Around Here

photo 1-3I love it when people write “Around Here” posts, giving snippets of their everyday life.  I love getting a peak into people’s routines and their “normal”.  Here’s a shot at mine:

Around here we’re trying to not get so caught up in Back-To-School that we forget it’s technically still summer.  We’re a warm-weather sort of family (well, the ladies are… Ken maybe not so much!).  We took the girls to Sly Park on Sunday to enjoy some sun and lake.  The adults had a wonderful time.   Sabrina had a good time but thought the water was a bit too cold.  Alexa had fun, but her review of the day after we got home?  That she did not like that beach because there were no friends her age to play with.  :-)

Around here I am working on chore charts for the girls.  Here’s a picture of both charts together.  Those little squares are icons of the actual chore.  I placed them there just to take the photo.  When they’re all done, the actual chart (the white part) will have a velcro strip (which I ran out of) and the chore icons for that day will attach to it.  When the girls are done with that chore, they can pull it off and put it in an envelope that will go next to the charts.

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Around here I’ve been trying to figure out new breakfast ideas.  My girls don’t love breakfast, and I especially hate it that Sabrina doesn’t, because I hate to send her to school without eating. I have tried making muffins, with mixed success.  I made these whole wheat blueberry muffins (which actually taste a lot better than they look in this photo), and Sabrina loved it when I made it, but then didn’t want it again the next day for breakfast. :-(

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Around here I am looking forward to getting back some scheduled time for myself.  Alexa’s preschool starts back up on Monday, and she’ll be going 3 days a week (for 3 hours each morning).  It may seem like a lot of time, but by the time I pick up and drop off, it’s only about 7 hours a week.  It’s wonderful, don’t get me wrong.  I can do a lot in that time.  But I also realize that between running errands, projects, volunteering, the To Do List, and some work that I’ve been doing, it’s not as much as it seems.  I am going to run out of time to do everything on my list.  I am re-evaluating how I spend my time and where I want (and need) to spend it.

Around here, I am working on consistently getting up early.  Shifting my time a little so that I go to bed an hour earlier and wake up an hour earlier.  When I do it, it just works.  I get to drink my coffee in peace before the girls get up, get some things done, and feel ready to start my day when the girls wake up.

 

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.

 

last week’s MIND Institute Conference & what I learned about Self-Determination and community integration

Last Friday I was lucky enough to be able to attend the UC Davis MIND Institute Summer Institute on Neurodevelopmental Disorders, a 1 day conference for professionals and family members.

Here is a summary of the highlights of my day:

*I got to speak to A Touch of Understanding about the possibility of them coming out to Sabrina’s school to put on a workshop about disability awareness.

*I attended a course about community integration that I found very interesting.  Team Davis presented information on how they started and how they run their program, which sponsors social and recreational activities for kids and adults with special needs.  This raised a lot of thought-provoking questions.  What can we do to create opportunities for community integration?  A wonderful comment that was made by one of the board members is that the schools are required to provide FAPE (A Free and Appropriate Education), but beyond that, how do we provide opportunities for a rich life?  What does the person love to do, what is the person good at, and how can we provide opportunities for those things in their life?   And how can we ourselves provide opportunities for Sabrina to feel useful, engaged, and happy during her day or week?   Lots of things to think about.

*I happened to meet and have lunch with a gentleman who has been an attorney working for both parents and the school districts, and who has worked towards creating inclusion programs in the Sacramento area.  Very interesting man and conversation.  You never know who you will get to meet.

*I finally got to attend a workshop outlining the new Self-Determination Program  “which will provide consumers and their families with more freedom, control, and responsibility in choosing services and supports to help them meet objectives in their Individual Program Plan”.  I believe that this program will be life-changing for a lot of people with disabilities and their families.   Here’s another definition from the website:  “As authorized in Welfare and Institutions Code, Section 4685.8, “the Self-Determination Program (SDP) is a voluntary delivery system consisting of a mix of services and supports, selected and directed by a participant through person-centered planning, in order to meet the objectives in his or her Individual Program Plan (IPP). Self-determination services and supports are designed to assist the participant to achieve personally defined outcomes in community settings that promote inclusion.”

Currently, we work with a Case Manager to determine appropriate services for Sabrina, and the Case Manager lets us know which vendor(s) we can work with.  They “hire” anyone who works with Sabrina and they oversee that relationship. Under the Self-Determination Program, we would get an allotted amount of money (the same amount we’ve had in the past- no more, no less), and we have more flexibility to use that money.  The money still needs to be spent on services that fall into the codes of services that the Regional Center pay for.  However, we would be able to shop around for a vendor that we feel is the most appropriate, we would manage the relationships with the vendors, etc.  We currently have a fantastic Case Manager who we adore.  However, that hasn’t always been the case, and we’ve had to wait close to a year in the past to start a service because we were forced to wait for a Case Manager who was uneducated and who had too large of a caseload.  This new program would allow us to do the work ourselves.  Currently Sabrina’s involvement with the Regional Center is limited, but that involvement will rise substantially once she becomes an adult. At that point, the Regional Center will provide assistance with her living situation, so being able to hire and fire our own caregivers, etc, will be a huge step towards having more independence to create a program that is truly appropriate and beneficial for Sabrina.  Yay, Self-Determination!

