Feeling a bit lost in a "perfect" world
Do you ever get the feeling like you have a giant booger on your face or maybe forgot to put pants on before leaving the house? I do. I catch people staring or even gawking at us every. single. day. I'm not talking about short little covert glances, but big wide eyed "OMG, would you look at that family!" stares. There are days that I feel like we are the accident in the road and everyone is rubbernecking to get a peek at the gore.
Sometimes, it's for the sheer size of our family (which by Dugger's standards, we are kinda small). Other times, it's the "Down's" element. Many times, it's because one or more of the boys are doing something obnoxious, fighting with each other or being disrespectful to us (have you ever tried to rationalize with someone on the spectrum?). And wait, we can't forget Leo's pepperoni sized birthmark on his head because it definitely gets it's fair share of horrified looks.
Some think I'm being paranoid or over sensitive and maybe I am, but if you constantly feel the stares and catch people whispering or even pointing at your family, you get sick of it. You want it to stop. C'mon people, we are not a circus act.
Another thing that just kills me are the questions or comments. "Are they all yours?", "Where'd she come from?", "Does she have a little Down's?", "OMG, what happened to him?", "Are you done?", "Better you than me", "I could NEVER do what you do?", "Wow, you must be so patient.", "How much did it cost?", "Why is he/she doing that?", "God only gives you what you can handle" and the ever favorite "You sure have your hands full."
Or, they want me to diagnose their friend's friend's friend's child with autism because they act bad, weird or don't talk and they are 2. I know I should probably have an honorary PhD in diagnosing autism since I have 4 on the spectrum, but I've come to learn that most parents don't want to hear from their friend, sibling or friend's friend that there could possibly be something wrong with their child. I'll leave that conversation up to their pediatrician.
And you know the part from "Welcome to Holland" that says "But everyone you know is busy coming and going from Italy... and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."" Lately, I think this hits me the hardest. While we are immersed in the special education world with IEP's, guided study halls, and therapy, it's been bittersweet hearing about how so in so is picking colleges to apply to, or how their child is getting a C in something, or the 4 sports their kids are participating in this weekend that they have to watch, or what umpteenth birthday party their child's been invited to, etc. When I'm home doing our thing, I don't really think about it much, but when we are with friends, family or just making conversation with people, I realize how vastly different our world is to someone who's kids are considered typical. It's a hard reality and I try not to dwell on it, but lately the thoughts creep into my head a lot. Things people take for granted like boyfriends/girlfriends, college, jobs, driver licenses, marriage, children/pregnancy, FRIENDS. All these life experiences are expected by most, but may never ever happen for some of my kids. It's something I thought I'd come to terms with, but lately as the boys have gotten older I'm reminded how much harder it is for them to obtain things like a driver's license, college degree or even a job. I can't imagine how I'm going to feel when Lily and Dasha reach their teenage years. I need to rethink and recreate a new mindset so vastly different from what was my "normal" growing up that matches my kids abilities and wants. I need to be at peace with this so I can guide and help them be happy and successful in life no matter what comes their way.
Comments
You have a beautiful family!
I can't tell u how much I admire your family and all that you have done! You guys are truly amazing!
I have been a special Ed teacher in Pike for the last 13 years. I worked with students of almost every disability. In saying that, my hats off to you for the love and patience that you have for exceptional kids!
Looking forward to following your Blog!
Nikki (Berry) Brimer
That was beautifully written. You and Matt amaze me with the love that you give but, I would imagine that the love you give is overwhelming as well. Nothing worth doing in life is easy. You and your children are all blessed.
John Dishinger
I also agree with the part about being at home vs being out in public. At home, I don't even think about Beth having Down Syndrome. She's just Beth. But walking through the grocery store or at the mall, wow. Have they really NEVER seen a person with Down Syndrome before?!
It's hard when they become adults and their peers are doing all those 'normal' things: driving, dating, getting married. It hurts your child and it hurts you. But you'll find other things that they love to do and you'll fill their lives with those things. And life will be good.
Liz Herrin Carpenter
Thank you for sharing your feelings and thoughts. You are truly an inspirational and amazing example of love and strength! I look forward to reading more about you and your beautiful family.
I know my sister has always raved about what an incredible mom and friend you are. She never once mentioned that any of your children had any issues!
I thank you and Matt for giving the rest of us such a beautiful model of parenting, sacrifice and unconditional love!
Tanya