Monday, November 15, 2010

Delay Tactics Part II

These delay tactics become even more maddening when you consider the fact that our district personnel gets trained by special education law firms in how to do this, and how much districts pay to learn this information.  This most recent training cost the district about $200 per person to register, and our district sent at least one person to the training, probably two.  Then I'm told the building charged the usual rate of $600 for the room for one day, the same rate they would charge any other group to use it.  It's interesting though they used the WESELPA office for the training, and the WESELPA charged for it and paid for it, so they charged themselves.  The WESELPA also put out snacks and both hot and cold drinks as well as paying for a catered lunch.  All of this was done at the tax payers expense.  So, not only do we pay for our district personnel to go to these things, we pay for them to have snacks and lunch, and we pay for them to use the building that we paid for in the first place.

Now, if you or I want to rent the room there for the day and give a training on something helpful to our students we would have to pay about $600 for the room.  And that wouldn't include hot and cold drinks and a catered lunch.  So how is it, when FF&F has a training at the WESELPA, the room is paid for by the WESELPA?  Shouldn't FF&F be paying for the room?  And how do snacks and lunch get included?  And then our districts pick up the tab for the training.  Our districts are funded by us, the building is owned by us, the people going to that training are paid by us, and all to learn how not to give the services and education our children are entitled to, and that we are entitled to their receiving!  I could see why WESELPA would pick up the tab for the room if FF&F was giving the training for free, but when they are charging the districts to come that seems a bit unethical on the part of the WESELPA and FF&F.

This is just one way the WESELPA plays around with finances from my understanding.  There is so much to look into here, but although they are subject to the Brown Act and are supposed to respond to letters requesting information as a part of the Public Records Act, they don't.  Last spring I requested information on agreements between the WESELPA and different families (with names redacted) but was denied a single record.  I was told this information is confidential and therefore they cannot share it.  Mind you, it is not the parents that request this confidentiality, it is the WESELPA.  They don't want the other parents to find out what they have given to those who have gone to mediation or resolution sessions.  When we signed our mediation agreement we were told that if we shared what we got in our mediation, the district could pull out of the agreement.  In whose best interest is this?  As a parent I want other parents to know what I have won, and i want to know what other parents have won.  That way I have an idea of what and how far to take bargaining.  If someone else's child gets services that mine should rightfully receive I want to know about it.  I don't want my child to be left without only because I'm not a very good negotiator.  All children in similar circumstances should receive similar services.

Another interesting bit of this records rule that the WESELPA adheres to, is that they put a version of the agreements on the internet.  It is a washed out version, because they take this information to the Superintendent's Council, and it seems they don't want to be completely forthcoming with the Superintendents.  But one can look and get some general idea of what is being given by looking at old Superintendent's Council agendas.  I was looking for more in depth information than what is shared on the internet, but if it is so confidential, why is any of it put on the internet on a regular basis?  That doesn't seem to be as confidential as confidential implies.

A friend just told me today that she had called for an emergency IEP meeting, and in response the Vice Principal at her child's school called her into the office and asked if they could just put off the entire meeting for now and bump up the child's Triannual early.  Now, this child's Triannual isn't even due until May, so that's a large bump.  The reason for the request for an emergency IEP is that the child is regressing and exhibiting new behaviors brought on by the current school environment, does putting this off for a couple of months make ANY sense?  The child's aide is sitting by as another child bullies him, along with another aid and a teacher, but thanks to the FF&F training, the school is doing just what they were taught to do at that conference. Suggest evaluations when a parent requests an IEP.  Slow it down.  Throw the other team off their pace.  Just like you see professional basketball teams do when they other team is ahead of them and moving at a pace they can't keep up with.  The difference is, that is a game, our childrens' education is not.   

Thursday, November 11, 2010

Delay Tactics

I have learned over the years that the number one tactic used by the school district is delay tactics.  They have so many ways of doing this that seem legitimate but aren't that it would be impossible to name them all.  I will put down the ones I've encountered or heard about and I hope that those who read this will add to them with what you've faced.

The primary way this is done is to avoid telling you the rules.  They don't have to live up to time lines if what you have not made requests in writing.  So, we must put every request in writing, from evaluation for special education or for speech therapy or whatever issue concerns you.  It doesn't have to be fancy, just a little handwritten note will do, though I do suggest dating it and making a copy before turning it over to the district to be sure that you have proof of your request.

Secondly, if you are coming up on an IEP I have heard, "Why don't we just wait for the regular IEP date?"  We don't wait because we don't need to delay anything any longer than it already has been delayed.  If we are talking the difference of a week, we might wait, but a month?  No waiting, let's have a meeting. 

Another tactic would be to spread the IEP out - not have answers so have to meet again in a month and in the meantime, nothing happens.  Then deciding an evaluation is needed, so another 60 days goes by, and on and on.  Unnecessary evaluations are often a delaying tactic, make sure they explain why an evaluation is necessary, who should do it, and when.  Watch the time-lines, they will use them if they can to delay, most often scheduling meetings at the end of a legal time-line rather than earlier, if they can.

We asked for an evaluation for assistive technology, a speech device, and after the initial time period was done, they told us they had evaluated for one device, but now they needed to evaluate for another, this went on for a year, all the while we were being told it was important not to hurry the process since she needed to get just the right device.  We finally went out and got an outside expert to evaluate and she was able to do the evaluation in a couple of hours.  Still the district had another idea for another device, thus delaying everything by another 6 weeks since we couldn't just choose the device without the entire team getting together again, and that took 30 days to organize.  Once the district received the device we had to wait another three weeks for staff to be trained on the device.  This kind of delay cost our daughter over a year and a half before she got the device.  They were already late at even looking into a communication device, using the excuse that she wasn't using PECS, when in fact she finds the device interesting, but finds PECS boring.  By the time she got the device (thanks to all the delays) it was already outdated for her.  Then when we told them we had purchased an iPad and wanted them to get one for her for at school, the response was, "we need to do another evaluation".  Pretty rich! 

Most recently, our district has told us they cannot discuss placement for when my daughter returns from Home and Hospital instruction until she returns, which makes no sense.  For one thing, she is out on HHI because the school keeps messing around and she doesn't get what she needs at school and in fact they do what they do so badly that she actually develops behaviors and learns almost nothing useful at school.  We asked the doctor to to put her on HHI so we could find the right school and then request that she be placed there, now they say they can't discuss it until she comes back.  So we get a doctor's note, but they want another note - they don't feel we got the note from the right doctor.  These are all delay tactics.  They don't want to talk about placement because they know they are going to have to pay for her to go to a Non-public school because they don't know what they are doing.  It was so gratifying to go to the doctor today to get the second note and have her comment on how much better my daughter's behaviors are now that she hasn't been in school for a while.  She very happily wrote whatever we needed on our note to the school.    

