The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Ten Years In

Thursday, 31 October 2013

I've been doing this for ten years now.

I've been a parent to a child who has Down syndrome for ten years. A decade's worth of experience, yet I feel like I have no great wisdom or advice to give.

I experienced the roller-coaster of emotions upon realizing that my first born child has Down syndrome: through being in a fog, to guarding myself, to depression, to acceptance, to moving forward. Yet there is no way I could write a memoir.

There is nothing in my experience that would be overcoming anything and coming out the other side unscathed.

Even though everyone has their own story, there is nothing in my story of having a child with Down syndrome that would stand out.

I had no major turning point, but rather a slow day-by-day grasp of finding my footing of being a new mother and a mother to a child with a diagnosis.

I have one vivid memory of an 'a-ha' moment. Kayla was a newborn and I can't remember if we had our 2 week visit with the pediatrician at that point or not. I just remember trying to find something, anything, on Down syndrome. Something that would give me a glimpse into what this meant and what to expect.

I was in my room and picked up the Mayo Clinic Complete Book of Pregnancy and Baby's First Year that was sitting on my dresser. I found the section on special needs and Down syndrome. I can't remember a thing that was in the book about Down syndrome, but I remember it was the first time I came across Emily Perl Kingsley's "Welcome To Holland."

I know people either love or hate this poem. But for me, in that moment, it was what I needed to read. Maybe it was because I found it on my own and I didn't have it thrust in my face from so many people right after Kayla was born.

By the end of the poem I was crying (I'm sure postpartum hormonal fluctuations played a role in that, too).

Yes, when I read the line, "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." it spoke to me. It opened my eyes that I couldn't sit around and be depressed because I would miss out on the experience of being a new mom; the experience of this beautiful, adorable baby in front of me. So it did help give me perspective.

But here I sit after 10 years and I've heard over and over the usual cliches about being a parent to a child with Down syndrome and find that I can't identify with most of them.

I don't feel that Kayla was sent here to teach me a lesson. There is nothing that Kayla does with the intent and purpose of teaching me, or the world a lesson. She is simply a child, living her life. She does not exist so the world can learn from her.

She has not taught me to be more patient. Although I should be more patient, it is a 'lesson' that I've just resigned myself to not getting. I do get irritated and impatient with her; just as I do with Lucas.
 
I don't feel that having a child with Down syndrome has changed me as a person. I am still the same person I was before I gave birth to Kayla. The only thing that has changed is that I'm more aware of Down syndrome whereas I had no connection with it before her birth. Giving birth to her did not cause some seismic shift in my personality, in the core of my being. I am who I am and that didn't change just because my daughter was born with Down syndrome, anymore than it changed when I gave birth to my son.

I don't feel that having a child with Down syndrome has made me a better person or parent. I fail at being a parent every single day.

I can say that I can't imagine my life without Kayla, but it has nothing to do with Down syndrome. It has to do with the fact that she's my daughter and once someone important is in your life, of course you can't imagine life without that person in it. I can't imagine my life without my husband, my siblings, my parents, my son. It's not Down syndrome that makes me say I can't imagine life without Kayla in it.

She's a blessing in my life, but not because of having Down syndrome. Again, she's a blessing simply because she's my child, she was a very much wanted first-born child. She's a blessing because she's my daughter and I always wanted a daughter.

She hasn't taught me the meaning of unconditional love because she has Down syndrome. I would love her unconditionally if she was born without Down syndrome and I know she, and Lucas, love me unconditionally because I am their mother. Down syndrome doesn't play a part in understanding what unconditional love is; it's unconditional because we are a family.

My journey is not extraordinary. It's a journey like hundreds and thousands of parents, all doing the best we can with what we have and what we know.

There is nothing special and there are no great life lessons to be learned from my journey.

So, no memoir from me (there are some great ones out there though!). The single piece of advice I could give a new parent of a child with Down syndrome can be summed up simply and it is live your life. Live your life with your baby the way you planned to before you received that diagnosis.

Having a child with Down syndrome does change some things (school decisions, employment, independent living, planning for the future in a more precise way) but it doesn't change everything.

You have a baby with Down syndrome, and just like that old TV show ... Life goes on.

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Politely Cutting the Line

Wednesday, 30 October 2013

About a month and a half after school started we had a special-review IEP meeting. We discussed how the accommodations and modifications were working out, went over her progress thus far, and in general see if there was anything else the school team could be doing to help make sure Kayla would have a successful year.

During this meeting her teacher told us how all the kids really like Kayla and she gets along with everyone.

