Wednesday, February 13, 2008

Tammy asks...

A not so simple question...

Hey Stacy,

Ever since I started reading your blog, it seems like I know you. At least I know where you are coming from, since we are both dealing with the aftermath of prematurity. I have been wanting to ask you if you have found a reply to that question that everyone asks, "How's Paige doing? She looks great." I'm asking this because I have yet to come up with an appropriate response. Whenever someone asks "How's Daniel doing? He looks great." I just let out a big sigh. I never say the right answer. I don't want to glaze over it, like he's a walking miracle but at the same time, I don't want to get into his medical issues. And somehow I always end up walking away upset. Because normally, I say yes, he's great. (Daniel is usually within ear shot). If they start asking more questions, I feel an obligation to say he has some issues, but we're dealing with them. I try to keep the conversation light, but people can be persistent and when you tell the whole truth, I tend to get feedback like, "we'll you didn't think he wouldn't have problems. It could be worse." I am starting to think that people don't want to know the truth about prematurity. I just wish there was a good reply for this simple question that I can't seem to avoid and expect to hear for the rest of my life. So, if you have found the answer to this question, please share it with me. Thank you and thank you for all your work. Your blog is truly an asset to the preemie community.
mom to Daniel, 6 (24 weeks)
PS, if you don't have the answer and want to share the question or content of this email on your blog, you have my permission.

Hi Tammy,

Your question of "what to say when asked how he (Daniel) is doing" is not so simple. For me, it changes both by the day and by who is asking me. Now there is another factor... whether Paige is with me or not.

I first wrote about it here How is she doing?

If Paige is not with me, no matter who asks, they get the truth... all of it. As I start to talk I can tell if my words are going to fall on deaf ears. I'm sure you know the look. It starts out with a glazed look in their eyes and then their facial expression says, "I didn't want to know the all of this. I just wanted you to tell me she is fine so I can go back and tell the world that all preemies turn out fine." To these people I usually shorten the update, but still tell the truth. Years ago, I never used to be honest. I always said that she was "fine" and left it at that. No longer do I do this though.

Again, if Paige is not with me, and the conversation turns to resuscitation, I am honest about my feelings. I never try to make others understand how I could feel this way, but I do make my feelings known.

Now, if Paige is with me it gets trickier. My standard response is "she deals with the typical long term issues related to prematurity and has escaped some too." and then I usually go into being the typical proud mommy and brag about her school accomplishments and how she is such a wonderful big sister. Some people will ask me to elaborate and I ALWAYS ask Paige for permission first. Always. Last year Paige asked me to check with her first before I talk about her. She said that it didn't "really" bother her but I could tell that she was feeling something that she couldn't verbalize. I honor that request. So far, every time I've asked, she's gladly agreed and usually starts to explain on her own. It's fascinating to watch.

But, we came up against a new situation recently. Paige was the star student of the week a few weeks ago. I had to write a letter about her and include pictures. The letter was to be read by the teacher, to the entire class. Paige asked me to talk about her early birth in the letter and include a NICU picture. I wasn't comfortable with this because I wasn't going to be there to explain what all of the wires and tubes were for. And, she is now of an age where the kids tease each other. Instead I chose to include her birth footprints, which are super tiny of course.

As she exited school that day I could tell something was wrong. Paige told me that they had a substitute teacher and that the sub read her letter. After the letter, the sub asked her if she was OK now. Paige responded by telling her everything that she deals with. Everything including the mental health stuff. I could tell that Paige was upset about this exchange. She has no problem telling docs anything they need to know but this was asked in front of 20 of her peers. Paige told me that she didn't want to answer the teacher but didn't know how to avoid it. Her and I sat down and came up with a plan in case that happens again and I told Paige that I was sure the sub learned her lesson. I wish I could have seen her face when she heard my sweet beautiful little girl talk about her life.

I wanted to be angry. I really did. But, all it did was reinforce my belief that the general public is seriously misinformed on the long term issues related to prematurity.

The above represents my experience Tammy. I hope everyone will offer their advice to you on what to say when someone asks, "how is he doing?"


Kristie McNealy said...

