News from my groundhog

Well, folks, today is Groundhog Day. In case you are not local and don't know, I have a very large, very fat groundhog that lives in my own back yard. Yes, he looks delicious, thanks. Very fat and sassy. (See him? Doesn't he look delicious?)

Today, he has predicted early spring. I didn't have my camera this morning (the photo is from a couple summers ago), but he was out, about, and waddling happily about my yard this morning. Smart groundhog. It was 75 degrees here yesterday, and its supposed to be just as warm today. Then it should fall back into the 50s. I am going to have Mosquito Madness here this summer!

So, folks, that's the scoop here from Fredericksburg Flemming. Get ready for your daffodils. Trim your roses. Plant your lettuce. Then let the groundhogs eat the lettuce.

A Chord Once Struck

I remember That Meeting.

We were in a preschool classroom, and the topic was ESY. We had covered for the school the year before by placing Joey basically in daycare, and we knew it didn't really work very well. We came with the idea that we would be discussing Joey's issues of the year and how they might be addressed, and the need for him to have year-round service. We knew every educational study done supported autistic students having year-round services. We knew the government offices published guidelines that recommended year-round service for autistic kids. We knew the doctor, the speech therapist, and the OT were recommending summer services. He needed structure. He needed focus. He needed school.

It wasn't an easy thing for us to give him up, but we knew that everything was pointing to this being good for him, so we would lose a lot less time in the fall. Time was, after all, the enemy. We had none to waste if we wanted the best possible outcome in the long run. We came in to the meeting, sat in the half-sized chairs around the low table, and the meeting began.

And the school OT pulled out a color print-out of the state guidelines for ESY, and started noting how Joey met none of the criteria, mostly because he wasn't showing regression.

We were absolutely blindsided. Do you know what color copies cost? Here was a professional, going against everything we had, everything that we had ever heard of... and though regression was not the "only criteria", it seemed to be the elephant on the page.

Hindsight makes that meeting even worse, because I know now that Joey did, in fact, meet the criteria on that page. We were just too ignorant at the time, and not quick enough, to be able to throw it back in her face.

We have all had That Meeting. The one where the people who are supposed to be helping you actively sabotage you, and for no good reason you can see. Malice? I still wonder if there wasn't malice in our meeting, for that OT had already proved to be incompetent, I had already parked my butt in her boss' office to note it. I still remember going to a private OT and discussing things the school OT had said and done (and not done), and the utter shock as the private OT said, "if what you are telling me is true, that is a major breach of ethics! Your OT could lose [thei]r license!" and knowing that reporting the OT was going to do no good. We had already tried that route.

But sometimes it isn't malice- or at least, not conscious malice. Often, it is ignorance that fuels That Meeting. We expect professionals working with our kids to be... well, professional. The ignorance can be a shock. It bowls you over and stomps you into the dust. Did that person just say that? Really? They know better! And they are in a position that leaves us caught in a game of politics, or policy, or whatever, leaving us powerless to get around this person. We find ourselves at a roadblock, often unexpected, and have to think quick to come up with alternative paths. When someone actively sabotages you and your child, it can be an exercise in futility, frustration, and ultimately, creative problem-solving. How do I get around this person to make sure my child gets their needs met?

For us, the answer was lots of OT camps and speech therapy camps that we had to pay for ourselves. There wasn't time to go o Due Process- summer was upon us, and Due Process can take years. It also takes money. We now needed that money to pay for therapies. OT camp isn't like Summer Camp. It costs a lot more. But we- and Joey- were fortunate. We could take that option, even though it wasn't really enough.

The next year, the regression from summer couldn't be ignored. The stress couldn't be ignored. The slamming doors could not be ignored. We got ESY.

But we all know That Meeting. I don't think I have met a special needs family who hasn't had That Meeting. Unfortunately, most of the families I know have had several. We've been pretty lucky in avoiding That Meeting, but we have seen ignorance from plenty of people who should know better- whose JOB is to know better. What is scary is when some parents have That Meeting and it is the life of the child at stake. Educational issues, I can come up with Plan B, C, and D. For families facing serious medical issues, That Meeting is catastrophic. It is a life or death moment.

That is why I am glad to see 18,000 signatures on a petition against That Meeting. When you know you are not alone, and we take a stand against That Meeting in its most terrible form; that is the power of letting someone know the catastrophe is upon you. We've been there, and we are, as a community, saying: No More. Stop the ignorance. If you are a professional, act like one. Don't be the ignorant obstacle at That Meeting. Do. Your. Job. And do it in a professional, appropriate manner.