A noted school district attorney group, Fagen, Freidman, and Fulfrost is known for their trainings, one of which is on how to avoid doing what the district is supposed to do "legally".  I correspond with a woman who went to one of their "trainings" in which they belittled parents by using nasty little nicknames such as Mr. Suesalot and Mrs. Evalstoomuch that sort of thing.  The entire training was on how to delay within the law.  So, if it feels like your district is just trying to delay - don't be surprised, they probably are.  They just try to avoid until the child is out of school.  They've probably been trained by attorneys on how to do it.  No wonder so many people have such bad impressions of attorneys.  The only way to deal with this sort of thing is to call it out.  You can call it out directly and see if they decide to stop, you can file a compliance complaint, or you can file for due process.  Even though they are trained to delay 'within the law', it really isn't within the law.  They get away with this because they can and we let them, not because they are right in doing it.  If you take them to court they aren't very likely to be able to keep delaying - because that isn't what education is about.  

Should the public school pay for a private tutor? Part 2 - National special education

Should the public school pay for a private tutor? Part 2 - National special education

This was an excellent post, with more to come. I highly recommend it to anyone who is starting out in advocating for your child. Or for anyone facing adversity in getting your child's needs met through the school district. If you don't end up facing unethical school personnel, great!  If you do, you will know what is happening, and you will have some ways to deal with the situations that keep your child from getting the education they deserve.

We've have recently changed our methods, and this post explains our current methods and why we ended up here very clearly.

Monday, November 8, 2010

Check, Check, and Recheck (the paperwork that is)

We had some issues around our last IEP meeting - specifically the district had a "pre-IEP meeting" which isn't necessarily a problem, but in this instance it probably was.  Especially since we know they had one before our last Triannual IEP meeting and made some pretty significant changes to what the district personnel was going to recommend.  We saw a report from before the meeting that suggested she maintain her current speech and then another report dated two days later (right after the meeting) that recommended a decrease in services by 75%.

This time our lawyer sent a letter and confronted the situation and they swore up and down they were allowed to do what they were doing, except that they were discussing current levels and that was supposed to be discussed with us, the parents, there.  They were also probably discussing placement since that was what the meeting was about - though they deny it.  They also deny that they took any notes or received any reports over a two hour meeting.  The worst offense was probably discussing how to change reports or how to present information in a way that makes it sound like things are other than they are.  This whole thing seemed pretty fishy to us given that we knew what they had done at the last meeting.  Does that sound fishy to you?  It sure did to us.  They also deny that they generated anything in writing or electronically (like e-mail) though we were told that there was an e-mail sent out.  
So, I requested all paperwork for the last eight months, and amazingly, there was only one e-mail in the whole pile of paperwork - it was from me to them - and I can guarantee I sent and received at least 50 e-mails in the last eight months. There were no notes about phone calls or pre-meeting notes, nothing.  Also strangely absent were Megan's behavioral evaluations.  So I started looking at what I already had, and I had not noticed that I had two copies of the report dated 2/28/2010.  Under summary and recommendations there were two different sets of writing.  The one said that the aide working with my daughter was not sufficient, that she should be replaced with a person who had been trained by the ABA company.  The second basically said everything was just fine.  Then, in June, the next report (which was not included in the paperwork but should legally have been included) said again that the company's aide should be in the classroom since the classroom aide was not getting the job done.

Doesn't this make you wonder what else may have been changed without our knowledge to be more district friendly?  Doesn't it also make you wonder what else is missing from our records since those reports and almost all e-mail that I KNOW of is messing?

I'm constantly learning about things that I need to be checking more often, and now, paperwork is on that list.  I suppose it would be wise to request updated paperwork every 6-12 months, just to keep up on what is in the file.  It will also be vital to me that I check everything handed out at the IEP against reports I have been given previously.  Apparently you never know when things will be changed.  Check, check, and recheck. 

Saturday, October 23, 2010

Sample Questions For an IEP

We had some issues with our last speech offer.  My daughter has severe speech issues, called apraxia of speech , which requires  a lot of speech therapy.  The recommended amount is from 30-60 minutes per day, five days per week, for someone with her severity of the condition.  All therapy, at least at first should be individual.  Last spring it was recommended that she receive two thirty minute individual sessions, and one thirty minute group session.  Below are some of the questions I wrote down to ask at the IEP meeting in order to make the point that the SLP may not really be recommending what was needed.

How important is speech to education?
How do Speech-Writing-Reading tie together?
How do you determine how much time to spend with a child who has the need for speech therapy?
Is what you're recommending within the standards suggested by your professional guidelines?
What are those guidelines?
Do you have a copy of those recommendations available?
All I have been able to find in the literature (published by ASHA) is that children with apraxia should receive between three and five hours per week of individual speech therapy, but you have recommended only one hour of individual speech therapy, do you have any specific clinical justification for that offer?
You have never worked with Megan or evaluated her, how do you justify making ANY recommendations for her with so little knowledge of her?
In your report you state that "based on the assessment results, the structure and function of the speech mechanism does not appear to be adequate for speech production" yet therapists who have actually spent time with her and done a thorough evaluation have recommended that she be taught to speak, how do you explain that?
In addition, she is able to say many words, you even state this in your report, she is just not able to communicate effectively, so this seems to be contradictory. How do you explain this contradiction?

What types of speech therapy are recommended for apraxia?
ASHA (on their web site) recommends only individual, no group for apraxia, yet you recommend group therapy for Megan.
Is your recommendation based on what is recommended by the standards of your profession or is your recommendation based on what the school district is telling you to offer?
Does offering far less than the standard of care conflict with the ethical guidelines of your profession?

Also, in your report I see you state that you did a direct assessment, what direct assessment was that? 
I could find no report of any kind of actual test or assessment given in your report?
You report that Megan was "slow to engage", I have seen her be slow to engage with some people and engage rather quickly with others. 
Of course slow and quickly are rather subjective statements, do you remember what you considered "slow"?  Was this slow for a typical child?
Slow for a child with Down syndrome?
Slow for a child with autism?
Slow for a child with Down syndrome and autism?
You also report that she kept her body turned and did not readily engage in play.  Have you observed her to be the same with others?
Have you observed her to behave the same with people with whom she is familiar?

