When James moved from Early Intervention ( EI) services to the public school system, it felt like we had moved from a cruise ship to a dinghy. We had so appreciated the services coming to our home and the family centered approach of EI. Our opinions, schedules and plans for James mattered.
When he entered the school system, our experience was very different. The IEP team immediately directed us to a segregated classroom for James. We knew that he belonged with his typical peers. We needed the teachers to support us in our vision for James. What we always tried to do with James was to surround him with people who thought he had limitless potential. If they looked at only his diagnosis, they would deny him of opportunities we thought he should have. We had to work to create a team of "believers".
We continue to search out believers and people who can journey with us and imagine the possibilities. James continues to surprise us and remind us that his potential is limitless.
-Susan, James's mother
When your child reaches age 3, the family's first experience with transition will occur. You will be introduced to the educational system, and your child will need to be determined eligible to receive services through an individualized education program, or IEP. Schools will be making assessments and recommendations with important implications for your child. The parent's role is critical in working to coordinate with educators and service providers to set measurable goals and objectives for their child. Thus begins your journey of educational advocacy and understanding your roles and rights in the process, as well as the various programs, services, and supports schools may offer your child.
Just as every child is unique, the way each parent approaches their planning is unique. Below are a few basic planning points that are unique in planning for your child from age 3 to age 15. (These steps are in addition to the comprehensive Planning Points outlined in our book, The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child's Life, Brookes Publishing 2007.)
~ Learn as much as possible about your child's diagnosis.
~ Build and maintain relationships with physicians, schools, therapists, teachers, provider agencies, and your neighborhood community.
~ Register with your local police and fire departments, and let them know you have a child with special needs living in your home. Obtain and complete a child's identification kit, and include a current picture.
~ Get to know your state's laws on public education; make sure you have a clear understanding of your child's entitlements and your rights and responsibilities as the parent.
~ Check your local school and provider agencies for parent support groups, educational workshops, and/or parent advisory councils.
~ Make sure that your budget includes family vacations, evenings out, time away, and activities that you enjoy.
~ Review you current financial and estate plan at least every 3 to 5 years, as well as any time your situation changes.
Some resources that may be helpful at this stage:
fcsn.org Federation for Children with Special Needs
mfofc.org Massachusetts Families Organizing for Change: Leadership series
spanmass.org SPaN Special Needs Advocacy Network