Tag Archives: education

The Aspects of a Tragedy

I didn’t hear about the Stapleton family’s tragedy until this morning.  Then it was bits and pieces, no complete story.  I finally found Kellie’s blog and read the last couple entries.  Then I sought out a news report.

First, I want to say that I in NO WAY condone or understand what happened.  I do not walk in Kellie’s shoes, I do not fight her fights, live her life.  I do know there is always a choice and always help.  The help is often hard to find and when you do it is still difficult to get.  I also know that all life is valuable and that those with disabilities have just as much right to live and be happy as the rest of the world.  I could even argue that they have more right because they often fight harder, have bigger hurdles and are not treated as ‘real’ members of society.  Kellie’s choice was wrong.

But, I also understand the pain, fear, hopelessness and helplessness of feeling like you are not reaching your child.  That what you are doing to help is a waste of time and money and not helping at all.  I understand the fear of your child’s behavior, of not knowing when the next explosion will happen, what will trigger it or how significant it will be.

As Autism families, I think we sometimes feel broken.  We are not the broken ones though.  We are the ones striving to be whole and complete.  We do whatever, whenever to help our children.  We look for ways to include them, make them feel safe in a world that is often too overwhelming.  WE are not broken and neither are our children.  It is society, education, insurance and government that are broken. 

We fight to have our children included.  We fight to not respond to the stares, snickers or comments when we are in public.  We fight for inclusion.  We fight for access to ASD classrooms and services.  We fight for paras and appropriate education.  We fight for teachers to see our children’s strengths and help build them, not just look at the deficits.  We fight for speech therapy, occupational therapy, feeding therapy, behavior therapy, ABA, social skills therapy, social skills groups.  We fight for medical coverage for co-existing diagnoses.  We fight for laws and equality.  We fight for adult programs to support our children, who will grow up.

All this fighting is hard.  It is emotionally, physically and financially draining.  It leaves us feeling battered and bruised.  It leaves us feeling stressed.  It leaves our families feeling stressed.  It leaves our spouses stressed.  It often leaves our spouses and other children feeling left out or neglected.  It leaves us feeling guilty.  At the end of the day it leaves us feeling hopeless, helpless and defeated.

Don’t get me wrong, there are good, even great magical moments.  Small goals or milestones being met, new skills achieved, a day with no call from the teacher or school, a play date that lasted the full planned time.  There are even days or weeks where things seem ‘normal.’  Days when you can almost forget the battles you fight non-stop.  But it all cycles back around and the ever changing ebb and flow that is Autism shows its face again.

While we will all be quick to join one side of this controversy, I propose we do not judge this mom, this family, this situation, but that we unite and seek change.  Regardless of our stand on this tragedy, I think we can all agree that we need to make society, schools, insurance companies and the government aware of what we do, how hard we fight, every day.  We need them to be aware of hard it is and how little help there is.  We need to improve the system.

A single bad day does not drive a mom to think, let alone act on, the unthinkable.  A bad week or even year does not push us into that dark of a hole.  But a lifetime of fighting, climbing, pushing and begging that all goes unanswered does.  I have been there, in that deep dark hole, wondering how we were going to get out, how we were going to get better and move on.  It was not easy, it didn’t happen quickly, but it did happen.  It doesn’t stay sunny and bright either.  Occasionally we fall back into a hole and have to climb back out.

As you choose your ‘side’ and make your comments, either to friends, family, co-workers or on facebook, twitter and in blogs, please remember that while this mom made an unforgivable choice, the system failed Issy and her mom.


IEP from Hell–Gift from God

We had the Middle School Transition meeting today.  It was the most unproductive IEP meeting in the course of history, but also the most exciting and encouraging.  Let me explain….

We arrive and head in with the county school psychologist and ASD/behavior expert (who we know very well and has taken a personal interest in the Brick).  We go through the formalities..introductions, blah, blah, yada, yada.  Then, his current teacher (we shall call her The Goddess) speaks up about her concerns for middle school transition.  How, while he is functioning at grade level on regular curriculum materials, he needs support to be successful.  Not just academic support but behavioral support.  Keep in mind, we have chosen to do core academics (language arts, math, science and social studies through our districts virtual school program—we are so lucky to have this option—and have ‘electives’ and the social skills class done through ‘brick and mortar’ (the actual zone school).  Also bear in mind that until we get state standardized test scores (FACT) we will not know for sure which classes the Brick will be taking via the brick and mortar school. 

