When The Educators Need To Be Educated

I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack.  I am not someone who jumps on my blog and bashes people.  I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road.  However I do try to be honest about our experiences as a family.  And I do want to share what we have been going through.

Before I do, I have a confession.  When Jack first started school, and we were successful in keeping him mainstreamed for several years, I really didn’t understand what all of these other parents were talking about.  We struggled in getting Jack the help he needed because he was labeled “high functioning”, but with the help of an advocate, we were able to work through that, or at least to an acceptable extent.  So why were so many parents of special needs kids calling public school a nightmare?  Fighting so hard with staff? 

All it took was one bad experience.  As a special needs mom, my children have attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because different programs are just housed in different places.  For the most part, we have had completely positive experiences.  Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive.  When he was moved to another program this January, it was not because he was failing to meet or make progress towards his IEP goals, it was because the teachers found he made the most progress in a small group setting, which this new program was said to offer for all core curriculum.  And to be fair, the program did “offer” this. 

I wish I could pinpoint what happened.  Where it all went wrong.  All I can really say is that the new school was not prepared to handle my son.  That my son went from making progress in all IEP goals in a mainstream program (since pre K), to a “more supportive environment” and his progress completely tanked, per their report.  I say per their report, because we saw a very different child at home, one who made great strides in his ABA goals, one who continued to be able to socialize with his friends from his old school with some support, one who successfully participated in an adaptive team sport, and enjoyed it!  In school?  I was told that he was not “capable” of “being with his peers”.  He was fully pulled out for all academics, and often pulled out of the pull out (to a one on one setting instead of small group).  He was isolated- not able to eat in the cafeteria at lunch, something that was NEVER an issue, not even for snack time in pre-k.  Something that my 6 year old “severely autistic” son does daily at his school, because he is supported.  His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting.  Which by the way has always been the bane of his existence.  No matter what justification was given to me, my opinion remains that the school did not want to deal with my son.  They did not like that he, as my husband so eloquently put it “upset the apple cart”.  This was a new, small program, and when I toured the school back in December I was shocked by how quiet the classroom was- my son is not quiet.  He is not naughty- but he is not quiet.  I think this was not appreciated by some of the staff.  I think his need to socialize and unfortunately disrupt some of these other children was resented.  I think that any and all possible behavioral issues were emphasized and examined under a microscope.  When your child is at home on the weekend and you ask him to go to his room and do something and suddenly for the first time in his life he responds with “is that a threat?”, it is clear that someone has been asking him that same question. 

I am not a mom who puts her son up on a pedestal.  I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible.  That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted.  Things that he would say out of frustration in his old school setting were interpreted in the worst possible way at the new school and perceived as actual threats.  And while he definitely was trying to express an emotion or frustration, it was never taken into account that he was scripting, something he has done since the age of 18 months old.  He pulls statements from programs he has watched or books he has read, and puts them into his dialogue if it seems appropriate to his situation.  When he was younger it worked against him because he was using sophisticated vocabulary and after people heard that, their expectations of his intelligence became super high.  Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum.  He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought.  Yes, it was inappropriate, I get that.  But was it meant in the spirit in which it was received?  Ummmm, no way.  I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode….

I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”.  No, he does not have spiny cheeks, he is quoting from a book about a little porcupine that we read when he was two years old.  He is telling me “I am sad, so I am crying.”  And I get that, so I don’t look for whiskers, or god forbid quills!

I’m not suggesting he doesn’t have any behavioral issues, because he does.  As our children get older, they are not maturing at the rate of their peers, which SHOULD be a duh for all parties involved in their care, since they are “special educators”.  Our children’s atypical behavior, while it has not changed, does stick out more than it used to.  And in a new setting- they are penalized for it.  Inappropriately.  They are judged harshly, they are treated like “problems.” What I am saying is that while it’s not fair, and it’s not right, we as parents have to prepare ourselves for this eventuality.  It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility.  We went to his most recent IEP meeting (last Thursday) and it was suggested by the central representative that he would be ok in a type II special education program (which means still housed in a mainstream school, with the opportunity to interact with typical peers, as opposed to a type I, which is a separate day school).  My response was this- he absolutely should have been fine- however after his and this family’s experiences this past spring, he needs time to recover. He needs to feel supported and have time build his self-esteem.  When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging.  We are just now, in summer school, working through his tears each morning because he does not want to go back to school.

