Karen Simon, special education advocate

As Stratford begins its 2023 election redistricting process, it is important to consider the impact that this process can have on the fairness and balance of political power.

Unfortunately, history has shown us that redistricting can be manipulated for partisan gain, with the Republican party using gerrymandering to consolidate their power in Stratford for over 20 years.

In our latest blog post, we delve deep into the tactics used by the Republicans and the consequences that have resulted from their actions.

We urge you to take a closer look at the redistricting process and demand that it be done with fairness and transparency so that the voices of all residents can be heard and represented equally.
https://bit.ly/41kkVAZ

This heartbreaking story could be about any state in the country. We have yet to write the CT. version.
The kids from the autism epidemic are now growing into adulthood and it doesn’t appear anyone has planned for it. Parents are getting older along with them and can no longer do the things needed to keep their kids safe.
It’s a very long article that discusses the issues that Pennsylvania is facing and a previous even more depressing article about Illinois. but make no mistake... we’re all in this together.

Falling Off the Cliff, Part 1: Lack of solutions for adults with disabilities creates crisis Decades after the state closed notorious institutions that warehoused people with disabilities, we still have a crisis in care.

Something happened today... I've been an advocate for well over 20 years. I've attended hundreds of ppt's, team meetings, mediations, advisory opinions and due process hearings. I've held it together throughout the most gut wrenching ppt's where almost everyone else around the table was in tears. Today that changed for me!
I was so overcome with emotion that I couldn't control my tears. And the good news is that they were tears of joy!
A little background info.
I have advocated for this family since their identical twin boys were babies newly diagnosed with autism. One was clearly higher functioning than the other but both were significantly impaired. They are as close as brothers could be and received the exact same intensive ABA therapy throughout the years. One learned to talk and speak in sentences, was amazing on the computer, competent with language and could be completely mainstreamed with support yet remains obviously impaired.
The other twin could get his needs met with one word requests but was always educated in a self contained classroom where he required visual prompts to communicate. He was profoundly impaired in all areas.
The boys attend the same middle school and see each other often throughout the day passing in the hallways of their home schools.
By any account both boys received the best intervention by a highly regarded outside ABA agency. The parents know they have done everything they could for their boys and have no regrets with how their functioning levels grew further and further apart.
This past weekend Mom noticed a $200.00 charge for an strange app on her I phone. To her knowledge no one knew her password or had access to her I phone. She thought it must be a mistake and contacted the Apps Store to see about removing the charge.
The store shared with her that the app was indeed ordered from her I phone with her password and showed her what was ordered. When she saw what the app was she knew it was no mistake and her heart dropped.
She rushed home to confront her higher functioning computer savvy son about how he was able to figure out her password, why he would buy this outrageously expensive app and the consequences of his actions.
Now this son who is higher functioning is still significantly impaired and has a hard time communicating why he does anything. Yet he was able to crack Mom's password and order an app which meant he spent lots of time doing trial and error, and really wanted this particular app to play with.
So what was Mom finally able to find out? What made this app so important to her son?
Her son had researched a lot of different apps and told her he decided that this one was the one app that could help his twin brother talk and that's why he went through all this trouble to buy it.
He wanted to have a conversation with his brother and that simple response made me cry today.

Ok so Summer's ending and a new promising school year is set to begin. By now you'll know what teacher your child is getting and even perhaps what para(s) are assigned if necessary.
One of the things that worked for me in my never ending battle to have my son fully included is taking the time to write a sort of introductory letter to my child's new special ed and mainstream teachers. And I am also including all the teachers like art, music, gym, library, computers etc., or if your child is in middle school or high school the seven or eight different teachers your child will see throughout the week.
Don't assume the sped teacher is doing this even though they will tell you they have already had a meeting with the teachers and are communicating with them regarding your child's needs. The truth is they may have had a half hour meeting with SOME of your child's teachers and discussed 15 different kids on her case load. Guaranteed they have not touched base with the specials teachers like art and music.
I wanted the teachers to know Christopher beyond what's on his accommodations page so I developed a "public relations page" for him and called it simply:
Tips for Teaching Christopher!
I'm still writing one even though Chris is taking college courses at Fairfield University and Housatonic Community College, I still find the professors very receptive.
My rule is make it one page, no longer and touch on the important things.
Sample:

Christopher has autism, epilepsy, juvenile diabetes and adhd which make it difficult for him to listen and process information.
He is smart, motivated and prefers to learn in the classroom with his peers.

