Wednesday, December 10, 2014


When Joey was little, he came up with phrases that made him feel happy. Very often, by the time he started repeating them, the words were lost in a pool of sound, but they made him feel better, even cracked him up. It has been a while since we have heard one of these happy scripts, where he would repeat it just for the feel of the words in his mouth, and giggle hysterically.

Today, we have two.

"Steal Olaf's nose and feed it to Sven!" he chimed at me this morning. This was a vast improvement from yesterday, when he woke up grumpy and let me have it double-barreled from the get-go. The hysterics followed. I can still hear the fuzzy edges of the words, a sort of stuffy sound that I now recognize as the apraxia- but also a cue that the meaning of the words don't matter. It's the sound, the cadence of the words, the sharp rhythm that entertains him. The words no longer go to mush; this is a Frozen reference. Where the exact phrase came from, I don't know; always before, these phrases are ones he had heard, and became enchanted with the sounds. Certainly, it is a script, but the source this exact line is lost to me. Part of me hopes he has made it up himself, heard it in his head.

Scripting has become a problem most of the time- both of word and action. Stealing items as a "joke." Repeating "grounded" over and over- referring to punishments. Negativity, self-denigration, and depression have been a running theme. Profane language has become commonplace, and trying to correct it, vain. When I hear about police using force against people simply because the people used bad language towards them, my stomach does somersaults of fear. He bolted form the house twice this past week- what if a police officer had found him in that state?

I welcome the return of soundification. To celebrate, I turned on Frozen for him this afternoon. Then I gleefully listed to him soundify and giggle for an hour.

Music. Sweet music.

Saturday, November 15, 2014

A Study in Boy Face

What difference does it make to have support, appropriate teaching, appropriate education settings and levels? What difference does individualization and understanding make? 

It makes for these.

Tuesday, October 21, 2014


Well, here it is, October. The seasons change, the light slants through the sky at different angle, the air chills, the leaves fall, and Joey goes bazonkers. I am pretty sure the season change is part of the problem for him, because we have the same thing happen in the spring. When Joey gets off-kilter with the change of season, he can't help it. He feels it, and his frustration goes up, he goes into severe silly moods, the swings of mood can be dramatic. He doesn't like it any more than anybody else, but he also has no where to go with it.

Add onto that puberty. Then, a new school, and problems with regulation associated with change and increased academic demands. Plus, now that we think he is starting to trust the people around him, he is starting to try to process and express a lot of feelings, frustrations, and experiences for which he has no words. Yeah, I think you might go a little nutty, too.

This is the moment that tries a school's soul. For the last few years, that soul has come up wanting. And when the school comes up wanting, it is not longer a safe space- and the spiral goes rapidly into the vortex from there. When he starts acting out and expressing fear and anger from years of bullying, frustration, and difficulty communicating, how do you respond? Do you lecture him, suspend him from class, punish him? Most school settings do. What have you taught him when you react in a way that is punishing, negative, hard, cold?

That he can't trust you. He can't rely on your help, because you aren't going to help. You are going to punish, and just expect him to swallow all that horrible down. He learns you want him to shut up and go away.

We had our first blow up at school. What was the attitude of the new school?

Let's make sure he is safe. Let's give him ways to tell us what he needs. Let's make sure he has space to calm down, decompress, de-escalate. Let's teach him some new coping mechanisms. Let's find out what he is feeling, and help him express it. Let's hire some psychiatric help so he gets some support and therapy for what he is experiencing and feeling.

No panic. No suspension. No "he's got to have negative consequences for this!" No "I have to keep my staff safe!" with the implication of, "your kid is dangerous!" They shifted the positive reinforcement back to shorter time expectations, to give him time and support to learn new strategies, process, and re-adjust. The gave him time to calm down, then engaged him in a discussion of what choices would be good choices when he is feeling overwhelmed, scared, sad, confused, or even super-silly. We talked about things he finds calming, and how to make sure he has access to things like pictures of his cats, squish balls, and favorite games.

How's that for a whole new world?

And the result? He came home happy as a clam, saying he had a good day at school, and talking about Mom visiting and playing games with his classmate and teachers. He's still happy to go back to school and give it another try, every morning. Today wasn't a good day, but tomorrow is a new day.

He still feels safe and loved. That is the attitude he needs to succeed.

Saturday, October 18, 2014

Our Latest Adventure

As if I have lots of extra time for writing blog posts- evidenced by the lack thereof here- I have started a new blog for Andy's homeschooling and our experience with it. The Learning Squirrel will be chronicling our Adventures in Educating. Here's hoping it will be awesome.

