The Words That Stopped Me In My Tracks

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We were hiking with 2 of Sabrina’s friends when I heard the words.

We had stopped to take a snack break. Sabrina was hoarding the can of Pringles, and we were all laughing about how she had pushed her friend’s hand away when the friend tried to get in the can (Sabrina’s can, apparently).   As we laughed, Sabrina’s sister gave her a huge hug.  And then heard the words.

“Sabrina, you are so loved.”

I stopped what I was doing and looked up and just stared.  I stared at her friend’s face, the one who said it.   She was looking at Sabrina with a huge smile on her face.  I looked at her other friend’s face, and it was completely unmoved, like those words had been casual words, and nothing out of the ordinary.  I looked at Sabrina, who was nonchalantly chomping away at her Pringles, unaware of how huge those words were.  Then I looked at my younger daughter’s face, Sabrina’s little sister.  She too was staring at the friend who said it.  I could tell it made an impact on her.  She looked back at Sabrina, and then gave her another hug.

Those words had a big impact on me.  I flashed back to 3.5 years ago, before Sabrina was at our neighborhood school, and how the thought of hearing something like that from one of Sabrina’s typical classmates would have been a complete dream.

Sabrina’s sister and I talked about it later, and she repeated the words to Sabrina.  “Mama, she said ‘Sabrina, you’re so loved’!  It was so sweet!”  They had a big impact on her, too.

This is why I love sending Sabrina to school every day.  Because Sabrina is building a little community of kids who see what a sweet little soul she is.  A community of kids who know her, who warmly greet her in the morning and say “Come on, Sabrina, let’s stand in line together.” A community of kids who are excited about and proud of her accomplishments, no matter how small.

Isn’t that what any parent wants for their child?

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.

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.  

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.  

 

 

About Me

I wanted to share my draft of Sabrina’s About Me page for next year. It’s just a draft at this point. I am going to add more admirable characteristics, and I realize at least one bullet is incomplete. Just wanted to share my format and the general outline in case it can help anyone get theirs together.  I typically work on this on the summer, but this year I am getting it done before the end of the year so that I can remember specifics better.

https://www.dropbox.com/s/zn353h97tfnp47r/About%20Me.pdf?dl=0

The importance of a vision statement

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 Our Vision for Sabrina is that she will be an accepted member of the community. She will have friends, be loved, and find connections with people. She will learn to effectively communicate her thoughts and desires. She will be given frequent opportunities to make choices. She will participate in activities that she enjoys, that she can feel proud of and that give her a sense of self-worth. She will frequently have a smile on her face and a sparkle in her eye.

This is our vision statement for Sabrina.  It was created in the summer of 2013, right after I decided to advocate for inclusion for Sabrina.  We have since tweaked it a little bit, but the main point of it has stayed the same- that she’ll be a member of the community.

Everyone’s heard the cliche that if you don’t know where you’re going, you’ll never get there.  I learned about vision statements in  Julie’s Causton’s Inspired Advocate web series.  Having this vision statement has helped me tremendously along the way.  When I’ve felt like giving up or when I’ve been unsure what to do in a particular situation, having this vision statement to go back to helped me clarify what was important and gave me the motivation and inspiration to keep going at it.

I read it at her IEPs (although I just realized that I didn’t read it at the last one- oops!), and give it to her IEP team at the beginning of the year.  It’s important for everyone on her team to know what our vision is for Sabrina, and why we believe in inclusion.

If you have one, please share your vision statements for your child in the comments!

 

Inclusion doesn’t just benefit children WITH disabilities-a note from a teacher

The following is from Nancy Preto, Sabrina’s 2nd grade general education teacher.  Please read the whole thing, especially if you have any doubts about inclusion for a child with significant disabilities like Sabrina.

“I wish I could do a “mind meld” and give you the picture and thoughts I had today. My heart absolutely grew just watching the whole story unfold. In my mind I reminisced over the entire year. The obvious growth of Sabrina … Her language, her connection to people, her established routines, her desire for more routines, etc. I couldn’t stay in my classroom after school today. I wandered campus and every time I ran into someone I had to share the beauty I saw today. This year I know Sabrina has grown. That story has been a joy to tell and read on this page. I need to say to everyone reading this that there is so much more to the story of Sabrina’s year in second grade. She has brought to my classroom compassion, friendship, and understanding. Her classmates have learned about waiting their turn. They understand and appreciate other people’s learning style. They enjoy and thrive in being helpers. They read more stories to Sabrina than I would have dreamed! Sabrina is loving and kind. Kids are loving and kind when they are with her. Sabrina is happy. Kids are happy when they are with her. Sabrina wants to communicate. Kids communicate when they are with her. Sabrina wants to learn. Kids love to help her learn. Sabrina had given the kids in my classroom many gifts this year. The best gift of all was what Sabrina gave to me. (Long pause… So much to say…) In a nutshell … She gave me a tremendous challenge which turned into one of the greatest joys of my life. I absolutely love Sabrina and her family. I have so much respect for their commitment and passion. I have no limits for Sabrina.”

