Archive for the 'parenting in general' Category

A Wheel family dinner

March 31, 2012

two parents and two kids eating dinner

This is not my family--we never eat that much salad.

My husband and I both grew up with Family Dinners. Two parents, two kids gathered at a round table, gulping down a square meal. Talking, sulking, laughing, teasing, scolding and trying to enjoy one another’s company. And often succeeding.

So naturally I assumed this is what our family would do. And for a while, we did. Jon or I cooked a meal, dished it out at our tiny table, rolled Chloe’s wheelchair and feeding tube up to one side, and had family dinner.

But a successful family dinner depends on communication, and for Chloe, communication is hard. We tried to include her, asking questions and putting down our forks in order to help her answer them. But there is only so much small talk you can make out of yes/no questions, so Jon and I often lapsed back into “grown-up talk” while Chloe got bored and grumpy.

We kept at it, though, because I thought it was a rule: “good” families eat dinner together, not separately. And definitely not in front of the TV.

I don’t remember how we started watching Wheel of Fortune at dinner time. We’d known for years that Chloe liked it, and for a while, we kept it as a once-a-week tradition, a special indulgence.

These days, however, it’s the norm. Instead of gathering around the table, we line up in front of the TV to watch the daily antics of Pat, Vanna, and a random assortment of letter-guessers.

Chloe likes it when Jon and I can guess the puzzles before the contestants, and she loves when I start yelling “don’t buy another vowel, you idiot, the answer is obvious!” We cheer together when someone wins the bonus round, and grumble collectively when the puzzle includes too many Q’s and W’s for anyone to have guessed.

I like to think that Chloe gets some spelling and vocabulary practice out of the whole thing, but mainly, we enjoy sharing this experience, as a family.


Babies everywhere

February 11, 2011

I thought I had overcome my problems with babies, but lately I’ve been overwhelmed by sheer quantity. In the past year, about 80% of the reproductive-aged women I know have either gotten pregnant or given birth. Adults are disappearing from my facebook page, replaced by ghostly ultrasounds and squishy newborn faces.

Now, individually, each of these babies is a miracle and a blessing. I really do enjoy meeting them and hearing about them, and sometimes I even like flipping through their pictures. But collectively, these babies are an emotional burden. You see, newborns, and the trappings of newborns, trigger nothing but bad memories for me.

That may sound like an exaggeration, but it isn’t. Chloe’s first year was an unrelenting nightmare of anxiety, pain and disappointment, and baby artifacts will always remind me of that. I can’t look at an infant carrier without remembering those three hour drives to Children’s Hospital, Chloe crying all the way, knowing that at the end of the journey we’d be facing more tests and more bad news. Baby toys are loaded with unmet expectations–every colorful invitation to grab, pull and bite was an invitation that Chloe, paralyzed by her brain injury, could not accept. And I don’t even want to talk about bottles or baby food.

Of course, life with Chloe these days is anything but a nightmare, but babies are also reminders of all the skills she still doesn’t have. By six months, most babies are starting to sit up, eat solid food and crawl, and the speed at which this happens seems cruel to a parent of a disabled kid.

And then there’s the envy. I always assumed, even before Chloe was born, that having any newborn baby was no fun at all, that it was something you just had to endure. Apparently that’s not exactly true, and every glowing facebook post from a new mother or father is a little reminder of what I have missed. A friend of mine said the other day that the first thought she had on seeing her son was “Wow, I like that baby!” My first thought on seeing Chloe: What if she dies?

Like I said earlier, these babies, on an individual basis, are great. I really do enjoy seeing them, holding them, hearing their parents’ concerns about binkies and spit up. But if I seem less than properly sentimental at the next baby shower, or if my eyes start to glaze over while hearing about the wonder of birth or the joy of nursing, well, now you know why.