I wish I had a good answer to this. I know that a lot of people would prefer me to just say "she's great" when they ask about how things are going. I don't think that's fair to our preemie though, because she has some problems that I know we won't know the real impact of until she gets older. I don't want it to be some sort of surprise if she gets to school and has real issues. Since we don't have any very concrete problems right now, people act like I'm trying to find something wrong with her if I talk about some of her sensory issues or similar things.

Anonymous said...

I also don't have a good answer. When my brother-in-law asks me how my preemie is doing, I know he wants the truth - he has two preemies. We are getting close to the anniversary of me ending up on hospital bedrest. I tend to get in a funk around this time. Whenever I talk to people about my feelings, I get the response, "But he is doing so well now." Well... sort of. He has this little thing called hypertension. Plus he is still so young - I don't know if he'll have other long term issues from being born too early.
Oh, Kristie - I totally understand what you are feeling about people thinking I am trying to find something wrong with him. I frequently am told to get off the internet!
Good luck Tammy. I hope you find a way to answer that question that feels right.

Anonymous said...

When you read the advice about telling your kids the facts of life, they say to give small bits of info at a time. Answer only what is asked and don't (try to) give the whole story at once . . .
Maybe that could be a rule of thumb for us in these circumstances. That is, say a sentence or two such as "She has issues as a result of her premature birth." (Pause to see if listener wants more info/asks another question.) Or, "We're stable right now, but it has been rocky at times." (Pause to see if listener wants more . . .) Or, "We've had some medical/educational crises lately . . ." (Pause to see if listener wants details . . .)
Or, "S/he is able to do more than we ever expected s/he could, given her/his rought start as a preemie."

I had a conversation this a.m. with Vic's teacher, unlike any other I have ever had. It went:

"Isn't he amazing?"
"Yes, his orthodontist calls him 'A hoot'."
"Don't you envy him sometimes?"
"Why? Because he's so oblivious?"
"Well, because he's so Zen, without a worry, not projecting into the future . . ."

This conversation was between two people who really appreciate Vic, believe me. I hope all of you can have some conversations like this at some point. I cannot describe the feelings of gratification that I feel when I know someone appreciates my son for who he is.

Chris and Vic

terri w/2 said...

We ran into this recently as well when my daughter had gallbladder surgery. One of her nurses - a floater from OB was just GUSHING over her when I walked in one day - telling her what a MIRacle it was that she survived her early birth, and isn't it a MIRacle that she's doing so well. .isn't it aMAZing what neonatal can do - blah blah blah. When I walked in she continued it with me, and I stopped her. I said yes, J has done well considering her early birth. (Really, I wanted to say - and did you see in her records she has CP and high functioning autism? But for J's sake, refrained from pointing this out to this obviously clueless nurse.) But. .I did say "her twin sister also survived and is in a wheelchair due to severe CP, is profoundly mentally retarded and has uncontrolled status seizures due to HER prematurity."

Pretty much shut the conversation down. Ok, I was in a mood. .most of the time I wouldn't have been so direct.

I guess sometimes it feels good to set the record straight with some people - others, I would have spared the brutal truth. Most of the time though when it's people who truly know us and care about us, I give them a version of what's happening without scaring them too much into thinking they shouldn't ever ask again.

Helen Harrison said...

My own approach was to trust my own instincts, and my husband's.

We had all sorts of unsolicited advice from "friends" and family: "if you'd just stop being so over-protective" and "your son intuits that you are worried about him, and it causes his problems" or "if you'd just institutionalize him, and get on with your lives, everything would be fine."

All of these things, and more, were said to us over the years.

At some point you just have to realize you are in a place that the rest of the world (most of it, at least) can't understand or cope with, and you just have to do the best you can...and to hell with the rest of them.

When you reach this stage,and can just listen politely, nod and smile, and then totally ignore them, you will have made a huge step forward toward peace of mind.

Anonymous just for today said...

This topic is so relevant for me right now.

I've come to the conclusion that people DO NOT want to hear anything other than "Yes, everything turned out perfectly." I've long been torn between not perpetuating the miracle myth and yet I'm not up for educating the world.

This weekend, I have to host some relatives, and I'm absolutely nauseous about it. We've become somewhat estranged due to my daughter's prematurity.

See, this one relative has an adult son who's in a group home. An accident at birth led to severe CP and profound retardation. For 18 years this relative changed diapers, etc, for her son who's permanently a newborn.

The family rules are that compared to that, NOTHING is worthy of any sympathy or concern.

