Tuesday, January 31, 2012

What questions should you ask?

Our friend asked us to post what is good and bad to say to parents with children with special needs. So here it goes!

With Jaxson, I am happy to tell people pretty much anything they want to know about him. Of course, that's not the same for every parent, but most of my friends say they are happy to answer questions. I would much rather have you come up and talk to me or ask me a question than sit and stare at my child.
The biggest thing I hate is when a curious child walks up to Jax and and stares, or asks "whats that," and the parent hurriedly grabs their child and pulls them away, apologizing. Children are honest, and not afraid to ask the difficult questions. It does not offend me when a child does this. I would love nothing more than to educate a child, to explain to that child what he has and why he has the tubes. Usually they are quite intrigued!
There really isn't a bad question that I can think of. I'm not even offended if people ask me what Jax life expectancy is. Of course, no one knows for sure when their time is up, but it doesn't make me angry that people are curious about that.

I don't like when people tell me they are sorry. Sorry for what? This beautiful baby boy that I wouldn't change for the world? I also don't really like when people say, "how do you do it?"
Uh, do I have any other choice? I love taking care of Jax. This is what I did for 12 hours, 3 days a week, for five years up until he was born. Not only is it spending time with my son, its doing what I love! Not everyone loves it like I do. But we can't leave our child on the street. They were given to us, and it is our job to do everything for them to keep them healthy and happy.

Little Miss, what do I say about this crazy beauty?
I have had a few people talk to me about her having DS if they also have a child with DS, or work with kids with special needs.
Other than that, no one has ever said anything. Not a thing. I'm pretty sure it's obvious she sports the extra chromosome. From her itty bitty nose, to her beautiful almond eyes. My hope is that people do know, but it just doesn't matter! They see she is a funny toddler, and she usually has people laughing or wanting to tickle that little budha belly!
Of course I would also be happy to answer any questions about her. Like what age she did things, and what she may have trouble with.

It's interesting to have two totally different perspectives. Jax doesn't just have a Down syndrome diagnosis. He also has a cerebral palsy diagnosis.
This can be a touchy subject for some people. For me, it is what it is, and I'm just happy that I found the world of blogging. It has brought me so much closer to not only Down syndrome families, but families with children with other disabilities, which I needed with a child like Jax. In the year after Jax's brain injury, I had a really hard time going to our local Down syndrome parties. I felt sorry for my poor child that would have had a much different life, if not for someone's mistake. Online I've been able to find other families with children more like Jax, and know that he's not the only one!

*Jax has his cardiology appointment tomorrow, and I'm a nervous wreck! After 6 years with a cardiology team that I didn't feel knew what they were doing, I have this horrible worry that this new cardiologist will find a bunch of stuff that is wrong or wasn't fixed right! Think happy heart thoughts tomorrow!


dannette said...

I love this post! Today I took Meya to Walmart and we went through the toy section - she did her usual hissy fit about wanting something, so we got stared at - probably me the mean mom with the little girl in the wheelchair just a bawling. I of course know Meya's cries and knew it was a 5 yr old having a hissy fit, but a kind little lady said - "she has a hard life it's ok if she cries". You know I never really thought about Meya having a hard life - different maybe due to her cerebral palsy, but hard? Anyways, I too welcome questions and any way to educate people. And I choose to believe that Meya has a pretty typical life and one where she is our princess and love of our lives.

To Love Endlessly said...

love, love, LOVE this post. I HATE when parents tell their kids to stay away. I have to be honest...when I was a kid I was at an amusement park with my aunt and uncle. i saw a group of individuals with special needs and I remember just looking at them, not being rude just looking and being a curious kid (I was pretty young, probably 6 or so and I STILL remember this). I remember my aunt yelling at me to not stare. I wasn't staring to be mean, but I was just a curious kid and I still (to this day) feel like those are the types of comments from adults that teach us that different isn't ok. My aunt could've just as easily walked over with me to talk to the group. Anyway, long comment, but I thought I'd share...

Unknown said...

yeah for educating!! love it...honest to the point! yeah! I hope people can google and find this post and help them understand! smiles

Tia said...

For me, it is please don't ask "what's wrong with her?" - nothing's wrong, she's perfect but just a little different.

I loathe the "I'm so sorry/what a burden/you're such a saint/I do t know how you do it" comments, especially when they are said in front of my precious, beautiful, chosen girls. They don't need to keep hearing how they must make my life so difficult or how hard it must be to parent them.

I do like - cool wheelchair, how does that switch work, could you explain that tube to my child. Oh, but I don't like it when people tell my daughter in her power chair they wish they had one - she wishes she could walk and you're just rubbing it in.

I'm a grump and a grouch me! But yes, please let your children come up and ask - and let me give the explanation, don't pull them away saying my girls are poorly. They aren't!

Sandryte said...

Thank you for the post and commenters for the comments! I will definitely reach out more when I see a family with CP child or other disability (till now I was too afraid to say something inapropriate). Thank God he gave a child with DS, so I am kind of on the same side of frontline now and can talk on the same "level" :)

Jenni said...

Seriously, I want to scoop up Little Miss and give her a squeeze! How cute is she??!!

kim said...

I hope you are just busy, but i am worried that you havent posted about Jaxsons cardio check up...
give him a kiss for me
Kim, WillS Mom

Anonymous said...

I read this post and the comments and still come away feeling nervous. It seems that what offends some does not offend others. I honestly would not want to upset any parent by what I say or don't say. I worry that I can never get it right.

April Vernon said...

I read this the other day, and didn't comment so now I'm back because I wanted you to know how much I appreciate your thoughts. I am going to be a guest blogger in a weeks or two at Far Above Rubies and was asked to write about how to handle comments and reactions from others.

April Vernon said...

I met a woman on fb who had a prenatal diagnosis and answered some breastfeeding questions she had long before her baby was born. He is now 3 weeks old and an immediate family member asked her, "Do they still think he's retarded" while the baby was in the NICU. That family member has never come to see the baby. Breaks my heart. I have dealt with well-meaning people that have words that don't come out right but have never had to deal with stuff like she is dealing with :(