How to be on time when you have a special needs kid (or probably any kid, really)

January 30, 2011

  1. figure out the latest acceptable time to get somewhere
  2. think backwards through all the steps it will take to get ready to go and estimate the time it will take, adding 10 minutes to each step, just in case.
  3. if a wheelchair is involved, don’t forget time to load and unload (20 minutes).
  4. add half an hour to the total.
  5. come up with a simple, all purpose excuse, because when you show up late in spite of all this, your real excuse will probably be a little TMI.  no one wants to hear, “well, we were about to go, but then someone had a big potty accident and then while I was cleaning that up I saw something that looked like a seizure but I don’t think it was but the mere possibility made me sit on the couch and weep for 15 minutes and then I had to wait for my eyes to get less red and puffy before we could go and by that time it was time for another tube feeding.”
  6. consider staying home.

Raising kids with disabilities

January 22, 2011

A while ago, a friend told me that when she had her son, a few people questioned her ability to care for him.  I was astonished.  My friend, who is a single mom, is one of the most devoted and capable parents I know, and it’s hard to believe that anyone who knew her would imagine she could be anything less than a great mom.

So what’s the problem?  My friend uses crutches and sometimes a wheelchair to get around.  This hasn’t held her back in any other area of her life, but for some reason, people thought it would keep her from being a good parent.

It seems a little funny to me that this attitude surprised me.  But I guess it’s because I see parents with disabilities as kind of mirror images of myself. Many of the issues we face are similar. Grocery shopping, for example, is not easy with a kid and a wheelchair–it doesn’t matter who’s pushing and who’s riding. Parenting is hard, and when someone involved has a disability, it’s very hard in one specific way. So why do I get automatic “super parent” status while my friend has to prove herself over and over again?

I know several parents who also happen to have physical disabilities, and I have learned a lot from them. I’ve learned that my daughter’s disability doesn’t have to hold her back from attending college, getting married, or having kids and grandkids. Adults who have “been there” are wonderful resources for parents trying to do the right thing for their special needs kids.

Not only that, but children who grow up riding on their parent’s wheelchairs learn important things about acceptance and perseverance. I had to wait until my twenties, when Chloe came along, to learn these things, but my friends’ kids were able to start at birth.

One of the best play dates Chloe and I ever had was at the house of another friend of mine, a woman who has cerebral palsy and is an advocate for people with disabilities. Unlike most kids, her two boys boys were immediately comfortable around Chloe.  They brought us different toys and tried different games until they found things she liked, and then proceeded to entertain her for an hour and a half. These kids have met many people with different disabilities, and they have grown up knowing–really knowing–that there are all kinds of ways to be human, a rare and valuable gift that only a mother with a disability could give.

My complicated feelings about the skulls on Chloe’s pajamas

October 21, 2010

close up of dress fabric, pink and black and decorated with skulls

image courtesy of crafty_dame via flickr

For this entry, I’m going to take a break from the subject of disability and write about something that concerns every parent–kid’s fashion. Recently, I’ve noticed a trend in clothing for small children: death. More specifically, the skulls that once signified poison, pirates and anti-social sentiments have joined the ranks of hearts, rainbows, cars and cute animals as appropriate images for kids to display.

Of course, skulls-as-fashion-accessory is not a new trend.  In Mexico, the Day of the Dead is celebrated with images of every kind of skull you can imagine.  The difference is that these skulls, no matter how jolly they look, clearly signify death.  They are reminders that, no matter what we are doing right now, no matter how loved and important we are, every human being is actually a walking, breathing skeleton, which will spend a lot more time on this earth dead than alive.

Is that what I am supposed to think when I see a two year old in a pink, glittery shirt decorated with a grinning, heart-eyed skull?  Did her mother wake up that morning and think, “I’m going to put Emily in her skull shirt today as a reminder that one day we’ll both be rotting corpses”?  Somehow, I don’t think so.

So where did this skull theme come from?  Like most kid’s clothing designs, it must be targeted at the parents at least as much as the kids, which means that originally, designers were probably thinking about parents who spent their teenage years listening to the Misfits or the Grateful Dead.
Grateful Dead Skull and Roses

I supposed this is just another example of the way fashion evolves over time–things that start out as edgy, images that are associated with strong feelings and beliefs, become familiar and commonplace.  But not all images can or should lose their meaning so easily.  Most people do not wear crosses, Stars of David, or Islamic crescents without thinking about their religious significance.  And can you imagine a swastika, a Hindu symbol that will probably never recover from its Nazi associations, decorating pajamas alongside hearts and rainbows?

