IEP Lessons - Part 2

This is the second part to my IEP post titled "Equal Rights."   These are just some of the things that I have learned through my experience with our school district. 

1.        Understanding  Your Role as an Advocate

·         It is not only our duty and obligation, but also our honor and priviledge to be the voice for our children.   There may be some stressful times, pressure filled meetings but it is imperative that we fight for the education that our special children deserve.

·         We need to direct our children’s education.   The IEP team can provide their expertise but you are the ultimate decision maker regarding his/her education.

·         We have our children’s best interest in mind.   The rest of the IEP team has 40 other students on their mind. 

·         By researching the most current methodologies, theories and curriculums, you will gain a knowledge base about how children with your child’s special need learn.

·         Understand the basic premise behind special education, which is the fact that the school district has to service our children with their unique special need.   They are not allowed to lump him in a classroom because they don’t have the right services available.   It is our job to hold the school district accountable.

·         Observe any classroom placement prior to agreeing to it. 

·         Have high expectations for our children and their IEP goals.

·         Ask for a copy of our children’s school district file on an annual basis.

·         Asks lots of questions and follow up to make sure that all questions are answered.

2.       Be Prepared

·         Use the assessments and evaluations conducted by the school district to build your argument.  

·         Write out your expected outcomes or goal for the meeting.  

·         Put together your thoughts in written form so that you can stay organized during the meeting.  

·         One of the best tools is to write out the timeline of every important event conducted by the school district starting with the evaluation, up until the current meeting.  The timeline will provide a big picture in addition to getting your facts and dates together.    

·          If you feel that the meeting will be contentious practice verbally ahead of time, even trying to predict what the school districts rebuttal will be to your request.   

·         Determine your emotional state of mind prior to going into the meeting.   (At one of our meetings that we knew was going to be especially contentious we decided that we would not refute anything said to goad us into an emotional debate, we stayed with the facts and ignored emotional comments made by the school personnel).

·          Have a friend come in and take notes during the meeting due to the large amount of information being passed back and forth between the school and parents.  

·         Follow up with the meeting with an email recapping what you thought you heard in the meeting and the stated outcomes.

3.       Understand the Legal Process of the IEP

There is an entire legal process that the school district needs to follow to meet our children’s special educational needs.   We need to know and understand the IEP process and what the school district is required to do to conduct the IEP, including the legal time frames and the denial process if we request a service and it is denied by the school.   Additionally, we need to familiarize ourselves with the IEP terminology such as Prior Written Notice, direct and indirect services, etc.

4.        Know Our Children’s Rights Under the Disability Law

Under the Individual with Disabilities Education Act (IDEA), there are 4 basic rights granted to children with special educational needs.  Know these and understand how they are applied to the to the individual educational plan; 

·         Free Access to a Public Education (FAPE) – Under this right the school district has to provide free access to an appropriate public education.   The school district is not required to provide the best public education, it only has to be appropriate.  

·         Least Restrictive Environment (LRE) – Students have a right to be with non-disabled children.   For some of us the LRE is having our children with other children like them such as hearing impaired children.    This right also includes that disabled children also should have access to any general education curriculum that is afforded a non-disabled child.

·         Supplementary Aids and Services – Aids and services to help a disabled child obtain success in ac classroom.

·         Assessments – evaluation of your child with quantifiable measures.

A great website to learn your rights is called www. wrightslaw.com

5.        Don’t Be Afraid To Ask for Help

If you think that your child should be receiving services granted under the IDEA, contact an advocacy group.   Their responsibility is to;

·         Teach us our rights under the law.

·         Train us how to be advocates for our children

·         Increase our expectations for our children.

·         Support us at IEP meetings when necessary.

Perplexed

I wanted to call this post "Mother Knows Best", but Perplexed is much more fitting.  For the past year I believed that Kai's hearing was much better than what his Auditory Brain Stem Response (ABR) revealed.   Recently, he was tested in the auditory booth by the Audiologist and she turned to me in sheer wonder and said he is consistently responding to hearing in the mild range!!!!   When he tested in the booth at a much better hearing level I jumped for joy because finally a professional was seeing what I have thought for the past year.   My concern has been that his hearing aids are too loud and that has been the main reason why he continually has pulled out his hearing aids.   Today, we had another sedated ABR to get a better reading on his hearing.   Previously, his left ear began hearing at the 35 decibel range for certain frequencies, which is considered mild and his right ear began hearing at the 50 decibel range.   The response of the second sedated ABR is that the 35 decibel range in his left ear has now dropped to 50.   The fact that it has dropped 15 decibals totally caught me off guard.   I swear that little boy hears so much of what I have to say when he isn't aided.   However, one-third of children that  have hearing loss due to Connexin 26 have progressive hearing loss.   I pray that Kai's hearing loss doesn't continue to progress.   In the meantime, I will remain perplexed how this little boy who isn't suppose to hear my quiet voice can follow my instructions perfectly.

