Just do this!

There are some things in life that should be simple. Honestly, they should be simple, because once you are desperate enough to want to do them, you need them done, like, yesterday. There shouldn't be hoops to jump, long waits, strings of phone calls, more wrangling and begging and trying to get it to happen. You've already done all you can stand of that. If you thought you could stand more you wouldn't be...

Asking for help.

I get very angry about comments like, "you should just ask for help!" Or similar comments: "Just call 911!" "Call a therapist/doctor/lawyer!" "Just get an advocate!" "Why don't you hire a lawyer/doctor/specialist?" "Why don't you have Medicare to pay for that?" Then there are the clear judgements. "That person should have [insert one of the previous comments here]."

It really should be that simple. I so wish it was just that simple. A phone call, connect with the professional, get that help in here and get your loved one, your family, yourself much needed help. Desperately needed help.

First, there is the stigma of asking for help. Ever listen to people talking about folks on "welfare"? Or how people refer to people with mental health issues? How about "helicopter parents"? The idea that people who ask for help are somehow weak, lazy, trying to steal or mooch, bitchy, even aggressive- this is the message society hands those who find themselves in a tight spot. It's your fault you are there. Suck it up.

If you are feeling that stigma, don't believe it. Not one word of it. Not one little tiny piece or hint of guilt, or threat, or anxiety. Don't be fooled. Asking for help is a huge, monumental step in the right direction. And overcoming those feelings is just the first hurdle. The small, warm-up hurdle. The one you can do something about with the power of positive thinking and the realization that you need help, deserve help, and have the right to ask for help.

Next hurdle: finding the help.

Ever try to track down a special needs attorney? Or a mental health specialist for a special needs child (or even adult)? Which specialist do you need? Who does what you need in your area? Does anyone do what you need? Are they any good at it, even if they are close at hand? Who do you call?

Connecting with "clearinghouses" and resource information before you actually need it is a really great idea. Just found out your kid needs an IEP? Go to the parent center, the local disability resource center, get on Google, find those possible resources before you find yourself in the morass. Have the numbers at hand. If you have trouble finding them, start asking. Needling. Researching. By the time you are in a place where you need the help, you don't need the stress of not knowing where to turn. Trust me on this one.

Third Hurdle: The Actual Call.

So you call the attorney's office. You get the receptionist. She's a gatekeeper. You may not even get through her, as she asks you several questions that are really none of her business, you want to discuss your answers with the damn attorney, not the receptionist, that's why you are calling. Three receptionists later, you finally get told someone will call you back.

They never do. You call again. You start leaving a string of messages, like a crazed stalker, begging for the help you desperately need. Your messages become increasingly emotional, desperate, pleading. The meeting is a month away. Two weeks away. Next week. The damn meeting is tomorrow, why won't you call me back and help me???

Don't even get me started on our local Project Lifesaver fiasco.  Remember, Joey has escaped his school building six times this year. Not the classroom. The building.

SIX. TIMES. 

Then you call the doctor/therapist/specialist. You manage to get through the gatekeeper again, and have the callback game again. Finally, you get on the wait list... for six months from now. Then you have to call again, and re-sign-up onto the wait list. Some places, you go back to the bottom of the list. Some places forget you were ever on the list. Some places tell you they have no idea what list you are talking about. Sometimes you make an actual appointment six months out, to have it cancelled two weeks before. A week before. The day before. Oopsie, doctor/therapist/specialist is going to a conference that day. Their schedule changed and they no longer have appointments at that time. You go back to the bottom of the list, praying some other poor soul cancelled their precious appointment and you win the lottery for being called to take it.

There are some key words that might get you scooted up the list. I assure you that "my child is suicidal and jumping out of moving vehicles" is not among them. I think "seizure" might be one for the neurologist, because instead of being put on the six-month wait list, we got an appointment within two months, an actual, scheduled event that actually happened. It was amazing. However, since it appears to have not been a seizure, I still think he thinks I'm nuts.

Yep, hurdle four: you finally get to see your specialist, and you end up back at hurdle one: being judged a pushy, bitchy, crazy parent who just needs to pull up their big girl panties and deal. The lawyer tells you to "stand your ground." The doctor gets all "concerned", but when you get the report, it says nothing about being referred to intensive intervention or that anything observed was in any way problematic, despite their apparent "concern" when you were standing in front of them. The therapist gives you some stuff to "try at home" or a list of "recommendations" that say nothing about them being actually necessary. You aren't even sure they are specifically relevant to your child.


It's like they have no idea why you called. Or what you went through to get to the point where you felt the need.

Let's say you get over hurdle four. They agree to help, and actually start to do something. Now you have to pay for that.