You need to know that he may be looking right at you and even nodding his head yes but he may not have a clue what you just said.

Many teachers have found it helpful if they address him like he his hearing impaired, making sure he is looking at you and repeating the instruction. Also have him sit near where the instruction is taking place.

Christopher has an ABA trained therapist/shadow who is there to intervene only when necessary. It is your class, you run the show, he is your student to be treated just like any other student. Only if he isn't responding to your direction after two try's will the shadow step in. The shadow can answer any question you have about Christopher but his interaction with Chris is only on an as needed basis. You are the one Chris will orientate to.

Chris is more successful when there is a frame of reference familiarizing him to the topic so it is helpful if we can get material a week before a unit is introduced so we have time to pre teach the concepts that will be discussed.

There may be a time when his blood sugar is low and needs to be checked but his shadow will discretely handle those situations when he has to leave the classroom.

Breaking down instruction into small groups and hands on learning are beneficial for him. He has a difficult time with abstract concepts in a lecture format so the more things can be presented in a concrete fashion the better. The shadow will post teach a concept hard for Christopher to understand.

We don't expect any modifications in the classroom setting, the shadow will help Chris keep up utilizing accommodations necessary such as graphic organizers so there is no disruption for any other student.

As language is difficult for Chris having an idea of what the five to ten most important facts or concepts per unit are that will be tested and getting them ahead of time and also utilizing a multiple choice format and word banks has proven successful.

Christopher responds to positive reinforcement from the teacher even if it's just a smile or a thumbs up to let him know he's doing what he's supposed to be.

Thank you for going out of your way on behalf of Christopher it is greatly appreciated!

I haven't posted in a while because I have been in a panic about the loss of DDS funds for my son during his transition from school to adulthood and I have been spending all of my free time making phone calls, writing letters, signing petitions and going to numerous meetings around the state with legislators to fight these cuts.
We are being told that funds have been put back but we are still holding our breath.
Now back to Fairfield Public Schools to the case that never ends... the parents being sued by Fairfield school district because they dared to disagree with an assessment done by the school and asked for an Independent educational assessment {IEE}as is their right.
The district sued them and the story keeps getting worse and worse even though we won the case in a court of law.
Anyway I wanted to post that UNBELIEVABLY the Fairfield school district has still not paid the family for the $7000.00 judgement the family won against the school district way back in February.
Even more unbelievable the district now has, in fact, filed an appeal in SUPERIOR COURT to try to have the court reverse the verdict. All this for a $7000.00 judgement against Fairfield... apparently the sped director doesn't like to lose especially to an advocate
If you remember this case, the state hearing officer ruled that the neuropsycholgical assessment FFLD schools did on a seven year old child was not appropriate due to testing not being complete,or factual and offered no recommendations that could help the child.
What the FFLD school district spent on this case could have given at least 6 independent neuropsych assessments to other kids who needed them.
It is truly outrageous what the district has paid to BEAT these parents into the ground on this case. We have filed a Freedom of Information request with the town to get the exact dollar amount the town spent since this ridiculous case began almost a year ago to show taxpayers how their money is being spent. The schools keep asking for more and more money but someone needs to check what the district is paying for lawyer fees and how those funds could be reallocated for much needed services.
This is how vicious and mean spirited an arrogant Sped Director gets when she has no oversight and thinks nothing of spending taxpayer dollars well into the double digits for a case she could have settled for $3500.00.
Just know that the parents are far from backing down from this case and have hired an attny to handle this appeal and make sure the ruling stands even though they will have spent an obscene amount of money for nothing.
This special ed director needs to be reigned in and I encourge all of my FFLD parents to post this on their pages and request their own FOI request so they could see how much the town spends on special education law suits....spread the word.

Due Process Update....WHEN WILL IT END.....So now the school district filed a new Motion to Clarify stating that the IEE that the parents commissioned is invalid because of questions raised by the hearing officer regarding the prompting technique used by the neuropsychologist to keep the child on task in order to finish the test.
The district doesn't want to pay for the parents IEE but now unbelievably wants to force the kid into even more testing.