Guest Post - Hearing Loss

A blog reader, John O'Connor recently emailed me and asked if I would be interested in posting an article that he had written about hearing loss. This article really resonated with me because as a parent of a child with moderate to severe hearing loss, I am now aware of how precious and important hearing is to our daily lives. We as a society take our own hearing for granted, we assume it is always going to remain the same. Thank you John for sharing your article.

Hearing Loss and Your Health

One of the most widely overlooked aspects of a person’s health is their hearing. Every year, people have annual physicals, their vision checked and visit the dentist, but having one’s hearing checked is done very little in comparison. Hearing loss is commonly seen as being an issue that only affects senior citizens, although this is a huge misconception. In reality, anyone, from very young children to the elderly, can suffer hearing loss. According to NIH Senior Health, approximately 36 million American adults claim they have some hearing loss and that the problem is more common in men than in women.

Hearing loss can occur for a variety of reasons. While some instances are inherited genetically, many more are due to an exposure to noise. Referred to by the acronym NIHL, noise induced hearing loss is something that is completely preventable and typically affects individuals who have jobs that involve constant noise, such as construction workers, those who travel regularly by public transportation mode the subway and people who attend concerts or other loud events without protecting their hearing. A pair of earplugs that are made from wax, foam or even those that are made at an audiologist’s office that are specially molded to one’s ears are excellent for protecting hearing.

While they can only reduce noise by between 15 to 25 decibels, earplugs are effective.  Other health issues can come about as a result of hearing loss. The most common is tinnitus, which is essentially a high pitched ringing or hissing in the ears that is most noticeable when the person is in a quiet situation such as going to bed. Tinnitus cannot be cured and cases range from relatively mild to sometimes sever. 

When hearing loss is enough of a problem to affect an individual’s everyday life, it is a good idea to make an appointment with an audiologist and consider possible treatments such as getting a hearing aid. Today hearing aids are smaller than ever with the progression of technology so that they can be inserted into the ear without anyone even noticing. Getting a hearing aid when it is needed can help a person recapture some of the hearing they once had.

About the author: My name is John O'Connor, over the past few years I have become more and more interested in hearing loss. My father and grandfathers along with many other family members and friends are affected by hearing loss. I feel that there is a general lack of understanding around the issue and it is right to try and spread awareness where we can. My new blog can be found at bloggingwjohno.blogspot.com, check it out!

Equal Rights

I wanted to write a post sharing our story regarding our fight with the school district to enroll Kai into the public auditory/oral program.   We requested twice that he be enrolled into the public school and twice they denied him.   Unfortunately, the post doesn’t express the raw emotions that I went through this past year during that fight.   Many times I felt hopeless and didn’t know where to turn (besides to God).   I had 8 meetings in 9 months with the school district, most of which were contentious meetings.   Anybody aware of IEP meetings know there are 20 individuals from the school district that attend and only 1 you.   I went in to the program not knowing my rights and didn’t know what my role was in directing Kai’s education.    Eventually I learned my rights and found my voice.   I will never let go of being the ultimate decision maker of Kai’s education ever again.    Here is our story;