As a parent, this is not only heartbreaking, it is maddening.  I, as Jack’s mom, have been traumatized by this experience.  My level of trust in the school system has plummeted.  I am at risk of becoming “that mom.”  The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere.  The one who calls every time my son comes home saying something negative, to make sure everything is ok.  I do not want to be “that mom”.  I never was.  But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment.  And without question, he was denied both of these things this past spring.  And he is my child who can talk to me!

At the  IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget.  In the presence of the least restrictive environment specialist, the school behavioral specialist, our IEP advocate, and Jack’s BCBA, we were told that this school’s program was there to support children with learning differences.  We were told that they were not “equipped to handle autism and all the support that is needed for autism.”  Our BCBA still brings this statement up frequently- as someone who has been in special education for over 20 years, she was shocked into silence herself.  I want to say this, for the record.  None of us are- equipped to handle autism when first we encounter it.  I can assure you that John and I were not equipped to handle autism.  And yet, here we are, doing it!  Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year.  If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice.  My son is phenomenal- and he will be back in a mainstream school in the next few years god willing.  More education for mainstream educators is clearly needed, and needed quickly.  My son did not deserve to come away from this experience feeling like he was a problem.  And it will take years to get him past this.  Equip yourselves, because if you are supposed to help children with “learning challenges”, I can guarantee you will be seeing more children with autism in your program. 

 

https://www.autismspeaks.org/blog/2016/06/21/open-letter-teachers-who-have-students-autism

 

 

 

 

 

 

Jack and Nate's School Progress- What Next Year Will Bring

It's been a crazy, but over all , a very successful year for the boys in school.  

We had an IEP meeting for Jack earlier this spring and I realized I never gave an update.  First of all, I did it advocate free!  Hooray for me!  John came too- it was his first official IEP meeting (although he has been to other types of meetings of course). I told them to take it easy on him, they seemed to listen, ha.

So the changes for Jack:

-As I mentioned before, Jack has been "dismissed" from his special needs reading group- he is up to first grade level which is awesome so he will no longer be pulled out of class for this

- He continues to require a full time aide in all academic settings

- BUT (and all the autism parents are applauding as they read this), he can now INDEPENDENTLY walk to and from the bus, AND participate in PE and of all things, music, without an aide.  Art, is another story hahaha.  It's progress people

- He continues to have sensory needs, and will actually have increased time with the OT (and I didn't even request it!)

- He will continue with speech for social interaction purposes

- The amount of special educator time in the classroom has increased, since the amount of time he is being pulled out of the classroom has decreased

- He is pulled out for 1/2 of math and is in the classroom with the aide for the other half

I am thrilled with his progress.  I am also thrilled with his IEP.  I never in a million years thought I would use "thrilled" and "IEP" in the same sentence, but there you have it.

The crowning jewel of the school year-

I applied to be a chaperone for the spring field trip.  I didn't have time to do this- at all, but last year my attendance was basically required to help with Jack.  I was rejected!  Rejected!!!! And when I emailed just to double check, they said they were sending his aide, so he should be fine.  Whoot!

Nate- We had a parent teacher conference last week as an end of year wrap up.

- He will continue twice a week services with Miss Gwen (she does one on one ABA-type work with him)

- He will move to the afternoon class, as he will be 5 in December (which means he will start attending Cisco Center in the mornings since mommy is still working full-time)

- His speech and OT continue at the same level

- He will continue to share a full time aide with another student

The important take away is that each and every staff member at the meeting has seen significant progress in Nate.  Good stuff.

That's about it- very proud of our boys.

