One year ago today

One year ago today, we first heard the words, “Your son has PDD-NOS”.  My response, “What is that?”  The psychologist replied with a single phrase that shook me to the core, “It’s on the Autism spectrum.”  I felt as though I was living on a planet inside of a snow globe and someone shook it as hard as they could.  I wasn’t sure which way was up, what day it was, who my child was or who I was.  All I knew was, with that one phrase, my life would never be the same and that moment would be a pivotal turning point.

I received the word by phone while at work in my office.  I tried to listen and soak up as much information as possible, but part of me was so shocked that I went numb – and then broke down completely.   My boss told me to go home and take care of myself.  I’m so thankful that I work in a flexible, kind, understanding and human office.  It has made all of the difference over this past year.  I went home on that bright, warm September day, promptly hugged my son and stared at him, trying (unsuccessfully) to reign in that powerful wave of emotion.  We decided to go to Union Square Park so we could be together as a family and K could have some fun.  As we pushed him on the swing, I remember thinking, he is the same person now that he was when I left this morning, but he seems different.   At that same moment, my husband said the exact same thing. 

Autism.  How was that possible?  How could I possibly have missed that?  What did I do wrong?  When could we catch a break?  Wasn’t it enough that we lost Dashiell and were deprived of a “normal” pregnancy, but now we’d never know what being a parent to a “normal” child would be like?  What will happen to him when he gets older?  And then, I thought, “Thank God it’s not cancer, or some terminal illness.  We can deal with this.”

Looking back now, those thoughts seem selfish and ridiculous.  I wouldn’t trade Kannon, quirks and all, for anything.   The truth is, I went through a grieving process.  I think I had to trudge through the depths of despair in order to come out fighting.  I now realize that the conversation with that psychologist was a real blessing.  I embrace the label of “autism”.  That label has enabled us to provide Kannon with outstanding care.  The progress he has made in less than a year (he didn’t really start therapy until November 2011) is astounding.  That label has given me a deeper understanding of who my child is.  It has given me patience and understanding when he gets overwhelmed or struggles with transitions.  Before, he was just a tough kid, now I get it.  Now, I understand why he needed to constantly be bounced on the exercise ball as an infant.  I understand why he always needed to have a white noise machine.  I understand why he knew his letters by 18 months and was reading by 2. 

I also understand the answer to the question, “why me” that I asked myself repeatedly in those early days.  The answer is because I can handle it.  I have the wherewithal to be able to negotiate this ridiculous process.  I am blessed with a beautiful, warm, gifted child with a magnetic personality.  I am blessed with the best husband anyone could ask for.  This has only brought us closer as a family and cemented my husband and I as a team.  I also have the great fortune of having had arguably the best mother in the world.  Her example is emblazoned on my brain.  She may have died 13 years ago, but I think of her every day and wonder what she would do.  The answer to that question largely guides my decisions and there is no question that she is here with me.  This is not to say this has been an easy year.  It hasn’t.  At times, it has been downright miserable, but even in those moments, I need only look back to one year ago and see how far we come.   

Today, as I write this, I am filled with hope and gratitude.  In this short year, Kannon:

-          Has gone from eating nothing but pureed baby food to cooking and eating just about anything

-          Has enjoyed buying new shoes (before, when he would try on shoes, he would scream like we were cutting off his feet)

-          Largely stopped scripting his speech (it still happens, but much less)

-          Started connecting with peers

-          Started engaging adults and children in our building and on the street

-          Started sleeping through the night

-          Transitioned beautifully into a new school (one year ago, it took over 2 months and a LOT of tears)

I am so thankful to his wonderful therapists, his school last year, his developmental pediatrician, his nutritionist, his neurologist his geneticist, his new school and most of all, my husband.  With this incredible team all working together Kannon’s potential is unlimited.  I will be one of the driving forces to help be right there to help him reach that potential.  All I can say is watch out, world.  My child is going to make a huge and positive impact on this world!

How did we get here? (Backtracking a little)

You may have read the bus nightmare posts and/or the school search posts, but so much happened in between.  I wanted to post a "brief" summary of how we landed where we did (at YAI Gramercy).   

I should preface this by saying that when you start to look for schools in CPSE, the same few names always come up as the "desired" schools and Gramercy is definitely one of them.  (we're lucky to be there!) I should also say that no two children are alike.  Just because some schools were not for K, doesn't mean they would not be a great place for another child.  This is purely a chronicle of my experience with the school search.  My hope is that it will be helpful to another parent looking for information about these schools or about a CPSE search in general. 

