Ageless Passions by Karen Putz

Tag: IEP

  • The Last IEP Meeting

    It hit me like a ton of bricks this week when the school counselor remarked, “This is the last IEP meeting for David.”   I looked at my son sitting next to me.  How did the time fly by so fast?  He was a little toddler when Joe and I sat in on his first IEP meeting.  David had just turned three and was diagnosed with a profound hearing loss just a short time before that.  I had attended many other IEP meetings as an advocate for other families, but it was a whole new ballgame to sit in the IEP meeting as a parent.

    One of the hardest things for me to do was to put him on the bus for a 45-minute ride to school.   It was hard to trust someone else to drive my child, hard to trust someone else to care for him and protect him.  I didn’t like the bus driver, a young man who seemed distracted.  My gut feeling kept telling me that something was wrong.  A few days later, I went to get David off the bus and spied a half-smoked cigarette on the floor.   That was the last time that bus driver picked up my kid and I requested an aide on the bus after that.

    David attended a school with a deaf program for three years.  In kindergarten, the supervisor came up to me and told me that they felt the best placement for David would be in his home school district.  I struggled with that view, because I grew up solo in the mainstream– I was the only kid with hearing loss all the way up until I met Shawn Haines in high school.  Then it was solo and a friend.  I didn’t want that for my kid.  I wanted to make sure he grew up with deaf and hard of hearing peers.  So at first, I balked at the suggestion.  Joe and I had days and days of discussion, wrestling with the decision.  Should we fight to keep him in the deaf program or should we try the mainstream option?

    Finally, we came to the conclusion that we would give the mainstream option a try, with the intention of putting him back in the deaf program if it didn’t work out.  From day one, I was determined to make sure he had a different experience than what I went through growing up.   Our subdivision had built a brand new elementary school right across the street from our house and it was just about to open up.  I went in and introduced myself to the principal, Randy Vanwaning.  That turned out to be one of the best moves, because Mrs. Vanwaning stayed on our side throughout the whole elementary school experience.

    There’s a saying that I learned at a MOPS (Mothers of Preschoolers) conference years ago:  “Bloom where you are planted.”  Once we decided that we were going to mainstream the kids, we kept that philosophy with us.  We made the best out of it.  I volunteered at the school and in the school library so that I could get to know the staff and the teachers.  I went into class and read books to the students using sign and voice.  I became involved with local playgroups and neighbors.  The school hired an interpreter whose parents are deaf.  Mrs. Mac is still interpreting today for Steven.  Mrs. Mac started an ASL club at the school.  The music teacher embraced sign in every single concert that the school put on and Mrs. Mac volunteered her time to teach the students one song per concert.  Many of the students signed the school song at assemblies.

    There were many experiences along the way that were challenging and it wasn’t always easy. I teamed up with Janet Des Georges to write The Myth of the Perfect IEP as a result of those challenges.  I often reminded myself that it would have been the same in any environment– it’s the nature of the journey and of life.   There were times when we questioned our decisions and explored options and considered changes.  One of the most difficult IEP meetings we ever had was David’s transition to high school.  A staff member felt strongly that we should keep him in the home district.  We felt differently– we wanted David at Hinsdale South, where he would have deaf and hard of hearing peers as well as a mainstreamed education.  We couldn’t come to an agreement at that meeting.  That was a meeting where tears were shed– I’ve had a few of them over the years with the three kids for different reasons.   We worked out that agreement and it paved the way for a smooth transition for Lauren as well.

    At David’s last IEP meeting, I sat and thought about all of this as I watched him talk about his experience at the “Explore Your Future” camp to the VR counselor and the district representative.  I sat in awe as I watched him share his views of what he wanted for his future– this little boy of mine has turned into a young man– when did that happen?   I thought back to preschool, and how he cried during the Christmas show that the teachers put on.   The teachers tried to encourage him to say his lines, but all he did was sit in his chair and cry while the other kids took turns saying and signing their lines.  I look back at that time and laugh, because I have a son who can get up on stage and put on a show now.  Go figure.

