Abilities Expo Boston! 9/20-22

Amazing stuff happening here at the Abilities Expo in Boston. They have these expos in major cities all across the US. Here is the link: http://www.abilitiesexpo.com/boston/ And of course we are interested in seeing this. Wheelchair Dancing!

Inspiring innovation

*Ten Ways To Diss a Differently Abled Person

1. Make sure to leave your empty shopping carts in the special needs parking space.  Hey, no one was using it anyway.

2. Always park in the special needs space and if that is not available park as close as you possibly can to it.

3. This is an especially good one.  If you have a wheelchair user in your family that you see regularly, don't even consider making entry into your home more accessible.  Because you really don't have the time to consider affordable ramps like this.

4. Ignore the wheelchair user in all conversations and only focus on communicating with their parent or the able bodied people around them.

5.  Don't bother buying the child with special needs anything but grey utility sweatpants and sweatshirts for gifts. After all, isn't that the best thing to dress a person with special needs in?

6. Ask a person who uses a voice output device a question but don't wait for the answer.  Just as they have completed their response after laborious motor planning, turn away and miss the whole thing. Do this several times so that your sincerity really shows.

7. Turn around and frown at the differently abled person when they are participating in community gatherings, because they are ruining your day.

8. Additionally, make sure to shoo your children away from the wheelchair user on the playground, because (loud whisper) what if it's catching?

9. Yell at a parent or caregiver of a wheelchair user for parking in the special needs parking space because clearly the caregiver can walk.  What right do they have to use that space....even if the wheelchair user is actually in the car with them (at the pharmacy picking up meds that the pharmacist was actually coming out of the store to give them)?  But still those spaces are for handicappers only.

10. Use the word "retard" in any context.

Note these top 10 are not in order of importance - they are all important.  Also this list is garnered from my own and my friends experiences. For all of those close relatives and close friends who have considered ramps and slowing their pace down and are just sensitive in general to their differently abled relative or friend, god bless you.  And please consider holding classes for the not so naturally compassionate.

*You'll have to forgive my sarcasm in this post. A situation similar to the 10 I have listed above just happened to us this same day.

Guest Blogging At What To Expect Dot Com

Can you believe it!?

Check out my first post in the Word of Mom content area.  Click here to read my post.

There is so much great content on this site and including writing about diverse experiences like mine - which I think is very cool.

Here is the content of that post:

What I Learned by Being Mom to My Beautiful Warrior Princess Daughter

Me and a 5 year old Ellie on a beach in California.

My challenge when I was asked to write for WhatToExpect.com was to decide what to write.What do I have to offer when my parenting journey has been so different?If I write about my actual experiences will it resonate with this community?

In attempting to write for a new community of people, far more diverse than the family, friends, special needs parents, and differently abled people who read my blog, I had many starts and stops. Finally, frustrated I gave up. A day later, while blow-drying my hair, when I do my best thinking, I realized that the "expected/traditional path" is not so commonplace anymore — nor has it ever been. I define "traditional path" as a. getting pregnant, b. having a baby, c. taking baby home, and d. living happily ever after. (Yes, I did read all the fairy tale books my local library had to offer before I was 10.)

So here goes.

I have gained some perspective from getting to be the mother of my beautiful 10-year-old warrior princess, who happens to use a wheel chair, contend with quadriplegic cerebral palsy (CP), feeding and speech issues, reflux, but who also loves life, Fijits, dancing, and school.

When Ellie was born three months early, things went differently than I expected. I spent the first few years of her life worrying and fearing how she might turn out. Not that any parent has ever worried like this before... I did wonder if her CP would get worse, would she ever walk or talk or laugh? I worried, am I parenting her well, am I doing things right, can I handle this? Again, questions no other parent ever asks...

