Kaylen has Downs

things are so normal

August 10, 2010

So this pregnancy is going very normal from my point of view.  My wife goes to her doctors appointments, she tells me when the baby is dancing in her tummy, and can't sleep much of the night -- just like all the other pregnancies she's had.  Just because kaylen has down syndrome doesn't mean there isn't going to be a lot of normal stuff along with the challenging stuff. 

I'm going to go out on a limb and predict that the birth will probably be a pretty standard birth with doctors, nurses, some really tight hand squeezing and some loud animal-like noises.  My wife will probably engage in some loud noise making as well.  I doubt kaylen is going to be born with a tail and fangs, and there probably won't be any members of men in black in attendance. 

lately I've been thinking that like all the other pregnancies it's real but it's not real.  it's difficult to wrap your mind around a coming baby until the little one actually gets here and then you get schmucked up side the face with reality.  No matter how much I try, no matter how much we talk about it, and no matter how much information we process regarding downs, its not going to really hit me until kaylen shows up and screams at me.  We've got two months to go and when the contractions start then I'll probably start having hear palpitations and anxiety and then to the hospital we'll go.  True there are some things different:  kim has to see a specialist obgyn; we'll need to have the baby at a different hospital that has a nicu; we'll have to do some pre-planning and preparing based on different birth scenarios.   all in all it's as God intended it -- the birth of a child. 

 

stay kewl

D.

Injuries and my kids

August 1, 2010

So, my back is still killing me.  just to the left of my spine on my hip there's this great pinching feeling and it causes my left calf muscle to tightening and at times spasm.  I think this one is permanent regardless of my ability to keep lifting and training -- yes, I'm having it assessed.

last night I was trying to zercher squat and as soon as I unracked the bar, my back, in the spot described above said, "mmm, NOT TODAY!!"  I actually listened and re-racked the bar.  Now, normally I would have fought through it and kept lifting and dealt with the pain later but part of my thought was, "I can't get disabled because I have three kids and a baby with downs on the way.  I need to be there for them."  I was also really angry I couldn't do the lift.

the information that kaylen has down syndrome has really changed how I process and think about stuff -- like a chronic injury.  I can't just get injured and sit around for the rest of my life while my wife takes care of everything.  Children need a mother and father and need to see them actively engaged in the family; for some reason Kaylen's diagnosis has really hit that point home harder than usual.

It's interesting by many of the issues coming up around Kaylen and her DS diagnosis are issues parents should be considering with all children.  things like being well informed so you can speak cogently with your pediatrician; things like understanding your child so well that you become the expert and teach your pediatrician about your child and their uniqueness; things like having patience and providing a thorough, nurturing environment.

just think what the world would be like if parents invested so much into all children.  See kaylen's already acting as my teacher, reminding me of stuff I knew intellectually but could put into deeper practice.

stay kewl

D.

 

I hate being injured

July 12, 2010

So last week I blew my back out doing deadlifts and now it's affecting every friggin' lift I do.  It hurts to bench, it hurts to squat, it hurts to do curls.  I hate being injured and I think this one's going to last awhile, which means I have to put my deadlift goal on hold.  My current goal is to deadlift 405 and I'm at 375 but I think I'm stuck there for awhile. 

Currently I and my training partner are working an every other day split:

day 1 is legs, chest, and biceps

day 2 is back, triceps, and shoulders

today we did 8 sets of flat barbell bench, five sets of EZ curls, and five sets of dumbbell incline bench.  There's alot more we could be doing but we're limited to 45 minutes on the lunch hour, which means sometimes we'll do alot of supersetting or worksetting.

yesterday was back, shoulders, and triceps.  I did 7 sets of every exercise starting with seated military press, then bent bar bell rows, then skullcrushers, then dumb bell bent rows, then arnold presses, then seated cable rows, cable tricep press downs, and finally cable shoulder raises.  I did four or five sets at a weight which I could get five reps with a little work and then the last two or three sets I dropped weight so that I could do sets of 8 or ten.