What does the skull trend say about our culture?  Have we overcome death, reducing it to a fun hobby, like gardening or bird watching?  Not likely. Maybe, with concerns about healthcare, school shootings, global warming and war looming over us, we figure that if we gloss over death, if we cutesy it up a bit with pink hearts and bows and proclaim that it’s nothing more than a kid’s fashion accessory,  we can reduce it to something more manageable.  Obviously, this plan is doomed.  Just like we all are.  Think about that next time you pull the grinning skull shirt over your child’s own grinning skull.

Updated: okay, so a friend of mine has pointed out that the skull thing was probably started by the Pirates of the Caribbean movies. Duh. Most of this still stands, except that any trend that involved Johnny Depp can’t be all bad, right?

On not doing it all

September 1, 2010

I almost forgot to put on Chloe’s eye patch today.  Again.  For two hours every day, she’s supposed to wear an eye patch over her right eye in order to strengthen her left eye.  When I say “eye patch,” you are probably thinking either of a black plastic thing on an elastic band, or a flesh colored bandage, right?  Well, Chloe’s eye patches are more like accessories.  They come in several colors and styles: blue and pink with flowers and smiley faces, purple and pink with bows and lipsticks, and of course, pink camo.   It’s always pretty exciting to see what the Patch of the Day is, when I remember the damn things.

It’s hard to fit extra chores, even little ones like sticking on an eye patch, into our day.  The eye patches are scheduled right in the middle of snack, homework, and antacid medicine, and I have to put it on early enough so that Chloe can wear it for an hour before we take it off during therapy.

The thing about having a kid with special needs is that you can pile up a huge to do list very quickly.  When Chloe was a baby, one of the doctors we saw said to us, “Don’t  worry about being therapists; your job is to just be parents.” Nice idea, but it’s easier said than done when the occupational therapist wants you to do 10 minutes of Wilbarger technique every two hours, the physical therapist recommends joint compressions twice a day, your relatives are going on about something they heard about infant massage, the conductive ed people think she should be sitting on a stool holding on to rings while you eat dinner (never mind that your home and your dinner are not designed to accommodate this type of thing), the ABR people encourage you to get in 3 hours of therapy a day, the neurodevelopmental pediatrician wants her sitting up in leg braces for at least an hour,  her speech therapist has just taught you how to do a complicated regimen of cheek stretches and nuk-brushing, and here comes the eye doctor with the patches.

I learned years ago to be picky about what we committed ourselves to.  First of all, a lot of that stuff just isn’t worth the time for a kid with Chloe’s degree of disability.  When she was a baby, I put a lot of faith in the poking and brushing and stretching, but as she got older, and her disability got older right along with her, I started giving things the week-long test.  Try it for a week, and if the hassle factor is greater than the results, let it go.

These days, I limit my time as a therapist to an hour or two of ABR, and some oral stim (though most parents call this “toothbrushing”).  ABR works, and you can do it with the TV on, so everyone wins.  Sometimes, when we go to doctors, I get wrongly accused of being the kind of parent who “does a lot at home,” and I feel a little guilty.  But really, I do a lot.  I make sure Chloe gets an hour to herself every afternoon to play with her dolls.  I keep our dinner time relaxed and therapy-free.  I send her to school, where she can develop socially and mentally, even though it means a lot less time for therapy.  And occasionally, I even remember the eye patch.

How to be a super parent (a guide for regular parents)

August 12, 2010

Parent of kids with disabilities are super parents. Like Spiderman, we don’t have a choice. But as a parent of a typical kid, you can decide to be super, at least from time to time. It’s a lot of work, but hey, not as much work as being me!

Step one: Find a kid with disabilities (KWD). If your kid is lucky, she may have a KWD in her class at school. These days, even if they spend most of their time in a self contained classroom, KWDs usually go to art or music class with the typical kids (TKs). It would be nice if there were more programs in schools and communities that brought together TKs and KWDs. Maybe you could help start one. That would be super.