IEP Planning- Parental Input

Tomorrow is Nate's IEP meeting.  My heart is in my throat and I don't want to go.  I don't want to confront his lack of progress yet again.  But I am also in a panic, and at this point want to basically beg for more help.  He is not a behavioral problem- and this is an issue, as it was for Jack.  Behavioral issues get attention from the schools because they become safety concerns.  My kids' issues are just as important, but they don't "disturb" others, which is what makes this so challenging.  That being said, no one can look at Nate's various assessments and deny that what we are doing- it's not working.  And believe me, we are doing.  Usually when I provide parental input for an IEP meeting it is very straight forward, here is what we have, here is what my son is struggling with, this is what I think he needs.  I am not doing that this time.  This time I wrote a letter based on my feelings of desperation.  I don't know that it will do any good, but I could NOT sit down at this point in time and express the same concerns I have been expressing for over 2 years.  Because they have not changed, they have not improved.  It's absolutely terrifying for a parent, so I chose to express that.  I don't think there is much more they can do for Nate, so listing specifics is not going to help.  They know, they already listed those same concerns in their portion of the IEP planning documents.  Here is what I wrote:

Parental Input for Nathan Fury’s IEP:

Our concerns for Nathan remain numerous, and our degree of concern has increased substantially over this past year due to the lack of any discernable progress.  Nathan was recently assessed at NIH as part of the study he is currently participating in and it comes as no surprise to us that receptive and expressive speech remain at the same level as they were in May of 2013, which is also the same level he tested at in November of 2012 and frankly the same as September of 2011.  It is clear that despite all that is being done for Nathan, his current interventions are inadequate.  Not just in school but in general.  For every word he gains, he loses another, for each skill he learns, he loses others. 

Nate’s current private interventions:

Private OT twice a week

Participation in the Cisco Center special needs preschool programs 4 afternoons a week, where he also receives some speech services

Medical:  Nathan began Aricept with NIH approximately 10 days ago, he remains on a gluten/casein free diet, a probiotic, antifungal treatments, fish oil, and mitochondrial cocktail,

Nathan is currently on a waiting list for Cypress Creek Therapy Speech Services with the intent to take him as frequently as possible, up to 3x/week if recommended.  Our private insurance has only recently lifted the extremely tight limits on the number of therapy sessions allotted- they have relabeled his therapy as “habilitative services”.

This is all in addition to the services he is receiving at Benfield, for which we remain extremely grateful.  That being said, Nathan has been receiving early intervention services for over 2 years at this point with little to no progress, despite the relatively intensive nature of the program.  He has attended extended school year services, and when not in that program attended Cisco Center full time over the summer.

I think that we can all agree on Nathan’s main barrier to learning.  His sensory issues take over in most situations, he is unable to concentrate or attend to activities due to these needs.  I have tried the following:  Wilberger brushing protocol.  Chinese massage (yep), weighted blankets, sensory schedules including multiple swings we have mounted in our garage, weighted vest, fidgets, and chewies.  We are unable to engage Nathan in play 98% of the time in the home setting- when we do, his play remains sensory based, ie, he will play with Thomas trains but after a few minutes he ends up dangling the longest string of cars he can put together that can withstand gravity in front of his face.  He can string literally 20 monkeys in a barrel together, but once again, he dangles them in front of his face for visual stimulation. 

At this point, my question to the team is what else can be done for my sweet boy?  Our family has faced these challenges in the past with our older son, although they were not nearly as severe.  We are at a loss.  Are there other, more intensive, programs available to Nathan?  Could he benefit from a different setting at this point?  Are there further services available to Nathan at Benfield- individual speech, further OT intervention?

As his parents, his lack of progress is nothing short of devastating and it has left us feeling that we are missing some huge piece of the puzzle that is Nathan.  We are open to any and all interventions at this point.  I have also attached his recent assessment done at NIH for review.

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

Sometimes You Just Have to Say- WhooHoo!!!!

Today could not have gone better.  Yes, that came out of this cynical mommy's mouth.  Could not have been better.

