parks and fields. Pedestrian pathways lead to the center circle.

The center circle is where all of the more "urban" stuff is located like a gym, health center, bed and breakfast, library, museum, market, shops, schools, theater, restaurants, bars and cafes. The more urban types of housing - apartments and tiny house villages - are located close to the circle and the accompanying larger parking areas. 

In between each "block", or in this case petal, are swaths of nature or horse pastures. There are trails leading through these swaths for people to walk, bike and ride horses.

At the outer edge of each petal are buildings related to the theme of the petal. In the farm or agriculture petals the edges hold barns and mills. In the parks and recreation petals, the edges hold multi-use infant and senior daycare centers that also are utilized for music, arts, science and technology play spaces, spiritual centers or sports centers. Obviously some homes are more "country living" and others are more "family" or "recreational", but all would have easy pedestrian access to both nature and community.

There would never be any reason to have to walk next to a car as all of the roads are completely separated from the pedestrian areas, and there are bridges over the pedestrian areas leading from the petal to the center circle.

Of course there should also be a cooperative element to this community. Each person would contribute something like 4 hours a week of service in exchange for room and board. Every hour worked beyond 4 hours a week would be paid $25, regardless of the occupation.

This would allow people to spend more time doing things they enjoy and free them from having to do so many things they don't like to do.

For instance, I would happily work a few extra hours at something I enjoy like writing or teaching if it meant that I could pay someone else to do some of the things I don't enjoy, like cleaning the house and doing the laundry. 

And with our basic survival needs easily met, there would be much more time for enjoying life's finer things like good food, good company, music, art, and education. (At least, these are the things I would enjoy more of, for others it might be something totally different, like more time to play sports or spend tinkering on projects.)

What would you do with the extra time?

I've spent a lot of time dreaming about this imaginary community. How safe I would feel. How much more connected. 

I sometimes feel ashamed of these dreams that I have, and have kept these thoughts mostly to myself for a long time. But I think that I'm not alone in feeling that our communities are not serving us.

I think everyone craves more time in nature at the same time that they crave more of a social connection. If our neighborhoods were built differently it would be possible to have both.