Sunday, August 24, 2014

Big Changes

Good news: Joey's school is officially licensed! He is set to start and is in the transition camp now! Can I get a "woo-hoo"?

Joey is going to Stafford Academy, and we are hoping for it to be as awesome, wonderful, supportive, and miraculous as he needs it to be. We have lost a lot of time, and there has been a lot of damage from leaving him in schools that just would not do what he needed them to do: provide an autism-specific classroom with trained autism professionals, and pull out to the mainstream classrooms as he was able to deal with those broader environments. They are doing it right behind us- but that doesn't help us. Now we need MORE support, not less. We have slid back into more and more restrictive environments, but not ones that included, all the time, people trained to deal with autism.

We have learned the hard way that autism is not like ANY other disability when it comes to learning. The uniqueness of the needs, the difference in motivations/reasons for behavior, the needed differences in responding to those needs and behaviors- they are so different from how you address these issues, that putting them in a room with kids with, say, emotional disturbance issues, causes huge problems. Massive, catastrophic anxiety and depression, specifically.

What we also learned- mostly from experience, but also from talking with our friends have actually had to go through these environments and therapies themselves- is that ABA isn't all that and a bucket of crackers. It's a tool (a key tool in working with kids who need to have tasks broken down and "chained" by practicing each part), but it can't be the only one in your box. Sending him to an "ABA school" without a lot of other supports, such as the psychological supports we can't seem to get for love or money, doesn't work well. Our disappointment in the Kennedy Krieger program cannot be overstated.

Stafford Academy is not an ABA school. It is an approach that immerses the kids in occupational therapy methods and interventions, addressing needs for sensory integration, stress management, movement (lots of movement!), and social thinking/skills. It will use Social Thinking in its curriculum, which you all know I love. Using lots of tools in the toolbox, the school provides a entire environment to meet the needs of autistic kids, with small classes so the environment can be individualized and effective for each child. They will be spending time out in the community, and as the kids become ready, they will hook up with local homeschooling groups for learning, community projects, and outings.

Sound awesome? We are hoping it will be. We are going to work hard to make it awesome. Joey needs it to be awesome. We want him to learn how to be happy again- not just in passing, but in his core.


Our other big news is Andy is coming home. He has been having trouble with bullying at school for years now, but we had no idea how bad it was. He is so emotionally brittle, and teachers are so not trained to deal with sensory issues that lead to being emotionally brittle, that I believe now the school adults were ignoring the signs of severe bullying- to the point Andy was learning to defend himself from these kids by bullying back. Not what we need.

I spoke to some other parents, and their kids, who were better able to communicate about the situation. One family actually moved out of the city, a decision they partly based on the serious situation in the classroom that no one would address. Apparently, if adults don't see bullying, they don't address it or even believe it is really happening. In a school. How long have these teachers been on planet Earth? Anyway, the reports from these families were far more dire than just knocking things off Andy's desk and a few threats on the bus. There was serious emotional abuse occurring, threats of violence (including sexual violence), racial targeting (we knew about that- Andy was really upset and confused by it), and a lot of things going on "under the adult radar" because it was not just jumping kids on the playground and covering them in bruises. Though we also had some of that going on.

On top of that, not understanding Andy's disability leads to bullying from the adults, both actual and perceived. This past year was particularly harsh in that regard, and the result is a child who loved books who doesn't now want to touch them. We've had a slide back in wanting to write and communicate. He has, in short, not only a lack of interest in learning, but an actual loathing of anything he views "educational." Say "learn" around my child, and you get a scowl. If you can get something from him about it, you are likely to hear the word "worksheets" and "stupid."

Andy has enough stress in his life, to be honest. Being Joey's family takes a lot of work and emotional energy, but it also takes physical energy. School needs to be a supportive, safe environment. He wasn't getting it in this school system.

I have already been doing experiments in his learning style, interests, and ideas. I've been working on putting together my toolbox. We have been deschooling, a process I hope to be through by Christmas. We are now, officially, a homeschooling family.

Talk about being someplace you never dreamed of being.

Wish us luck.

Friday, August 08, 2014

The Wild Ride

It's been a weird summer.

Remember back once upon a time when we were going spend our summer in Baltimore getting Joey all this wonderful help and therapy at Kennedy Krieger? It sounded so awesome. 8-10 weeks, and they would help him. We'd get some of the damage from the anxiety and depression mitigated. We were scrambling to figure out how to pay for it, where to stay, how to make it work. We sent back paperwork and held our breath.

We got the call back much later than we were expecting- mid-June, when we were under the impression from the doctor that he was keen for us to get started ASAP. But then we got slammed with one unpleasant truth after another.