Welcome to hurdle 5. See, your medical insurance doesn't cover that therapy or service or doctor, because it is related to your kid's special needs. Or they consider it educational. Or you live in a state where they can basically exempt themselves from anything they want, despite having a doctor proclaim treatment is needed, effective, and available. The school won't pay for it, because it isn't through their people, or they consider it medical. I have no clue how anyone pays for a lawyer. I suppose if your case is super-blatant, they take you on contingency? Or you have wealthy relatives? Or a major bake sale? Take out a second mortgage, hoping you both win and get some cash to cover your costs in the settlement? What if, despite everything, you lose? How can you leave a child in what you know is an inappropriate, even dangerous, setting, even though the courts tell you it's just fine and all legal?

I haven't even tried the social services debacle yet. I just have the stories of friends to consider. Calling in social services seems to be asking for trouble. I have friends who just decided to end SSI. They still qualify, but it was such a pain they couldn't deal with the stress of the paperwork anymore. They would get things their kids needed, be told it was ok, turn in the receipts, and be told that it actually wasn't OK and they had to pay back the money- which they used for this item that their kid really needed. All those stories of people living off their special needs kid's "check"? I have no clue how you would do that, since you have to justify every expense you use the money for. Besides, my friends were tired of being vilified for getting income to cover their kid's medical expenses. Remember, people on "welfare" are all "welfare queens." People who need that money are reminded of that everywhere they turn. Welcome back to Hurdle One.

This is all the epitome of idiocy. A family needs help. They call for help. They should get that help. Immediately. Easily. Readily. Respectfully. Asking for help should not cost you your health or your dignity. You should not feel you might be paranoid, wondering if you are doing the right thing. Wondering if there was more you should have done before reaching out. You shouldn't have to beg, plead, and sell your first-born child to get it.

By the time you ask, you are already saying you are overwhelmed, stressed, and need help. Adding to the stress isn't helping. Judging those who are trying not to drown in deep water by asking why they don't just swim isn't helping. Tossing a rope that is too short for the drowning person to reach isn't helping.

It should be so simple. It needs to be simple. Why can't we just make it simple?

Concerned Face

We're on the roller-coaster again.

I do a slow circle around the old school, where Joey went to preschool, where the social worker is. We haven't done a social history since he was two. The young lady I'm going to talk to is new, she doesn't know us. Turns out, she's not familiar with the people who work in the different schools or anything.

A slow circle. I spiral in on a parking spot, like a shark. It isn't where I wanted to park, but there's nothing else available. I wonder why all these cars are here. I never find out.

I climb up to the building, through an entrance I have only used once before. Joey used the entrance on the other side of the building. I always parked in that little side lot when we were here for school, or meetings. The building seems strange, since this isn't the entrance I'm used to- twisted around weirdly. I find my way to the main office to sign in. I don't know the secretary there. More weirdness.

The new lady comes down, takes me upstairs as if I don't know exactly where I am going, only I could walk this path blindfolded. There are 27 steps to the second floor. I count them off as we climb, in my head. They haven't added any in 10 years. It's the exact same room. I was here, ten years ago. The story was shorter then.

I rattle it off. I start on August 31, 2004. I make it to this year. I think she's figured out I'm not happy. She asks more questions, filling out her little form. Who lives in the house with us? How old is Joey's brother? How is Andy doing in school? How is Joey doing in school? Do we have health insurance? What is Joey like, his personality? Does he have behavior issues? Does he get aggressive? What do we do at home to discipline him (her words)? What services does he get? What contact does he have with the community?


She puts on her Concerned Face when I talk about him being suspended, when I tell her about the possibility at Kennedy Krieger, when I note the differences between second grade and now. I don't know this woman, I don't know if Concerned Face is going to mean anything yet. From experience with others, I'm betting it means nothing at all. She's trained to look concerned. It's an Active Listening skill. It's her job.

And I never forget, it's the school that signs this woman's paycheck. You can never forget that when talking to people- who pays them. Whose side they are on. It's like a Mission Impossible, with espionage and counter-espionage. What information do you offer? How will it be used? How could it be used against you? People trained to take every word you say and judge you with it. And perhaps I am suspicious because I know that usually, when Joey goes into meltdown, it's my fault. When I don't pick up the signs, when I miss the cues, when I make the wrong choice of intervention or lack thereof, the wrong moment or the wrong words or the wrong tone. But you don't want to say that to a person who could pick up the phone and have your child removed from you, just like that.

Paranoid. I've become paranoid, suspicious of everyone connected with the school, because every time I ask for them to help him, we get nothing. Or worse. They have had him since he was two, for the love of Pete. If you can't figure out how to do a job in eight years, why should I trust you to learn to do it in the next eight days?

Our meeting is in eight days. They came to the Triennial with no new evals, and the excuse that they only eval every six years. I told her that. I got more Concerned Face. But I would have none of that, especially since the evals from three years ago I thought were a load of crap three years ago. So we are doing all these evals. This is one of them.

Eight days, and I will know if these people are competent. It will be my turn to judge them. After all, no one knows Joey better than I do. I will know if they can evaluate him and come up with an accurate picture. I will know.