Monday, September 15, 2014

The Elephant in Room

I did a little experiment this week. I commented on a story about Kelli Stapleton. For those who don't follow news, Kelli Stapleton attempted a murder-suicide of herself and her 14-year-old autistic daughter, Issy. She was well-known in the parenting circles, and a friend to many people I know. Like many such stories, this one has gathered a very specific rhetoric, the "for Kelli" crowd and the "anti Kelli" crowd. That rhetoric has become so strong and loud, it has drowned out any other ideas or voices, and everyone is expected to pick a side and then be torn to shreds by the other.

It isn't a very useful conversation.

Murder is not acceptable. Attempted murder is just murder that fortunately wasn't successful, so as far as I am concerned for these situations, the same thing. Murder was the intent. You don't kill people. I don't really care what excuses you try to give for that as a defense. It isn't one. The fact that I even have to say this shows how loud and strong this "for Kelli/anti Kelli" rhetoric has become.

What I found interesting in my experiment is the complete lack of interest in talking about the broader issues, about anything constructive, or about Issy. Every time, the conversation was turned back to "Kelli bad!" or "You're making excuses for Kelli!" I don't want to talk about Kelli at all. Plenty of people are already doing that.

I want to talk about Issy.

The subnote to the "for Kelli" contingent is often a call for "services for the family" and "support for the family." This often seems to be mistaken by the anti Kelli contingent as "support for the parents," when it appears what is meant is something more generalized as services.

Support is actually more than just services. Support is about acceptance, community, and feeling loved and welcome. That is what is needed.

However, what I suggested- and was choked out by the rhetoric- was that we don't need this primarily for the family, and not having it for the family is not an excuse to murder anyone. The person who needs support is the person with the disability. Issy needed that support. She needs that support. She didn't get it.

All too often, persons in our communities who are different, who have disabilities, don't get that support. You send them off to whatever is available for as long as you can afford, and hope. There is little mechanism for intervening and advocating for them if that is needed to keep them safe. Not just the Stapletons, people- in general. We need to talk about getting people help.

Getting that support in place, and in the community, is constructive and supportive long before we get to murdering them. Reduce the exposure of vulnerable people to abuse, violence, and murder, and you might find fewer are victims of abuse, violence, and murder. Reduce their frustration and help them learn and grow, treat them with respect, and you might find less frustration and instability in the first place, all around. Give the support, and the world becomes manageable.

Put the focus on the people who really need the help and support, and the other issues fade back. Improve the lives of people who need a little extra care and service, and their lives actually improve. It's an amazing thing.

But no one wants to talk about it.

And lest you think the static is just in the Stapleton case, check out the other cases in the news. If you want to see extremes in making excuses, check the case of the murder of Jude Mirra. Check out the rhetoric in the murder of Robbie Robinson (you have to search his mother's name, Angie Robinson, to find the stories... how sad is that?) Look at the story of Randle Barrow. Think of Alex Spourdalakis. These are just cases involving autism- but autistic people are not alone in this, they are not the only people being murdered, and their disability blamed. Where were the communities? The advocates? The interventions? The understanding? Read the way the articles are written- they feed into the pro-murderer/anti-murderer rhetoric. The murdered people are often barely mentioned, their full names subsumed under that of their killer.

Support isn't just services- there needs to be an entire social mountain moved.

We need to think about how we support people and think about each other. We need to learn what acceptance really is. We need to start with ourselves, because you can control the way you think, you can take responsibility for yourself. As we tell our kids and ourselves all the time: your are responsible for your body and your words. Learn how. Start now.

Friday, September 12, 2014


We have two new fur babies. Joey has been so excited about getting his very own cat, especially in the throes of still missing Luna. We finally brought them home.

This is Joey's kitty, Lily. She looks suspiciously like Luna.

This is Andy's kitty, Marshmallow. She is totally not shy. At. All. And she approves of the changes in her fortunes. 
At long last, we found our kitties, and Joey was looking forward to seeing her home safe when he came home from school. Andy and I picked them up from the shelter, and took them directly to our vet (do not pass Go, do not collect $200), and had our vet look them over top to tail. Lily was very good, letting her nails be clipped and the vet handle her. She got a clean bill, though she had some tartar on her teeth that we removed. Marshmallow had evidence of an earmite problem, but no mites. Her ears had not been properly cleaned from it, however, so she has a little yeast in the ear folds, very uncomfy. Our vet cleaned them really well, and treated them so the yeast will go away. Neither had any sign of fleas. Then we gave them both a monthly Bug Treatment (fleas, heartworm, mites, etc all covered by the treatment), just in case and just because its a good idea, and home we went to introduce them to Ellora.

