If you’ve been blogging or reading blogs for a couple of years and you surf blogs to find new ones you might identify with you’ve probably stumbled across Love That Max by Ellen Seidman. The focus of her blog, she says, is inspiration and irreverence for parents raising kids with special needs. She’s got a powerful voice in the special needs genre and we’re delighted to profile her today to round out our relationships week – focusing on their family dynamics and relationships.
Ellen is mom to Max, 7 and Sabrina, 5. She’s married to Dave (the most patient guy EVER invented, she says). She’s been blogging since October 2008 and was thinking about it a year before, saying “I excel at procrastination.” For her (paying, day) job she’s freelance magazine editor/writer, professional snacker.
Enjoy getting to know Ellen as much as I have…
One of the things I love about your blog is how you write about the good and bad, I’m especially impressed when you write about a (special needs) parenting realization (a particular recent one was the one about Max wearing bibs in public)…have you always been so open on your blog? Or did that candidness evolve?
When I started the blog, I decided I was going to air it all. I needed to get stuff off my chest, yes, but I also wanted other parents to know they are not alone…and that they shouldn’t ever be ashamed to feel the way they do.
One of our recent focuses was about fun. I’d love to hear about how your family might alter your vacations to accommodate Max…if you do alter them at all.
If we’re going to a place that has a day camp, I’ll call ahead and make sure they know about Max’s needs. Right now, though, our vacations are all about accommodating BOTH kids, and making sure they have a good time! I can’t wait till they’re older and we can take them to places that don’t involve cartoon characters and princesses.
Can you recap some of the wonderful things people did to make your recent vacation great and how people made Max feel special?
Mostly, people were just incredibly kind. If Max was on a ride and didn’t want to get off, the operator let him go around again…and again and again. s The woman at the miniature golf course let him do it free. And a guy at the place we were staying even handed him a slice of pizza out of the box. Max charms people! Maybe he’ll be a politician when he grows up.
Would you talk about inclusion for Max and what that means in his daily life?
Max attends a school for kids with special needs. In other aspects of his life, I do my best to include him in typical-kid activities, whether it’s assisting him at a playground or encouraging him to show another kid how the speech app on his new iPad works.
Any words of wisdom you’d like to share with parents with younger kids with special needs? Particularly if it involves how to stay focused on weaving fun into our everyday lives (especially when the days seem long and seem to be the same (hard) day over and over.
During the early years with Max, my life wasn’t nearly as much fun. Not just because he needed so much more care; I was always so worried about him. The worry consumed me. In retrospect, I wish I would have made more play dates, both with friends and with other moms of kids with special needs. Going to places wasn’t always so easy with Max, because he was sensitive to crowds and loud noises, but if your child doesn’t have issues like that, get out there! Find museum exhibits to go to, kid play spaces, whatever. It’s good for both of you. Oh, and don’t put so much pressure on yourself to keep doing therapeutic stuff with your kids. Don’t worry that playtime always has to be “therapy” time. Try to relax. Be silly. Make up nonsense songs. Put on a CD and dance around with your kid. It’s all good.
In what way did the dynamics change with extended family members because you had a child with special needs? What are the challenges and what were you pleasantly surprised about?
I have to say, after I had Max I got even closer with my sister. We have such different personalities that we were never best friends, but I can’t even begin to tell you how much she was there for me after Max was born. My mom (whose always been the most good-hearted person I know) and my sister would come visit on weekends and take care of Max, house stuff, you name it. They’d bring me little treats and presents. They’d tell me to leave the house and go take some time for myself. Oh, and they’d gush and gush about how cute Max was, which was incredibly uplifting during a very hard time in my life. I knew he was delicious, but I was so consumed with anxiety about his future that I’d forget to just enjoy my baby.
The hardest part was dealing with one relative who just didn’t GET what it meant to have a kid with special needs, and still doesn’t. This is the same relative who, mind you, said these awful words at the hospital as she stared at Max lying in an incubator: “MY children weren’t like that.” OMG. This relative has never gone out of her way to help Max or me. Maddening. But, I’m lucky to have a mom and sis who care (my dad’s elderly and unable to pitch in).
As for Sabrina, do you do anything specifically for or with her to make her feel special out of guilt (or feeling badly) for the care and attention Max receives? If so, can you expand on that a little bit?
I do special things for Sabrina because I know she feels that her big brother gets a lot more attention, which he sometimes does. However, I have said before that sometimes Sabrina is the needier one of my children—she is far more stubborn and less easygoing than Max is! I recently had the opportunity to take a trip with her for bloggers, which was great! That was a biggie, but every week I try to do special things with her. Some nights, I’ll put Max to sleep first and then we’ll read together. Or Dave will take just her to the pool or to get ice-cream. This also gives Max one-on-one time with me and Dave, which is good for him too. What’s not good is when I forget that she’s five and I take her on an errand with me to Target and she wants me to buy her every single thing in the store.
What about for the family…what are some of the obvious things that have changed (because of a child with special needs) and what are some of the subtle things that are different that your friends and family wouldn’t think about?
Max was our first child, so we’ve never known a family life without having a kid with special needs. I think that becoming a parent means you have significantly less time for yourself (UNDERSTATEMENT ALERT!!!!). As a parent of a kid with special needs, you have even less time than other parents because there’s just so much more to juggle. That said, I am not sure friends and family realize the joys Max brings us. I think they feel sorry for us a lot of times, but let me just say that Max’s giggle could be marketed as a cure for depression. It is seriously better than Prozac.
How do you and Dave stay connected as a couple?
We have no qualms about hiring babysitters and getting out on Saturday night or even the occasional Sunday night. Sometimes, we’ll even have a sitter on Saturday morning, just so we can spend some day-time together. On occasion, we’ll sit on our deck at night, have a glass of wine and talk about our day. Or sometimes, he’ll make me dinner. LOVE that. I hope you are reading this, honey.
(Before you read on, go to Ellen’s blog and read this post about “How a kid with special needs affects your marriage: extreme honesty”)
Can you share some tips on how you make things work for your family in general? What’s your secret to happiness (and raising a child with special needs)?
My husband and I are good about sharing responsibilities and working with each other’s strengths. For instance, I’m good at researching things, so I’m often the one to figure out new equipment for Max or find new therapists; Dave is better at feeding Max than I am, so he often does that (he has approximately a billion more times patience than I do). We try to have a healthy social life, which is good for the kids and good for us! We’ll have weekend BBQ’s with friends or meet up at fun places like science museums. Sometimes, we’ll double date with other couples. Having fun makes life more stress-free. So does not beating yourself up about stuff. Dave and I know that we are doing the best we can, and that some days, we are not the most perfect parents but in general, we’re fine. As for my secret to happiness, I don’t have any one genius thing to share (if I did, I think I could be very rich!) but I will say there’s one thing that always gives me a bliss boost: Kissing my kids. No matter what kind of crappy day you’re having, or what kind of a mood you’re in, kissing your child suddenly makes everything feel so much better.
Love That Max is up for a Parents Connect award…go and vote for her!
To follow Ellen on Twitter
She also writes for 5 Minutes for Special Needs and Hopeful Parents, sites I also love, so be sure to check out her posts there as well.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.