Go Team Amelia. Here we stand.

The Fight for Amelia

In my last post, I noted the post where Amelia Rivera's parents were told by a doctor that Amelia did not have a right to live because she is "mentally retarded" and "brain damaged." I was right. I didn't get any sleep that night. The thought that there are people- professionals who are supposed to be familiar with disabilities and the rights of people with disabilities- is terrifying.

Note I didn't say "surprising." Unfortunately, we know better. We know the ignorance remains, even in people who should know better. Who are trained to know better. Who we trust to know better. Even people who say they know better.

That is why the fight for Amelia is so important. There is no excuse for anyone to deny someone the right to live, especially by denying them appropriate medical care and service. Professionals of a children's hospital know better. If they don't, the hospital should take measures to find out why, and make sure everyone on their staff knows better, and believes that all people are due their basic rights.

Not just the doctors, nurses, and social workers, either. Everyone. The administrators, the assistants, the janitorial staff, the cafeteria staff, the volunteers, the secretaries... everyone.

Disability is no excuse for denying a person- no matter their age or your assumptions about their "quality of life"- the right to live. People with disabilities are already actively targeted for bullying and crime; they don't need to be targeted in a hospital, when they are trying to get medical care.

This is important. Today, it is Amelia. Tomorrow, it could be Joey. Or Andy. Or you.


To see a list of more posts written for Amelia and disability rights- such as the right to LIVE- check out this site.


And please: sign the petition!

Nightmares

I am not likely to get much sleep tonight. I read a blog entry about a child denied a life-saving kidney transplant- from a family donor- because she is "mentally retarded" and "brain damaged."

That is a nightmare I have all too often: that Joey might be denied medical care because someone deems him to have "low quality of life" because he is autistic. It is a very real and near fear. After all, we have to fight- often fight hard- for people to respect his right to an education. We had insurance that denied his right to certain therapies (fortunately, JoeyAndyDad got a new job with new insurance!). In other words, we fight every day because there are people that consider Joey to be less than human, a waste of resources, a drain on the "system." Because he has a disability, there really are people in this world who consider him of less worth than... well, themselves.

I spent the afternoon in Joey's class today. It is always an experience that blends hope, amazement, pride, joy, love, and depression in measures, and comes out as something that makes me think hard about what life means, and its amazing value. I am not at liberty to divulge the variety of issues and the range of stories behind the lives of Joey's classmates, but I can tell you that each and every one of them is an incredible human being, doing things that are nothing short of miraculous. And many of the stories are, at the same time, desperately heartbreaking. And some are all the more heartbreaking because there are people who think these kids are, basically, junk to be tossed away. That anyone could look at any of these children and not see how utterly amazing they are in the face of their challenges and because of their amazing talents is just... mind-boggling. And incredibly sad. It even makes me angry to know what some of these kids go through every day, because there are people in this world who think they have no value.

That someone might deny any one of these children the right to live is something we should all actively, aggressively, and positively fight, every day, every minute. Such denial is a shameful manifestation of evil in this world. It is up to us to fight it with everything we have.

We live in a country that recognizes everyone's right to life, liberty, and the pursuit of happiness. Nothing in the Bill of Rights says we have to take an IQ test to have those rights.

All taken care of

One of the strangest things people say to me when we talk about Joey is "God has a special place for you in heaven!" or the now-more-common, "God will reward you!" No, really, That's just... odd to me.

Now, I know some folks get very offended by such statements. I don't. I understand that the person means to be friendly, comforting, and sympathetic to my role as a parent of a child with special needs. Sometimes it is hard to have a conversation with someone, and hear about hard days, and know what to say to a world that is totally outside your experience as a person or a parent.

I used to say "thank you" and move on. Now I have a new answer.

"He already has! He's given me my boys!" And my life. And my husband. And my mom. And my friends. And...

People seriously need to get into the groove of thinking about my kids as the lovely, beautiful people they are, as the precious gifts they are- and not just to me, but to the whole world. Each and every one of us- we're gifts. We have the potential to do so much, each and every one. It is up to us to do our best to show our gratitude by helping the world be the wonderful, beautiful place it can be.

So that place in heaven? All taken care of. Right here, right now. Thank you.

