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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.