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Open Letter from One Parent to Parents New to Special Education:
Open Letter from One Parent to Parents New to Special Education:

My name is Kristen Denison and our son has autism.  He is in the ASD program in the Special Education Department of the Minneapolis Public Schools.  As I write this in April 2016, he is in the 4th grade and in a Level 3 setting at his school.

It’s taken me a while to understand what that means.  I’ve learned a lot the hard way, by plodding through materials, sitting through workshops, making a number of mistakes, and leaning on therapists, teachers, and school support staff for guidance. 

Recently Rochelle Cox asked if I would write down “things I wish I had known”  earlier to help other parents.  I’m happy to do that, although I would remind people that my experience tends to be focused through the lens of autism.

I wish someone had told me to embrace fully my part as an IEP  team member.

It was confusing at first, attending “IEP” meetings.  They were called and run by the school, with the school explaining what it “would” do.  I was on the receiving end, a non-expert in education.   If I had a request or a question, I would feel awkward, wondering, “Can I ask for this?  Can I request this information?”

It took a while to realize that I am not “just” attending IEP meetings:   I am a MEMBER of  a team of equals.   I can ask for anything, request any information, and bring up anything I think is relevant to my child’s education. 

As a team member,  my role is to (a) state what I want for my child, (b) why I want it, (c) listen respectfully to any response, and (d) work with the other team  members to reach agreement on the issue important to the whole team:  my child’s education.

That’s not a receptive role; that’s an advocating role. The work is not  easy.  Teams do have disagreements,  but as an equal  member of the team, I do not have to give up on a point just because another member said “no.”  As an equal to the school, I can reach out and upward if I feel more input is needed before a decision is made.

I Can Ask Questions!  I’m not Supposed to Know Everything Yet about IEPs!

The Special Ed world is full of lingo, nowhere more so than with the IEP and subjects surrounding it.  FBA?  RTI?  Acronyms thrown around as if everyone at the table should know them already.  I didn’t.  I wish someone had reminded me that it was ok to ask what terms meant.  The special education staff is focused on the work they are doing for your child, but they may not realize you need an education, too.

There are many sources of information and definitions, from the PACER Center to reputable websites.  But there is nothing wrong with starting with your child’s IEP team and asking questions in the moment.  It is not a sign of weakness or being ill-informed; it shows that you want to participate fully.  Later you can research the information to learn  more in depth, but don’t be afraid to ask in the moment.

As a corollary, I wish someone had mentioned to me not to be afraid to ask for time.  Time to answer questions, time to respond, time to repeat what was said in the meeting, time to clarify what was unclear, even time to adjourn the meeting so I can consider issues, then regroup later.  I have found myself caught up in the urgency of wanting everything for my child right away,  or wanting to give an answer to the team immediately.  But taking time to think and consider is just as important to getting the answer right.

Let’s not confuse WHAT my child can learn with WHEN my child can learn it.

As special education parents, it is easy to allow the relentless march of each passing school year to make us feel anxious about our child’s progress compared to his peers, especially if our child seems to be behind socially or academically. I remember how rushed and panicked we felt in kindergarten when things were not going well.

I’ve come to view the Individual Education Plan as a “get out of jail free” card, where the “jail” is the blind assumption that a child’s age can determine what “should” be learned in a particular school calendar year.

Sure, the IEP uses the school grade standard as a starting point.  But those grade expectations were created  for the typical child, who already has or can easily acquire the skills to learn in a group setting of 20+ other kids.  That’s not my son; he lacks those skills even while his mind has the potential to learn the same math, science and writing that are the subjects of school.

The IEP exists to address that.  It is a plan specifically tailored to my child, and his abilities. The “individual” part of the plan means that, as a team, we identify what he struggles with, and figure out the alternative learning process to reach what he “should”  learn in school, even if it means he is not lock-step with his peers of a particular grade setting.

The important point is what to learn, and how to learn it, not when it is learned.  I’m not in a rush to get my child “off” his IEP; I’m only concerned with making sure my child gets a chance to learn what he needs to know.

I need to help my child understand himself if he is going to be included with others in our public society and advocate for himself.

It was so hard getting a diagnosis, and being so different from friends and family.  Grief, loss, all of these feelings come up when we realize the path for our child is not going to be the one that we walked ourselves.  In protecting our children, and ourselves, from difficulty or stigma, I realized that it is easy to lose track of a parent’s goal:  To teach our kids to live in and be a part of the public world around them to the extent they are able.

It also fosters an attitude that makes it hard for us to talk to our kids about themselves, about what it means to have a disability, particularly a disability that is invisible like autism.  We want to avoid “labeling” our kids, but end up making it seem like the disability itself should be kept private.

I’ve realized that is a disservice to my son.  To feel safe and secure, to understand his place in the world, he needs to understand who he is and why he does things that are so different from other kids.  He needs to understand his differences so he can be part of figuring out what his place is with others.

And it is a disservice to those around him as well.  To the extent that he must learn how to live in the public, the public also needs to learn that, at times, it must accommodate even the invisible disabilities.  By helping my son understand himself, I can give him the tools to advocate for himself in the public world, and ask for the accommodations he may need to be a part of society. 

This process starts in school, where kids are included as they are able in the more mainstream classes, and the typical children are taught that what they see is part of the range of abilities that span all people, not just “typical” people.  But it also starts with me, being able to tell my son, “You have autism and here is what it is like for you compared to other people.”  At some point my son needs to be part of his own IEP planning; but I have to lay the foundation to help him understand that.

