Friday, September 7, 2012

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

Sunday, July 29, 2012

A little sidebar

This post has nothing to do with what I usually write about.  This is pure indulgence for my sisters.  I received the email below from my youngest sister in 1998.  She was 16 anscrazy about the Backstreet Boys. My mom, god rest her soul, was apprehensive about letting Ashley go to stalk the group at the hotel they would be staying at while in Syracuse.  To date, this is the best email I have ever received and it still makes me laugh. Enjoy!

From: AKM100@aol.com [mailto:AKM100@aol.com]
Sent: Monday, August 24, 1998 9:03 PM
To: alligirl@usa.net; jmayne@ntca.org
Subject: PLEASE HELP ME!!!!!!

Allison, and Jennifer-

        I need you to do me the BIGGEST favor... on SUnday night is the Backstreet
Boys
concert, and my friend's mom found out where they are staying. We have a
reservation, and EVERYTHING, but mom, and dad aren;t gonna let me go. PLEASE
try to persuede mom ALlison. I swear- i live my life for this concert, and if
i met them...i could die happily the next day. let's say i get hit by a truck
and die on the 31st- my life would be whole if i met them... if i don't meet
them- and i die- my life will be incomplete and sad...NOT TO BE PESSIMISTIC
about the death thing- I'm just trying to make a point. I NEED TO GO!!!!!!!! I
have been crying for the past 2 nights. I mean my friend's mom is gonna be
with us IN the hotel room ALL night. Mom thinks we're gonna be loud, and
rowdy- but we're not ALlison... we want to give these guys a good impression
like we're mature. When we meet them, we want to be composed, and treat them
like normal people...because they are. I try to get mom to understand this-
but she refuses to believe me. WE're NOT going to be loud, immature, and we
are NOT going to run around the hotel all night either. WE just HAVE to meet
them...heck I have to meet them!!!!!!!! So guys- PLEASE try to convince mom-
if you do...i will be in debt to you my WHOLE life, so PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE,
PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE, PLEASE try to help me
out here allison, and Jennifer!!!! I NEED YOUR HELP!!!!!!! I'm counting on you
guys- mom trusts you... especially more then me. So PLEASE try, and convince
her. Thank you guys! I LOVE YOU!!!!!!!
Love your loving sister who is a devoted Backstreet Boys fan,
Ashley k. Mayne

Monday, April 30, 2012

The Zen of Weight Watchers

I joined weight watchers in October of 2010.  My dear friend, Tai, called me and told me that she had just joined.  (thank you, Tai!) They were having a special and maybe we could try together.  I bit the bullet and joined (very half-heartedly, I might add).  I had already lost all of my pregnancy weight, but was still morbidly obese at 238.2 pounds.  I made myself lose 5 pounds before I went to weigh in for the first time.  Looking back, that seems so silly, but I was ashamed.  I went to that first meeting on October 5, 2010 and really learned how to do the program.  Shortly thereafter, I re-injured my back and it was severe.  I ended up having my second back surgery on November 19, 2010.  in spite of all of that pain, a fire had been lit.  I marched over to the weight watcher center in my walker to weigh in every single week.  I learned to be accountable and take responsibility for my weight.  

As soon as I was able to sit for an hour, I started going to meetings.  I went with quite a bit of judgment, skepticism and trepidation.  I found a leader who I liked and went to meetings weekly on Wednesday mornings.  Once I went back to work, just before Christmas, I had to find a new meeting.  I chose the 8:30am Saturday meeting.  My leader, Robert, like most weight watchers, has had a life-long struggle with his weight.  He is a platinum-haired, fabulous, kind, funny character who is very easy to relate to.  He makes each meeting an event.  Since January 2011, I've missed maybe 4 meetings (usually due to work).  Needless to say, I drank the kool aid and I'm a believer.  

As of this past Saturday, I've lost 80 pounds.  I'm less than 3 pounds away from being a "normal" weight for my height.  More than the weight loss, I can honestly say that I've found a particular kind of peace that I don't think I've ever known before (at least not in the same way as I am currently experiencing it.)  I've formed bonds with several members of the group.  I find inspiration in those lifetime members that come each week and share their stories.  I enjoy supporting my fellow ww members and sharing my stories.  That hour each Saturday morning has become a kind of therapy for me.  

