Parents, have you ever had a day where your frustration level is high for no apparent reason, your patience level is extremely low and you are just exhausted after a seven-hour sleep? Well that’s been my day today, so I’ve searched for a glass of wine and am currently soaking my feet in a foot spa. Oh it’s Ben by the way and yes, I love foot spas.

Today I want to touch on “Society and its views”. It’s an interesting topic but please keep in mind that everything I write is my opinion of what I have seen and been exposed to. Other journeys of parents may be different and would have completely different views and opinions.

Society has come leaps and bounds forward with, not just down syndrome, but all people with a disability.

From, approximately, the 1960s onward, the term “Down syndrome” became the appropriate term to use for someone with Trisomy 21. Before this, and it breaks my heart to read, the common term was monogenoid or Mongolian idiot. It’s heartbreaking! Just removing this term as “appropriate language” was a step in the right direction.

Unfortunately, the colloquial terms now are “retard” and “spastic”, two words that make my blood boil. There are people out there who use these terms in everyday language, without thinking about what they are saying or what it means. It’s just another word to them.

The sad fact is, during Hope’s life, she will be called one of those terms or even worse. I beg anyone who uses this term, I can’t stop you from using it, but never let Hope hear it. Just think, If she hears it being used by someone she loves, how would it make her feel?

This isn’t just used in the general population, it gets worse. On the 7^th of February 2020, Marc Fenell was on the project and said to someone who he thought was foolish, “are you missing a chromosome?”. This is a journalist, on a popular tv news program. Well tap tap tap I go and I wrote to him:

Marc did make a formal apology on air, which I thought was great but for someone with his social influence to be able to say that, no wonder change is slow going.

Another example of children with Down syndrome not being treated fair was at Hope’s yearly audiology test. Heidi took Hope to the appointment and was told “Acceptable, nothing of concern, we will send the report”. We felt a wave of relief, something we didn’t need to stress about. The report came, I glanced at the complicated jargon and graphs and filed It away. It wasn’t until I emailed it to our speech therapist was when the alarm bells went off. We got a referral to see an ENT specialist and it was found that there was fluid in both ears and will need surgery. Hope could hear noise but not sounds. Hope’s hearing was muffled and could only hear certain sounds. When you said the word “HOPE” she would hear “_O_ _”. Yet, because she could hear “noise” her results were acceptable.

One final comment was made to me, and I will never forget it, was during the pregnancy and the complications were occurring (See Heidi’s amazing blogs for that story) this person, who I won’t name, said the words “I guess it’s natural selection”.

If you had to double-take at that comment, imagine me, standing in front of them, mouth wide open, trying not to scream! I just walked away and cried.

On the complete opposite side of things, the outpour of love Hope has from everyone she meets is so heartwarming and fills me with hope that she is changing the world. Slowly, but Hope is changing this world.

Since we announced that Hope had Down Syndrome at the baby shower, warm words of encouragement and praise have filled us daily. You are our safety net, your words mean more to us than you know. These words, don’t come from a place of pity or sadness, but a place of love that you have for our daughter Hope. We have heard comments from people that they learning from Hope, they are gaining a better, fuller understanding of T21. Society is changing, we see it from everyone who is a part of Hope’s life. If you are reading this then you are changing as well, maybe on the smallest level, but that’s all we need.

Children and adults with down syndrome are models, directors, actors and artists. Life is now limitless for everyone! It’s amazing to see this change occurring in real time.

Before I finish this blog, if you are someone who has said “They are so happy all the time” please come around dinner time and just watch the food being thrown across the room because she is grumpy or the tantrums we get when she doesn’t want to brush her teeth or the screaming match we have when she doesn’t want to shower. Please come around, we would love a babysitter to just catch a few breaths, we will pay!

The way society sees people with disabilities is changing, it is evolving slowly into a more accepting place to live. Hope is changing the world and we are so excited to see where it leads.

Heidi will be back next week but when I return, I will be touching on the topic of “Creating a new path and the future”.

“A negative society will affect my life, more than Down Syndrome will”

Love you Hope.