Wednesday, April 30, 2014


More and more lately I've realized how parenting the children that I've been blessed with has changed my entire view of the world, and how the experiences of the last few years have really shaped every aspect of our lives.

In some ways, the topic I'm slowly sidling up to writing about, is one of the ones that had me so relieved when we finally had a diagnosis because all of the sudden it just made sense.

Before the diagnosis, before I knew anything about autism or SPD, I wasn't totally sure why there were certain parts of our daily routine that were just so different and at times so hard.

It's like back when we lived in Florida and all the other moms could take there kids out and have them play in the yards and street area in the residential part of the law school... I tried it a few times... and spent the entire time chasing Mae down the street.  I would put her down, to play, and she would just take off running as fast as she could in one direction, down the middle of the street.  She wouldn't pause and she wouldn't look back to see if I was coming to get her.  She would just keep going and going.  She was only a year old and it was terrifying and exhausting.

It didn't take long before I stopped going out there altogether.  I couldn't keep up with her.

I was still sick from the miscarriage for many of those months and it seemed so pointless.  I couldn't talk to anyone because I was just chasing, chasing, chasing her any time her feet touched the pavement.

So we went to parks that were totally enclosed and when other parents walked in and left the gate open and she would turn towards it, her eyes bright with excitement, I would race over and close it before she could make her escape and head straight towards one of the many, many ponds or lakes that dotted the landscape.

I was afraid that people would think that I was snobby or didn't want to make friends because I just couldn't bring myself to take her down there again and chase her down the street and not end up talking to anyone... but I was too tired and embarrassed that I couldn't keep up with my one year old to do anything about it.

Life went on.  The last two and a half years have flown by.  And I understand now why life has always been different for us.

The autism acceptance walk was at a beautiful park this past weekend.  It was one I'd been invited to last year on a day when we couldn't go.

When we went to the walk I couldn't stop staring at the play areas.  They were quite lovely.  One was a splash park and the other part was a big castle play structure and I kept trying to wrap my mind around how we could make it work, how I could bring the kids there by myself this summer while Paul is studying for the bar.

Finally, when I took a deep breath and was honest with myself, I had to admit that at this point in our lives it's just not possible.  I can't take them to this park without Paul.  The splash park had a fence, the kind with three horizontal boards with giant spaces between them that either Patch of Mae could get through in about five seconds, and the playground wasn't entirely enclosed.  Both were next to a lake.  There was no way I could take Mae and Patch to that particular park on my own, when Patch could head in one direction giggling for me to chase him, while Mae sprinted straight towards the lake, flinging her shoes as she ran.

Other people see a park.  I see a totally uncontrollable area, with a highly attractive, dangerous feature.

I think that's one of the things that can set special needs parents apart from other parents and can make us a little harder to understand and even cause misunderstandings.  Our views of the world are often shaped by our experiences and I know that in many ways I see the world differently than parents who've never had to worry about a kid sprinting into a busy road or running and jumping into deep water, which is just so irresistible.

These days, when I hear suggestions about things that I should be doing, extracurricular that I need to be adding to our schedule, I just sort of smile and shrug.  I know that most people really can't probably picture how different our lives are from the norm.  Our little world works really well for us.  I'm having an amazing time starting first grade with Sadie (we're getting a head start so we can take a nice little break in October), and we have therapy seven times a week now, for just about 20 hours altogether.  That doesn't take into account doctor's appointments or the fact that nearly all the time I don't have a car of my own to drive.

When I started out I meant to write a post about special needs parents and how things that seem so basic, like going to a playgroup or homeschool group, things that seem easy and enjoyable to most people, can seem like an insurmountable challenge to a special needs parent who's facing the task of tailoring these tasks to their particular child, or even just surviving them with their children.  But then I realized all I could write about was myself and my own experience and how the blessings and challenges we face have shaped our world.  For us that means that maybe we leave out things that other people think are necessary.  It means not as many play dates or as much socializing as I would have chosen if I had designed a dream schedule with no knowledge of our actual lives.

Yet somehow it works for us, without leaving me feeling like I've somehow failed because I can't sit and talk with the other moms while my kids play happily at my feet... because right now, that isn't in the cards for us.  Maybe it won't ever be.  But what we have instead, while different, offers triumphs and laughs that I couldn't have imagined before we set out down this path, moments that sweeten those hours that are a little harder to muscle through.

It might make us seem a little strange to other people, and even antisocial when I'm too tired to even think about answering the phone, much less to plan to do something involving people and playing and leaving the house, but it's also pretty amazing and wonderful... and while I can't quite wrap my brain around what it's like to sit and talk and watch my kids play in an unenclosed space (seriously, just thinking about it kind of stresses me out... because... she's a runner), I do know the absolute joy of being on a three day high because when I tucked Maggie in last week she picked up her tooth brush and pretended to brush her teddy bear's teeth and I walked around the house for at least 72 hours glowing because she'd just engaged in imaginary play and how I even took a moment to shoot off a quick email to our coach from the university to let her know about the big moment, which would be completely and utterly mundane and unmemorable if our world were anything other than exactly what it is right now.