The Goddess continues describes the Brick and his learning style and challenges.  We move into classes—if he does not score appropriately on the state tests he will need to take remedial reading and/or math.  We will not get these scores until the last week (at the earliest) of June.  The reading specialist who is attending the meeting is concerned because the reading classes are strongly small group learning.  UGH!!  I, then question the legislation (I did my homework) and they bring in the VP.  He explains that we have ‘some leeway’ with math, but taking a reading class is a definite;  all 6th and 7th graders take a reading class of some sort.  OK, this is some progress.  We may be able to squeak in a real elective that the Brick elects to take. 

The Goddess asks about support facilitation in the remedial classes and electives the VP says they don’t offer it.  WHAT?!?!  Nope, no support facilitation except in language arts, math and science.   He goes on to say they have ‘never done it’ and they just don’t have ‘the staff for it.’   I understand the staffing and budget issues, I really do, but my kid needs support!  From previous experience and other parent’s stories I also know that getting a 1:1 in our district is all but impossible.  It generally takes a lawyer and a lawsuit as well.  Not that I won’t go there again, but it is not how I want to start our relationship with a new school.  The Goddess looks at me like ‘Oh, no.’ and ‘I’m sorry’ rolled into one.  I can tell by her expression that she is just as concerned as we are at this point.

I look at hubby and am telepathically sending him ‘We are going to home school!’ thoughts.  The Goddess goes on to explain that putting the Brick in this situation is setting him up for failure.  The team is at a loss.  Somehow we move to the behavior plan that the school psychologist updated last week.  It is amazing!!  She outlines every detail possible; how to interact with the brick, how to react to him for positive reinforcement, how to react to him for correcting behaviors.  She went so far as to put in all caps ‘DO NOT SUSPEND OR REMOVE FROM THE CLASSROOM.’  In the past, at the ‘Voldemort School’ (He attended a school for a short period that was a horrible placement for him.  We have, after 2 ½ years, gotten to the point we can drive past it without him becoming anxious.  We still, however, cannot name the school.  It has become ‘the school that shall not be named.’), he was removed from class and suspended almost weekly and it became reinforcing because he got to come home and not go to this hideous place that was mistreating him.

Anyway, the behavior plan is amazing.  If it is followed by his teachers we will be good to go.  But with no support facilitation there will only be the one teacher and we are still VERY concerned things will escalate before anyone can intervene.  Middle school is not a nice place.  It would only take one or two events and the Brick would become bully target number one.

About this time another lady walks in and the staffing specialist introduces her as the principal.  We move back to discussing the Brick’s learning style and challenges and the principal shares that all of the learning is done in small groups (for most kids this is a good thing) in all of the classes and that the school uses multimodal learning in all classes (also a good thing).  This means even the electives and remedial classes are group and cooperative learning based classes.  The Goddess speaks up again about her/our concerns for the Brick’s success in this type of setting with no support facilitation.  The principal said ‘Who said he wouldn’t get support facilitation?’  Someone on the team, I think it was the guidance counselor, explains what the VP told us.  The principal then says “It sounds like he needs a 1:1.  If he needs support our job is to get him support.”  You could have knocked me over with a feather.  I could not believe what I just heard.  She then asks (remember she came in half way through the meeting and knows very little about the Brick) ‘Does he have Asperger? Listening to you discuss your concerns and he sounds like another ESE student we had that we got a 1:1 for.’  Now I am thinking ‘Wow, there is even precedent, at this school, with this principal, for a 1:1.’

From here we are running out of time and have agreed that, until we get scores and know for sure what classes the Brick will be taking, we cannot complete the IEP.  With the new info from the principal the school staff needs to do some work and get a 1:1 for the three periods a day the Brick will be in school.  We agree to meet back, hopefully before summer, but possibly the week before school starts to finalize the IEP.  They let us take the draft so we could look it over.  Good thing because I have many things to add.