In your report you state that "her communication is disrupted by her non-compliant behavior and difficulty expressing her wants and needs in an effective way." p.4
BUT, on p.5 in the conclusions you do not mark the box that says "Student behavior during evaluation" would have been a factor that appears to have affected the results of this evaluation.  So, was her behavior a problem or was it not a problem?

You also write "Megan's progress in the classroom is limited by the inconsistency of her communication aids and by the lack of generalization to the classroom setting".  It sounds like you are saying that the communication aids were not kept up?
Who was supposed to have kept those communication aids in workable order? 
Didn't her IEP include goals for assistive communication?
Shouldn't the person who was working with her from the district been keeping her communication aids in working order?
If not them, then who?

The final paragraph of your report states that "Megan's behavior had been described as increasing in non-compliance since the beginning of this school year.  Most of her school day is spent dealing with her refusal to complete her school work.  This is seen as a decline from last year."
Who was responsible for helping Megan to manage her behavior?
Are we to assume that the disabled child who has a condition (autism) that results in the very behaviors which interfere with her ability to gain from her education environment was allowed to continue to have increased negative behaviors?
What was the district doing that you know of to manage those behaviors at school?
Who was ultimately responsible for changing the behavioral situation at school?
Why weren't those behaviors being addressed adequately so that Megan could learn in the educational environment?

I have in my possession two different reports for this particular speech and language evaluation.  One that I recieved two days before the other.  The first report dated 3/3/2010 recommends continuing her then current speech and language therapy at five hours per week of individual therapy and no group therapy.  The second report, dated 3/5/2010 is the one that was discussed at the IEP meetings on 3/7/10 and 3/15/10.  It recommended no specific amount of speech therapy but it did recommend small group speech.  In the IEP meetings the offer for speech therapy was one hour of individual therapy and one half hour of group speech therapy.What changed between 3/3/10 and 3/5/10?  I was told that there was a "pre-IEP meeting on 3/4/10, is that what changed your recommendation?

IDEA states "The parents of a child with a disability are expected to be equal participants along with school personnel, in developing, reviewing, and revising the child's IEP. This is an active role in which the parents (1) participate in the discussion about the child's need for special education and related services, and (2) join with the other participants in deciding what services the agency will provide to the child."

In order for parents to take an active role in the IEP they must first be invited to the meeting.  We were not invited to a meeting on 3/4/2010.  In order to convene a meeting without the parents in attendance the district must, by law, have made every attempt to include the parents and the district must be able to prove that they were unable to convince the parents that they should attend.

In a due process case in Ohio, the hearing officer explained the importance of the IEP meetings, "The IEP meeting is supposed to serve as a communication vehicle between parents and school personnel, and is supposed to enable both sides, as equal participants, to jointly decide upon what the child's needs are, what will be provided, and what the anticipated outcomes may be."   When meetings are held secretly that is in direct contrast to the law as set in IDEA.  We were not allowed to communicate, be an equal participant, decide with the district what our child's needs were, and what the anticipated outcome would be of one set of therapies versus the other.

In fact, this "pre-IEP" meeting and it's work product denied our daughter FAPE just by the fact that it took place according to IDEA.  Was there a "pre-IEP" meeting before today's meeting?  What was decided at that meeting?  If there was, would you admit it?  Would you feel comfortable testifying to that under oath in court?  Because it could come down to that, and I do have the proof I have told you about, and in fact my attorney is holding that proof at his office.

 For feeding/swallowing (which I was told for years is NOT a school issue) -

Does ASHA offer guidelines as to whether swallowing (feeding) fits into an educational setting?

Can you show me that in writing?

I believe that part of why Megan has such difficulty with muscle tone in her mouth is because she cannot eat.   

So, since the school should have been helping her with eating issues, this would have laid some groundwork for learning to speak.  But since the district straight out lied to us about the school's role in feeding/swallowing therapy the district in fact made it more difficult for my daughter to learn to speak when she was younger and more open to learning both feeding and speaking.

This district seems to think that she should be able to overcome her apraxia in the same time-line of any other child with apraxia but in reality she is receiving the therapy so much later than she should have that it will take significantly longer for her to gain the skills necessary to speak.  Who but the agency responsible for her only receiving those services so late should take the responsibility for that and commit to the long term fix that is now needed?  I was aware of her needs, advocated for those needs, and was told "no" over and over.  I did what I knew then to do in order to force the issue, but was faced with lies and deception from the district.  I thought the district personnel were being honest with me about their plan, when in fact the plan was to avoid giving my daughter necessary speech and language services. Now that I know what was going on I expect the district to do the right thing and make up for their egregious failings with my child.  The district caused this problem to become this big and the district needs to live with how big it now is and make it right.  Expecting her parents to fix the problems created by the district is basically an attempt to steal from the children (and their parents) that you, the district are charged to educate.

I am not necessarily comfortable with being as direct as these questions are, that is why I wrote them down.  It is much easier for me to be direct when I have a script in front of me.  Also, I may or may not ask all of the questions I have prepared.  It really depends on the answers.  In this particular case the SLP who had done the evaluation the year before was no longer there so I used very few of my prepared questions.  However, I was so much more prepared than I would have been otherwise that I was still able to ask difficult questions and I could focus on their answers.

I also prepared questions for the general classroom.  I asked these questions of the Neuro-psychologist who observed her in the classroom setting.

How much of the time that you were in the classroom did Megan spend working with the
 teacher and or the aide?
Did they say anything that made you believe that the day you visited was significantly 
different from other days at school?
Was there anything that made you believe that there was anything unusual about the 
day you observed?  
So, if this is the usual school day for Megan it would be safe to assume that she might 
get about 1/2 hour of actual instruction per six hour day of school?
This would then add up to about 16 days of instruction per year.  Would this in your 
professional opinion, be FAPE?
What is going on in the classroom that is keeping Megan from learning?
Why is it, in your professional opinion, that she is having these behaviors at school, 
when these behaviors have been severely reduced in other locations?  
Such as dance class, ot, home, physical therapy.
How can we increase the amount of learning time for Megan to benefit from her education?
What specifically does she need that she is not getting in the classroom?
Last year the district promised to send her one to one aid for training with the ABA 
company, is there a reason that hasn't been done?  Why wasn't this done?  
Wouldn't it have made sense to do this while she was out and in HHI? 
Again, I did not ask all of these questions, but having them ready prepared me for a very difficult 
meeting.  I recommend having this sort of thing ready, even if you don't use any of it, it will 
prepare you to keep the meeting focused where you want the focus to be.  