The program was an intensive ABA program, with no psychiatric support. It got chopped down from that 8-10 weeks, where I would think even just an ABA program might be at least useful, to 4 weeks, then to 3. Then he was "too high functioning" for the main facility (because he wouldn't need nursing care... of course, they never actually saw him go into a spiral), so they were shipping us to a satellite, where it would be much harder for me to find somewhere to stay. Then, they wouldn't even be targeting the most important self-injury we needed addressed: the self-deprecation and self-harming threats. They might be able to keep him from attacking when he got desperate- but they had nothing for helping him keep from getting desperate.

One thing we have learned in our journey using ABA-based ideas and methods: you can replace a behavior, but you can't control what Joey will replace it with. That's one of the streams that fed our current situation to begin with.

I don't know if saying "no" was the right thing, but I do think we need to consider that "anything is better than nothing" may not be the way to handle support services and therapies. Getting "anything" isn't appropriate. You need to get the right therapies and supports.

I think the doctor already thought I was barmy. Now he's going to think I'm completely off my rocker.

Part of the reason I said "no" was that they came straight out and said they could not address the core issue. It was a big part. But there were other red flags for us. For one, the insurance was going to "cover" it (it was still going to be $1900) under "mental health services." The problem is, "mental health services" was the one thing they said point-blank the program would NOT HAVE. "Neuro-behavioral therapy" is apparently just a slick name for "intensive ABA"- and still ignores the root of the behaviors we are seeing, and need to get help for. I'm glad the insurance was interested in providing some coverage, because ABA is very useful for certain things. However, at Joey's age, without the psychiatric support, it would likely simply add to his depression- another reminder that he's "doing things wrong." Positive behavior supports and social skills/coping/regulation training are all great, but don't do much if you ignore the negativity exploding in my child's mind.

Anxiety and depression are strange mistresses. Kind of like Siamese cats.


Taking another strategy, looking to reduce stress and anxiety in Joey's day, we had our Big IEP meeting. It was the one that you have to stare the reality of the situation in the face and admit utter defeat in order to gain the victory your child needs: appropriate services and appropriate placement. After years of regression and struggle, the team had to agree that the current setting wasn't working. Joey starts at a special school on Sept 3, and we are crossing fingers and toes that it will work for him. It will be a small class, and he already knows and likes one of the other students. The approach will be sensory, movement, and OT-oriented, with Social Thinking as part of the curriculum, rather than being ABA-heavy- so they will address the roots of problems, not just the outward crashes. Stopping the spiral to the abyss before Joey goes over the edge just makes a lot more sense to us.

If we can locate psychiatric support, we may yet try the Kennedy Krieger program when a spot opens this fall. Until we have the crucial piece, I don't see the point of setting him up to "practice" being in a meltdown. It's not just about having resources, or services, or professionals, after all. It's all for naught if they aren't the resources, services, and professionals you need.

Monday, August 04, 2014

In Memoriam, Our Luna

Our Luna.
April 13, 1997-August 4, 2014.
We love you, Lunie Tunie.

Sunday, August 03, 2014

Summer Days

Monday, June 30, 2014

Who Knows Best

"Hey Mom!" Andy shouts from the door, "can I go with M to the pool?" He already has his swim stuff on. They are headed to the big public pool. Having a friend around the corner is big excitement for Andy, and he is totally enjoying it. We are fabulously lucky. They are awesome people, and they love Joey, too. M's little sister T is particularly fond of Joey, because they seem to talk at the same wavelength, even though she is younger.

"Do you want to go to Big Pool with Andy and M?" I ask Joey, calculating how long it will take me to get into a suit myself, and what would need to be packed to survive an afternoon at a very crowded public pool, instead of the Smaller Pool where we are members.

"No," Joey replies without hesitation, and suddenly settles in front of his computer. This is unexpected reply; I blink, then turn to a crestfallen Andy.

"Well, you can go ahead," I say, to Andy's delighted surprise. After all, I know M's parents are like me- eyes on the children at the pool. Not time for reading or facebooking. Besides, Andy hasn't passed the swim test at the Big Pool for the year, nor has T, so they will all be in the shallow end- all being in the same section makes it easier to watch them at Big Pool. He'll be safe, have fun with his friend, have a relaxing afternoon at the pool. That's a Go.

As the door closes, my brain starts whirring with ideas for engaging Joey for the afternoon. Crafts? Books? Games? He gets up from the computer, disappears upstairs, giving me a few minutes to regroup. I start a plan of action.

He appears, fully dressed for swimming, with towel.

"Let's go to Smaller Pool," he announces, rather than asks. "Not too many people."

It is a victory of self-advocacy that I gladly reward by grabbing my car keys.

Wednesday, June 11, 2014

Positive Reinforcement

Joey has discovered Facebook. No, he doesn't have his own account, he isn't old enough for one. I haven't let him start a side page from my account, either. However, he has figured out that Facebook communicates with people. It's kinda awesome.

