Author Archives: BrookeWalker

This Land is Our Land

I attended the last talent show of my girl’s high school career in June. Of course I got there JUST in time for a lovely rendition of “All About That Bass” by Heather’s classroom, and a slightly awkward solo of “Moves Like Jagger”- complete with dance moves. Next up was a boy and his dad, singing and playing “This Land is Our Land”. I don’t consider myself a super patriotic person, although for some reason I always tear up at the National Anthem, especially if it’s performed by anyone under the age of 10 or a service member. But to be fair, I also cried when some kid sang a Justin Bieber song, and sometimes at commercials- The Budweiser Horse and the puppy? Forget it!

Anyway, this particular version of This Land is Our Land was particularly meaningful to me, as it probably was to everyone there, because it was sung by a student with disabilities. I know the song is meant to be about America and it being “made for you and me”, but in that moment, it was about life and experiences and society. About being a part of something. I had envisioned crowds of people, disabled and not, crowding around, singing, demanding their right to be a part of something good. Or something bad. To be able to make choices about their day, week, year. To be able to make a move without having it written down or charted. To be able to have a bad day, without it being graphed and put in their permanent record. With the song, this boy was claiming his right to mess up and make mistakes; to love and lose; to fail and keep trying.

Heather graduated this past month, and we are now struggling with losing her place in the “land” of school, and helping her find a place elsewhere. She is faced with a life of choices ahead of her, in theory anyway. A life in this land that’s made for you and me. She is a part of a few things, a private yoga class, the YMCA, and frequent trips to the mall for new wallets. She chooses very few of those activities herself. I choose them. I choose them because I know her, I know what she is interested in, and what type of activities she can handle in a day. I choose them because regardless of how great Walgreens is, no one can spend 5 hours there three times a week.

The moral of the story isn’t that people with disabilities will have the exact life that people without have. It isn’t that they should be doing things regardless of their understanding or ability to do them. But we can help them be a part of this land that’s made for them, give them experiences that broaden them and help them grow, even if it isn’t exactly what their typical peers might be doing. Some mistakes she won’t be allowed to make. I won’t let her walk into the street just because she chooses to. But I will let her have a bad day, and help her deal with the consequence of the choices she makes on that day. I will sign her up for a yoga class, and pay out the nose for a private one, because while she has a right to be involved in that activity, so do the other paying customers who expect a quiet peaceful class.

Unfortunately, sometimes the ones we love aren’t able to take advantage of this wonderful world of opportunities as some others can. Sometimes the ones we love can’t take advantage of this land at all. It falls to us to do that for them. And it’s a daunting task, but I can help make her days as full as possible. I can share her with the world. Because this life was made for her. And she makes this life better.

Thanks For Putting Up With Me

My girl graduated this past week, and as I sat amidst our friends and family, watching her freak out a little bit during the ceremony, I couldn’t help but think about how we got there. We’ve both grown, and neither of us has done it alone.

And so, thank you…

To the parents who taught me patience, compassion, empathy, selflessness, generosity, and that it is entirely possible to love a child who is not your own as if they are.

To the sisters, the ones I started out with and the ones I ended up with.

To the best friend who has shared her couch, her wine, her daughter, and so much of her time.

To the coworkers who have been there and done that, and done so gracefully.

To the grandmother who loved me without even meeting me, simply because Heather did.

To the longtime friends who have never stopped telling me they are proud and amazed.

To the people in my life who have accepted Heather into theirs “just because”.

Thank you.  From the bottom and top and sides of my heart.  Thank you…

…for coming to babysit when I didn’t think I had another minute of sanity in me.

…for letting me cry on your shoulders.

…for fighting for me and with me.

…for not caring that time Heather ruined Thanksgiving dinner.

…for the dance parties in the kitchen and the “I’ll be home in 10, go out somewhere!” texts.

…for dealing with me at my worst, and loving me the most.

…for knowing when I need words, and when I don’t.

…for drying my tears, and sitting with me in silence.

…for encouraging words, laughter, advice.

…for stepping in and stepping up when I didn’t think I’d make it.

…for checking in on me when things are tough, and being excited when things are status quo.

…for understanding when plans don’t happen, and for being available when they do.

…for thinking of logistical things, while I’m busy being emotional.

…for accepting me as part of your family, simply because I’m part of Heather’s.

…for including me in your lives, even when I’m a miserable human being.

…for telling me hard truths with soft words.

Most of all, thank you for opening your hearts to a little girl 10 years ago, and dealing with all that entails right along with me.

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She has come so far, partly because of me, and that is ALL because of you guys. We couldn’t have made it this far without you. I know it hasn’t always been easy, and it hasn’t always been pretty, but thanks for loving us.

And finally, a sincere apology:

To the 1:1’s who have had to deal with me first thing in the morning.  I’ve never been good at mornings, and I’m sorry that I couldn’t pull it together for your sakes.  Thanks for sticking it out!

