IEP PREPARATION: CRITICAL INFORMATION YOU NEED

By Eric Sherman

If you are a parent of a child with a disability (e.g. hearing loss, autism, dyslexia, etc.) most likely you are receiving or will be receiving services from the school through an Individualized Education Plan (IEP).  As a parent, you are an important part of the IEP team and the process to develop the best educational plan that meets your child’s needs.  

Individualized Education Plan (IEP) meeting can cause a lot of anxiety for people, especially if you are anxious to get services in place to help your child at school. Far too often, parents will attend meetings unprepared without the proper information to be a productive participant in the development of their child’s IEP.

While at an IEP meeting, if you let the school present reports and goals to you, you are setting yourself up for a long and a potentially stressful experience.  Depending on your child’s disability the information provided can be daunting and tough to process often leading to a very unproductive, sometimes combative and emotionally draining meeting. 

As a parent, I got defensive after first hearing my son’s assessment reports. Instead of focusing on how to help create the best education plan to benefit my child, I was angry and arguing about what was being reported about my child.

Picture from Schoolpsychologyfiles.com

Often parents go into an IEP meeting trying to guess what the school is going to present…this is a big mistake.  As a parent, you have equal rights under the law to be an active participant in shaping your child’s education plan. Too many parents go to IEP meetings without information regarding their child’s educational needs. 

Prepare yourself; if it is an initial IEP or an annual review, you have the right to review present level performance reports and any assessments, as well as request suggested goals from service providers prior to your meeting.  These goals will need to be discussed and agreed to at the IEP meeting.   

We request the school to provide us with our son’s reports and suggested goals, at least 5 days prior to the scheduled meeting.  It is customary for the IEP team members to contact us in advance to discuss our son’s present level of performance and thoughts about goals.    For us, this has been the easiest and most efficient way to create the best education plan for our son. 

Here’s a version of an email I’ve sent, copying all the service providers, requesting information:

Dear {school administer},

For our child’s upcoming IEP review {date}, we request copies of all assessments, present level performance reports and suggested goals prior to our meeting.  This information will help us prepare and engage in a constructive manner that will help the IEP process move more efficiently.  Generally, there is a lot of information presented at our son’s IEP meeting and having this information (at least 5 days in advance) will help us get through the meeting in a shorter period of time.

We invite anyone on our child’s IEP team to contact us with any questions.  We can be reached by email or phone. We look forward to receiving the requested information as soon as available or at least 5 days prior to the scheduled IEP date.

Thank you for your help in this matter.

Sincerely,

By requesting this information prior to our IEP meetings, we’ve been able to move through the IEP process more effectively. This has enabled us to spend more time addressing appropriate goals and services and less time on reading and processing reports.   In many cases, the suggested goals provided prior to the meeting were appropriate for our child.  Thus, we were able to move on to goals and services that we felt needed to be discussed further.  Other times, the reports and suggested goals forewarned us there was going to be an issue with particular services. 

IEP’s can become very adversarial and stressful, especially if you feel you’ve been blindsided by the school.  Being alerted to possible issues, allows you time to investigate a solution and to discuss with the IEP team or it prepares you to look at your options if there is going to be a disagreement.

One of the reports and suggested goals we received prior to the IEP alerted us that the school was engaging in inappropriate and unprofessional behavior that violated our parental rights.  We made certain that this behavior was well documented at the IEP meeting in case we needed to go to due process.  To become more informed and learn the specifics to what we did, please click here and we will email part 2 of our story to you.

Remember YOU are an essential part of developing an appropriate education plan for your child.  Requesting reports and suggested goals, prior to your IEP will help you save time; keep you focused and better prepared to discuss your child’s educational needs.   It may alleviate some of the stress and anxieties that are associated with IEP’s.  It has certainly been helpful for us.

#SPED #IEP #Hearingloss #autism #specialneeds

MORE IS NEEDED TO EDUCATE CHILDREN WITH HEARING LOSS AND AUTISM SPECTRUM DISORDER (ASD)

By Eric Sherman

In its 2009–2010 Annual Survey of Deaf and Hard of Hearing Children and Youth, the Gallaudet Research Institute estimates about 40 percent of children with hearing loss exhibit another disability and notes the prevalence of Autism Spectrum Disorder (ASD) to be 1 in 59.^[1]  Early intervention is critical for the development of speech, language, communication skills and learning.  Some families are fortunate to discover their child’s hearing loss at a young age, so an early intervention can be implemented to help their child stay on track with their hearing peers.  What happens when you put your child through a cochlear implant surgery, spend years of AVT or speech therapy and it seems your child is making very little progress?

This was the case with our son.  Two years of AVT, after receiving a cochlear implant, it was becoming increasingly frustrating to find our son was nowhere near his hearing peers in communication and language skills.  We knew language development could be a long process, but something else was wrong.  Our AVT thought it best to seek additional medical evaluations to see if there was something else prohibiting our son’s language development.  After having evaluations done, our son was diagnosed as being on the Autism Spectrum or having ASD.  Having a child with hearing loss takes lot of work and commitment by a family, add autism to the mix and it is like trying to solve a puzzle without knowing what pieces are in play.

With intensive behavioral and speech therapy over the years, our son has done well.  He has become more verbal and can certainly communicate his needs and wants.  What is difficult is unlocking the doors into his learning style.   There is this blurred line between his autism and hearing disability.  When our son has difficulty doing school work; we are always questioning whether he is hearing the information, does he have a problem processing the information or is he just not interested in the material because it has no real meaning to his everyday life.

