Some Monday Inspiration

“People try to define who I am, but I’ll do that myself.”  -Brandon Gruber

Last Friday I had the pleasure of meeting Brandon Gruber, a teen who was recently featured in People Magazine. He was featured not because he was homecoming king and has Down Syndrome (although both are true). He was featured because after he was crowned homecoming king he decided to open doors to others who don’t feel included.

Last year he raised $20,000 by selling his artwork and accepting donations, and all of that money was used to provide financial support to those who were unable to pay for prom, yearbooks, camps, and more.

If you wish to purchase cards with Brandon’s beautiful artwork on it, or just want to check out his story, visit his site at www.321life.com.

Why comments like “She could work in a kitchen” suck.

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Sabrina, 2 years old.

In January 2009, when Sabrina was 2 years old, I took her to see a Clinical Psychologist at a well-known and well-respected hospital/research center. Sabrina was to get full psychological and developmental testing. I don’t know what I was looking for that day, but with a child showing significant developmental challenges, it just seemed like the thing to do.

It turns out that in addition to not learning anything helpful, I also got dealt a bit of unwelcome news. At the end the session, without warning, the Psychologist wrapped up the session by declaring that Sabrina had cognitive deficits and that one day she could get a job “working in a kitchen”. She said this in such a way that suggested that I should feel comforted by the idea.

I was completely taken aback. I originally thought she might give me some insight that would help Sabrina reach her full potential- some insight as to what approaches may work best for her. I certainly wasn’t expecting her to tell me where Sabrina would be when she was an adult. At that point I was just thinking about where we were going to enroll her in preschool!

She must have thought that she was doing me a favor, that perhaps I was worried for Sabrina’s future and that she was giving me hope.  Or perhaps she thought that her job was to give me reality check.

Sabrina was only 2 years old.

Already at age 2, someone was limiting Sabrina based on test scores- limiting who she could be one day.

At the time we were very aware of Sabrina’s challenges, and that she may never talk, may never do a lot of things.  But up until that point, I hadn’t considered what Sabrina’s adulthood might be like.  And at that point, I don’t think that I needed to.

I allowed these test scores and predications to change the way I looked at my daughter. At the time I sort of knew better, but not enough. I didn’t have the experience, the knowledge, the advocacy skills that I do now. I didn’t know anything about disabilities.  And I was scared.  This woman was a professional, and her words were all I had.

Now, there’s nothing wrong with working in a kitchen. If that’s what makes Sabrina happy and what she enjoys, GREAT! But, what if it’s not what Sabrina enjoys? The professional didn’t suggest any other options, and her tone and delivery didn’t leave me excited about the possibilities for Sabrina’s future.  It calls to mind professionals in the 50’s and 60’s telling parents of babies and children with disabilities that they should institutionalize the children, as this is the highest calling they’d reach in life. Although this may sound like a harsh comparison, isn’t the professional in both situations putting limits on the child?

This clinician actually specifies on her website that she’s interested in helping parents understand their children’s unique strengths, but what about Sabrina’s strengths informed her opinion that Sabrina could work in a kitchen? What about that statement empowered me to build on Sabrina’s strengths in order to maximize her potential when she got older, and to use those strengths to help Sabrina find something she could find pride and accomplishment in?

Now, 7 years later, I know that Sabrina’s challenges are significant.  And yet, my vision for her future, is set much higher than it’s ever been. For the first time I’ve allowed myself to envision her life as an adult, because I see possibilities.

Those of you who know Sabrina now she’s social. She has an amazing smile, she loves meeting new people and engaging them.

For the first time, I see possibilities. The jobs that Sabrina has at school has opened my eyes to what she can do someday if given the support.  It’s opened up my eyes to how much she truly gets enjoyment and satisfaction out of doing a job where she knows what’s expected of her, and how proud she is of herself when she accomplishes something.  I can see how she fits into a community and how she can be a valued member of that community.

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Sabrina, age 8, carrying out her library helper duties at school.

Could Sabrina, with the proper training and supports (perhaps with the assistance of a job coach who specializes in working with clients with disabilities):

  • hold a position as a greeter or hostess?
  • work for a delivery service, where she gets to see people regularly?
  • work for a local parks and rec department?
  • use her love of music and dance to work in a theater?
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Putting books back on the shelf.

Perhaps.

I don’t know.

But neither does this professional.

I’m willing to bet Sabrina can do something that is interesting and meaningful to her, and that contributes something of value. And I’m willing to bet she will.

11 Ways to Build Positive Relationships with Your Child’s IEP Team (please tell me you’re already doing #11?)

I get a lot of questions about this.  Full disclosure: I think I have very positive relationships with Sabrina’s IEP team; however, I can’t take full responsibility for that.  Sabrina’s team happens to be wonderful.  Nonetheless, there are definitely things that you can do to help those relationships, and much of this could be a result of the fact they know that I am reasonable.

1. Vision Statement | I think it’s very important to know what your goals for your child are.  And if they’re old enough, what their goals for themselves are. Read about our vision statement here.

