Wednesday, October 8, 2008

"How Come...?"

When Paige starts a sentence with those 2 words I never know what's going to follow. I do know, however, that it will be something this is hurting her deeply.

"How come my legs work differently than other kids?"
"How come I have pain and the doctor didn't believe me?"
"How come I have OCD?"
"How come the kids don't want to be my friend?"
"How come I lived but other babies died?"

As soon as she started talking in full sentences, the "how come?" questions started. They are never simple ones either.

On Sunday, from the backseat, came another one, "How come I'm the kid who never gets invited to birthday parties?"

I tried to make her feel better, forgetting who I was dealing with in the backseat. "Oh honey, it is one of the drawbacks when you are homeschooled. You aren't around such a large group of kids like you are in public school."

It didn't work.

"But Mom, how come I wasn't invited to parties even when I was in public school?"

Without missing a beat hubby responded, "Ya know, as you get older the number of kids that get invited to parties gets smaller. When you are little the parties are big and the whole class gets invited. But when you are older you only invite a few of your best friends to your party."

"But how come I am NEVER invited?"

She then got sidetracked by her brother and the conversation was over.

For her.

Here we are, 3 days later and it's still eating me alive. She is right, she is never invited to parties.

This morning hubby and I were talking about it while he was getting dressed for work. When I asked, "How can I fix this?" he turned around and gave me "the look". No words needed.

22 comments:

thethomas said...

I am so glad I have your blog to navigate these issues before I have to deal with them. I read your post and it brought tears to my eyes b/c I know I will be having that same or similar conversation in a few years with my son. I know you/we all get busy but just so you know I really enjoy reading your posts and taking from them your experience b/c this road we preemie parents travel is a scary and lonely one.

christy

future of hope said...

I have two sons, both "non-conformers" ( sounds better than saying wierd kids, lol). The oldest is full-term, NDA, a junior in High School. He is also the one that just never "fits in". He truly isn't comfortable with the social structure around him, has no close friends and only a few friendly aquaintances. Mercifully he has never really been picked on - he has lucked out by being tall and good looking - the kids just sort of pass him by. He did very few birthday parties in the younger grades, and now skips all dances, dates, and group get togethers. When he is comfortable in his own skin he is bright, witty and engaging - for instance, my family would not be able to identify him from the definition that I gave above - they would say that I was crazy. This son KNOWS that it is his behavior that sets him apart, he KNOWS that he could be involved, if he could relax. I wouldn't have your "Paige Conversation" with him, because he would never ask. But I have had the "How can I fix this?" convo with hubby - funny, It ended just like yours!

My second son is my preemie. His social situation is so much more complex. He WANTS to be a social butterfly, was probably destined to be the *genius - class president - quarterback - captain of the football team - voted most likely to succeed* (lol, at least that is how he tells it!) He aches for the invitations that never come. The kids that shun him or baby him cut him to the quick. It is hard for many of them to get past the huge wheelchair, past the adult aide that is always hovering in school. And once they do then they have to contend with his attitude and volitile emotions, which time after time he fails to keep in check. With him I have had the "Why am I not invited?" conversations. I keep my answers honest, as much as they hurt. Sometimes the answer is "because they are going to X, or doing Y, and either the destination isn't accessible or the activity is physically beyond you." If that is the reason, it ticks him off, but he understands the logistics and we try to find a replacement activity. But sometimes the answer is simpler, but much harder to say. "You were not invited because the last time you played with "bob" you were rude and controlling - you spoke without thinking, and you hurt his feelings. You acted like a Know-it-all, and you made everyone uncomfortable with your behavior." I HATE giving that answer, but if he doesn't KNOW how he is perceived, then how can he work on improving his social skills? With this son I spend hours cuing, correcting, and role-playing. Thankfully his bubbly, friendly personality does shine through - and he does fairly well in calm, one to one situations. If there were just some magic switch on him to make him engage his brain before his mouth things would go much smoother!

ThePreemie Experiment said...

Thank you for your note Christy!

ThePreemie Experiment said...

future of hope wrote "But I have had the "How can I fix this?" convo with hubby - funny, It ended just like yours!"