So in an hour and a half we accomplished nothing related to the IEP, transition into middle school, creating a schedule or defining supports.  We did get a principal who, very obviously, care for and advocates for her students.  If she follows through and is showing us her true dedication and commitment, I may call her Goddess #2.Image

Great meetings….More anxiety? (Part two)

So why the continued anxiety?? 

Here it is…..We have had a long, bumpy, scary and consequential journey to where we are now.  We were at a loss as to what to do and where to turn.  We went through an alphabet soup of diagnoses and we trusted professionals that we thought were knowledgeable.  At one point we let the docs talk us into having our son on seven (yes, 7) meds.  When the psychiatrist prescribed number 7 and we let the docs talk us into checking the little brick into a behavioral hospital in patient program that would last a month, I saw my husband cry for the second time (the first, and only other time, was when his grandmother died unexpectantly).  The brick was only 7 and, my God, what were we doing??  How did we get here?  We knew we had had enough.  We talked to the staff at the hospital and asked that they remove as many meds as possible, the doc agreed.  He stayed for 2 weeks and was discharged with a script for Behavior therapy, a med for hypothyroidism, a med for ADHD and a mood stabilizer—three meds.  The BT was only there two visits and asked about Asperger.  I was blown away!  Not that it was mentioned, or that the brick might be an Aspie, but that I had missed it.  How, as a pediatric SLP, could I miss that??  And then more guilt set in.  Not only had we put our child through Hell, but for no reason.

Let me tell you right now—it is TOTALLY different when it is your child.  I had been on a team evaluating kids for ASD for 5 years.  It is different!  I don’t think I was in denial (because I did cartwheels when we got the diagnosis—it explained so much), but was blinded by parenthood.

I cry each time I tell this story.  It breaks my heart that we put our child though all of this.  That we tried to change something in him that he cannot change, it is who and how he is.  It was us that needed to change.  But, we didn’t know better, we trusted the docs. 

We got an appointment and diagnosis and, with the right interventions and less meds, things got better. 

The little brick missed most of 2nd Grade.  We got an IEP and a new school with an ASD class shortly after school started for 3rd grade.  The new school was the worst thing we had ever done.  The school and staff/teachers were awful!  They had the brick Baker acted and arrested (transported to juvenile detention in a cruiser) in the 4 months he was there, not to mention several suspensions and many days of being sent home because of “his behavior.”  Talk about teaching a kid to act out??  After the arrest, and it got to the point we were forcible removing him from the car in the mornings, we said enough is enough and called a lawyer.  I also kept him home from school.  After the arrest, I was not sending him back there.  They could arrest me for his truancy but he was not going back.  The lawyer helped us get a new school and the brick now thrives.  He had made up the lost education and is getting As and Bs in regular 5th grade curriculum.  He gets on the bus willingly and enjoys school.  He is a “buddy” to NT kindergarteners and younger kids in his ASD class.  He goes to art with no aide and participates in Gen Ed reading with no significant issues.  He is truly THRIVING.

Enter middle school transition……

Because the brick does not test well on the state’s standardized tests; he is going to have remedial math and reading.  I do not doubt that he can benefit from them, any child would benefit from extra help, but that means his schedule will be language arts, remedial reading, math, remedial math, science, social studies, and social skills.  Basically he will have six academic classes and one elective that he doesn’t get to choose.  We don’t even have an art class to dangle as an incentive.  He is finally doing well, academically, behaviorally and socially, and enjoying school and we have this…….

Now we have to decide.  Continue with brick and mortar school and what they can offer, blend the brick and mortar school with virtual school (our district has a program)—but this still means four core subjects, two remedial classes and social skills, only the four core classes would be at home on his time—or home school.  If we home school we can still take advantage of some of the school services (like speech therapy and, I think, social skills).  If the brick gets better scores this year on the state’s standardized test he may not have to take remedial classes, but we won’t get those results until July.  Talk about cutting it close.  We have talked to an advocate and there is no way around the remedial classes.