It started with photos. I started asking him if it was OK to put photos of him on Facebook. Although the response was almost without exception the "yeah" he gives that makes me wonder if he actually processed what I said, or just gave a vague answer because he knew I had asked a question and expected one, I now suspect he was paying more attention that I was crediting him. This is, unfortunately, not an unusual situation for Joey. I did continue to ask, just in case- and now I am so glad I did.

Then he started asking for me to put photos up, then videos. "Facebook it, Mom!" became a common request. "Let's make a video and put it on Facebook!" And people started "liking" them. Positive feedback is something Joey lives for. So now he asks "how many likes did I get?" Or I will cheer him up by showing him likes to a photo or video.

Now he is dictating status updates. "Mom, I want our friends on Facebook to know..." "You're on Facebook! Say..."

So if you are following me on Facebook, and you see "Joey wants you to know...", rest assured a little man is at my elbow, eagerly awaiting those "Likes." They totally make his day.

Tuesday, June 10, 2014


I have advice for every sane person on the planet: never read the comments on news sites. Comment sections have becomes fuming bastions of ignorance, hate, and widespread evil, stewing in tempting little bites of illogical nonsense that make one want to scream at the computer at 2 am.

Heaven forbid that article bring up the issue of special needs services or mental health services. Or both.

The general consensus out there appears to be that people who need help for their kids should go out there and get it. What's wrong with those parents, anyway? Lazy, selfish beasts raising brats to run wild, and then don't go out there and get them therapy if they need it. Or they over-diagnose their kids so they can drug them into oblivion. One or the other- and both opinions often from the same mouths.

What they don't know is that it isn't that simple. One, you have to know what services you need. Two, they have to actually exist.

I've been impressed by the growing range of services available to kids (mostly kids) who need a lot of support to make their way in the world. We have seen a lot of programs (relatively speaking) for non-verbal kids, kids with severe behavior issues, kids who need to be taught how to learn and respond, so that they can be taught skills they need to get through life, such as bathing, toileting... even simple things like walking. There are whole schools dedicated to teaching kids basic life skills, skills of daily living, and basic academics. There aren't enough, but there are more than there were. Or maybe we just know about more of them.

Then we get told Joey is "too high-functioning" for their "program model." Then they start listing off other programs, pause and note he is "too high-functioning" and "too verbal" for those programs, too.

Joey's school is having trouble keeping him safe. The problem is, most of the time, he is fine. But every few days, sometimes with a break of a couple weeks, he is not fine. Those are the times we need to address, so that when he finds himself in trouble, he has skills and strategies to fall back on. We need him to use that good time to learn to cope with the hard time.

You know, like everybody else. Funny that.

After all, waiting until a child melts down to try to address melting down isn't much of a help, is it? It is far better to teach someone a skill, rather than wait for them to fall on their face and then say, "oopsie, you should have done this, then you wouldn't have broken your nose!" Thanks for nothing there.

So we have decided he needs alternate educational placement, and are on the hunt for a school. The most poignant part of that meeting? Listing schools, to watch everyone frown and say, "well, that one won't be a good place for Joey..." Why? Because he's "too high functioning."

Except he isn't functional. That's why we are having to take him out of school.

What do you do with a child who is highly intelligent, yet has occasional behavior issues due to anxiety and depression? Where do you get them the mental health and behavior services they need? Where are the programs to address kids who are "high functioning" yet not functional?

Even if you could find such a program, who pays? Is this an educational program, or a medical intervention? Guess what. The schools will tell you its a mental health issue, to be addressed by medical insurance. Guess what the medical insurance tells you. Joke's on you.

In other words, there are cracks in the "system." They aren't the great yawning chasms they were only ten years ago, but they are too wide to always jump across. People get stuck in them. People like Joey.

You know that saying, if you can walk, you can dance, if you can talk, you can sing? Well, what if you can't? Where is the help to bridge the gap?

You can't enroll in a program that doesn't exist. You can't get a service that doesn't exist. All the money in the world cannot pay for an intervention that does not exist.  Those are the true cracks in the system- the services that simply are not out there. At all. Anywhere.

Then people complain that people get stuck in the system of dependence, welfare, government services... well, what do you with a child who is fine most of the time, but might melt down suddenly? Unless you can teach that child to cope, how will they ever get decent employment? How will they become a functioning, taxpaying citizen? Where are the services to help them overcome these lower hurdles, that are still too high for them to get over themselves? It is like the government building that has ramps everywhere, except the front door, where there is a step. Not a huge one, not a very big one, and only one, but there it is. Then they wonder why people in wheelchairs can't come in and pay their taxes, which have to be paid in person, no proxies allowed...

So don't read the comments in news articles. When you are caught in the cracks, you don't need to know how ugly and ignorant people are of them. You are too busy trying to claw your way out, with people who keep dangling ropes just out of your reach. You don't need more.