Thursday, August 28, 2008

Is this denial?

Most of the time when I look at Finn, or even think about him, I have a hard time accepting - or believing, I guess - that he really has Down syndrome. Those "classic" DS facial features are so subtle in him - almost absent. He has other physical characteristics typical of DS: the curved pinky fingers, the simian crease in each palm, the extra space between his first and second toes. When he was in the NICU and the geneticist did her initial visual examination, she said she could make out the telltale brushfield spots in his irises, but only by using her special light - I've never noticed anything about his irises except that they are the most beautiful shade of gray-blue rimmed with deep, deep blue. He mostly looks like any "normal," baby, albeit a small one. Aside from the duodenal atresia he was born with and had to have surgically repaired, he's healthy. He has an ASD, which is not uncommon in the general population, but he doesn't have more serious heart defects commonly associated with DS. He has great muscle tone - normal muscle tone for any baby his age. He does things he shouldn't be able to do as a DS baby: rolling over, smiling, and generally being very active.

So it's hard sometimes to buy into the whole DS thing. I know he has it; I'm not fooling myself into believing that maybe somehow a mistake was made and he doesn't really have it . . . but sometimes it seems like Down syndrome, where Finn is concerned, is nothing more than something written in his medical records. Something that's on paper somewhere, but doesn't actually extend to his actual self. (Does that even make sense?) Sometimes it's hard not to believe, or at least want to believe, that somehow, he'll break all the rules about DS and go through his life like anyone else, doing the same things, with all the same capacities.

Is that denial? Or is it hope? Or is it some of both? I don't even know. I just know that's where I'm at with it right now.

And I think that this is probably the biggest reason why I have found it so difficult, so far at least, to get involved in any sort of formal support system for families of Down syndrome children. There are all kinds of support groups out there - actual, live ones, as well as internet based message boards. I have zero desire at this point to seek out or join a "real life" support group (it wouldn't be practical anyway with how busy I am with a whole house full of kids to look after), and I've spent hours searching the internet for a DS message board that feels like a good fit, but so far nothing does. I don't want to become so consumed with the Down syndrome diagnosis that it becomes Finn's identity, and our whole family's identity. I regularly correspond with a few moms I've developed relationships with since Finn's birth, moms of special needs children themselves, and that's enough for me for now.

9 comments:

mom2twoboys said...

Lisa ~ I have never left you a commnet but I read your blog and have followed finn's story from p.org. I think you have hope, and you have every right to have hope. It's parents like you who believe their child can do anything that have the ability to change the entire thought process with regards to exceptional children. I have worked with a variety of special needs children and I have worked with parents who do not believe their child is capable and I have worked with parents who believe their child can do anything and there is a huge difference in the way that child excels. You having hope for Finn is one of the best gifts you can give him, never let go of that hope and never let someone (like that aweful pt) tell you what your child cannot do. You see Finn, you know him, your hope will need to be there in times when other people try to tell you otherwise. Stay strong and have as much hope for Finn as you would have for any of your children, hope that they will be the best person they can be, no limits

aud444 said...

It's hope!

Finn will form his own idenity no matter what. Screw the standard MO, even if you must tend to it sooner or later.

When I hold and look at Finn, he just seems like a tiny baby to me. It's not like what you're thinking about his "diagnosis" never crosses my mind, but so what? Don't let him (or you) be pigeon-holed by professionals, reports, or some predetermined diagnosis just because you're told you should or have to.

I guess what I'm saying is, don't let that be the leading factor.

I'm a huge believer in mind over matter, for everyone. Sure, you'll probably have to deal with things you didn't have to with the other kids, but hey, just take it as it comes. His future is unwritten, just like all the other kids.

Yeah, it's easier said than done and I'm not Finn's mother, so I can't possibly know how you feel, but I will say this, when he's with me, it'll be business as usual!

I'm a rebel at heart...I'm pretty sure you know this by now.

T-rex said...

You're not in denial, not by a long shot. Finn is a child, not a diagnosis, and you rightly recognize this. You've said it yourself - there's a HUGE range for DS kids just like any other children and it's completely fair and even likely to think that he could be VERY normal, with only some minor difficulties. Hope is what keeps us alive and going, whether it;'s hope in ourself, hope in God, hope in others, hope for the future.... Hope is crucial to our happiness and survival. Finn needs your hope in him and YOU need that hope to keep plugging on toward something meaningful.

I think Finn is phenomenal and beautiful, it is not just you, sd his mother, who sees that. He's growing, learning, developing... his DS isn't something to ignore in that working with it will help him excel to his full potential... but it is just a label to the extent that the person behind it is NOT bound by what OTHERS think he can do. Your hope in him and for him is vital to him succeeding in life.

Keep it alive, sista ;)

Cece said...

