School Based Teams, IEPs, and a Parent’s Journey with Autism

I have been reflecting over the past week about how important it is to me to share the experiences that I have had parenting a child on the Autism spectrum.  So many of them have been positive, and although they have challenged me, I am more because of these experiences.

However, there have been some difficult times, when stress has been high and I have felt fragile – even brittle. There was a period when we were in the midst of the diagnostic process when I could no longer read a book for enjoyment. I just couldn’t focus or keep my thoughts on the text, and too, anything I read seemed so meaningless and trivial. Advocating for a child with challenges, especially invisible ones, can be a tireless and unending job, but I am more because of these difficult times as well.

Yesterday I was reflecting about when we first had to participate in School Based Team meetings. As a teacher it was a mind-bending experience to suddenly find myself on the other side of the IEP table. It was not where I expected to find myself. I had taught special education students, but I had never envisioned having a child with such challenges.

Even though I knew the process from a teacher’s point of view: the first time I went into a meeting as a parent I was so anxious. I found these meetings stressful and exhausting.  Part of my stress was generated because I was trying so hard not to cry. I felt uncomfortable and embarrassed about my tears and didn’t want the school to think I was emotionally delicate or on the brink of crumbling. Honestly though, I cry during movies and sometimes even commercials, so it makes sense that something much closer to my heart would evoke an emotional response.

In retrospect – I think the tears were a part of coming to understand and accept the journey. There may have been a grieving for what I had imagined would be. I don’t feel this anymore – if I could pluck the autism out of my child – I wouldn’t. Of course I understand that this may not be the case for every family, but the differences in the neurology of my child are part what makes him who he is – and he is remarkable.

I still sometimes feel a kind of forward aiming grief for what I imagine will be the future and continued struggles for my amazing boy. I fear for his vulnerability, and I hope for his future independence. I worry, and then I try to put this into action. I work to support educators and others in understanding experience of children on the Autism spectrum, and I look for opportunities to build the social cognition of H and other children with whom I work. I present workshops to other educators and even to university students (future teachers) …and now I find myself writing this post.

I have accepted my tears and in meetings I am mostly over this now, not the crying – just the being embarrassed about it part. I bring a kleenex and if I get passionate about my child and tear up – so what!?! The meetings are an important part of creating and sustaining a critical support team for my child, and we are grateful for this.

Even with my knowledge of the system and the functioning of the School Based Team, I found the process challenging on an emotional level. I can’t help wondering then, whether parents with less familiarity might at times really find the process overwhelming.  I hope to walk the next steps of my journey aware that experience can be a lesson in understanding others.

I also keep an extra box of kleenex…


30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2011)

About Leah Kelley, Ed.D.

Leah Kelley, M.Ed, Ed.D., Writer, Consultant, Activist, Speaker, and Educator, working with Teacher Candidates at UBC. Authors blog: 30 Days of Autism. Projects support social understanding, Neurodiversity paradigm, Disability Justice, and connecting Disability Studies in Education(DSE)to Educational Practice. Twitter: @leah_kelley Facebook: 30 Days of Autism: Leah Kelley
This entry was posted in Autism, Diagnosis, Grief, IEP, Parent, School Based Team Meetings, Special Education, Teacher, Tears and tagged , , , , , . Bookmark the permalink.

4 Responses to School Based Teams, IEPs, and a Parent’s Journey with Autism

  1. Margo says:

    Don’t you just want to shake people and make them see all the wonderful things about your child! To recognize his gifts, not his “disability” as they may call it. I, too, was a teacher on the other side of the SBT table as a parent. It will certainly make me a better teacher. Empathy! Support! We all need it and we all need to do our best to recognize each child’s differences as gifts rather than curses.


  2. suvarna says:

    For a while now I’ve been trying to remember to send you a link to this book
    It’s a celebration of the differences and uniquness that makes up each one of us.
    beautiful post my friend.


  3. Pingback: School Based Teams, IEPs, and a Parent’s Journey with Autism (via Thirty Days of Autism) | Thirty Days of Autism

  4. Erin says:

    I totally understand. I am a teacher myself, a Science teacher, and have taken part in many IEP meetings. It is a weird sensation to be on the other side of the table as a parent. What makes is even more difficult is my son is also my student. I work with the team that I have to debate with over what my son needs. Tensions tend to run high because I know how the school operates and I know the tactics that the SPED Dept. tries to use to not provide services. It is a very stressful situation.


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