Our search for placement really began in January, although it feels a bit like a lifetime ago.  K was in early intervention for a blink (5 weeks), so when we had his IEP meeting, everything was very new to us.  Our perception of his needs definitely changed between diagnosis and today.  I imagine that is not atypical, but the timing was unfortunate.  

We looked at a LOT of public options.  Unfortunately, there were very few options for his IEP recommendation. (an integrated setting of 15:1:2).  He stayed at CP Kids until the end of August with his SEIT (our angel).  I can't say enough about the teachers there. They really went above and beyond for us.  They were extremely accommodating and have even followed up to see ho K is doing at his new school. 

Initially, I was hesitant to look at any non-integrated options, but as I got over the label of a special school, I realized that perhaps a special school would be great for K.  I went to the open house at the Child Development Center at the behest of one of his OTs.  I was blown away and it immediately became the front runner for me.  The setting is an 8:1:2 in a fantastic brand new facility.  Each classroom has it's own team (teachers, social worker, OT, PT, SLT) complete with an observation booth with a 1 way mirror.  They were very nurturing and the vibe was very calm and warm.  When I left,  I felt strongly that it was the place for K.  

There were a few issues at play:
- we had to see if CDC thought he'd be a good fit
- we wouldn't find out until very late (early May)
- we would need to change his IEP pretty drastically

I also looked at YAI Gramercy, which although was not anywhere near as nice of a facility, K's SEIT felt it was a better fit for him.  It also seemed more like a regular public school.  Still, my gut was screaming for CDC. 

We also looked at the following schools and these were my impressions as far as K was concerned:
-Gillen Brewer: children seemed to be lower-functioning than K, but the school was very impressive (also, by the time I toured in March, all of the spots were taken)

-Central Park West Early Learning Center: teachers looked like they were in jail, kids didn't seem happy and the director was very "new york" to put it nicely.  She also ended our tour with a story about how a teacher had lost a child in central park for a few minutes the year before and was fired.  Huh?  We did not apply there.  It was a shame because it was so close to where I work. 

-Kennedy Child Study Center: kids seemed lower-functioning, facility was awful, but staff was fantastic

-New York Center for Child Development:  kids seemed lower-functioning, facility was awful, but staff was fantastic.  I really liked the vibe, but it was clearly not for K. 

In the meantime, I also looked at some private options: The Quad School (small integrated classes for gifted kids with special needs) and Stephen Gaynor (as our advocate put it "the Bentley of schools").  

Initially, K was accepted to the Quad and Stephen Gaynor, but rejected from all public options (except CDC where he was wait listed).  The Quad came first and acceptance was contingent on us keeping his SEIT.  They even offered a 25% scholarship, but it still would have cost close to $18K, which we do not have!

The feedback from all public options was that he was too bright to be in the more restrictive classes, but needed too much attention to be in the larger classes.

Then came Gaynor (oh Gaynor!).  The whole process of admission to Stephen Gaynor is incredibly opaque.  There is a $150 application fee (which they very graciously waived) and you have to apply before they will let you in to see the school.  We did apply on a whim.  When we actually saw the school, we were blown away.  There was no question in our minds that it was the place for him.  Unfortunately, it made the Quad look like pocket change.  The tuition at Stephen Gaynor was $49,000!!!!  I will say you get what you pay for.  The school is incredible. 

Much to our surprise, K was accepted at Stephen Gaynor.  We met with two lawyers to discuss our prospects for suing.  Both thought that we had a strong case.  The second was recommended by the school and had never lost a case at the school.  We were all set to go and then.... YAI called with a spot that had opened up. 

It really took the wind out of our sails.  We knew it would weaken the case, but we could still fight.  The lawyer was convinced we would win.  Because the lawyer had such a strong connection with Gaynor, it felt like there were all kinds of side discussions happening.  It was big eye opener.  
Ultimately, we were accepted as a Connors Case (a rarity).  However, we would have had to sign a document saying that if we lost, we would be liable for the full tuition.  The lawyer did not think that would happen, but did confirm that they could "come after us" for the money.  It was enough to scare us enough to go with YAI. 

I agonized over this for weeks.  If I'm being honest, I still feel as though we missed out on a huge opportunity.  However, in the midst of all of the decision making, I was able to connect with a special needs advocate.  They suggested that by going with YAI, we would not be locked in to Stephen Gaynor for kindergarten and we'd have guidance through the process.  The biggest fear about Gaynor for me was what if it wasn't the right fit.  What then? Still, it was very rough and still bothers me. 

So, we were all set to change the IEP to put K in a 12:1:2 and CDC called.  They let us know that they were trying to get a 6th classroom.  They expected to get approval by late July, possibly late August and when they did, K was in!