My hubby has perfected that look. lol He doesn't even have to waste his breath anymore.

I can't help but want to "fix it". I hate that she feels so much agony over it.

future of hope also wrote: "But sometimes the answer is simpler, but much harder to say. "You were not invited because the last time you played with "bob" you were rude and controlling - you spoke without thinking, and you hurt his feelings. You acted like a Know-it-all, and you made everyone uncomfortable with your behavior." I HATE giving that answer, but if he doesn't KNOW how he is perceived, then how can he work on improving his social skills? With this son I spend hours cuing, correcting, and role-playing."

Paige also wants so desperately to be friends with everyone. She realizes it and it stings. But, her behavior is the cause of her not having a lot of friends. I too spend countless hours cuing, correcting and role-playing.

That's the hard part... she isn't able to correct her behavior to help her situation. She will come home from the neighbors house and tell me all about how mean the kids were to her. But, when I dig into the situation the truth is revealed. She has somehow brought it on. She simply isn't learning.

How long should we keep trying? Is there a point when we should be letting them figure it out themselves? And, I honestly wonder if she will ever "get it".

Sarah Blake said...

[hugs] I was never invited either, and it wasn't beccause of my behaviors.

Be honest and tell her it hurts you too. There are two elements to "How come?" There is the real, veyr serious wish for an answer--and sometimes you can give it and sometimes you can't. And there is the real need to just be comforted. Hold her. Cry with her.

And Paige is invited to a big party in May--it'll be a while to look forward to. [hugs]

future of hope said...

TPE wrote:How long should we keep trying? Is there a point when we should be letting them figure it out themselves? And, I honestly wonder if she will ever "get it".

I don't know - and I so wish I did........ I want my children to be happy - both of them. How much of my older child's disconnect can be traced to the life he has lead since the age of 5? How much more "fitting in" can my youngest do in a world that doesn't want him?

RhondaLue said...

I've had one (FT) that was also never invited to birthday parties...never...not ONE in all his gradeschool years. He doesn't display bad behavior but also was quiet and picked on for a couple of years. His teachers commented to me that he had friends but no BEST friend like most kids. When they had to write a paper about their best friend and what they do together he made something up. It broke my heart.

Fast forward..he's in 9th grade, very handsome, on the football team, still quiet but clever and funny when he does speak up. He's been invited to a few parties a year and seems comfortable with his school and friends. I prayed for this day till my knees hurt in elementary school.

The only solution I can think of is to tell her that you're sorry she didn't get invited to this party or that party but let's have our own get together and invite who YOU want.... It's so hard, we want so much to just fix it, to make the other kids like our kids.

As for my preemie (sorry for the novel here), he does get invited to a couple of parties/yr. He has friends and is fun and happy (meltdowns are for home only) but he has his preemie issues that I think make the PARENTS not want to have him over. He's got adhd and also the ever-embarrasing encopresis from chronic constipation that still isn't in check and he's 7 1/2 yrs old. It's a constant worry (and sometimes keeps us from letting him go to playdates) that he'll have bowel leakage at someone elses house. Not only would it be humiliating but no parents want to have a kid like that come over regularly. :(

Susie Korbel said...

Would the other children come, if Paige had a party? I don't know if they would return the consideration if they attended one of hers?

ThePreemie Experiment said...

Hi Susie,

From the time Paige turned 1 we had HUGE birthday parties for her. When she was tiny, the parties consisted of family and our friends. When she started school (at age 3) we invited every child from her class. The parties were really always very large. Lots of families, lots of kids, lots of fun.

Starting in first grade we started noticing that the number of classmates that were coming, was dwindling.

In 2nd grade we invited both 2nd grade classes-over 50 kids. Only about 20 showed up and most of those were the children of her teachers at school. It was a fun party. We rented out a roller skating rink. The kids talked about it for months.

In 3rd grade, as her birthday started approaching, kids started asking her if she was going to have a roller skating party again. Some of the kids who did the most asking weren't the ones who came the year before.

