Parenting is hard.

Parenting is hard. I think it's even hard for parents of "typical" kids, though I wouldn't exactly know. I know we're all exhausted, that's a given, right? Yet because of the idiosyncrasies of my children and the unique challenges they face, it's difficult to give up their care, even to the most well intentioned village, if only for an evening away. We're ever vigilant, always on guard, and yes, definitely over protective.

I also imagine that all parents worry, mine still do and I'm grown with children of my own! But maybe parents of typical kids have a little less to worry about. I know there are commonalities among what parents worry about, I just feel like parents of kids with disabilities have a greater number of those worries at any one time. I'd start a list, but I'd like to maintain some semblance of denial.

I can imagine that raising kids is like a roller coaster ride for most parents. There are enough highs and lows to go around, though I think that parents of "special" kids might be experience higher highs and lower lows. Milestones are not taken for granted or expected, instead they are hoped for and celebrated. We flinch when parents joke about the "agony" of having a mobile toddler to chase around. When our kids can stack 3 blocks we jump up and down, much like a parent might do when their child learns to ride a bike. And a milestone as simple as shoe tying may be something we never witness. I'm actually still waiting for that one, and my boys are 13 and 7. Yes, in the grand scheme of things, not such a big deal, but an example of the little things we don't get to take for granted.

The lows on our roller coaster are followed by loop-d-loops, aka the grief cycle. We grieve for what our kids are not or will not be able to do. We grieve for the future we imagined, then turn to the task of creating a new one. We learn quickly that there really are no guarantees, for reals, no joke, seriously. And though coming to terms with that makes life "easier," we're still sometimes resentful about it.

I'm not sure that I'm doing a good job of articulating what it is that I'm trying to say. The emotions I'm experiencing at this moment come and go, in various degrees and for various reasons. Tonight it's because I, along with a few dozen parents, sat through a 3 hour meeting with the special education directors and superintendent of our school district. The purpose of the meeting was to address parent concerns regarding reorganization of special education services due to budget cuts. 

What this boils down to for me, right now, is that I am faced with making a decision of where Parker will spend first grade. Will he continue in his cluster class? Or will he go to his neighborhood school? We also had to make this decision last year. The question isn't as simple as it may seem, there are several factors to consider. I know it's just first grade, but it might as well be college, that's how the weight of it feels to me. I'm afraid to choose because I don't want to make the wrong choice, if that makes any sense. And it's only in hindsight that I will know if it was the right choice, or more accurately, the better choice. 

So yes, to wrap things up before my venting turns into droning, I believe that my experience might not be too different from what it is now if I was parenting typical kids. And though most parents of typical kids probably don't have over a dozen doctors, therapists, clinics, etc... listed in their contacts, I do know one thing we definitely have in common, love for our children.   

Two Weeks Notice!

Race for the Cure is TWO WEEKS from today! I'm very excited to be participating as a runner, team member and fundraiser! My team is in the Top 10 for fundraising! BUT we haven't reached our goal, YET! Please, please, please contribute or join our team ASAP!
If you register by MAY 6 then your bib and t-shirt are mailed to you! Woohoo! You can actually contribute money up until May 31 for it to count as Race for the Cure funds, but I will stop bugging people about it after the race.
Once again, here is the link to my team page: http://slc.info-komen.org/site/TR/RacefortheCure/SLC_SaltLakeCityAffiliate?team_id=204249&pg=team&fr_id=2479

You can donate to the team in general, or to any of the individual teammates listed. Porter and Parker each have a goal of $5.
The Race for the Cure will be my FIFTH race since turning forty, and it celebrates 5 years of being a survivor! We are also dedicating this race to my dear friend Lee as she starts her fight against cancer!

On a slightly different note, I did my third race today, Color Me Rad. It was a family and friends effort and way too much fun! Parker was able to volunteer through the Utah Down Syndrome Foundation, and Dad and Porter were his volunteer buddies. Fun was had by all!