In the middle of all of this, I had sent 3 letters via fedex to our new CPSE rep (since we moved in December, we are now in a new, and much worse district).  No answer.  Radio silence.  I left 3 voice mails, as well.  No response.  I didn't push too hard.  I was hoping that CDC would call and we'd just be able to change the IEP for them. 

By early August, YAI called to ask if we had our IEP meeting.  I explained that we had tried to reach our administrator, I had proof of delivery, but nobody ever called me.  They were able to reach out to schedule the IEP meeting for August 9th.  (The school closed on August 10th!!!).  

The Monday before the IEP meeting, I got a call from the district admin.  She wanted to work out the details over the phone.  The most important thing to us was the ability to keep K's ABA/SEIT (our angel).  I explained the whole CDC situation and the admin blew up, "You just want him there because they put kids in private school. I know why parents like that school."  I said, "Let me stop you right there.  We were in position to sue for placement at Gaynor and we dropped it as soon as the YAI offer came in.  We have a strong preference for a public option."

I think with that, I was able to win her over.  She asked me to strike a deal.  She told me that, if I accepted the YAI placement then, she would give us a dual recommendation.  With that, we were able to secure 8 hours a week with our ABA/SEIT, 2 outside OT sessions and 2 outside speech sessions.  This is in addition to the 2 OT, 2 PT and 3 speech in school!  This probably means nothing to a non-NYC special needs parent, but when I tell fellow parents here what we have, their jaws drop.  

The kicker:  CDC offered placement on August 14.  I suppose everything happens for a reason.

Overall, it was worth it.  So far, K loves school and I think we probably made a good choice.  I wish the school was a little more parent friendly.  I've only met the teacher once and we only have communication via a little notebook that goes back and forth. His teacher does provide a little letter detailing what the class did that day, which we appreciate.  The parent community is also very tight-knit which is really nice. 

As for the bus, we have a new bus company.  The driver is lovely, as is the matron, and they both speak English.  The company answers the phone, too!  They have yet to be on time, but I'm trying to be patient while they get the kinks worked out.  His new pick up time is much later than before.  

He is adjusting well, although he is super tired from school and therapy.  I can't wait to see how he grows this year.  

Now, we're on the kindergarten train.  We never got a break, really.  Although I'm very tired, the upside is, I'm still in fighting mode.  We started the neuro-psychological evaluation last week.  I'll write about that another time - it's another lovely perk of having to deal with the NYC school system and this extremely wasteful, screwed up special needs set up.  

The bright spot of all of this - K is happy.  THAT is really what matters most to me!

The bus issues continued

I wish I could say we had resolution, but no such luck.  After one day, the bus showed up nearly 1/2 hour early today.  I've been told that the Office of Pupil Transportation is at the school this morning and that they are going over all the routes yet again.  We'll see...

Dear Mr. Scarpa,

I was hoping that I would not have to write to you again, but it appears that we still have a bus issue.  I've seen the papers and I realize that I am not the only person, which frankly is more troubling than if I was a singular case.

Mark Jacoby called me on Friday to input my son, Kannon Peters (id# XXXXXXXXXX) into the system.  He told me to check the online system over the weekend to clarify the pick up time and route, as they were revamping this over the weekend.  I checked repeatedly, and he still was not showing up.

On Sunday evening around 6:30pm, we received a call from the bus driver giving us his name, cell number and pickup time of 7:55am and route number (XX X-XX).  This is still potentially a 1hr 20 minute bus ride, but it's certainly better than the 2hr 15min we were facing last week.  Yesterday, the bus showed up right on time.  My husband met the bus at the school and noted that it arrived at 9:09.

The way back was a different story.  Kannon did not arrive home until 3:56.  School ends at 2:15, so this would be close to 2 hours on the bus.  The driver explained that the school took a lot of time to load the children onto the bus and asked us to be patient as they get the routine down.  Although this seemed extremely long, we understand and are willing to keep trying for a few days until the kinks are worked out.

This morning as I was leaving the house at 7:29, our phone rang.  It was the bus driver who simply said, "the bus is outside".  Kannon was still in his pajamas finishing breakfast.  We had planned to wait in our lobby from 7:45 as we did yesterday.  The bus arrived a full twenty-six minutes early!  The driver asked how long it would take us to get ready.  I find this to be outrageous.  Even if the bus arrived at school early, they do not start receiving children until 9am.  That is a minimum of 90 minutes, in borough, on the same side of the city a straight 60 blocks away.  We are not in Riverdale or in Bergen Beach.  We are in Manhattan below 96th! 