Walking: Autism Society Acceptance Walk

All of us at Joey's Stage Door Stars art show last year.

Today is the day! 

There had been hullabaloo about where to put your money to show support for autistic people and families, where the money goes to help people with autism. What can we do to increase support services, access to therapies, get people help they need. Well, here it is.

The Autism Society's Intervention Assistance Fund provides mini-grants directly to families, so they can access the supports and therapies they need to help autistic people grow and become the independent, happy people they can be. This isn't just for kids, either: these people provide adult services, and make adult services available and affordable.

In case you miss it from their website:

Intervention Assistance Fund Mini-grants

ASNV’s Intervention Assistance Fund awards quarterly mini-grants to eligible adults with autism and families of those on the spectrum to help defray costs of therapies, medical procedures, training and other treatments. Click here to find eligibility requirements and application instructions.  ASNV has a designated subcommittee that evaluates the applications and administers the program.  You can donate directly to the Intervention Assistance Fund and 100% of your donation goes to support local families.

Your donation goes to the fund, which then goes to the families and autistic adults who need support and services.They help cover families who otherwise can't get traditional services such as OT and speech therapies, but also help with "uncovered" services such as adult support, equine therapy, art therapy, safety equipment, behavioral therapies, assistive technology, summer camps, respite care, psychological evaluations, and even training workshops. THESE PEOPLE HELP.

The Fredricksburg Walk raised $22,000 for the fund last year. Our team goal is a modest $500, but we know every dollar is a huge help to access therapies, training, and supports that directly help people with autism, and that would otherwise be beyond the reach of adults and families.

Our Team Site has a donation button. When you donate, you can become a "virtual walker" and member of Team Joey! If you prefer a straight donation, just put in your amount, and then scroll to the bottom for the checkout button.

Thank you for your support as we all walk today to make a better world for families in Northern Virginia!

In the Grips

I've been having a lot of anxiety attacks, depression attacks, and general upset lately. I'll tell you all about it when things start to smooth out again, but the details are not what's important today. The reason those details are causing a lot of discomfort, however, is.

It's Wednesday. That means I teach a class and make a stop at the adjunct office before I do, where there is another adjunct doing the same thing I'm doing- printing out lesson plans, worrying about whether or not to change something in the class format for the evening, sometimes meeting with students. Usually, he giggles at my lecture, because the class is on modern and contemporary art, and hey, performance and installation arts can be amusing to an economics professor. Just saying.

And so we chatter a bit. He noticed my van is smothered in autism bumper stickers, and his (now grown) kids both have issues, so we swap war stories a lot. What works, what doesn't work, how different kids need different things. We were talking this evening about some of the upcoming events and past events and details and stuff, when the question came:

"What's his prognosis?"

It is likely a question that would sound odd outside the special needs community, especially in those terms. Prognosis is a medical outlook. We talk about "prognosis" when we talk about things like major infections and broken bones. It's a question that makes me wince. What will Joey's future look like? That's what he meant.

If you had asked me that question four years ago, I would have been all bubbles and grins. No, we weren't all roses and good times, but we were headed in the right direction. Joey wasn't reading for me at home, but at school he was reading on the 6th grade level. He was tested a few months later, and passed the final math test for the 5th grade- and he was starting third grade. He would walk between classes by himself, between classroom and the cafeteria by himself, between the bus and classroom by himself. He was gaining social confidence, with a few hiccups as he was very trusting. His language use was improving. He would participate in regular classes with a little support. All arrows were pointing to progress, growth, and the steady pace of growing up, with a few (not unexpected) blips on the map. Prognosis? Independence, higher education, mathematical brilliance, adulthood of normal levels of support and opportunity. It was looking good.

Today, I haven't a clue.

As we prepare for 8-10 weeks of intensive treatment for Joey, we feel we hit a major block in the road and fell into a sinkhole. Joey's academics have made a steady march backwards. His ability to cope with the school environment has turned into a disastrous and dangerous nosedive into depression and severe anxiety. If I had to make a guess now, I'd be at a complete loss. I feel like if we didn't have this intervention on the horizon, the "prognosis" would be dependence, limiting communication disabilities, and severe depression struggles, with no light at the end of that tunnel. With it, I think we're having to come to grips with the fact that Joey is going to take longer to get to independence, and gain the skills he needs and access the education he needs to be successful in supporting himself. We've simply lost too much time.

We find ourselves in the grips of stigma that we intend to fight full-out. Some kids just need longer to get where they need to go. Some kids need more help. 18 and 21 are completely arbitrary marks on a development spectrum, and we all need to face the possibilities of difference. I went to school with a kid who was very much a "space cadet" all our growing up. He's now got a college degree and is doing just fine- he just took a little longer to get there. So what?

We're all adults for a very long time. After a while, does it really make that much difference if we get what we need when we're 17 (when I graduated high school) or 22 (when kids automatically age out of the school system)? And if we get what we need by 22, why would that make higher education a problem? Why should a slower developmental timeline be a serious problem?

