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 I'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.

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 18^th 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 7^th. 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 1^stnd 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 4^th 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…

Photo Book

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Update

I have been very bad about writing updates. Briefly, Kannon turned 2 at the beginning of the month. He is more and more fun each day. He is speaking in 5-6 word sentences, soaks info up like a sponge and has grown quite a bit. At his appointment on 12-9, he was 27.5 lbs and 35 3/4 inches. His head circumference growth has tapered off, which is a huge relief. All in all, he is doing extremely well!

I, on the other hand, had to have a second surgery on my back on 11-19 and am still recovering, but doing quite well. I was prepared for a horrible recovery ala the first surgery, but this has been much easier.

It dawned on me today that my sister, who will be with me at Christmas is just about as pregnant as I was in Christmas of 2007 when I lost Dash. I love her so much and she always honors Dashiell with some kind of donation in his name at Christmas, but I am honestly dreading the moment that I see her belly.

I realize that this is highly irrational. I have beautiful little guy who I love more than I ever dreamed possible, but I still miss Dash. I will always wonder what my life would have been like had things not gone so wrong. This is the first Christmas we will be with family since that awful Christmas. It is definitely bittersweet. I love seeing Kannon light up when he sees a tree or Santa. The memories and grief just seem to hit at the strangest times and the emotion is just heightened by the holiday.

What is a "Cooqua"?

This is just one of those funny things I have to document so that I won't forget it. Kannon always points to the 2 corners in our bathtub and says "Cooqua" (pronounced Koo-Kwa). It drives Glenn crazy! Glenn has the "cooqua" idea that they are portals to the spirit world. While I do believe there are spirits around us, that seems like quite a stretch. Glenn was completely freaked out the other day when Kannon pointed to it and said "Cooqua, daddy you fall". It makes me laugh and I think the word is cute!

One more funny story from today: We are traveling upstate tomorrow and I've been burning the Wonder Pets to DVD so that we'll have some entertainment for the train. This morning, I was standing in front of the TV holding the remote. Kannon sneaked up beside me, but I didn't see him. When I went to lift the remote, it hit him in the head. I said, "I'm sorry, pumpkin" to which he replied, "NAUGHTY!" I explained that it was an accident and that naughty is when you do something you're not supposed to do on purpose. On the bright side. I guess he knows what naughty is! (I wonder how he ever learned that...)

Trip to the Dentist

Today was Kannon's first trip to the dentist. I was dreading this and so was Glenn. Kannon has always been terrified of doctors and it only got worse after he had his stitches back in January.

I'd been noticing some brown stains on his front two teeth and I was nervous that he may be getting a cavity. I figured that we'd better bite the bullet and go. Luckily we found a kind, gentle and extremely calm pediatric dentist who was wonderful. Kannon was fine until he had to be examined. He screamed during the exam, which I fully expected, but he stopped as soon as the exam was over.

The stains appear to be just stains. Since they are only cosmetic and can be removed later, he just brushed K's teeth and applied the fluoride. We were told to switch over to a nylon brush and to use just a tiny dab of fluoridated toothpaste 2x/day. We don't have to go back for another year!

I was so concerned that he would have a hard time, that I didn't even think to take any pictures. I did laugh when I saw that the goody bag contained floss. We can barely brush his teeth, so no flossing for now.

I have to admit that the whole experience reminded my that my beautiful baby boy is growing up. He's a little boy now, but he'll always be my baby.

Kannon's latest

Disclaimer: I am about to brag here. About 2 weeks ago, Kannon has started counting to 10 and can identify & name numbers 1-10 and 12! I can also identify and name all of the letters of the alphabet (except m and n). He loves to shout out numbers and letters when he sees them in the aisles of stores, on the street, on the subway. (and I do mean shout) He is so proud of himself when he does. Not too bad for a 19 1/2 month old!

Yesterday, he was playing with his squirt toy walrus in the bathtub and actually said walrus, well more like wallwuss, but you get the idea. It's difficult to remember that we have to be extremely careful about what we say in front of him because he is a parrot.

Now, if we could only get him to eat real vegetables instead of purees only...