This past Saturday, I was really jonesing for a meeting.  I had missed the 4-14 meeting because of the flood and our trip upstate.  I missed last weekend, since I had to work.  I arrived early as usual, got my Starbucks and reconnected with my ww pals.  The topic this week was about taking care of yourself and being a friend to yourself first.  It was very timely, considering my foul mood over the past week.  

Sitting through that meeting, I realized how quickly and willingly I will congratulate and lift up people around me.  I'm a damned good cheerleader to everyone - with one glaring omission - me! Why is that?  Why am I so quick to forgive and support others while I judge myself so harshly.  I suppose many of us do that, but I have made a conscious choice to be sure to celebrate my successes.  I start today by stating that I am proud of the changes I've made since I joined weight watchers.  

My weight watchers journey has been about so much more than weight loss.  I found my fire again.  When I walked into Banana Republic last week (I haven't been able to shop there for over 5 years, since they only go up to a size 14.  When I started ww I was a 22) and tried on a size 8 dress, I didn't feel like a fraud as I had the first few times I walked into that store. I looked in that mirror and I was proud.  I was just happy.  I was able to congratulate myself without thinking about how much more I want to lose, or about how I wish I could change x about myself.  I just felt a profound love and respect for myself that I'm not sure I ever have before. 

I can't imagine how I'd be able to shoulder the burdens we have been faced with over these past months had it not been for these internal changes.  Weight Watchers has been a saving force in my life.  I may have a lot to contend with, but I know that I can handle whatever comes my way - and I know things could always be worse.  I'll continue to go each Saturday.  I may not be an official lifetime member yet, but I will say that I'm a member for life. 

Tuesday, April 24, 2012

What else?


Let me preface this by saying that I'm having a moment of feeling very sorry for myself.  I'm usually very good about keeping perspective and always seeing the upside, but I honestly feel like I've been pushed to my limit. 

Two weeks ago today, I went to soak Kannon's soiled pants in the sink.  Kannon came into the bathroom and I got distracted.  I thought I had turned off the sink, but I guess I hadn't turned off both handles.  20 minutes later - major flood that destroyed our floors that were installed in December.  It destroyed both bedrooms, the hallway and half of the living room.  BAD.  5 hours later, as I was still panicking and trying to dry the floors, I was about to go to sleep and stepped into the kitchen into a giant puddle of water.  Yes - another flood.  Our dishwasher had overflowed and ruined the kitchen floor, dining room floor and remaining living room floor.  At least we caught it with enough time to prevent damage to our downstairs neighbor.  

Our insurance is mercifully covering both instances, but we had so many fans and dehumidifiers in our apartment that we had to flee to Syracuse.  We stayed in my dad's house (but he and Barb were in FL, so we didn't even get to see them).  We returned on Sunday, 4-15 and stayed in Queens that night.  A woman I work with graciously has given us her 1 BR apartment to stay in free of charge while repairs are happening.  The next day, I dropped K off at school, went home, met with the water mitigation people, who confirmed that everything was dry and tried to rearrange the furniture to have some sort of normalcy for Kannon.  It's really times like these when I realize how much he truly thrives on routine. 
We have the old ugly tiles again, covered by paper and approximately 70  one and a half inch holes in the wall.  We also lost a 12' x 2" piece of sheet rock in the living room and two large chunks of sheet rock behind the stove and the dishwasher. 

That Tuesday, Kannon had a play date (read "interview") at the Stephen Gaynor School.  Up until that point, the admissions process for that school had been rather off-putting.  We had to submit a huge application with a tremendous amount of information, including evaluations from all of his therapists.  He had also already had an observation at his current school by the head of admissions.  After he passed those two checks, he was scheduled for a "play date" with a speech therapist and OT from the school.  Needless to say, that did not go so well.  He was not himself, thanks to my stupidity and leaving the water on.  We got a call shortly thereafter asking to speak to Kannon's SEIT and asking if we'd be willing to bring him back in with Stephanie.  (of course we are).  She is on vacation this week and we haven't even started the work yet, so who knows when this magical visit will take place.  All of that said, the school is incredible and in my opinion, by far the most appropriate setting for Kannon.  The price tag, not so much, but  at this point, we may just sue the district for placement.  (not sure if I mentioned this last time, but YAI essentially said he's too gifted to be in the special class they have next year and needs to much attention to be in the integrated class). 