How will the stigma of slower development affect Joey's opportunities to have a happy, fulfilling life?

As parents, we do our best to help our kids develop and grow, and we need to do more to respect the unique pace of each child. The push for earlier and earlier academics is one we should consider carefully, and reconsider what other skills young children might need to develop and learn besides letters and how to sit in a chair and fill in a little circle. Meeting kids where they are, how they are, and providing them with individualized challenges and successes takes a lot more work than our current education system is willing to give it, even in special ed (where "individualized" is supposed to be the cornerstone of the education plan). The next time someone tells me Joey won't suffer academically in a self-contained classroom, I'm going to laugh, while asking what planet they are on- because they certainly aren't from ours. Joey's scatter of splintered skills needs to be taken up and addressed. I keep saying we need to play to his strengths, in order to help him with his challenges. I'm tired of being ignored, especially to the point where Joey is failing math tests.

Really? MATH tests?

We are in the grips of understanding that Joey needs more support in order to face his challenges. Those challenges have been left unaddressed so long, it will now take much more time to face and overcome them. We don't know what his future will look like, or how far he'll be able to go.

I suspect he will surprise us all.

Walking for the Community

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!

Twelve Years

HAPPY BIRTHDAY, JOEY-BOY!!!!

Preparations

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.

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.

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.

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.

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...

It's Not OK.

I have been following several stories online about kids being brutally bullied for liking characters and shows considered "not appropriate" for their age and gender. Currently, many of them are about boys who like My Little Pony. They are beaten, teased, and told not to wear their favorite shirts or bring their bookbags to school because, heaven forbid, they like a show that has female ponies as main characters, and was designed to be marketed to girls. Occasionally we hear of a girl being teased about wearing a shirt or bookbag that has a male character or superhero on it, but we are quick to hop to her rescue. Heaven forbid boys like a show about strong-minded females who practice good social skills and are supportive of each other. Right?

Kids like what they like. I like Disney movies. I could sit here and watch Cinderella or Snow White over and over until my poor husband turned into a blob of sputtering goo. (And I have him as witness to this fact). I'm 42 years old. If you don't like it, I can show you the door, because I'm allowed to like what I like.

I can defend myself. Not everyone can. Especially kids.

If you are teaching your kid that it isn't OK to like something, you are teaching them to give someone else a hard time- to bully them- if they like it. That is NOT OK. So when you teach your kid that they can't like Elmo anymore because they are a teenage boy, what do you think he will think when he sees another person who likes Elmo? That they are being baby-ish, silly, inappropriate? And how will he handle that feeling? What will stop him from walking up to that person and saying, "Elmo is so babyish! You shouldn't like that anymore, you're not a baby!"

My boys like a lot of things, and many of them are not "typical." The whole idea of "age-appropriate" is arbitrary. When I went to see the last midnight show of the South Park Movie, there were 6-year-olds roaring it up in the theater. That isn't "age-appropriate", either, but obviously that didn't bother their parents. And those kids weren't likely to be bullied about liking South Park, either.

Why would that be?

Why can't my sons like butterflies, rainbows, kittens, unicorns, or any other thing they like? If my son wants to wear pink, why is that a problem? After all, they both look great in it. My grandfather wore pink all the time, and he looked good in it, too.

When I was a kid in school, I was the weird one. I liked black turtlenecks, reading books, writing stories, and running around in the woods. I like bright colored shoes and big earrings. No, I didn't have a lot of friends. I was never invited to a single party (unless the whole of a group was invited- never for me, myself). But I knew I was me, and I could defend myself if anyone dared to actually be brazen enough to comment to my face. I only got beaten up once. I remember it very well, and still remember the older girl- the only other girl in my neighborhood- coming to my rescue, and letting that kid have it. I just could not be anyone else, I couldn't just "fly under the radar" and get into the things other girls were into, and "fit in." I also had an awesome Mom who let me be who I was, and offered many things so I could discover what I liked and what I didn't.

There are plenty of kids out there who cannot defend themselves, or who face bullies who aren't afraid to attack viciously, and even physically. They need our support. Like Twightlight Sparkle, they need true friends to stand with them when they are vulnerable, even physically shield them if necessary, so they can learn who they are and gain the strength they need to be themselves.

I doesn't hurt any boy to emulate Rainbow Dash. Or AppleJack. Or Twightlight Sparkle. Or Rarity, Fluttershy, or even Pinkie Pie. There should be nothing wrong with having strong female characters as your heroes, no matter your gender.

Bullying should never be considered OK.

Skyriding

It's been a very long time.

When the boys were smaller, I would regularly take them on adventures. In fact, every good weather weekend was time to be out and about, anything and everything. We went to the zoo. We went to the farm. We went to museums. We went to Maymont. We went to the park. We went to Williamsburg and Jamestowne. We'd visit friends in DC. We went for walks at Wakefield. We get in the car and off we'd go, often with Grandma in tow.

