Things are hard

Things are hard right now.

I am not cut out to be a stay at home parent. This is only day two of Christmas "vacation" and I am losing my ever loving mind. Do you know what is getting me through? Alcohol. Baileys and coffee to be exact.

You might think this is a Down syndrome-is-hard-post. It's not. It's a 3-kids-including-2-two-year-olds-who-have-hit-their-terrible-twos-is-hard-post. However, the "highlight" of the afternoon was trying to get each of my naked 2 years old to pee on the potty. Because I had the bad sense to bring each in individually to allow them some time to sit and focus on the task at hand, Phoenix decided to poor an entire jug of water on the kitchen floor and encouraged the twin who was not with me to help her trash the front hallway.

And before someone gets all judgey and thinks "Well, that's what you get when you have DS". That is not my reality AT ALL.

It seems like every single day the twins do something that make me shake my head and think "your sister NEVER did that when she was that age". And she didn't. She was a great 2 year old and a great 3-5 year old. So while Phoenix was a spectacular only child, I'd say being a sibling doesn't often bring out the best in her. Except in moments like today when she shared her small stack of advent chocolate with her sisters and with me. That was surprisingly selfless.

Having 2 two year olds is such hard work. There is crying and screaming and hitting and pulling hair. Every day. Of course there are nice moments here and there. When they cuddle with me in the couch or lean in for a hug and kiss. But parenting right now is a lot more work than it is fun.

It's hard not only because there are 2 going through this stage, but there are 2 who are so much harder than their older sister was. So having her in NO WAY prepared me for having them.

Here they are on top of the kitchen table. I was hoping they couldn't take off the clothe diapers but no such luck

Phoenix wearing her party dress

Ash and Wren peering through the child  safe gate at the top of the stairs. Note the sleepers on backwards to keep them from taking them off at night. 

The only nice pictures I could get in their party dresses 

Phoenix practising her home reading. 

The odd time where Wren (L) and Ash are wearing matching shirts

Phoenix reading and small update

Phoenix's kindergarten year is going well. The class has started their home reading program which is doing wonders for her confidence in reading. She can read full sentences now and no longer requires me to put my finger under each word as she moves along the sentence. I feel like this is a big step. She's also using visual cues by looking at the pictures to help understand what she is about to read. These are awesome gains; I'm thrilled.

 

Parent teacher interviews went well with me spending a lot of the meeting providing suggestions for the teacher to try in order to work through some challenges that Phoenix is experiencing. Things like staged social situations and prepping Phoenix (and a small group of kids) for Phoenix to ask to join them to play. Also using high interest objects (like Elsa or Anna) to teach patterning concepts. I'm hoping these are implemented.

I also had a small win in terms of Phoenix's coding which wasn't changed like it should have been. After a few calls to Alberta Education I was presented with an IPP with the new code at the P/T conference. That felt wonderful. It was a nice acknowledgement that even though I am a parent putting up a fight, that I actually know what I'm talking about. Winning.


We had a big family party this past weekend (which I may or may not get to writing about). It was a loud and busy event with a lot of excitement and stimulation. I was very pleased to see her retreating upstairs for some quiet time when the noise and excitement was too much for her. A smart cookie this one is. She also knew to take some toys that she received up away from her sisters so as to have a chance to play with them by herself. Phoenix was incredibly well behaved and had a great time seeing her relatives.  She is such a joy.

Does DS define me?

Like so many other people, I like to think that DS isn't a huge part of my life. That what defines my life is my family, my job, my marriage, my friendships etc.

There's a new FB "game" where an app can access your FB posts and compile a list of your most commonly used words on social media. My most commonly used word is Down syndrome.

So while DS doesn't define me, it sure does occupy a lot of my mental energy and my focus. I think about it. I write about it. I photograph it. For 5 years I've been mentally and physically integrating it into my life. It's a part of me - an important part, a beautiful part.

Is DS an important part of your life too?

--

Dear Geneticist

You might be surprised that although almost 6 years have past I still remember our conversations as if they were yesterday. I remember you sitting us down, doing a diagram of our family trees and explaining to us the laundry list of characteristics and conditions which are closely associated with an extra 21st chromosome: low muscle tone, simian crease, sandle gap in her toes, leukemia, heart defects, gastrointestinal defects, reflux, hyperthyroidism, cognitive delay, obstructive sleep apnea, weakened immune system, frequent colds and upper respiratory infections including pneumonia, and Alzheimer's disease. It was an exhausting and disheartening list to listen to. 