Time is a wonderful thing in that it heals all wounds and addresses all fears through the crucible of experience and the lens of perspective. Now that she is 10, I have a lot of answers to my questions as well as a decade of experience under my belt in dealing with complex situations and making really tough choices. Here are some things I learned:

It's relative. Anything deviating from the expected path of have baby/take baby home is hard. During Ellie's long stay in the Neonatal Intensive Care Unit (NICU), full-term babies would come in for a day or two because they had jaundice. Their parents were just as upset as we were to find themselves peering at their baby, rocking Lady Gaga worthy shades, tanning under the bili lights. The key is to honor your experience and that of other parents. Here's a silver lining for parents of jaundice babies: Our doctors in the NICU said their research shows that such babes have higher IQs.

Parenting muscles strengthen over time slowly as you build up to what you can deal with or find someone to help. I don't subscribe to the credo that life never gives you more than you can handle. In my experience, life has often given me way more than I could handle. I think a more accurate sentiment is that life will always give you more than you can handle because as a species we live in communities versus being nomads. We are meant to work together and receive and give help. Over the last 10 years our family has had loads of help from doctors, nurses, teachers, and other parents who could handle the situations we were facing and either taught us what to do or got someone else to do things beyond our reach. I think when the unexpected happens it's important to remember that you are not alone because it's easy and reasonable to get very overwhelmed. Having a baby is overwhelming.

When I was pregnant with Ellie, she and I had this ongoing conversation. Dave composed songs for her and sang to my belly. We were so overjoyed we didn't worry about the future. Then when she was born three months early we suddenly had a lot to worry about and no prior experience to rely on — like most first-time parents with some added complexities. Today we have parenting muscles that are still being toned by Ellie. But we have help in each other and in our community. It's all worked out into a life filled with love, laughter, and meaning.

You are the expert on your child because you are paying the closest attention — don't forget that. We were very luck to have a great neonatologist who told us right from the start to "watch the baby" versus the monitors. This became a habit and as all parents know — you are observing your baby and small child 24/7. We have had to make a million between a rock and a hard place style decisions and heard very scary prognoses. If I had believed what the doctors told us (basically that Ellie would be a vegetable), I would not have done a lot of the things I did that have been vital to Ellie's development.

No neurologist has the final word, as the brain is still the ultimate black box of medicine. If anything, the doctors as a rule predict the worse — which was their way of trying to prepare parents. In my case it made me fight all the harder for Ellie.

Bottom line is you can't always believe what the doctors say about outcomes because sometimes they are guessing about a future they cannot always predict. More importantly, all children with challenges benefit greatly when they have someone who will make an investment in them. Look at Temple Grandin or Helen Keller or Ellie. The key is not to give up or be devastated by a prognosis so that you lose your connection with your child and your hope and creativity.

Ask each important question three timesto three different experts in order to come to your own best conclusion. We learned from Wry, a fellow NICU parent. When you have to make tough decisions about the health of your child, it's always an exercise in weighing two evils. Which one will help the most with the least side effects? We learned that if you ask the same question of three different experts, you often get three different variations of one answer or three different answers. This really helped us think for ourselves but also weigh our options with different perspectives. This can also be time consuming but for medical interventions that will be life changing for your child, if you have the time, this is not a bad use of it.

Let your love lead you. Your love for and bond with your child is a mystical thing of mythic proportions. My heart opened up all the way when Ellie came into my world. It's the best love I have ever felt (and I love my husband dearly). This love for her has carried me through it all — and continues to. This love makes any challenge I have to go through worth it. Love has many, many expressions. Some expressions of love are subtler than others but if you are paying attention you will find a huge bounty no matter what differences you are facing.

Going Vegan = A Feminist Act...Who Knew?

By Ann Taintor

Who knew that me becoming a vegan was actually challenging societal gender norms?  I am bemused by the responses of some younger women and a few older women to me when they heard I have become vegan. They all said similar things along the lines of, "What is your husband going to eat?"  The body language that accompanies this question is a look of concern which leaves me wondering if what they are really asking is, "Will you have time to cook two meals?" And "Are you sure that's really wise in terms of caring for your family and keeping your husband happy?"