Most of the time, it was just me and my boys. JoeyAndyDad often had to work. I learned the drill for handling two boys by myself. I carried an emergency adventure kit with me: toys, fidgets, bandaids/first aid kit, water, washcloths/small towels (never leave home without your towel!), wet wipes, chewy candy, small snacks, a spare totem (whatever Joey was carrying around- such as a diecast bus or a wooden spoon), sunscreen, lip balm, spare bags, a spare set of clothes for each child, small change and dollar bills. I was ready.

We had great adventures. We've done our share of rock collecting. We've chased chickens and picked pumpkins. We've seen dinosaurs. We've seen lots of dinosaurs. We've checked out colonial ships. We've made friends with some otters. Maybe even too friendly. We met the Queen (well, the RenFaire one, anyway). We dropped pencils on the coral reef exhibit in Baltimore. We even got attacked by turkeys. Adventures rock.

Lately, taking them by myself has been... not a good idea. Even going to the park has been, for the most part, a disaster. With both boys increasingly brittle and Joey's bolting, I've been sticking to controlled settings. The pool is fenced, and has lifeguards about who are told about Joey. The parks we do go to have clear boundaries I can enforce and see clearly. Nature centers have walls.

However, work was cancelled today, its going to snow tomorrow, and I just couldn't bear to waste a 70-degree day. JoeyAndyDad wasn't feeling hot, so we left him home to rest up, and headed to the Richmond Zoo. I figured I could corral them with the budgies if all else failed.

I forgot part of my kit, because ts been a long time since I needed one. Folks, do NOT forget your sunscreen. Or your towel.

We managed to have a fabulous afternoon, anyway. There were lots of people, but nothing that made us feel overwhelmed with crowd. Unfortunately, the giraffes and budgies weren't very hungry, having chowed on birdseed and animal food all day, but we discovered that most folks don't know you can also feed the elk, the warthog, or several other animals with tubes to their pens for the purpose. Andy, however, did figure it out. I should mention that elk are much bigger than I thought. With horns I would not want to meet in a dark alley.

We also took the sky ride. Andy got nervous with the height, but with the lovely weather and great view of the cheetahs and rhinos, he managed to like it. Joey loved it. And they got to ride together, with mom in the car just behind them, which was apparently a happy adventure in and of itself.

They have also put up an awesome play area, and Andy would have stayed there for hours if I had let him. Lots of climbing and sliding and stuff.

We did manage to get a budgie on a stick, and we got the giraffe to take a nibble. All was well with the world.

Yes, we managed to have a successful adventure. No meltdowns. No whining. Tired, happy boys. Thank you, Richmond Zoo.

Swords in the Hand

It's a meltdown.

What was the trigger? I can't be sure now. But the words that come from my child's lips are not his own. They are horrible, ugly, painful. He's been working hard not to use them, but when the pain is there, they capture it so well, project it so well.

The words he calls me are nothing. You all know them, everybody uses them. If we completely squash them, as he gets older and it becomes the norm for people to use them, it will only emphasize his differences. Adults use them all the time, after all. And its the pain he's trying to communicate. The frustration, the anger, the shake-me-because-I'm-not-getting-it pain. I get that. I may not like it, but I get it.

It's the words he directs at himself that really take me by the heart and soul. The self-deprecation. The words he uses for it. Yes, we know those words, too. Stupid. Ugly. Fat bastard. Sometimes he sprinkles them with the fancy words that he prefers, such as scoundrel, smart alec, aggressive, repugnant, obnoxious. Then there is his new star word:

Retard.

Yes, we all know the word. We know what it means. We know how it is used. We know Joey hears it applied to him.

He hears you. He knows what you are saying, and what you mean. He knows it is an ugly, deliberately painful word. It's a sword in his hand.

When we talk about SIBs, we often talk about physical injury. People who bite themselves. Cut themselves. Hit their heads against things, or punch themselves bloody. We know it is scary (though until it is someone you love, you can't imagine how scary it can be.) We may even understand the extension of that pain and injury to others: people who lash out, throw things, flail, become aggressive in the face of the frustration, the stress, the disorientation, the pain.They are "challenging behaviors." We want them to stop. And when we understand the source, we know its not our pain that needs to stop, not our frustration that really matters. It's theirs.

What about those whose self-injury is invisible? What about self-deprecation? What about self-injury that is psychological?

The mental health system in this country is already a shambles. Now try to get help for someone who needs specialized care; a person with autism can't just walk into an office and start seeing any social worker or therapist. A person with autism needs help from someone who understands autism, who understands the issues of communication and regulation, who really gets it. Until the therapist gets it, he or she cannot help you get it. When trying to communicate these issues to Joey's last principal- a person who was supposed to be a psychologist, knowledgeable in special needs- I got told Joey might have emotional disturbance.

