Autism Parents And Schools – On The Same Team

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This may well have been titled – “Partnering With Schools.”

Now that school’s back in session, many Autism Parents (the term I’ll use) are again turning their thoughts towards those semi-annual nightmares – IEPs.

IEP stands for Individualized Education Plan.  This is the special doctrine or mandate that outlines in writing the expectations that parents, children, and school staff have regarding your child’s education for that year.  If your child needs particular help or an adaptation of “normal” school life, this is where that gets written down.  I’ve been to a number of these (Jake’s in 6th grade), and have learned a few tricks to survive the meetings where these documents are created.  These tips are meant for IEPs, but are also a very integral part of dealing with (and partnering with) schools each and every day.

These are our family’s suggestions, culled from years of experience, discussions with other parents, and courses we’ve attended. 

1.  Bring a picture of your child with you.  This is especially important early on, when the school system is basically unaware of who you or your child is.  This is a nice reminder that your child is an actual “person,” and not just another SpEd case to be dealt with.   If at all possible, bring your child with you.  This can help everyone, especially administrators who may not personally “know” your child, get a better feel for his/her situation.

2.  Be a positive member of the team.  Remember that everyone who sits around that table has (or should have) the best interest of your child in mind; and at heart.  I’ve heard some pretty adversarial stories from frustrated parents, but I think an open declaration of positive intention can go a long way.  We boldly charged into our very first IEP and declared, “We are ready to be positive members of this team; but, screw with us, and we’ll just as happily play the role of worst nightmare.”  We went in with the thought that it was going to be Us vs. Them.  Needless to say, it was a while before we finally brushed that chip off of our collective shoulder and realized that nobody was out to get us.

3.  Do your best to be familiar with the Special Education Regulations in your state, or bring someone along who is.  Know your child’s rights and that know that it’s not fair for you to demand something the school has no obligation to provide.  FAPE stands for Free and Appropriate Public Education.  It does not mean the world revolves around my child.  Individuals with Disabilities Education Act (IDEA) is federal law that provides that children, ages 0-20 can be evaluated, and if found to be in need, provided for in Special Education.  FERPA stands for Federal Education Rights and Privacy Act.  This is the school’s version of HIPAA, which provides for confidentiality of records in school systems.  In Maine, Chapter 101 of the Department Of Education’s State Law is the one dealing with Special Education.  More details for IDEA, FERPA, and Maine’s Chapter 101 can be found here.

4.  Bring someone with you who you A. trust, and B. believe can be impartial.  A case manager from an outside agency can often be this person.  It can be very intimidating sitting as one or two parents on the side of a table that includes classroom teachers, SpEd teachers, the principal, coordinators, ed. techs (aides), and/or therapists (usually Speech and Occupational Therapists in the case of autism).  Meet with your case manager ahead of time to discuss your goals for the meeting.  You may have a good idea of the points you’d like to make, but get scared, angry, or worked up in such a way that your mind goes blank and your emotions get in the way of what’s best for your child.  If you lose your cool, your level-headed friend may be able to step in and save the day.

5.  Remember that regardless of who’s sitting around that table, YOU are the number one expert when dealing with YOUR CHILD.  Nobody knows your child better than you do.  Mrs. X may be an expert at Speech Therapy, but I’m still the resident expert on Jacob Whitehouse.  It’s easy to be intimidated (see #4), but your seat at the table is just (if not more) important as anyone else there.

6.  Bring your doctor, if he/she will attend.  We invited our primary care doctor when we had made the decision to try a medicated patch with Jacob.  It was a huge step for us, and we wanted to make sure we had good, sound medical advice in our corner.  It also helped to have our doctor hear what the teachers and special workers were saying about Jacob and his behaviors, attitudes, etc.  He was hearing things with the ears of a trained medical diagnostician, and was able to offer unique insight.

7.  Praise the effort that is being made.  I hate to simplify it to the level of positive reinforcement, but you truly do get better results with honey.  Staff and teachers who feel appreciated and recognized for their efforts and time will be more likely to go that extra step.  Say “thank you” a lot.  This may be your child’s teacher’s job, but it’s nice to be noticed for doing a hard job well.

8.  Try not to speak disparagingly about your school at home in front of your other children, or your child with special needs, for that matter.  The Us vs. Them mentality begins at home.  Our kids watch and listen to more than we realize.  Instead, let them see you speak highly of the positive aspects of your school and school staff.

9.  If you hear a rumor, or become aware of a situation involving your child, try to remain calm and get the whole story.  Jumping to conclusions is often detrimental to the relationship one has with their school.  It’s especially hard to remain calm and focused when your child, your baby, is potentially being bullied, ostracized, or otherwise mistreated, but remember that all news is biased.  Not until you have the whole story, from both sides, can you move forward to correct a bad situation.  My mother once told me to believe none of what I hear, and only half of what I see.  It’s good advice.

10. Use the resources available to you.  In Maine, we have the Autism Society of Maine.  They’re our state branch of the Autism Society.  They are a wonderful resource for information and help.  Use other parents who have had similar issues with their own kids, or maybe have gone before you.  You don’t have to blaze this trail alone.  Don’t be afraid to call in outside help like Occupational or Speech Therapists, or an Autism Consultant.

Keep in mind that schools have the luxury to think of your child strictly in terms of his/her educational needs.  Don’t forget that there are other aspects to life: friends, play, rest, exploration.  Kids need a chance to be kids.  Education is very important, but so are socialization, family connections, life skills, and being a part of a community.  Your school is part of the larger team that will help your child become a positive citizen, and contributing member of society.   By forming a positive partnership with that school, you’re making the job a lot easier.

My babies at the Crystal Palace in Magic Kingdom, 2010.

My babies at the Crystal Palace in Magic Kingdom, 2010.

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    • Elesia on September 17, 2013 at 7:51 am
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    I am going to print this off and share with some folks I know. Also, if and when you might need them, Disability Rights can be super helpful.

    1. A wonderful addition, Elesia! Thanks for sharing.

  1. Ryan – you have such a great way with words and I loved how you put things into prospective. Great advice, very clear, and worth the read……..

    1. Thank you very much Cathy! That means a lot coming from you. Stay tuned, there’s more coming…

    • Nancy Moscone on September 16, 2013 at 7:33 am
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    What a wonderful post for all stakeholders of children with special needs. You covered the many “hats” worn at an IEP meeting with such professionalism and warmth.

    1. Thank you so much! I’ve sat in on a few – feeling like an old pro. I’m guessing that you’ve sat through a few, right?

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