For the last 4-5 years I cannot count how many times I’ve heard this statement: I don’t know how you do it! This, of course, is in reference to parenting my daughter who has autism. I’m guilty of taking things personal some times, ok a lot of times, but every time I hear this I wonder what the person is thinking when they say it. Surely they have good intentions, but it always feels like one of those back handed compliments like “that outfit is so slimming on you” as in you probably should hit the gym or continue to wear clothing that masks your less than perfect body or “you look great with make up” as in you look like hell without it. Well, maybe I’m exaggerating just a tad, but I’ve never really understood the shock behind the fact that I am “able to do it”. My reply to that comment seems so obvious to me, yet even the sweetest person with the most genuine heart is still incapable of getting it.
I do it for the same reasons you do. I do it because I love my child and I’m a parent. There’s nothing more important to me than my family. When you have children, you love, cherish and take care of them, no matter what challenges there may be and no matter what their abilities. You do it because it is the only thing to do. So, if you have sincerely been trying to compliment me from the get go, I appreciate the love. Please understand though that I am just like you, wanting the best for my child and moving heaven and earth to make that happen for her.
Now as far as the other 900 things “I do” and trying to balance those with parenting in general, in addition to the challenges of autism, that comes as quite the challenge. Some days I feel like I’m on a roll, accomplishing more than I have in the last month and then other days I feel totally defeated. The truth is, I let a lot of things go because it is just impossible to do it all. Even now I’m trying to take things off my plate and say that difficult word NO more (of which I’m totally failing at). Then maybe I can catch up on more than my daughter’s first week of life in photo albums, finish unpacking and organizing my office (we moved almost two years ago), and perhaps more regularly shave my legs. In the meantime, I have wondered how my fellow autism moms juggle everything else on top of homework, therapy, activities, etc. Do they also put themselves last on the totem pole? I’m dying to know if they know how to say NO, you know?!?!
Kristi, one of my dearest friends, also has a child with autism. When I think of a mom that’s got it all together, I think of her. She amazes me! She is a mom to a 7 year old neurotypical son and a 10 year old son, who is also on the spectrum. We’re always talking about this crazy balancing act we are attempting and gently reminding each other to not take too much on. That’s why we thought it would be fun to team up in hopes of helping other autism moms and moms in general, who attempt doing it all! We hope you enjoy it and have a good laugh. If you read this and find yourself judging us, it’s all good. Legs will still go unshaven and teeth will still not be brushed at times. We are perfect in our imperfection.
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Kristi: So I hear that today is Special Mother’s Day. Happy Special Mother’s Day… I think?
Darlene: I should first say that I’m sure whomever came up with this idea had the best intentions. Personally I have mixed feelings about the use of the word special as it is. I mean, all people are special, aren’t they? We all have something about us that makes us uniquely different than anyone else in the world. As a mom of a child with autism, I don’t see myself anymore “special” than the next mom who has challenges. I have a lot of mom friends and I can’t think of one who hasn’t dealt with something that is difficult in their life. So while I appreciate the sentiment, I think I will stick to beIng just a run of the mill mommy who is doing the best job she can to raise her kids. We definitely have the hardest jobs in the world as parents and there’s nothing wrong with having a special day for that. I’m sure the good ‘ol, regular Mother’s Day has us covered.
Kristi: I agree, unless of course Special Mother’s Day suddenly grabs the attention of De Beers or Tiffany & Co. and they agree to corporate sponsorship. Okay question number two: What is the hardest part of your day and how do you deal with it?
Darlene: There’s really not just one part of my day that’s hard. It comes in waves. I would even say that some days it all seems like a breeze and I’m all “you got this girl.” I have this moment of relief like autism just left the building or something. Then a bad night of sleep and a change in teachers for the day causes your child to throw herself on the floor constantly, scream so loud the glass break alarm goes off, and repeat herself incessantly for the rest of the day. Now your anxiety level has been kicked up several notches, you have a pretty good idea of what the rest of the day has planned and you are just trying to survive until wine o’clock. Where do you struggle the most during the day, Kristi?