Hi Lisa - I also have never commented, but followed you here from your p.org lodge. I have no expereience with DS, but I do with grief. And I seem to deal with things like you do. I went through 3.5 years of infertility treatments, which resulted in an ectopic pregnancy and a miscarriage (and now, I'm 26 week pregnant, thank GOD!). But. I know many people who went through the crap I went through and read all the books and joined all the support groups and went to conferences and all that stuff. I knew I was possibly in a bit of denial, but really how much denial can you be in when you are going through hormone injections for an IVF cycle? I just didn't want my fertility problems to DEFINE me.

I dealt with the issues, but I wasn't running around with a shirt that says 'I GOT PREGNANT WITH THE HELP OF MEDICAL PROFESSIONALS' and I certainly don't have on the bottom of my signature a name for the pregancies I lost at 6 and 8 weeks. Sure - it was sad. But I got over it and moved on with my life.

I don't think that you are in denial about Finn. I think you are totally right about not letting this one developmental thing that Finn has going on DEFINE him (even if it is a major thing). That is great! You are doing really well with all this, and I applaude you.

Laurie said...

Hm...we seem to have reversed ourselves, Lisa! I feel like how you were feeling a few weeks ago and you are feeling how I was a few weeks ago. Ah! Hopefully just a temporary setback on my part...
I am SO glad that you are hopeful. I think that we have every reason to be, I really do. I think that our kiddos will amaze us.
~Laurie

Alycia said...

Hi Lisa,

I think it’s a little of both. A little denial and a little hope. But, you’re entitled to both. You’re entitled to denial and you’re entitled to have hope. The range with DS is HUGE. HUGE. However, as a society we only recognize and see the more severe forms of DS. We notice those more and so as a society we think of DS in a certain way. It's more our own thinking that DS children can't do this or can do this. We as a society stereotype DS. Which is why we think of some of the names associates with DS as cruel, mean, etc.

There is no chart for "full potenital" because it is IMPOSSIBLE to determine what one’s full potential will be regardless of any disability. Every day people reach levels of greatness that seem or they are told were not possible. There is no reason that Finn won’t and can’t do the same. Hold on to that hope because it is the greatest gift you can give him. Expect great things for him because he most likely can achieve them.

Sometimes Dr.’s, therapists, Regional Center people, etc. don’t share all the amazing stories and all the good stuff because 9 out of 10 times the story unfolds the same way. But… there ARE a lot of mildly severe DS cases. A lot! However, most of the time it’s easier not to get someone’s hopes up. At least that is how they view it.

I say accept only the “facts” but nothing more than that. Deny the rest. Deny that Finn can only achieve this or that.

Carla said...

Sometimes hope is the only thing that gets me out of bed in the morning, Lisa. There is nothing wrong with hope...who doesn't want to be around a hopeful person? There is absolutely no reason for you to hope and expect anything less than wonderful from Finn. He is your son, your baby, not a diagnosis.

vintagemomcreations said...

Lisa,
I've read your blog before, but, don't think I've left a comment.
)You can go to my blog to hear our story if you are interested.)
The one thing important for me to tell you is I have 3 children. One in the USAF, One in middle school, one in diapers.
Now, isn't it funny how I just labeled those three children? One is "only" in diapers. (that's her "tag" right? IN DIAPERS)
I think when we let ourselves and our children be LABELED we feel that we must live the label.. must cry over the label. Let me interject here and tell you my oldest.. the one with the "in the USAF" label.. I cry over him daily right now.. He's leaving for the Middle East next month. NOW, that's scary! You know why it's scary? I can't control it. I can't help him fight terrorists.
In ending this comment which has suddenly became a sermon (lol) let me tell you two more things. One, I hope that you and I can grow with our families together.. and two..
My child.. the child with the label" one in diapers" ? Her name is Isabel. She's two years old now. She also has another label. They tell her she has the label "Down Syndrome". She choses to totally ignore that label. We run and jump and laugh and sing just like the other kids did. We plan her future just like the other kids'. We don't anticipate living in a group home.. I didn't anticipate that with the other children either! It's not denial.. it's living and growing with your child. It's hanging onto hope just like you do with your other children. We laugh, we play, we learn.. just a little bit differently sometimes.
Blessings,
Renita

Greg said...

My wife and I feel exactly this way too. We often look at Megan and wonder the same things, contemplating if it is hope or denial...

It is often difficult to tell that she has Down Syndrome form here appearance. You can tell if you look for it. But so many times people are surprised when we tell them. And she is free of any health issues, and like Finnian, she is meeting all of her milestones on time or early. All of which inspires a lot of hope.

So far, in every way, to us she is just like our other three children. (Except she is our only girl. ie: Daddy's Princess).

So I think I know exactly what you mean about wondering if she really has Down syndrome...

And we too have had no desire to get involved with any support groups. Though we do have someone that comes to our home once a month to evaluate Megan's progress and set new goals with us, etc.

We may change our minds in the future. But Megan is doing so well right now that we just don't see the need, nor do we have much interest in support groups.

I just wanted you to know that you're not the only one who feels and thinks that way...