When Alex was born 19 years ago we lived in a well-funded school district. Services and supports were available from her birth until she started kindergarten. These services were provided by a cooperative of special education districts and were my first teachers. At age four Alex was dually placed in a special education program and a local pre-school for two years.
Alex started kindergarten at six and until she was in six grade, when we moved to Colorado, she was included and supported in the classroom as well as extracurricular activities. When we relocated to a rural school district we experienced what most school districts are challenged with now – lack of funding for special education.
Before I go on, I do not intend to insult any teachers, case managers or school administrators. We have known many wonderful educators in our journey through the education system, and many not so wonderful. In my very humble opinion funding cuts, capacity issues, reporting requirements and tenure are all barriers to delivering the quality of education and the services to ensure this education is delivered, reinforced, retained and sustained in a way so students of all abilities can be successful and contributing adults in their communities.
So what does this model look like? To me and to Alex this is the idea of inclusive education and the least restricted environment (as specified by IDEA)
Very simply IDEA 2004 states: The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
The development, delivery and implementation of an IEP, or individualized education program were a big part of this massive act and a big step forward. However, in my experience Alex’s IEP was ALWAYS in non-compliance. There was always something that was not legally correct, whether it be the services we not delivered as promised, the team did not meet regularly as specified, or goals were changed without my knowledge because it was decided Alex would never master a particular learning.
The last six years of Alex’s academic career were difficult for everyone, including our school administrators who learned that when a parent advocates for their child, things can and do change.
Once again, this is not about casting blame rather learning how to work with what we have. Some families will move out of their district for a better school, some will battle the school, and others will get so fed up they lose the energy to fight. We were all of these families at some point in Alex’s school years. Note – Alex graduated from high school at 18 and completed all the requirements for an academic certificate and chose not to stay in school until 21 (made possible by federal law).
There will never ever be enough funding to educate our children with special needs. This does not mean we have to agree with our child’s placements or lack of services, advocating is still important. What it does mean, we need to work within our communities to fill those gaps. What are the skills and tools our children will need to be successful adults? Should we start with the vision and provide a plan to realize our child’s vision not the school’s?
Does participating in the school or local play help with speech, social skills and reading (can the school provide the support to practice lines)?
What kind of sports help with fine and gross motor skills, in the school and in the community (can the school provide training to the coach)?
A lot of kids love music, is choir a good options for social skills and speech?
We asked these tactics be incorporated in Alex’s IEP and it was difficult, but once accepted we worked with the most awesome drama coach ever, a wonderful man who had never had the opportunity to work with a student with special needs. I know it changed his life, he has told me many times and Alex has a lifelong friend who will support her in the community and always look out for her. We had some great sports experience and some not so great (all documented in this blog), and music and the school musical were a high point of Alex’s high school career.
I know I am preaching to the choir, but I also know, like all parents, that when something does not feel “right” it most likely is not right and learning and getting involved is the only way to fix it.
As part of the IDEA funding as well as other federal mandates each state should have a number of resources for families, the following are the links to the Colorado resources:
These organizations are not the solution but do provide information, resources and support. Knowing we were not alone was a great comfort to me, and as we enter adulthood have been an invaluable source of ideas and creative solutions for a future of promise and contribution.
And that is just the beginning. It is such a shame that in 2012 our families are having the same challenges we had in 1999. Change takes time, but change does happen quickly....what we need to do now is dream big, believe and advocate, just like we do for all our kids.
Margaret (Gary) Bender
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