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. 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.

A lot of people ask me if Sabrina has homework.

She does, although it is modified (mostly by the special education teacher).

The plan is that she gets homework packet on Friday for the following week.

She gets a spelling/sight word list and a Language Arts modified story. Typically the gen ed language arts book gets modified for her, but right now her teacher is piloting a couple different LA programs, so it’s a bit tricky. Her special ed teacher uses a special ed language arts curriculum with her when she’s in the Learning Center for 30 minutes a day.

Pre-teaching is very important for Sabrina. She isn’t interested in something when it’s first introduced, so by introducing some of these concepts at home before they’re introduced at school, it raises her interest level and ability to participate. I highly recommend it as a way to get the child as ready for learning as possible.

Now it’s your turn – share some of your own modified homework examples, either on the blog or on the Facebook page!

It’s been a while since I’ve written a blog post. It wasn’t intentional, but I really just found myself needing a break. This community has been overwhelmingly wonderful, and that fact is that there’s a lot of work to be done in the area of inclusion. And when you’re putting a lot into emotional work, it’s easy to get burnt out. Sometimes a break is just what’s needed to renew that passion.

Sabrina’s doing fine. For the most part, we have a wonderful, well-rounded IEP team this year. Her IEP is next week and I have thought less about this year’s than I ever have (and it’s a triennial!). I’ll take that as a good sign.

She has been sick a lot. Nothing serious, but just cycles of colds turning into ear infections turning into issues that go along with too many antibiotics. Again, nothing serious, but just frustrating because even little colds set her back a lot.

I have some exciting things that I am working on in the area of inclusion, and I’m excited to share it with you. Look for more in an upcoming blog post!

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!