I would never in a million years compare my experience to hers, but evidently I'm not allowed to be anything but overjoyed, because my daughter will walk and feed herself. For me to worry about sensory problems or verbal delays is selfish and lacking in perspective.

(Note, I do NOT complain or fret in front of this relative, or dwell on my experience, but as they're our only local relatives, they were there when I came out of surgery.)

I've been called all sorts of terrible names, and the crazy thing is, I am in awe of this relative, and how much she handled with grace. I thought that although I can never imagine what she went through, she could imagine what I went through, by just downgrading her hell.

In MY family, on the other hand, during my daughter's first year of life, there were three diagnoses of cancer, and a heart transplant that led to a drawn-out, excruciating death via bed sore. Everyone has plenty of love and sympathy to go around. I wrote letters to my aunt while we were in the NICU, and my uncle asked about my daughter while he was on his deathbed. There was no competition for who had it the worst, and everyone had plenty of love to go around to everyone who needed it.

So I just don't know what to say to people. Total strangers ask the question, and they can't possibly want anything but the sunshine and roses version, so why do they ask at all? To make themselves feel better. People are very uncomfortable around disability.

Most days, I can indulge them, but there are days when I just can't bring myself to lie to make them feel more comfortable.

I'll be anonymous for this post, just this once, although I doubt that the relatives in question will ever stumble onto this blog, and they'd definitely recognize themselves if they did.

Anonymous said...

It's a tough one. For some reason, my little guy, who is five and recently started school, has defined himself and anything he does wrong as a result od his "aaasthma". He even says it weird...
Anyway, when people ask how he's doing, I talk about the good stuff, but I usually start off with a comment like "Well, he had a wretched first year,and that leaves it's scars" People will then sask for more info, or not, and I oblige, if little guy is not with me.
I mean, really, who wants to hear about undiagnosed and uncontrolled reflux that meant he didn't really eat until he was two, or about beingunable to look anyone in the eye "It hurts Mummy", or about prosopagnosia, or left side weakness, or horrible co-ordination, or a shitty immune system that ends him in hospital every 3 or 4 months.
To most people, he looks "normal", if a bit skinny, but we live in Australia, so even at the pool or beach he wears a rashy top, so it's rare that people see his little "riblets".
I'll be interested to see how little guy responds when people start asking him these questions. I'm glad for the heads up, though sorry for Paige's experience. I guess I need to have a talk with my guy about how to respond to these things.
I still haven't figured out how to talk to him about his face-blindness - I think I'm still ina little bit of denial about that one, and I also don't want him to define himself that way, or use it as an excuse not to *try* and remember faces...
anyway, that's another story...

terri w/2 said...

Anonymous just for today - boy, can I relate to your post. . My family is also very large, but distant. My parents who are very pro-life have not ever helped with the care of the girls. (I can't say that I've been singled out - my parents were not the typical grandparents that really enjoyed caring for any of my siblings children either.)

It's interesting that relatives will often ask how things are going, but they really are so very clueless. I've given up trying. I pretty much keep issues to myself with my family, as they too, are quite judgemental. For instance, I have a sister who insists that one of my twin daughters' Aspergers and NLD are not what she's been dx with, but rather a result of me being a divorced "single mother." This same sister called when my other daughter came home from the NICU -of course, everyone thought things would be fine (she lived, right?) I tried to explain that with a grade IV IVH, things are not going to ever be fine. This sister's response - "well, I hope she's not going to be reTARDED or something!" I told her that retardation was probably going to be the least of our worries. She was horrified. Some support.

It is exhausting to try and get anyone with this mentality to understand. So I no longer am trying. My daughter with AS/NLD also has a very difficult time with large groups, or loud people - my parents have hearing issues, which makes them shout at each other to hear and be heard - needless to say, my daughter cannot manage visiting with them for any length of time, nor can she handle the large family gatherings. My family takes it as her being stuck up or arrogant, when it is nothing like that - explaining this is fruitless.

I really do feel that issues like ours creates a post-traumatic like response in us. We simply do not fit in with our kids, so we slowly, slowly withdraw from all those situations and people that make our lives challenging. This preemie parenting is a very isolating life.

Anonymous said...

Terri w/2 writes that being a preemie parent is an isolating experience . . .