Realistic Advocacy: We need the ‘bad’ with the good

Advocacy is a tricky thing. It is often confrontational, and many of us have a difficult time with confrontation. When it comes to our kids, we tend to add “emotional” into that mix. I have been in what seems like 4000 IEP meetings, as a head teacher at a residential school, as a parent, and as a member of “the team” for kids on my caseload in my current position at CAR. I have been on all sides of the table, and feel like I have a pretty good understanding of what each role brings to that table when they arrive.

During my first IEP for Heather, after she had lived with me for about 6 months, a communication specialist said the words, “Unfortunately, because she is 11 years old, the literature does not support that Heather will make any more gains in this area.” A number of things went through my mind, such as hope that I had never said anything so insensitive to parents of my former students. I was appalled that a “professional” would say such a thing at all, never mind to a parent. I was not expecting a magic spell that would suddenly unleash full sentences from Heather’s mouth, but there were many factors involved in her lack of communication skills, including the fact that she spent the first 10 years of her life in a predominantly deaf home. I was also considering the fact that in a mere 6 months, she HAD made gains in her communication, not only by learning new words, but also correcting words she previously mispronounced.

I’m not sure what I actually said in response to the ‘literature’ that did not support the gains my girl was, in fact, making, but I do remember walking out knowing that I would never ever let anyone tell me what Heather would or would not be able to do.

Since then, I have learned that are some battles we fight, and some we don’t. Some we write letters about, some we quietly gather information from any source available, and build our case. There have been battles I have won, and some that I have lost, and I’m ok with that. One of the biggest things that I have taken away from the last 10 years is that in order to get Heather the services she needs, we need realistic reports. Unfortunately, that means negative reports. I need the accurate and honest report that says she functions at below kindergarten level in all areas, at 20 years old. Do I like hearing it? No. Did I cry through an entire IEP meeting when they listed off the data on her negative behaviors- upwards of 90 aggressive episodes in 3 months? Yep, sure did. But that report got her the 1:1 support that she needs to thrive.

As I look towards 21 (in RI, transition happens at 21, not 22), I am being asked about graduation and diplomas, and how she needs one more alternate assessment if I want her to get a diploma. Honestly, I understand that some parents want that for their child. But, for me, I really do not want to waste any time in her LAST year of legally guaranteed education on any sort of assessment. I want her in the classroom, or on the field trip, or doing her vocational work. I don’t care about a piece of paper at the end of the year, because it’s not going to change anything about what happens next. What matters is what she learns- and I will squeeze every ounce of learning out of her school.

The other thing that matters is the reports. The assessments. The incident reports. We all want to hear wonderful things about our kids. But if we have reports full of pretty narratives that list off all the amazing qualities that we already know, and then we send those to DDS, and ask for services, we’re in for a fight. I know how amazing Heather is. I know she is funny, and bossy, and loves to “work”. I know she thrives on the thought of helping someone. Those things make her awesome, but they don’t get her services. Those awesome things about her become apparent once you get to know her, if she has the right support. Unfortunately, without all the honest, accurate, and yes, “negative” reports, she won’t get the right support. I need the reports that say, without 1:1 support in all settings at all times, Heather is a danger to herself. And sometimes to others.

With support, Heather is awesome. To get that support, we need to be honest about the not so awesome. And I’m ok with that.

Life Lessons Unexpected

Heather came to live with me as a foster child in 2005.  I was 23 years old, and had been working in residential schools and groups homes for a few years.  I was burned out, and knew it would only get worse as time went by.  So, some genius part of my brain decided that providing foster care for kids with special needs was a brilliant idea.  For the most part, it was.  But not in the ways I expected.  The visions that I had in my head are so embarrassingly naive that I won’t even put them on paper.

9 years and 7 other foster children later, Heather is still with me.  She is different, I am different.  But I am 100% certain that she has taught me more than I have taught her.  I have taught her how to say words more clearly. I have taught her how to do a better job brushing her teeth.  I have taught her how to NOT hit people in public, or spank old ladies bottoms in the grocery store.  I have taught her how to look both ways in the street, and how to hold my hand, because after looking, she still books it straight into the path of oncoming vehicles.  I have taught her to tell me BEFORE she tries to “help” with the laundry, because whatever she’s thinking of doing, it’s most likely NOT helpful at all.

None of these things are unimportant…. but they are not anything like the things she has taught me.

Beauty.

We are beautiful.  We are, every one of us.  It doesn’t matter what the magazine cover says, or the billboard, or the women on TV.  Heather doesn’t fit any of those “ideals.”  And yet, she looks in every single mirror and says, “Cute, cute” or signs “beautiful”.  Because she’s ever-observant, she even turns around and checks out her behind.  I have no idea where she got that. Ahem. She asks for make-up, and a little bit of loose powder and lip gloss is all she needs to look even more beautiful.