Another "R" Word

Here's another "R" word I don't particularly care to hear, RETARDED. Unfortunately it's a word I hear daily and often multiple times in a day. Mind you, I do work with teenagers, but they are not the only offenders.
This isn't a word I came to dislike as a result of having Parker, and I don't even doubt that I have also used this word many times in the past.
Pre-Parker, I would gently admonish my students by telling them that "retarded" people, people who could not help being born with a mental disability or people who were impacted through an accident, don't really have much of a choice about their mental abilities. What they really meant was "stupid" or "dumb." I know, I know, not much better and still name calling, but stupid can be attributed to any person or group while retarded conjures up images of a specific group of people who have intellectual and physical disabilities.
Post-Parker, I still gently admonish and then throw in that my own son has an intellectual disability and that I personally take offense to the use of that word. Most often I get a wide-eyed look of shock followed by an apology which often times included something like, "Well, I didn't mean him."
That's why I love this little PSA from Lauren Potter who plays Becky on GLEE. How many other words do people use with the caveat of "I didn't mean 'him,' or 'her,' or 'them.'" There have been occasions during my life in which people have disparaged Asians during their conversations with me. When I point this out, they say, "I didn't mean you." Is that because I'm only half? Or because they just see me as American? Then who did they mean? My mother?
Name calling with words that are used as labels for specific groups of people is hurtful, insensitive, and off-putting. I would include "gay" in this category as well as "girl." Using "gay" as an interchangeable adjective for "stupid" is, well, stupid. They are not interchangeable and insinuate that being gay is a bad thing. I also object to the insinuation that being a girl is a bad thing with comments such as, "Don't scream like a girl," "You're acting like a girl," "You throw like a girl."
So there you have it, my Sunday Soapbox.

September 20, 2010 "Buddy Walk"

Parker’s Buddy Walk was yesterday. On Monday, I found out that this year there would also be a 5K, so Lexi and I made a last minute decision and signed up. We thought it would be good practice, and a good experience to learn from before we ran our 10K in October. It was not the experience we thought we’d have, but still fun. We did finish in the top 10 (out of a dozen or so people) and we didn’t run a full 5K (the route was about ½ a mile short). But I did run around a 12 minute mile, which surprised me. I knew tand hat I wanted to step it up for the race, but wasn’t quite sure how to keep myself running faster than my normal very slow rate (15 minute mile), and not too fast (interval running) as to burn out. The answer was Cadence, an app for my iTouch. I am not a techie person, but this app is amazing. It took all of the music on my iTouch and arranged it in order by bpm (beats per minute). So I just set it at the bpm I thought would work, and off I went, jogging to the cadence of songs that kept me going and going and going. We finished the race, Lexi before me, and were happy with our efforts. We’re looking forward to our next race!The walk was fun, as always. Seeing so many cute kids, families having fun, and all of the support was great. Parker especially liked the inflatable slide and obstacle course. We could only get him away from those when he saw the train “zoom” by. It was great to see the performance of Rachel Coleman from Signing Time. Parker was following along in his own way, throwing up his arms, waving his hands, and singing. The walk was short and something Parker wasn’t too interested in, but we made him do it anyway. He survived, but was pretty much done after that. It was a beautiful but hot day, he had been going non-stop for a few hours, and after we ate, he was a crabby and stubborn little guy. Clint took the boys home and Lexi and I stayed for the raffle. Parker did get his name drawn and we got a big bowl full of movie treats. All in all it was a great day. Next year, we’re going to organize a team and do some major fundraising to celebrate Parker turning five. Stay tuned!

October 29, 2009 "Tiny Tot"

I haven’t written much specifically about Parker yet. Porter has 6 years on him so I can’t wait to see what crazy things I’ll be writing about Parker in the years to come. I went to Parker’s first parent teacher conference today. While I was sitting with his teacher, on a tiny chair next to a tiny table, I noticed the coat hooks lining the wall labeled with each student’s name. They looked similar to the ones in the picture. I searched for Parker’s name and couldn’t find it. Then I saw it on a white, plastic hook adhered to the wall right next to the rows of coat hooks. Come to find out, he had to have a hook that was lower than the already low preschool height hooks.
Parker is tiny. Just the other day, another mom asked me, “How old? Eighteen months or 2 years?” Uh, that would actually be 3 ½ years old. He fluctuates between 24 and 26 pounds, depending on who is feeding him (Grandma) and if he’s healthy or ill. He wears 18-24 month size clothes (which I’m getting tired of looking at). His shoes are size 5. He wears a size 4 diaper that he fills up, but doesn’t fill out. The size 3s fit him better, but they get way too wet. We’ll get one more year out of his 18 month Patriot coat, yeah!
Parker’s developmental age and tiny size match. One thing that doesn’t match is his size and the amount of love he gives and receives. It seems like we’ve had a “baby” forever. He feels like a baby when you hold him. He walks and runs like a baby as he toddles around. He gibber jabbers like a baby. He’s our baby and always will be in a lot ways. His teachers told me that they have to remind each other and the assistants to treat him “older,” mostly meaning to stop carrying him around and doing things for him (giving in to him). It’s the same at home.
The average height for a male with down syndrome is 5’ ½ “. That’s the AVERAGE. I’m 5’4” and Clint is 6’ so I’m really not sure where Parker will end up. But it doesn’t matter. He’ll get to where he needs to and be loved all the while, at every age, at any size.

