About our Daughter

I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.

How Did You Know She Was Bipolar So Young?

I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Never change, start or stop a medication without the approval of your child's physician!

Saturday, January 22, 2011

A Great Example of Using an Educational Advocate

My youngest sister Jen has four kids, two of whom, the boys, are both on the autistic spectrum.  The oldest boy, "Bobby," age 12 and in the sixth grade, is diagnosed with Aspergers Syndrome, and the second oldest has autism and a host of other physical issues.  Just recently, my sister went through a very difficult time with Bobby's public middle school and I asked her to share her experience so that others might benefit from her struggle to get her son what he needs in school.  So, with her permission, I am offering her story:

"About ten days ago, my son left for school via the special education bus, as usual.  He was late, flustered and overstimulated by the noisy ride (he later told us three kids on the bus were screaming and crying.)  After arriving at school, he was standing in the hall by himself, except for a teacher, who did not know my son, or his diagnosis.  She observed him talking to himself, which he often does when agitated, and she asked him what he said.  He replied, " I am making a list of people to kill if it wasn't against the law."

Understandably, this teacher was concerned and reported him to the office.  He was called to the office and he sat for over three hours, speaking to the assistant Principal who asked him what he meant by his statement and he told her he was just really mad and hated some people right then due to the noise and his being tardy to class because of the disruptive bus ride.  Then, I was called, again three hours later, and informed that he had made a verbal threat and would be recommended for expulsion.

I was completely blown away.  I rushed to the school, came into the office, saw my son sitting there looking very forlorn, and told him it was going to be okay,  and that I wasn't mad and gave him a hug.  We went back to see the assistant principal and she told me the procedure for expulsion was that it had to go through a committee meeting first called a "manifestation determination meeting" (MDM) which would decide if his statement was related to his disability or a failure on their part to follow his IEP.  I was told to show up on Monday (this was Thursday) and then we were escorted out after we were told he was immediately suspended from school property until the meeting.  I felt like I was being dismissed very abruptly by the assistant principal when I had many more questions.

I got into my car and began to cry in spite of trying hard not to.  My son asked me what was wrong and I asked him, "Do you know what you said, Bobby?"  He stated what he said and what he meant by it, and I told him that because of his statement, he was likely being thrown out of school.  He got very sad and proceeded to lament that his life must be over now, no college would be in his future,  and thus no job all because of what he said.  Of course I reassured him this was not true, this was just a bump in the road and we would just keep going.  He is a middle schooler, I remind you!

As the day progressed, I got angrier and angrier.  Some things didn't add up here.  He has an IEP, how can they just throw him out?  What about talking to him and determining there was no real threat?  How about detention?  Why did it take three hours for them to call me?

I decided to look up the school division disciplinary policies  and they do state that for certain types of behavior, children  can be expelled even if they have an IEP.  But I also noticed that if a child deals drugs on campus, they are not expelled, but receive a 45 day suspension.

My husband and I decided to find a professional educational advocate who would walk us through all of red tape because it all seemed overwhelming.  The  next morning I called a woman who lives in the area and has her own business representing parents of special needs kids in the Virginia Beach area, called Advocating 4 Kids.  She was very nice, and when I related the details, she was immediately sympathetic, stated she had several clients at this school, and greatly dislike the administration there because of its inane ways of dealing with these kinds of situations.  When I told her they scheduled the "Manifestation Determination Meeting for Monday, she told me to immediately put in writing that we would reject that date and request three other possible later dates, which we promptly did. 

Fortunately, we had already had a psychiatry appointment on the books for our son before all of this transpired.  I notified that staff of what had happened and that I would be requesting special help from the doctor in the form of a letter after we met with her.  The psychiatrist met with us and she also heartily agreed that there was no intent behind his words, only thoughtless verbalization, which is so common to Aspergers.  She agreed to write a letter on our behalf to the school.

I called the advocate on Monday and hired her to come to the MDM meeting on Friday.  I gathered and copied all of the documentation I could about my son and the school division regarding his IEP, etc.  and I called his primary care doctor who also has son with autism and is well regarded in the community as a champion of special needs kids.  He promised to draft a letter as well.

I then also hand-walked a letter into the school about the fact that our meeting would be recorded as is permissible by law.

On the day of the meeting, we met the advocate a few minutes before, and the assistant principal made a bit of a deal I didn't give proper notice about bringing a professional advocate, and I was nervous about her attitude when she disappeared into the meeting room before we were allowed back, I suppose,  to check on the policy regarding advocates.  My advocate remarked that they know darn well that parents can bring anyone they wish to a meeting.  

We were escorted back, and we found that the group consisted of the assistant principal, a teacher familiar with Bobby's diagnosis, a special needs case manager, and a special education coordinator for the school division, but noticeably absent was a school psychologist and the teacher who initially questioned my son.  My advocate handed out the release of information documentation to all present.  She then handed everyone copies of the doctors' letters and we also handed out the DSM manual definition of Aspergers Syndrome.  The special education coordination was in charge of the proceedings and stated that the committee would need to come to a consensus not a vote.

