2012 Graduate Updates
Steve graduated from NH Leadership in 2012. He was recently interviewed and shares some of his story with [Leadership Grad update photo Steve Alexander] NHLS grads, including telling us about his move to Massachusetts.
What made you move to Marblehead, MA?
NH was hard to leave.
After my first wife passed away in Maine, I moved to NH to find solid ground, to reorient, renew and rebuild a life for my son and I. NH offered light after harsh loss.
NH is great, I love the people, life style and geography. While in NH I remarried, and also, unexpectedly, entered the disability community as my son’s needs began to surface. This of course was a new journey and gift, and luckily, wonderfully, the special needs community in NH is phenomenal -- with many opportunities to learn, network, and participate.
A double edged sword, my wife landed her dream job in Boston area. The job was great but the commute wasn’t. Four hours a day commuting in the car wasn’t ideal or sustainable, so a search began on where to move in MA. The search was not easy, but eventually we settled on Marblehead, a stable community with positive schools and relaxed lifestyle.
How are you advocating for your son?
In school and out, I focus on being pleasant and assertive, while trying my darnedest to keep humor up and [NH Grad photo of Steve Alexander2] stress down (mine and others). Long term success is the ultimate goal, so while I focus on today’s needs I’m aware of the long view as well. As he gets older, we involve our son more and more in his own advocacy, skill training, and outreach to others. It can be hard, but we step back a lot and let him try new things, pushing his current limits.
What advice would you have for other grads about getting involved?
Find your niche, what you are good at and enjoy, and get as involved in that area as possible.
You are still connected to the IOD as a Council Member for IOD Consumer Advisory Council even though you moved to MA– what makes you want to do that?
The IOD sets the bar as to what a disability organization should, and can be. In various ways, I am involved with disability organizations throughout North America. I have never encountered another organization with the perfect mix of talent, focus, minimal red tape, and selfless service as the IOD. They don’t see barriers, they don’t see walls, and they don’t see the word “No”. In my experience, their thinking is along the lines of, “what needs to be done, how can we do this, let’s get started.”
I am indebted to the IOD for their Leadership program, their workshops, films, outreach…so many things. While I live across an invisible state border now, I remain a part of this community and region. I am thrilled to have been asked to participate in the CAC.
Steve added that his “Day job” doing advocacy and support for Tourette Syndrome families. Besides the CAC, he has recently joined several other boards:
- Board Member and Education Specialist for the Mass Chapter of the Tourette Syndrome Association
- Field Services Committee Member for the National Tourette Syndrome Association
You can reach Steve firstname.lastname@example.org
As the Tourette Syndrome Association of Massachusetts education specialist, I'm organizing two workshops (free workshops!). The first, an Educators Workshop on Tourette Syndrome and coexisting conditions, is for school personnel and private practice professionals and will be held Dec 6th at Salem State University. The second, a Family Workshop on Tourette Syndrome will be January 11th at Massachusetts General Hospital in Boston. While the MA chapter is host organization, my NH blood runs deep, and I am happy to announce that as of today 45% of registered attendees are from NH. Thanks for getting the word out! Full details can be found at www.tsa-ma.org.
“At our first Leadership Session, I shared that our family had engaged an attorney to help us with our son’s education. But, what you all may NOT know is that Beth Dixon’s presentation about her son Andrew’s experience had such a huge, positive, and transformative impact on us,” said Ellen. “I had never heard of 'dual enrollment' before. Or that part of a transition plan for a college-bound student could indeed include attending a college class while still in high school.”
An Aha Moment for the ages!
Ellen continued, “After discussing this with the attorney, we were able to come up with a strategy that fit his IEP and supports my son at New Hampshire Technical Institute (NHTI) all at the District’s expense. It would never have occurred to me had it not been for Beth’s story.”
Ellen reports her son is being given the opportunity to gain experience in a way that is totally supported and will prepare him for further post-secondary education.
Ellen is taking her experiences and expertise into her community as well. “I’ve been asked to speak, along with another spectrum mom, about person-centered planning at the Moore Center (Region VII). This mom and I took a five-day intensive course in June at the Institute on Disability (IOD) with Patty Cotton. We’ve also been through the IOD’s 'Specific Planning Encourages Creative Solutions' (SPECS) program. Our two-hour presentation will be from a mother’s perspective.”
Lastly, as Co-Chair of the Independent Living & Employment workgroup of the NH Council on ASD, Ellen is helping to focus energies on the group’s next project, arranging for speakers and experts to share best practices on autism and the workplace. “As Autism Awareness Month approaches, some of us are planning fun events for fundraising and an acceptance--not simply awareness--campaign.”
“Oh, and I got a tattoo! It’s the same as the one that NH moms designed that was featured on 'NY Ink' recently. The tattoo is a pale blue puzzle piece (since I have a son) and a gold Celtic knot of sisterhood. It is a tribute to the other spectrum moms who share the extraordinary experience, and a reminder that I am not alone on this path.”
Written by Tamara Le
“I remain involved as the chairperson for The Moore Center Family Support Council as well as the Special Education Parents Advisory Council (SpedPac) of Bedford,” reported Pam MacDonald to NHLS recently.
Pam notes the biggest change for her family of late is that they recently implemented a full inclusion IEP for their daughter, Olivia.
“It took many hours of meeting with our IEP team,” said Pam, “and we just crossed the finish line. We began implementing just in the last four weeks and I am happy to say that my daughter has already had two play dates!”
Indeed music to a mother’s ears.
“We’ve received at least three notes from classmates asking for play dates along with notes saying how they love being Olivia's friend. It is the best feeling as parents. And, Olivia loves it!"
Written by Tamara Le
- Current NH-LEND Family Trainee
- Recently appointed to the Governor’s Commission on Special Education and Charter Schools (the official name is “Commission to Study Issues Relating to Students Receiving Special Education Services While Attending a Chartered Public Schools” - how is that for a mouthful?!)