Wednesday, April 16, 2014

Walking for the Community

Team Joey

This year, we will be a team at the Autism Acceptance Walk on April 27. The Walk is an event to support the Autism Society of Northern Virginia, and to raise money for their Intervention Assistance Fund. This is a program that provides "mini-grants" to families to help pay for therapies and services their loved ones need to function and improve their lives.

In other words, we are raising money to go directly to autistic people to help them. Now.

Last year, the event raised $22,000. Our goal is $500. Your support, moral and financial, is much appreciated. Let's get people the services they need!

Thank you again!

Thursday, April 10, 2014

Twelve Years


Tuesday, April 08, 2014


Tomorrow is going to be a big day.

I have some friends coming to help me throw a bunch of stuff in tubs, and haul it to storage. My basement is full, I have a guest room full, I'm a hoarding packrat that would make a good TV show. It's all headed to the storage, so I can go through the dozens of tubs of crap in peace. I've been through a couple dozen already, mostly sent off to the dump or the donation bin. I'll get my basement back, and can set it up for the boys. My house will have a semblance of being picked up.

Sounds great, doesn't it?

I've actually been working on it, box/tub by box/tub, one or two a day. But now I need it to happen RIGHT NOW. Why? Because we need help. The kind that requires a social worker to come to your house. That's how you apply for Medicaid waivers here. They send a social worker and a Medicaid person to your house, and determine if you qualify for the waiver, so you can get some help. Having social services in my house is not something I look forward to. I look to the left an the right, and all I can hear is my dad. The words aren't pretty. Everything I've heard about letting a social worker into your house is also not pretty.

And I am the worst housekeeper on the PLANET. It may have to do with trying to work three jobs and raise two special needs boys, but to be honest, I sucked at housekeeping before I ever had to work a day in my life. Just ask my dad.

In the face of ten weeks in Baltimore, the continued high anxiety, the increased spring bolting, and the emotional wreck that is my son spiraling downward every moment, we have come to the end of our rope. This is going to be a financial disaster for us, just to find a place to stay, far more if we can't get the insurance to cover services. This is already an emotional catastrophe for Joey, even with the increased medicine. There is a waiver that will help with respite care, which would let us bring in someone to work with Joey in our home, and possibly allow me to shower more often. It also is a back door into Medicaid, which will cover a broader range of service than the state BC/BS will- we might be able to get some speech services covered again, maybe even some OT. They might cover some of the behavioral therapies that BC/BS considers "educational" (and the school considers "medical" or "not directly related to academics").

A social worker in my house means I spent a good deal of the afternoon with several large tubs, stuffing them full of clutter, so that I can go through it all later when there is more time. As if it was in any way related to Joey needing anything, or anybody's business, if I have stacks of books, papers, and toys in my house. As if it made any difference that the boys tend to kick trash under the couch, toss notebooks around, and leave their stuffed animals in little nests beside the furniture. Why should it matter that my back hall is basically a big closet, with hooks on every (real closet and basement) door, covered in jackets, hats, and tote bags?

I put every thing in a bin, each item tugging at bitterness. It shouldn't be anyone's business. I should be able to apply for this in an office. I also think about those messages we get bout government assistance. I have seen the posts on Facebook and Twitter, I know we are about to lose more people, we know how they feel about us, are about to feel about us: mooches, lazy, social dregs. We have heard the message, loud and clear. I don't want to hear the "well, I didn't mean you" excuses. Because you know what? You do mean us. You mean me. You make it harder to do this.

And every book, every toy, every paint bottle, every pencil, each and every thing I place in the tubs was accompanied by the tears. This shouldn't be. We were doing so well, Joey was doing so well, how did we get to this? How did it come to this? Where did we go wrong? We should have fought sooner. We should have done more. We should have pulled him out of school years ago, since we couldn't afford a lawyer. We should have done something the moment we saw the downturn. We should have acted after the first bolt. We should never have listened to the school people with their chants of "this will work" and "it will be OK" and "we will take care of him." All lies. Every single one of them.

I'm a smart woman. I should have known better. I did know better. Joey is paying for my being lazy, and complacent, and trusting the wrong people, and wanting it to work.

I place each thing in the tub, another mark of my own lazy, complacent, idiotic ways. It will go off to storage, where it will sit for months while we try to get this sorted out, then go to Baltimore, then the new semester will start, and fall rush will hit us at ETS, and there will be no time. Christmas will come, and go, and what will I have done? We don't even know if this will come to anything- we may go through all this, and apply, and have it all be for naught.

They will help Joey this summer in Baltimore. I have to believe it. It's going to work. It's going to be OK. They are going to help us. They are going to help Joey. We are going to get the depression and anxiety under control so he can go back to being happy, and healthy, and independent, and growing.