I knew there was nothing more to say there. Even the people who are supposed to "get it" often have no clue when presented with someone with autism who needs help. How are we supposed to help Joey cope with his pain, find constructive ways to communicate and deal with frustration, to help him grow into an adult who can care for himself, if we can't even find someone to help us who understands the challenge?

One of the ways we work hard to help Joey is by giving him language to use. We try to turn his echolalic skills into something helpful and constructive. It is a skill, a talent, a strength like any other; so feed him the language that he can use, words he can fall back on.

Yet we fight an uphill battle, because we are also trying to help him understand how he is a whole, wonderful, capable person, in a world that see him as less. A world that has given him language that hurts him. A world that, despite his talents, his intelligence, his kindness, his creativity, his imagination, his empathy, his strengths- see him in the light of less, and in the light of the word that runs bitter from his mouth: retard.

Just as we all have our own challenges and special needs, we all have strengths and we all have weaknesses, why must we take perfectly good words, and infuse them with hate? With derision? With pain?

It is no longer a perfectly good word. Please stop. I assure you, he hears you. He knows you mean him. And he knows it is a word that means pain.

More pain that I hope you ever, ever face.

One Step At A Time

Letting Joey out of my sight right now is like watching a child take a plunge off the diving board for the first time. You know they can do it. You've seen them swim, there is a lifeguard right there just in case, but you still hold your breath and pray hard until that head comes back up out of the water. And for us, we still watch them like hawks at the pool. It's what parents do.

But it is all that much more when you know your child is a bolter. An eloper. When you read a story in the news about a child who "wandered" away, and the tragedy of losing that child forever, and you ache for that family not just for their loss, but to know that, but for the Grace of God, there your path lay. It could be you next time, weathering the barrage of ugly comments about how horrible a parent you are to have ever let your child out of your sight and "letting" them escape.

It could be us.

So you have to know how huge a step it is to let my 11-year-old son go to the corner, by himself, to wait for his brother's bus. There are adults there, and they are all aware of Joey and his needs. They know I am sitting on the porch, a loud yell away. Joey is so proud of himself, going to get his brother all by himself. It's a little bit of independence.

I still wasn't ready for today.

We have neighbors around the corner, and we have often had the kids here, or gone over there. Their oldest is just under Andy's age, and their middle one thinks Joey is the bees' knees. They are wonderful, awesome people, who think my kids rock. Now that their oldest is into Pokemon, he and Andy are really going back and forth a lot more. There have been lots of "I'll see you tomorrow"s and "I'll come by later"s. There have been children appearing in my house like magic. It's pretty awesome.

Today, Andy decided he wanted to go over there instead. It's a few houses down as the bird flies, only a few more as the sidewalk turns. Nothing unusual for a 9-year-old, to go over and play at a friend's house when living in a town. Except I don't have usual kids. We said OK, because I knew I could ring over to the other house and alert them, just as I call and let them know when one of their kids appears here.

Then the words appeared, slashing through the air and dancing on my nerves with an odd, shimmering vibration:

"Come on, Joey, let's go!"

That Joey was coming, too, was just a foregone thing to Andy. I was going, and therefore Joey was going. He was old enough, so Joey was old enough. It was simply the way it was.

I balked. I know, all that assume competence and have faith and believe in your kids and all that, but if one small thing went wrong on the walk to the other house, Joey might be off to the races. Andy might say something wrong. Joey might trip and fall. Even the smallest thing can become a sudden and dramatic big deal. Besides, they would have to go around the corner to get to this house. I couldn't just watch them from the porch or even an upper window.

Joey would have to go out of my sight, and with only Andy to help him.

Joey knows we balked. We explained to him why, because you know what? He has the right to know that we are concerned about him running. We are worried about his well being and safety when he bolts. He love him.

And then we decided to let him go.



When I was still pregnant, I remember my mom saying something about parenting being a constant letting-go. She also said something about it hurting. My mom is a smart lady.

When I called, they didn't pick up the phone, so I pulled on my coat and shoes and trotted after the guys. If the neighbors were not there for some reason, Joey might melt down after the anticipation of going to see them. I got to the corner, and stared down it. They were no where in sight. I opened my phone to call again, and found the battery was dead. So I trotted the rest of the way to make sure they made it. They had. The family was there. All was well with the world.

So I went home.

Dysgraphic

I sat with Andy on the couch, the two of us; Joey tapping at his computer looking up moon phases. We had just finished another Encyclopedia Brown mystery; he had read most it if himself. Now he had to write abut the main idea. A sentence of two, that was all. He looked tired. Reading is hard work for Andy, because he has to keep his eyes carefully focused. I still catch him cheating a little, guessing at words instead of reading them. Sometimes its because he's tired and can't focus anymore, physically forcing the convergence of his vision. Sometimes he can't do any more processing. And sometimes, I wonder if he isn't dyslexic, and has just learned to fake it.

"You read it better," he sighed, though he seems proud after reading the solution. He almost got it right. He was on the right track, which I think is awesome.

