Wednesday, August 17, 2016

Some meetings are just Hard.

When you have a kid with special needs... support needs... differences that affect their ability to function in a world not designed for differences... well, you go to a lot of meetings, and learn a lot of acronyms, and talk a lot about challenges and supports and needs. Lots. Of. Meetings. You spend a lot of time telling your life story and your kid's life story to people who have half a clue of what you are trying to communicate to them, hoping that your narrative rings a bell in the room and gets your kid what s/he needs, and quickly. You have to make your case to a committee of people, often not knowing whether their goal is to help your kid or help their budget. Sometimes you know its all about that budget, whether it should be (or is even legal to be) or not.

To be honest, we have been very, very lucky. As hard a road as we've traveled, most of the people we have met along the way have at least wanted to try to help. Some folks were more sincere and stronger about it than others, and the more these people are for advocating for your kid, the better off your kid will be. We've had some people who thought they were trying to help, but actually weren't. We had a few people who honestly couldn't have cared less. We had a saboteur, but not as many as we have seen other folks have to deal with.

By far the biggest surprise has been out FAPT committee people. FAPT is the "Family Assessment and Planning Team." In other words, its the committee for social services that when you need services, you go to them and state your case. You get there if you need something from local social services. In our case, we landed in FAPT because Joey needed a special school, and they are the folks who pay for it for the school system.

They have been the most totally supportive set of people we have come across in our adventure.

When we go into the meeting, they want to know how Joey is doing. They want to know if the services they are paying for are helping, or if we need to do something else. They want to know if he is getting enough speech therapy and occupational therapy. They were thrilled when Joey wrote them a letter expressing how happy he was at school last year. They were thrilled when he made an appearance last month at the meeting. At least, they acted that way, so even if they were just being polite, it was appreciated.

Our case manager is the school social worker, who puts together a package to present before we even walk in the door, so often I am out of there in about fifteen minutes. How's that for a meeting?

The only meeting that is harder is an IEP meeting.

See, one thing you have to do when you are going to FAPT is you have to lay out the reasons you still need them to pay for these services and schools. You have to explain that yes, things are better, but we still have these challenges. They want to get him back into regular school, and you have to face the fact that this is not only never going to happen, but you have to explain it to the committee why this is where he needs to be. I was doing this every three months. Even for just fifteen minutes, you find your heart broken for your child. At least these folks say things like, "wow, you are doing a great job, glad this helping! What else can we do?"

This morning, I had to go in and ask for a something else they can do. It was the hardest meeting I have ever been to, ever.

Let me lay out the process for getting a disabled child mental and behavioral support in this part of the world right now. You have an issue, which may or may not land you in an emergency room or being reported to CPS. You decide it is time to call in extra help. You pick up a phone and make that call, the one that just tore you to pieces to have to make. They ask if you have Medicaid. If you do not have Medicaid, about 80% of the time, they may as well hang up on you, because they won't even really talk to you. Medicaid only. If you are waiting for a waiver, or haven't applied, you are just screwed. They do not even accept private pay. Medicaid only.

You finally find someone who takes insurance and/or private pay, or will at least let you talk about making an appointment. But they won't make that appointment, because you need to have a VICAP. This is the Virginia Independent Clinical Assessment Program, and what it means is you have to be assessed to see if you need mental health or behavioral support services. It is only done through the Community Services Board (local social services) and the BHA (Behavioral Health Authority). So you have to call the local social services board and try to get someone to do this. Once you get someone to understand what you are even talking about, they tell you that they can't make the appointment until you go to FAPT, because you don't have Medicaid.

They do not care that you are willing to pay for this thing. They do not care that you are saying your kid is in crisis. You MUST go through FAPT to get this assessment that you need because unless you have it, no one will help your kid, and he needs the help NOW, because what you are saying by even asking about this stuff is that your kid is a potential danger to himself and/or others.

No wonder people fail to get mental health services in this country. I cannot imagine being the person in crisis and having to navigate this mess.

Before you go to FAPT, you have to call and ask your medical insurance if they will cover any of this. Your insurance tells you that they don't cover this because your kid is too old. I have no idea what people do if they need behavioral support as adults (for example, if you have anger management issues or an alcohol problem). I guess you get Medicaid or go through FAPT, whether you like it or not, because that's the gatekeeper to these services. Or just walk into an emergency room and hope. I don't want to think about what happens if you start getting this kind of run around and break down, just trying to access services, even when you are willing to just pay for them.