Friday, October 22, 2010

Excuses Not to Teach My Child

 I've heard them all.  Anyone with children in the lower functioning ranges or with behaviors have probably heard them all.  "It’s not our fault we can’t teach your child.  They don’t cooperate."  or "Your child is too low functioning, we need to put them in the life skills classes." or some other stupid excuse.  Okay, life skills are important, but when do we make that determination?  I believe that there are some life skills that should be taught early in the schools, but in special circumstances.  If your child doesn't have the necessary grasp to pull their pants on and off to use the bathroom then having a school OT help is appropriate.  If they need to learn how to button or tie their shoes, then fine, the school should intervene.  Going shopping, sitting at a table and eating, ordering from a fast food menu?  These are all things we as parents are equipped to teach our own children.  These are things we do every day with our kids and don't need the school jumping in to teach.  In the past families didn't take their kids with special needs out in public so the school HAD to teach these things, but that isn't the case anymore.  I believe going out in public and participating in a special activity from time to time can be useful, our kids need the opportunity to do some of these things away from us at times, but that should not be in the core curriculum week after week.     

And, hey, I doubt you, like my husband and I hoped we would have a child with special needs.  We even wished less for a child with a dual diagnosis such as our daughter who has Down Syndrome and Autism, with a lot of the other assorted diagnoses that go with each of those diagnoses.  But I’m sure there are other things you would have wished even less for, so consider this.  You didn’t go to school, plan a career as an educator, decide you would get further education as a special education educator an administrator or a therapist that is employed by the school district to give special needs children assistance, and then decide to say “I can’t do that” or “I don’t know the laws” or “That’s not my job” or any other such nonsense that people in this profession so often use to abdicate their responsibility and not give our kids what they need.

They, unlike you, chose this career.  They have a responsibility to know the laws, know your child’s needs, know what needs to be done to help your child, and then get it done.  They get PAID to do this job.  Of course, as the parent you are in a position in which you must learn many of these same things, but don’t let those who are paid to do a job try to make you feel guilty for expecting them to do that job.  Either they do the job or they get out and stop taking the paycheck.  Maybe they don’t get the biggest paycheck in the world, but they chose this job.  They knew going in that it would not make them rich and if they didn’t they aren't very bright.  Everyone knows that teaching is not the way to get financially wealthy. 

When I took classes back in college it was always clear that teachers were not well paid, but there were other benefits that made many people choose it anyway.  The hours work well for mothers because they can work and have children and be off the same days and close to the same hours in the day.  There would be take home work but you didn’t have to worry about your kid being in daycare for hours everyday.  You get summers, Christmas, and Spring break off – to pursue interests, to spend time with your family, to get a second job, whatever.  Most importantly, you get to shape little minds and make a difference in the world, one of your students may become president of the U.S. due in part to your encouragement and dedication.  In special education you may be the one who break through to a child who cannot speak and helps them to communicate for the first time!  Whatever the reasons, people chose this profession for their own reasons, but it can’t have been to get rich because we all know educators don’t get paid THAT well.

SO, if they CHOSE the career, they need to take responsibility for that choice and do the best job they can with the restrictions they must deal with.  We have dealt with an administrator, a principal who uses the cop-out that this is her first year as a principal as an excuse for not knowing the special education laws.  I seriously doubt she went into her interview for the position and stated that she expected to be excused for not knowing the basics of special education – she probably wouldn’t have been hired for the position if she had.  She had been a teacher and a vice-principal before taking this position so total ignorance would seem impossible.  I think her “ignorance” is a choice to mask what is actually a discriminatory attitude toward all persons with disabilities.  If you think this attitude does not exist you only need to look to the need for laws like the A.D.A. (American’s with Disabilities Act) which is an entire set of laws designed solely because there are so many in our society who believe that the disabled are not deserving of the same rights as the rest of us.

We must hold these people accountable for the choices they make without falling for the arguments that they are not capable of doing their jobs.  Plus, I must say, I rarely find teachers with this attitude, although there are some, it is more often those who are in administrative or the designated services positions, who use these excuses, and those positions pay more.   

I will write another post on what some of the many areas are that the schools are supposed to help with.  When I was new to this I really didn't know how much the school is responsible for, but they do.  If you're like me you'll be surprised at how much they don't tell you they are responsible for!   

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.

Thursday, October 21, 2010

Some Quick APRAXIA of Speech Information

Apraxia is, put simply, the inability of a person to form words correctly.  The words don't come out in an intelligible manner.  The wiring in the brain gets mixed up and what the person means to say and what they actually do say aren't the same, the wiring gets crossed somehow.  It's a lot like CAPD but in the reverse order.  There may be lots of noise but little to nothing of any substance coming from your child's mouth.  I have two children with apraxia - our son has mostly overcome his apraxia, but we got him a diagnosis and treatment early.  Instead of Pizza, he would say "PASTIS".  To him it was the right word and he was very frustrated that we didn't understand him.  There were many others, but that one has always stood out, I guess because his favorite food is pizza!  Our daughter is 12, and she is finally getting appropriate treatment, and we are seeing progress, just three weeks into the right therapy. 

I just learned of a group called CASANA (Childhood Apraxia of Speech Association of North America).  They have a blog here on Blogspot, Apraxia - KIDS - Every Child Deserves a Voice.  They a lot of information about apraxia and research and treatment.  They also have a Facebook page with the same name.  If your child has apraxia I highly recommend looking at these spots to get more information and to be ready to ask for what your child needs  with some research notes to back up your request.

Sunday, October 17, 2010

Up For Down Buddy Walk

Today was our first attempt at participating in a Buddy Walk.  Ours is a pretty small group but we managed to stop traffic for a quite a while anyway!  It was fun to meet some people I hadn't met before, run into friends we hadn't seen for a while, and see face to face some of my Facebook friends that I'd never met in person or only occasionally seen in person in the past. Our younger son doesn't have Down syndrome but is in a special education class and I just today learned that one of his aides has a son with Down syndrome.  It really is a small world, our special education bunch!

When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug.  It was so absolutely sweet and unexpected!  She sees that she is looking into a mirror of sorts and she enjoys that.  I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them.  I saw today that she feels the same.

Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves.  It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability.  The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure.  That's what is so great about these kinds of events - the lack of pressure to do everything right.  They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes.  It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.

I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now.  We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.

Just one final word, our walk was done in memory of James Bond Jennings.  He was a young man in the group who died last year of pneumonia.  He had lost his mother to cancer just a few years before.  She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts.  This is quite a family.  Grady with others put together a golf tournament to benefit the group in memory of his wife and son.  James' friends each shared something that they loved/miss about James and let go a balloon as they shared.  It was absolutely touching and brings a tear to my eyes even now.  I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.