Marshmallow has proven a bold beauty, looking over the house and already interacting with her new people. The only thing she's not totally approved of is the food, because hey, she's a cat. Fancy Feast just ain't fancy enough for her (or familiar enough for her). She jumps up and says hello, and has been very interested in Ellora.

Ellora wants Nothing To Do With Her. She comes over and stares at me, with the look of, "Mom, what did you do? There are whipper-snappers in my HOUSE!" I believe she is plotting my demise.

So Joey came home to Marshmallow out and about. But where was his Lily?

We found her. She has found a little space under a kitchen cabinet, and has tucked herself in there. The shelter said it took her a couple of days to calm down there. We expect the same here, if not a little longer. Everything new, her world torn up again. She was a turn-in; a family deliberately gave her up. The papers said she "didn't get along with the other cats." It also said she was in a house with five other cats and three dogs. The shelter had no problems with her and other cats, but noticed she hates loud and sudden noises- so we suspect she was terrified of the dogs. No wonder she's anxious. This is her third home, and she is smart to be wary. She's overwhelmed by the changes.

Joey was bitterly disappointed. He wanted to be able to pet his cat, and feed her, and show how well he could take care of her. He began to perseverate, to spiral into the abyss of disappointment and grief. All afternoon, he was so sad. At first we couldn't find her at all, then we found her tucked under the cabinet. I got her to nibble some food for me, but otherwise, she was not ready to come out to say hello. Joey was devastated. He sat downstairs, trying to coax her out. He managed to get her out for a few minutes by tempting her with treats, but then she ran back to her hole. He was beside himself, thinking he was doing something wrong. We kept assuring him that she would come out, he just needed to give her time. We tried to get him to think about how he felt when he was upset and scared, and get him to understand the cat was feeling this way. He wasn't buying it.

We finally got him calmed down enough to get him settled into his room for bed. I came out a little later to check on him. He was in his bed, reading his dictionary, surrounded by his stuffed Mario and Frozen characters.

"Are you OK?" I asked, and he returned the standard "um-hm" of "I know you want an answer but I don't want to deal with you."
"Do you want me to sit with you a while?" I offered, as this is sometimes something he likes when upset.
"No, I need my alone time."
"Oh," I nodded, giving him a smile. "Well, I just want you to know what a good job you are doing, taking care of Lily. Sometimes, taking care of her means leaving her alone for a little while."
"Like me telling you I want my alone time?" he brightened.

By George, I think he's got it. 

Saturday, September 06, 2014

Week One of the Big Changes: Success!

I have to say, one week in... well, half a week, since Joey started school on Wednesday, so that's also when Andy and I started official lessons... and so far, so awesome.

The first week of school for Joey the last few years has always been... well, a disaster, really. This year? His teachers allow hugs. They help him, they guide him, they make it clear what their expectations are and provide him tools to meet them. They are busy teaching him those tools right now. He gets the attention he craves, and his fellow student thinks he's the bee's knees, and doesn't tease or otherwise make fun of him. Into Toy Story and Frozen? No problemo. You like words? Cool, let's look at word roots and definitions. You get the picture.

The result? Happy Boy who wants to get up and go to the school in the morning, two morning in a row, first week. Wow. More spontaneous speech. Telling himself stories that are not just scripts or episodes he's already seen. Half a week in, and I get the feeling that by the end of the year, I may have my Joey on the right track.

School for Andy has been a struggle of tears the last few years, anxiety of bullying from both students and unempathetic teachers. His third grade teachers figured him out. Last year's teachers never did, and I think they just wrote him off as a spoiled over-sensitive brat. Summer has been something of a struggle to get him used to home learning, and finding out interests we can target for interest and pleasure in learning. Saying "learn" around him risked shutdown. Asking him questions risked shutdown. I was getting very worried that this might not work, and then what to do? Sending him back into the hellhole is not an option, to be honest.

We talked. We looked at some materials. We toured the town and the resources for local field trip opportunities. He actually asked to look at some places, to get out and explore some. He asked to see the local museum. We read Ichabod Crane together, set up a game that teaches scientific method, and even did a straightforward math lesson, at a table and very traditional. No, it wasn't all sunshine and roses, but he did it. He showed interest. He demonstrated understanding. I think by Christmas, when his "deschooling" should be complete, we should be able to really get into what he needs to move along. Here in Virginia, he needs to pass an eval at the end of the year (either a portfolio or standardized test), so we will likely need to continue with math lessons in a more traditional way- I'm not really familiar with any other way to teach it- but we have plenty of resources here to make history, science, reading, grammar, writing, arts, etc. relevant and immediate. BY the end of the year, I may have my Andy back on the right track.

