米国マルファン症候群患者団体The Marfan Foundationからの情報を中心に、マルファン症候群や関連疾患についての海外情報を翻訳して発信します。


Children with Marfan, Loeys-Dietz, and VEDS: More than Medicine




What is the most important thing to consider when raising children with Marfan or Loeys-Dietz or vEDS?



Mark, you want to go.     



What's the most important thing? I don't know. I mean, tonight, I, first of all, as a psychologist I hate absolutes as I've already kind of mentioned. I live in the grays so you're gonna, this is a really hard question but... 



Okay, so let me just start with this by saying parents don't want gray. Parents want to know black and white, so...



I'm not dancing for parents now. What I would say most important, it kind of echoes a little bit of what I was saying it really I, again, I kind of think of this as like kind of going back to we all have our gene differences. Yeah, we all have our strengths and weaknesses. I, I often make this kind of statement and joke no matter if it's a child with Marfan syndrome or whomever I'm testing, you know, if you flip the chairs around I wouldn't do gray across all those tests. I know that, like I'm very certain of that. 



So really kind of, again it's kind of the these, these two concepts which I think are really one and the same. This kind of growth mindset and grit, which are essentially they kind of are in line with those stoic quotes, which is it's not so much how you experience life if things come easy, if things are hard. It's kind of how you respond to those difficulties or respond to the hardships whether it's psychological, academic, whatever. 



And so kind of taking those opportunities as learning opportunities or using your differences as strengths in any ways you can. I think is one of the, I'll call that the most important thing.






So there's, there's no prescription, Mark, that you're gonna say this is what you have to do. 



Come back for part two. 



And so here's so I'm going to tell you this. Not only as a child and adolescent psychiatrist, neuroscientist, but as a parent of three kids now who are in their 30s. 



And the whole concept of strengths and challenges is so super important. You want to try to do whatever you can to enhance strengths, not just take them for granted but enhance them because oftentimes strengths can be compensatory for, for the weaknesses or the challenges. 



And the other thing I would say is pay as much attention as you possibly can to when your kids are doing what you, what you want them to do. So sometimes it's really hard to get this concept across so if your kid is argumentative, you know, they're resistant, they don't want to go to the doctor, they don't want to go to school, you know, you try and catch them in alternative behaviors, alternative, you know, to what you don't want to see and pay a lot of attention to that because parental attention is, is the, you know, is the currency of developmental growth and try to ignore as much as possible those things that are occurring that are not very developmentally appropriate or are problems because, again, you can inadvertently pay attention to things because it attracts your attention because it's negative or attention seeking but in, in the end you're actually reinforcing the behavior that you don't want to see. 



So enhance the positive, enhance the strengths, develop compensatory skills, catch your kid doing what you want them to do and pay a lot of attention to it. That's my formula.



I love that. I love that. 



The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.

The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。