 

a gynormous village means saying goodbye

If it takes a village to raise a child, then raising a child with special needs takes a ….. gynormous village.

Sabrina’s school IEP team consists of her regular education teacher, special education teacher, instructional assistant, special education program specialist, speech therapist(s), occupational therapist, behavioral therapist, principal, adaptive physical education teacher, school psychologist.  Some of these team members work with Sabrina on a daily basis.

Then there is her private team, the ones who work with her outside of school.  Her speech/feeding therapist, music therapist, behavioral consultant, playgroup leader and case manager, her Alta Regional Center case manager, and her medical doctors.

As you can imagine, having a team of this size means that people will come and go.  This was a hard lesson to learn when Sabrina was younger and each person leaving felt so personal, like a relationship was being stripped away from Sabrina.  Now that Sabrina is 7, we’ve gone through enough exits and it’s gotten easier.  Easier, but not easy.  Sabrina’s a tough cookie to figure out, and the thought of “starting over” with someone who doesn’t know her is exhausting and can be frustrating.  I often have to remind myself that it’s OK, that we’ve gone through this before, that change can be good, and that saying goodbye to people means opening the door and saying hello to someone else with a fresh perspective.

At the end of the last school year, I found out that a lot of Sabrina’s school IEP team would be turning over.  I had a great conversation with her program specialist and felt very positive about going into the new year.

This week it’s been a little bit difficult to keep that positive perspective.  School starts in less than a week.  In the last few days I have found out that an important person on her school team will be moving on, and today I found out that 2 on her personal/private team are leaving.

Ugh.  I hate these goodbyes.

It’ll be OK, I know that it will.   All of this change will push me to be more communicative with her team,  and it will continue to challenge me as Sabrina’s advocate and as her mommy.

And it means that we get to say a lot of hello’s and welcome’s to new people in the next week or two.  And that’s pretty exciting.

 

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. :-)

Aloha! Getting ready to travel…

Getting ready to

Our family is getting ready to leave for a trip to Hawaii in a couple of days.  Last week I asked readers to give me feedback on their tips for traveling with a special needs child.

“Bring lots of activities and snacks.”

“Plan the shortest route possible or a flight with the least amount of plane changes.”

“..extra snacks and make sure electronics have full charge with back up battery options”

“pack all of her sensory equipment, and some toys that she can play with, her favorite stuff animal, and her movies”

“chewing gum”

“priority seating”

Someone mentioned involving your child in the planning, ie packing and picking out activities.

and my favorite, from my dear cousin: “medicate the mother with alcohol”.

:-)

Doesn’t sound much different from what you’d do to get ready for traveling with any kid, right?

Honestly, the pre-planning for this trip hasn’t been too much different  from what it would be if Sabrina didn’t have special needs.

There have been some differences, and here’s one of them.  I wrote up a simple social story for Sabrina:

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I printed out the pages on my home printer, laminated them, hole-punched them, and used 1-inch book rings to hold the pages together.

Yes, I have a laminator at home.   A while back I found myself tired of visiting Kinko’s in order to laminate her icons, and for an affordable price I can now get those projects (like this one!) done in the comfort of my own home.  It’s easy to use and I love it.  I keep it in my hall closet with my printer, extra paper, laminating sheets, and my new book maker.  Here’s the one that I use: Scotch Thermal Laminator 2 Roller System (TL901)

We will be introducing this social story tonight.  I also will be bringing another short social story that talks about the rest of the family joining us in Hawaii.  I’m still working on finishing that one.

I’ll also be packing up a couple of chewys for Sabrina.  She really needs oral motor sensory activities.  She chews on her fingers, her hair, anything.  She mouths stuff, she makes loud clicking noises with her mouth, she grinds her teeth.

I have found that this is her favorite chewy:

The Grabber Oral Motor Chew

However, she uses and tosses it, so I looked for something that can attach to her.  I found this: Chew Noodle

Check out the carabiner at the end.  I attach it to her shirt.  It’s a bit awkward since you have the “pinch” the shirt, but it works for us.  We also have this Chewable Turtle necklace, but she doesn’t seem to love it.  I think it’s because it’s small and she prefers the long chewys.

By the way, as I was browsing items similar to the Grabber Oral Motor Chew, I came across these 2.  I haven’t tried them, but they seem like good options:

ARK’s Textured Grabber XT Oral Motor Chew – Extra Tough

ARK’s Grape Scented Grabber XT Oral Motor Chew

We’re also packing Ear Muffs for when it gets too loud.  They’re cute and my 3 year old is jealous because they’re pink. :-)

Sabrina wanders, and she’s non-verbal.  Besides telling people her first name and her age, she can’t give much more identifying information.  A couple of years ago she got out of our hotel room at night (it was locked, but it was the kind of lock that opens when you turn the handle).  Fortunately she didn’t go very far before we woke up to a security guard asking her where her parents were.  Since then we’ve tried a few identification bracelets, but she gets them off.  On this trip we’re going to try simple disposable wristbands.  We’re using them for both girls: Disposable ID Bracelets by My Precious Kid.  If you have any suggestions for safety bracelets or wristbands, I’d love to hear them- leave a comment!