Step two: get in touch with the other kid’s parents. You could ask a teacher for help with this, or lurk around after school and keep an eye out for wheelchair vans and service animals. Don’t be nervous about approaching them; most parents of KWDs are dying for more social interaction opportunities–see my previous post. Don’t tell them that their kid is going to be your kid’s Token Friend with a Disability. That might seem off-putting. Just say your kid is interested in getting to know their kid better and how about a play date.

Step three: Work with the other parent and be open-minded. They might be nervous about their kid’s “performance,” especially if part of the kid’s disability involves difficulty with social interactions. Let them know that you have no expectations. Ask what their kid likes to do, and ask them how your kid could be involved.

Step four: explain things to your kid before the play date. Ask the other parent what to tell her, and let her know she is free to ask questions, as long as she is polite. If the KWD has sensory or emotional issues, lay out some ground rules, like “no loud noises,” or “don’t touch his toys without permission.” You should plan on being there for the whole play date, at least the first time.

Step four: remind yourself that your kid will thank you later, if not immediately. He might be bored. He might not understand why you are asking him to do this. It might take some effort and creativity on everyone’s part, but there’s a good chance everyone will benefit. After all, kids are naturally inquisitive and they like to learn new things. And kids want to understand other people, especially people who are different from them. I vividly remember the few people with disabilities that I got to meet when I was growing up, and learning that people live full lives in many different ways was a valuable lesson for me. It’s one that every kid should have the chance to learn.

Other people’s kids

August 11, 2010

Aside from her physical disabilities, Chloe is a regular six year old. She likes games, laughter, toys, and the usual kid-oriented chaos. She listens to other kids, laughs at their jokes, and encourages their exploits. Kids who know her appreciate her friendliness and enthusiasm. Kids who don’t know her tend to ignore her completely. This is understandable–because Chloe can’t talk or run around, she can’t participate in regular kid interactions. She needs an adult to explain to the other kids how she operates, to come up with ways that they can include her, to answer questions.

At school, her teachers and aide are these adults, and this works great. The kids trust them and know that they can ask questions. We’ve encouraged the staff at the school to be open about Chloe’s disability, to explain everything the kids want to know. As a result, they are completely comfortable around her. They know how to communicate with her, they give her hugs and hold her hand, they take turns pushing her chair.

At social events involving kids that don’t know Chloe so well, we are at a loss. As Chloe’s parents, my husband and I can answer questions and guide other kids in their interactions with her. But we need help. We don’t feel comfortable telling other people’s kids what to do, and the kids don’t usually feel comfortable asking us questions. So we usually spend most of our time pushing Chloe around, keeping her physically close to the action, hoping for some opportunity to include her, while the other parents enjoy their grown-up time, letting their kids take care of themselves. Eventually, the three us get tired. Chloe gets sick of being ignored, and we get sick of watching her get ignored.

I’m sure the other parents don’t realize what is happening. They’re used to kids working things out for themselves, and they’re used to seeing us take care of Chloe. Maybe they don’t have any idea what they could do. It’s up to us to change things, I guess. The next time we take Chloe to a party or event with other kids, I think I’ll talk to some of the parents before hand. I’ll tell them that if Chloe is going to be there, we need to work together to come up with ways to include her. I know from watching the kids at her school that other kids benefit from getting to know Chloe. It just takes a little extra work, on everyone’s part.

Mommy Blogs

June 6, 2010

So for years I’ve avoided reading “Mom Blogs.” I assumed the bloggers who had typical kids would irritate me with their typicality, and the bloggers who had special needs kids would irritate me with their sentimentality/religious fervor/whininess/whatever. I’m kind of a picky reader. But since I’m now officially a mom/blogger, I decided I’d better see what else is out there. And too my surprise, I found lots of good blogs right off the bat.

Special Needs Mom Like Me
better than normal
Love That Max

a little pregnant
Postcards from the Mothership
the modernity ward

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