    For a long time, I was the parent teaching the child–guiding David through life and sharing what I wanted him to know.  Lately, I’ve been aware of how much the roles have shifted, I’m learning things from my son.  When we head to the gym together, he teaches me things about muscle development and he becomes my coach as he runs me through drills.  “Come on Mom, you have to do one more set”– which sounds a lot like the stuff I tell him at home:  “Clean the bathroom and sweep the living room.”  Just yesterday, he made a stir-fry dinner while I was glued to the computer and I was surprised at how delicious it was.  There he was, sharing his newly-made recipe with me and teaching me how to make a better stir-fry.

    I mentor families who are just starting out on the journey of raising deaf and hard of hearing kids and the beginning of the journey always seems so overwhelming, so impossible, so challenging.  “Hang on to every bit of time that you have with your child,” I tell them.

    Because before you know it, in the blink of an eye, all of a sudden, the last IEP meeting arrives and you wonder how it went by so fast.

  • Working with Your IEP Team

    With three kids on Individual Education Plans (IEPs), we’ve killed a couple of trees throughout the years with the paperwork that gets generated by the schools when developing each kid’s IEP plan.  Once  a year (and sometimes more if we have something to change), I meet with each child’s team to go over the goals and communication access plans.

    I learned right away that having  a perfect IEP is a myth– there will always be things that go awry or teachers who are unaware of what’s on the IEP.  Janet DesGeorges and I teamed up and wrote The Myth of the Perfect IEP: After the Paperwork is Finished.”  One of the most crucial pieces of advice in that article is to find someone who can act as the MVP of your team:

    Among the team that is assembled to deliver the services and supports for your child throughout the year, there is often an MVP -that professional who goes the extra mile, who supports you when you are advocating for your child, who you tend to call on when there is a problem. Whether that person is your child’s general ed. Teacher, sign language interpreter, Teacher of the deaf/hh or a speech language pathologist, you can create and sustain a positive relationship throughout the year by communicating regularly, contacting them when there are things to be celebrated, and not just complaints to be delivered etc. and to be able to create strategies for effective communication access.

    If you can’t think of one person on your child’s IEP that you would consider an MVP, start thinking about who you could begin a positive relationship with in order to be able to collaborate with throughout the year, and be able to call upon for help when something falls through the cracks.

    When my oldest son first attended the school down the street from us, I made it a point to go and meet the principal and tell her about David.  She became an ally and an important part of the team.  I also volunteered in the school for parties and at the library, getting to know the staff and the teachers.   I spoke with each kid’s class during the early days, reading books and introducing signs.

    When I work with families, I tell the parents that they are the case managers for their kids.  The idea of parents acting as case managers on the IEP team may strike some parents as strange, because aren’t schools supposed to be doing that job?   But here’s something to think about– the parents, are the ones living daily with their child from the time they enter the family to the rest of their life.  The parents are the one steady part of the IEP team that is always there.  

    There are two books that I regularly recommend to parents:
    Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

    The Complete IEP Guide: How to Advocate for Your Special Ed Child

    Another neat tip that I learned from a parent long ago, is to put together a binder to keep all of your information together. Unfortunately, I was never organized enough to accomplish that. Some of the parents I’ve worked with have created booklets to give to each team member when transitioning from early intervention into a school. In the booklets, they include pictures of their child at home and at play with a paragraph or two (sometimes more) describing their child, including helpful tidbits about communication or assistive equipment.

    You may find yourself in challenging situations where the IEP team does not agree or you may be presented with questions or statements that are difficult to answer.  Hands & Voices created questions with answers that parents can use at an IEP meeting:  Pop-Up IEP.    You’ll also find the IEP Checklist helpful for figuring out what your deaf/hard of hearing child might need in their IEP.

    If you have IEP tips, lessons or experiences to share, I would love to hear them in the comments below.  Have you had an IEP situation that was challenging or that went well–share it with us!