Ahhh, the dreaded “How is Caden doing?” question. It seems simple enough doesn’t it? I get this question nearly every day and it’s difficult to answer. Anyone who reads this blog knows how Caden is doing, knows about his Dr.’s appointments, what is happening. I realize that most people ask the question to be polite, that they ask and expect to hear the answer “fine!”, “great” and so forth. The media has done such a disservice to premature children. Every story you hear is positive, every story is about a 23 weeker surviving with minimal problems. About babies who don’t even weigh a pound going home with their families. There’s a hard truth out there that most don’t want to hear or accept.
For all the success stories you hear, I promise that the majority of these children born extremely premature are struggling. I can’t tell you how many stories I was overwhelmed with while Caden was in the NICU of success, of kids who were “perfectly fine”. Only another preemie parent can understand how isolating it is to have a child such as this. Only they can understand how hard it is to repeat a medical history several times a month to various doctors. To have to struggle with the question “how is he/she doing?” The long-term effects of these children are many and I really have to wonder if people like to gloss over them as it’s too hard to hear the truth. To understand the emotional toll it takes on the parents and the child. Too many preemie parents put up a brave face, or use the standard answer of “fine”.
Nearly 45% of children born under 27 weeks are severely handicapped. Additional serious handicaps do not emerge until school age. Being a preemie parent does not stop when a child comes home from the hospital or when a child turns 2 and “catches up” as they say. Even with my daughter Genevieve who is now 6 and a former 32 weeker, we see effects of her prematurity. Her fine motor and gross motor skills are behind and probably always will be.
So why all the doom and gloom? Parent/Teacher conference if you can guess. Genevieve did perfect academically. Socially she is struggling. A lot. She always has. Well, being a mom, I of course knew that there was an underlying problem to this. Gena is very smart, there’s GOT to be a reason she’s struggling in this area. Then I went to a blog I visit frequently called the Preemie Experiment and was blown away by a post that describes Genevieve PERFECTLY:
Nonverbal Learning Disability
* Above average reading skills. They are often early readers.
* Above average language skills.
* Above average rote memory.
* Socially they struggle because they are not able to understand non verbal communication.
* NLD kids have difficulty in reasoning skills.
* Difficulty with visual and spatial functioning. (As well as they don’t understand personal space.)
* Poor handwriting skills.
* Problems with balance and coordination.
* Problems with dressing themselves.
* Very literal thinking. (Perfect example of this would be when last week they were asked in school to draw what they would be in 100 years. Others in the class drew themselves on the moon, or as astronauts, or floating in cars… Genevieve drew herself as dead. Seriously. She had a gravestone that said RIP and at first… while I was a bit disturbed… it was true! In 100 years she probably will be dead!)
So I have some information now to go back to her teachers with. The problem with NLD children is that they need such extreme structure. They can get overwhelmed very easy because they pay attention to so much detail. So tomorrow I begin my search to help Gena. I know that she will need some specialist of some kind. We knew that she had a visual perception problem from the testing we had in Colorado with her. But hopefully this will be the help she needs!
February 22nd, 2008 at 1:42 am
Hi again. I commented on an earlier post. Yea!! I am so glad to hear another mom of a preemie voice these thoughts and feelings. You are right. A lot of people just don’t understand that it doesn’t end. And there is nothing I hate more than telling my daughter’s medical history a million times over and over. *sigh*. I’m glad that you have some info. to go back to her teachers with. I hope they listen and take it seriously. Best of luck to you!
February 22nd, 2008 at 8:39 am
I am so happy to read that you were helped by information on my blog. Please let us all know how it goes after you talk to the teacher. I hope you have better luck than I did. I think we will be homeschooling this coming year.
February 22nd, 2008 at 11:39 am
Katie and Stacy,
Thank you so much for your responses. It’s so good to hear other parents who have the same struggles. Stacy, your blog has been an invaluable resource for myself and other preemie moms. I actually lost the name of it for a while and while searching under “preemie personal space” your blog came up again while I was looking for information for my daughter.
February 22nd, 2008 at 12:31 pm
I’m so sorry, I’m sure it must be difficult to explain to people the emotional and physical toll a premature baby can take on Mommy and the whole family. I am glad you post information about Caden on your blog so I can know, at least a little, how he is doing. Non of my children were premature, so I really do not know how difficult it is-Kyara, however, was born with several medical problems (most of which every Dr would say, “are you sure she wasn’t premature, this normally only happens in premature babies), so I understand repeating 10 page long medical histories at every Dr’s appointment and not know what to say to people when they ask “How is she doing?” I hope you can find the answers you need for Gena and that the teachers and school will work with you to help her. Best of luck and let us know how things go.
February 22nd, 2008 at 1:02 pm
Andrea,
I would never underestimate what another child is going through medically or say that my children are any more difficult then what another parent goes through. I promise I’m not trying to be humble here but my heart goes out to parents who are navigating this medical field. Caden has other medical concerns outside of prematurity (clearly, with a cleft lip/palate!) and even before this with my daughter’s asthma… it’s scary. I’ve always read that the most difficult things to go through are divorce, death, moving, etc. I firmly believe that a child with medical problems is more stressful and draining then nearly anything else. The helplessness that you feel. How lost you are trying to interpret their symptoms, is it something this time? Is it nothing? When should I be concerned? What’s this going to be long-term? Does it get worse or better? They seem to be universal questions and concerns for all parents who’s children have medical problems.
While I might single out preemies on this blog, because hey… experience talking here…
February 22nd, 2008 at 1:42 pm
I agree, I think the stress of a sick child has got to be the most stressful and emotionally draining thing a person can go through. You’re such a good mom, Daniel is always talking about the many things you do for and with your children. Heavenly Father knew you could handle it all. Good luck.
February 22nd, 2008 at 1:51 pm
I hope you don’t think I am asking how Caden is doing just to be polite. I am truly interested in my grandchildren’s progress and how they are seriously doing as well as how Tamii is doing and coping with everything. I get to see the stress on your faces and feel it in your home. I love my kids more than words will ever be able to tell as do all parents and we are truly concerned for them and their families.
The internet is such a wonderful thing! You can find out so much information, and what a blessing that you have other mothers that you can talk to and know their frustrations and concerns—-AND how much you learn from each other.
We LOVE you!
August 22nd, 2008 at 4:06 pm
hi — well i am the mom of a preemie who is now 19 yrs. old; she was born at 28 weeks and was 2 lbs. 9 oz. At the start, her lungs were almost completely developed; she only needed oxygen the 1st nite after birth. she was kept in the neonatal ctr. for 3 mos., came home on a heart rate monitor for a week or 2 and has been fine ever since. she is now entering her 2nd year of college and is doing VERY well in school. throughout high school she was on the dance team, so is VERY coordinated physically. so my experience has been that she HAS caught up and is doing very well (thank GOD; i am blessed!) the only thing i can say that is unusual for someone her age is that she is not very sociable with her peers. she doesn’t care much for friends of either sex; is mainly friendly with a girl cousin her age and is content to see mainly her. this may just be her personality.
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