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?

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.  

 

 

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.”

 

An unconventional To Do list

“have a tickle fest with the girls”
“be completely present during the afternoon”
“sit down on the couch and read to the girls”

These are some of the action items that have been on my To Do list this past week.

I’ve have very recently discovered Abundant Mama.  Check it out.   It’s about finding peace, playfulness, and connection amidst the craziness that is motherhood.  I signed up for Shawn’s 10 Day Rise & Shine Challenge because I was looking for inspiration to continue the recent habit I had taken up- getting up early before the rest of the family.  One thing Shawn suggested in that Challenge was to think daily about what it is that I am feeling that I need, and to pick the top one that will make that day the best day it can be.  This challenged me to think about my day in a different way.  Rather than thinking about traditional To Do’s, it got me thinking about what I truly need that day in a broader sense.  I started including things on my To Do list that allowed me to stop and enjoy moments.  More connection with my girls.  More being present.  I still put traditional To Do’s on my list, of course, but I also added to my list things that encouraged me to really be present and connect with my children and with the day.  I do believe that sometimes it’s completely necessary to have a “get a lot of stuff done” day.  But I was finding that most of my days were like that.  I was getting lost in all of life’s to do’s and not stopping to just enjoy the small moments, to enjoy life with my family.  It’s true what they say “The days are long, but the years are short.”

I also started writing down an intention for the day.  My intention has been the same for the past week:

“When my child’s behavior escalates, I will respond in a calm and loving manner, and I will ask myself  “how do I want her to remember this moment?”

I wrote this intention with Alexa in mind.  I find myself becoming very frustrated with how fast her mood changes and how quickly she can escalate from completely fine to completely whiny and in meltdown mode.

Last week was a great week to set this intention.  She went back to school (preschool 3 mornings a week), wasn’t feeling 100%, and has recently stopped napping.  I set the intention and on that same day I had a wonderful opportunity to put it into action.  After picking her up at school, she had one of those meltdowns.  The I’m-Over-Tired-And-Not-Feeling-Well-So-I’m-Going-To -Go-Ballistic Kind of meltdown.  Through her hysterical crying she told me that she needed my help “calming her body down”.  So I laid down with her in her bed and as difficult as it was, I remained calm.  In a low and patient voice, I soothed her.  After what seemed like an eternity, she sobbed “Mommy, can I please have some princess oils?”.  “Princess oils” are essential oils that I have been using on the girls.  There’s one in particular that I use that promotes calming.  “Do you want the Calming?”, I asked.  She nodded.  “And cold water with ice”.  By the time I got back with those items, she had calmed down a lot.  I put the oils on her and gave her the water.  I laid down with her again. She turned to me, lifted her little hand to push my hair out of my face, and said “Mommy?  I love you.  You’re the best mommy in the world.”   The look in her eye told me that she understood and appreciated the patience I had shown her.  Believe me, it doesn’t always happen that way.  Remaining calm when a child is pushing all of your buttons is HARD.  Having that sentence to repeat in my head helped me remain calm and respond rationally.

If you’re reading this, I challenge you to add a “To-Do” action item to your list that will help you be more present with your family, or that will create some silliness, fun, and laughter in your household.  Here are a few ideas to get your started:

*”unplug” between the hours of xx and xxx.  No computer, cell phone, or TV.  Be present.
*put on music and have a mini-dance party
*if you have small children, be a “tickle monster” and run around catching your child/children
*take an hour for yourself and get a pedicure
*find a quote that speaks to you and write it on your calendar or post it on your refrigerator and let that be your “intention” for the day or for the week.

What are you doing to do to take care of yourself or your family tomorrow?  Let me know in the comments!

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.

 

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

HappinessCrossed outWhile 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.

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

COFFEEThe 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.

I have shared my timeline for the next few weeks below.  I have a lot to do before August 13th!

Before the 1st day of school:

  • create my “Introduction to Sabrina” to give to teachers, aide, service providers, staff.  This is a document about Sabrina.  I write about who SHE is as a person, what she likes to do, and include some cute photos of her so that they can see her in action.  I try to highlight the positive, and give strategies that I have found useful.
  • organize IEP highlights/goals to give to each teacher/service provider, etc.  Each person will have a custom document that outlines only items pertinent to them (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 Communication book page (that goes back & forth between home & school), if applicable
  • print out 2nd grade marker for Sabrina to hold for her “1st Day of 2nd Grade” photo
  • contact Program Specialist- touch base on outstanding items
  • back-to-school shopping, ie backpack, lunchbox, supplies, and any new clothes
  • order name stamp for her to “write” her name on her work at school

First week of school:

  • (First day): Take “1st Day of 2nd Grade” photo
  • Introduce myself to RSP teacher, Speech Therapist, Occupational Therapist, Behaviorist, AAC Specialist, any other staff
  • Touch base with teacher regarding volunteer opportunities outside of Yearbook Coordinator position
  • Review AAC outcomes and discuss possible AAC goal with AAC Specialist

Second week of school:

  • put rest of IEP items on timeline (progress report check-ins, etc)

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

Back From Maui

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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.

Photos really are the best way to describe the trip.

Here’s Sabrina at the airport, during dinner, waiting to board the plane.  All smiles.

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Sabrina in the plane, before take off.

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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.

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

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

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At the luau.

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Sassy Alexa.

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Sisters at breakfast in Lahaina.

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A sensory heaven for Sabrina.

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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.

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Sights of Maui.

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Me. Enjoying some peace at the luau.

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And finally, on the plane on the way home.  This was right before Sabrina zonked out for the entire flight, which was a red-eye.

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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. :-)