You might also be surprised that 5 years later, feelings of anger still surface when I think about your list, which was full of negativity, of fearfulness and of blight. It was one of the worst conversations of my life, to be perfectly honest. 

I've come a long way since then. From being scared of the future and intimidated by the seemingly endless list of complications to being a confident mother, teacher and advocate who approaches meetings and appointments from a place of strength. From being in the shadow of the list, to being in the light of our experience. 

There's something you need to know about the research about medical conditions which can sometimes come along with DS - it didn't tell me anything helpful or specific about MY child. 

My child is her own unique individual whose life experience will be heavily influenced by our genes and our life. It will be influenced by my emphasis on early learning and on reading. It will be influenced by growing up as the older sister of identical twins. It will be influenced by growing up with experiences like hiking in the Rocky Mountains, watching the geese fly south and visiting her aunt on the East coast. It will be influenced by love, by laughter, by hope and by the acceptance that Phoenix will determine her own path in life - a path that is different than we originally envisioned, but a valuable life path nonetheless. 

These are influences which the geneticist never mentioned. 

These are the influences which shape a life, not just the presence of an extra chromosome. 

Dear Geneticist, there are some valuable pieces of information which you missed, when telling us about some of the possibilities for our child. 

You missed telling us that that she would bring my extended family closer together, that Phoenix would be the darling of the family and the favourite grandchild (sorry to the rest of the grandkids, please don't hold it against her). He didn't tell us that Phoenix is a great learner, would be reading by 5, that she would rock kindergarten and be into Frozen and Tinkerbell and Princess Sofia. 

You didn't mention that Phoenix would happen to be in a subset of kids who are extraordinarily healthy with a great immune system. And not just compared to other kids with DS. She's healthy even when compared to typical kids her age: kicking viruses butts and never missing school. My preemie twins (now 2) seem to have the same constitution, so I'd wager their healthy immune systems are due to genetic inheritance from us too. 

Dear Geneticist, my point is that children, and the potentiality of their life, cannot be quantified by an extensive list of things which could go wrong. 

A life is more than a list of attributes, a list of complications, a list of negative possibilities which may or may not directly affect health and happiness. A life is more than that. Phoenix is more that that. We all are. And when we try to reduce the quality of a life down to a list of complications, we are doing something wrong. 

Dear Geneticist, here is what I'd like to hear. I'd like to hear that people with DS are chasing their dreams. Children are being included in regular classrooms. Teenagers are getting jobs and learning independent living skills. Young adults are attending college programs designed to integrate young people with cognitive disabilities into college life. Adults are living independently, many with support, many in group home type situations and many with supportive roommates. 

Tell parents about Jamie Brewer who acts in American Horror Story. Tell them about Lauren Potter who acted in Glee. Tell them about Karen Gaffney who swam the English Channel. Tell them about the dozens of young entrepreneurs who are selling their art, their sewing, who are writing books and telling their stories. Please, just tell parents something good about their precious baby who has just come into this world. 

Some new pictures

 

This was last night with out after dinner walk. We met a neighbour who was walking her dog. Our neighbour made a point of taking the dog home quickly so she could grab a muzzle and allow the kids to safely interact with her cranky dog. The kids were incredibly gentle with Cleo and Cleo was great with them too and allowed them to handle her and Phoenix to walk her for a while.

 

 

 

 

 

This is Phoenix admiring a bare tree.  

 

On the public picnic table. 

Dancing. Because, why not?



 

Ash having fun



 

Out on an adventure with Jen

 

Phoenix taking chances on our climber

 

Phoenix practising her driving skills

I got to have some one on one time with Wren recently. It was so relaxed to have just one small person to care for

This was the girls first look at the pumpkins I bought for carving

Phoenix helped Grandma make soup



 

 

This was their (Ash and Wren's) first time to a local park

 

 

 

Phoenix immediately made a line for the swings and waited patiently for her turn. She's a total pro at the park and is so good at staying close and listening to our instructions

 

 

We met a park kid who decided he wanted to push the girls. He was a good little companion for a while

Ash

Wren



 

 

This was another walk a few weeks ago. We are all really enjoying the mild fall weather

Anyone can become disabled.