I’ve noticed in the past that staff sometimes assume what your priorities are. In our case, they were originally under the impression that we had certain high standards as far as where we expected Sabrina to be academically.  That just wasn’t (and isn’t) so.  Yes, we always want them to presume competence, and part of our reason for wanting her involved in the general education curriculum is so that she can be exposed to more, which believe will help her reach her full potential academically.  However, we never expected them to bring her up to, or even close to, grade level. That’s just not going to happen.  For us, our main goal is that she learn to live in the community and that the community learn to live with her.  Once the team understood that, they softened.  They relaxed.  And because they  understand our vision, they understand why we want her in the gen ed classroom as much as possible.  Because that’s her *community*.  All of a sudden her being in there made more sense.

I pretty much knock people over the head with ours.  I start every IEP meeting with it.  I email it to every new team member, and I email it at the beginning of the year.  I often will plug the important parts in conversations with the team as reminders or “Yes, what’s most important is that Sabrina learns to live in the community, so I love that you are …”

2. Volunteer | Be involved. Don’t be just a “special needs parent” who requests.  Be a parent who contributes.  Volunteering will look different for everyone. For me, I get anxious being in the classroom sometimes, so I contribute in other ways.  For example, I’ve acted as the Chair of the Yearbook Committee, and of the Holiday Store.

3. Smile and Laugh |  Let them know you’re a person and that you’re enjoyable to be around.  Enough said.

4. Find an ally | Try to find someone who works for the district or school whom you trust and who trusts you.

5. Point out successes | People want to feel good.  They want to be appreciated.  And they want to feel like something didn’t go unnoticed.

6. Get to know the people higher up | It is mandated by law that all SELPAs have a Community Advisory Committee (CAC).  Why people don’t take advantage of this opportunity is something I don’t understand.  Well, I do… People are busy.  I get that.  But it’s a much better use of that time to attend monthly CAC meetings and build relationships than it is to try to repair relationships that were never strong in the first place.

You will have access administrative staff and get the opportunity to build relationships with people in a non-threatening kind of way. If people know that you know people in high places, they’ll most likely treat you differently. Is this fair? Not necessarily. But it’s the way it is, so use it to your advantage.

7. Be honest and transparent | Ask for help.| I’ve been known to walk into someone’s office, sit down, and just be honest.  Lay it out there. A “here’s how I am feeling and am wondering if you can help me or have any feedback for me.” goes a long way in starting an open conversation and building.

8. Remember that they get their paycheck from the school/district/SELPA | They may not  like certain policies either, but they can’t always really say that.  Their silence may not mean that they don’t like you or that they don’t agree with you.

9.  Remind them that your child is a child, not just a child with special needs |  Do this by telling them a little about who your child is outside of school.  A few years ago I shared with the team that Sabrina was swimming on her own. It went a long way in that particular IEP meeting when we were talking about Sabrina’s lack of participation in PE.  The mood shifted to “ok, she really can do something if motivated and sets her mind to it.”

10. Remember that it’s not only just about your own child |  I once heard Sue Swenson, Deputy Assistant Secretary for Special Education and Rehabilitative Services, keynote at an inclusion conference. She captivated me by the call to action she made to the group: don’t just advocate for your child.  If it’s good for your child, it’s probably good for many others, so advocate for those others, too. Yes!  Be seen as an advocate, as a change-maker, and ask staff members what they need to make something better for them, so that they can help all kids.

And I left the one that, in my opinion is the most important, for last:

11.  Be reasonable |  Please. Be. Reasonable.  Your child’s IEP team is made up of people, and people aren’t perfect.  Things can go wrong and they will.  No program is perfect.  There are so many components of most IEPs . Sabrina has speech, OT, AAC, modifications, sensory stuff, a behavior plan, then there’s promoting independence, maximizing participation, and on and on an on… I finally came to a point where I had to figure out what was the most important and let some of the rest go (to a degree…).  At one point, she wasn’t participating in the gen ed curriculum (via modifications) nearly as much as she needed to be.  That’s a big deal and I started to get myself really worked in.  Then I told myself “breathe. She’s an important part of the community at her school, in her classroom.  She’s loved there, she has friends, her day consists of doing things that are meaningful to her, she’s happy.”  Reminding myself of that allowed me to calm myself down, and take steps to improve the modifications in a way that would get results and not alienate people.  This is something I’ve really had to work  hard on.  It’s tough when the mama bear is dying to come out.  And, she still comes out. She just comes out in a calmer way now. For the most part. :-)

So when you feel a “freak out” coming on, ask your self this:  Are the most important things happening (see #1 above)? Is this really a big deal?   If it’s not, you may considering letting it go.  If it is, then you need to come up with a way to address it when you’ve calmed down and you’re thinking rationally.  

Modified homework- let’s share some examples!

A lot of people ask me if Sabrina has homework.

She does, although it is modified (mostly by the special education teacher).