Backtracking - the only school (other than his current school) that he was accepted into was the Quad School (an integrated school for gifted children).  It would have been perfect, except for the $23K tuition.  He was offered a 25% scholarship, but we just couldn't swing that.  That kind of setting would be perfect for him - small, lots of attention and with other brilliant minds.  He is a bit of a conundrum, which is making placement incredibly difficult.

This past Saturday, I had to work all day and as I was leaving, I checked my messages.  Glenn had called in a panic.  We received a letter from the IRS saying that our 2010 returns were wrong and that we owe close to $5,000.  It's incorrect (I had filed an amendment, which was not reflected in this letter), however, there was a dividend payment from a stock which I don't own.  Long story short, someone used my ss number, maiden name and former address (which I had moved from 5 years earlier) to open an account in 2007.  Now, on top of everything else, it looks as though I have some identity fraud to deal with.  What did I do in this life that was so horrible?   I don't understand why. I really don't.  I just need to catch a break.  The last 5 years have been more to contend with than anyone should ever have to and I'm at my breaking point. 

It gets better - so I also had to go to an ophthalmologist yesterday. When I had my eyes checked just before my birthday, they couldn't dilate me, since my "angles are too narrow".  Also, my left eyelid has been droopy and I've been feeling a weird pain/pressure in my left eye area.  She couldn't find anything wrong with my eyes, but wants to do some blood work to see if she can figure out what is going on.  If the blood work comes back normal, I need to get an MRI.  Another f***ing MRI. UNCLE - UNCLE Do you hear me life?  I'm crying uncle!  I can't take any more.  I really can't take anymore.  Please give me a little break.  Please let me feel a day of relaxation.  Please give me  a little taste of normal. 

Today, feeling beaten down, I came into work.  I received a call from our last chance for CPSE placement for Kannon (and my top choice).  He was "strongly wait listed".  Not at all what I wanted to hear.  I broke down with the admissions director on the phone.  I'm just so damned frustrated.  If he were a 3 instead of a 4, he would be in.  They only have three spots for 4 year olds this year.  So because he was born in December, he gets the shaft.  We were too late for this year, since he wouldn't have been allowed in any programs until he turned 3 anyway and now we're screwed next year since all of the programs for 4's will be filled with their current 3's population.  I'm just ready to lose it.  I feel like I'm failing my child right and left.  If I made more money, I could afford to send him to wherever I wanted.  If I hadn't flooded the bathroom, maybe he would have done better at Stephen Gaynor.  If I hadn't tried to do my own taxes last year, we wouldn't be in this stupid IRS mix up situation.  Someone give me a do over.  Please.  I just want someone to be able to tell me honestly that Kannon will end up in the best possible place for him next year.  At this point, it doesn't look like that is happening and I'm heart sick.  I don't know what else to do except maybe scream or kick something.

Friday, February 24, 2012

The madness of NYC school

It has been a long time since the last post and many things have happened. Briefly:
  • Kannon started therapies (PT, OT, Speech and ABA) in October and has progressed by leaps and bounds. He was only in early intervention for 6 weeks, thankfully. His speech therapist canceled on us last minute just over 50% of the time!
  • We had Kannon's IEP meeting with the district. Someone was watching over us and we were assigned to a wonderful district rep. He agreed to an increase in services. Now, Kannon receives Speech 5 x 30 minutes, PT 2 x 30 minutes, OT 3x 45 minutes and ABA/SEIT services for 20 hours a week - plus he is in school for 19 1/2 hours a week. He's a busy guy. His IEP recommendation was for a special class in an integrated setting with no more than a 15:1:2 ratio.
  • Although we were initially resistant to ABA therapy, his ABA/SEIT has been a complete angel. She has done more for Kannon than all of the therapies combined. She is even going to open houses with us to determine the best options for Kannon's placement next year.
  • We moved! On December 19th, we said goodbye to Chelsea and hello to the Upper West Side. Although the months leading up to the move were very stressful, it was so worth it. The building is great, apartment is big, residents are friendly and Kannon really flourished having his own bedroom.
  • We have learned A LOT about autism. I think I've learned to embrace the label and be proud of it in a way. There is such a stigma around that word and I feel bound to educate people.

