IS THERE AN "I" IN IEP

By Eric Sherman

According to the Department of Education, “each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document.

To create an effective IEP, parents, teachers, other school staff--and often the student--must come together to look closely at the student's unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. Without a doubt, writing--and implementing--an effective IEP requires teamwork.” 

If the IEP is designed to be a collaborative process, why are parents always fighting for their child to receive appropriate services or school placement? 

We have learned over the years it doesn’t matter what the IEP team recommends, it comes down to what the school or the District wants to offer and the parent agreeing or disagreeing with the offer.

The first time we were hit with this reality was when we were requesting more speech for our son in a very contentious IEP meeting over speech services.  Our son has bilateral cochlear implants and is on the autism spectrum.  His co-occurring disability poses a lot of challenges, so we argued our facts and reasons why more speech was needed. The speech therapist, who never worked with our son or had conducted an assessment, explained to us that our son was being offered the same amount of speech as all the other students receive.  Needless to say, we jumped on the statement claiming the IEP was not individualized to our son, but predetermined by the District. The school district agreed to the additional speech hours, but has been trying to change our son’s speech services in every IEP since. 

We have found over the years, our IEP teams have not always been made up of knowledgeable school personnel looking to develop an educational program that is individualized to our son’s needs. We’ve had to fight school administrators, who’ve never met our son or lack any understanding about his disabilities as well as school service providers, who’ve never worked with our son, then write IEP goals and suggest inappropriate services.  We’ve even had school placement offered to us, when no one on the IEP team even knew anything about the program being offered.

For the most part, schools and school districts will do their best to create an IEP for a child with special needs within the bounds of their budgets, personnel, services and programs they have available.  But individualizing a program outside those limits becomes a real fight for parents.

If an educational program is to be truly individualized to the student’s needs as the law intends, those on the IEP team (including parents) need to be fully knowledgeable and have a good understanding of the student’s disability and their needs. It is imperative for the IEP team to know about all available services and school programs that appropriately address the student’s individual need without prejudice.

As long as schools districts consider limits on what they can offer students with disabilities, the “I” in IEP will always be hard to define. Parents have to be knowledgeable advocates for their child to make sure the "I" means individual. 

Please feel free to leave a question or comment about your child’s IEP and we will be happy to respond.  The more parents share, the better prepared we are to help our children with special needs.

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 

Lycra Swing – A Great Way to Address A Child’s Spinning Behavior

By Eric Sherman

Shortly after my son received his first cochlear implant and started to become mobile, we noticed he enjoyed spinning in circles.  He would look up at the ceiling and spin in circles, laughing.  Spinning is fun for children and it also helps them learn body control, balance and focus.  Our problem was our son was constantly spinning to clearly satisfy a sensory need, it didn't seem like a game or casual fun for him.

Our pediatrician thought our son’s spinning and other sensory seeking issues may be related to his profound hearing loss and recommended we see an occupational therapist (OT).  Our OT worked on body awareness, coordination, balance, focus and control and it all helped, but our son’s spinning motion seeking behavior continued.  This not only became a problem for him throughout the day, but an issue at night.  Our son was very restless when we tried to put him to bed.

We had a backyard swing but that was not satisfying our son’s sensory needs either.  One day, while at OT with my son, I began to look around at all the apparatus and equipment they had and found my son really liked to be bounced around in this lycra hammock.  The OT would use it either as a reward to get my son to finish a task or to refocus his attention.  I quickly realized this is something I could make at home. 

I went out and purchased a large piece of nylon/lycra fabric and tied it to a carabineer which I attached to a swivel hook (items we picked up at REI and a local hardware store) and hung from a beam in our living room.  The whole set up cost me about $80 which was a lot cheaper than anything you can find in a therapy product catalog.  The fabric hung down little more than half way to the floor. Once my son was inside, his weight would pull him down to about 18-24 inches off the ground.  Everything was measured out so he wouldn’t hit the walls or the ground when swinging.

The lycra swing worked great! It gave our son a real snug feeling, while enabling us to push him in tight fast or large slow circles helping provide the sensory input he was seeking.  Our son became calmer, less fidgety and more focused.  His daily need to spin himself dramatically diminished.  At bedtime, the swing helped settle his body down allowing him to fall asleep much easier.

OT really helped our son, but it was the lycra swing that got us through the day and down for the night.  If you developed something to help address a family member’s sensory seeking needs, please share.  Hopefully, it may help someone else.

#lycraswing #cochlearimplants #autism #ciwear

                                                                                                                                                  

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