Guest Post: Squirt Guns and Opportunity

Kelsey, who wrote the piece below was first my student when she was in middle school, and then again briefly in high school.  I have watched her with her brothers and sisters, and have read some of the things she has posted on her facebook page, and have really kind of watched her grow up into this amazing, funny, incredibly caring individual.  Plus she cracks me up.  And she’s a really good writer, too.  Usually bloggers ask other bloggers to guest post to gain some new readers.  I asked Kelsey to guest post because I wanted to share her writing with you.  Enjoy. 😉

When Anna (wow, strange to call my middle school teacher by her first name) asked me to write a little something as a guest on her blog, I thought I didn’t know what to write about. …And then half a second passed by and I knew what I wanted to write about.

All she said was that she knew I had an interest in kids with special needs (I had previously used her as a reference when applying to a camp for children and adults with special needs) and that I could write whatever I wanted… so I did. Here is whatever I wanted:

About a year ago, I began working as a counselor at a summer camp that also provides weekend respites throughout non-summer months. All of the campers who attend these programs have special needs of some sort and their ages can range from 6 to anyone older than 6 who enjoys going to camp. When I explain my job to people, I usually just tell them that I get to play all day with my friends (and then at night, I specialize in getting them to brush their teeth when they don’t want to).

The first thing I thought about writing for this post was a story about this time when I was trying to engage a camper I was pretty familiar with. (We will just call her camper A.) She was pretty young and had come to most respite weekends that I had worked over the past few months, yet the things I learned about her likes and dislikes were limited to the fact that she liked to go for walks and that she quickly grew bored without one-on-one attention.

She wasn’t quite non-verbal, but she didn’t say much, and whenever I asked her a question, her answer was generally just “yeah.” Of course, her “no” was very defined when she was opposed to something, too, so I knew she had to have had some level of comprehension when I spoke to her… I just didn’t know where to place that level.

One day, while I was putting together the beginnings of a puzzle with another camper, I noticed camper A becoming agitated (most likely out of boredom) and beginning to upset other campers as a result. So I brought her over to the puzzle table to join those of us working, fully expecting her to sit and watch. To my surprise, though, she jumped right in and quickly assembled half of the puzzle on her own.

The thing is, you can’t “place that level” anywhere. Those of us who spend time with children (and adults, for that matter) with special needs KNOW that they are capable of more than the world sometimes tells them. Sometimes people who “just don’t get it” can be excruciatingly cruel in excluding them from opportunities because it is assumed that they simply can’t accomplish what “everyone else” can. That’s just hogwash considering everyone has their strengths and weaknesses to begin with, no matter which medical diagnosis you have tacked onto your nametag. But quite honestly, even those of us who know this best can be guilty of the same fault. After seeing what this camper could do, even with a simple puzzle, I realized that I was limiting her in other areas.

Therefore, when we sat down at the waterfront later on and I noticed her happily failing at firing a push-and-pull squirt gun, I didn’t let her continue on like I might have previously. I showed her again and again how to work it properly, part of me wondering if my attempts were futile… and low and behold, they were not. After enough demonstration and reminder, she learned how to properly work the toy and her squeals of delight grew and grew as she did it successfully again and again. It wasn’t that she shouldn’t be allowed to use the toy incorrectly… it was that not trying to teach her because I thought she wouldn’t understand was depriving her of an opportunity. (Of course, I eventually realized the monster I created when she began to soak my previously dry clothing… but that’s not the point.)

Through this job, I have met several young people who know they have what it takes to be successful- they just need some assistance. A lot of them also understand that many people in the world are not willing to give them the time and energy they deserve in order for them to reach their potential. Or rather, they know that this is a pattern… I can’t say that any of them understand it. And neither do I. It has been said time and time again that people who have disabilities can and want to do just as much as anyone else… and this is so, so true. But it’s not enough to parade that idea around on a button pinned to your t-shirt. It has to be actively practiced and enforced, even if you think you’re already doing all you could possibly need to do.

Even after this realization, I still find myself accidentally limiting campers in ways that seem so tiny and insignificant that it couldn’t possibly make a difference. (i.e. buttoning their coats or tying their shoes for them, simply because it’s faster if I do it.) However, I also know that rationalization to be a simple matter of trying to make myself feel better for these slip-ups. The reality of the situation is that even small limitations pile up quickly. It doesn’t matter if someone has been denied the education route they really could benefit from, or simply the chance to put together their own macaroni necklace. So many kids with special needs are told they can’t can’t can’t… and, most commonly, without being told anything at all.

Obviously, the solution to all of this would be for everyone to be perfect, so that helpers always knew how best to provide their help, be they parents, friends, caregivers, teachers, etc. In that case, though, those who needed help would also be perfect, therefore not requiring help in the first place. Maybe perfection isn’t what’s necessary here, though. Maybe a little reminder every now and then, on the other hand, is.

Summer Camp

No Honeymoon for These Newlyweds and That’s Just Fine

The Man and I thought we might get a chance to run away for a bit when The Boy visited his dad in August, but guess what?  Yup.  The Boy will probably not be headed to his dad’s until Thanksgiving, if then.  We didn’t really expect this visitation to pan out, but it would have given us a little time together.

ShrimperIn any case, we are making the absolute most of our Saturday nights together, and it has turned into an extended honeymoon/staycation of sorts.  We have been lucky enough to have fantastic meals just about every Saturday since we started over a month ago.  And I have to tell you, for an area that has about 12,000 people, there are some damned good restaurants down here.  Plus, we live in an area that relies on tourism in the summer, so it’s pretty easy to take a “staycation” – beautiful warm summer evenings, quaint little towns through which to walk, replete with old cemeteries, gardens, and, well, the ocean.

