It all started way back in September, when the Board of Education changed the way they were assigning related services for special need students. According to the BOE, it always should have been done differently, so no prior notice was necessary. Huh? So James started school without services because the Board of Education decided to bid out ALL the services in NYC and consequently, the winning agency became overwhelmed. Go figure. We were supposed to get a least a phone call. Weeks grew into a month without anything, no letter, no call, no services. Of course the "cessation" came after the three week summer break. Can you imagine what this means to a child who has been getting consistent services since he was two? Now think of the THOUSANDS of children who were affected! My kid? Well, most noticeably, James "forgot" how to use the toilet. At the advice of a cracker-jack mom, we put in for a Pendency Hearing to get his services reinstated while we waited for an an Impartial Hearing to get some official action. The Board of Education was found to be not in compliance and we got his services reinstated until the Impartial Hearing. Then, as soon as I submit all my evidence for the case, I am told that magically everything is closed. James has all of his services, as usual. What? I dropped the case. We are okay until next year.
Blow two struck with Super Storm Sandy. We lost our house and it all got worse. Now James was soiling his pants. He developed a morbid fear of water. It "deaded" his house. Daddy had to go to sleep with him AND the bright, overhead light has to be on. His confidence was shaken and he often cowers, doubting himself. Because I had no idea how or when the house will be fixed, James accused me of "keeping secrets" from him. When David went to work, James would type: "Daddy is dead." Right now the house sits gutted (as every house in the neighborhood). Construction cannot proceed as FEMA has changed the flood advisory in our neighborhood and 9 foot elevation is suggested. So we stop and asked for estimates for a raise and a rebuild. It is incredibly costly. Do we raze the whole thing? ICC grants are available but FEMA's report is preliminary and not to be finalized until at least August. So we sit until August? MADDENING. I can't handle anymore nightmares. And I mean it literally. Sleeping is not fun for me or James. And David pretends.
Oh, and guess what? James' Medicaid was canceled back in August. I am told this in November? You have to reapply. Huh? Many calls and hours later (while my son stims), I ask for another Impartial Hearing. Weeks later, I get a notice that my request has been received. That was Thanksgiving. James' Medicaid Service Coordinator suggests I go into Manhattan personally. No, I am not going. I have been there. You sit for hours. How long am I going to sit and how many places will I have to go and how many people will I re-explain to, without an appointment? All this, with a non-verbal autistic child in tow. . . . to be told when to come back for an official appointment when the issue will be addressed? Of course, my husband could take off a day of work. . . Of course, I could drive to my in-laws in the next state, drop James off and return. . . I use Medicaid to help. This is not helping. After recent events, James needs a rigid structure and not a chaotic schedule.
SO. . .we did nothing. Partially because while James was hospitalized. . . for a febrile seizure? He's too old. For a random seizure? But the EEG and MRI are normal. No seizure but horrendous reaction to a sudden and extremely high temperature? He is okay now and we watch and pray.
Meanwhile, the insurance company about-faced and all gave us all the funds, instead of paying off our mortgage first. This in no small part to the countless phone calls and personal meetings that David somehow found the time and strength for. Shockingly after all this time, we have a serious, let's-get-going, meeting with our builder after Easter! We have decided not to wait on FEMA but go with the new "suggestions." And just as suddenly, we have an appointment at Medicaid to discuss the cancellation - in Brooklyn yet. And while James isn't completely back to using the toilet independently, it is getting better. Almost in all ways, but not yet. James keeps asking why God hates him. We don't do anything "small" around here.