 

Mrs. Brown Went to Town, or Getting Sabrina to participate

I say it over and over again. One of the main reasons we wanted Sabrina in a general education environment was so that she could learn how to live in the community, and her community could learn to live with her. How to live in the community is very important to us. That’s our main goal. Our goals for Sabrina’s learning are different from most of the kids in her class. Different, but not less important.

Last week Ken and I sat down with Sabrina’s team.  One of the topics was how Sabrina could spend more meaningful time in the classroom.  Her teacher brought up reading time as a potential area of growth for Sabrina.  She spoke about Sabrina’s lack of interest in coming to the floor with the rest of the class for reading time- she prefers to sit at her desk and isn’t engaging with the story.  She mentioned this as an area where she felt Sabrina could participate and suggested that we pre-read the Reading textbook to Sabrina with the goal that perhaps by Friday she would be ready to join the other children during that reading time.  We took the book home and over the weekend we read it to Sabrina a few times.

Here are excerpts from the email communication that happened between me and her teacher that following week:

From me that Sunday: “Thank you for loaning me the Houghton Mifflin Reading book and for sending home the “pig book” for Sabrina… We have been reading her this week’s story “Mrs. Brown Went to Town” over the weekend. She was not interested in it the first time or two, but now sits through the whole story.”

From her teacher on Monday: “Sabrina came to sit on the floor with the early readers this morning. She’s never done that before.  ….I thought I would read Mrs. Brown…Sabrina sat through 2 pages and looked at the book the whole time.  This was a great step for her!”

From me on Tuesday: “Just a side note that Sabrina is now carrying that Houghton Mifflin reading book around with her all over the house and constantly asking us to read it to her!”

(Sabrina was home sick from school on Tuesday and Wednesday.)

From her teacher on Thursday: “Yay!  Sabrina sat and listened to the entire story of Mrs. Brown.  She smiled at me while I read and had eye contact with me or the book for most of the story.”

And so there it is. On her second day of being in school after first introducing it, she came to the floor with the rest of the class and was engaged with the entire story.

This little story says a lot about inclusion:

Her teacher saw an area of growth for Sabrina.  Instead of taking the position of “She’s having behaviors and won’t do it”, she took a collaborative, positive, problem-solving position of “How can we help her do this?”.  She used information she knew about Sabrina- that she likes familiar stories- and used it to find a simple teaching strategy to help.

Her teacher clearly understands that the goals for Sabrina may be very different from the others in her class, but that they’re not any less important.   Her excitement with Sabrina’s progress clearly comes through in her emails.  She cares.  A lot.

Sabrina is participating on her own level with the rest of the class.  She may not be able to answer the kinds of questions that the rest of the class is answering about the story.  But she can work on a lot of her other speech and academic goals through this story, the same story her peers are engaged in.

Everyone talks a lot about the benefits of inclusion on the special needs child.  But how about the studies that show that it benefits the other children in the class?  The stuff going on here- collaboration, problem-solving, modifying the lesson for different learners- it helps all children.

Oh, I can go on and on.  And I will in another post.  :-)

I’m just in love with some of the things that are going on this year.

 

Back to school: Then & Now

Then & NowThen & Now.  Ah, what a difference a year makes.

Her first day of school last year was also her first day in a General Education classroom, at our home school.   Look how smiley she was on that day.  I was all smiles on the outside, telling her how exciting it was that she’d be going to a new school, but on the inside I was a complete wreck.  I can’t even begin to explain the feelings that I was experiencing that day.  I was sending my non-verbal baby off to a school where she knew no one.  And actually, I was ok with that part.  But no one knew her.  They didn’t know who she was nor what her attempts at communication meant.  They didn’t know how sweet she was, how happy she would be to be there, how beautiful her little soul was, that she “gets it” more than most people think she does.  I had no idea how she’d be received, how the other kids would react to her, if she’d connect with any of the adults. I was getting ready for constant assessment and for the fight to prove her right to be there.   Was I making a huge mistake?  I knew deep down that I was doing the right thing, and that I had to fight for what I believed in. I reminded myself that I had known from the start of setting this in motion that it wasn’t going to be easy, but that I’d never forgive myself for giving up because it was hard.  I had to get through the hard parts.  I knew I was in it for the long haul.  I reminded myself of this quote that I had posted to Sabrina’s Inclusion For Sabrina Facebook page that morning:

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Fast forward 1 year.  On her first day this year, I was a little bit nervous. But not a lot.  I had a great meeting with her team the previous day, I had met (and really liked!) her new teacher, and I knew she’d have the same Instructional Assistant, which all made me feel more comfortable and less anxious. But more importantly, I knew she was going back somewhere where she was welcome.  There was a plan in place for her.  Staff who knows her.  Kids who know her.  People who were excited to see her.

We’re 3 days in and so far, so good.

I love her teacher.  She seems open, warm, and welcoming to Sabrina.  She has ideas to incorporate Sabrina’s favorite thing, music, into her classroom.

She has a great team this year.

We have a lot to do, but a lot of the foundations have already been put in place, so now we can tweak, fine tune, and we can learn from our past experiences.  Now we have past experiences there.

It feels really good to be back.