Saturday, October 16, 2010


We had our latest IEP this last Tuesday.  It was another example of how our district will use any means they can think of to avoid doing the right thing.  Our daughter has been out of school for several months now, the last couple due to the fact that the district has not done what was promised in our last IEP and so there is no one who is trained to work as an aide for our daughter.  They were supposed to have sent her aid to training with the ABA company, but never did.  I have confirmed this with the ABA company but the district and the SELPA program specialist "didn't know" if the training had occurred.  When they act as if they don't know rather than becoming indignant you can be pretty sure it didn't happen.  But we didn't confront that part of things because it might make us look like shrews when we go to Due Process, if we have to go that far.  The truth is they probably never intended to send her for the training and didn't expect that I would check into it.  I think this because they are just used to pulling the wool over the eyes of unsuspecting parents.  You would think by now they would know we are no longer in that category but then they are champions at underestimation - they underestimate our kids and they underestimate us.  It helps them to underestimate our kids because then they can offer fewer services and if we think they are right in their underestimation then we agree to less than what our kids need.  Underestimating us however, is foolish, because then they don't plan for the responses we are capable of and do offer.  This can be to our benefit however, since throwing them off their game can cause them to make mistakes.

We need to keep in mind that they will try to underestimate our kids, at least those kids who appear to be lower functioning.  They believe this gives them the rationale (which we know is misguided) they need to offer little to nothing, since they don't want to "waste" their money on educating our lower functioning kids, they would rather use that money to litigate against the lower functioning kids than actually trying to give them any educational benefit.  If only I could go back to the days of believing their underestimation of my daughter, but never again.  Never again will they be able to convince me that offering her nothing is logical.  They have to try to educate our kids before they determine it won't work.  And they have to try with more than one type of modality, many times the reason our kids haven't learned is because no one has figured out how to reach them.  It may take effort to figure out what works with our individual kids, but, believe me it is worth the effort.

Monday, October 11, 2010

Blaming the Victim

A recent article in the Special Ed Examiner

refers to a case I have known about for some time. Sadly, this hasn't raised the hackles of citizens everywhere! You must read the story of a teen with Cerebral Palsy who was molested by school district staff, an aide in her classroom who has continued to be in the classroom after parent complaints and even after this situation in which another aide reported seeing the man lifting the girls shirt and undershirt up to her neck in order do ogle her breasts. We don't know if more would have happened or did happen on other occasions but he has stayed in the classroom. The district has chosen to defend his actions by filing a suit against the parents for allowing her to go to school where they put her in danger. How is this when we must send our children to school or face jail time ourselves for allowing them or encouraging them to be truant? This is just proof of how insane the system has become, at least in one school district. And I have to wonder, is it because the child has a disability that we don't see a community up in arms and getting rid of the superintendent and school board that is mounting such a heinous defense for their inaction? I would hope that no child would be allowed to endure this kind of humiliation yet one of the children most needing of our protection continues to be assaulted, only this time in the courts.

Saturday, October 9, 2010

When They Say... By Kathy Everett

This is a piece that was written to help parents counter some of the negatives we are likely to encounter in IEP meetings. It's so great I thought it best to include the article in it's entirety.I like to read this before I enter meetings just to keep myself prepared.

When “They” Say…
By Kathy Everett, of Kathy Everett Consulting, Alpharetta, GA

Published in Down Syndrome News, the Newsletter of the National Down Syndrome Congress, Vol. 23, 2010 #2


Those three little letters instill fear in the hearts of many parents who have a child with a disability. Others have no idea what they mean.

In the past 22 years, I have attended hundreds of IEP (Individual Education Program) meetings. Some were for my own daughter, Jennifer. Sometimes, I provided a hand to hold or a friendly face in the crowd for other parents who needed it. The process of creating and IEP can be long and confrontational, short and cooperative---or anything in between. The key is for parents to know what to say when “they” say____________ (fill in the blank).

In my journey, I have learned many things that I share with other parents to help them on their journey. When a school member says something you disagree with for your child, your response is key. Here are some of the most common comments said at IEP meetings and what you can say to counter them.

1) We’ve never done that before.
Well, let’s see how we can figure out how to do it.

2) She will get more attention in a small group setting.
The average self-contained class has eight students all with significant special needs while the general education classroom has an average if 20 students but statistically only one will have significant special needs.

3) Your child requires more attention than I can give in my class. I have 20 other students that need my attention.

I understand and it sounds like you do not have enough support in the class to help with all of your students. Then maybe a paraprofessional is necessary.


All students need to be challenged and you should not feel like you are the only one who can teach my child. I am sure there are several other children who would love to help out my child. We all know that helping someone else learn reinforces what is being taught. Peer tutoring is a wonderful opportunity for everyone in the class.

4) He needs to be with other kids that are like him. He will feel always left out and unable to really compete with his peers.

My child needs to be around age-appropriate peers in real life situations to learn how to get along with others in the real world. Research shows that all children benefit from inclusive classrooms.

5) It isn’t fair to have a child in the class who is learning have to teach someone else. It isn’t their responsibility.

We all know that kids learn from kids. Kids build competency by teaching someone else because it reinforces the skills they are learning themselves.

6) She really needs adaptive PE (physical education; or art or music).

I understand my child has limitations; but she will benefit from access to the general curriculum, just like all of the other students do. And, in the case of PE (or art or music) just learning how to follow directions or changing into clothes is a skill my daughter needs in life.

7) They need to be in adaptive PE so they don’t get hurt.
Don’t you have any other children that ever get hurt? My child needs to learn how to play in social environments. What can I do to help you have the supports so that he can safely participate? Let’s work together to plan what supports will help him participate safely.

8) She is so far below grade level, she cannot even…
I understand my child can’t…. That is why we have differentiated instruction. The curriculum needs to be modified so that she can continue to progress and learn.

9) He is not at the level; of the other children.
I know he isn’t at the level of the other children. That is why he has an IEP. I don’t expect him to be at the same level of his peers, but I do expect us to use a modified curriculum where we can identify the supports that are necessary and helpful for him to learn.

10) We are concerned about her life and/or job skills. That is why she needs to be in this class.
I really appreciate your concern. There are many things I can replicate at home and I can teach my child. But I cannot recreate a high/middle/elementary school environment. My child needs to experience that just like any other child. I teach my child life skills. I take my child to the grocery store. I need her to learn how to be around other people.