Eyes on the prize. As I close another lid.

Friday, April 04, 2014

The Logistics of Hope

It's been a bit of a tangled web of a week.

On Monday, Joey had a meltdown over a test. He bolted from the classroom, and was finally caught just before he hit the school parking lot. Yes, that means he left the building. He spent a lot of the day in the red zone, and even had an incident where he called a fellow bus rider an ugly name, which had to be addressed. It was not a positive day.

On Tuesday, he decided at some point in the afternoon that his parents were dead. With no defenses against the intense emotion that comes with such an idea, he naturally freaked out. They caught him on the far side of the parking lot. Thus was our welcome to Autism Awareness Month. He was so upset, I had to fetch him from school.

After two days of escaping, and knowing we were seeing our neuro on Thursday, we made the executive decision to just give everybody a break and keep him home Wednesday. Sounded reasonable. Clearly, we have a depression and anxiety issue, and needed it addressed. We also clearly had a safety issue, and it would give the school a couple of days to regroup and readdress that. Sounded like a good plan to us.

I got the call in the afternoon. Because he was responsive when they stopped him (across the parking lot!!!), so they decided it was a discipline issue, and were counting the day as OSS. Because it makes total sense to punish a kid for having a nervous breakdown, especially when you can't keep him safely in the building.

I think the light that shot from my hair follicles as I had my conniption fit could be seen in London. And that loud screaming that rang in your ears Wednesday afternoon? That was me.

That was the easy part of the week.

Our neuro, Dr. Rubenstein, is a very interesting gentleman who, I am convinced, thinks I am nuts. We managed to get moved up the appointment queue because of the incident a couple years ago, where Joey had a massive meltdown and was completely unresponsive (he was suspended that time, too). We were worried about seizures. Apparently, saying "I'm worried about seizures" moves you up the wait list. The doctor was very good at listening, but when I got the report back, I suspected from the wording that he thought I was nuts. After all, the incident I was describing, with a thrashing, violent, screaming child who destroyed a classroom, seemed little connected with the happy, chatty guy he was seeing in front of him. We were sent home with a renewed prescription for Lexapro and another appointment in six months, by which time I was to send him all of the evals we had ever had done.

This is not the face people expect from a severely depressed, seriously anxious child.

I digitized them, because sending them printed out would have taken a large priority mail box. And to be honest, we have less paper than many, many special needs parents I know. I then sent the whole mess as a CD. When we arrived, I have to admit being impressed again: he had meticulously gone through every single report, pulling out ones he thought significant, and asked me about them. He was very happy that we had been "on top of things." Yet, there was that feeling of, "but I still think you're nuts" that I was getting from him. Oversensitive? Maybe. But... wait for it...

He decided Joey was in such good shape, we should work on helping him focus. We tried Adderall, but it didn't do anything but keep him up all night. We discontinued it, and decided to try something different after our next appointment. That was the failed experiment in Ritalin, and the resulting four suspensions and other school disasters. After a series of emergency calls, he came off the Ritalin, was suspended four times during the withdrawl, and we now know that we can't work on focus. We have to get the anxiety under control first. We got an emergency prescription for Buspar, and by Christmas, we seemed headed to even keel.

Then came the snow. They've missed two weeks of school. Joey is out of sorts. His depression and anxiety are through the roof. And now, spring is here, his regular freak-out time. Yay, us. So we got suspended for having a breakdown, and go to the neuro, and tell him our tale of woe. The cussing, the self-deprecation, the sudden anxiety attacks and death thoughts, the meltdowns, the school's reactions, the escapes. I encourage Joey to tell his side, and he starts in on kids calling him names, getting answers wrong the the tests... and the words we hear all the time start coming out of his mouth. It was just a little, a few "I'm stupid"s and "I'm retarded" and a couple of cusses, just mild ones, not the big ones. I got him calmed pretty fast. Then I turned to the doctor.

His face had changed. He was frowning. This is our fifth appointment, and he had been sometimes cold, but never frowned. He asked how long it took us to get to Kennedy Krieger. He asked until he understood where our home was, and it took us two hours to get there, through two heavy traffic zones. That we got up at 4am to get to 8am appointments, mostly so we could avoid the traffic and not miss the appointments.

Then he hit us with why he was asking.

He was really upset about Joey's condition and deterioration. He realized we really did need help. He could finally see it: I'm not nuts. I'm desperate, and my child needs help. Now.

