Things I'm Learning From Megan - 1

I have to stop myself from saying - "She just said hello to you" - with some attitude when people ignore my daughter's cheerful "Hi".  She is teaching me that it doesn't matter how they react to her, that I should just do the kind thing, the nice thing, the loving thing, like her.

Civil Rights

My husband and I have spent the last several months putting together a complaint for the Office of Civil Rights regarding their treatment of our children and of us.  While discussing this today, as we wrap up and ready the complaint to send to the OCR I shared my feelings with my husband about why it is so important that we send this.  I believe this will probably be the introduction to our complaint, but regardless I hope others understand how important it is that we parents look at what is going on at school and that we demand that our districts meet our children's needs.

The law says that I must send my disabled child to school because EVERY child deserves and MUST get an education.  If you are going to insist that I send my child to school then the least you can do is avoid hurting her, and really don’t you believe educating her would be necessary?

If she must go to school then the district has every obligation to make sure that they do not abuse or harm her in any way.  Is it okay to say she “must” go to school and then abuse her?  Dragging her across blacktop like a bag of trash?  Or to cause her so much upset that she does not want to go to the classroom so that staff feels it is okay to drag her to the room as she screams and cries?  Or is it okay to be so incapable of meeting her needs and teaching her so that she becomes so frustrated and upset that she is hitting herself in the face and head hundreds of times during the school day?  Should we accept that this is an appropriate education for our child?  Should we have to enter into Due Process to prove that the district isn’t doing their job in educating our daughter?  And what about the children whose parents don’t know how they are being hurt at school because they implicitly trust the district to have their child’s best interests in mind?  As we did until our daughter was in fourth grade, we had been duped for years.  This is what CVUSD does to every child whose needs they don’t meet.  They dupe parents into believing that they have been educating their child with special needs.  This is a travesty, an injustice, ineptitude, and just one example of their complete lack of regard for the civil rights of children with disabilities.   

Choosing the Right School

Our school district has a policy that disallows what they call "school shopping".  Their opinion is that each of their school sites that offers certain programs all offer THE SAME program.  Of course we all know that this isn't true - otherwise why would parents prefer one school site over another?  This isn't to say that one is necessarily better than another (although that may be the case), but could it be that one site is better or more appropriate for a specific child?  I believe so.  I believe it is disingenuous for the district to state that they are all THE SAME and therefore transfers are not necessary.

When our oldest was returning to district after having gotten all he could from the county program for kids with severe emotional difficulties he wanted to attend a particular high school that was not our neighborhood high school.  It wasn't that our neighborhood high school was so bad, but he had made some enemies before going into the county program and he was nervous about how he would be welcomed back. The last time he had seen a group of about 6-8 boys was when they were chasing him and threatening to do him harm.  The district agreed that he would be transferred to the other school site as part of his IEP.   

My oldest daughter has had some difficulty in our neighborhood elementary school, mostly teasing and great difficulty making any friends.  She is quite a cute girl, she is sweet and a good friend once she is your friend, but she is also painfully shy, has a great deal of anxiety, and if she is not diagnosable as depressed, she is very close.  Her most recent psychological evaluation suggested that she is clinically depressed, but the district prefers to ignore that since she is not taking a specifically antidepressant medication - just a medication that is used for depression and anxiety.  I have actually avoided making a big deal out of the depression with the school because from everything we have seen and discussed with various professionals her depression is primarily driven by her anxiety - so working on the anxiety helps to diminish the depression so we have chosen to work on the cause of the depression rather than focusing on what seems to be a diagnosis of outcome rather than a primary diagnosis.   She has also been diagnosed with Partial Fetal Alcohol Syndrome - which tells us that she is a follower and that she is likely to follow anyone who accepts her down whatever rabbit hole they might lead her.  All kids are like this to a certain degree, but kids with pFAS are especially vulnerable to this.  

We had this particular child transferred in Jr High as the school in our area was in "Program Improvement" meaning they were not doing well at teaching the children that attended there.  We had allowed her to attend a "Program Improvement" school prior to this and had seen her skills slip - especially her oral language skills.  She went from a child who spoke mostly appropriately to a child who wouldn't use proper tenses and would use double negatives with regularity.  We had seen her propensity for following the crowd already.  

The school that she transferred to has been a wonderful opportunity for her.  Her language didn't really improve, but then it didn't get worse either.  She did however find a small group of caring and compassionate friends who although they don't invite her often or include her in all of their activities, are open to having her come along at times and treat her with caring and respect.  This group is among the popular kids which then helps her to be treated kindly by other kids at the school.  If someone is mean to her, the "cool kids" stand up for her, and so teasing and humiliation have been at a minimum.  I don't think there are many kids who get through Jr. High completely unscathed so this was really a great situation for her.

Now, as it is time to move on to High School, the IEP "team" refuses to send her to the High School that her current Jr. High feeds into.  They say she must return to her "home school".  This decision of course does not take into account her Generalized Anxiety Disorder, her Partial Fetal Alcohol Syndrome, or her Clinical Depression that is included in her most recent Neuropsychogical Evaluation even though I have not made a big deal out it with the district.  Their excuse is that the law states that when possible a child should be educated at the school of residence.  We all know that the law they are referring to was intended to PROTECT our children, and is in this case being used to imprison this child in a situation where she will once again be placed with the children who have previously humiliated and teased this child.  She will also have no group of friends who will stick up for her so she will hang out with whoever will tolerate her quirkiness, and she will once again be vulnerable to all manner of abuse since she will do whatever it takes to "have friends".  Wouldn't we all be willing to go outside of our comfort zone if otherwise we were left with no one to have lunch with or talk about our favorite shows or tars or whatever with?  Being lonely is a great motivator - most of us will do whatever it takes to avoid isolation.

