Glass Children

[LNN]

This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible.

 

In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind

 

http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re

[SSS]

It's an interesting topic- I did not watch the video, as I am next to PANS child,

 

who has a younger sister who by all means is not looked through- I find the opposite- the neurotypical girl is more outgoing, engaging, and often commands the attention in the room with this charming nature,

 

while the anxious pans child floats in the background - relative adults a bit unsure how to approach her, or if she wants to be-

 

I have 3 kids, and it is a dance. Ironically, it is my oldest, straight A accomplished son I have had to concentrate on lately with 'growing up' pains. Just this year he joined an activity I insisted on driving him to and from every day, just so I can get alone time in the car with him- which had become almost rare. It means a lot to me, to just be alone with him.

I do think we expected more from him, simply because he gave us higher standards- and the age difference played a role, too.

 

It goes by very fast- hug each one, and let them each know how much they are loved.

[MomWithOCDSon]

We only have one, so we don't run the risk of another child feeling short-changed by all the attention necessarily lavished on DS. Still, I can vouch for the importance of having other adults in the mix, for sure. "It takes a village!"

 

There've been times when DS struggled with his self-esteem, and his answer to me or DH would be something along the lines of, "But you HAVE to think I'm smart! I'm your kid!" So it has been key that, along this journey, DS has found other grown-ups, usually teachers or a counselor, who encouraged him, saw his gifts through all the PANDAS garbage, and validated him in a way that his parents couldn't (mostly because he wouldn't let us).

 

ION (In Other News) - I love TED! Thanks, LLM!

[filinha1]

This is a great reminder that all kids benefit so much from regular interaction with caring adults other than their parents. One of my aunts told me a story about being at her eldest son's college graduation party. She said she had numerous conversations with friends of his who kept telling her what a great sense of humor her son had and that he was easily the funniest guy in the class. She reported being stunned that her 'shy and quiet' son was the same guy his friends described; 'I just couldn't believe it', she said. It's so easy for kids to get typecast in a role determined by their immediate family - the 'good' one, the 'smart' one, the 'athletic' one, the 'ill' one.

 

Sometimes the kindest thing we can do is to release them into the custody of people who allow them to express the fullness of their minds and spirits and to break loose from our loving chains.

 

Heather

[T_Anna]

Thanks so much for writing this. My middle son, 12, (non pandas) has been getting really annoyed with his brother lately. Example: "Why can't he just get up and take a shower?!!!" His grandpa took him out yesterday, and he went to the gym with his father later in the evening. These other kids definitely need more "time ins" (as opposed to "time outs"). Both nop Pandas kids (DS12 and DD9) have gotten irritated by people in school and their friends asking about DS14.

 

Thanks again.

T.Anna

[kimballot]

Yes... this illness affects the entire family. This video has GREAT ideas.

[dcmom]

LLM-

 

thank you for this! Since I have two pandas kids, I have worried less about how each of them is dealing with the other's illness..... However the timing of your post is excellent for me. My younger dd has been mildly symptomatic for months and months, her older sister symptom free for almost 2 years. Lately, the older sister has had a couple of emotional moments- and I think it is because of this reason. Things are good- but occasionally the little one does cause issues- and I realize now, that while it is sometimes hard for me to deal with (be patient, have compassion, etc)- when I listen to the talk and realize my older dd is dealing with all of the same issues- but with the tools of a twelve year old- I realize I have more work to do.

 

Thank you!

[smartyjones]

so LLM -- yesterday, i went back to search your posts b/c i wanted the recent Ross Greene lecture b/c ds11 had some trouble in school, (last month art and this month music! -- my literal child who struggles in the 'fun' classes) the VP told him to write out what he saw as problems in this situation. and the behavior tech who actually worked with him brushed that off as "excuses" for not being able to control himself. . . .

 

anyway, i noticed you had 2,500 posts -- did balloons drop from your ceiling and anyone arrive at your house with a cake and a trip to Disneyworld?

 

i am truly grateful for all your posts!! thank you!!

[LNN]

OMG - I so need to get a life! No balloons, certainly no one offering me a vacation! I've at times had to eat crow but not cake. Sheila did send me a medal (vie email graphic) for being a smarty pants the other day, but it was in response to the video, not because I had reached such a "milestone" in dweebness.

 

Sorry about the behavior tech - that's the kind of response that makes you secretly pray that she (or he) ends up having to raise a challenging child just so they can have one of those "OMG I had no idea!" moments they so need and deserve. I sometimes think maybe I should start a side business where I sell voodoo dolls - one dressed as a principal/teacher, one as a doctor, one as an in-law. They'd come with a dozen hat pins so you could inflict vicarious pains to pay them back for the very real headaches they brought to your life.

 

DCMom - like you, I once worried about one child suffering the consequences of being the "healthy" child and not getting as much attention. But the universe balanced things out, conspired to bless her with issues of her own, and now, she's right there in the thick of things, demanding her fair share of attention. Oh joy!

As I might have told you or you might have guessed from recent posts, DS has been dealing with some subclinical OCD for about 7 weeks. Testing for yeast today. But saw the LLMD yesterday and he's having us try some stuff. If it works, I'll be sure to let you know. Sometimes I think that just when we start to think the finish line is in sight, we're dealt these setbacks to keep us humble and not take things for granted.

[cobbiemommy]

I can so relate to this article. I have a very talented 16 DD who has enormous athletic potential as a basketball/softball player and a 13 DS who has Lyme/Pandas. I once told my daughter (by mistake), that if I could devote as much time coaching her as I do researching PANS that she could be an Olympic athlete. Her response, "Why don't you?" Mine, "I would be dead from all of it!" It is hard to balance all of this. She feels neglected, despite the fact that I go to every home and away game and every activity that she participates in! My son feels like he is slighted in the spotlight because she is such a good athlete and is an officer in FFA and an A student. He really struggles for good grades because of processing issues. They finally have a little common ground in that they are both in band.

 

I need the wisdom of Solomon to navigate the situation. I think we all walk the fine line of being the parent our children need.