If she recognizes that she doesn’t look like that magazine cover, she doesn’t let it affect her view of herself.  She believes she’s beautiful.  And she is. And it gets me thinking that our views perhaps (definitely) rely too much on what we see and hear, and not enough on who we already are.  We are beautiful.  In different ways, but beautiful none-the-less.

Forgiving and forgetting.

She’s got a great memory- she remembers the dance her grandmother taught her when she was 5.  She remembers that one time we took a left to get ice cream in some random place, and insists on going “leeeeft” every time we pass that road.  But she doesn’t remember the time(s) I yelled at her because I was having a bad day.  She doesn’t remember the time my sister accidentally elbowed her in the face.  She doesn’t remember the time I didn’t take her to the playground and we had a huge argument about it.

There have been too many times when I have acted badly, selfishly, ickily… but all she remembers is that I love her.  That I’ll wake her up every morning, and send her off to school.  That if she asks for a hug, I’ll give her one.  That if she wants to sit on my lap with all 19 years of herself, I’ll slide over on the couch to make room.

Some people might argue that she doesn’t have the capacity to remember things, but I think she chooses (whether consciously or not) to forget the bad and remember the good, because it benefits her and makes life more pleasant.  Why can’t I realize that forgiving and forgetting benefits me?  That it makes life more pleasant?

Excitement and Joy.

This girl gets excited about anything.  She finds joy in things that I find ridiculous.  The other day, we were driving to school, and she took a HUGE breath, and squealed in delight…..as we passed a garbage truck.  “ooooooh garbage!!!!!!!”  A garbage truck.  She is thrilled when we pass a CVS.  If I buy her a new notebook (not even a Five Star), she will thank me for hours.  She loves MACK trucks, and will tell me the color of every single one we pass.  “Big orange truck”, complete with hand motions showing me exactly how big the truck is.

I, on the other hand, don’t give a hoot about the big truck.  In fact, it’s in my way.  The garbage?  I have to drag that to the end of the driveway, and frankly, it’s annoying.  Granted, not many people enjoy taking out the trash, but the point is that we can all make more of an effort to find excitement in life.  To find joy in the little things.  To overlook and overcome the feeling of dread at the day-to-day tasks that we all face, and find some joy in something, somewhere, somehow.  I gotta say, the ear-to-ear grin on her face sorta makes me like the garbage truck!

 

We do a lot of teaching as parents, teachers, and providers of kids with special needs…. But when we stop to think about it, we do an awful lot of learning too.  There’s joy to be found in that.  And in garbage trucks!

Welcome!

Dear Readers,

I have a social media phobia. I do not have a personal FaceBook account; I do not “tweet” (I don’t even like that word, unless we’re talking about the sound a bird makes) and up to this point – I have not blogged (with the exception of a course I took, and even then, it was under duress and for a grade); nor do I take part in virtual social worlds (although there are days when a virtual world seems more appealing!) My problem with social media is that, while it’s great to share information, I have found that it can be abused. Sometimes people can be cruel and judgmental in a very public way. It’s easy to do this when you can type and not look someone in the eye and say what’s on your mind directly.

So here I am blogging and no course grade is involved. Here’s why…

Lori, our Autism Specialist and Event Coordinator felt that Community Autism Resources should start a blog. She thought it would be another way for us to get connected to our families; another way to exchange information; another way to find out what people are thinking about certain topics. It also meant that someone could do this from the comfort of their home – without having to travel to a meeting. It meant that a parent could write –when they had the chance to write (I tend to do my writing after everyone is asleep and I can finally catch my breath.) All this made perfect sense to me. Since we were starting a blog, I knew I wanted to be the person to introduce it, the thought being – if I can do this, anyone can. I also have to trust that we’ll build a respectful relationship while exchanging ideas.

So welcome to the Community Autism Resources Blog.  Please bear with us as we work to customize our appearance.  Twice a month, a staff member of Community Autism Resources will post a blog on a specific topic. It might be on an upcoming event; it might be thoughts on special education rules and regulations – things helpful for parents preparing for their child’s I.E.P. meeting; it might be comments on the newest research; or our feelings about what happens when our children become adults (my son just turned 30 years old.) We might just share our thoughts about what’s happening in our understanding of Autism Spectrum Disorders and how this affects our sons and daughters. But the most important piece of all this is hearing from you. We want your thoughts and opinions about the things we blog about. We want the exchange of ideas, knowing that this give and take of information is so important in helping our children and expanding our points of view.

If you have a topic you want us to blog about, please give Lori a call (508-379-0371, ext. 10) or email her at loridecrescenzo@community-autism-resources.com.

We hope you’ll join us here- Happy Blogging!

Barbara Domingue

Executive Director