So, while I could be really upset that we haven’t been able to go away somewhere together, I’m not in the least.  The Man and I have done enough traveling over the past four years just to be together.  Now that we are together, we have reveled in these semi-private Saturdays, and we’ve been able to drag it out all summer long.  I really couldn’t ask for more. ❤

PS Thank you, thank you, thank you to Grammy and Poppy for this priceless gift ❤

Smiling & Winning

TulipsThe gods are smiling, and I am getting a much needed break today.  Fabulous Babysitter has taken over for me, and I get to go to a 12 hour crop, which I probably haven’t done in a whole year.  So no working, no packing and sorting, and no worrying about triggers and meltdowns for me, today.  Just 12 full hours to look back on happy memories, to be creative, to do a little shopping, eating, and more than a little kibitzing with friends.

I hope you get to take a moment for yourself today.  I think Spring is finally here, and there’s just something so hopeful and ready about May.

Cheers,

Annie

PS Rather than choose one winner from our two entries in the book contest, I’ve decided to give them both a copy! So Meg and Holly, contact me with your email addresses, and I will get your ebooks to you ASAP!  Congrats!

Nothing’s Impossible

The Single Mothers who have Children with Autism facebook page recently posted a reminder that taking a break from your routine and taking care of yourself is important.  Yet many commenters responded bitterly that it just wasn’t possible, and people who say that mean well, but that’s the last thing single moms need to hear.

I disagree.

Nothing's Impossible

Nothing’s Impossible

People, if something isn’t going right in your life, you have to make the change happen.  Do you think a respite fairy is going to land on your head and grant you three Friday evenings to yourself?  I have no nuclear family in the area, yet I am able to take an evening off every once in awhile.  Granted, I make a decent wage, and I get that it can be extremely hard financially – money was extremely tight after my divorce, because I was digging myself out of debt.  I know that feeling.  But there are ways, and you have to find them!  Insisting that it’s impossible and defeating yourself before you even start will turn you bitter, and as a result, everyone around you, including your children will suffer.  I know people like this.  Their negativity is like a virus.  And when they don’t take time for themselves, they are more apt to run out of patience and snap at their kids, become exhausted and ill, and it spirals downward from there.

Some ideas:

  • A break from routine is not necessarily a break from your child(ren).  I know routines are the safety zone for kids with autism, but I have written before about how amazing it was to stop and get myself a sweet tea after a meltdown-y morning – it was FANTASTIC, and it had a lasting effect.  Something small like that is a great way to start treating yourself kindly.  Lord knows our kids won’t always show us the same kindness!
  • I am lucky that my child enjoys latchkey – it is relatively inexpensive through the school, and gives me a much needed break from ALL kids after work, because he doesn’t like to be picked up until 5pm.  I don’t pay any extra for keeping him there until 5pm, and it is an excellent opportunity to unwind a bit before the evening routine begins.
  • Groups like The ARC often have respite grants for members, and membership dues are often inexpensive or even free.  This is a GREAT resource that is oftentimes underutilized, which means you have a great chance of getting some money to help defray the cost of even a family member providing some babysitting for you.
  • Have a friend with a special needs child?  Share the babysitting costs, OR offer to watch the kids for an hour, if she’ll take them next time.
  • Feel like your calendar is too full to take a moment for yourself?  Pencil yourself in.  You need to be a priority in your own life.  There’s no excuse for that.
  • Can’t find quality help?  Ask at your school – sometimes the parapros (or aides) need some extra cash, and already have a relationship with your child.  Maybe your local high school has some National Honor Society students interested in becoming special education teachers (and they probably need service hours and would do it for free).
  • Sometimes just having an extra pair of eyes in the house while you do chores (or sleep!) can be a weight off your shoulders.  Again – get a high school student to come in and be your eyes and ears (or entertainment for the kiddos) while you get stuff done.  The more time they spend with your kids, the more they will learn about what to do – special needs babysitters in training!
  • Bartering is getting big.  Is there something you could do for someone in return for them watching your kiddos for a bit?  Bake some banana bread?  Fix a networking glitch?  Give someone swimming lessons?

If none of these ideas will work for you, I feel for you.  I completely understand that some children’s needs are severe, meaning breaks a just going to be harder to come by.  But you can’t stop trying.  You have to find a way.  We special needs parents are in extreme danger of burnout and battle fatigue, and the very reasons many moms and dads say they “just can’t take a break” are the same exact reasons they must.  Our children need us at our best, so we can handle the worst for a long time to come.

Missing

The Boy is at his dad’s and has been for about a week.  He sounds happy and relatively tired when I talk to him on the phone each night.  While I miss him a bit, I am still savoring the respite: besides a few days this summer (Thank you, Fantastic Babysitter!) and a few days in June (Thank you, Grammy & Poppy!), this is the first extended break I’ve had since February.  In fact, by the end of this next week, it will be the longest time I can remember being separated from The Boy, ever.  For the same reason that I don’t feel guilty for being a working mom, and for the same reason I don’t feel guilty when I have the rare opportunity to go out with friends or The Man, I don’t feel guilty about enjoying this time right now.

This makes me a better mom.

respite

Without this time away, the threshhold for frustration gets dangerously low, and a whole range of negative emotions starts brewing.

The Man and I do feel like something (someone, more like) is missing at times, and we get bored a little more easily.  Ask me in three days, and I will definitely be missing The Boy fiercely.  But for right now, it feels good to not really have to worry about meds, schedules, and sharp crayons.  And The Boy is actually spending time with his dad.  It’s a win-win.