I’ve heard a lot of people mention giving Benadryl to their child so that they’ll sleep.  A couple of years ago when we were getting ready to take our last trip to Hawaii, I looked into this as an option.  I discovered that it could in some cases cause hyperactivity, and I just didn’t feel comfortable giving it to her if she didn’t need it from a medical perspective.  I’m not judging any of you who use it for the occassional trip- I just decided I didn’t want to.

HOWEVER, since Sabrina happens to get motion sickness, I felt completely comfortable knocking her out with some Dramamine.  :-)   I did just that on that flight 2 years ago and she fell asleep about 5 minutes into the flight and woke up about 30 minutes before we landed.  It mellowed her out enough during the boarding period so that she wasn’t freaked out.  Once we landed she suddenly became refreshed and happy.  Here are a few photos that I just found of her on that trip 2 years ago, right after landing.  It was windy when we got outside, and apparently she thought that was hysterical.

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I’m packing a TON of snacks, of course.  I decided to go with pre-made goodie bags that I can just easily whip out and hand to the girls.  I’m packing pretzels, cut up apple slices, cheese sticks, rice sticks, and anything else that I find that looks like it would entertain 2 little girls on a long flight.

All of this talk about packing reminds me that I have to go pack…

Aloha!

 

 

Introducing your child to the class

A year ago I was faced with the exciting yet terrifying knowledge that Sabrina would be going into her first inclusive classroom and meeting a class of typical kids. YIKES!

Well, it’s that time of year again.  I’ve seen a lot of question floating around about how to introduce your child to their class at the beginning of the year.

Here’s how I did it, for my non-verbal daughter who was entering the 1st grade.

After talking to a couple of parents who had gone before me, I knew that I wanted to talk briefly to Sabrina’s class, read a book or two, and answer any questions that the children had.  I wanted to keep it short and simple, not over-talk, but yet answer any questions they had in an honest way.

The first thing that I did was wait a bit.  I wanted the class to feel Sabrina out a little bit, and to see if any problem areas would develop that I should address. I waited about 6 weeks.  Some of you may wish to do it right away.  There are pros and cons either way, and it’s really a personal preference.

Before going in, I made a list of her interests, things that I thought that the others could relate to.  In Sabrina’s case, it was music, swimming,  being outside, eating (especially anything salty), and going to school to see her friends.  I picked out 2 simple books that I felt would make the points that I wanted to make about Sabrina.  I set it up with the teacher (who was extremely welcoming), and then I took a lot of deep breaths.  Who would of thought that it would be nerve-wracking to read to a bunch of 1st graders?  But I had never been in a classroom of typical children.  I didn’t know how they would react, what questions they would ask, how they would perceive Sabrina.  I was definitely outside of my comfort zone.

When I arrived, I immediately relaxed.  The children were so happy to see me and soon all eyes were on me.  First, I introduced myself as Sabrina’s mom and told them that they may have noticed that Sabrina does things a little differently than they do. I told them I wanted to talk to them about what Sabrina likes to do, and let them know that they may find that they like some of the same things.  I told them her interests, and after each one asked them to raise their hand if they liked it, too. They were very cute and enthusiastic about showing me that they liked the same things

Then I read 2 books:

My Brother is Very Special, by Amy May.  This book is written about a boy who has Apraxia, a speech disorder.   I didn’t read it word for word, but tailored it a bit to fit the situation.

Then I talked a bit about what it would feel like if they couldn’t communicate, and linked it back to how Sabrina sometimes gets frustrated because she can’t communicate.

Just Because, by Rebecca Elliott.  This is a favorite at our house.  This is an awesome story told by a little boy who’s sister Clemmie has a disability. She “can’t walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don’t know why she doesn’t do these things. Just because.” And he also loves her “Just because.”   The little girl in this book is more globally disabled than the one in the book above.  The phrase “Just Because” is repeated over and over again, so I engaged the children by signalling when I wanted them to repeat the phrase.

I asked if anyone had any questions.   They only had a couple of questions, and it involved questions about what she liked to do at home and about the interests I had just mentioned. “What does sabrina like to eat at home?”   Does Sabrina know how to swim or does she wear a floaty?”

And that was it.

I’ve listed a few more resources below.

Pedro’s Whale, by Paula Kluth Ph.D. & Patrick Schwarz Ph.D.

Why Does Izzy Cover Her Ears?  Dealing with Sensory Overload, by Jennifer Veenendall

Don’t Call me Special: A First Look at Disability,  by Pat Thomas

Do you have any other books to add to the list?  I’d love to include them in the Resources section!