Raising Deaf/HH Kids | A Deaf Mom Shares Her World

Social Networking for Parents of Deaf/Hard of Hearing Kids

There’s a nifty little community building up over at Ning:

Parents of Deaf and Hard of Hearing Kids

If you’re a parent of a deaf or hard of hearing child/children, come and join us!

And if you have nothing better to do during your day, follow me on Twitter.

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Tags: Raising Deaf/HH Kids by DeafMom
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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!

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Tags: Raising Deaf/HH Kids, Uncategorized by DeafMom
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Guest Blogger–Another Mom’s Journey

Today’s post is from a close friend of mine, Sue Klytta. Sue and I met back in college and we’ve shared a lot together, including raising deaf and hard of hearing kids. We’ve had many conversations over the years about our kids and we’ve shook our heads at the twisting roads that we’ve gone down on together. We’ve made decisions involving our kids that we never would have imagined making at the beginning of the parenting journey. It goes to show that sometimes you’ll make difference choices at different times in your children’s lives. More than once, I’ve told Sue, “you need to share your story.”

So Sue kindly gave me the day off and here she is as a guest blogger:

Today, I am writing from the heart, as a deaf adult and as a mom to three children, one hard of hearing, one deaf, and one hearing child. Raising two children with a hearing loss, I often find that their journey is similar to mine growing up hard of hearing and deaf.

Lately, there has been so much joy on my oldest son’s face. Alex’s eyes light up. He smiles and laughs more. He signs more now. It’s so different today than it was a year ago. My son is hard of hearing. Last year, he started going to the Illinois School for the Deaf. He has been mainstreamed all his school years, he has never been in a self-contained classroom. His elementary years in school were fine, interaction with other kids focused more on physical play. In middle school, he had one friend who moved away. Once he started high school in our hometown, it was a whole different ball game. He became increasingly more isolated. He made less and less eye contact. He came home every day looking more discouraged. He cried tears of frustration after coming home from school. He stayed in bed and refused to get up. Today, he says he is liked by his peers. He can’t wait to go to ISD. I talked with Alex about his experiences at ISD. He summed it up for me very well, he said “Mom, I am liked”. He talked about how much fun it was interacting with other kids and how this school was changing his outlook on life.

My son Matthew also attends ISD. The first day I dropped him off at ISD, he looked so content. He now talks about his accomplishments with pride. His self-esteem has soared. This was a kid who previously hated to go to school. I had to drag him physically out the door and drive him to school. He said he felt invisible at his old school. He struggled to pay attention in classes and was diagnosed with ADD. I took him to a psychiatrist and therapist every two weeks. He was on medication. He suffered from poor self-esteem. No more! He loves ISD and his teachers are so positive about Matthew’s progress. I suspect that the deaf school works so well for Matthew because the environment fosters more cooperative learning and interaction. After a long talk with Matthew about his school experiences, I figured out why this new placement has made such a difference for him. At his old school, direct instruction was primarily used. Direct instruction is a type of teacher-centered learning in which the teacher is teaching a lesson and there is less interaction between students. Direct instruction is only beneficial when it is supplemented with cooperative learning methods. Group interaction is very important for learning. Matthew has told me that he feels free to interact in the classroom and he likes interacting with the other kids. He shared that he feels he is learning more. So with Matthew’s ADD, this type of learning environment has been very beneficial for him. As for the socialization issue, he is much happier. He has larger pool of friends to interact with. He is a social butterfly and this environment suits him well.

I feel like I know what both of my sons were going through. I myself was mainstreamed in my first year of high school with no support services and was the only deaf/hard of hearing student there. I was miserable. I transferred to a high school with a deaf program my second year. I quickly made friends with other deaf/hard of hearing peers.

Looking back, I realized that I never brought up my story in meetings with my sons’ teachers. I felt that this was about my sons, not me. But this is not just our story, it is the story repeated by many deaf and hard of hearing people.

This experience has been recounted many times by deaf and hard of hearing people like myself who grow up never meeting another deaf/hard of hearing peer. We talk about the experience of meeting other people like ourselves as “coming home”. One deaf adult I know talks about the feeling of coming home when she started meeting deaf and hard of hearing people at college for the first time. Another deaf adult was so lonely in high school, he transferred to the school for the deaf and learned sign language for the first time.

When I was visiting ISD, I attended the awards/graduation ceremony. I truly felt that we the deaf/hard of community were being acknowledged and honored. I felt valued. And I know both my sons feel the same when they are there. I did not feel this way when my sons were mainstreamed here in their home schools.

I am a deaf adult, I have traveled this journey. I was once hard of hearing, able to hear on the phone at one time. I have been in self-contained classrooms, I have been mainstreamed. I have been considered a “successful” oral child, I have learned sign language. I am now learning more ASL. I feel that my experience and the experience of many other deaf/hard of people is authentic and valid and I wish more people would reach out to us. Learn from us. We need to be heard. When I was growing up, I only met one deaf adult. And I am sad to say today, things have not really changed that much at all for deaf and hard of hearing children. There is no connection to the deaf/hard of hearing community. Frequently, there is no connection between deaf/hard of hearing children mainstreamed in their home schools either. Isn’t true that as human beings, we all need that emotional connection to those like ourselves?

While making the difficult decision to place my sons at ISD, I had moments of insight. My daughter is hearing. Everyday I would drop her off at her school. She was always so excited to go. I realized that she has a whole school full of equal peers. She would talk about the group of kids she sat with at lunch. She had friends sleep over at our house, they all would sit at the table talking and giggling. I realized then I wanted the same for my sons. And I knew my sons were not getting what my daughter got so easily every day.

I sometimes feel on the fence between both the hearing and deaf world. Every day I accommodate, I lipread so I can understand hearing people. I talk so that they will understand me. My son Matthew got the cochlear implant because he wanted to hear. I am considering one for myself as well. I also have a daughter, Katie, who is hearing. The hearing world is a huge part of her life and I honor that. She has a “second family” down the street. They are hearing and yes, they are part of her life. Hearing parents also need to give their deaf/hard of hearing children the opportunity to experience the deaf/hard of hearing world.

At the same time, I have respect for the deaf community as well. I am learning to be more proficient in ASL because my son Matthew is using it more now. I talk about deaf role models with my kids. My daughter is learning to sign more and more now with me.

When my sons grow up, I know in my heart they will not always be listened to and heard. I grieve that, because I know their experience will be the same as mine. Yes, it is a world where the majority can hear. Yet, they have so much to give and so much to teach others. It is my hope that other deaf/hard of hearing children will experience “coming home” with their peers. It is also my hope that when they grow up to become deaf/hard of hearing adults, they will have a “voice” and that they will be heard. And that they will be valued.

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