If you follow my blog, then you have already read what I feel is important for parents to know in planning for a full life for their son or daughter. Tara and I interviewed people about how they feel things can change in regards to improving education and support services for children and adults with disabilities. We wanted to get expert opinions and information from professionals and advocates about how we can all support people with struggles in our communities.
One of the first people we interviewed is Margaret Tanenberg from the Center for Independent Futures.
Here is what happened:
Alyssa- What do you hope for your child to gain in terms of knowledge or reactions to life's challenges?
Margaret- I hope they will have confidence, knowledge about how to face things head on or access to the information or support they need to problem solve.
Alyssa- What were your biggest struggles raising a child with special needs? What, if anything changed? For better or worse?
Margaret- I struggled getting the school system to see his gifts. There were pockets of people who did, but most didn't. Children in special education have labels and are stigmatized by them. The nature of special education is to dwell on differences instead of recognizing that each child presents with different gifts and strengths.
Alyssa- What are parents struggling with today? What concerns do they have? What challenges do they face?
Margaret- The biggest concern of advocates and families today is not knowing who will be there for their child when they are gone and ensuring their child's hopes and dreams are honored and realized. Families struggle to find supportive individuals and organizations that can carry out those hopes and dreams in a person centered way. Beyond this, knowing what options for support services and funding are available is a challenge. Having the financial wherewithal to support the individual for the rest of their life.
Alyssa- What information do you wish all parents of special needs children had? Have any words of encouragement?
Margaret- Be mindful of transition planning and support at the high school level. 2/3 of schools are out of compliance with federal mandates regarding transitional support. It’s important for parents to be as knowledgeable as they can be in order to advocate for their son or daughter and make sure their ISP taps into their hopes and dreams.
Every parent has a vision of what they want for their child and this vision may not always be aligned with that of their son or daughter. Let your child self discover, make mistakes and learn.
Explore alternatives and be flexible. Allow children to be their own person.
Alyssa- How do you encourage your child to build skills without codling, enabling or pushing too hard?
Margaret- I think its important to give opportunities for learning and growth. Make things a positive experience. It's ok if things aren't perfect or messy. It's ok to make mistakes. You move on and learn life lessons.
Alyssa- Thank you for taking the time to talk with me, Margaret.
Margaret- You are most welcome. Thank you for inviting me.