I remember when I was in my first year of parenting Phoenix. I was still reeling from the diagnosis and felt angry and judgemental. I was looking through my lense of ableism and judging Phoenix's life and possibilities.

One of the arguments for accepting a prenatal diagnosis that I read was the "Anyone can become disabled at any time. You don't end their life because of it. " argument. 

I hated that argument. I just felt that it was...reaching. That is was somehow not authentic. 

Because really, what are the chances of your child becoming seriously disabled because of an accident or a health crisis? Pretty low I always reckoned.

Knowing a whole slew now of other  parents within my community I finally get it. It really can happen. It happens all the time. There are no guarantees. It's never been more obvious to me as it is now that Mike has had his stoke.

Mike is now a person with a disability because a stroke is a brain injury. His brain has been permanently damaged. There is no question of this. The point of rehab is not to repair the brain. The point of rehab is to rewire the brain to use differently pathways now that the previous pathways no longer work. This is why rehab involves so many repetitive activities. Because when you forge a new path through a field, it takes many trips to carve out the new route.

So while Mike is my husband rather than my child, the lesson is just as valid. Disability happens. Some are born with it. Some develop it. Some through disease, some through environment, some through accident and some through the addition or subtraction of genetic material.

 But the lesson is the same. Disability happens and it is an inevitable part of life.

One for sorrow

One of the books that Phoenix likes me to read to her at night is a book of nursery rhymes given to her by Grandma Wendy. There are a number of rhymes that I like in this anthology, including the following one:

 This poem just resonates so strongly with me about my journey with accepting Down syndrome. The first step for me was definitely sorrow and the point we are at right now is joyful bliss as my girl continues in her progress with speech and seeks out quiet one on one time with the adults in her life. I am frequently flooded by joyful bliss during these times, enough so that my cup runs over and over and over.

Todays post is a link to an article featuring the perspectives of parents raising kids with DS:

http://www.huffingtonpost.com/entry/parents-of-kids-with-down-syndrome-what-they-wish-you-knew_560bf155e4b0dd850309f8f4

Dear Teacher, Sorry for being "THAT" parent.

Dear Teacher,

I'm sorry that I am "THAT" parent. That parent who calls and emails and sends notes in the agenda asking about how my child is able to keep up with the expectations of the classroom. That parent who asks you for the names of the kids my child, Phoenix, plays with, so we can ask her about her day. That parent who expected that as a school you would be fully prepared to support Phoenix on the first day of school, and every day thereafter.

Dear Teacher, please understand that my expectations for excellence lie not just with you, but with our entire system. Please know that I'm also that parent who challenged the school board on the special education coding they had given my child because I know that they didn't have the evidence to justify it.

As a teacher myself, I can understand the  difficulty of the balance between meeting the needs of all the students, producing and performing lesson plans, meeting the demands of the administration, co-ordinating with other professionals like OT and PT, preparing student agendas and handouts, writing report cards, writing and implementing IPP's.

 I know, it's a big job and I respect that you are doing this job to the best of your ability.

However, I'd like to tell you about MY job.

It's my job to love, nourish and support this little girl to be the best that she can be with the challenges that she has been born with. So while you focus on teaching my child the skills she will need to pass this year, I focus on the skills she will need for her lifetime. 

I look at barriers like weak hand muscles and poor fine motor skills and think "well, we'll just teach her how to type". I arrange OT to help us find ways to modify and adapt clothes to make them easier to put on and take off. I work with Phoenix on reading flashcards not only to teach her the fundamental skill of reading, but to have daily practise on her speech and articulation. I was the one to teach her sign language as a baby to help her communicate her wants and needs before she could speak. I advocate. I write. I research and I connect with others like me in the Down syndrome community who are blazing a trail demanding equality for our children.

You see, because Phoenix was born with an extra 21st chromosome, she falls into a group of people who are some of the most marginalized in our entire society. So not only do I worry about her ability to make friends, complete school work and negotiate the education system, I also worry that her inclusion in this very visible group makes her a target for low expectations, preconceived ideas about her competence and outdated ideas about where children like her "belong".

