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

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

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

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

Change can be difficult.

Today we say goodbye to Sabrina’s current teacher, Mrs. Preto. To say we’ve been blessed this year with an amazing teacher would be an understatement. Along with Sabrina’s Instructional Assistant, Sabrina has had a loving and positive classroom team that believes in her, as well as a warm, rich classroom environment where she has thrived.

Until this week, I hadn’t allowed myself to really feel the sadness about saying goodbye and instead I threw myself into the actual planning for the transition.

Effective routines and practices have been put into place for Sabrina this year. Routines are so important for her feeling of safety, and she can’t learn without that. Although I know that in her new class there will be a whole new set of routines and activities, I want to do all that I can to make sure that the core of what we’ve learned this year can be carried over.

I’ve created a Portfolio for Sabrina that includes an “About Me” document, Goals @ A Glance, a document with some sign language that that effective for her need for visuals, and examples of modifications and peer supports that have been used. I have started researching which books she may read next year and trying to find modifications for those so that she can participate. I’ve started thinking about social opportunities for Sabrina over the summer, so that we can nurture those friendships over the break.

Today was her last day of 2nd grade. It’s hit me now.

Sometimes you hear an adult talk about a teacher or an adult that changed their life. I know that Mrs. Preto is that for Sabrina.

I have fought hard for others to believe in Sabrina and to break those barriers of limits, and this year Mrs. Preto has helped ME believe even deeper in Sabrina and in what she can accomplish in life. It’s very easy to underestimate Sabrina, I know. To hear Mrs. Preto tell me after getting to know Sabrina that she has no limits for her has been powerful and has strengthened my own resolve that Sabrina will do great things. She models respect and patience, and has been a huge force in helping Sabrina develop wonderful relationships at school.

And really, I know that it isn’t goodbye and that a door isn’t closing. Mrs. Preto will continue to stay in our lives. She will be among the first to hear about Sabrina’s accomplishments. She is a lifelong friend.

Yes, transitions are hard. But I must believe that what this year was meant to teach both me and Sabrina has been fulfilled for now and that we must move on and grow.

“The doors will be opened to those who are bold enough to knock.” –Tony Gaskins

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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!

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.

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, printed 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.

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 a favorite chewy, though she uses and tosses it, so I looked for something that can attach to her — a chew noodle with a carabiner at the end that I attach to her shirt. We also have a 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.

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, for both girls.

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. It was windy when we got outside, and apparently she thought that was hysterical.

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!

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 — 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 — a favorite at our house. This is an awesome story told by a little boy whose 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.

A few more resources: 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.