Monday, September 16, 2013

Family time, special needs style

Max and I went out for pasta this weekend while Dave took Sabrina to one of those bounce places full of inflatables. Sabrina went off on a playdate while Dave watched Max biking up and down the street and I ran some errands, then we switched and Dave went to pick up some groceries. When Dave took Max for a speech therapy session, Sabrina and I went to the paint store to pick out a color for her bedroom (Benjamin Moore Spring Violet).

Saturday night, we all went to a party at a friend's house. We got there first, so Max could ease into it, only he wasn't happy and started screeching. So Dave took him for a ride to calm him down, Sabrina played with kids and I chatted with my friend. Later, Max quieted down and I hung with him on the couch watching Disney Jr., Dave out on the deck drinking wine and Sabrina bouncing on a trampoline with the kids. As I sat there, I thought about how our family feels so divided at times, and it got to me. And this is even before Max's Sunday special needs program and Sabrina's dance and gymnastics lessons kick in.

Last night, I asked Dave if he ever wishes we did more stuff together as a family. "Yes, I do," he said. "But it's part of the deal, honey. Try not to let it bother you." That's the way things often go: I overthink and over-feel, and he's the opposite. We balance each other out.

Of course, there's stuff we do as a family: museums, fun parks or regular parks, vacation anywhere (we all love road and plane trips), restaurants Max is used to, just hanging out on our street. We've made major strides from when Max was little, and he barely ever wanted to leave the house. Yet there are still limits to what we can do as a family, typically because Max doesn't feel comfortable going to some places or has no interest, or he's not physically up to it.

One wish I have for the upcoming year is finding more activities to do together—and that Max will mature into it. I want to enjoy both kids with Dave. I'd like to have a whole lot of memories of us doing everyday stuff together, not just trips. At some point, the kids are not even going to want to be with us (at 8, Sabrina already has teen-age girl 'tude), and I want to pack it in while we can.

We've never gone on a family hike, which I'd really like to do. So we're going to try in a couple of weekends, find a short flat trail and bring a collapsible stool for Max so he can rest up. He'll wear his Cars 2 backpack. Sabrina will change her outfit five times and her earrings twice before we leave as I say, "Sabrina, let's gooooooo! NOW!" The kids will squabble in the car ride en route there. As we walk, Max will remind me approximately every five minutes that he wants a talking Lightning McQueen for his birthday. Sabrina will say "I'm tired!" maybe fifteen minutes after we set off. Perhaps we'll tell knock-knock jokes or sing songs, ones Sabrina learned at Girl Scouts or "You Might Think I'm Crazy" from the Cars 2 movie. Dave will ask why I didn't remember to pack his seaweed snack and I'll remind him, "I'm not your maid!" We'll collect fall leaves. I'll take deep breaths of clean, woodsy air and tell everyone to. Someone will trip or fart or burp and we'll all laugh.

You know, just like any family.


  1. I know what you mean about feeling like the family is divided sometimes there are places I can't go so one of my parents has to stay with me.

  2. I don't have any SN children, but my kids are spread in ages: 19, 14, 13, 5, and 3.5, so there are many times where they need to be busy doing very different things...

    One thing that is really good for us is Shabbat, since it is very structured, and yet familiar and relaxed. Everybody knows what to expect, and can participate appropriately. Sometimes we have extra guests over, and sometimes it is just us and we can snuggle on the sofa and watch TV... I know, not very halachic!'

  3. I feel like this a lot, too. Then I remind myself that sometimes it's just my boys' ages that are dividing us and we wouldn't be doing the same things anyway. xo

  4. I wish you well on your hike xx I feel like this alot too but more because of age differences and sometimes due to physical limitations. My fantasy is a bike ride which may look more like a circus ;)

  5. Ellen, does your inflatable bounce place have a trampoline floor feature? It could be a great place to do physical therapy that won't feel like therapy for Max, and if you go during the day when it is quiet and get him liking it, and go a lot, it could become a whole family place to play all together. I've been meaning to post about how much this type of activity has done for my daughter but I am too busy whining on my blog, however, I think going to a bounce place when we did and going consistently has been the very most important thing I've done for Hannah. And the hike is a great idea.

  6. This post tugged at my emotions because I have often felt the same way with our kids. My husband and I are often juggling the care of Kyle so that we can allow Kaylie to take part in some activities that Kyle has no interest in or cannot participate in. We're often dividing up activities and I often get sad when we can't do typical family outings. One of my blog posts, "Bridges", describes how family entertainment often looks different for us, and how we're always searching to find something our whole family can enjoy together!

  7. Wonderful blog today Ellen. I can't tell you how many times we have felt the same way. Like you, we've always tried to find activities that we can all do together, with mixed success. Interestingly, the last year+ we found a way to at least enable my sons Samuel (13) and Isaiah (16) to spend more time together – we hired a really cool, male, young (24) after-school support person for Samuel who Isaiah also likes very much. It's a rare find, someone that both boys like so much that the 3 of them enjoy hanging out together (often with one of Samuel's friends too). And it may not be as easy for families that have kids of 2 different genders like you. But it's going to be a guiding principal for us going forward, to make sure whatever care providers we find for Samuel are social connectors so that other kids enjoy being around them. We've always known the importance of this at some level, but as Samuel gets into his teenage years, it's more critical than ever.

  8. Sweet! You could always start running in tandem, Ellen. (You wouldn't catch me doing it, but I just read that post before this one.) :-)


Thanks for sharing!

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