Did you know that there are still administrators and teachers who believe that children like Phoenix do not belong in a classroom of her peers? That it is a waste of resources to teach a child like Phoenix  who may never achieve a high school diploma, or go to college or contribute to society in a meaningful way? (Their biases, not mine). Did you know that it is only within our lifetime that children like Phoenix have been entitled to go to school with their peers?

Did you know that in the generations preceding mine, parents who found themselves to have birthed a child like Phoenix were encouraged to abandon their child in an institution because this child was considered uneducable? That is was doctors and experts who recommended this, and that it was families, like mine, who pushed back and made this practice unacceptable? Did you know that there are places in the world where this practice still happens?

Did you know that during WWII, Hitler included people with DS in the group slated for extinction? That for generations, people with DS were regularly denied medical treatment and this is one of the reasons why their life expectancy was only 25 years? Did you know that up until the 1980's some doctors still advocated denying life saving operations to newborns with DS, because their death was preferable to living "a life of misery and suffering"?

Did you know that these ideas still influence perceptions of children and adults with DS today? And that adults with disabilities face the largest barriers to finding employment of any demographic in North America?

Dear Teacher,  I am aware of these things.

I am aware of the prejudices and biases. I know that people look at Phoenix and underestimate her abilities and knowledge. People look at Phoenix and they lower their expectations. I see it all the time. 

In fact I saw it this week with the ECS teacher assigned to our family who spoke to Phoenix in the sing song voice that is normally reserved for infants and toddlers. Who allowed Phoenix to rummage through her bag, sit on her lap and grab her papers on their very first meeting: all behaviours which should be totally unacceptable from a student to their teacher.

Did you know that we have extremely high expectations for Phoenix's behaviour? So when I correct you for allowing her to do things that should be unacceptable, I'm not trying to step on your toes. I'm not trying to be difficult. It's just that your lowered expectations make it harder for us to enforce good boundaries and to teach the good behaviour which will allow her to succeed in school and afterwards at work and in life.

I am not trying to interfere when I ask to speak to her aide about how things in the classroom are going, or when I question what Phoenix is able to do. I need to know that your expectations for what her year looks like are just as high as mine. That you will expect good behaviour and use positive incentives to encourage good choices. I need to know that you see her as a child who is willing and able to learn - if she is given the right supports to do so.

Because I am building this child up to face challenges, meet expectations, and feel confident enough to take chances. I am fostering her loving and accepting nature. I give her hugs, dry her tears of frustration and encourage her to try again. I nurture her spirit.

Dear Teacher, what I want to say is that we both have important jobs to do here and that my actions and thoughts will always be guided by what I feel is in Phoenix's best interests.


You can also view a version of this post on The Mighty.

 

Phoenix reading

I recorded this video last night. It's a simple book that her preschool team sent home last year that I was too lazy neglectful busy to read.  The truth is it got lost in the mounds of paperwork that schools like to send home. That's a whole other post. 

This is her second reading of it. The first attempt was pretty great too. 

This kid blows me away Every. Single. Day. 

One of the worst things we can do to children like Phoenix is to underestimate their abilities. I could have given birth to this child and thought "Well, she's going to be too s/disabled/delayed/slow/limited to accomplish anything, so, why bother.

I didn't. After my initial period of sadness I thought "She'll show them".

And she will. She, and many other children like her, are being raised by parents who believe that their children can achieve. They can learn. They can accomplish. They can be included. They can contribute.

She's five, has Down syndrome and is reading.  

This kid is going places.

The implications of prenatal testing

Because this an incredibly complicated subject, I am going to defer to someone who has written much more in-depth about this than I can. This is my favourite quote:

"Screening and selection say nothing about the inherent worth of people with Down syndrome. They say everything about the elevation of the capacity for economic achievement above other human traits. My children are fascinating, demanding, delightful, present, annoying, dependent, loving, cuddly, different, unpredictable and completely human, just like other children. They are not a mistake, a burden or a reflection of my “personal choice,” but an integral part of society."


https://www.washingtonpost.com/posteverything/wp/2015/06/16/down-syndrome-screening-isnt-about-public-health-its-about-eliminating-a-group-of-people/?postshare=9741445173369034

Photos of kids with DS

Todays post is just some gorgeous photos of kids with DS:

http://www.today.com/parents/photographer-captures-children-down-syndrome-enjoying-lifes-beauty-t48301

Other people and the disability bias

It's been a hard year. I'm not going to deny this.