Our son has been lucky, over the past 3 years, having a teacher who is very creative and skillful in teaching and engaging her students in interesting ways.  Unfortunately, we have had DHH teachers, audiologists and other service providers struggle to help our son because of their lack of knowledge, training or willingness to learn more about ASD.

It’s clear from our experience, our school district is in need of more information and training of how to educate a child with a dual diagnosis of hearing loss and ASD.  They seem to address the disabilities individually as oppose to collectively, and how they may impact a child’s overall education.  We have a school audiologist who wanted to create a goal for our son where he tells his aid or teacher when his CI processors are not working.  This is a good goal and skill for a child with hearing loss.  Add autism to the mix and the goal may become very complex and difficult to achieve. 

A child with ASD may have to be taught what it means for their processor not to be working and then trained what to do after they determine they are not working.  Furthermore, generalization of whether the processor is “working or not working,” “broken,” or “on or off” could be confusing and difficult to understand.  Our son would consider his processor being “on” if his headpiece was attached to his head.  Also, a child with autism might like the silence and prefer not to notify anyone their processors are off. 

The dual diagnosis of hearing loss and ASD has been documented for the past 20 years; however, research and clinical guidelines on how to identify and teach young children with this dual diagnosis are sparse.^[2]  School professionals and educators need more tools and training to better equip the growing number of children afflicted with ASD and hearing loss.  Both Advance Bionics and Illinois State University have done work in this area addressing this issue and calling attention to the need for better diagnostic tools, early intervention and training of education professionals. Significantly more needs to be done!

More about Ci Wear

Ci Wear is a patented specialty shirt designed to secure cochlear implant processors or other mobile/hearing devices, adding a layer of protection to prevent wires from being snagged or entangled.  Shirts are manufactured in the USA and are available in youth and adult sizes. www.ciwear.com.

References:

1. When It’s More Than Hearing Loss
2. Autism and Hearing Loss: What You Need to Know to Help Your Families 

How Listening To Our Gut & Not Our Doctor…Helped Diagnose Our Son’s Hearing Loss

By Eric Sherman

As a general rule, we listen and trust our doctors when it comes to our health.  Why shouldn’t we, they went to medical school, spent years of their life training to be a doctor and they take a Hippocratic Oath.  But, doctors are people too.  They aren’t perfect and if your gut is telling you one thing and your doctor is telling you another, there are times you might just need to listen to your gut. 

It might sound cliché when someone says, “what is your gut telling you?” in our case, it helped diagnose our son’s hearing loss at an early age.

As with most parents, especially those with newborns or small children, anytime something seemed wrong with our child (i.e. runny nose, yellow poop, excessive crying, bright red ears, etc.), we called our pediatrician.  In most cases, our pediatrician addressed our son’s health issues, except the one time when we raised the issue about his hearing.

When our son was around six months of age, he seemed to be getting a lot of ear infections.  He wasn’t at the point of needing tubes, but it was a health issue.  Anyway, my wife and I went on a vacation and the grandparents watched our kids.

When we returned home, the grandparents raised a concern that our son didn’t seem to be hearing.  We thought this couldn’t be right as he had passed his newborn hearing test.  The grandparents did some simple tests (e.g. banging pots, slamming doors and clapping) to show us why they felt our son wasn’t hearing.  Admittedly, my son didn’t respond to those stimuli which seemed odd, but to other similar stimuli his behavior seemed normal.

After a few days and a lot of anxiety over whether our son had a hearing problem or not, we called our pediatrician.  We shared our concerns, expressed what the grandparents observed and asked about a hearing test.  His response was, “the grandparents are just a bunch of worry warts. I saw your son a couple of weeks ago, he had an ear infection and now he’s fine. I don’t need to see you again.”  Our gut told us otherwise. 

Feeling very uneasy and confused by the doctor’s flippant attitude regarding our concerns, we decided to find an audiologist who would do a hearing test on our son.  Generally for a six-month-old you would have an auditory brainstem response (ABR) test done to test hearing. After our conversation with our doctor, he didn’t seem interested in writing a prescription for an ABR test. We found an audiologist who ran some tests in a sound booth.  After about a ½ hour of testing, the audiologist turns to me and said, “I’m seeing enough red flags here to warrant an ABR test.”  The audiologist agreed to call our pediatrician to share her observation and recommendation.  Luckily, our pediatrician was out of town and the audiologist spoke to the “on call” doctor who wrote a prescription for an ABR test at a local hospital. 

The ABR results confirmed that our son had profound to severe hearing loss.  When our pediatrician received the report, he was in total denial and wanted us to have another ABR test done but this time at UCLA medical center.  Again, results found profound to severe hearing loss.

Our pediatrician’s response to our son’s hearing loss, “I guess we sometimes have to listen to the grandparents.”  No apologies for dismissing our concerns. He didn’t talk about next steps or options for us. Nothing!

This epic failure and lack of professionalism could have set our son back months if not years with developmental delays.  Luckily, we have family and friends in the medical field that provided help and guidance that allowed us to take matters into our own hands.   Our son now has bilateral cochlear implants and hears great.

The unfortunate thing about our story is that it is one of too many where doctors have dismissed a parent’s concern or another professional’s opinion (i.e. school audiologist or teacher) regarding hearing issues.

In the end, you should always follow your doctor’s instructions. But if your concerns are not being addressed or if you have a feeling in your gut that something is just not right, don’t be afraid to seek another opinion.  The more information you have the better decisions you can make regarding your heath.

BTW, we found a new pediatrician!

                                                                                                                                                  

Ci Wear is a patented shirt designed to secure and help protect cochlear implant (CI) processors and other mobile listening devices. Use as a rash guard, swim shirt or an exercise apparel. For more information visit www.ciwear.com