July 4, 2009 "It's Complicated Part Dul*"

As usual, I thought of more to say related to the “It’s complicated….” post. For starters, how many of you give much thought to the boxes you check on numerous applications that indicate race? I’ve always had to think about it. It’s never been just a quick X, and on I go. Over 20 years ago is when I first started filling out applications, first for jobs, then college, then credit cards and so on. I always felt like checking only Caucasian would be a denial of my mother and checking only Pacific Islander/Asian would be denial of my father. I also always wondered why Pacific Islander and Asian were put together, though lately I have seen them as separate choices.
I couldn’t do it, I couldn’t check only one box. So I would either put an X in two boxes, or I would actually write ½ in each box. Sometimes I would check Other, and give no further explanation. Sometimes I would write “bi-racial” for Other and leave it at that. The more applications I filled out, the more frustrated I got with the whole process. I know that most of the time it’s optional, but I still felt the need to enter my info, more to show them that we all don’t fit in a neat little box than anything.
Over the years, the boxes have changed. Some of the classifications have changed to make them more politically correct. I’ve even seen bi-racial, and sometimes the directions will say check all that apply. America is a nation of variety. My paternal grandparents, born in the United States, were full Swedes. You’d never know that by looking at me, but they are.

A friend reminded me of a term used to describe me when I was young, “half and half.” It wasn’t meant to hurt or insult me, and I didn’t take offense to it. In fact, I think my friend who is half Japanese and half Caucasian came up with the term. And though I know I’m part Asian, I still feel a little surprised when someone puts a lot of emphasis on it or labels me in that way. I feel American more than anything. I was and still am influenced by my mother’s culture, but I grew up here in the States.

Here’s another interesting thing about my heritage. When Parker was born, and there were quiet whispers in the delivery room, we suspected that he probably had Down Syndrome. We already knew it was a possibility, and the reactions of the OR staff pretty much confirmed it. Even so, I remember visiting with the pediatrician later that day. He was going over some of the characteristics of Down Syndrome that he saw in Parker, all the while comparing them to Asian features. He has almond shaped eyes, as do Asians. He has small features, as do Asians. He had a small nose with a flat bridge, as do Asians. The consensus was that he most likely had Down Syndrome, though having Asian ancestry made it just a little more complicated to confirm. We waited 3 weeks for that confirmation.

My sister has a blond haired blue eyed daughter. If I hadn’t been there for her delivery, I would probably still be wondering about that one. You’re probably thinking, “Oh, it must be the Swedish grandparents.” All I can say for now is, “Nope,” and that maybe there will be an explanation in a future post.

Still happy to be an American, and a representation of many cultures.

*Dul is the Korean word for two. Just wanted to clarify that my mom is from South Korea.

May 31, 2009 "Lightning"

Lightning never strikes twice in the same place… or does it? Lightning, lightning bolt, struck, bolt, electrified, etc… were also names under consideration for my blog, all related to an old English proverb and also to my life. Porter was my first lightning strike, Parker the second. The circumstances surrounding Porter’s birth and related disability were quite uncommon compared to all of our family and friends.  No one in Clint’s extended family had any children with disabilities, and it is a LARGE extended family. The same was also true for my smaller extended family. None of our friends had anything but healthy, typically developing children as well. We were the exception, the statistic, the unusual.

One of the courses for the special education license I was earning was all about the many different medical complications, diseases, syndromes, etc… possible for infants to be born with or to develop. Of course, in the overall scheme of things all of these conditions were rare, some more so than others. Even so, I vividly remember having a conversation with Clint about it in our kitchen. I was relating to him information about some of the more rare medical situations involving infants. I then told him that with all the things that could go wrong it was surprising to me that so many babies were born normal.

As our conversation continued, Clint brought up kids that have Down Syndrome and described them as many do: happy, loving, sweet. Then I countered with the possible medical conditions related to Down Syndrome: heart disease, gastrointestinal problems, vision and hearing issues, leukemia. Then I said something I thought I’d never say. I told Clint that if I knew that I was going to have a child with Down Syndrome that I would consider an abortion. (A side note, at least 90% of women who are given a Down Syndrome diagnosis terminate their pregnancy.) Little did I know at the time.

I consider myself to be pro choice, but for me personally, pro life. I remember the surprise, maybe even shock, on Clint’s face when I said the word abortion. I think I actually surprised myself too. I explained that I just didn’t think I could have another child with a disability. Actually, at the time I knew that I could do it, I just didn’t want to. Six years after Porter, about 3 years after that conversation, was when I was hit by lightning a second time. Parker was born with Down Syndrome.

So lightning does strike twice, contrary to the popular saying. In fact, I did a little “research” on the term. By research I mean that I surfed the net for information regarding this proverb. What I found was that studies show that lightning does strike two or more times in the same place. Imagine that! So actually, instead of being the exception, I am the norm… or am I?