Currently, we are searching for a school for next year. It is quite clear that Kannon is gifted. His facility for reading and numbers is far beyond his years. It is a very daunting task to try to find an appropriate school. We're trying to find a place where he can receive the therapies that he needs (preferably via CPSE so that we wont' have to pay out of pocket), that will nurture his gifts and understand his needs - AND that we can afford.

New York City preschools are notorious. I highly recommend the documentary "Nursery University" it is a very real look into the world of NYC preschools. It's alternately hilarious and nauseating. Add to that the special needs element and it's a whole new layer of complication.

We have looked at private special ed schools, private integrated schools, private mainstream schools, CPSE integrated schools, CPSE special ed schools and are also considering keeping him where he is. I just wish I had a crystal ball to tell me what the best place for him is. That and unlimited funds to be able to send him. There is a school specifically for autistic children right around the corner from our apartment. The tuition per year is (sit down for this) $100,000! The "cheaper" school, which is 4 blocks away and for various types of special needs is $57,000 per year. We did apply to that school in the hopes of getting financial aid, but the application fee alone was $150. Fortunately, they waived that for us.

We have also applied to a school that is specifically for "twice exceptional children" - children who are gifted, but have special needs. That one is much more reasonable at $28,000 to $40,000 depending on the program.

Perhaps the biggest dilemma as it relates to school is that my favorite CPSE option that I have seen is not integrated. It is entirely special ed with an 8:1:2 ratio. One of Kannon's OTs recommended this place. Admittedly, I was skeptical. Kannon is so bright and verbal that I could not imagine him in a special ed school, plus, that notion flies in the face of what his IEP, evaluators and others have said. When I attended the open house, I was blown away. They are caring, the facility is amazing and the kids were so much more functional than I had pictured. The school did an observation of Kannon and in 20 minutes had him pegged. The catch is twofold: In order to attend the school, we will have to change the IEP. I don't have a problem doing that, so long as there are no long-term implications (kindergarten placement, etc.). Worse, they don't let you know if you're in until late April or early May - WAYYYY past the deadline for other schools. I'm just putting my faith out there and trusting my gut that he will end up where he is supposed to and it will all work out.

As you can imagine, all of this is incredibly stressful. We also started nutritional intervention back in September. As soon as we removed dairy & soy from Kannon's diet, he started sleeping through the night. We have also removed gluten. His nutritionist is wonderful, but also extremely expensive and not covered by insurance.

We saw a developmental pediatrician the day before Thanksgiving. She feels that Kannon will do very well and may outgrow his diagnosis (which many people have told us). Although his educational diagnosis was PDD-NOS, she diagnosed him as ASD with the expectation that insurance would cover more.

PDD or ASD, I don't really care about the label anymore. The blessing of all of this is that I am a better parent. I understand Kannon so much better than I did before. I understand his outbursts, fixation with trains, his constant opening and closing of doors, why he has trouble with transitions, etc. He is communicating so much better. He has always had a large vocabulary, but his pragmatic language has improved vastly. His diet has completely opened up, too - no more baby food! He is potty trained! so much of this is due to his wonderful therapists, especially Stephanie, his ABA/SEIT.

I'd be lying if I said it was all roses. While I choose to dwell on the positives, it has taken a toll. Marriage is not easy to begin with, but with all of the extra stress and the extra financial burden, it is extremely difficult. We are both exhausted, doing the best we can and trying to have a relationship with each other, but it's very hard. Glenn has been going through a lot in terms of his career, too, which just adds fuel to the fire. He is the best father any child could ask for. We all have our issues, though, including me.

Let me preface this by saying that I wouldn't change a thing about Kannon. Not one hair on his perfect little head. He is the joy of my day every day - even when he's not having a great day. That said, I am angry sometimes. After losing Dashiell, I mourned all of the things I pictured he would do - his first day of school, his play dates, etc. When the diagnosis was handed down, it was a little bit like losing some of that all over again. It forced me to recalibrate my expectations. Now, when I think if Kannon's future, although I am 100% certain he'll be fine, I do worry more. What if something were to happen to me. Who would help Glenn? Who would help Kannon? Who would make sure that he didn't eat sugar, that he took all of his daily supplements, that he got to his therapies on time.

I feel very lucky on one hand that it is "only Autism" and not cancer or worse. However, I wonder sometimes why nothing has been easy since 2007 - that horrible year that fundamentally changed who I am.