In communication, one of the most important things to remember is to keep the conversation focused on your child and his needs. It’s what he needs, not what you want for him. It sounds simple, but the key is semantics. Always think about how you phrase the question or statement to encourage the response you want. I never ask if something can be done. I ask how it is going to happen. It is important to be knowledgeable and realistic about what your child can and cannot do. Know the law—but use it sparingly. Honestly, you and the educators want the same thing: for your child to learn in a healthy, caring environment. Sometimes, we just have differing philosophies of how to accomplish that. Good luck and remember and IEP is not carved in stone. It can be changed.

Kathy Everett is a certified teacher in both general education and special education who directs her own consulting business, Kathy Everett Consulting, to assist parents in navigating school systems. She also has a daughter with Down syndrome.

Kathy Everett Consulting Special Education Consulting 10960 Pinehigh Drive Alpharetta, GA 30022 (678) 620-6020; (678) 230-6985.

Workshops for Adults

Some workshops are definitely better than others. And they really are not for all of our kids. Some of them are awful, I won't name names since I can only remember the one I thought was awful and can't remember the name of the one I really liked. Our oldest foster daughter went into a workshop because she did not have the social skills to get and keep a job outside without support. Because of this we went and observed the three in our area, really only one was awful, one was okay and one was superior, but the best one was further away and would have required more involved transportation that our daughter was ready for.

As it turned out, I used to work with clients who had intellectual disabilities and so I knew a few people in the two workshops my daughter considered, and they were actually quite happy - even in the one I deemed awful. Their friends were happy too. Even though they are paid very poorly and it is not something I would EVER want to do, there is a good portion of the developmentally disabled population who gets a great deal of esteem and pride out of going to work in the workshop environment every day and feeling a sense of accomplishment.

Not all clients at the workshops stay inside though. Our foster daughter worked her way into a group that worked at a local university cleaning the tables and equipment at the student cafeteria. She was also in a group that cleaned outside businesses for a while. This was much more typical work and prepared her for getting a job outside without supervision.

Still, this is not to say that this is the environment for everyone. Our foster daughter was really underpaid, and because of her level of functioning she felt under appreciated because of the low pay. It deteriorated her self esteem to be paid such a low wage and to be working so hard for that wage. It came out to under $1 an hour - a travesty! I felt they took advantage of the clients in that regard, but remember this wasn't the higher quality workshop either.

She also had the chance to take classes at the workshop, these were life skills classes in money and basic math skills. She also took classes that were in preparation for taking classes at a community college. So workshops aren't just about adults sitting around doing repetitious work, although that is part of it and appropriate for some clients, certainly not the only thing they offer.

I don't relish the idea of my child going to work for low pay and doing repetitious work, but the truth is if she enjoys it and gets some pride out of it, I think it's great. If she can go out into the community with a job coach and get some esteem from that, great! If she can learn some job skills that she can take with her all the better. We are all drawn to others who are like us. And we find those people at work or at school when we are at different ages. My fear would be keeping my child at home, segregated and lonely. I must admit, I hope to move to Orange County though, so that my daughter can go into the workshop that coaches kids working at Disneyland, so she can work there just like her mom and her grandma before her! If not though, I'll give her what makes her as happy as I can.

Friday, October 1, 2010

CA State Bill 1317 - Truancy Bill


This bill provides a definition of a chronic truant. Provides that a parent or guardian of a pupil of 6 years of age or more who is in kindergarten or any of grades 1 to 8, inclusive, and who is subject to compulsory full-time education or to compulsory continuation education, whose child is a chronic truant, and has failed to supervise or encourage pupil attendance and has offered language accessible support services, is guilty of a misdemeanor.

So.......What we need to do is get the word out to parents about how to circumvent the issue. Things like putting your child in HHI (Home and Hospital Instruction). Kids with special needs who don't attend school have reason for not attending school that can easily be dealt with through getting a prescription for HHI and having an IEP to make this happen. A doctor must sign off on this and if a child's doctor won't I would simply change doctors. I have never had trouble getting a doctor to sign for HHI - I have a good relationship with my kids' doctors and they know I wouldn't ask for this without good reason, so it's always good to start with a good relationship with our kids' doctors. I know it isn't always as easy for people who are new to an area or if you are in an HMO but it can be done. The only time I had a doctor not sign for HHI was when he suggested it but felt my daughter's regular pediatrician should write the prescription because this doctor was at an urgent care and didn't have access to her records should any questions arise later. The kids I know with special needs who don't attend school miss due to frequent illness (compromised immune system? or congenital issues that cause them to be sick a lot, or frequent surgeries) or due to school phobia (a legitimate reason for HHI) or because the school environment exacerbates symptoms (like florescent lights that trigger seizures). I'm pretty sure there are other reasons, but this is a sample of ideas to help parents avoid the kind of mess this idiotic type of legislation can create.

A friend of mine went to an IEP with a family whose child went to a specialized program all year and then to school after. "Dad requested records and daughter had recorded eleven truancies. The school said 'oh our system isn't designed to take into account when a child is here partial days so that's why it recorded this way'. Then they said are you sure she wasn't absent at least x amount of days and tried to say most of these were legitimate. My friend said "Just imagine how a parent like this can be manipulated now that this law is passed. Sign this IEP or we will record those as truancies. Or they can imply it." And I believe that some unscrupulous school personnel would do this!

The good news was the district personnel admitted they did not have a way to handle this individualized situation and this meeting was recorded - I know the parent records all of their meetings as I do too. It's vital for just this sort of thing you might not even realize is going to come up! Their attempts to blame the deficiencies later would carry no weight in court because they had already admitted that their system was not able to properly keep track of absences in this particular situation. I would think though that the district might want to make their system capable of keeping track since they were not paid for the days they mistakenly recorded this child as absent, yet they were paying for the outside services regardless.

We had a similar situation with my daughter because she went to speech therapy in the morning and then went into school late every day, but we were protected because my daughter has behavior issues and the teacher and aide filled out a behavior sheet about her every day that she went to school. They would send it home in the afternoon or if a short day would hand me the behavior sheet the next day when I dropped her off. I had proof that she was there. Maybe the parents should set up some similar sort of safeguard if they know ahead of time that this could become an issue. Of course we almost never expect these things to be potential issues so we have to get the news out to parents that they should set up a plan ahead of time so they don't run into problems down the road.

I'm sure there are other ways around this, I don't know them because I can't think of every possible scenario where this could be a problem, but if you have creative ways to deal with this new law please post a comment.

Thursday, September 30, 2010

Who is Supposed to Be at the IEP Meeting?

Our district has always had a habit of avoiding doing what they are supposed to do for as long as possible. They know they will eventually have to do what the law says but if they can put it off it will save them money (they think!). One of the ways they have done this is by not inviting decision makers to the meeting.