The prompting the doctor used had nothing to do with the integrity of the test nor did it have anything to do with prompting for correct answers...it was simply so the kid could pay attention long enough to give information on what he knows and doesn't know so a baseline could be established for IEP development purposes.

Now for all of the autism parents out there it is so ridiculous for the subject of prompting to be questioned because we know that without prompting to keep our kids on task, our kids would finish very little. our whole life is PROMPTING. Teachers know this, school psychologists know this and anybody else who tests kids on the autism spectrum know this so why is the Fairfield school district challenging this?
Because they lost the case and they don't like to lose! They are going to make life miserable for these parents that dared challenge them.
As a result of this I was forced to also file my own Motion to Clarify.
I filed it based on the fact that the district neuropsychologist also prompted the kid against testing protocol, and even invited the dad into the testing room during the testing to keep the kid going. But interestingly even with all that effort the doctor still came up empty with invalid results due to incomplete testing and then blamed it on the child for his bad behavior

Understand that there are distinct protocols in formal psychological testing that must be followed and I get that. However, it is ridiculous and unfair to argue that for a kid with a disorder that affects his ability to attend long enough to finish a test, that he is simply untestable. Then are we also saying he is unteachable because he needs support in the classroom to stay on task and needs directions explained to him to give him a frame of reference?.
Well that kind of thinking sets us back to the 1960's version of special education law and none of the parents I know will ever let that happen..

Ok, so we won the due process case against FFLD and the parents and I are thrilled.
However, interesting point in reading the entire ruling though is how hard the hearing officer tried NOT to rule in the parents favor. it's pretty scary for parents considering filing for due process how the deck is stacked against us from the start. I could not speak at the hearing because I am not a lawyer and that put us at a distinct disadvantage but I wrote out everything for the parents during the whole trial and they did a good job presenting it at the hearing. The district began by trying to get most of our exhibits eliminated and it went downhill from there.

But let me begin by saying this case should have NEVER been brought against my parents. We asked for a neuropsych eval at a PPT because the kid who had never had behaviors before was demonstrating frustration at school culminating in a suspension for this second grader when he hit a peer on the bus. After much discussion the school principal, a very decent guy, did the unthinkable in FFLD and went over the head of the central office administrator and agreed that a neuropsych eval was necessary.
That should have been the end of it but the sped director was on vacation in Italy and when her administrator told her what the principal did without getting it approved first she wanted to send a message to this principal about her power and thus our nightmare began.

The sped director limited the selection of neuropsychologists to two doctors without consideration of the parents choice.
She sent written directions to the doctor on what she wanted to see in this report unbeknownst to the parent.
She sent only the documents she wanted the doctor to review not the whole file
She greatly limited the time and dollar amount of the eval and gave specific instructions that the doctor only share the draft report with the district.
She even called it a psychiatric evaluation in her scope of work request to the doctor which we found out only in the discovery phase of the trial..
True to form, the doctor did a real hatchet job on this second grader and described this little kid as having all kinds of issues, bipolar disorder, mood disorder, intermittent explosive disorder even threatening the doctor's life with a pencil.
The doctor reported he couldn't do any academic testing and several other tests because of the dangerous behavior of the kid.
Of course he never told the parents this, they found out when they read the report.
Unbelievably with virtually no testing he still recommended a therapeutic psychiatric placement for the child and psychiatric counseling for the family.
We were saddled with an incomplete, inaccurate, angrily written, inflammatory report that was diagnosing this second grader with all kinds of serious psychiatric disorders.
Literally, all this kid did was punch a kid on the bus because he didn't want to sit with him. He is fully included, has no academic issues, has no issues outside of school and is a very sweet kid with autism and behavior consistent with an autism diagnosis.. This report was like killing a mouse with elephant pills! What was the agenda here?
We vehemently disagreed with the report as is our right and asked for an independent neuropsychological evaluation of our choice.
The district refused and decided to stand by their report even though it wasn't complete and as is the law filed a due process against the parent forcing the parents into a hearing.