"I practice all the time." This is a sort of scripted answer, one I use as a reminder to both of my boys that things don't come easy. Skills don't come easy. As if they didn't have to work at every little thing, all the time, far more than the kids around them.

We manage to get the sentence down. One sentence is all he can write, and you can see the fatigue- the letters are everywhere, and I watch as he uses strange strokes to create them. I have to spell most of the words for him. Words like "police", "tricked", "left." He got a zero on his last spelling test. Not a single one right. They were long words. He mostly left out vowels.

He sets the paper aside.

"How did you like the story?" I ask. I have done it on purpose. I don't have long to wait, and here it comes. The torrent of words. He retells the story to me. Sometimes he half-whispers the last word or two of a sentence under his breath, before going on to the next one. Then he starts talking about his favorite bits. That part is a bit of word and sentence salad, but cohesive enough for me to follow if I pay attention. He giggles over the solution, a little detail that made the whole clear, he thinks he'll be able to solve the next one.

"But you read the next one," he says, looking at me uncertainly. "I remember it better when you read them."

I know this is true. If I read it, there is less word salad after. The ideas are clearer, so long as I don't ask him to write them down. I wish I could make it easier. I wish there were some better programs out there to capture speech- one that wouldn't balk at his tongue-thrusting, lisping speech; one that could keep up with the furious tumble of words. Amidst that word salad, there are some great ideas, solid thoughts, keen observations for a 9-year-old.

He finally realizes homework is done, and he can play his Minecraft. As he bounces off, I know what my plan of action is.

Buy more Encyclopedia Brown.

Happy Stuff Yourself With Chocolate Day!

Available in my Cafepress shop!

Unconditional

I've spent the last few months watching people get torn up and verbally masticated over the very complex notion of friendship. What is it? What does it mean? When you love someone unconditionally, are there really no conditions? And if they do something horrible and terrible, what do you do? Are you suddenly, "well, I love you and I'm your friend and all, unless you do something horrible. Then you're on your own." If someone has made a horrible, terrible mistake, done a horrible, terrible thing, torn up lives and people and the cosmos, isn't that the exact moment they need a friend the most? Does being someone's friend, and loving them unconditionally, mean you condone everything they say and everything they do?

Friendship is not black and white. That makes it very difficult for many people to navigate. That is why middle school is so hard- kids wake up to what it really means to be a friend, have a friend, need a friend, and at the same time developmentally needing things to be clear and defined. It can be difficult to grasp the fact that friends love each other, true friends love each other unconditionally, and yet they still fight, they still disagree, they are still separate, individual people with their own views, their own experiences, their own values. Individuals don't match up 1:1 down to the last fiber. That is part of being human. Actually, it is part of being.

People make mistakes. They make bad decisions. These can be horrible, ugly, wrenching, devastating mistakes and decisions. We often spend a lot of time and resources trying not to, but it happens. Is that the time you would want to be abandoned by the people who are supposed to be your friends? Would you want your friends to be pilloried, slandered, crucified, insulted, threatened, bullied, torn apart, put down, crushed, and spat at, simply because they still love you, still try to help you, still stand by you when you need them most? If someone you love did something terrible, would you stand by them and try to help them? And does trying to help them mean you condone their actions? What is "help"?

I don't have an army of friends out there. It's not how I am. I've said it before- each and every friend is precious to me, and they are my friends because they are awesome people. That doesn't make you all perfect angels. That's doesn't mean you don't make mistakes. Sometimes big mistakes. Big, honking, holy-cow-world-ending mistakes. And if you make those big mistakes, I'm still here to help and love you. Always. You may not like what I say, or do, or what is needful or helpful. Support is not always easy, just as supporting is not always easy.

When Joey makes a mistake, and I need to shut down his electronics time to help him understand his mistake, try to fix his mistake, and learn not to make that mistake again, it isn't easy. I still love him. I don't condone the mistake. I don't condone the meltdown from the consequence of the mistake. I don't condone him cussing up a storm, calling me names, flailing at me. But I do my best to help him, because I love him, every minute, every day, all the time, always. Unconditionally. Absolutely. Just as much as when he's giggling and dragging me out the door to look at the moon, just as much as when he is covering me in kisses, just as much as when he is helping his brother learn a new game- I love him.

That's what I mean when I say, "I love you guys." That's what it means when I say, "friends are family." And when I say, "we're friends", that is no small thing.

And maybe its a bit more black and white that some would like it to be; or black and white in a different way. Personally, I think it's full technicolor wowness. That's friendship for you.

Report Cards Can Go Suck It.

Yep, its Report Card Day here in JoeyWorld. Joey's came home Friday, but I didn't get to look at it until this morning. Andy's will be here this afternoon. I'll keep you posted.