We don’t often know who the decision makers are when we first begin the IEP process. As you go along you figure out who in your district needs to be there, but early on it’s often impossible to know. If you are looking at a change say between districts or from County schools to district or district to County schools there must be a representative from the place you hope to change to at the meeting or no change will happen. There must be someone at the meeting who can make the decision and not inviting them is the easiest way to avoid doing what you are asking for them to do.

When our daughter was in pre-school we decided we needed to change her placement. The school where she went first was about a 30 minute drive away. We were told she HAD to go to that particular school because she was non-ambulatory (she didn't walk until 3 years, 4 months. We agreed to that school originally because we believed this lie, and then when she could walk and we were told by her regional center case worker that she didn't like how the staff was treating our daughter we decided it was time to make a change.

I requested an IEP meeting and told them that we wanted to change her placement. We had a meeting, but no one from the new school came so we couldn't make the change. Another meeting was set - for 30 days later (the maximum allowed by law) and once again, whoever needed to be there wasn't there, so another meeting was scheduled, again, 30 days later. Again, the right people weren't there. At this point I said "Fine, but my daughter will not be attending school until you get this meeting set and we get the new placement worked out." They were able to get a meeting put together, with the right people, and get her placed before that 30 day time limit once they knew they would not be getting their paycheck for her unless they made a new placement happen.

This taught me a few of things. We can play hardball with them, especially when it comes to attendance before they legally have to attend school. Also, we often hear that our kids cost a lot of money but I have had at least one school do everything they could through four IEP meetings to keep her, so my bet is they get more money than it costs to provide the services they actually provide in most cases. If they are fighting to keep your kid, they are probably making a bundle on my child and I probably need to be looking at what they aren't doing that they should. My child should not be a money maker for the district - they should see her as a child to invest in, not as a cash cow.

Wednesday, September 29, 2010


BIG DISCLAIMER: I am not a doctor, I don't pretend to be a doctor, and I am not giving medical advice here. I am giving my opinion as one parent to another about how I consider psychiatric medications and how they may or may not be used on my child. I don't advocate FOR or AGAINST medications. This is a highly personal decision, but since I have some knowledge of these types of medications due to the fact that in my former life(before children) I worked in a psychiatric hospital with patients who suffered from a number of severe mental health issues so gained a bit of understanding of different types of medications used for psychiatric disorders so I make somewhat informed decisions about my child's medications. I don't know a lot about specific medications and i don't intend to try to explain how drugs interact or work on different parts of the brain or anything like that. That is what doctors are for, but having a working knowledge of the kinds of medications that are used and what those classifications means helps me to make more informed decisions about my daughter's medications than a lot of other people are able to make. This is just me sharing about how I think when I hear a doctor talking about which medications to prescribe for my child, and I think it might help if you don't ahve this sort of knowledge.

I was talking to a mom today who was sharing about her daughter with autism and ADD/ADHD having been medicated in the past and that she believes she may want to try medications again. I am not an anti-medication person, I medicate my daughter and although I wouldn't be so rude or presumptive as to tell others they should medicate, I also wouldn't tell others not to. A lot goes into that sort of a decision. What this mom shared though, shocked me! Not because I would expect her to know about classifications of drugs and what different drugs are intended to do, but having some experience working with psychiatric patients I have some limited knowledge of some psych medications and it seemed that her daughter had been given medications for symptoms she just did not have.

In the psych med world there are basic types of medications. Anti-anxiety or tranquilizers which are used for anxiety (no duh right?). Then there are anti- depressants which are for what else, depression. Some of the anti depressant medications are also used for anxiety disorders and for Obsessive Compulsive Disorder. There are mood stabilizers which are mostly for people who have mood swings, usually with Bipolar disorder. There are medications that are intentionally designed to help with both anxiety and depression, because those two so often go hand in hand and they are sometimes used for people with Bipolar disorder too. Then there are the big guns, anti-psychotic medications. These are really strong medications intended for use for people who have a condition called psychosis. Psychosis is a condition that is characterized by the person not being in touch with reality. People with psychosis see things that aren't there, hear things that aren't there, have thought disorders like paranoia or even odd thinking, an example I heard recently about a young man who shared that his hair was growing back in on his head (I have no idea why it was gone in the first place but it was) and he said that the hair coming back on his head was itching his brain. That is a thought disorder, it doesn't make any sense in our world that we consider "normal". A client I worked with at one time believed he was the "Ambassador from Mars", this is another type of thought disorder. In addition to these drugs are the medications generally given for ADD/ADHD which most often are stimulants, but at least one is a non-stimulant, it is called Strattera. They also use some blood pressure medications for anxiety and ADD/ADHD, the newest being Intuniv, which is a long acting form of a blood pressure medication that is given in doses much lower than are used for patients with high blood pressure.

So, this woman was telling me that she had hoped to get back into her daughter's former psychiatrist, but he didn't have any openings. She told me that her daughter had been on Risperdal (an anti-psychotic) and Abilify (a mood stabilizer/anti-psychotic). I don't know this woman's daughter but we have spoken several times before and this surprised me. I asked if her daughter was aggressive in the past. She said no. Was she self-injurious? Did she have extreme melt-downs in which she could have harmed herself? Did she hear voices or anything like that? She said no. All she had felt she needed the medications for was her ADD/ADHD, and she shared that really her daughter wasn't especially hyperactive, maybe impulsive but not hyper. So why would the doctor have put her on such a strong medication? The other thing that struck me was that the medications hadn't helped with her daughter's ADD/ADHD so she had stopped medicating her thinking that medication wouldn't help her child. The only reason she is going back to visit that idea is that the RC suddenly terminated her daughter's ABA when the child was out of school for summer break, so she also had no ABA funded by the school district and she was seeing her daughter regress and have behaviors she hadn't seen for a long time. She doesn't want to see her daughter forced into a more severe classroom that she needs because her therapies were abruptly ended so she is feeling a bit desperate.

So I'm thinking, "Isn't God good? He kept this child from going back to a doctor who was giving her medications for conditions she doesn't have and not giving her medications for the condition she does have!" Then I got to thinking back to my early college psychology classes when we were taught that autism was supposed to be "childhood schizophrenia". We aren't completely sure about what autism is and what it isn't but we can be very sure that it isn't any kind of schizophrenia, it is completely different.

So, when a psychiatrist starts naming off medications for MY kid I want to know what kind of medication they are talking about. Are they talking about prescribing an anti-depressant, an anti-anxiety, an anti-psychotic medication, or are they talking about prescribing a stimulant or non-stimulant medication to help with ADD/ADHD symptoms? If I go in and tell the doctor my child is having sinus problems and they want to put a cast on her arm I know something is amiss. It's the same if I say my child seems to have or has been diagnosed with ADD/ADHD and they want to give her an anti-psychotic medication.