The assistant principal was asked to describe the incident as told to her by the witnessing teacher.  The assistant principal said that my son had made a written statement as well as a verbal statement.  This "written" statement, interestingly, never made it home in the packet of papers they sent me.  And, as it turns out, this was not a statement written by my son, but taken in third person by someone else and he was made to sign it!!  It used language that my son would not have used in reference to himself.  This made me so angry that they would make my son sign something before I was ever called!! The advocate jumped in and said that this was not proper procedure since it was paraphrased and in third person.  The school kept trying to say it was his own words.  The advocate retorted that by not having the actual witnessing teacher present they were denying the parents' due process, which they refuted.  

The advocate was adamant that the recommendation of expulsion was not the reason for the meeting, but to find out what had actually occurred and if the conduct was related to his disability.  The special ed coordinator kept interrupting, but our advocate made sure that our voices were heard throughout the meeting.  We discussed his IEP and his qualifications for one due to Autism and ADHD, and the fact that his IEP states that if he is agitated, he should be able to have a time out in a quiet space until he is calm. His extensive psych-ed testing that we went over states very clearly that he has a very difficult time letting go of ideas regardless of possible consequences, as most children with Aspergers Syndrome do.  

We also discussed the letter from the psychiatrist extensively, which helped our case as it was quite detailed, and stated that expulsion would not serve his best interests, but rather that he needs protection from bullying and a supportive environment with guidance from a full time aid.

The question for the MDM to decide was whether this incident was due to his disability, to which they agreed yes.  The question as to whether or not it was due to the failure of the school to follow his IEP was denied.  The advocate again brought up her reasons for disagreeing with their assertions that his IEP was followed, including that  goals and strategies given in his IEP were poorly written and overly vague.  

My husband brought up the fact that our son has been bullied at this school, is all of 12, but emotionally much younger, and asked them to do a much better job monitoring the situation and intervening on his behalf.  It seems to us as though they have not truly recognized his disability as being in the category of "special needs"  evidenced by the fact they asked him to sign a statement without a parent present that violated our son's rights.  

In the end, they chose not to expel him because the committee decided that his behavior was related to Aspergers Syndrome and that his IEP needed to be revamped based on a Functional Behavioral Assessment (FBA) which has never been done.

I am so very glad we hired this advocate.  We never would have been able to bring up all of the things she did so expertly.  She was not intimidated at all by the assistant principal or the committee and was able to bring in all the relevant data.  And she was very effective at pointing out the shortcomings of both the IEP and how the situation was handled by the assistant principal.  Our advocate was worth every penny and we would not hesitate to use her services again in the future.  

At this point we are waiting to see if our son's school record will be corrected so that it does not state that he has had seven days of suspension or a recommendation for expulsion.  I also wrote on the document they wanted us to sign at the end of the meeting that my son needed protection from disciplinary actions until the FBA is completed.  


Truthfully, we have decided that will likely home school our son for the rest of the year in spite of all of this because of how traumatized he has been by the bullying from other kids and our lack of confidence that his holistic needs can be met in the public school.  But I am so glad that we stood up for our son and his rights when the "easier" thing would have been to just acquiesce to the incompetent decisions of this school division and allow them to expel him for what was a manifestation of his disability. "


I am so proud of my sis and the way that she took action when the deck was stacked against them.  We have a huge job to educate the educators about the symptoms of Aspergers Syndrome, and its cousin, Early-Onset Bipolar Disorder.  These kids deserve to be understood and cared for in the same way as any child with a physical disability.  They have "invisible" disabilities that are often overlooked when their behavioral symptoms gain them the wrong kind of attention.

Let me know of your experience with an educational advocate!  





"

6 comments:

Unknown said...

Wow - what a story! Please thank your sister again for sharing.

Anonymous said...

I'm glad your sister stood up to the school system. Alot of the school systems in the hampton roads area are like that. I live in Suffolk and run into the same problems. I'm still struggling to get an IEP for my bipolar daughter.

Accidental Expert said...

Your sister is a very smart women. Personally, I never go into any IEP meeting without our advocate present. She is a wonderful diplomat and extremely knowledgeable of the law. At our last meeting, she told me that everyone in her office always take another advocate with them.

In our state, many organizations provide advocates free of charge for children with disabilities, which is a Godsend to those who can't afford to hire someone privately.

What they did to your nephew was wrong on so many levels. I'm sure they came to the decision to not expel. They were probably scared to death that your sister would file a complaint -- which she would be totally justified in doing.

Warrior MAMA said...

I am overwhelmed everyday by the magnitude we parents have undertaken in rasing children with special needs.

Just an FYI - in the state of Ohio, if your public school can not meet your child's IEP for the diagnisis of Autism. You are entitled to a $20,000 Autism scholarship fund for educational purposes.

:)
Lisa
www.warriormama.com

Anonymous said...

Thanks for sharing, it was helpful to see the process at work and I was impressed with the actions you took, way to go mom!

Wrye said...

Amazing story - and timely as we are in the process of getting an IEP for my daughter.

Her school has been remarkably unhelpful to date, and I'm hoping that will change.

Thank you thank you thank you for sharing!