26 minutes to a toddler is tantamount to a lifetime.  It may not seem to bad to adults, but frankly, it seems long to me too.  I can understand if they arrive 5 minutes early, but to ask us to have our child ready a full 1/2 hour prior to his pickup time is ridiculous. 

The driver said they were early because so many kids were not riding the bus.  Fine, then start your route later, or wait.  Don't expect me to shove the rest of my child's breakfast down his throat, brush his teeth, get him dressed and out the door at a moment's notice.  Further, I'm sure that every other child on the route was not ready 1/2 hour early, either.

The stress that the busing situation has caused is quite literally making me sick.  You are risking parents' jobs by having these last minute changes, as well, not to mention the time spent on the phone during the day.  The worst casualty of all of this is the children.  Children with Autism thrive on consistency and routine.  What may seem like a small change to you can upend and entire day for a child with Autism.  The fact that the bus companies, the board of education and the drivers do not understand this is astounding.   My child was very upset that he couldn't take the bus this morning.  Great start to the day.

I expect to hear back from someone this morning.  I can be reached at 212-XXX-XXXX until 3:30pm today.  I will be calling Mark Jacoby directly and will do whatever it takes to have this resolved.  I would very much appreciate help from someone that can actually deliver, not just make empty promises.

Thank you,

Allison 

an hour after this email was sent, I recieved the following response:

Hi Allison – sorry for the delay, but we are working to straighten out the transportation at Grammercy.  Please let me know if you don’t hear from someone within the next couple of hours. And thank you again for your patience.

Alex Robinson

Alexandra H. Robinson, M.Ed., CDPT

Executive Director, Office of Pupil Transportation

New York City Department of Education

44-36 Vernon Boulevard - 6th Floor

Long Island City, New York 11101

Bus nightmare

I'll post more details about how we got here, but Kannon started at his new school, YAI Gramercy, on Wednesday.  The good news is that he loves the school and really looks forward to going each day.  The bad news is that the NYC DOE has changed the bus system to "regional busing" which has caused citywide problems.  I just wrote the email below to the Manhattan borough president.  Hopefully it will get someone's attention.  Rather than re-hash the entire story here, I'm posting the email below with the details.   I'm sure things will get worked out soon and the school has been great about everything.  It's not their fault at all, but they have been wonderfully helpful.  I'll also post a little about his school, the decision to enroll him there and our IEP meeting later.  I can tell you, I will be having a giant glass of wine tonight!

To Whom it may concern:

I am writing to you with an extremely confusing and distressing situation.  My son, Kannon, (ID #XXXXXXXXX) started at a new preschool (YAI Gramercy) on Friday.  We were thrilled when he was accepted to the school.  Initially, YAI and all of the other public settings we applied to had rejected him.  The only places that accepted him were private schools for special needs children with above average intelligence.  We were all set to start legal proceedings when YAI called with the offer.  We jumped on the chance, as we had a strong preference for a public setting.  We were also looking forward to Kannon being able to build some independence by riding the bus.

At the school orientation, we were told that the school system had switched to regional busing and that we should be contacted by the bus company, Consolidated, directly "right before school starts".  We waited all day Tuesday for a phone call as directed.  Finally, I called Consolidated at 4pm.  I was told that the drivers were making calls from 3pm until 6pm and to call back if we had not heard by 6.  Since nobody called, I did call Consolidated back at 6pm.  It took them a very long time to find my son's name.  Finally, she told me his pick up time was 7am.  I was outraged, as we live on 94th and Columbus.  His school is a mere 60 blocks away at 34th Street and 10th. My child has autism and is 3 1/2 years old with a dual recommendation for outside services.  No 3 year old should be on a bus for 4 1/2 hours a day, especially when their actual school day is only 5 hours and especially when you have a special needs child with attention and sensory issues.  The woman on the other end explained that she was customer service and to call back at 6:30am the next day to verify the information with dispatch.

When I hung up with Consolidated, I immediately, sent the attached email to the office of pupil transportation and asked that someone contact me the next day. 

I called on Wednesday morning at 6:30am, less than 3 hours prior to the start of his first day of school.  This time, I was told that there was no child by that name in the system.  They could not find him by name, birthdate or by id number.  They told me that the school never gave his information to OPT and that must be why they did not have him in the system.  Although I suppose there could have been a clerical error in the process, this was blatantly false.  Needless to say, we had to take him to school ourselves. 

Around 10am, I received a phone call from Hattie Thomas at OPT.  She asked that I call her back to discuss the situation.  Unfortunately, the number is not in service (718) 482-6976.  I called the Office of Pupil Transportation to try to reach her.  They also tried to find Kannon in the system by name, ID number and birth date and ultimately told me that he was not in the system.  I sent email to the general OPT address and Hattie called me right away. She was very apologetic and helpful.  She assured me that she was working to resolve the situation to the best of her ability. 

