The last six months have been . . . rough.?
The Board of Education changed the way it handled special services (Occupational, Physical and Speech therapy) without notice to the parents. It was a joke. "It's not a change but we've never implemented it before." So you realize that you are making a CHANGE in procedure right? Ah, legal semantics! Shockingly (not), the new, lowest-bid company was overwhelmed and we had no services. After over a month of phone calls, letters, emails, faxes and court appearances, we got James' services reinstated (and our settlement included a no fault clause to the BOE). Of course, James had started having toilet issues (aka peeing his pants). Luckily, we stayed at the shore and filled our days with gorgeous empty beaches and school on the porch.
Just as we got our guy back on track, Superstorm Sandy came along and "deaded our beach house" (James' apt words). Thank God we left that Monday morning. The wind had a high-pitched eerie quality that it had at the peak of the previous hurricane and this storm was hours away. Not right. We packed up the laundry, James' movies, our precious electronics and hit the parkway. There wasn't a soul on the road. As we sat at the mouth of the Holland Tunnel, Bloomberg announced its closure, but luckily squeaked through. Then we got to the apartment, unpacked, and . . . went out to lunch. Brooklyn was alive and open and surreally calm. We made the right decision. Never lost power or heat or were in danger while our beach neighborhood was under five feet of water. Our neighbors lost their homes. We lost everything but the shell of the house. Our happy community, three months later, sits vacant, lightless and empty while insurance companies drag their feet and FEMA hems and haws about new regulations. Rebuild! No wait, not unless you do this. Oh yes, and this! And we will change the flood map too. Here's a preliminary but we won't finalize until August but it means that raising the house is, pretty much, a must. Do something but we can't help until the reports are final . . .Okay. So my kid is terrified of water now. Every so often, seemingly out of no where, he sobs for his toys, his seashells, his home. James also has to sleep with the lights on and Daddy HAS to be there. When Daddy doesn't come home at exactly the right minute: "Daddy is dead." And he is peeing EVERYWHERE again. Our poor, sensitive sweetheart, Meanwhile, we hurry up and gut the house . . .and it now sits and rots. No money. No guidance. No hope. James needs answers and because I have no idea, he assumes I am "keeping secrets" from him.
Did I mention his Medicaid was cancelled . . . back in August? All word of mouth through his coordinator. Tried to call but his ID number is inactive and can get no information. A live operator told me I can reapply. Could you explain when/how/why James was cancelled? Whatever. Instead I applied for a hearing and it was received. Now, once again, nothing and no one has heard of me or my useless notices and confirmation numbers. Why don't you reapply? And our government is hurting financially. I wonder why. Genius all around. James' coordinator recommended I go to Manhattan and sit in their office until I get answers. Cut me a break. Enough. Neurologist and dentist were lovely but did not help us, diagnose James or even successfully clean his teeth. The psychologist recommended he be put on anxiety drugs to calm him and inure against the violence in his classroom. You see, unfortunately, abusive behavior would be his future and I am hurting him by teaching him to communicate and expect more from life. Consider us cancelled. That is what they wanted, right?
That said (and it is a lot), James can read, type, communicate, add, skip count, draw, paint, cut and paste. He knows what money is and what it represents. He helps me shop and attempts to prepare ingredients for our meals. He has expressed his love for the eight year old next door but who will never like him because he can't talk. He considers talking people "real." He "tells" me all this! James rules and regardless of all this adversity, he is not going back into the dark. He doesn't even want to be there anymore. He wants to be here, in the world, autistic and non-verbal, and in the thick of the action!
The Board of Education changed the way it handled special services (Occupational, Physical and Speech therapy) without notice to the parents. It was a joke. "It's not a change but we've never implemented it before." So you realize that you are making a CHANGE in procedure right? Ah, legal semantics! Shockingly (not), the new, lowest-bid company was overwhelmed and we had no services. After over a month of phone calls, letters, emails, faxes and court appearances, we got James' services reinstated (and our settlement included a no fault clause to the BOE). Of course, James had started having toilet issues (aka peeing his pants). Luckily, we stayed at the shore and filled our days with gorgeous empty beaches and school on the porch.
Just as we got our guy back on track, Superstorm Sandy came along and "deaded our beach house" (James' apt words). Thank God we left that Monday morning. The wind had a high-pitched eerie quality that it had at the peak of the previous hurricane and this storm was hours away. Not right. We packed up the laundry, James' movies, our precious electronics and hit the parkway. There wasn't a soul on the road. As we sat at the mouth of the Holland Tunnel, Bloomberg announced its closure, but luckily squeaked through. Then we got to the apartment, unpacked, and . . . went out to lunch. Brooklyn was alive and open and surreally calm. We made the right decision. Never lost power or heat or were in danger while our beach neighborhood was under five feet of water. Our neighbors lost their homes. We lost everything but the shell of the house. Our happy community, three months later, sits vacant, lightless and empty while insurance companies drag their feet and FEMA hems and haws about new regulations. Rebuild! No wait, not unless you do this. Oh yes, and this! And we will change the flood map too. Here's a preliminary but we won't finalize until August but it means that raising the house is, pretty much, a must. Do something but we can't help until the reports are final . . .Okay. So my kid is terrified of water now. Every so often, seemingly out of no where, he sobs for his toys, his seashells, his home. James also has to sleep with the lights on and Daddy HAS to be there. When Daddy doesn't come home at exactly the right minute: "Daddy is dead." And he is peeing EVERYWHERE again. Our poor, sensitive sweetheart, Meanwhile, we hurry up and gut the house . . .and it now sits and rots. No money. No guidance. No hope. James needs answers and because I have no idea, he assumes I am "keeping secrets" from him.
Did I mention his Medicaid was cancelled . . . back in August? All word of mouth through his coordinator. Tried to call but his ID number is inactive and can get no information. A live operator told me I can reapply. Could you explain when/how/why James was cancelled? Whatever. Instead I applied for a hearing and it was received. Now, once again, nothing and no one has heard of me or my useless notices and confirmation numbers. Why don't you reapply? And our government is hurting financially. I wonder why. Genius all around. James' coordinator recommended I go to Manhattan and sit in their office until I get answers. Cut me a break. Enough. Neurologist and dentist were lovely but did not help us, diagnose James or even successfully clean his teeth. The psychologist recommended he be put on anxiety drugs to calm him and inure against the violence in his classroom. You see, unfortunately, abusive behavior would be his future and I am hurting him by teaching him to communicate and expect more from life. Consider us cancelled. That is what they wanted, right?
That said (and it is a lot), James can read, type, communicate, add, skip count, draw, paint, cut and paste. He knows what money is and what it represents. He helps me shop and attempts to prepare ingredients for our meals. He has expressed his love for the eight year old next door but who will never like him because he can't talk. He considers talking people "real." He "tells" me all this! James rules and regardless of all this adversity, he is not going back into the dark. He doesn't even want to be there anymore. He wants to be here, in the world, autistic and non-verbal, and in the thick of the action!