Kristi: You mean besides in the potty? Kidding! I really do need to hydrate better. Ok seriously, the second my kids get into the car after school my stress levels are through the roof. My “you got this girl” mood instantly turns into a “I wanna be a gone girl” one. On the other hand, I often find the hardest part to be the times they aren’t with me. This is when you’ll find me fumbling through my day trying to fit it* all in so that when they do come home, I can focus on them. Translation = go potty between the hours of 9 a.m. and 1:30 p.m., or else.
*it = exercising (I lie), cleaning, laundry-ing, food shopping, cleaning, volunteering, writing, helping out friends, cleaning, and of course, the dreaded cleaning.
Kristi: Do you feel ever feel like you are neglecting your (other) loved ones trying to balance it all? Please say yes.
Darlene: I definitely feel like I have neglected a lot of people and a lot things that I used to love to do. I live so much in the future and worrying about what it holds for my daughter. It’s hard to be present when you are in that place so much. My husband and I don’t get a lot of time alone and when we do we are exhausted. Our son spent a lot of time when he was really little being shuffled back and forth to therapies and even participating in them to help his sister. I wish things could be different for all of them, especially our daughter. I feel like I do the best I can to make sure everyone knows how much I love them, but I wonder the impact it will have down the line. I’m so focused on getting my kid all that she needs and being the best mom I can be, that everything else seems insignificant. I’ve gotten so much better about being intentional and present. That sometimes means letting things go and not everyone can appreciate that. We have a great life together and try to make a lot of great memories together. It’s just different and sometimes a bit more complicated than people realize, but whose life isn’t, really? How are you juggling your family, friends and everything else on your plate?
Kristi: It’s a constant struggle. My real secret is that I don’t sleep. Don’t hate. At the very least, I am rarely still. Oh and I don’t watch T.V. either, with the exception of a little HGTV or Access Hollywood on the DVR (but rarely a full show). Sad, right? The truth is that I would probably be bored if I had less on my plate. I do make it a priority to carve out time for friends, which is the best recharge.
Kristi: Please tell me that you too love to hate social media.
Darlene: Some parts of social media have become necessary for my business, but aside from my obsession with photography it is a love/hate relationship. I know that we’re just watching the highlights of a life and that everyone has their struggles they aren’t posting there, but some people’s lives just look like a walk in the park. It almost feels like they have more freedom to go wherever they want and do whatever they want. There is definitely a loss of that in so many aspects of your life, when you go through what we and so many others have. Sometimes social media is a constant reminder of that, but in the real world, there are so many people dealing with way harder stuff than this.
We find ways to have a lot of fun and sometimes in comes in the form of road trips with our kids in our minivan, making PB&Js, singing songs and playing travel bingo. It’s not luxurious, but we wouldn’t trade it for the world. I do post those pictures on IG and send them through to FB, so take that highlight reel! All joking aside, I really love Instagram and all the beautiful photography I get to indulge in there. I’m just an amateur photog, but taking pictures really puts me in my happy place and gives me a creative outlet. I did one of those photo a day challenges for two years and I have to say, I really enjoyed it and it was a huge stress relief for me. What’s your beef with social media? P.S. We need to get better about taking pictures. Some crazy selfies are in order.
Kristi: Selfies- yes! Is that done on #Sundays or is that day reserved for #funday? Help! I really have no “beef,” other than the fact that I’ve realized that keeping up with social media (not to be confused with Keeping Up With The Kardashians) can be a full time job. Shit, I can’t even commit to waxing! I rely heavily on local support for my charity, so I work hard (and maybe not smart) to build Facebook engagement. Instagram has become my evening treat, because I sometimes participate in Fat Mum Slim’s Photo a Day. I have you to thank for turning me on to FMS, and I challenge everyone to try it! Twitter gives me a #headache, although I get that its power is immeasurable. I don’t anticipate anything I have to say will demand a worldwide audience anytime soon so I am in no huge hurry to build a Twitter following. J.R. is though. LOL!
