Friday, August 17, 2007

Don't Tell Her That!

Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.

Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."

Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.

Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.

I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.

Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.

During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?

We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."

Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.

She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.

As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.

I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!


Nancy said...

I fully intend to let Tyler tell his own story. That is HIS story. He should know why he doesn't work the way others work. HOWEVER, I also have full intentions of keepin certain aspects of his condition away from certain people. Sadly enough my sister in law is one of them. I wouldn't want Tyler to be treated badly. I know he will be treated differently but to be treated badly is a different story.

The story he has to tell is amazing, why not teach him to exalin it to others and to advocate for himself. Kudos to you and Paige. She will advocate well

terri w/2 said...

Absolutely! They should know their story! It's like sex education .. you tell them as much as they can understand when they are ready. When they are questioning, they are ready. As they get older, they can have more of the details filled in for them (by us). I agree with you 100% PE. It's amazing that anyone would think that information should be with-held. Recently, one of my 21-year-old's asked for her NICU med records. I had her d/c summary, and she poured over that. She had lots of ques, naturally, and learned a lot of things she did not know previously. How can we expect them to learn to be advocates for themselves unless they have appropriate information?

medrecgal said...

Your response reminded me of a conversation from several years ago wherein someone asked me, "Did you always know about your shunt?" I said something along the lines of, "Well, of course, why wouldn't I have?" She explained that she thought maybe my family would have treated this kind of history as something to hide, as if it was something to be ashamed of. It wasn't my family who made me feel ashamed of my medical history; no, that was a job very well accomplished by an education system that was too concerned that they might face a lawsuit if I was injured participating in PE class. I could tell stories until the end of forever about this one. This was actually why I had started writing in high school, because I didn't know how else to deal with it. It took me many years and a ton of help to get over the sense of shame that those thoughtless bureaucrats had pounded into me. These days I know who (or what) was responsible for this...and it wasn't my shunt! I'd been living with it for 13 years before everything hit the fan, so it took me a long time to make any sort of sense out of the whole nightmare. Then when they realized that my cognitive issues were posing problems...they turned it into more reasons to continue ruminating over my history. The only upside to the whole fiasco was finally having the opportunity to get to know my neurosurgeon and hear the story behind this hunk of history. It filled in a lot of blank spots, sometimes in rather astonishing, graphic terms. I learned more about shunting procedures--and medical ethics--from this man than most people learn in a lifetime. If I ever do write the whole story down and get up the nerve to try and publish it, I'd love for him to read it. He's the only major player in the story (aside from my family, of course) who I don't hold responsible for the insanity that was the last half of my traditional schooling. So yes, by all means, anyone with a medical history like this, particularly if it has ongoing consequences, should know about it. This is no place for secrets and shame.

Chris and Vic said...

In the 12-step programs, you learn that families who keep secrets are unhealthy/dysfunctional.

How do we feel about other kinds of cover-ups? In politics, for example?

Telling kids as much as they can handle may be trickier. Just answering their questions (at first) without going into detail that may be confusing . . .

So I feel that HOW you tell a child is an art!

Confronting an unpleasant truth is also a part of this. This is not a task for sissies.

I think we also have to try to monitor what others are saying to our kids about their conditions and behaviors, strengths and weaknesses.

Lastly, I think telling our kids in a laser way about their conditions forces US to process what happened to our kids and what it may mean in school, and for their future. I think the kids will take their cues from US---if we are still stricken, angry, depressed or deep in grief, the kids will believe that is the right response. If we are matter-of-fact, or accepting or even optimistic, our kids will take on our perspective as well as the info.
Chris and Vic

The Preemie Experiment said...

Chris wrote: "If we are matter-of-fact, or accepting or even optimistic, our kids will take on our perspective as well as the info."

Hi Chris,

I could not agree with you more!

Since Paige was hearing her birth story, since.... well.... birth, it was not shocking to her. We never put emotion into it at all. State the facts and move on. Even when nurses, PA's or docs would ask us things like, "wow, 78 days in the NICU, that must have been incredibly hard for you." we would just redirect them and move on. We also always focused on how far she had come and how she was not the same as the little baby in the NICU.

Just a few months ago, for the first time, Paige asked, "were you and Daddy sad when I was in the NICU?" That's how little emotion we've put into it over the years.

I think the reason why medical staff, strangers and family have a hard time hearing us discuss Paige's beginning is because it's shocking to them. But, to her, it's just the same story she's heard hundreds of times.

I am just the mother said...

Of course Paige should know her birth history. My boys will know their birth history. Its just crazy to me not to be open and honest about it.