Receiving these questions just floored me - is it not 2013 versus 1813?

By Ann Taintor

My mother decided to be vegetarian when I was about 12 (at the same time I read Diet for a Small Planet and decided to become a vegan). What this meant for her however was cooking one meal for she and I and another meal for my father and two sisters. As you can guess - this was a lot of extra work. The jeering and criticisms of her alternative diet from the carnivores did not make for a harmonious home either. So it was short lived for her but not for me. I was a vegan until my mid twenties when I had a iron deficiency and then went vegetarian.  When Ellie was born as I have written about, I started eating meat again and did so until this January 2013.  To those of you who may have thought "See!" when I shared the iron deficiency - remember that I didn't say I was a very good vegan.  There were not the resources online (actually there was no  online other than email) available today.  And at that time I was a very, very poor artist living in Western Mass trying to figure out my life.  It was often a choice between should I buy this apple or this tube of paint? But that's another story.

Zooming back to the matter at hand, I am grateful to have found a mate who had no interest in a traditional, feminine mystique type, of marriage set up, where, as in the houses we were both raised in, the woman does all the cooking and cleaning and everyone sits down for meals together at the same time every evening. My experience with that growing up was to see how stressful all that cooking was on my mother. As a result she often over cooked the food and meals were a source of tension which only fed the fire of our family dysfunction.

Stemming from this, I never, ever wanted to have us all sit down at 5pm and have dinner. Ever. I rather not be married if this was the expectation. In fact, getting married at all was a stretch for me. I only did it to make sure Ellie was protected in all the ways children of married people are.  That, and to be totally truthful, I got tired of them stopping me in the emergency room as Ellie and Dave (she has his last name) would get ushered in and because I had a different last name they would stop me and say ask, "Who are you?" My exasperated reply was always, "I'm the mother!!!".  Seconds count when your kid has hydrocephalus - for crying out loud.  That had to end.

Orange Cashew Cream Dressing that Dave made
 when I was away on business.

Atop those strong sentiments, things with Ellie have also taken a non traditional path that meant differences in eating times etc. She only eats purees and does so about 5 times per day and before that was eating around the clock via drip feeds and had/has oral aversions.  So though we do sit down together regularly as a family usually on weekends, there is a lot of working with Ellie one to one around food and making it safe.  Additionally, Dave is not your traditional guy in that growing up he regularly cooked for his younger siblings.  He had a working mother and being the oldest he understood how hard she worked for both her job and the family - he didn't take it for granted.  As a result of all that cooking as a teenager, he knows how to fend for himself and others in the kitchen very well and did so before we met. Lucky me.

For the record - I do not cook meals every day for anyone but Ellie.  Dave and I cook for each other when we are already making something for ourselves.   We coordinate and both cook larger dishes like a soup or a casserole but again not every day.  He more often then not will make me dinner because he eats it regularly, whereas I do not. And he makes the best big salads that are filled with nuts and tons of veg and hummus for example.  I have been into making new vegan concoctions like lentil and rice chard rolls with cashew cream and smothered in tomato sauce and tons of green tonics and juices and cold soups - basically going 80% raw and 20% cooked. And he eats what I make when he wants and vice versa. But it's casual and 50/50.   Other than Ellie's diet which I made up all the recipes for and watch over very closely, we both do the cooking.

To answer the question directly, "What does your husband think (of me going vegan)", here is a list of his responses:

Life Alive inspired Buddha Bowl that Dave made

• He bought us a half farm share at the local organic farm
• He and Ellie planted a ton of seedlings that he purchased the seeds for by mail order and all the soil and pots etc., that he waters and tends to daily with Ellie when she can be torn away from her fijits who are a little more exciting than seedlings - though when they first popped out of the soil she was very excited! ;-)
• He drinks green juices with me every day of his own volition
• He solicits the choice and regularly encourages us to go to vegan restaurants.
• He cut back on eating so much meat and increased his veggie intake and has lost 25 pounds doing so (that's been a really great side effect of me going vegan)
• One night I came in and he was about to watch Vegecate on Netflix and asked me to join him. Since watching that he is researching how to get protein and iron out of plant based foods.