So, while things are looking good and going well, that only makes it harder to decide.  If the middle school had been mean and nasty, it would be easy.  But no, they were perfect!  If the brick could choose he would pick homeschool.  He is very anxious about the change.  He is worried about eating alone at lunch, navigating the hallways, finding classes and fitting in.  He knows what his challenges are and that he responds/reacts differently.  He knows the social consequences of a meltdown in front of typical peers.  And the older kids get, the less forgiving they are of those sorts of things.  While he would be going to the same school as the neighborhood kids for the first time since first grade, he has no neighborhood friends to hang out with.

I worry about him being bullied, being jostled in the hall and over-reacting.  About him being able to handle six academic classes (academically, socially and psychologically) and an elective he doesn’t want.  Can he keep it together long enough to make it though the whole day?  Can he keep it together for Gen Ed classes?  Will his behavior back slide?  Will he get the support he needs?  Will he get suspended for defending himself?  Will he get suspended for melting down?  Will he continue to enjoy school or hate it again?  Will he find a safe person that he trusts and can go to without feeling threatened?  Do we try brick and mortar and pull back if we need to?  If we do that what will it do to his self-esteem that is already so fragile?  What do we do?!?!?!!?  I know we will never know if we don’t try.  I am just not sure it is worth the risks. 

Great meetings….More anxiety? (Part one)

We had an amazing IEP meeting and a great Student Study Team (SST) meeting.  So, why am I more confused and anxious?  I think I know……

Middle school terrifies me.  My middle school experience was not the best—I was bullied.  I was not “geeky” or “brainy” or “athletic” or any other real click.  I was one of those kids that got along with many groups and lots of other kids.  I was in some advanced classes and some regular classes.  Some of my elementary friends had gone on to be cheerleaders and football players.  I had a group of friends that were my “besties,” but could work on a group project with anyone.  But I was bullied by an older girl.  She sought me out in the PE locker room, the lunch room, the hallways, before and after school…and she was good at it.  Nothing too overt and not in front of the teachers. 

Our 14 year old has shared that he has reported (anonymously) bullies on three occasions in his school.  He has even stepped up and spoken up to his friends who were saying mean things and talking bad about other students who are “different.”  I worried about him at first, but he is not the brick.  The teen can stand up for himself in the “right” way.  He gets the social rules and expectations.  He is a neuro-typical kid.  And a social butterfly.

We had the IEP meeting last Thursday and I really did expect it to go well.  While there are not sides in an IEP meeting, we often come to the table armed and ready for a fight.  Lord knows, we have had our share of these meetings.  The last two and a-half years though (with the exception of a single meeting—that I have a feeling was the result of some mis-communication) we have not felt that way at all.  We have an amazing IEP team.  Our ASD teacher and the Gen Ed teachers really have the brick’s interest at heart.  They see his needs and help us get the services and goals added.  We have been very lucky!  We originally scheduled this meeting as a follow up for spelling and reading concerns post vision evaluation.  The brick’s teacher asked if, since we were due for an update soon and scheduled to meet for the SST meeting with middle school the next day, we could update the IEP as well.  Sure, no problem.  We got spelling goals added, updated the PLOP (present level of performance), added goals,  tweaked old goals, added some new accommodations (as a result of the vision eval) and had a great meeting.

The next day, Friday, we had a SST meeting with the middle school.  A SST meeting is a formal meeting, like an IEP, where the participants discuss the child’s progress, concerns, strengths and challenges. Then come up with a plan and re-meet to complete the IEP. Everyone who knows the child gets to speak. Because middle school doesn’t know the brick, this put the ball in our court and let us run the meeting. If they don’t know him, his strengths, weakness, progress or concerns, they have nothing to contribute until the plan and services/accommodations are being discusses. That let us accurately and completely describe him and his needs. And, it worked like a charm.  They listened to us.  I spoke, daddy brick spoke, and the brick’s ASD teacher was there and spoke.  The middle school really only spoke to offer info and answer questions.  It was perfect.  We felt heard, our questions were answered and we left feeling good about the school and the staff/teachers. 

So why the continued anxiety?? 


To be continued……