Alot of times when I'm in the gym, I like to just play.  I know what body parts I'm training so I sort of pick and choose the routine on the fly as long as I'm hitting the body parts I want.  I depends on my goals that day.  Each routine is designed to help me meet my current lift goals:

flat bar bell bench: 225; currently at 195

back and zercher squat: 405; currently at 315

deadlift: 405; currently at 375

seated military press: 225; currently at 145

that's it for now

D.

Oh, Yeah baby

July 12, 2010

Hey, folks this daddy is a happy daddy.  I just got a call from my wife kim.  She had to see a specialist today so they could do an echocardiogram on Kaylen to assess the health of her heart.  The heart is one of the major organs affected by down syndrome. 

Kaylen's heart is healthy at 24 weeks.  yep, I'm feeling peaceful.  sort of like all will be well in spite of the storm.  Kim was almost giddy on the phone, as she should be. 

I'll drop another, more substantial post later but wanted to drop this good news.

everyone be cool

D.

Downs updates

July 10, 2010

According to the journal of the american medical association, the prevalence of children born with down syndrome is increasing.  Inspite of the fact that many women who's children are diagnosed in utero are terminating their pregnancies. 

Doctors and medical science continue to unravel the secrets of the 21st chromosome.  They've identified a critical region on one arm of the chromosome which seems to be the area responsible for many of the characteristics associated with down syndrome.  They have also found two specific genes in this critical region on the long arm of the 21st chromosome which are seem to be most associated with the phenotype of DS.  These proteins are over-expressed in the hippocampus, cortex, cerebellum, and heart, as well as initiating the processes which lead to the formation of plaques and fibers which are thought to be the genesis of alzheimers among people with DS.

in 2009 research, it was discovered that mice who had similar chromosomes as those found in humans with chromosome 21, had greatly diminished downs characteristics including the intellectually diminished functioning -- their ability to learn was enhanced.  This report was published with great caution tho, because over dosing could lead to extremely deleterious effects and thus the research is very exploratory in nature. 

In more resent research, investigators found that memantine eliminated deficits in hippocampal learning.

there is much good down syndrome research happening and as a psychological scientist, to me this is encouraging.  there are probably many areas of learning, psychology, and behavior that have not been investigated which when combined with genetic, neuronal, and chromosomal research could lead to great advances in down syndrome research -- improving the lives of those born with down syndrome

Reference

Einfeld, S., & Brown, R. (2010). Down syndrome - new prospects for an ancient disease. Journal of the American Medical Association, 303(24), 2525-2526.   

http://jama.ama-assn.org.ezp.waldenulibrary.org/cgi/content/full/303/24/2525

 

have and awesome day

be kewl

D.

staying healthy

July 8, 2010

So it's been a few days since I dropped a blog -- tough.

I really don't have alot at the moment.  I'm currently struggling to keep my lower back healthy because I've got two blown discs in my lumbar spine and I insist on lifting heavy weights doing things like deadlifts and squats.  it's sort of an addiction.  I was thinking that I do need to be careful for all my kids.  I can't just allow my body to go in the toilet because I need to be able to keep up with the older kids and stay strong for the younger kids.

Now here's an interesting thought.  when your body is not feeling right, perhaps you're sore, perhaps you're sick, perhaps you're not sleeping well; all of these things are interconnected with your mental state and if your mental state is off then your parenting is off.  If you have a child with challenges then you need to be one your mental game more times than off and I'm betting one of the easier fixes is to keep yourself physically healthy.

Chronic pain and sickness generally facilitate depression, irritability, annoyance, and anger and when you have children these things don't work so well in the nurturing process -- I'm betting they work even worse with a child with down syndrome.

So dads, stay fit, stay healthy, and be strong.

D.

Research report

July 3, 2010

So, my last post resulted in some really good discussion between my wife and I.  One of the things I discovered is that we are educating ourselves differently regarding down syndrome.  I think it's a very interesting difference and one that should be taken into consideration when a couple is told their soon coming child is diagnosed with downs.

In two weeks my wife has amassed a huge amount of information downs through book acquisition and I've gotten much of my information from her as she reads and share what she finds.  Many of the books relate to the experience of other parents particularly mothers as they go through pregnancy and raising a child with downs.  They very relational, experiential, and relational -- excellent stuff.  they also usually contain good basic information about down syndrome and the effects of the 21st chromosome.