In sum, his reaction has been very supportive and he is still reacting in a way that is making me very happy in that he sees the positive changes in me and wants to come along down this path - in his own way but near enough to me just the same. He has lost weight and is feeling better. There is a lightness between us.  So that is what he thinks of it and how he responded to me going vegan for the 2013 record.

I think there are all different ways to structure a life and a marriage. The more creativity that is worked into that structuring the more room for individual expression and bliss. I am always alarmed and saddened to see that the legacy of hundreds of years of gender inequality is still with us. I lecture on this topic in my graduate courses so I know the stats. But in this question, "What is your husband going to eat?" there is found all that inequality as a societal norm - like DNA coding that seems very hard to change.

Irish Firsts or 3 Beautiful Firsts

1. Ellie at Nomad's

1.  Figuring out that wheelchair vans with ramps and tie downs are available - and easily so  - in Dublin, Ireland. Result: no more extra lifting of Ellie and schlepping of car seats! Woot and dah...

2.  First time finding the beach wheelchair and using it!  We were all jet lagged from returning from Ireland last Friday. So on Sunday morning, being up very early we got to the beach before 9am (it's an hour and 30 minutes away so that is saying something for us).  As a result there was a beach wheelchair available. AND the head supervisor of the beach was insistent we use it (when she saw us gearing up to drag Ellie in her wheelchair across the beach).  She gave me her number to call her next time so even if one was not there they would find one.   Ellie did great too. I was very worried about her stability because it only had a waist belt and no shoulder straps and the beach is rough going. But she sat criss cross style and was very stable.  Big victory for us and our backs and Ellie. We used it to get her to the water as well.

2. Amazing salad from Rustic Stone

3.  Overnight away from Ellie.  And guess what? Everyone was completely fine at the end of the day and next day. It was really, really nice to have time with Dave and break that barrier of our fear of leaving her.  That said, we left her with the NICU nurse who cares for Ellie when she's not doing her day job so Ellie was in great hands and loved having a girls night out away from mom and dad.

It's been a good couple of weeks. 

Pictures from the top to bottom:

1. Ellie in Nomad's just off Grafton Street in Dublin's City Center. The food is spectacular (they even had an amazing coconut Thai tofu entrée ) and the owner is lovely and made us feel right at home.

3. Dave and I on our overnight away.

2. The most amazing salad we had at Rustic Stone right of George's street. Such an amazing and wonderful food experience. Highly recommend both restaurants. 

Dublin rocks some amazing food. I was even able to get fresh squeezed green juice for Ellie at Cornucopia - which is a block up from Grafton street if you take a left after Brown Thomas.  The vegan food is great there too and the people are lovely. We ate there several times. 

3. Dave and I at our friend Anto's wedding on our overnight. 

4. The Harry Potter like and wonderful library at Trinity College. I highly recommend taking the tour which is very interesting and fun.  

5. Ellie and Dave at Bewley's which has the best atmosphere and cherry buns and cappuccinos. 

4. Library at Trinity

4. Library at Trinity College Dublin

5. Ellie and Dave at Bewley's - yum.

Ryn-newal

In January of this year I set out to transform my life.  I had been feeling tired every morning, Ellie wasn't sleeping at all...again, and I was just sick and tired of being tired and in pain all the time from a variety of things namely osteoarthritis to start.  And I am not even that old to have such a thing which incidentally has my doctors also scratching their heads.   I was also still so wound up from the previous months of finishing my dissertation and hosting a huge family party and dealing with a promotion which brought with it a lot of extra work.  No rest for the weary and I was weary.

Last summer I started exercising and that helped. I road my bike all summer which was a lovely thing. Though I was limited on how much I could ride by time but also Boston traffic which is a killer. The good people have deemed themselves "massholes" and they live up to this reputation and sadly as a result many cyclists are killed each year. So during peak traffic hours I don't ride. Then the bad weather hit...