I used to work in a peds cancer clinic. I was amazed by this family who didnt tell their son, who was 11 at diagnosis, that he had cancer. He just came in to the hospital once a month to get some iv "medicine" to make his body super strong. The kicker to this whole story is that the Dad is a pediatrician. I could never figure this one out.

Andrea said...

I agree with you 100 percent, PE. I'll have no problem telling Dylan what he went through. That's easy (in my case).

What was much much harder was trying to explain to my 5 year old that he had a brother who died.

Chris and Vic wrote: "So I feel that HOW you tell a child is an art!

Confronting an unpleasant truth is also a part of this. This is not a task for sissies."

God that resonates with me. We are trying to make talking about our first son, Jack, a natural part of conversation in our home. Not a boo-hoo, dramatic thing. Just when it comes up, no heavy silence or hiding it.

But I don't look forward to having to explain this to Dylan.

Any ideas?

Carrie said...

I had a student (8th grade) that had Aspergers, but his parents didn't want him to know that he had the label. The student knew he was different from his peers. I am sure he will self-diagnose himself soon, if he hasn't already. It was quite sad; his parents also didn't want any special education help unless it could be done without his knowledge.
You are doing right by Paige.

The Preemie Experiment said...

Not tell your child they have cancer or Aspergers?? Geesh! And I catch grief giving birth history in front of her!

An afterthought... the only time hubby and I talk to a doc without Paige present is with her psychologist and that's only on occassion. Her current psychiatrist always talks to us with her in the room. He feels that she is fully aware of her OCD behavior and wants her to be in charge of her care, with our help. It has made a huge difference in her mental health care.

Jennifer said...

Although I always knew I was a preemie (from pictures of me in the NICU) nothing in my life was EVER linked to prematurity.

I was socially immature until 8th grade (this was even after I repeated a year), but I don't believe linking that to prematurity would have changed anything other than creating a label to attach to myself and giving me a crutch to lean on (I always had excuses!) when in reality it would change nothing.

I excelled in school but had few friends. That would change after I found my 'nitch' in music but up until that I hated school and hated the kids at my school - but again, knowing that my emotional problems may have had a preemie link wouldn't have changed anything.

Therapy in 1986 for someone that isn't classified as physically or mentally disabled? Never!

What could have been done differently in my case? Nothing that I can think of. I've racked my brain over it for years and can't see much different my parents could have/should have done other than finding activities that I could excel at and build up self confidence.

My self confidence was tied (and still is) to my weight - and issue that may have been preemie related but knowing such wouldn't have changed much. Maybe it will for the future...

Hopefully it will for the future...

Shannon said...

Isn't it interesting that the people who are surprised with our forthrightness are not living with a child with a history? The first time my son said "Mama, I want to walk." I was prepared to tell him that we'll just keep working to see what his muscles can do. He knows that he has CP. No surprises and no drama aside from crying myself to sleep that night. Three months later he said to me "Mama, now I want to run!". Their battles are no secret to them and it would be a mistake to think that we are sparing them. From what? This is life-and we're having fun!

Nine Texans and friends.... said...

Honesty is the best policy. I don't have a child who was born prematurely but two of my children do have issues that will be lifelong. They know what is 'wrong' and understand the implications in their lives.
Never forget the visit to a university based endocrinology clinic and the condescending resident turns to me and says 'do you know why you are here?"
At which point I turn to dd (8) and ask her :
"K, why don't you explain to the doctor why we are here."
and in her little tiny piping voice..
"My thyroid gland isn't working right so my brain keeps telling it to work harder and harder so it keeps trying but it just keeps getting bigger and bigger. so I'm going to need medicine to help my thyroid out and make my brain think its working right"
Not bad explanation of thyroiditis for an 8 yr old :-)

Aside from the 'my Asperger's made me do it' cop out, it has definitely been positive that my son knows about his AS.

You know I am not mother of the year. I make mistakes some pretty big ones but I can say with complete and total confidence I do NOT lie to my kids and as we come into the teen years that trust is a big issue.

Lisa - Mum to Mitch & Harry said...

I really apppreciated this post - it helped clarify a lot of issues for me. My twin boys are now 3 years old and their delays are becoming more evident to me (everyone else seems to suggest I worry too much!). But I want them to be informed, but not obsessed with their medical history. So at this stage I tell them they were born very early and were very tiny and the doctors and nurses helped them get strong to come home. As they grow I will give them age appropriate information so that they not only understand their hisotory, but are also able to understand why sometimes they struggle to keep up with their peers.
mum to Mitch & Harry