So I go to FAPT, and have to explain why I need a VICAP for a 14-year-old that they saw just last month looking bouncy and cheerful. I had to sit there and explain exactly what we were seeing, what was happening, and explain that the danger was immediate and significant. I had to go into specifics I won't go into here, and incidents I won't write about here.

Some meetings are just Hard.

This was one of those meetings I left with an appointment for an evaluation and assurance of funding, and all I wanted to do was go home and hug my baby boy, and let him know help was coming.

A few days ago I was driving with Joey and Andy, I think we were headed home from Grandma's house, and I mentioned the possibility of therapy. I asked him if he wanted some new ways of dealing with big emotions- anger, frustration, embarrassment. We talked about what happens now, and I asked if he would like to learn to do something different. He said yes. Not his "yeah" that he gives when he's not really interested or listening but knows you want an answer and affirmative is a good bet. Not that "uh huh" of a teenager shrugging me off. He said, "Yes." He looked at me and said "Yes."

Sometimes I have to go through the Hard to help him get through the Hard, to get him what he needs to find the light at the end of that long tunnel. He is on board, so I got through that hardest fifteen minutes for him.

From here, let's hope the meetings get easier.

Saturday, August 13, 2016

A New Adventure: A New School

We are a whole week into our new life at our new school. Joey seems much happier, though he does say that his other school was better, but this one is OK. He's in a small class, and they seem to be very interested in getting to understand him.

I already have had my first phone call. Of course, there was an incident. Joey hit his head, and went into his usual attempts to blame and hurt back, because he got hurt. He ended by hitting a staff member. This school uses different terminology than the other schools we are used to; I think the title of the person who is the head of the campus is campus director, not principal, but that same kind of idea. So, the principal called to let me know Joey was upset and perseverating on being suspended because he hit a staff member; but that he is NOT suspended, because they don't do that- he is just concerned that Joey is so upset, and they are documenting the issue because being suspended for one's disability is abuse.

When I heard he had hit a staff member, I naturally gasped, because that has meant suspension before. This person's response was, "oh, don't worry, we got this. It's no problem, that's what we do, we help these kids when they make mistakes and need new strategies. I'm just concerned that he is upset, and may need to talk when he gets home, so I want you to know what happened..." Joey just went into fight or flight, and they will work on that after he gets adjusted.

Did you pick up on the awesome there? Joey made a mistake, that was no problem. His concern was not that Joey hit someone; it was kind of, "well, if he didn't make these kinds of mistakes, he wouldn't be here, so nothing to worry about there, he's still adjusting..." No HOLY COW HOW CAN WE MAKE THIS STOP!!! No "Joey should know better! He's doing this on purpose!" No "ACK! MY STAFF!" Nope. This is "we get it. We understand, he's anxious and everything's new and he's had a hard summer. Just wanted you to know so you can give him some support, he's upset." They were happy for tips on how to help him, but the concern, the focus, the whole of the conversation was: let's help Joey through this. Let's make sure Joey is OK.

Let me repeat that.

"Let's make sure Joey is OK."

If this is the course we are setting, I think I like this school.

Friday, August 05, 2016

What we actually did

Lest we think the summer was empty, simply because I got whiny...

We closed out the school year by saying goodbye to our awesome school, Helping Hands Academy. Joey is moving on high school, and new adventures in learning and growing.

My graduate.

We were ready to begin our summer adventures. Yes, I had big plans. Jamestowne. The mountains. Pennsylvania, maybe even New York- we didn't need to be back at 3 every day, so why not? We would just post to Facebook when we were headed out and if folks wanted to join us, great! But our first adventure, Jamestowne, got cancelled, and so the rest of that... well, fizzled out. 

But we had video games, and popcorn, and we aren't big fans of the heat, anyway. 

We had kitties to hug, too. Kitties are always good. Unless they sleep on you with their hot, fuzzy bodies and the A/C isn't keeping up. Then, well, at least they are cute. 

We had a few pool days, trying to keep cool and have some water fun. 

Colonial Beach is always fun, too, so we took a quick trip over to splash in the water and build some sand castles. We even met some other kids and played some water games. Then we had an awesome lunch at Ledos with pizza and chicken wings and cheese fries and everything!