To me, this brings us full-circle in that historically, people with disabilities were shut away from public view or SENT away . . .

Having followed this discussion, I now know how easily this could happen, and that it comes from both sides--from the family of the person with disabilties as well as from "society".

To remedy this hiding/hidden issue, IDEA was conceived . . . so that people with disabilities could move about freely in society, and take advantage of what we have created for ourselves with our tax dollars in society: schools, transportation systems, access to neighborhoods, buildings, jobs . . . No longer to be hidden away or in-hiding.

Victor's teacher has taught me a lesson. Recently I told her that we no longer go to the Irvin Young Auditorium, a great venue on a college campus nearby, where there is outstanding cultural/entertainment opportunities. We don't go becasue Vic is a poor audience member, talking out loud during a performance. If he does not get the preferential seating reserved for people with disabilties, and he cannot see, he is even more of an interruptor. Mrs. D., the teacher, said, "Oh, well, then we have to work on that so that he can take advantage of the high-level entertainment that is brought to Irvin Young every year."

She is right, of course. I, being weary and experiencing creeping defeatism, have backed down from putting my child with disabilties out there in the community, where he has just as much a right to be as anyone.

I think it is okay to back away from people who don't understand, who stare, who are clueless, but only up to a point. Then I have to lower my head into head-butting position, expose my sharp horns and charge back in to the fray.
For Vic's sake. And so that we never go back to the way it was before IDEA, being hidden away and/or in-hiding.

Chris and Vic

The Preemie Experiment said...

Chris wrote: "I think it is okay to back away from people who don't understand, who stare, who are clueless, but only up to a point. Then I have to lower my head into head-butting position, expose my sharp horns and charge back in to the fray.
For Vic's sake. And so that we never go back to the way it was before IDEA, being hidden away and/or in-hiding."

So very profound Chris!

The Preemie Experiment said...

anonymous just for today wrote: "Most days, I can indulge them, but there are days when I just can't bring myself to lie to make them feel more comfortable."

Very well said. I think many of us go through these same feelings. Each and every time a family member asks me how Paige is doing, I have to stop and think about a) who is asking and b) how much to say.

Even during times when I think I've used my best judgment and answered accordingly, I been labeled.

There is no winning with some people. They have formed their own opinions and there is no changing their minds.

Anonymous said...

Wouldn't you think that as time goes on, peoples' social skills, their levels of sympathy and acceptance would increase--not decrease?! Especially if they are family members?

I expect everyone to grow and evolve. If we are not growing and evolving towards tolerance/acceptance, then what ARE we doing--devolving??!!??

And if family are not more and more sympathetic and accepting and less clueless, then what will happen at family gatherings, around birthdays and holidays?
Grief? Awkwardness? Or worse?

My own mother (admittedly in the early- to mid-stages of dementia) had been intollerant of Vic. She once kicked him at a family gathering because he was talking on and on and interrupting and rocking . . .

Unfortunately, there were also people at this gathering who had licenses that mandate them to report child abuse/neglect. So, I found myself calling my ped to report this incident before the mandated reporters could report it. I had to promise the ped to keep Vic out of my mother's room entirely, so that there would be no chance of them having an encounter . . .

I sternly told my mother the conseequences of this act. It is hard to know how much she understood. But she must have understood it somewhat because she said "Oh, I see--you are choosing your son over your mother."

I am telling this story as a cautionary tale--because in my case, this is where intollerance led . . .

Chris and Vic

some mommy type lady said...

I ponder this daily.....

With my 28 week twins now in the school system (grade 1 ) and all of the issues that have now surfaced, I truly wish I had the answer.

Christy said...

"Is he ok now?" is the question I get all the time about my former 25 weeker Elias. And I too get so overwhelmed with how to answer this question. Sometimes I want to say, "Well, besides struggling with movement, balance, vision, breathing, growth, processing, understanding, and communicating...he's doing great."

Other times I want to rave about my four year old boy who knows that his two breathing medicines are called Xopenex and Flovent and he can pronounce these strange words correctly. I want them to see past his diagnosis to his humor and resiliency...but as others have said, I often have to think about who's asking the question, whether Elias is with me, and what mood I'm in at the moment.

I've really enjoyed reading this post and all the responses people wrote. Thank you.

I'm new to this blog and really enjoyed reading everyone's comments.