I haven't done a lot of reading yet.  I've spent my time searching academic databases finding original research on downs and children with developmental delays.  I want data, I want to read the research, I want to know what the medical and behavior scientists have discovered. 

Now between the two of us, I'm thinking we'll be able to come up with a good picture of down syndrome, some parenting expectations and experiences, and knowledge about interventions and practices.

As parents, I think its important to know how you learn and from where you like to get your information.  My wife is much more experiential and relational, while I tend to like to get information from research data (of course at times, it flips depending on the subject, so these are not mutually exclusive and not one better than the other), but if you don't know how you're going to learn about down syndrome as a couple then the process of learning may lead to some relational problems because one person may feel as if they are doing all the learning and it may appear as if the other person doesn't care. 

Both people, both parents need to function as a team when raising a child with challenges. 

I encourage the men to take an active part in the learning process.  Search for information in the way that best suits you and share it with your spouse.  Actively discuss with your spouse what she's discovering.  And above all -- don't leave all the work to her and expect her to just teach you.  Talk about a recipe for chaos and hurt.

So, with that all said, once in a while I'll share some of the research I discover as I'm digging in the academic literature.

Mitchell, D. & Hauser-Cram, P. (2009).  Early predictors of Behavior problems. Journal of Early Intervention, 32(1), 3-16.

The basic scope of this article was to determine what factors predict behavior problems at the age of 5 among children which developmental delays.  the researchers compared children with downs, typically developing children, and children with movement disorders at the ages of 3 and 5 to see what factors assessed at age three would be predictive of behavior problems at age five. 

They found that children with down syndrome had the lowest rate of overall acting out behavior or challenging behaviors and that children with autism had the highest rate overall.

their conclusion was that family climate had the greatest predictive value.  family climate is whether the family functions harmoniously or if it is chaotic and abusive; the more harmonious and nonabusive the family environment the less the prevalence of challenging behaviors at the age of five.

This research indicated two things: 1) ages 1-3 are extremely important in the determining of future behavior among children with challenges; 2) a harmonious family is necessary for adaptive coping and functioning.

One disturbing note in this research is that no where were fathers mentioned; they weren't interviewed, they weren't assessed; they're education levels weren't noted nor where their income levels.  I'm seeing this as a trend in the academic literature and I don't like it.

the impact of fathers on children with challenges appears to be a completely untapped area of research.

 

be kewl

D.

 

unexpected honesty

June 29, 2010

So, apparently this whole dealing with how people react when you tell them your child is diagnosed with downs goes on for a bit of time -- for a minute, as the inmates would say. 

I'm still a little taken aback by some people's reactions to the statement: my daughter has been diagnosed with down syndrome.

I told a pretty good friend of mine today.  he's very bright, an extremely talented musician, fancies himself abit of a liberal, and almost finished a law degree. 

when I told him, he got a very serious look on his face, looked me right in the eye and said, "Oh, my god, I'm sorry."

I said, "don't be, it's all good."

he said, "no it's not.  I'm so sorry, I hate it when bad things happen to good people."

I said, "I'm not sorry."

and the conversation seemed to mystically move on from there.

I wasn't angry at my buddy because he gave me his most honest, heartfelt reaction which required me to check my thinking and my level of honesty with myself and others.  I appreciated the fact that he truly understood the potential gravity of the situation and was willing to not sugarcoat his reaction. 

that's a true friend.

His statements had nothing to do with bias and stereotype, it was simply and expression of concern for myself and my family based on an understanding of how big an impact this diagnosis could have on us.

It brought me back to reality.

It brought me back to the realization that this is big smoke and no matter how much I hear about how wonderful a child with down syndrome can be, my friend's statements made me look directly into the eyes of the future and realize, "holy crap, this is big smoke. this is not a walk in the park among the daisies, this is potential heartbreak and much work for the rest of our lives."

really, no matter how you spin it and no matter how cool it is to be having another baby, I also have to be realistic and understand that this is one of the most significant and huge events to happen in my life and with it there comes potential for some serious emotional rollercoaster riding; some significant frustration, irritations, and pain.

Yep, my friend, with a few honest words, spoken directly into my heart showed me I need a balance of excitement, faith, and soberness.

