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.

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