However, from my bike racing days I had a perfectly good wind trainer collecting dust in my attic. I pulled it out and have been riding away, nearly every day regardless of weather or traffic. Now that it's warm I can do both inside or outside rides but ride every day.

This was a good start. Then I decided to give up meat, dairy, fish, sugar, caffeine, white flour, and gluten...yep it's a big list.   I was inspired by kriscarr.com and her books. Her book Crazy Sexy Diet contains a great deal of information I had heard over the years in various places but not so well explained. It's worth the read. 

As a result I pulled out a champion juicer that Dave had found at a low, low price on Ebay in 2003 that was collecting dust and began to use it every day to make versions of Kris' Make Juice Not War juice. I started drinking 16 to 32 ounces per day as well as blending up green drinks that were originally inspired by whole foods fresh smoothies which now are not nearly as tasty as what I blend myself. Instead of high glycemic fruits I blend up spinach and green apple and cucumber, cilantro and hemp seeds with water and fresh lemon. Yum.  

By doing all of this I lost 18 pounds and no longer wake up in the middle of the night from aching joints.  (Gluten has been linked to arthritis.)  The diet Kris proposes is a low inflammation diet - which is also really important for Ellie. I realized that some of her food is really high in inflammatory food so I changed that. For example I make her a dish called Green Goodness that was avocado, apple sauce, and strawberry coconut yogurt. Very high in sugar.  So I changed it to avocado, cucumber, mint and fresh pear and sometimes some plain coconut yogurt. And she eats it and loves it. I also add in hemp seeds. 

Instead of roasting her sweet potatoes for her puree I cook them at a low temperature so that they don't caramelize (which increases the sugar content). I also started her on 16 ounces of the green juice and got her off dairy.  As a result her nose is not constantly running and she has been sleeping through the night - nearly every night since she started getting the green juice. For those of you who have been following this blog for awhile - you know that is saying something!

I also have had allergies for years starting about 10 years ago that have kept me up hacking away and wiping my nose while I am trying to present.  Not fun. Cutting out dairy has changed all that. And I love cheese so it had to take something big and not having any allergic reaction to the tree pollen etc. is a huge change in my world for the better. 

I have also been meditating and practicing being more mindful.  All of this has turned out to be a way to transform my inner life and in so doing my outer life. I am 18 pounds lighter, way more rested because Ellie is sleeping and I am making a point to make sleep a priority, and so much happier.  I feel like I am finally decompressing from 10 years of really hard times in some ways (good times too).  But let's be honest, when you have a baby early and almost both die in the process then proceed through 134 days in the NICU and through multiple surgeries, illnesses, seizures, dealing with back issues of your own, having the expense of transforming your home to be accessible, and on and on and on - there's a lot to decompress from. And stuff is still going on that is really challenging to do with Cerebral Palsy as Ellie grows, e.g., her muscles and bones not keeping up with her growth, scoliosis, hip displasia, and on and on. 

So how do you get renewal out of that?  From the inside out in my case. I thought - I can't control her not sleeping or the stress of the world but I can control what goes into my mouth and what I think. The first part of that is way easier by the way.  Choices for eating are much more explicit and easy to manage than choices for what I think. But I am working on transforming both to be more positive, hopeful, proactive, abundant and most of all nourishing (for body and soul). And it's working. 

Often preemie blogs end by the time the kid is 8 or so.  I understand that.  But I want to keep going. Ellie's blog has been a way to keep time with myself, reach out to others in hopefully a helpful way, make connections that have taught me loads. There's a lot to report on, on this end.  

I wanted to share some things that have helped.

Pictures:
1. One green juice and one carrot, ginger, beet root juice
2. Ellie on Easter morning finding gifts from the Easter Bunny. Fijit ears to replace the ones that someone pulled out....very exciting indeed!