The Words That Stopped Me In My Tracks

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?

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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.

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We Finally Did It — Our Trip to Disneyland (with lots of pictures!)

There are a lot of people who love Disneyland and get excited about going often.

I am not one of those people.

I don’t remember what finally got me to change my mind about going, but I think it was a blog post I read where someone described their trip and it got my rethinking the experience we could have.

And so a couple of weeks ago we, along with my parents, took the kids to Disneyland for the first time. My parents came with us. Up until the night before we weren’t even sure we were going to make the trip, since Sabrina had been sick. We ended up deciding that she was well enough to go, and that if we waited for everyone to be sniffle-free, we’d never go.

We had a wonderful time. I wasn’t sure how Sabrina would do with all of the sensory stimulation, but she did great. I know she wasn’t feeling 100%, but was just a trooper, anyways!

Here is a sweet moment between the girls while waiting to visit the fairies.

I loved the characters at California Adventure, like Doc McStuffins and Sofia the First. Something about the fact that they’re in our living room so much – they’re probably Alexa’s 2 favorite shows right now, and we allow her to watch TV in the morning after she gets up and before getting ready.

Alexa and I stood in line to meet Elsa and Anna, and when it got to be our turn, Sabrina walked up to them. She was very hesitant, but Anna was really sweet, gave her a huge smile, and reached out to her.

Snow White was sweet and sensitive to Sabrina, too, although I didn’t get a picture of that.

Sabrina loved the street dancers and the music in the streets.

My plan was to enjoy the moments and not feel pressured to do and see everything. And we did just that. We went with the flow and put no pressure on ourselves to see or do anything in particular. It worked well for us.

There has been a lot of controversy about the new DAS pass. The new system is that you go to a kiosk to let them know what you want to ride and they give you a time to come back to that ride so that you can go through the Fast Pass/alternate entrance and not wait that time in line. It totally worked for us. I can see that if you go often and have a routine down with the old system, that the new system is a change, and that can be difficult for people. But honestly, we found it to accommodate our needs perfectly.

We definitely stuck to the younger rides, more due to Alexa than Sabrina. At one point we went on the Roger Rabbit’s Car Toon Spin. You can choose to spin the wheel in order to spin the car. I was in the same car as Alexa, and Sabrina was with Ken. We were right next to each other, so we could yell over to each other. Alexa was a bit scared and wanted me to keep the wheel steady. I looked at Ken and Sabrina and he was spinning the wheel like crazy. “Do you remember who you have in your car?!”, I yelled to him. “Sabrina loves it!”, he responded. Yes, she loves movement. But had he forgotten that she also gets motion sick?! 🙂

We went swimming on our last morning there.

The indoor heated pool was nice, but Sabrina LOVES HEAT. So after swimming in the pool for about 20 minutes, Sabrina suddenly ran out and jumped into the hot tub. The huge smile on her face was priceless. Of course, we all had to follow.

Great trip, great memories. We may even go back soon. I’d love the excuse to do this again.

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Some soul searching

As 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.

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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.

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Back to school: Then & Now

Then & 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.

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.

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The Happiness Project series that I won’t be writing. Because I want to be happy.

While in Hawaii, I started reading The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun, by Gretchen Rubin.

The author lives a “good” life by most people’s standards, yet she finds herself feeling like she should be enjoying and appreciating it more. She decides to spend a year devoted to trying to define her own happiness and devotes one month to each topic she wants to focus on.

I was drawn to the book and the idea – it made me think about some ongoing changes that i am aware of wanting to make in my own life. After all, life is a constant process, right?

As a result of her best selling book, people have started their own “Happiness Projects”. She even has guides on how to start Happiness Project groups.

Suddenly, a ton of ideas went through my head… I’d start my own project and ask all of you to join along. I’d plan out an area of focus each month, I’d have a Hapiness Project blog series where I would post regular updates and have everyone comment on how they’re doing with their project… I even put together a graphic for the series. The ideas went on and on.

And soon after, my INTUITION kicked in.

