Hopefully, there are still a few of you out there that I didn’t scare off with my a-hole post over the weekend (just keepin’ it real, y’all!) If not, then I guess I’ll be hearing a lot of virtual crickets after this post, but I’m taking the chance, nonetheless, because I’ve got a job to do.
And I need your help.
A few months back, I was asked to speak to an Atlanta-area MOPS group about – what else? – special needs parenting. The demographics vary widely, but there are two things I know for certain: all of the attendees will be mothers, and they will have preschool-age children. I’ve had a number of ideas floating around in my head for awhile about what I would like to say, but I’m just now getting down to putting pen to paper (keyboard to Mac screen, but whatever…) It dawned on me this morning that what I need is some perspective. Perspective from people who look in on my life from the outside, but still know a thing or two about what it’s like to be me. Perspective from people who may have once thought I was a saint, or cursed, or – dare I say it? – special in some way, but have realized through this blog that I’m actually pretty ordinary. Perspective from people who are living the special needs parent lifestyle and see their own lives reflected in mine.
So, with that, I’ve got a few questions for you, my small-but-loyal band of readers. Answer anything you’re comfortable with answering from the list of questions below. You can put your answer in the comments, or if you prefer, email them directly to me at doubledoseofspecial@gmail.com. Brutal honesty is welcomed, but not required.
- Before you knew anyone with a special needs child, what did you think about parents of special needs children? Did you think our lives were tragic/sad/depressing, or something else?
- What about now? What is your impression of what it is like to be a parent of children with special needs?
- What, if anything, have you learned from reading my blog? What has made you stop and think?
- How has your attitude changed since reading my blog and/or meeting me or my children?
- If you are a parent or family member of a child with special needs, what are some things you would like moms of typical children to know?
- If you are a parent or family member of a child with special needs, what are some things you wish the world could see when they look at you, your child, or your family?
I'm not gonna be much help. I don't think of my self as a special needs mom. Lauren is so healthy, and doesn't need much assistance (yet). Yeah, we have an IEP meeting once a year which hasn't been so bad (so far). We go to dr spots once a year, no big deal. I'm just like any other mom.
Before having Lauren, I didn't think of the parents of the people with special needs. Now i do.
I love the way you explain things, so much better than i could ever do.
Moms of typical kids: my kid is just like yours.
World: Lauren is not contagious, nor is shr gross or retarded.
Also, you pretty much rock, Andi. You can tell them i said so 🙂
Great, thoughts, Beth! Thanks so much (for the compliment and the feedback)!
Just a couple thoughts as I've only just started reading your blog.
I never thought about parents of special needs children. It just never entered my stream of consciousness until I became one.
Now… now I think its amazing. I truly feel sorry for parents of "typical" kids because they miss out on being a part of this community… and when their kids do things, its not a big deal! Everything's a big deal in our house! 🙂
I am a special needs mama… I would like moms of typical children to know that they don't need to be scared of us or feel bad for us. I actually think we have it better than them! That said, there are plenty of days when I wish I was one of them.
I would like other mamas and all other people to see my BABY before they see Down syndrome. She is a person first. A baby. Not a syndrome. Don't feel sorry for her. She's already done more for so many more people in her 8 months of life than most 30 year olds I know.
* I am not sure I honestly ever really put much thought into the parents of the special needs children. I think the ones that caught my attention the most were older couples and wondering what kind of arrangements they were able to make for their children after their passing.
* I have mad respect for them because I know their lives aren't the easiest but they make it look so natural. I see being a special needs parent as a challenging job but one with so many rewards.
* Not to take the small stuff for granted. Every small step in a child's life is precious as each child's progress in life is unique and special in their own way.
* Prior to reading your blog and meeting you and your children I may have been more shy around special needs people. Maybe not making eye contact for fear of them thinking that I am staring when that isn't the case. Now I make sure to make eye contact and give them a big smile when I see them.
* Can I consider myself a family member now? 😉 Definitely not to take any experience with their child for granted.
* Just to be confident and if you have a question as it respectfully. If you do make contact don't look away with shame but put on a warm smile and you will be rewarded with one in return.
I come from a bit of a different background. My mother worked with people with special needs her whole career. Some had physical challenges, some mental challenges and some with both. I never gave much thought to their parents and I never thought too much about their special needs. They were just people who were different, just like we all are different. I think spending so much time with people with differences has made me see them as just people.
That being said, my son has Aspereger's Syndrome, a "hidden disability" so many people don't realize that he has special needs. Most of the time he acts and looks like everyone else, but but his behavior is immature for his age and he has a very difficult time with crowds and noise. I wish I knew a way to communicate to others in a simple way that I don't just have a bad or spoiled child. He is in sensory overload and is doing the best he can in some situations. I don't want to explain our situation to every stranger who gives me a dirty look.
Before Sophie was born, I thought that the parents of special needs children were super parents of somekind. To be such pillars of strength when faced such a monumental challenge. Now….I know…..that they are not any different than any other parent. They have simply been blessed to have been given the opportunity to parent a truly remarkable child!
I met you before I knew you had a special needs child (back at Convention!). You told me you had a daughter but her special needs didn't come up until later in our stay. You didn't really go much into it, and I'm always one who doesn't pry if people don't offer up a lot of information. I loved your stories about her and was really impressed when I started reading your running blog.
I recall being really, really happy for you when you announced you were pregnant with your little man. I found out about his Down's diagnosis from your Twitter, a couple days after you had him (I hadn't logged into FB). I do recall being sad for you and your family. I felt bad that I felt sad, because I've known lovely people with Down's, but I think my initial thought was "Really God? As if she hasn't been though enough?!"
One thing reading your blog has shown me is that you are NOT ordinary. Sure, day to day life is not nearly as glamorous as television shows and movies make it out to be, but your overall zest for life, your sense of humor, and mostly your faith make you one of the most inspiring people I know.
Before I knew people with special needs children (you are not the only one I know, a high school classmate has a son with Down's), I would say I felt/feel a tad sorry for them, because they face so many unique challenges that people of healthy children can't even imagine. I also always thought/think "Wow…they are a much better person than me."
Not sure if any of this helps, but I felt like being brutally honest in telling you that I think you're extraordinary. 🙂
Thank you so much to everyone who has responded here or by email (and if you haven't yet, feel free to do so!) This little exercise has been great for me, as I've heard from so many people with so many different perspectives. Be looking for a follow up post soon about what I've gleaned from my little survey.