Kai started receiving early intervention services through the school district once he had been home for a year, which was May 2011.    His services consisted of an hour long weekly speech therapy, and monthly physical and occupational therapy which was all conducted in my home.   We also take Kai to private therapy for speech and PT.    I went into the early intervention program, uneducated about the process and naïve about how to navigate the system.   Kai had been receiving services for two months when we discovered through the ABR (sedated brain stem response) that his hearing loss was much more significant than we initially thought.   He was diagnosed with a bilateral moderate to severe hearing loss.   The impact of his hearing loss hit me immediately!   This hearing loss is going to affect every aspect of his life, from his education to his safety to his social life.   I realized immediately that the services that he was being provided at home were not going to meet his language and communication needs.   He needed something more than what I or the school district was providing him at that point.    I asked the school district to enroll him into the Auditory/Oral program where hearing impaired children learn to listen and talk.   I went into my first IEP meeting unprepared and naïve because I thought a hearing impaired child would automatically be enrolled into a school that would meet his language needs.   The A/O program is a public school, so he can’t be denied access… right?   Wrong!   It was apparent from the start that the people from the A/O program upon seeing Kai did not want him enrolled in their program.   They began stating all the reasons why it would not be an ‘appropriate placement’.   Believe me they don’t come out and deny your child flat out.  There is legal terminology that they can and can’t use, the word “deny” is never used, “inappropriate placement” is the new terminology to deny access.   My school district concurred with the Auditory/Oral staff and stated that they had a language enriched environment right there at the Early Education center that would meet all of Kai’s needs.   I was foolish or naïve enough to believe them and agreed that Kai should attend it.   At this point, I believed that everybody else on Kai’s IEP team were the experts and more importantly I believed that they all had Kai’s best interest in mind.   Unfortunately, I had abdicated my role to them.    I observed the local program that they described as language and verbally enriched and immediately declined to enroll Kai.   All of the children were lying on mats with the only way to communicate was to cry or grunt.  This was for severe special needs children who were NEVER going to communicate.   I was stunned and didn’t really understand what had happened in the IEP meeting and how anybody would think that this is the right environment for Kai.    Kai went back to receiving services at home again.  In November, we reviewed the goals that were set in May and Kai was making progress with both his gross and fine motor skills, but his language had not progressed at all.    I was really starting to get nervous about Kai’s future, his language, how were we going to get this child a method of communication?   I asked again if he could be enrolled in the public auditory/oral program.    We had our second IEP meeting in December.   I was told “off the record” that Kai was going to be accepted at the auditory/oral program this time.    I asked to observe the program prior to the IEP meeting and I brought Kai with me.    A day later at the IEP meeting the teacher from the auditory/oral program started the meeting by saying “That their program was an ‘inappropriate placement’ for Kai.”   Shocked!  Dismayed!  What???  A denial again!!!  I sat through the rest of the meeting sick to my stomach.   I felt like someone had just told me my child had cancer and only had 6 months to live.   What was I going to do with this child that was not learning to communicate???   Panic was starting to set in!!!!   Once again our school district offered a special education program that was not suited for a child that is hearing impaired and again I refused the placement.    I couldn’t believe that in the year 2011, a child could be denied access to a public school.   I found out later that when the A/O teacher met Kai she thought he was a “handful”.  She was overwhelmed already with too many kids, in too small of space and the thought of Kai being added to her classroom put her over the edge.   At night after the kids were asleep I started to research and educate myself about our legal rights.    In January, with no other auditory/oral public options, we enrolled Kai into a private auditory/oral school called Northern Voices.   Let just say God has a way of working things out for you, it was the perfect place for Kai.    We could only afford for Kai to attend 3 days a week, so we continued with his home based services through the school district on Thursdays and Fridays.   The week that Kai started Northern Voices I asked to meet with the school district again because I was going to ask them to pay for Northern Voices since they are the ones that deemed the public school “inappropriate”.   I never got very far in the meeting because once I said the magic words “denied access” the whole tone of the meeting changed.    All of a sudden the public auditory/oral program was an “appropriate placement” and if we wanted him to go there then yes, he could go there.   WAIT!  Here was a problem…I LOVED Northern Voices.   They were hopeful for Kai, they wanted him and they saw him as full functioning person rather than a disabled child unlike the school district.   More importantly, the public auditory/oral staff had now convinced me that the A/O public school was not an “appropriate placement”.   When I went to observe it, what they said about why it would not be appropriate for Kai was accurate, it was overcrowded, there were safety concerns due to Kai’s Ataxia and the school was geared toward older kids.   Here is the deal though the school district can’t deny your child access because of over-crowding and safety concerns.   By law they have to meet a child’s educational needs if they can’t meet it in the public school they need to pay for the private school.   Another problem for the school district was the fact that Kai was turning 3 in February and switching from an IFSP (home based services) to an IEP.   By law they have to have an IEP in place by age three.  The IEP is based on all new assessments of Kai that need to be conducted.   None of the assessments were even started by the beginning of February and there was no way that they could put an IEP in place by his birthday.    Kai continued at Northern Voices and received services at home while the IEP team conducted assessments and put together an IEP.   Unfortunately, the school district put together an IEP before the assessments were conducted.    We had our 4^th IEP meeting in February to discuss placement for Kai once he turns 3 years old.   I wanted the school district to pay for Northern Voices.  I began working with an advocate from the Pacer organization (they work to ensure that disabled people receive equal rights, they truly are my hero!).   In brevity my advocate concluded that the school district had not followed the law for any of the meetings or evaluations of Kai and there was no documentation that the school district could provide to prove otherwise.    My advocate is a seasoned professional and she said to me multiple times that she has never seen such egregious errors.   After reviewing all the documentation or lack thereof from Kai’s school file she called me and apologized and said that Kai was not being served well by the school district.   She told me that there were so many missteps that from a legal standpoint I could and should file a complaint with the MN Department of Education.   They would investigate how Kai was served and if any laws were broken then they would follow up with the school district and possibly they would make the school district pay for Northern Voices.   I put the idea of the complaint in my back pocket and continued to work with the school district.   We had a 5^th IEP meeting in March where we finally discussed Kai’s assessments these are usually done prior to the IEP placement meeting.   Regardless of when I received it, the evaluation was alarming!  Kai was   -3 STD from the mean in all language aspects!!!    I knew that Kai was not speaking but seeing it on paper in a quantifiable way really gave me that punch in the stomach.    I felt the assessments bolstered my case for the school district to pay for Northern Voices.   The IEP was finally completed a month after his birthday and I refused to sign it since they wanted to send Kai to the public auditory/oral school rather than pay for Northern Voices.    The discrepancy between how much individual speech the public and private school were willing to give Kai was significant.   Next we had a Conciliation meeting with the school district to determine if we could come to terms with an IEP that would be acceptable to both of us.    Unfortunately, we could not come to terms and once again we refused to sign their proposed IEP.   This led us to our 7^th meeting which was Mediation and is facilitated by a lawyer who is employed by the State of MN.   Our advocate attended this meeting along with Dan and me.   My goal was to get the school district to pay for at least a year of Northern Voices to make up for the fact that they denied him access twice and he wasn’t getting the appropriate education he needed.  To me this was the only satisfactory outcome of the meeting.   I was ready to file a complaint with the MN Department of Education if the school district didn’t concur and to take it to a court of law.    However, the school offered us a deal to serve Kai and after much discussion we agreed to it.   Mediations are confidential so I won’t share the specifics in this post.     Personally, I didn’t want to take the offer because I didn’t want to relinquish this opportunity because I really believed that we had the school district on the ropes and once we let them off the hook, we lost our opportunity and won’t be able to get it back.   I didn’t think the meeting would take long but it lasted an entire 6 hours!   It was emotionally draining to say the least.  