Now, I try to explain to my sisters the challenges that we face. When I referred to Kannon as a special-needs child the other night, my sister quickly replied, "I'd hardly call him a special-needs child." They just don't get it. I suppose it is unfair to expect them to, but it certainly adds to my feelings of isolation.

Onwards and upwards. I'll post once we have placement for Kannon. I'll post some pictures, too. I plan to keep breathing, keep believing and keep advocating as much as I can for my beautiful, gifted, blonde bubbaloo.

Wednesday, October 12, 2011

Are you kidding me?

I’m not even sure where to begin. It has been far too long since my last entry and our lives have changed in some big ways. We purchased an apartment through the Mitchell Lama program back in July. Yeah! We’re finally moving to a 2 bedroom apartment. In fact, when I first brought Kannon up to show him his room, he immediately ran into the closet and said, “Wow! Look at my new closet!”

We thought we would have moved in my mid-September at the latest, but the place has been nothing but headaches. The floors and ceilings are asbestos – hello built in 1968. Our first unexpected expense was $2800 to abate the piece of the ceiling that was falling down. Cut to mid-August on a very rainy day: I was removing the baseboards when I noticed that the walls were wet. Well, friends, we have a leak in the freaking façade of the building! The worst part of this is that whoever the moron is that lives in the apartment above us has known about said leak for over 3 years. Not only did she never tell the current super, but she also did not tell the building when they did the waterproofing back in JUNE!!!

Luckily, Hurricane Irene brought a lot of rain and shed the light that the leak is affecting approximately 12-14 apartments in the building. Because of this, they have to fix it more quickly. (I use the term quickly very loosely, because as of today, it has not been fixed.) On the bright side, once it is fixed from the outside, the mold experts will be brought in to take care of that issue, the new drywall will be put up and then we can lay our flooring. Tenative move date: November 21, but stay tuned. Consider me hopeful, but doubtful.

Also, our idiot neighbor upstairs flooded their bathroom and the water has damaged our bathroom ceiling. The medicine cabinet is beyond repair. We have owned the place since 7-29 and have already had to file 2 insurance claims. I’m sure we’ll love it once we’re there. It’s on the 18th floor, has a balcony, a view of Central Park and the reservoir, but at this point, I kind of feel like it’s just a black hole that is constantly sucking money that we do not have!

Aside from the apartment, Kannon started school on September 7th. The school was not our first choice, but we could not be happier that he ended up there. For the first day, we were asked to have one parent stay all day. I didn’t want to miss it, so I took the day off and headed to preschool. Kannon was all over the place. He would not stop running around, would not really participate with the group and just wanted to do his own thing.

I started talking to one of the other moms whose child has sensory processing disorder. As she was describing the symptoms to me, it really sounded like Kannon. I had heard of this back in January and mentioned to Glenn that we may want to look into this, but he thought it was silly and Kannon was fine. I ignored my instincts, which I should have known not to do, but hindsight is 20/20.

The mom referred me to her son’s occupational therapist (herein referred to as OT), who referred me to early intervention and another OT. We decided to bite the bullet and pay the $800 for a private evaluation by the OT and also start the early intervention process. I was fully expecting a diagnosis of sensory processing disorder. It explained so much.

Glenn took Kannon to the OT evaluation on 9-20. Kannon fell in love with this woman. He had a great time and had a nice, long nap after his session. My uneducated guess was that he was probably stimulated in the way he needed to be in order to allow his brain to settle down.

We met with the OT the following Monday. She confirmed that he definitely did need therapy, but could not provide a diagnosis. She did say that he exhibited several “spectrum behaviors”. Excuse me? Did she mean spectrum as in Autism spectrum? Not possible! My child is brilliant. He can count well above 100, reads at a 1stnd grade level, has good eye contact, shows emotion. or 2 No way. Nevertheless, we decided to start Kannon with therapy so that we don’t have to wait until the Early Intervention kicks in.

Tuesday, September 27 is a day that I will not soon forget. It was my niece Caroline’s 4th birthday. It was also the day of Kannon’s evaluation by the Early Intervention psychologist. Glenn was to bring Kannon, since I had to work. I asked him to call me once it was over to see how it went. Around 12:15, my office phone rang and it was Glenn. He was still at the evaluation and put the psychologist on the phone to speak with me. Your son has PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. He is very high functioning. OK, what does that mean? The short version is that PDD-NOS is a catchall diagnosis for people who exhibit some spectrum behaviors, but do not fall into the other autism categories (Rhett’s Syndrome, Aspergers, etc.).