She said the kids all like Kayla so much, that when she goes up to sharpen her pencil she cuts in line and they let her. They don't say anything to her, but she knows if another classmate cut in line the students wouldn't let it happen.

Her teacher has been making sure it doesn't happen either and reminds Kayla she has to go to the end of the line.

I talked with Kayla about this when I got home.

Me, "Kayla when you go sharpen your pencil in class are the other kids sometimes in line already?"
Kayla, "Yes."
Me, "And you just go to the front of the line?"
Kayla, "Yes, I sharpen my pencil."
Me, "But Kayla you're not supposed to cut in front of the line. You need to wait at the end of the line."
Kayla, "I say excuse me!"

Well there you go. Maybe the other kids aren't being polite when they cut in line.


 

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Not Suffering From Down Syndrome

Tuesday, 29 October 2013

There was a discussion today on FB over a comment saying that people with Down syndrome suffer.

The reference to suffering from Down syndrome is seen in articles (the last 2 paragraphs) and websites describing the condition.

Here is the thing though: Down syndrome is not a disease. It is a syndrome. And this syndrome is a set of symptoms and/or characteristics indicating the existence of a condition.

Down syndrome is an extra chromosome. That extra chromosome does not cause the people who have it to experience pain from the extra chromosome. Pain would equal suffering. You do not suffer from the extra chromosome.

Yes, there are a list of potential health problems that can be associated with Down syndrome, but are not unique to Down syndrome; they can also be found in the general population.

Individuals with Down syndrome may be at a higher risk for certain health conditions, but not all people with Down syndrome will have every potential health condition listed. There are some people with Down syndrome who don't have any other health problems at all.

Kayla is relatively healthy. She doesn't have too many of the associated health conditions.
- She had a small ASD that closed on its own and a small PDA that was closed with a cardiac catheter
- She's had 4 sets of PE tubes in her ears
- She has Celiac Disease
- She has some vision issues and wears glasses
- She was recently diagnosed with mild/moderate sleep apnea and will probably need her tonsils taken out as a first plan of action

Who is to know if Kayla would have had any of those issues if she didn't have Down syndrome? Joe has had his tonsils and adenoids out and he still snores!

Dictionary.com defines suffering as: to undergo or feel pain or distress

Even with that small list of health issues; Kayla still wasn't/isn't suffering from any of those. She might have been suffering from a headache from eye strain before getting glasses, but she never expressed it if she was.

Many adults with Down syndrome do have dementia and/or Alzheimer's disease when they get older. It is more correct to then say that they are suffering from Alzheimer's disease (although it could be simply stated as saying they have Alzheimer's instead of suffering from). The 'suffering' would be referring to the condition/disease and not Down syndrome. 

You don't suffer from Down syndrome in and of itself. But some of the specific medical conditions that someone might also be diagnosed with could cause pain, and then suffering, if not treated.

Interesting that Dictionary.com also says, "It is better to avoid using the words suffer and sufferer in relation to chronic illness or disability. They may be considered demeaning and disempowering. Suitable alternative are have , experience , be diagnosed with."

Exactly. Kayla has Down syndrome, she does not suffer from it. 


 

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21 Life Experiences

Monday, 28 October 2013

21 life experiences that Kayla has had. Some of them are big life experiences (becoming a sister! flying to another country!) and some of them are little things (going sledding after a blizzard!) but they all add up to enjoying life, living life, and experiencing life.

1. Putting her feet in the ocean for the first time.
2. Flying to Denmark. Twice.
3. Taking a ferry to Sweden.
4. Enjoying the aftermath of a blizzard.
5. Going to an NFL game.
6. Having fun at the Boston Children's Museum.
7. Hiking a mountain.
8. Throwing out the first pitch at a Charleston RiverDogs game.
9. Going to Disney. And Sea World. And Sesame Place.
10. States Kayla's been to, or through: NM, AZ, TX, OK, WI, MO, IL, IN, OH, WV, VA, MD, DE, NJ, NY, PA, CT, MA, NC, SC, GA, FL.
11. Roller skating and ice skating.
12. Sledding at White Sands National Park.
13. Visiting a pumpkin patch and jumping in to a pile of hay.
14. Spending a weekend at Victory Junction camp.
15. Mastering the monkey bars.
16. Climbing a tree.
17. Participating in a dance recital.
18. Tea Party/Slumber party birthday.
19. Becoming a big sister. 
20. Giving yourself an oatmeal facial.
21. First job experience as a hostess at a restaurant.

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