However.

I don't walk around feeling stressed all the time.

I don't have the feeling that my life is any worse or harder than anyone else's.

I don't feel that I have more on my plate than I can handle.

If you were to ask me how I was feeling or how my life is, I'd probably say that life is good, especially now that I am back at work at a job that I love. 

However, I've had a few conversations lately which have made me think about the pervasive perception that people who have disabilities are burdens. 

The comments are well meaning, but are such that the person acknowledges that I've had a tough year, lists off the stressful events and then says something to the effect of "And you have a child with a disability" or "And you have your mother living with you". Like I have all this chaos that I manage and the tipping point must be that I have a child with a disability and an ageing parent with a disability who makes my life more difficult.  The irony is that there could be nothing further from the truth. 

Both Phoenix and my mother "fill my bucket". I love my mom. She's a great woman who has had an interesting (and more recently difficult) life and whom always lends an interesting perspective to most conversations. She is not intrusive, not a challenge to get along with and is most definitely NOT a burden. She is actual a very welcome support who on a day to day basis adds value to my life and to the lives of my family members.

And Phoenix? Even at 5:48 in the morning, Phoenix is the source of so much joy. She's the brilliant sunrise which sparkles with pink and purple and orange.

Phoenix and my mother are not burdens. But it is upsetting to me that the overwhelming impression of others is that they are burdensome.

I would love to hear from others where this association comes from, because in my case it just isn't true.

Edit: I just came upon this  published on The Mighty.com. It's an excellent example of the type of bias which people so easily vomit out without thinking about the implications (like how this young girl feels about someone talking about her baby so callously.)

DS and abortion

I don't often write about the contentious issue of the selective termination of babies prenatally diagnosed for Down syndrome.

One of the reasons that I don't write about it is because I strongly support a woman's right to determine her own health care values and choices.

I also feel that governments need to stay out of bedrooms, relationships, and out of the business of family planning - except to support peoples autonomous right to direct their own wishes, values and actions.

Yet.

The issue of families purposely terminating wanted pregnancies for Down syndrome is a very divisive one in the community.

Yes, abortion for DS makes a value judgement about the life of a person with DS. The value judgement is that it is better to be dead than to live a life with DS.

This is sad for me, because I think my daughter's life does have value and that she does and will continue to make a difference in the world.

However, if we as a society have acknowledged that women have the right to autonomy over their own bodies in terms of abortion, then we have to accept that just as some women terminate for financial reasons, or emotional reasons or for family planning reasons, that the presence of a major chromosomal difference which can come with a host of complications is a valid reason to terminate a pregnancy.

Yet.

These are wanted babies. These are loved babies. These are babies which women and families think are better off dead than to live a life with a disability like DS.

I always thought I would terminate a pregnancy with DS, but when it came down to it, this is the baby I wanted: with or without DS. And everything I know now about our lives and about Phoenix convinces me that we made the right decision. There is nothing about her having DS that is insurmountable.

Speaking for yourself

I love this video from The Mighty because it focuses on how people with disabilities want to be spoken to and how they want to be referred to. As much as I believe the advocacy I do for my child is worthwhile, it is ME speaking for HER. It's so much more powerful to have people speak for themselves.

http://themighty.com/2015/10/people-with-disabilities-reveal-the-stupidest-questions-theyve-been-asked1/

No one wants a child with a disability

No one wants a child with a disability. I certainly didn't.

What I have discovered as a parent is that as much as we would like to, we don't always get to choose.

I never had the choice of getting Phoenix without DS. The choice was always to have her with DS or not have her at all. So I chose her. Even if I didn't choose Down syndrome, I still chose her. 

"No one wants a child with a disability." A very well meaning person said this to me recently.

But it's an incorrect assumption. Just because you or I wouldn't choose a child with a disability, doesn't make that the case for everyone. There are many people who do choose to have a child with a disability. In fact there are many people who go out of their way to adopt children with disabilities, especially children with DS. 

 The National Down Syndrome Adoption Newtork is an organization in the US whose sole purpose is to match babies and children with DS to adoptive families. At any given time, over 200 families are in the waiting list to adopt. 200!

Many of these families already have a child with DS and have felt in their hearts the wanting for another child with DS. 