I must be the change I want for my child.

One of the hardest things I had to realize was that I couldn’t rely on my own growing up to guide me as a parent.  I could not focus on “how kids generally are.”  I had to figure out this one particular kid, and figure out how to help him make sense of the world.  And I had to encourage others, including school, to be willing to figure him out too.  But it had to start with me.

To help him learn, I had to learn too.  If his teachers were using “Zones of Regulation,” I got a copy and read it.  If I wanted him to be a “social detective” and learn the rules of the social world (thanks to  Michelle Garcia Winner), I had to be willing to be a detective, too, and figure out my son’s view of the world.  I had to become fluent in two languages – the general world and my child’s world, and be able to translate between the two.  I needed to learn, as schools are learning, that “behavior is communication” and that I had to interpret  the behavior, not just react to it, to understand out what my son was trying, but unable, to say.

By being fluent in those two languages, I am a better member of the IEP team.  When he was having trouble with a new peer, I pieced together bits of things he said at home and realized that my son thought he tried to be a friend but felt rejected.  Being able to bring that information to his teacher helped the school understand that it needed to work with him on the peer relationship, not just assume that he didn’t like the other peer or was acting badly for no reason.  The success he has now with that peer makes me grateful that the school, and I , were able to change our own approach to help him change his.

All of this was hard.  It’s been years so far, and my son is only in 4th grade.  I don’t claim to be a master, and I know we are not done.  I do feel that I’ve actually learned something, though I wish I had known these things a while ago.  I hope having these thoughts helps you as you navigate this world.

Where to Go for More Information:

There are a number of places to seek information, and lots of groups devoted to different disabilities.  But the number one place to start, when seeking information about what an IEP is, what the rules are, and how parents can work with the school, is PACER Center.  PACER stands for “Parents Advocacy Coalition for Educational Rights.”  It is a non-profit specifically intended to offer free information to parents of children with all disabilities, not just autism.  Here are some sample workshops:

“The ABC’s of the IEP – A Guide for Minnesota Parents to the IEP”

“Special Education: What Do I Need to Know?”

“Tips and Tools for Talking with School Staff”

You can find more information for them at www.pacer.org.  And, as a Minnesota resident, a number of their publications are free to you. 

It is also a good idea to get familiar with the Special Education Department website itself.  There you can find resources for support for various disabilities and even the contact information for all special education staff.

There is also a parent-lead group called the “Special Education Advisory Council,” or “SEAC” (pronounced “seek”)  which is a group of parents/guardians and key Special Ed staff.  Minnesota requires the school district to have a counsel made up of parents/guardians to advise the Executive Director of Special Education on policy and planning.  Information about the SEAC, including the meeting times, agenda, and contact information, is also on the MPS Special Education website.

It’s also good to seek out other parents.  Ask your special ed teacher to help you find out if other parents want to meet.  If they do, exchange your information and get together!  Each new year brings new people looking for friends and support.  I am grateful someone else took the first step to reach out because it has helped me tremendously.

 

Finally, there are a myriad of books/websites/information workshops from a variety of sources, especially sources focusing on particular disabilities.  I don’t claim to have any kind of expertise in that.  But I do have some “core” books that, when someone asks me for a reference, I mention them, admittedly with a lean toward autism:

  1. “A Guide for Minnesota Parents to the Individualized Education Program (IEP),” PACER Center, 8161 Normandale Boulevard, Minneapolis, MN 55437, www.pacer.com (available for download from their website; hardcopy is free to MN parents of children with disabilities and can be ordered from their website).  If I had my way, the school districts would provide a copy to each family to read before attending their very first IEP meeting.)
  2. “Autism . . . What Does It Mean To Me?:  A Workbook about Self-Awareness and Life Lessons for Kids with Autism or Asperger’s,” Catherine Faherty (A fantastic way to help foster the conversation between parent and child and school. though it reaches beyond school. Good practical advice a parent can read and consider even before the child is ready to use the workbook him or her self.)
  3. “The Behavior Code:  A Practical Guide to Understanding and Teaching the Most Challenging Students,” Jessica Minahan and Nancy Rappaport, MD.  (If some mentions a “functional behavior analysis” or “FBA” to you, which is likely to happen if your child has challenging behaviors, this is the book to read to understand it.)
  4. “Bright Kids Who  Can’t Keep Up:  Helping Your Child Overcome Slow Processing Speed and Succeed in a Fast-Paced World,” Ellen Braaten, Ph.D. and Brian Willoughby, Ph.D. (Although it focuses on how to address and help slow processing speed, I also think it has a more general appeal by discussing the practicalities of helping any child with any disability that affects how they are learning in the school environment, and what things can get in the way.)
  5. “Lost At School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them,”  Ross W. Greene, Ph.D.  (Although focusing on older children, I think it has a tremendously helpful attitude for how to deal with challenging behaviors.)
  6. “The New Social Story Book,” Carol Gray.  (The idea of the social story as a teaching tool is used a lot in autism, and this is the originator of the concept.  Social stories might be useful for any child struggling with handling confusion in school, too.)
  7. “Thinking of You, Thinking of Me,” Michelle Garcia Winner.  (Although Winner started her work on social skills with autistic children, she has worked to create a methodology for teaching social skills to anyone who needs to understand how to, as she puts it, “’share[] space with others effectively’ or ‘adapt[] to others effectively across contexts.’” (p. ix)  What better description for how to learn to go to school when one’s disability makes that hard?  This was one of the first books I read that finally “made sense” of my son to me.)