Monthly Archives: August 2014

Up Close and Personal with the Program Officer

So our new baby is just 2 weeks old. We’re also just 4 days away from the start of school, which means an insane dash to deal with the school debacle before the beginning of the semester. 

This translates to me being on the phone with school officials from my hospital room after delivery, as I mentioned in my last post. I fucking hate that I felt it was necessary to make these kinds of phone calls from a hospital bed.

Once I was home and down to 2 Vicodin per day, I began fielding home visits from school program officers. Our advocate says she has never in all her many years heard of school officials coming to parents’ homes before. This is how badly the district does not want us to sue them. 

The latest development in the huge mess is that the program official for our school began going through Mikey’s paperwork with a laser beam. She found numerous glaring errors. Like the early intervention team last year never scanned or uploaded any data into the district computer system. This means in many cases, the only existing copies of progress reports, graphs, or data? Are the hard copies I have in my binder. 

A bigger error: at some point last January, a school diagnosis declared Mikey to be a typical boy with a developmental delay. No autism at all. Special education services are not provided for school-aged children with developmental delays. 

So not only would Mikey not even be eligible for the full-time autistic support classroom they recommended sending him to, he’s not eligible for any services whatsoever. He can’t even have an IEP. As far as school is concerned, paperworkwise, he’s a regular, typical kiddo. 

You might feel like that’s confusing and fucking weird. Because it is. Someone dropped the ball and then kicked it into the street and it got run over by a tractor-trailer. 

The good news is that we have a great advocate on our side of the table. The school program officer is on Mikey’s side, too–she has assured me she is personally reviewing each piece of paper from this point forward. I’ve sent her all old emails, let her scan all old progress reports and data. She knows who is and is not following the rules. She’s promising me a very different experience this school year. 

Right now, our plan is to develop a 504 plan for Mikey with special accommodations to start the beginning of the school year while he gets a fresh evaluation. We have his private evaluations from his psychologist, which we’ve provided the school.

My great hope is that he has a lovely transition into the school year with his new teacher. His medication has been working so well. He’s been doing fantastic things in social skills group this summer. He had a marvelous experience with daycare this summer, interacting so positively with other children. 

While I navigate all this drama and time-consuming paperwork with a 2-week-old baby, I hope that all of it ends up being unnecessary. And just in case it’s not, I certainly have my shit together.

What You Do When Your Eldest Child Has Autism

When your eldest child has autism, you worry about him all the time. You sit near your phone when he’s not with you, worried it will ring with news of a melt-down or caregiver wanting you to come remove him from his/her care. You sit near your phone when he is with you, waiting for call-backs from doctors and care providers or news of a long-awaited appointment with a specialist.

You find yourself pregnant, and you sit and you worry that this baby, too, will be diagnosed with autism and then you spend months wondering what you would do if there were two children under your care with such special needs. You lie awake at night and sweat, just thinking about it. When your baby gets the hiccups like your first son used to in utero, you worry this is a sign.

As your due date approaches, you make lists just like any other parent with older children who need care while mamas are off birthing. Except your lists are centered on your oldest child and his lists of helpers who all need phone calls to reschedule appointments.

In between contractions, you remind your husband to call the psychiatrist to cancel a med check, and then you remind your husband to please make sure your oldest child gets his meds. You realize as you labor that you failed to properly prepare your oldest child for the sounds you would be making in labor, for the way your body would appear and for the faces you might make. Your middle child is upset by this, too, but you know he’ll get over it and just turn the iPad louder. So you stop focusing on your breath and you worry, always worry, about your oldest child.

While you’re in the recovery room making frantic calls to your lactation consultant, you see that you’ve missed several calls from the school superintendent, calls you’ve been planning and waiting for for months. Your stomach sinks at the thought of another round of phone tag to square away this coming school year. You forget the lactation consultant and think instead of the summer you’ve spent preparing for your IEP draft, for the specially designed instruction you need to request so your oldest son can be successful at school. And there, in the recovery room with your baby not one hour old, you email the superintendent asking if you can reschedule the phone call for Monday because you’re busy right now.

Stunned to hear from you in this state, the superintendent agrees to reschedule the call, and for a few hours, you lie back and let your mind drift away from your oldest child while you get to know your newest.

We’ve Been Busy

The past month has been so busy for us. We welcomed a new family member! The boys have a new brother, whom they’ve already tried to pee on. More than once. I suppose here we shall call him Stanley, because that’s sort of what I wanted to actually name him.

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