I can't say for certain their motivation for adopting, but certainly the love and value attached to their child with DS must be a huge factor in wanting another child with this syndrome. 

I would not choose to adopt a child with DS (or any other child for that matter). I feel that my family is perfect the way it is. But I am so, so grateful that there are families who listen to their hearts and choose to expand their family through adoption and provide loving homes for children who need them. 

 

Phoenix and memory or "The Day Phoenix shook Wren out of her clothes"

Phoenix has a significant language delay for a child her age. While Phoenix can talk along with and repeat the phrases of Frozen, tell us about her wants and needs and describe what is happening around her, her ability to have a conversation is quite weak. We can't ask her what she did that day in school. Well, we can ask, but she doesn't have the skills yet o tell us .

So it can be difficult to ascertain what Phoenix remembers, how far back her memories go back, and how much information is retained.

One thing I do know is that Phoenix has a phenomenal memory for language and sight words. She knows all 200 Dolche sight words as well as about 200 more from her daily life. I use sets of sight words as well as words I make myself on foam sheets. The idea originally came from using foam letter and numbers in the bath. Phoenix loved them, and I tried to find bathtub sight words on the internet to no avail. So I decided to make them myself, and it was a huge it.

Another more annoying interesting area of memory is of things that used to be hers. Clothes that have been packed away for 2 years and finally brought back out to hand down to her sisters elicit fits of indignation.

How dare Ash and Wren wear her clothes.

Sadly, we can't even use the "look, these clothes don't fit you anymore" logic, because Phoenix can actually squeeze into them. Her waist size hasn't changed in years, she just keeps on growing up.

An incident a few weeks ago illustrates this nicely. Mike was taking a bathroom break and had left Phoenix and her sisters in the safety of the family room. Mike hears Phoenix crying, Wren shrieking
and comes out to find Phoenix holding her sister by the legs, attempting to shake her out of her jeans.
Jeans which used to be Phoenix's and which Phoenix wasndemanding back. The top is also objectionable having once  been hers too. As you see in the below picture, Wren managed to keep her top but lose the jeans.

They all survived, non the worse for wear, so to speak. But oh boy, does Phoenix's sense of entitlement and justice to rival my own.

The same seems to go for Phoenix's toys. Of course we let Ash and Wren take a turn with most toys except a precious few of the favorites. It's absolutely adorable to see them have their turn then bring the toy to their big sister to have back. "Here Feesix" they both say. She fiercely guards and protects her things and the little girls are finally learning that the easiest thing to do is to just give Phoenix what she wants.

Another interesting memory for Phoenix is seeing a cat sitting by the canal by our house. I'll bet that Phoenix was only 3 when she saw that cat, yet from time to time she still walks by the canal and asks "Where's the cat?"

One thing that stands out in the research on kids with DS is that they are strong visual learners and weak verbal learners. This is why visual schedules, flash cards, phonics videos and iPad apps are great for her learning and are primarily responsible for her wide range of knowledge.

I continue to look forward to seeing how much of the regular curriculum that Phoenix is able to access both with her aide and with my enrichment. 

What is Disability Bias (Ableism)

Disability bias (or Ablesim) is the belief that being able-bodied and able-minded is the best way to be in the world.

It's a lot like the concept of eurocentrism. That the Europeans viewed the Aboriginal culture and their way of being in the world by the standards of their own cultural experience and found it lacking, barbaric, and culturally inferior etc.

Ableism is seen in many of our attitudes, specifically in the value we place on others and the type of people who are considered "burdens" to their family and to society at large.

There is a pervasive belief that people like Phoenix are less worthy of the rights and responsibilities which are bestowed upon people who do not have disabilities.

 

It was not that long ago that when a child with DS was born that their parents were counseled to give up their child and place them in an institution. Parents were also counselled to withhold life saving treatment to their babies with DS.

 

Please consider the following case:

 

"In 1982, a baby boy was born in Indiana with Down Syndrome and a

tracheoesophageal fistula. The upper part of the newborn‟s esophagus was not

connected to the lower part. Surgery was both possible and likely to succeed. Without it,

the baby would die.