But the BIG adventure lay ahead: a quick trip to Pigeon Forge! We had planned to go all the way to Granny Ann's, but those plans didn't work out. We had so looked forward to the trip that we decided to go ahead and take the boys to the fun stuff and introduce them to Pigeon Forge, where we had originally planned to stop overnight.

So handsome. 

We had an awesome dinner at the Mill, after a VERY long drive.

Everybody even let me go play in the Christmas shop. Joey braved the shop with me, and we looked at all the sparklies.

I think the boys preferred the WonderWorks, though. Lots of fun stuff to see, and play with. They got to pretend to be astronauts, look at stuff about magic, and even got their photos taken as Obi-Wan Kenobi and Anakin Skywalker!

We got to play pacman together as a family! Joey won the most games, but Andy ate the most stuff.

Andy also loved blowing super big soap bubbles!

There was even a little game arcade at the end, so they got to win some prizes. They also got to try Dippin Dots. They approve.

We were back in time for the Fourth, so there were fireworks and fruit salad (and a bit rain).

We heard the new Speed exhibit was open at the Science Museum, so we braved the heat and headed out to see the fun. Joey got to play air hockey against a computer (the computer won), and there were races to run (are you faster than a bear? Um... no. No we aren't.) and even a wind machine that simulated the wind of a hurricane! People were really nice, even when we got a little tired and had to walk around the rest of the museum looking for some quiet space, but it was SO exciting.

Then it was time for STEP-VA Theater Camp! Joey got the lead role this year, Milo the Monkey!

If you aren't familiar with Joey's favorite summer camp, they get kids together for a week and put on a big play. All the kids get parts. This one was specially written for the group. Joey loves to wear costumes and silly hats!

Joey's character Milo won the Golden Banana for being helpful. Andy won the Best Brother award for just being awesome.

My Milo Monkey!
We celebrated the success with another Ledo's lunch, and Dad even got to join us! The boys love it when Dad can come!

Another big adventure for the summer: Pokemon Go! Yep, Andy and I play. We are on Team Instinct. Gotta catch 'em all!

We had so much fun with Dad, we insisted he also come to our favorite Japanese place with us for a dinner. Joey still loves the "magic show."

But to be honest, much of our summer still looked like this. Well, not in this super-nice car. We rented this because all of our cars were in the shop for about a week. But in cars. We liked to visit Miller's Farm, and Grandma, and Cici's Pizza.

Joey also found a sport coat he liked, because he loves to look dapper and snazzy. A great Goodwill buy- another of our favorite places to hang out (well, we also like ReTail, because... kitties!) He picked out the tie to go with the jacket.

The porch is another favorite spot. SuperGoose still stands guard against impending llamas. Joey bought some large letters and painted them, they are his favorite summer toys.

We discovered a lot of the local farms also have ice cream! We like Miller's Farm's ice cream, and Braehead Farm's ice cream, and Yoder's ice cream...

Yep, stopped at Yoders on the way back from seeing the doctor in Charlottesville. Because ice cream! And goats! And yummy sandwiches!

Our summer also had some nice visits. We got to guinea pig-sit for a friend. This is Bacon Bits, or was we liked to call him all week, "Mister GUINEA PIG!!!"

Best of all, we saw some of our school friends. Joey was so excited for his friend N to come see him.


With all the excitement, we have spent most of August being quiet. Trying to stay out of the heat. Getting ready for school to start on Monday. So none of the wild and woolly adventures I had dreamed of, but summer nonetheless. Pizza, popcorn, RoBloks, Minecraft, and kitties. Can't really complain, now, can we?

Just When You Thought It Would Be Forever

.. And then suddenly, just like that, it was over. All the plans you had, all the dreams and expectations of fun and joy, never happened. All the experiences you had planned to share, all the trips and activities, all for naught. The craft kits lay scattered in the kitchen, where they never even gave them a glance, unmade and unwanted and unloved. Perhaps they are too old for them now. All the people you wanted to visit, but you got to see none of them. You had plans and back-up plans, but nothing fit the reality of your life. Even with the delays and extensions and no need to be back by three, none of it happened. 

Summer is over. Joey goes back to school on Monday.

Friday, May 20, 2016

Between Waking and Sleeping

Sitting in the glow, of the laptop, I spent a moment listening. The fan in the guest room needs some WD-40. The cat is snoring. Allan's sleep machine is in a steady breath rhythm.