Yesterday morning (9/6) out of curiosity, I did wait to see if a bus would show up.  I waited from 6:50 until 7:45 and no bus ever came.  This provided further confirmation that there is a major breakdown of communication going on. 

My husband spoke with an administrator at the school who informed us that our CPSE district rep, Mari Jo Fisher, had neglected to contact the "appropriate people to let them know that Kannon was approved for busing, which is why Consolidated does not have your info but OPT does."  Upon leaving the school, my husband called the CPSE office and asked to be connected to Mari Jo Fisher.  The first voicemail he reached was for someone else.  He left a message there just in case and then called back and asked to be connected again.  He did indeed reach Mari Jo's voice mail that time and left a message.  We never heard back from her. 

This morning, as I was walking out the door to go to work, our phone rang.  There was a woman on the other end who asked if I was Kannon's

 mother.  When I replied yes, she said, "the bus is here."  I was in utter disbelief.  I explained that we have never received a call with any route info, pick up time or driver information from consolidated.  Unfortunately, she did not speak English well enough to have a phone conversation.  She handed the phone to the matron, who also did no speak English well enough to have a phone conversation.  I asked them to wait a moment and went outside to speak with them in person.  They were two lovely ladies who appeared as confused and I was.  I explained again that nobody had ever called us with any pick up time, route number, or bus information.  They told me that his pic up time is 7:40.  I still find that insanely early, considering I could walk to the school and back in that amount of time.  The more concerning thing is the utter lack of communication.  I'm sure that you are a reasonable person and understand why a parent would not blindly put their child on a bus with two strangers and no other information other than their word. 

I tried to call this morning to lodge a complaint and once again, I was told that my son was not in the system.   If you can't find my son's computer record, how on earth am I supposed to entrust his care to you to ensure that he gets to and from school safely?  If Consolidated can't even take the time to make a phone call and just assumes that a parent psychically knows that a bus is coming, I can't imagine why the DOE would EVER use this company. 

This entire situation has destroyed my faith in the CPSE system.  There are so many outrageous issues here that I don't even know where to begin.  One of the reasons we decided to go with YAI was for the convenience of bussing.  That "convenience" has been nothing short of a nightmare.  Secondly, we are in the same borough as the school and a direct 60 blocks north of the school.  We had asked approximately what the bussing times were like last year and we were told they were around 45 minutes to 1 hour.  We understand that these were not set times and that there could be some variation, but to go from that to 1 1/2 to 2 hours, double the time, is ridiculous.  It's not as if we live in Brooklyn or Queens and are coming into Manhattan.  We live in Manhattan, and not even Northern Manhattan or Inwood.  We live below 96th Street and the school is in midtown!!!! 

I can't believe that anyone with a basic understanding of toddlers, let alone special needs toddlers, would ever expect them to endure a 3 to 4 1/2 hour commute each day, attend 5 hours of school, and receive additional therapies outside of school.  That would be impossible for most adults, let alone a 3 year old.  These buses are not carrying cargo or delivering supplies.  They are carrying children on their way to school to learn.  A lengthy bus ride for a child with sensory and attention issues could very well undermine the purpose of school.  If children are worn out from a long bus ride, how can they be expected to learn to the best of their ability?  How are they supposed to be mentally alert and ready to go for therapy sessions?

Further, how could you reasonably expect to a parent to entrust the most important thing in their lives, their child, to a company that can't bother to make a simple phone call.  Parent should be provided with a specific driver name & contact number, matron name & contact number, route number, detailed route information and a bus number.  I completely distrust consolidated at this point. 

I sincerely hope that our horrible experience thus far is unique, but from what I've heard from other parents, I am quite sure that it is not.  We have heard people say that they never received a call, buses haven't shown up, one child was on a bus where neither the driver nor the matron spoke English.  You need to understand that many of these children have communication issues.  If the drivers and matrons struggle to speak with parents, it's impossible to think that they would be able to handle 16 children with communication issues. 

I sincerely hope that you will take a hard look at what you're doing.  Undoubtedly, this ridiculous regional busing was to save money.  You may be saving money, but it is at the expense of the children's well-being, health and education.   Heads should roll for this. It is inexcusable that the greatest city in the world is failing the children that need these services the most.  Not to mention, the burden and stress that is placed on parents. 

I expect to hear back from you with a response and I also expect someone from Consolidated call me with Kannon's details route info, route number, driver and matron names and contact information. 

Thank you,

Allison