The mother‟s obstetrician had a particularly narrow view of Down Syndrome. He told the

parents that their baby would not have any quality of life, even if the surgery were

successful. Based on this advice, the baby‟s parents “agreed not to authorize surgery,

food, or water for the child.” Nurses at the hospital initiated legal proceedings to override

the parents‟ decision. However, the Indiana Supreme Court ruled that the parents had

the right to follow the obstetrician‟s recommendation. “Baby Doe” died when he was six

days old, before the United States Supreme Court could hear an appeal."

 

Based on the bias that this doctor demonstrated, this family felt that their baby was better off dead. Sad, sad, sad.

 

Doctors are also betraying their personal bias when delivering a DS diagnosis. "In a 2013 poll published in an article by Brianna Nelson-Goff and colleagues in the Journal of Intellectual and Developmental Disabilities called "Receiving the initial Down syndrome diagnosis: a comparison of prenatal and postnatal parent group experiences,"[iv] 1 in 4 women report that their medical provider was "insistent" they terminate their pregnancy, and their negative experiences with a medical provider outweighed positive ones 2.5 to 1."

 

I have personally read accounts from mothers who have received their DS diagnosis and offered a termination within the same breath. "I'm sorry to tell you that your baby has DS. When would you like to schedule the termination?"

 

I believe that the only logical conclusion for these type of biases is how disability and Down syndrome is treated and thought of in our society.

If it wasn't viewed as such a burden, if people with disabilities weren't pitied and looked down upon, I don't believe these sentiments would exist.

If there was one thing I would ask of each person who reads this, it's to examine their own beliefs around disability.

One of the reasons I write so passionately about Phoenix and other kids like her, is to promote the concept that she is a fully functioning member of society (as much as a 5 year old can be anyway). She is very much like other kids her age. She has thoughts and emotions. Her feelings get hurt. She is intuitive to the attitudes and emotions of people around her. She is obsessed with Frozen and likes to dress up like a princess. She's a normal kid: who learns more slowly, who speaks in shorter sentences, who has difficulty articulating and can't run or jump. She is so many things beyond her extra chromosome, yet often the first impression that someone has of her is Down syndrome, and whatever biases and beliefs that person has about Down syndrome.

These biases limit her. They limit all of us. Judgement is the killer of compassion and understanding. So please, understand that Phoenix will get there. She is capable. She is competent. Just like you or me.

Phoenix and sensory needs

If you've followed us for a while, you may have noticed that Phoenix is often photographed with blocks in her hands or by her mouth. That's because Phoenix has a variety of sensory needs which we try to help her meet. One of the needs that she has shown us is texture seeking with her tongue. 

As a small child she used to lick her board books to meet that need - however it destroyed a large number of the books, so I tried other items for her to lick that would meet this need without being destructive. I tried a variety of chewy necklaces and even some formal chewlery, but nothing that would hold her attention for long. 

One day I looked at the wooden blocks we had and noticed that there was a wide variety of etching and prints on the sides. I handed that to her instead and she liked it. She clearly finds it very relaxing to do and she often pairs the use of her block with watching videos on her iPad. In fact, "iPad/block" is a single phrase for her and she knows to go find one when she wants that kind of sensory feedback. 

And, the books are no longer destroyed by Phoenix: they are destroyed by her little sisters ripping pages off  <sigh>.

Another sensory need we have found is deep pressure on her arms, legs or trunk. Phoenix likes to sit behind me or beside me on the couch and push her legs into me, producing deep pressure. She also really likes deep pressure squeezing on her torso in the form us very tight hugs. When I do this she laughs, smiles and tells me it's amazing, so I know I am doing it right.

Jen recently found a theraband on a swap and buy group for $5 and we've introduced it to Phoenix. We wrap it tightly around her torso and tie it off in a knot. Phoenix will happily wear it for hours.

What I like about the time we are living in is the growing awareness of how sensory integration affects us all. I can try these activities and therapies with Phoenix and no one thinks that it is odd or out of the ordinary. Kids can wear their chewlery to school and are not considered weird.

Many people have sensory needs, even people who are so called "typical". The more we meet our sensory needs, the better we are able to function and to put our bodies into homeostasis. That's one of the reasons I work with Phoenix to meet her sensory needs. I want her to understand how her body is "supposed" to feel, and to find ways which work for her, and for us, to be able to moderate her own body independently. 

Down syndrome myths

Today's post is a Down syndrome myth.