Normally incomplete testing in a neuropsych eval would almost guarantee a district agreeing to an IEE for the child but not here.
This whole episode is about an arrogant sped director who brought a frivolous mean spirited action against parents who dared to challenge her power

The hearing began in August and ended in February and was a costly, emotional, at times vicious trial that should have never gone beyond the first day when the hearing officer learned that more than half of the testing wasn't done by the doctor.
The hearing officer should have immediately ruled against the district on the grounds that it was outrageous that a report would be given to the parents with incomplete testing without them knowing it and then told by the district that it was good enough.
It was outrageous that a neuropsychologist who didn't come close to completing testing, did not review the whole school record and with incorrect family history would assign such devastating diagnoses to a second grader that would follow him around for life.
It was outrageous that the doctor had not one new recommendation in the report for the team to consider.
It was outrageous that the district would put thousands and thousands of public dollars towards this case when it was just a few thousand to provide the independent eval for this child.

But the hearing officer did not do any of that and in fact bent over backwards to legitimize this case right up to the end. He allowed the district to get away with enormous transgressions throughout the hearing. We went home broken and exhausted every day.
But even with all that he still could not rule in their favor although it looks as though he really tried which seems so unfair to us even in our victory
Don't get me wrong WINNING is far better than LOOSING and we are so happy that the district will finally pay.

If your interested in reading the complete ruling its not long... go to Ct. Special Education, due process unit, then look for hearing decisions. We are the first and only case to be fully adjudicated so far this year so it's the only highlighted case.
I would love to hear from you.

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Karen SimonKaren Simon, special education advocate

One of the most difficult decisions parents of kids on the autism spectrum eventually have to make is if and when to try medication for their children.
It is a gut wrenching decision for most of us and not just because of the seriousness of giving them mind altering drugs often meant for adult psychosis but more so, does it mean we're giving up on our kids learning naturally how to listen, pay attention, be social, calm down, self regulate, sleep and just be in the world?.
Does it mean we're failures as parents because we can't control our kids without drugs?. I know we have all felt that way at some point and even those parents that accept that their kids need medication and have medicated them for years have felt judged by family members and friends that question whether the kid really needs medication. Are we just exhausted parents taking the easy way out?
The answer is a resounding NO!
When my son was little and having a long bout of insomnia and was up at 3 am each night to the point where I could no longer utter a coherent sentence, I begged my son's doctor for sleep medication to help us all get a full nights rest. He calmly said " Mrs. Simon, we don't medicate children for the benefit of their parents"
That shut me right up which is hard to do!
Then I explained how Christopher was falling asleep in his ABA therapy session and was just plain irritable all the time. The doctor wanted to know how active Christopher was during the day, was he stuck in a room all day, was he playing outside, what did his therapy program look like, how much physical reinforcement was there, what did his BCBA think, could the doctor contact the consultant, the school nurse and the teacher for more information. Then he asked us to take specific data on what Christopher ate and when, his bedtime routines, the temperature of the room etc. Only then after several visits and after he was absolutely sure we were doing everything possible did he prescribe medication. The medication helped immensely and I never regretted our decision to medicate early.. I know that with Christopher's severe apraxia on top of the autism he would probably be nonverbal today if we did not medicate when we did
This wise doctor said he certainly understands why parents are reluctant to begin medication too early but they should also be aware of how much learning is going on in the early years of brain development from birth to five years old. If the child isn't sleeping, can't attend or disruptive behaviors are getting in the way, it greatly slows down his rate and ability to learn.
If parents are spending so much time and money in early intervention they need for their child to be ready to learn and if medication can help it is a wise decision.
I also think that it's nobody's business but the parents and the doctor.
In the beginning I never told anyone we were beginning medication, I waited to see if teachers, therapist and family members noticed a difference. When I looked at the data and saw Christopher's behavior, response rate and acquisition rate dramatically improve I knew it was the right decision.
Don't get me wrong choosing medication is never easy, it's a moving target that continually needs adjusting, careful monitoring and strict adherence to protocol but when its the right medication at the right dose it could make a huge difference in the child's quality of life..
It did for Christopher.


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Christine Richards Kyse You were lucky your doctor pursued the issue. Too many dismiss anxious moms.

February 24 at 6:56pm · Unlike · 1
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Suzanne Ciri Fevang Amen! I believe what

WE WON!!! The due process case against Fairfield was adjudicated in our favor... More to come... so excited