Was the IEP process meant to force children to attend  the local school even when their psychological diagnoses would recommend against it?  Was it meant to allow a district to avoid taking responsibility for a child's well being?  Was it meant to set up a pretense that all schools are equal for all children?  I believe that emotional diagnoses are supposed to be considered as a part of the IEP process as well as educational diagnoses.  I also believe that if all of the schools programs were actually the same then parents wouldn't prefer one setting over others.

The way I am choosing to deal with this issue is to file for a 504 hearing.  It is similar to Due Process under IDEA but a 504 dispute is based on issues of disability and discrimination.  The beauty of this particular type of hearing is that the district cannot rely on the SELPA (a mega-district here in CA) to do all of the work for them and they may be more likely to carefully consider the case than rush to a hearing since the onus is on them.  I will write more as we get further into this and learn how the district chooses to respond.  

How to Save Time, Money, and Your Sanity at IEP Meetings

I have found that when our attorney comes to our IEP meetings there is a lot of time wasted.  We really try to have him come to as few as possible, but there are still times when we feel it is important for him to come.  I can just as easily tape the meeting, send him a copy, and let him listen without having to pay his travel time.  Additionally, if there are only a few minutes that he needs to hear I can cue that up for him or tell him where on the recording he needs to listen thus reducing our attorney fees significantly.  At first we had him come to all of the meetings, this was important so that he could get a feel for what we were dealing with and so he know where to go with our case.  He needed to know the players and their personalities just in case we had to go to Due Process.  Once I was able to catch on to what was important and what should or should not be said we felt safe with informing him of what occurred after the fact.

We also found that when he was coming the district tended to start meetings last and take many breaks.  That didn't happen at our most recent meeting, but when we were going to take a five minute break the district people all left for over 20 minutes.  If they can use up your attorney money in those meetings then you my not have enough left to fight them later on when it comes to going to Due Process.

Another way of wasting our money has been for the district people to read their reports to the whole group.  We do our best to avoid this.  For one thing it's insulting.  My daughter is the one with the learning handicaps, I and supposedly all of the district people in the room should have been capable of reading any reports and having the presenter highlight parts they feel are especially important.  Therefore it is important to ask for copies of their reports prior to any IEP meetings and then read them, write down questions, or problems you have with what you find.  They are supposed to give them to you once they are done and prior to the meeting but this rarely happens unless you request it in writing.  Even then, it often doesn't happen unless you write a reminder a few days before the meeting.  I also ask for copies of proposed goals prior to the meeting, and that way I don't feel under pressure to take in any important information at the meeting.  IEP meetings are pressure situations for us parents, and the less pressure we can feel, the better we will be able to participate in discussions.  I try to write down any questions or concerns I have ahead of the meeting.  I have also learned that some people will try to include written statements in the IEP that were prepared ahead of time and paint our child in an unfavorable light without our knowledge.  Our request for information ahead of time makes this kind of trick less likely to happen, but still we are careful to check the documentation when we sign so that nothing gets added in that we weren’t expecting.

I found this to be especially true at our first IEP meeting.  We had no time left to discuss goals or services so these were skimmed over and we had no input into what was written.  We have learned since then, we would simply call  for the meeting to reconvene on another day so that we could properly finish, but as neophytes we went along with their program of stifling any input we may have had.

I am also learning to do lots of research on every topic to be discussed at the meeting coming up.  Our last meeting was about Speech and Placement.  So, I looked all over to learn as much as I could about what our experts were discussing - the diagnosis, her suggested therapy, what the district SLP had previously suggested, looking for suggested goals online.  Everything I could find.  I went on the ASHA (American Speech and Hearing Association) web site.  I found a web site called Apraxia-Kids (my daughter's diagnosis) and I became as much of an expert as I could on her issues and how it is recommended that therapists work with kids like her.  I also went on the OAH (Office of Administrative Hearings) website to see how they have come down on cases similar to my daughter's.  Come to find that most parents are trying to get their kids into a lower level of care when they have my daughter's issues, and here we are trying to get her into a more restrictive environment.  What this tells me, is that our district is going in the opposite direction of how the judges come down most of the time and so we have a pretty good chance of winning if we go to Due Process.  I may not need all of this information now, but it gives me a sense of power going into the room that I have the judges on my side.  I am more confident and can argue more persuasively on my daughter's behalf.  I also believe that if I know what I'm talking about and have research to back me up, the district is less likely to push things to Due Process since they know I am more likely to win if I know what I am talking about.

The only problem with research is that there is often research that says otherwise too.  You want to try to know what they will have backing up what they say.  You want to check out where the preponderance of the research leads.  If there is only one research project that says X will work and you find 25 that say Y will work, you want to know this.  Then you should not be suggesting X and if they suggest X you can say, yes but there is only one project that supports your suggestions and 25 that back up my recommendation.

I don't know how people who work full time can get all of this done, but if you can't do it maybe you can get a friend or family member to help you.  Once you find one research study you can find more by looking at their footnotes.  And on and on.  Thanks to the internet we can do a lot more of this from home than we used to, we often have to test different search words and different search engines to find what will work best for us.  Finding professional organizations is great too, since they will generally include information about the latest research and about ethical guidelines that can help us in our quest for appropriate services.

"Forewarned is forearmed" is something my mom used to tell me.  Knowing what is coming, and using that knowledge to gain more knowledge is the only way to win the battles we face in getting our kids what they need from their education.