The way report cards are done here, everyone is supposedly graded on the same measurements. In other words, Joey's report card reflects his work against that of his non-disabled peers, and the standards of all 6th graders in his school. In that context, getting a C in English is a downright miracle, given his communication and language disabilities. A B in History? With a child for whom historical time* is an ungrasped abstract concept and these events seem to have no relevance or meaning? Let's PAR-TAY!!! A B- in math, however, is highly confusing. He's been doing the math I've been seeing come home for 3-4 years already, and does these sheets perfectly in about 10 minutes. Plural, sheets, as long as there is minimal language involved. I am going to assume this means they are giving him a lot of word problems. With all we've been working on with his language and reading skills and communication disabilities, I'm tempting to again PAR-TAY! Joey is rocking the world!

But it also means he won't be honor roll again, and honor roll is something that is very poignantly  significant to him. It is touted as a mark of success, and not participating is therefore, in a back-and-white world, the very essence of failure.

Joey noticed I was looking at the report, and so I asked about some of the comments the teacher made, such as "low quiz grades." That is when things starting spiraling. He only got 30s on quizzes, that he was a "stupid retard" and "retards aren't allowed to pass quizzes". Though my heart shattered in a million shards of grief, I also knew he was speaking Joey. This word means Pain. It means Heartbreak. He was telling me of frustration, anger, disappointment, and pain all in one fell swoop of verbiage.

This is a word he knows people use to refer to him, and has fully grasped what it means.  And like any other word, he has emotions attached to it, and is ready to use as a placeholder for expressing those emotions.

I already have my letter in to his teachers, trying to pinpoint the issues that need to be addressed. Are his accommodations appropriate and effective? Are these grades reflecting his efforts? I also took some steps here, the same we have done for his brother- "A" quizzes means prizes, in an effort to get him to take them seriously and try to do his best on them. But what if, with all the language involved, all the issues of testing, all the problems of balancing accommodations, expecting an A really is too much? Will not getting a prize be just a reinforcement of failure?

When Joey gets home, a certificate will be awaiting him. It will be, in essence, "You are awesome. Let's PAR-TAY!!!!" Because he totally deserves one. 





*Yes, there is a difference between abstract time concepts and practical time concepts. Joey can gladly tell you exactly what time it is. His new interest in moon phases has been helpful in getting him to grasp the idea of cycles and years. But that something happened 200 years ago? Unfathomable for him right now. He has a very, very basic understanding. For him, 200 years ago is "once upon a time", and has very little difference from 2000 years ago.

Shadow

Spring is coming.

For most folks, that means crocus, daffodils, and colored eggs. You know, baby chicks and new veggies and cherry blossoms.

For us, it means the next major regression with the change of season, anxiety attacks, and battening of hatches for the coming crisis. Does that sound harsh? Personally, I'd rather be prepped and have it not happen for the first time ever, than not be prepped and have a major catastrophe. The last school never prepped, even though we warned them, every year. And every year, they had catastrophe. I'm totally battening.

We've gotten the first whiffs of that spring breeze this week. After mostly calming down into Christmas, and making it through Christmas par for the course, we had snow. This meant school being cancelled. But Joey had already not been in school for two days of that first week back, because he had this mysterious illness. He would conk out for first period, with coughing, headache, complaining of tummy, falling asleep. He would be sent to the nurse. The nurse would call me. I would go pick him up. He would reach the car, and all symptoms would mysteriously disappear. One day, I actually called him in sick, and they mysteriously disappeared when the bus passed by the door.

So this last time he got sent home, Grandma and I came and got him, and took him out to Grandma's, and let Grandma work her magic. Why didn't he want to be in school? What was making him anxious and feel bad?

The interpretation of the data we got, spoken in Joey, is that Joey is feeling teased and bored. The math sheets sent home with him was stuff he's been using as a perseveration game since he was six. The history reading is totally baffling to him, as he has difficulty grasping abstract time and events have little relevance to him. He's in middle school, and even non-autistic middle schoolers start feeling the social pressure- so you can imagine Joey, with even fewer coping mechanisms or skills to fight the negative internal monologue of middle school than his peers, trying to navigate. This is headed to catastrophe.

This morning, when the nurse called again, I asked he be sent to counseling. I don't think they talked about what he needed talked about, but it got him calmed and back to his class for lessons, until he disagreed with something on an English test. Already brittle, it sent him into flight mode. Yes, they caught him. And thankfully, these folks have been working on back-up for when he runs, since they had so much of it already. They managed to catch him and get a card in his hands that said something like "Rock Brain Moment- Go to the Cool Zone!" and he managed with the visual and tangible to pull himself together enough to get to his Cool Zone. They had been practicing with this card for a while, prepping for just this moment. It worked.

Can I get a "GO, MRS. C!" (She's the autism resource person doing the card thing).

But just as I went out to make sure we had ice melt, even though we've already had our quota of snow for the year, I continue to prepare. I don't see this bolt as an end. I know it is the first signs of coming anxiety.

So no matter what the groundhog says, here comes Spring. Are we ready?