About a month before her 9th birthday (3rd grade) Paige came home from school and told me that the kids were telling her that they wouldn't like her anymore if she didn't have a roller skating party. She told me that she didn't want to have the party because they were being mean. So, we took her and a friend to Build-A-Bear (her most favorite place in the world) instead.

Even though she has had some major birthday bashes since we've moved to this state (almost 4 years now), she has never been invited to a single birthday party.

Her 10th birthday is only 1 month away. (when the heck did that happen?) Hubby and I decided that a trip to an indoor waterpark will be much more fun than having a party for kids who never return the favor.

ThePreemie Experiment said...

rhondalue wrote: "He has friends and is fun and happy (meltdowns are for home only) but he has his preemie issues that I think make the PARENTS not want to have him over. He's got adhd and also the ever-embarrasing encopresis from chronic constipation that still isn't in check and he's 7 1/2 yrs old. It's a constant worry (and sometimes keeps us from letting him go to playdates) that he'll have bowel leakage at someone elses house. Not only would it be humiliating but no parents want to have a kid like that come over regularly. :("

For years parents were understanding with Paige's issues. But, as she got older, the issues became so unacceptable that the emotions they felt towards us went from "oh those poor parents with all that they have to deal with" to "they just don't raise her right. she shouldn't be talking about such subjects".

Paige says what is on her mind. If someone mentions that so and so is having a baby, well Paige will say something like, "oh will it be a vaginal birth or a c-section?". If a parent is drinking a beer, Paige will turn to their child and say something like, "I can't believe your dad is drinking alcohol!" Oh and the ever favorite of mine, if someone mentions anything to do with god or religion Paige will make sure everyone in the room knows that we are atheist and then proceed to make faces.

So, I sure do understand where you are coming from Rhonda!

As for the encopresis... we've been there too. Have you tried PlumSmart juice by Sunsweet? Paige has a glass a day. She had been on some form of laxative since she was 1 year old. She is completely off of Miralax and all laxatives now. It took about 6 months for her muscles to shrink the leakage to stop.

ThePreemie Experiment said...

Sarah wrote: "And Paige is invited to a big party in May"

We'll be there Sarah!!

Anonymous said...

Helen Harrison writes...

There are times that Ed's degree of retardation and autism are actually advantageous.

He is too retarded to understand that he is different, and doesn't seem to suffer as result. He doesn't seem to miss human interaction.

I know we have had this discussion before on the blog, but sometimes a more severe disability is easier to cope with than the so-called "mild" problems of prematurity (Terri w/2 can certainly address that one!)

DH and I refer to Ed's social oblivion as "God's lobotomy."

Helen

Kyrsten said...

My mom was visiting today, and I shared the post with her. We three kids *all* had problems socially- like future of hope said, we were all "nonconformists." Mom said the pull to "fix" things for us was tremendous...

It was no consolation to us then, but generally by the time high school hit, we'd found our niche; I can honestly say that all of us developed lasting friendships with a select few (as versus so many of the superficial drama that dominates jr. high/h.s.).

I know, no consolation to me on my own 10th birthday, when so few invited kids came that the decision was made for no more kid parties.

I worry so much about Joshua experiencing any more pain than he already has--

Tough job, this parenting. I think I can honestly say that before I had preemies, I had not a bleeping clue just how hard it would be, right off the bat.

ThePreemie Experiment said...

Helen wrote: "I know we have had this discussion before on the blog, but sometimes a more severe disability is easier to cope with than the so-called "mild" problems of prematurity (Terri w/2 can certainly address that one!)"

I completely agree Helen. When you have a child who longs for normalcy, while fully understanding that they are struggling, it is hard to watch.

ThePreemie Experiment said...

Krysten wrote: "Tough job, this parenting. I think I can honestly say that before I had preemies, I had not a bleeping clue just how hard it would be, right off the bat."

I didn't have a clue either. And, now that I have a fairly typical child also, I look back at what we've been through and wonder how I have survived thus far!

Anonymous said...

