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…

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