Friday, December 30, 2016

Our House for the Holidays



video

Thursday, December 29, 2016

Hello, Grandmom Ann!

Really. Call us.

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?