Everything was acknowledged and all of it was addressed.  I would have maybe liked more OT services, but the OT does go to SIX schools, which is absurd, and with the amount of services he will be getting in other areas, I am satisfied.

Basic rundown of Jack's new services:
-He will continue to have an aide during any period of time when he is not receiving individualized services
-He will have a scribe for any lengthy assignments or any tests
-He will be placed in a quiet environment for tests and given extra time as needed
-He will receive 6- 30 minute speech sessions each month (was not getting ANY speech)
-He will receive 45 min with the OT one on one each month
-He will receive 1.5 hours a week in the classroom with the special educator
-He will receive an hour a day outside of the classroom with the special educator- 30 minutes of language arts and 30 minutes of math (this is over double what he was getting)
-He will be getting an adaptive technology assessment to see if he qualifies to utilize a word processor or something else for writing

Holy moly!  Seriously, could this have gone any better?  I mean, I could choose to feel sad that my boy needs this much, but I've already had that time, right?  Now, I choose to celebrate that the hard work has paid off.  Despite my underlying feelings of being an inadequate mommy, I am very proud of two things.  I requested the adaptive technology assessment and they said yes!  I was the one who requested the speech assessment- it resulted in another 3 hours of services for Jack each month.  After today, I really and truly feel like they are giving him the tools he needs to succeed in the classroom.  This will give him his best shot.  And we are getting his eyes checked next week.  And starting him on a new ADHD medication in mid-May that is having excellent results in kids with Aspergers. And our family therapist emailed me with the name of one of the best child psychologists in the area and told me that she is expecting an email from me.  GOOD DAY

The one dark moment of the day came when we had to change Jack's educational diagnosis.  It has been developmental delay up until now.  He is too old to carry that diagnosis any longer.  And he needed to get his new diagnosis as one way to qualify for these services.  The assessments all said the same thing, including one the teacher did, and one I did, as well as the assessments by the school psychologist.  Autism.  YES, I knew that, of course I did, but it will never get easier to hear your child being labeled with such a serious condition.  Once again, I am choosing to take this in stride today- he is getting what he needs and THAT is what matters.

Ode to the IEP

This is how far I have sunk people....really far

Twas the night before IEP's and all through the house
Not a creature was stirring, well, except mama
The papers were stacked by the front door with care
Because mama knew that IEP day soon would be there

The children were nestled all snug in their beds
With visions of zip lines zooming through their heads
And me with my coffee and my highlighter out
Tried to discern what these "goals" were really about

2 out of 3 trials independently they said?
They want Jack to learn to stand on his head?
He would benefit from all of these things they declare
But when I look at interventions, well, none of them are there!

Additional adult support is the key
I used to think that that person could have beeen ME
A scribe will assist my little boy with his testing
He can think more effectively with his little hands resting

Break down his assignments into smaller units
How the heck will his teacher do this with 25 other students?
Not to mention the behavior chart with rewards they suggest
To encourage my boy to always do his best

A slant board, weighted pencil, wiggle seat and lap pad
At school my son looks like he's starting a new fad
Make Jack repeat the information he heard
Don't you get it?  He really wants to talk about a bird!!!

In the frustration mommy feels she isn't alone
The staff wants to help but resources are dry as a bone
So I fight, and they fight and we hope for the best
Knowing the battle for more funding will be the true test

When I feel like screaming, I let the advocate do the talking
Because if I said what I wanted, they might send me walking
I try to stay calm, after all this isn't my first time
My kids are 3 and 5 and this is IEP meeting number 9!

We'll make it through this day and move on from this meeting
And pray that my son excels with preferential seating
As a mom of a special needs kid this is the dance
Working your butt off to give your amazing child a chance

So sleep will elude me tonight there's no doubt
I'll dress up in the morning even whip the makeup out
I'll advocate for my son and when it's all over
I'll pass out in my latte then get under the covers
On Friday we'll start to implement all of these plans
As I constantly remind myself that my baby is in really good hands

Yep, I went there