God is good but this is one ride fraught with highs, lows, fears, joys, heartaches, exhilaration, laughter, and pain.\

this is not too terribly different from being a parent in general but the diagnosis of down syndrome brings a sobering reality which I never experienced with the birth of my other children. 

thank God, he is ultimately intelligent and wise -- cause I'm lost.

D.

Jung was only a partial idiot

June 27, 2010

Yes, so today I turn forty years old.  Carl Jung said that life begins at forty.  I interpret this to mean that a person finally figures out how little they know and develops the ability to learn and enjoy life.  we stop living in such a reactionary mode and start using our experiences in a purposeful, rational manner to really live life.

this is why I'm really glad that Kaylen waited 'til I was forty to show up; if she would've been born when I was 28 instead of my oldest son, it probably would've have been a very bad time.  I thought I knew everything; had a massive ego; and there was no way I was going to have a child which I perceived to be imperfect.  If I would have I probably would have held a grudge against God, gotten all bent outta shape, been really bitter, and spent most of the time not being very nice to kaylen. 

Thank God for turning forty.

life at 40, for me, kinda turns into a big episode of Blue's Clues.  Now I'm smart enough to actually recognize a clue to living, when I see one.

here's clue number !:

there's nothing worth getting bent out of shape about.  It won't change anything and it'll probably make things worse.

Corollary to clue 1:

the more you embrace the good, bad, and ugly of life with faith, rationality, and passion the more it's all good.

Even in matters of social justice and righteous anger, getting chaotically and emotionally bent out of shape accomplishes nothing.  rational purpose and critical thinking powered by righteous passion are far more effective for facilitating change.

So once again, thank God for forty, and that he thought enough of me to allow me to get a glimpse of wisdom once in awhile.

Stay strong

D.

Not so fluffy tonight

June 25, 2010

Ok, I know people are really trying to being encouraging and reassuring, and I'm not angry at people for their many wonderful comments and discussions with me when they hear that my wife and I are having a baby with downs.

but I must say, I'm tired of hearing about how kim and I are the ideal parents for a child with down syndrome.  I'm not the ideal parent for anyone.  As a dad I screw up royally and blow it big time in big ways and because of that I'm scared silly about having a child with special needs.  I'm just not that cool.  I think I'm competent but that's about it and hopefully it's good enough. 

second, I'm tired of people telling me about "those people": those people are so happy; those people are so joyful; those people always see life in such a great way; those people show us what's really important.

really?  if those people (as if they're aliens or something) are so astounding then why aren't all expectant parents wandering around saying, "Gee, I hope I have a baby with an extra chromosome, cause they're so cool."

they're not those people, they're just people.  they learn a little slower, they talk a little slower, and they move a little slower but so do most alcoholics and we don't spend time idealizing them.  I know where this comes from, people are trying to share their positive experiences they've had with people with downs, in an attempt to allay my anguish over having a special needs child, to tell me that it'll be ok and to no be sad, some good may come of this.

problem is I don't have any anguish or upset over having a baby diagnosed with down syndrome.  I'm scared but not upset, sad, bent, annoyed or bothered.  I'm having another kid and I have a wife willing to have another kid and that's awesome.  Kaylen Coe will be just like my other kids who are happy, sad, joyful, mean, angry, upset, irritating, annoying, bothersome, and a blessing.  My three current children learn things very quickly generally -- except how to pick up after themselves but Kaylen will learn some things easily and most things she will struggle with -- it'll be like raising a politician. 

finally, you don't have to say "I'm sorry."

I'm not.

It's ok to not know how to react when I tell you my next child has down syndrome, just ask me how I'm doing and let me bless you by telling you I'm doing well and that God is good.

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babies with downs have a much higher probability of  not making it through a pregnancy.  there's a very real possibility that kaylen coe may die before being born.  that's why I'm happy we picked a name for her already.  If she dies I have a name which makes it much easier to mourn for her -- yep that real talk kids, get used to it.

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hey, I'll try to be a little more uplifting and fluffy next time, but this is about me and what's going on with the daddy and that's what's going on.  I hope I haven't offended anyone because I know that each person who says something is trying to bless me and be supportive and reassuring, so thanks.

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Bring the noise

Darrin Coe

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