Joey is having some trouble. Congestion. Sometimes he wakes up with a cough, and I listen. I have him set up in the recliner, so he'll be sitting up- easier to breathe. He swallows, semi-chokes on the congestion in his sinuses in his sleep. I listen. A little cough, but no bark. The breathing is thick, but consistent. I'd go to sleep, but I listen instead.

We went to see the doctor earlier. He was scratched by the cat, and it got infected despite our cream regimen. The doctor suspects cat scratch fever, but we'd have to do a test for confirmation. The treatment would be the same, so no point. He has his antibiotic. Since the scratch is on his face, I worry- the nearest lymph nodes are the neck ones, I think. I listen.

A little choke, but he recovers. I doubt he'll be going to school tomorrow. He can't be getting much decent sleep. I don't know if the congestion is part of the infection, or just an opportunistic something else. It's almost 4 am, and I have things to do tomorrow. I need some sleep. Instead, I listen.

Caught between the quiet waking and the quiet of sleeping, I listen to my baby, making sure he is safe. It's what moms do, isn't it?

Tuesday, May 10, 2016

Happy Blogiversary to me...

Oops. Missed it by three minutes.

Well, that was fun. Carry on.

Sunday, May 01, 2016

Where Awareness and Acceptance End- Inclusion Illusion

I was reading an article today, and nerves sang. The article was "Let's Be Blunt: The Illusion of Inclusion." The message was one we face: kids with special needs not only don't count, but are openly despised by the general population.

The truth of inclusion is that it doesn't really exist- and hence it didn't work for us. Joey is in a special school- and we wait to find out if he is going to be wait listed for the only high school program that can accommodate him next year that we know of (and what happens if he is wait-listed? Where will he go? How will he get an education, and access his RIGHTS?)

Even the "inclusion classroom"- which is really a special-needs classroom where kids just require less support or can be pulled out of the classroom for services they need- didn't work for Andy, and we had to pull him from school altogether. The attitude of "you are taking resources from NORMAL kids!" is so prevalent and ingrained, we don't do any real inclusion. My kid is seen as a project, a nuisance, a threat, a drain, an "inspiration", an idiot, a distraction... instead of as a member of the community, a child, a human being.

That ingraining comes out in so many ways, from so many directions. People think nothing of insulting your kid casually, and then getting mad at you when you try to make it stop. They tell you to leave spaces because they think you have no right to be there, to exist as you are. They judge you, often openly and loudly, in public places. That people think this is OK is just insane. Cruel. Heartless.

I will never forget sitting in the rows of parents at the spelling bee. Third grade. Joey introduced himself with his typical flamboyance and joy. They laughed; not with him, but clearly and explicitly at him. The attitude was clear, and voiced in plain English: oh how cute, they let a retarded kid up there. Isn't that sweet. Poor kid, making a fool of himself, why do they do that? The assumption of his intelligence- that he lacked it and didn't really deserve to be on that stage- so clear. They didn't notice me there, saying nothing. I'm a big lady, but this isn't unusual. I am often the Invisible Person. I assume these other people knew each other, and they certainly did not know who I was. I assume they weren't deliberately cruel and mean.

By the end of the bee, they were out of their chairs, cheering for him. If the last round of a spelling bee worked like all the other rounds, he would have won- but you have to spell an extra word. And when he missed it, he got flustered and decided to bow out. He deliberately mis-spelled the next word, when the other two contestants were brought back, even though they had mis-spelled their words and he had spelled his correctly in the next-to-last round. Changing the rules confused him, made him frustrated and angry, and he was done. He bowed out. But he had shown those idiots in the crowd that their assumptions about the special needs kid not deserving to be on that stage were totally wrong.

They knew he had won that spelling bee.

I often wonder if they took the lesson to heart, or if our society is so ingrained with discrimination against those with differences, those who require different things from society, that they just went back to those comfortable old assumptions. The ones supported by society, by media, by comedians, by schools, by legislators, by businesses, by politicians, even by the medical establishment(and these links are just examples or information I could dig up on the fly). Did they imagine him as an inspiration porn meme, or did they actually go out and change their attitude? Will they now really include him, and people like him, or did we just make it worse- spread the stigma by counter-example?

Joey is a human being. Andy is a human being. Guess what? So am I. So are you. Let's all start acting like it. We are all in this together, and none of us make it out alive. Treat others as you would wish to be treated, no exceptions. Why is this acceptance thing so hard for everybody? Would you want to be the kid that gets laughed at, left out, segregated, and left behind to rot? Can't we even be inclusive of ourselves?

