Thursday, July 19, 2012

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 4th 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 5th 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 7th 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.

Wednesday, July 18, 2012

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!!!

Sunday, July 1, 2012

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.