The plan is that she gets homework packet on Friday for the following week.

Here’s a picture of what is included Sabrina’s weekly homework packet this week.  There’s a main cover page that outlines what to work on as far as ELA, Math, etc goes.

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She gets a spelling/sight word list and a Language Arts modified story.  Typically the gen ed language arts book gets modified for her, but right now her teacher is piloting a couple different LA programs, so it’s a bit tricky.  Her special ed teacher uses a special ed language arts curriculum with her when she’s in the Learning Center for 30 minutes a day, and the story you see below is an excerpt of that.

Pre-teaching is very important for Sabrina.  She isn’t interested in something when it’s first introduced, so by introducing some of these concepts at home before they’re introduced at school, it raises her interest level and ability to participate.  I highly recommend it as a way to get the child as ready for learning as possible.

Now it’s your turn- share some of your own modified homework examples, either on the blog or on the Facebook page!

Some soul searching

Copy of A couple of quick thoughts from PortugalAs I eluded to in my last post, I haven’t spent much time blogging here since the summer.  I’ve been feeling a lot of different callings and not sure what direction those were going to lead me in.  Sometimes it’s tough to figure out what you want to do when you grow up. :-)

I think for a lot of us, and certainly for me, life is about constantly questioning, learning, trying your best to fulfill the callings and the passions that show up in your life.  For many years I wasn’t living in a way that allowed me to have the confidence to listen, go forward, and pursue them.

Obviously, I have since found a passion in inclusion.

For the past 6 months or so I’ve felt an intense need to do something else, something more.

Maybe call it my mid-life crisis? :-)

I’ve been trying to work out how to fulfill the passion I have for advocating and for being “mom”, while at the same time honoring that I am my own person outside of those roles.

I want to be involved in the community.  To Connect.  To Gather people.  So much more to do on a lot of different fronts.  While still being present for my family.

Ooh, that elusive “balance”, right?

As a result of much of that soul-searching, and feeling deeply that it’s time for me to do something more, at the end of the year I launched Nelia Nunes Events.   I’m excited about the possibility of merging my passions, while at the same time exploring options that aren’t related to inclusion and my kids.  And seeing where it’ll take me.  

Time to plan some cool stuff.

For starters, I’m working on putting together a “Topics In Inclusion” mini-series. Look for more on this coming soon.

It’s been an interesting journey, I know it’ll continue to be.  Can’t wait to see what it brings.  Thank you for coming along on the ride.  

 

 

I’m back.

It’s been a while since I’ve written a blog post. It wasn’t intentional, but I really just found myself needing a break. This community has been overwhelmingly wonderful, and that fact is that there’s a lot of work to be done in the area of inclusion. And when you’re putting a lot into emotional work, it’s easy to get burnt out. Sometimes a break is just what’s needed to renew that passion.

Sabrina’s doing fine.  For the most part, we have a wonderful, well-rounded IEP team this year.  Her IEP is next week and I have thought less about this year’s than I ever have (and it’s a triennial!).  I’ll take that as a good sign.

She has been sick a lot.  Nothing serious, but just cycles of colds turning into ear infections turning into issues that go along with too many antibiotics.  Again, nothing serious, but just frustrating because even little colds set her back a lot.

I have some exciting things that I am working on in the area of inclusion, and I’m excited to share it with you.  Look for more in an upcoming blog post!

We’re back!

A couple of quick thoughts from PortugalWe’re back from our 3 week trip to Terceira, a Portuguese island in the Atlantic (one of the Azores islands).  Here are a couple of quick thoughts:

1. Honestly, I was nervous about going with Sabrina and didn’t know how children with disabilities were perceived.  I was very pleasantly surprised to find out right when I got there that in 2005 the islands got rid of all (but 1, as I understand it) special education schools/classrooms and now include all children in general education classrooms.  At the time the decision was met with some uproar, but it obviously caused a big shift in people’s perspectives about those with disabilities.  Everyone I spoke to was puzzled about why anyone would feel that separating a child with a disability with their peers is best for them.  Sabrina was treated with kindness, respect, and understanding there.  GO AZORES!!!

2. I feel strongly that we would never have been able to take a trip like we did had we not made the decision to include Sabrina.  Before inclusion, Sabrina was overwhelmed with all sensory information coming in.  Noises, new people, new places.  She still has significant sensory challenges, but she now knows how to deal with them better.  She no longer cries and shakes in a corner for 1 hour when we go to a new place.  I would never have subjected her (and us!) to taking her to a new country, where all sights, people, textures, foods, etc would be different.  She did amazing.  We had issues with her getting into everything, but that is typical and was manageable.  What’s important is that she was friendly, social, and so HAPPY.  Except for leaving the kids home one day while Ken and I shopped, she went everywhere with us.  She even stayed up and went to all of the “festas”- bright lights, packed with people, loud music.

I have to run.  Today’s Sabrina’s first day of 3rd grade (Nervous tummy!)  I’ll post back soon with another update.