One of the areas that I planned on focusing on first, one of my main problem areas, is UNCLUTTERING. Not only physical clutter, but mental clutter. Thoughts of all of the things that I want to accomplish, of all of the things that I “have” to do.. they clutter up and overwhelm my mind. And yet here I was, cluttering my mind and my calendar and my To Do list even more… in order to plan a project… that was supposed to help me unclutter… Doesn’t make sense, does it?

No official Happiness Project for me, then.

I haven’t had this blog for long but I LOVE it. I love that it’s helped people. I love that I have a way to record our life. I love that it makes me a better mom – more aware of my thoughts of feelings, and it makes me more thankful for the small things. And I love that it allows me to be part of an even larger community than I had before. I want to continue to love this blog, and not turn it into something that I “have” to do.

I’m still planning on working on all of those things that I mentioned above – uncluttering, letting go, being present, etc. But I am going to do it on my own timeline, and I am not going to commit to writing a blog series on it. I’m going to continue to work on my own personal growth, trust my intuition, and see where it takes me. And I’ll continue to share that with you along the way.

It feels great to have all of that off of my To Do List.

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Creating an Introduction to Sabrina, and other things to do before school starts

The first day of school is right around the corner… YIKES!

Sabrina starts back on Wednesday, August 13th.

I typically have a list of action items that I want to take care of when school gets back in session, but a lot of it just doesn’t happen. Time slips away too quickly. This year I am trying to organize myself in a different way so that I can hold myself accountable and actually take the steps that will help Sabrina (and everyone!) have a better school year.

This year I am writing everything down in timeline form and making sure to check everything off. After school starts (I have enough to keep me busy until then), I will review her IEP and put all action items into a timeline.

Before the 1st day of school: create my “Introduction to Sabrina” to give to teachers, aide, service providers, staff — a document about who SHE is as a person, what she likes to do, with cute photos, highlighting the positive and useful strategies; organize IEP highlights/goals into a custom document for each teacher/service provider (Sabrina’s IEP is 52 pages — who’s going to read all of that? Me, I suppose); create a social story about back-to-school to read to Sabrina — write, illustrate, print and laminate; take Sabrina by her new classroom; introduce myself to her new teacher; arrange a meeting with the Principal; revise the Communication book page that goes back & forth between home & school; print out a 2nd grade marker for her “1st Day of 2nd Grade” photo; contact the Program Specialist to touch base on outstanding items; back-to-school shopping (backpack, lunchbox, supplies, new clothes); order a name stamp for her to “write” her name on her work at school.

First week of school: (First day) take the “1st Day of 2nd Grade” photo; introduce myself to the RSP teacher, Speech Therapist, Occupational Therapist, Behaviorist, AAC Specialist, and other staff; touch base with the teacher regarding volunteer opportunities outside of the Yearbook Coordinator position; review AAC outcomes and discuss a possible AAC goal with the AAC Specialist.

Second week of school: put the rest of the IEP items on the timeline (progress report check-ins, etc).

What do YOU all do to get ready for school? Did I miss anything important?

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Back From Maui

We are back from our 1 week trip to Maui, Hawaii. It was amazing. We all such had a wonderful time, and we really enjoyed spending that time with Ken’s family. Before we left I posted photos of 1 of the 2 social stories that I made for Sabrina. This was the first time that I had done something like that, but I’ll definitely be doing it again. I think that she really got a lot out of it. She clearly enjoyed looking at it, and I think it really helped her be comfortable with the trip.

Our condo had a view of both the beach and the pool, and Sabrina set her sights on the pool. When it was finally time to go down and swim, she ran ahead of us and jumped right in.

I was able to get away for a few morning walks on the beach.

We had some “ears” as we call it (after all, there were a lot of new sounds, etc), but overall Sabrina was very happy.

Ken’s parents and a family friend watched the girls so that we could go parasailing with Ken’s sister, brother-in-law, and nephews.

This was right before Sabrina zonked out for the entire flight, which was a red-eye.

We were all sad to leave Maui, but if I had to guess who was the saddest it would definitely be Sabrina. In Maui Sabrina was able to enjoy warm weather, she got to be outside all day and evening, and she got to swim all day. Her dream vacation. 🙂

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