  1. It may not be what you imagined, but it is a beautiful life. I love being at home too, but Susi forces me to go out of my natural habits and socialize :). We all just adjust to our kids, and in the end it doesn't matter how people may view you, what matters is the home you created for your family. You are doing great.

  2. Reading this makes me feel better about the past; all the times I didn't do the things that I felt I should have. (and I didn't have a runner either) I could go to parks but there was no socialization. It wasn't until my fourth kid (adopted) that I figured out that it's a chicken and egg deal; a social child attracts other kids and their moms; a non social child pushes them away.

  3. I kind of get what you are saying. We had a preemie in 2008 during flu season. We were on total lockdown. ZERO public places, not even Church. We just couldn't risk the baby getting sick. My older child, who was used to going out and about, having playdates, etc. suddenly was a homebody. We did that for about 6 months. It was really hard and isolating. I think I was depressed, but didn't realize it at the time. I was just doing what moms do, getting the days done and protecting my kids. Looking back, I do wish I had reached out a bit more, but back then it didn't seem possible. Anyway, we did what we had to do.

    It's hard when one child dictates what the rest can do. Sadie would benefit from making girlfriends and such. Part of the concern people have over homeschooling is that the kids don't make those connections with their peers that are important for their social and emotional development. You aren't in a position to help Sadie make those connections right now. That must be hard!

    I say this with all due respect, and as someone who supports parents who want to homeschool - do you think this might a time to consider a traditional school for Sadie? It might give her an opportunity to have her "own" little thing, and not always be subject to her sister's needs. It might be great for her to get out of the home while Mae is doing her therapy. It would certainly be great for her socialization.

    I'm sure you've thought of that already, and I absolutely do NOT mean it as a criticism of your choices or abilities, but just an idea. I totally get that you intend to homeschool but sometimes things do change or unexpected circumstances come up. I know as a sibling to someone with special needs (my parents adopted a child with Down Syndrome when I was 11) it can seem like the world revolves around the neediest child. The world can be very small when parents are wrapped up with a special needs child. Kids can only understand that to a certain extent. Again, no insult intended at all, just an idea. Sadie is so bright and curious, I bet she would LOVE school.


  4. Nope, I don't think she needs to go to school at all. I actually think that socialization in the home, with siblings if possible, is the best socialization that can possibly occur and I really, really disagree that putting a kid in a class with a bunch of other kids who are the same age and letting them develop a pecking order is at all helpful to social development. Even a tiny bit.

    Sadie and I spend all morning together with my focus totally on her while we do school. Then she plays all day with her siblings. When we go to ballet on Saturday and she sees other kids she's always the first kid to go up and say hi to any kids who are new and ask them to play. She talks with adults and people of all ages.

    I just don't quite buy into the artificial "must put kids in a classroom with other kids their age" sort of socialization that society pushes. It's just not a direction I want my kids taking.

    Think about it historically. For the vast expanse of history kids haven't been in peer groups their own ages to be socialized and actually would usually be around their peers.

    I also totally don't mean this as an insult to those who've chosen that path, I mean, others are free to choose it, but I think that people make it out to be more necessary than it actually is.

    When I see Sadie playing with her sister connecting with her sister, talking about their friendship, I can't imagine better best friends.

    And when I think of how she's handled the various bullies this age that she's encountered from swim lessons to social events we've been at (she did it well... but just couldn't understand why some kids are so cruel...) I'm more thankful than ever that I can help preserve that innocence for a little bit longer.

    I think we just probably have very different beliefs about what our kids need. Thankfully I know mine and can tell that she is getting what she needs through our family, just as the majority of humanity has done throughout the ages!

    But thank you for your concern (and I totally mean that!). I know it's a very common one!

  5. Honestly, I think the whole "socialization" thing with play dates and so on is pushed on kids too early in this society. When I was a kid (back in the "olden" days) kids stayed home with their mommies and siblings until first grade. Most didn't even go to kindergarten. That means most kids were 6 years old before they really interacted with kids who weren't related (such as siblings or cousins). There is nothing wrong with it.
    Sorry you find play areas too open to take Mae to. A playlot in my neighborhood has a closing gate, so no escape. It has lots of swings and climbing things for the kids, and looks like fun. SO maybe you could call around, or ask at the University and see if there's a playground around that is enclosed. Or even suggest such an enclosed playground to your local government official. It might be taken up as a good idea.
    And don't worry or feel like others are judging you or think you are anti-social. You don't need to justify your actions as a parent to anyone else.
    And if you do interact with other moms, you can offer an unsolicited explanation in general, like, "Oh, my Mae is so active, I just can't manage her and my little one without my husband here." Then change the subject.
    Often times in our lives we are dealt cards we would never have chosen for ourselves. If we stick with God, and have faith in Him, we may not get what we wanted or expected, but we will get something that is ultimately more beautiful than we could ever dream.
    God Bless. ~ Bonnie


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