Ever try to get a child who is both under 12 and autistic into a psychiatrist? We're on waiting lists. We've been on waiting lists. We're still waiting. The demand is extreme, and the supply dangerously low. Such is the state of our mental health system, getting appointments for under-12s is hard enough, but coupled with communication disabilities, near impossible. Behavioral therapy? No insurance covers that- IF you can find one. They consider it educational. The school's behavioral specialists? Joey was great when she was his teacher. That was four years ago. We're still trying to recoup skills he had when she was his teacher.

Kennedy Krieger has these things, and can do intensive outpatient intervention(he feels Joey is not having the very severe violent behaviors that most of their inpatient participants have, and is concerned that Joey might copy violent behaviors, so that's out)- neurology, behavior therapies, psychiatric help, nutritional help- but it would be 4-5 days a week, for 8-10 weeks, and we're two hours away. He was frowning. He was upset that no one was helping us. He was concerned that we couldn't get to Kennedy Krieger for intensive intervention. He didn't understand.

"If you can help him, we will do it," I said. Because that is all there is to be said about that. We will figure it out. Will insurance help us? Will we find a place to live there for the program duration, so we can optimize Joey's productive hours, which tend to be morning? I have no clue. But if they can help him, we will do it.

Dr. Rubenstein is spending the next few days hammering out what the program will entail and what specialists he can bring in to help. I spent today looking into Medicaid and SSI, talking to Joey's private speech therapist, and trying to track down costs of rooms and sublets in the Baltimore area. Mom worked on hotel rooms and other possibilities.

Help may be in our grasp. I'm not letting go.

Tuesday, April 01, 2014

Shine On
Thank you, Jill Smo.

Honoring the memories of those lost, and sending hugs and prayers to their families.
Our families.

Joey has completely escaped his school twice in the last two days. We don't know why he is having an anxious week, but this is our reality.

Please join us in the vigil to support these families. Please pay it forward.

After all, it could so easily be us.

Saturday, March 29, 2014

Drama Llama on T-shirt near you!
New at the Joeymom Autism Awareness Bazaar! Just say no to the Drama Llama!
And today's llama forecast.

Sunday, March 23, 2014

IEP Time: The Key

Joey's IEP meeting is this week. The purpose of the meeting is to determine his goals for the next year, but I think it will only be the first of at least two meetings, since I had the school actually do some evals, and they aren't done yet. Can't really make goals for a child until you know where they are.

However, here is the beginning: that first attempt to hammer out what Joey needs, and where we need to focus. As such, it is time to re-assess the bigger picture: try to get a handle on who Joey is, what he needs to move forward in his own development, and how to support those needs.

When Joey was getting what he needed, he made a lot of progress both socially and academically, meeting his goals and becoming increasingly independent. That was four years ago. Trust me, I know how horrible that reads. Right now, that is not where we are. We need to meet Joey where he is right now, not where we think he ought to have been. At the same time, what happened? And what can we do to fix it so we return to meeting goals, making progress, and resuming the march to solid development and independence? How do we go back to helping Joey be happy, and gain the skills he needs to successfully manage himself and his own life as an adult?

How do we re-gauge what he can accomplish in a year? Clearly, this needs to be reconsidered. He hasn't hit his goals in four years. We need to re-consider what the bigger goals are, and how to break them down into the smaller chunks. Then we need to be meeting those chunks. We need to reconsider what made Joey so successful before, and ask why he is no longer meeting his goals. What combination of re-write and resources would make this next IEP successful?

Key to all of is this, what will those goals be? What are the larger goals? Broad goals like "being happy" and "becoming independent" are too vague to work with. What does Joey need to be successful in the school environment, and in the larger world? How can we get him access to the curriculum of the school, assessed accurately in his success in learning that curriculum, and engaging that curriculum in terms of skills and knowledge? You can't write goals until you know what skills he has, what skills he can use, and what skills he needs. You need to understand where the real gaps are. It's useless to write a goal saying a child needs to learn how to write a sentence if the real problem is that the child needs to learn how to hold a pencil, or be taught to type so they can demonstrate their writing skills. It is also pretty weird to write goals about coping with anxiety when the environment seems to increase and intensify anxiety- you need to fix that environment into a low-intensity, low-anxiety environment first, so that skills can be gained and strengthened. You don't give a beginner the task of an expert; first, your goal is to master the beginner level. You then remember they haven't mastered it yet- you expect them to master it by Christmas. Then you determine means for controlling the situation and environment to provide opportunities for learning, building, and success, before moving everything up a notch. You build up to that mastery, then work on moving to the intermediate level.

Even the makers of Angry Birds understand that.

So this is only the first meeting. We can't finish this task until we have the evaluations, and compare those evaluations to our own observations. I get tired of evaluations telling me he has trouble with math, or can't read well. Really? Allow me to disprove that one for you...