The first couple days after I signed the agreement I really felt that I had failed Kai.   I felt that Northern Voices was the only program that could teach him to speak.   However, since then my feelings have changed and  I am very excited and hopeful for Kai that the public auditory/oral school will serve him well and that he will continue to progress.    The entire public A/O school is changing from how it looked last December.   They are moving from a 1 room classroom where they were serving age 2 through 5, to a newly constructed building which will house the A/O school which will have 3 separate classrooms and 3 separate speech therapy rooms, the Early Childhood Intervention Program and the Pediatric Rehabilitation Center (where Kai receives his private speech and PT therapies).   The best part of all of it is that the newly constructed building has moved from a town approximately 20 miles away to our hometown.    We will give it a try and we always know that Northern Voices which is an exceptional program is always there for us.   We can choose for Kai to go there at any time. 

There are so many lessons that I have learned this past year regarding working with the school district and I will share those with you in Part 2.

Summer Fun...Having a Blast!!

 Bei and Anna became fast friends despite the three year difference in age

 They hung together all weekend

 Beautiful Elizabeth joined the festivities with us

 Almost inseparable...

 The Gorgeous Belle (Kelly) and Bei had a tickle war...I think Kelly won!

 Lots of fun tubing with Bei's beloved Gina

 I don't think these two stopped laughing the entire time tubing

Hang on!!!

An Old Zen saying...

Empty your cup so that it may be filled...

 with brotherly love,

                       

with the love between a father and son,

with the most wonderful friends and family,

and with the most lovable oreo encrusted little face.

                                                

Strong Enough

Bei with one of his very favorite people, John.  People would be shocked to find this 50+ year old man hiding in closets and playing hiding and go seek for hours with his little buddy. 

Those of you who have followed my journey understand how challenging these past two years have been.   The first year with Kai was physically exhausting because of his inability to hold himself up and my exhaustion was compounded by the fact that he screamed inconsolably every single night and couldn't sleep.   Additionally, we were still identifying his medical needs.   As Kai's mobility improved in the second year I faced new challenges.   Trying to get the right services for him so that he can have a language.  Here was this bright little boy who was diagnosed with bilateral hearing impairment and he was virtually locked in from a communication standpoint.   Kai not only has oral motor delay which makes speaking hard, but he has ataxia which makes sign language even the more difficult.   This past year I have spent most of my time trying to get the right services for Kai through the school district.  It has been a battle to say the least.  I won't get into all the details in this post but I did think at one point it would be resolved in a court of law.  

Through all of the trials and tribulations of the past two years there came times when I thought this is bigger than myself and I can't do it on my own.   It was at those times, that I felt humbled before God and knew that this is His show and I am just an instrument for him to use.   There was a song that played on the radio that resonated with me this past year.   I wanted to share it with you because I think it speaks to so many different situations and different needs.  I hope you enjoy it. 


http://www.youtube.com/watch?v=A8JsRxVczmQ

With all that said, I would not change one minute or one day of these past years.  I have learned so much about love, life, people, and God.    Most importantly I have learned that my life is not about me, it is about serving others so that I can bring Glory to God.   It has all been so rewarding and worth every arse kicking I got...and I got alot these past 2 years!