Autism is not a psychotic disorder. There are no medications that have been studied and found useful for autism - although there are medications that are used for different symptoms of autism. Now, kids with autism can have all types of psychiatric problems and many do, but we can't give them a pill and have the autism get all better. Many kids with autism also have ADD/ADHD. Another problem that is often concurrent with autism is anxiety. OCD (Obsessive-Compulsive disorder) is highly correlated, and kids with autism are more likely to get Tourette's Syndrome than in the typical crowd. So our kids may benefit from medications for some or many of these issues. Heck, we even fostered one beautiful child who had both autism and schizophrenia. This is very rare, but once she was given anti-psychotic medication she started sleeping because she didn't have the voices in her head keeping her awake all night. For her, anti-psychotic medication was beneficial, in fact it was nearly a miracle to watch her come out of her psychosis and begin to enjoy life, but then her father had been diagnosed with schizophrenia so she came by it genetically and she wasn't being medicated inappropriately. Occasionally kids who are very aggressive can benefit from anti-psychotic medication, even then I would want to try other medications first, medications that have less side effects and less possibility of long term effects. We need to know why a doctor is giving our children the medications they are suggesting. We need to know they aren't living in the dark ages of calling autism "childhood schizophrenia" and medicating for a condition that does not exist.

I always ask questions like what classification of medication is that? Why do you think that particular medication would be better than another for my child? What side effects should I look for? Which symptoms is that particular medication supposed to help with? The answers give me an idea of what the doctor is thinking. Are they thinking my child has an attention problem or do they think my child is not based in reality? I know which it is, do they? I also ask my pharmacist a lot of questions, but then I have a great pharmacist, not everyone is so lucky, but it's great if you can find one who will answer your questions and go over side effects with you.

I hope I'm not being too "preachy" here. I just had not realized how blessed I am to have the information I have and how unfortunate it is that some doctors will just make so many bad decisions for parents who aren't in the know. If you aren't sure about a medication that is prescribed for your child, ask the doctor about it, if they get defensive, find another doctor. Look on the internet and find out what kind of medication your child is prescribed, get to know what side effects to look for, if you don't get a list of them with the medication, go online and Google (or Bing or Ping or whatever) the name of the medication and side effects (i.e. Prozac side effects). Ask therapists since they are trained in medications even though they don't prescribe. Ask your child's other doctors, their pediatrician or immunologist if you are unsure about what to do. Get multiple intelligences going. Being nosy could be the very best thing when it comes to medications for our kids with autism.

Finally: If you are interested in looking at more information about medications I have included a medication gadget to your right. I'm sure I will add additional links as time permits but this are some of the best links I could find right off the bat.

EXAMPLE: Letter Re: Prior Written Notice

This isn't like the sample letters I have written, it is more an idea of how to go with this sort of letter. Since a response to a letter of Prior Written Notice could be about so many different services or assessments, etc. it becomes apparent why I have chosen to use our letter as an example rather than offering a sample. I believe that if one goes with a generic sort of letter in this case, one will get a generic sort of response which is not at all meaningful or helpful. Just a warning - my sarcastic sense of humor comes through in this particular post, but not in the meat and potatoes of the letter. Our director of special education has a name so close I couldn't help but use the pseudonym Dr. Do-Little. =)

City, State, Zip
September 29, 2010

Dr. Do-Little
Director of Special Education
Unified School District
City, State, Zip

RE: My Beautiful Child – D.O.B. 00-00-0000
Letter of Prior Written notice dated 9/24/2010


Dear Dr. Do-Little,

The purpose of this letter is to determine your reasoning behind denying my daughter, further outside speech therapy. In your letter of Prior Written Notice you simply state that you “respectfully deny” the request. Even with the additional two hours per week of therapy that she was receiving through Speech and Language Center for four months she was not able to meet all of her speech and language goals in the past. Now another expert has recommended that in order to overcome the issues of her Central Auditory Processing Disorder and gain from her education she requires two hours per week of Speech and Language Therapy outside of school hours, yet the district continues to say “no”.

I would think the district would take the recommendations of this expert seriously, especially considering that she is the district’s expert. I point this out to make it clear that although the district has repeatedly referred to this evaluation as an Independent Educational Evaluation it is not. It is the initial evaluation for CAPD offered by the district. This evaluation was only offered after several phone calls and my instructing district personnel on the fact that although district personnel have stated that CAPD had already been tested for, it had not since there is no district personnel legally qualified to test for CAPD. The only person qualified by law to administer testing for CAPD are audiologists, not school psychologists or speech therapists as I have been told by district personnel. Those people are only legally qualified to administer a screening test for CAPD, and given the significance of her CAPD I do not believe that the district was making even a minimal effort to screen for CAPD or it would have been revealed years ago when it could have been addressed with less difficulty and expense. In fact, had this been addressed early on, as it should have been, the district may have saved itself several thousands of dollars in overall special education expenses since from what I can gather, my beautiful daughter’s need for special education lies primarily, if not completely in her processing difficulties.

In addition, I do believe it is against the rules set forth in IDEA to conduct an IEP meeting without decision makers in attendance. Ms. DiGoo-Goo was not able to answer the question of additional speech therapy at the meeting, when in fact I believe you could have foreseen that the question might come up since the recommendation had been made in the report that the district was in receipt of well in advance of the IEP meeting on September 00, 2010.

Finally, I would ask that the district provide more than a cursory response in its Prior Written Notice, the law is clear that the district must provide an explanation, with factors that are relevant to the district’s refusal to provide necessary services as demonstrated by the expert who reported on this need in my daughter’s IEP meeting. Can you point to literature and/or other experts who would disagree with the expert the district referred us to? If so, I would wonder why the district would have referred us to her in the first place, but I believe we are owed more than a baseless opinion before we are willing to accept that this is the correct way to treat this educational condition.

Please get back to me at your earliest possible convenience and respond to my questions as well as letting me know how you intend to proceed to meet my daughter’s auditory processing disorder and speech and language issues since it is obvious that the IEP offer will not meet her needs at this time. When she was offered the services in her current IEP the district did not even realize that she had CAPD and so the district is apparently not willing to address this issue without adding further services to help her to overcome a condition that can be overcome with appropriate services.

Should you have any questions regarding this correspondence, please feel free to contact me. 000-000-0000.


Really Tired of the District Avoiding It's Duty to Educate our kids

cc: My attorney