Friday, April 15, 2016

The Good with the Bad

Most days with Joey are good days. He's happy. He feels safe at school. He likes to learn new things, and show off what he knows and can do (just ask him a math question...) He's discovered imagination and Star Wars and healthy eating. Let him script and do his thing, and he will skip through the day being Awesome and trying to bring you along in the Awesome. If feeling slightly off, he may script more, or turn to his favorite video game (which currently involves making cupcakes).

Then there are the bad days. Usually he's not feeling well- it can be hard to know when Joey is sick, or tired, or just grumpy, because he's working so hard to be happy and to please everybody and be perfect. When this fails in his own eyes, the spiral begins. He thought he was playing, and you mistook his action for something aggressive or inappropriate. He accidentally knocks something over or spills his water. He stubs a toe. He gets something wrong on an assignment. These little things become a straw upon the camel's back, and once it breaks, we have a Bad Day.

Joey has a lot of difficulty recovering from a Bad Day. He can't just let it go, calm down, or start over. He can't shrug it off and turn it around on his own. He needs help. Sometimes he just needs a nudge in the right direction in the right way. Sometimes he needs a lot of support and patience. Sadly, there is little knowing which it will be right this minute in the Bad Day, and if the spiral continues, we are headed for meltdown. It builds. The steam doesn't really release; those early signs of spiral are just more pressure. He knows this isn't going well. He doesn't know how to change it. He can't stop the spiral, either. The frustration of continuing to "do it wrong" bursts out as self-deprecation. Too often, this has turned out badly, very, very badly, and so he has now cut to the chase and started in himself, knowing from experience that this is a Bad Day, and there is nothing he can do about it now.

In the regular school, Bad Day meant write-ups, suspensions, punishments. Even if he was allowed to recover, after about 20 minutes- when he was outwardly looking better- he would be sent back into the frying pan; no one understood he needed much more time, that this was more like a seismic affair, complete with growing quakes and aftershocks. The blow-up is the center of the event, not the beginning- or the end.

Joey has internalized this criminalization of being overwhelmed, of being unable to recover without help, of spiraling without brakes. The frustration of it makes him more aggressive, in trying to get out the fear, the frustration, the explosive energy of the anxiety of I Did Something Wrong and Now They Will Hate Me. That aggression can turn into flight. Without flight, it becomes fight. Will be bite his arm? throw something? posture aggressively towards another person? There is no way to know how that fight will play out.

On those Good Days... the majority of days, when things are quiet, and Joey is humming along doing his thing and being himself and starting to store up those little irritations and straws up on his back... those days, he can do anything. He could move mountains and conquer the world. A flash of that grin and a high five and he melts all hearts.

It's on the Bad Days that he needs the support, the help, the extra time and patience. It is on these days that often Joey, and many like him, get exactly the opposite. Instead of understanding that this is just part of Joey (everybody has bad days, after all- you don't stop being their friend just because they are having a bad day, right?), he's treated as a broken thing. A you-aren't-Joey-today-what's-the-matter-with-you monster, instead of a kid having a bad day. If you were having a bad day, wouldn't you want your friends to cheer you up, maybe pop in your favorite movie, bring you some flowers or something? You certainly wouldn't want them to scream at you, tell you to leave, turn you away, or punish you. If that became the regular response to you having a bad day, you might start being self-deprecating, too. That's what happens to people who are emotionally abused, day in, day out, even by people who have no clue what they are doing or that they are doing it.

Recovering from this kind of grueling abuse is a long road, even when the exposure wasn't long at all- it doesn't take much to grind a child down. Several years of school is not a short time, and we are just beginning our road. I am grateful for his school, where people are understanding Joey and trying their best to help him, instead of just punishing him for having Bad Days- even a spate of them. This understanding and effort is the first step in teaching Joey how to cope with Bad Days, how to build a toolkit to respond to (and even prevent) getting overwhelmed, and giving him some brakes for the spiral. Without this first step, there is no way for him to understand, because he reads loud and clear that he is, as a person, Bad, since you are refusing to help him and are punishing him for being himself, and trying his best. When a child does their very best, and it isn't enough, you don't slap them.

You help them.

That is how they learn to be independent and confident in their growing skills.