He said what!?

One of the hardest things about having a child with Down syndrome is un-talked about desire to remove individuals with Down syndrome from society. This post is inspired by a politician running for office in the UK. In his manifesto, he states he thinks there should be mandatory abortion for all fetus’s with Down syndrome, cerebral palsy and other genetic disabilities that can be identified in utero. Statements like this are horrifying for two reasons.

There is major misinformation out there about prenatal screening and diagnostic procedures for Down syndrome. First of all screenings are the ONLY tests that do not carry with them spontaneous abortion as a result of the test.  The accuracy of these screenings range from 80 to 99.8% and can result in both false positives and false negatives.  

There is no test that can 100% predict the presence or absence of Down syndrome. Amniocenteses and chorionic villus sampling bring with them a minimum risk of 1% chance of spontaneous abortion. So, since I’m an engineer we’re going to do a little math. If everyone was required to have prenatal diagnosis and approximate number of babies born worldwide is 130 Million, 1% of this number is 1.3 Million. So, just due to being required to have a diagnostic test would result in the death of 1.3 Million babies! In addition, 1 in 690 babies in the US are born with down syndrome (note the number would be even higher if they were not aborted upon a ‘positive’ diagnosis). That would be another 190 thousand babies who would not be born because they had down syndrome. So, we’d be killing 1.3 Million healthy babies, to eliminate another .2 Million people.

The thing that bothers me about this whole argument is the common view that people with disabilities are less human, less worthy than ‘typical’ people. While not everyone says it as bluntly as Geoffrey Clark does, the laws, actions of individuals say it very clearly, individuals with disability are not worthy of the same rights in life or right to life as a ‘typical’ human.

I am regularly infuriated by the social acceptance of these polices. Did you know an individual with a disability in the US can only have $2000 to their name or they lose their health insurance and SSI. The group as an unemployment rate of 75% in the US. They can be paid significantly less than minimum wage, like, $1 an hour! The sad thing is their work is considered lower than other peoples work. However, I think we can all think of jobs of where we work, that work output would be significantly improved if the person doing them was very good at doing 3 or 4 things very well. Instead of seeing this as an asset, employers look at this as a handicap, and regularly employ ‘typical’ individuals, who when asked to do a simple repetitive task, get distracted by Facebook, gossip, etc, do the job inefficiently, poorly and constantly trying to move beyond the position. To me it makes good business sense to employee individuals with the correct skill sets, regardless of a perceived ‘disability’.

Finally, a note to parents of typical children of a couple things NOT to say to someone who has a child with a disability. I’ve included some cliff notes on what you’re actually saying to the parent. The sad thing is, I’ve actually had people say this stuff to me. Note it’s not a compliment, they’re insults.

1)      Wow, I would have not been able to make the same decision you did, if I knew my child had Down syndrome.

Cliff Note: If your child was my child I would have killed them, literally. People with disabilities shouldn’t live.

2)      I don’t know if I could handle having a child with a disability.

Cliff Note: Your life is insanely difficult, and miserable.

Thanksgiving

A year that includes your children coming home from the NICU, and your neighbors house blowing up 5 days before you close your sale (and still ended up closing the deal!) results in numerous reasons to be thankful. I won't leave you with a list of our many blessings, I'll only pick one, one thing I've never knew existed before this year.

I am very thankful to be part of the community of families that have disabled children. I'm thankful for the warm smiles from strangers that I pass. Smiles that say, it's going to be okay, you can do it! I'm thankful for conversations with strangers, where there is a fundamental common bond. I'm grateful when people make a big fuss over Sam and ignore Coraline (who is t he one who usually gets all the attention).

This year the invisible has become visible, I am grateful for new friends I have made, and people I no longer over look. Happy Thanksgiving everyone!

Mommy Milestone

The journey of parenthood is full of many milestones, just like childhood development. My husband and I regularly joke that we're leveling up and often celebrate when we feel we have acquired ‘advanced’ parenting skills! For example, when we first started changing diapers we were sooooo slow, we’d make sure everything was done perfect, if you told me a year later I'd know how to diaper a baby that was crawling away from me, I would have looked at you like a deer in headlights, unable to comprehend how that is even possible.

Well, last week I hit another parent milestone, I was on Facebook looking at some beautiful pictures of my friends son, and I thought to myself, he’s really a beautiful baby, but the poor mom, she just isn't lucky enough to a have a son with Down syndrome. It was the first time EVER that I had seen myself as truly fortunate to be on this journey. It was such a freeing moment, no jealousy, no self-pity...

I will not declare that this has been an easy battle in my head, nor that those feelings are gone for good. We all have our good days and bad days and see the grass greener on the other side. We live society our culture values three things, beauty, intelligence and money.

As parents we get so caught up in babies milestones, we are a culture that obsesses about 'success'. I dare say we worship success. 

Society has taught many of us out there in highly technical fields, our worth to society is our intellect.  I have to admit that I associated an individual’s worth to their intelligence and since becoming a mother of a son with Down syndrome I have learned the error of my former thinking.

My challenge to many of you (and mostly myself!) is to be aware of these milestones, but not to obsess over them, or compare your child to other kids.  Enjoy children for the individuals that they are, pay attention to where they excel, encourage them to work in areas they need to improve. Take joy in every milestone, don’t waste your energy worrying about those milestones yet met. Being ‘slow’ at something isn’t a big deal, it just makes you human. Now… I’ll let you know when Mommy reaches this milestone!

Out of Beta

On the urging of some friends, and a deep desire to educate and advocate for my son Samuel, who has Trisomy-21 (aka Down syndrome) I am starting this blog journey. The past 12 months have been a year of firsts, many of which I would not like to repeat and many wonderful new adventures.

I was inspired to name this blog Profundity, after consistently being told individuals with Downs syndrome, are 'just such happy people.' While everyone meant well, this was not a comforting thought to this new parent, I didn't want my child to just simply be happy. I want them to be a complex individual with a full range of emotion, to be able to experience life in all its fullness, but also in all its struggles. There is something glorious and innately human about struggling, persevering, and accomplishing. 

What I have come to realize is societies view of individual’s with Downs syndrome was so one-dimensional, not to be judgmental, I was there just a short year ago. The mission of this blog is to capture the adventures of the Ashton family and show the world that life with Down syndrome, while happy, is full and profound.