Myth: Down syndrome causes the tongue to be larger than average.

Reality: the tongue size of people with DS is the same as everyone else. However, in actually it is the palate which is smaller and low muscle tone means they can't always keep their tongue in their mouths easily.

I used to worry about Phoenix sticking her tongue out as a baby because I didn't want her to have that stereotypical "look" of DS. It turns out, babies just like like to stick their tongues out, as I found out after Phoenix's sisters came along.

Phoenix doesn't have any issues keeping her tongue in her mouth, but the low muscle tone in her tongue and mouth does affect her in a fairly significant way. Low tone is the cause of speech delay and articulation issues as well as eating and chewing concerns. You can read more about her picky eating HERE

The "why your kid is crappy" list

This is an edited post from 2012, but it has a lot of information about DS to share for the awareness month. 

When I think about "the list" of things that are associated with DS I can't help but think back to Phoenix's second day of life when The Geneticist sat Husband and I down to explain about Down syndrome. He delivered what I now think of as the "why your kid is crappy" list. Which is pretty much how I felt after the Geneticist was done with his run down of what we could "expect" and how Phoenix was different from other kids.

Before I launch into "the list", I'd like to talk about the problem with delivering news about my child's condition this way: It didn't actually tell me anything specific about my child.  

Giving new parents a laundry list of how our kids are different, all the medical conditions associated with DS, and a list of everything that could go wrong is totally pointless. For a really good discussion of why talks like these are problematic, read here and download the pdf. Don't let the fact that this is a medical journal deter you. The author is a journalist with a child with DS, and the article is very 'readable' as medical journals go.

Here's what delivering a list like this didn't tell me. It didn't tell me that at 11 months my daughter would be crawling, or at a year would be pulling to stand, or that at 22 months she would be walking. 

It didn't tell me that at 2 and a half she would know her alphabet, numbers, shapes and a handful of sight words.

 It didn't tell me that she would have a heartbreaking smile and an engaging personality. 

It didn't tell me that she would hate the feel of the wind in her face or to love snuggling after her afternoon nap. 

It didn't tell me that she would easily remember the name of every child in her class and that over the past 2 years that Phoenix would learn to sight read a list of over 400 words.


In fact, it didn't tell me anything helpful at all about my daughter. 

It certainly didn't prepare me for the fact that at a year old Phoenix might develop Alopecia and loose all her hair. Because even with all of Science's correlations and associations, it can't predict how extra genetic material is going to impact my child.

The presence of the extra chromosome causes a variety of differences in each individual - which is why it is referred to as a syndrome. Some of the physical diiferences on the "list" are:

Low muscle tone, extra skin at the nape of the neck, a flattened bridge of the nose, a single crease in the palm of the hand (simian crease), small ears,  small mouth, upward slanting eyes with an extra fold of skin near the nose, wide, short hands with short fingers, white spots on the colored part of the eye (Brushfield spots). Also, most children with Down syndrome are physically smaller than you would expect based upon their parents height.

So we are given this list, and the overall feeling I have is negativity. As if my daughter, because she has some, or all, of these characteristics, is flawed. Unacceptable. Ugly. 

Because otherwise, why would you bother mentioning these things at all?

Here's the thing. Yes, Phoenix has small ears, and a small nose, and a small, bald head. Yes, she has a different crease on her hand, and stubby fingers. Yes, she has an extra fold of skin next to her nose which make her eyes appear wider. Yes, she is smaller than most other kids her age. 

But when I look at her, I don't see flawed. I don't see ugly. I see a child who is beautiful. Who has alabaster skin. Who has a perfectly formed head and lovely almond-shaped eyes. 

I see beauty. 

Not ugly.

Phoenix is not a list of attributes. She's a human being. 

Unlike, perhaps, the Geneticist.

What life is like with a child with DS: photos

 

We dress up like Elsa

 

We watch Frozen as Elsa

 

 

We go on walks with coffee

 

 

We play in the mud

 

We take selfies on the back dack

 

 

We watch the penguins at the zoo

 

We go for walks in the sun

 

We pull our sisters in the wagon

We colour at the table

 

We dance in the livingroom

 

We take selfies for mom

Ode to Jen

These photos are my Ode to Jen. She is our friend and aide and is the part of our family which I didn't know I was missing until I found her.