Folks, that's starting the year with a Win.

Let's keep up the good vibes.

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.

Thursday, May 29, 2014

Please stand by

I look over the charts, the data, the evals and explanations and IEPs, my son's life in black and white and red all over. I ponder how much of this information is accurate, how much is not, and how much gets steamed out by pressing all these numbers onto a piece of a paper in a printer.

It's a big IEP day for us. With all the depression, the anger, the helplessness, the sound, and the fury.

I may not even get to tell you today what is happening, or why.

I just wanted to send a thank you out to my readers for being here with us today. For caring about us. For reading along as we clack up the hill on the roller coaster, and remind us to hold on tight.

Or open our eyes and put our hands in the air.

Please stand by. 

Saturday, May 24, 2014

Living Joyously and Laughing Freely

Happy anniversary to my love and my joy, Allan.

Seventeen years in the blink of an eye. Love growing with you!

The world has been more limitless than we imagined. So glad to have you as my partner in exploration.

Friday, May 23, 2014


It's Friday. The week has been one of those hard ones that make you really want to just hug the boys tight and let them know you love them, no matter what is ahead. There have been ups and downs and stress and meltdowns and tests and rocking of the boat. I spent last night typing up a comparative of Joey's school evals over the last 10 years. He's been in school 10 years. I spent one night looking over Andy's IEP and an afternoon in a fruitless conversation with his principal.

Joey hops off the bus. He starts talking about the weather. He wants to know where Luna is. I follow him into the house. My knee isn't going to bode well for a walk today.

"Mom, let's watch Frozen."

I hadn't seen Frozen. I've been putting it off. It's about siblings. Somewhere in the world, I have a sibling. You can see where I might put this off.

But Joey wants to watch it, it's Friday, my knee is bad. He wants me to see it. His teacher likes it. He asked for it as a reward for having a really good week and doing some cleaning and getting honor roll not long back. He starts singing a song from it. I turn on the TV.

Halfway through, he starts singing again. Then he starts the processing, out loud and in the air between us. Joey has trouble with this kind of intense emotional processing, and he immediately starts attaching his world to the characters in a distressing way. His cheeks begin reddening.

"I'm like Elsa," he starts. "I've shut Andy out. I'm dangerous!"

Two minutes later, it's reversed. Andy is Elsa, and Joey is the one "shut out." Then I'm accused of "shutting him out." He understands the pain. He understands the words. He tries to attach them to something concrete, something he can relate these emotions to. He understands his role as Elsa, and hiding himself. He goes outside and sings.

We work through the hurt. I have my own feelings about who to attach to these roles, push it aside to stay focused on Joey, and Joey's processing. We talk about why Elsa hurts, why we don't ask him to hide who he is. We love him and want him to be who he is. I try to assure him that he is far more like Kristoff than any of the other characters: brave, competent, caring.

"Andy doesn't love me." He begins to spiral. I can't stop it. I can assure him that we have true love for him, that momma does. But he insists that Andy shuts him out.

I call up the stairs. Andy's head appears.

"Andy, come down here a sec," I coax him into the den, then turn to Joey. "Well, here he is. Ask him yourself."

"Andy, do you love me?"

"Of course I do!" is the ready answer, and Andy hugs his brother.

"It's true love!" Joey clicks the understanding in place, hugging Andy. "And you'd die for me?"

"Well, duh," Andy replies, releasing his brother as a matter of course, begins his own pacing. Yeah, they're brothers. And it's True Love.

The clouds break up. Joey starts singing again. He's being Elsa. He's making his own "windstorms." The pain, however, is gone. It's a feeling of power that replaces it, a fun in pretending to toss wind and ice about, to sing a song about freedom to be yourself. Joy returns to the singing.

Andy goes back upstairs to play with his Pokemon cards. Joey goes out to the yard to sing. Outside, I can hear the refrain.

Here I stand. And here I stay.
Let it go.

Wednesday, May 21, 2014

Happy Birthday, Andy!

When did he grow up so big???

Thursday, May 15, 2014

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.


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?

Wednesday, April 30, 2014

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.

Sunday, April 27, 2014

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!

Thursday, April 24, 2014

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.

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.