I remember feeling as if the world had stopped and everything was in slow-motion. I honestly could not believe what I was hearing. As she went on to describe her findings, she mentioned so many of the behaviors that we have found so adorable: reading, obsession with letters and numbers, repetitive speech, being all over the place, etc. I hung up the phone and sobbed. I had a meeting about 5 minutes later and clearly was not ok. My wonderful boss told me to go home and take the rest of the day off.

As I rode the subway home, my mind was racing. How is it possible that when I mentioned his sensory issues to his pediatrician every single time, not once did she recommend that he be evaluated? How was I supposed to know what Early Intervention is? Why did I not push harder? Why did I not follow my instincts back in January? Why, after all we have been through, is this happening to us?

It’s hard to explain the mental shift that happened that day. I went to work not terribly concerned and I came home looking at Kannon as a sort of China doll who I was afraid to handle. I didn’t want to break him anymore than I already had.

I spent about 3 days feeling very angry and sorry for Kannon and for my family. I heard more than once, “Why did you wait so long?” To those I say (pardon my language), “F*** YOU!” Do not make me feel any worse than I already do. I fought like Hell to get this child here safely. I wouldn’t stand in the same room as a microwave when it was running. I would not set foot in a hair salon for fear of breathing in the chemicals. I would cross the street to avoid second-hand smoke. I did not touch any artificial sweeteners or alcohol during my pregnancy with him. How dare you suggest that I have done something wrong. OK, I ignored my instincts, but that was essentially because of the silence of Kannon’s pediatrician. At this point, I have nothing but anger and disdain for this pediatrician.

If one more person tells me, “It could be so much worse.” Or, “We are only given what we can handle” I may punch them. Of course I know it could be worse. Hello, I already have one dead kid, remember? Am I not allowed to grieve for what I thought my only living son’s childhood would be like? Am I not allowed to be angry? Am I not allowed to feel sad and afraid? I realize that comments like this come from a loving place, but sometimes you just need someone to listen and keep the commentary to a minimum.

So, where do we go from here? Well, since then Kannon has had physical therapy, speech and occupational therapy evaluations via Early Intervention. We are awaiting our official meeting. Early Intervention only lasts until he is 3. We are simultaneously starting the CPSE process. I’m really looking forward to the meeting where my child is officially declared disabled. Isn’t that what every parent dreams of? We need to decide if he will stay in his school or move into an integrated classroom in a special school.

We are also going to see a nutritionist at the behest of the OT. That only costs $395, so hey, why not go every day? We have already eliminated dairy and gluten on our own. We’ve also added an Omega 3 / Omega 6/ DHA supplement. I have to say, he is definitely sleeping better. We’ll also be bringing Kannon to a developmental pediatrician and also need to find a new general pediatrician. I am not setting foot back in that old office. We need to work with Kannon every day at home on his “sensory diet”.

Being the eternal optimist that I am, I need to say that if my child has to have something, I’m very thankful that it is something that we can cope with. Thank God it’s not cancer or some other terminal illness. I’m so thankful that we found the OT that we did. Not only does Kannon love her, but she is working with us to provide us with services we can afford. I’m thankful that he is in preschool at Chelsea Piers. We could not ask for a more supportive environment for him (and us). I’m thankful for my wonderful husband who has made a temporary career of being a stay at home dad for the last year. Although it hasn’t been by choice, it’s great that he is there every day throughout this process. I’m thankful for my very understanding employer, for my supportive family and friends. I’m thankful for my beautiful boy who brings a smile to my face many times each day. I love him with all of my heart and I will fight until my last breath to get him whatever he needs to succeed.

I’m most thankful for the unanimous consensus that Kannon will most likely “outgrow” this and may even lose his diagnosis eventually. We have a long road ahead of us, but we also have every reason to be optimistic. The downside of having a high-functioning child is that it is more difficult to detect. The upside is that getting to a functional place is usually faster and much more likely. In my heart, I know that he is going to be fine. I just need to keep reminding myself to take deep breaths, enjoy every second with him and live each day as it comes. He is still the best thing that has ever happened to me. I have every reason to believe that our family will come out closer and stronger as a result of this. Still, I can’t believe we have one more huge thing to tackle…