Oh Stacy,

I have BTDT so many times for either myself or my kids! I'm dyslexic and it wasn't picked up until 14 so I was just the weird kid who got bullied and not invited :-( Makes me feel for my kids all the more - Thomas struggles with speech (recently developed a stammer to add to the communication problems!), Nicholas has ADHD and William Asperger's!

Nicholas is the social butterfly who wants to be loved and involved in everything - and always in your face and so can't understand when people need a break!

William wants to be friends but just doesn't have the foggiest idea of how to break into a group - he used to try to join ball games by throwing balls at people's heads and didn't understand how that could be mis-interpereted!

I have role-played, post mortemed, scripted, social storied etc for ever it seems. The last time the difficulties for William became really obvious was at a homeschool science show. William stood on the edges obviously desperate to get in but refusing to use any of my scripts, Nicholas was having a ball so he needed to be tempered a little, Thomas was in his 'I'm absolutely not eating and my energy levels are so low I can't cope with anything so I'm going to sit and cry' phase - and I had my husband there who had recently had foot surgery, was on crutches, in pain and tired!!

The only thing we've done - and maybe it's the easy way out - is to bring the parties to family and friends (usually of the family rather than kid friends)who 'get' the kid, 'get' our experience and differences and truely celebrate the kid for who they are and how far they've come!

Even these days and especially for William's 10th I had pictures of him through various stages over the years - inclunding NICU pictures and his first booties on a poster. First day, first time in his incubator,first cuddle, first clothes, first cot, first time home, first swim, swing, snow, haircut etc. It really showed how far he's come and his and our realities!

We escape a bit with Nicholas as his birthday is during the summer holiday shut down and people are often away!

Thomas, so far, doesn't care so long as there are people of some description and presents to rip open!

Eleanor

Kate K. said...
This comment has been removed by the author.
RhondaLue said...

"preemie experiment" wrote:

I completely agree Helen. When you have a child who longs for normalcy, while fully understanding that they are struggling, it is hard to watch.

I have to agree with this too. Sometimes, especially real bright kids have it even harder. They don't relate as well to their peers because of their "gifts (strenghts, whatever you want to call it) and then appear to be extra wierd by having all the disorders that our kids sometimes have.

My son asked me last night, "Mom, will I ever grow out of Adhd or will I have it forever like my reflux?" He can tell he's different. It's a daily challenge to appear patient even when I'm not feeling that way.

Oh and to answer your question, yep...he's been on miralax and plumsmart. They both work well...a little too well but still so much leakage. We went to the Dr for another issue this a.m. and we're going to try a more conservative miralax regimen and see if he can be in more of a "send to school" condition compared to hot it was before.

This stupid encopresis literally rules our life and our daily activities. ugh If it's not one thing (respiratory issues) then it's another (constipation and GI issues!)

Susie Korbel said...

Oh no, my comment was just eaten :P

I was saying that I am so sorry. Kids can be so cruel and it's sad.

I don't see anything wrong with kids saying what's on their mind, especially if they have something interesting/relevant to say. She's curious and intelligent and that is great.

Do you think Paige would like getting birthday cards from different places or would that be weird? I don't know if it would make her feel good to wake up to some birthday cards in the mail.

Anonymous said...

Regarding the role-play, scripted conversations, etc. - maybe Paige (and other kids) may be more receptive if the cues came from someone other than a parent? Is there maybe an older teen relative or family friend who could help her out? Speaking from personal experience, so much of what I learned about acceptable social behavior came from my older cousin, whom I absolutely idolized. Hearing the same things from my parents wouldn't have had the same effect.

One other thing to point out. Kids tend to want friends around them who are the same as they are. It will get worse (especially jr. high age!) before it gets better, but by the late teens, more people start to enjoy the company of someone who has had different life experiences. And of course by that age, Paige's more adult conversation will be a plus for her.

-Emily

Anonymous said...

Have you joined any local homeschool groups? Katie's had more socialization with homeschool group than with school. It's easier to be part of a group when age isn't as important as it is in school.

Laura

mom to lilike locke and anjeni said...

awwwwwww poor darling are there any other preemies she knows close by that might have a birthday party she could attend?