I’m not a fan either of how social media can make one feel, but for a more ridiculous reason. We all can see what friends/followers like, share, retweet, etc. and doesn’t sit well with me when certain ones “selectively” do so. In other words if a person doesn’t note certain posts, my mind races. Did this person not approve of my “fun” or “fortune” or who I am having said fun with? I mean seriously, I have a kid with autism. Please “like” the fact that I applied mascara today! It’s not a competition, I swear! And I often don’t know who I am embarrassed for more- the person who knows everything I am up to but pretends not to, or for myself and the fact that I am even giving this a second thought. In the end, I think both parties need to understand that posts are (like you said) mere snapshots, and rarely ever reflect real life. And let’s not forget the fact that I am uber-sensitive person to begin with. Speaking of real life, what is your go to stress reliever?
Darlene: Who’s stressed? Lol! I would say my go-to stress reliever would be a good book and a coffee or a glass of wine. If I have lots of time, I love taking photographs and writing. These days anxiety has caused me to cut out my favorite beverages so I’m left to read, write, take pictures and drink lots of water. You?
Kristi: Sometimes just getting fresh air helps. On weekends that we don’t have many plans and I start to feel cooped up, I simply sit outside. And sip a simple vodka tonic. Or four. My final and BURNING QUESTION for you Darlene is this: How do you have time to do all of those amazing crafts with your kids? The mere thought of trolling Pinterest for ideas for crafts makes me lightheaded.
Darlene: Pinterest is overwhelming, but every now and then I find something easy the kids and I can make together. It’s really nice when it can be something we create that becomes a part of our home. I follow a lot of blogs and I sometimes get inspiration from all those fab DIYers out there. When you are the one woman mommy summer camp, you will search high and low for projects that you can make last several days. I feel like I need to come over there with my glue gun and glitter and get you rolling. I make a mean set of glitter pumpkins. It’s practically Thanksgiving. You up for it? I’ll pour the wine and watch you drink.
Kristi: Deal!
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Kristi Vannatta is a mom to two boys, ages seven and ten, and also lives in South Florida. Her blog, Write On!, focuses on her life with her ten-year-old son with autism. In her infinite spare time (ha!) she runs Puzzle Peace Now, a charity that raises money to send children with autism to summer camp.
Darlene Giol lives in South Florida and is a mom of a four-year-old son and a six-year-old daughter. She mentors and leads a team of business owners across the country. When she can, she shares her stories of finding peace through raising a daughter with autism on her blog The Peace To My Puzzle.
Hey there Darlene and Kristi!!! Just read (well, skimmed, I’m doing cleaning/laundering too!!) this blog and I LOVE it! Good on ya both!! So happy you ladies are speaking out about autism and its daily struggles! I, too, have a teenage boy with autism and I hate when I get those ‘Oh, poor you” looks from people! I would not change him…he is who he is….warts and all! And I love him. I also cherish my Saturday night church nights and sit-on-the-couch-and-talk-crap with my best friend afterwards, NIGHTS! Its how I unwind. Yes, I have to get back to working out, I sorta forgot I am a BeachBody coach…whoops!
Love the post! Your intro is spot on, and your writing is terrific. P.S. What did you get for Special Mother’s Day? I am still waiting for that call from DeBeers. XO
Thanks for sharing! Social media and blogging can be such a crazy experience. I’m grateful that it keeps me in touch with friends like you. Yet, I do think it impacts us and our thoughts in many ways. I get the same “I don’t know how you do/did it” reaction to my choice to homeschool our kids, and before that, about the NICU experience with them being 3 months early. The first one is a choice so it is admittedly different. The latter case was, “I didn’t have a choice.” At least not any alternative that I would consider… like checking out… if you know what I mean. Living la vida loca?! I sure hope and imagine that you know how fortunate your daughter and family are to have YOU. My autistic cousin was not as fortunate and had an immediate family that didn’t know what to do and therefore, didn’t do anything “special”. Some people find a way to manage, some, unfortunately, don’t. Some even seem to find a way to move mountains. I don’t know what the magic factors are, but I know that Grace has some of that magic kind of love, strength, and effort in your family. xoxoxo