A Growing Problem: Curbing Anger

Joey is getting big. Like, big. He's nine and a half, and he's going to be a big man- even if I get his weight under control. We are starting to really understand the issues that come with being the parent of an autistic young man. For one, if he loses control, he could really hurt somebody. Like me. Or like Andy.

I know I often leave off the blacker side of living with Joey, and trying to help him, but I am realizing that many more of us are dealing with issues of temper and anger than perhaps we want to admit. It is a challenge to teach any child about controlling frustration and expressing anger in ways that are constructive rather than destructive. Trying to teach one that has issues with communication in the first place? Then add a daub of impulsiveness to it? Now add some not-so-healthy depression? Holy. Freaking. Cow.

Honestly, I am finding myself at a loss. Trying to discuss the issue with Joey is a super challenge that I am finding myself struggling to meet. Joey does not cope with criticism well, and starting the spiral into "I'm a bully! I'll never...!" makes it that much harder to try to get him to understand; and until I can get him to understand, I'm not sure how I can get him to help me understand.

I know that didn't make much sense. What are we trying to understand?

Both of my kids use communication system we call Engine Run to help others understand how they are feeling, to get in tune with their own regulation issues, and learn to self-regulate and manage. Basically, you think of your emotional state and body as a car. If your engine runs too high, you can crash or go flying off a cliff, or get into a speed-related accident. Not good. If your engine runs too low, you block up traffic, people honk at you, and you don't get where you need to go. You want to get your engine running just right. Then, the program works on teaching kids what kinds of sensory integrative activities and strategies help them for when they are running too high or too low.

My problem is when Joey goes from running a little on the high side to running white-hot HOLY MOLY and crashes off the cliff, what do I do? And how do I prevent it from happening again? Or at prevent him from hurting himself or anyone else? This is a question not only of what to do in the white-hot moment (restraint), but also prevention (de-escalation).

The other day, we came home and he was upset with me. I can't even tell you about what now, probably I had to take a toy or a stick from him. What I remember is standing at the door of my house, trying to turn the key, and getting pummeled. Absolutely pummeled. I had enough sense to get his arms and keep him from running off down the street, getting the door open, and screaming for help from JoeyAndyDad. Being chubby likely saved me from having major damage to my arm, he was slamming me with his fists so hard. I'm surprised none of the neighbors called the police. We got him inside and into his room. We got Andy inside and checked on him, because talk about scary! And of course, ten minutes later, Joey had another melt because he realized what he had done, and that I was hurt. All I could do was hug him, and get him through another round of "I'm a horrible boy!", which can only be countered with assurances otherwise, and lots of assurances of love.

But I knew right then, I was in trouble. Deep trouble.

I have had to ban Mario Brothers from the house for a while. Both boys get so over-excited that it becomes dangerous. They play away fine, and then some small issue rears its ugly head, and danger strikes. Someone gets hit. Someone gets kicked. Joey flew at Andy an bit him so hard on the shoulder he left a bruise- I'm surprised he didn't draw blood. It was like watching a tiger attack, and just as lightning-fast... and terrifying. And horrible. How does one get across the seriousness of this behavior, and the need for it to end RIGHT NOW? Getting him to calm down was my first response, but nothing I could think of seemed adequate. Sure, I banned the game. Sure, I shut down the Wii, hid the DS, sent him to his room, brought him down for a talk. Andy was already apparently past the whole thing by the time Joey was calm enough to speak reasonably. But he could have been seriously hurt.

It's a growing problem. And as he grows, and we stare puberty in the face, I fear this isn't going to get better any time soon... unless I act now. And even then, it may not be enough.

A Boy and his Santa

Merry Christmas.

Merry Christmas!

Joey says that when he grows up, he wants to be Santa.

I bet he'll be the best Santa ever.

No, No, Stimey...

THIS is a Christmas Tree:



There is no Christmas Waxing like Christmas at my house. ;)

Being Social

Joey has himself two girlfriends. Who happen to be best friends. And both know Joey is sweet on both of them, and think it's fine. Ah, puppy love.

I got to see both young ladies this morning, as I took Joey's komodo dragon model in for him to paint at school. I knew the one young lady from last year, the other young lady is new. I was a little surprised to find I had permission to know our new friend's backstory. Then I heard it. I am not at liberty to share it, but let's just say my heart broke a little, watching that lovely young lady and understanding what challenges she faces. Joey adores her, and she is very serious about being "Joey's Buddy" and helping him with certain aspects of his day.



It was a reminder to us that there are going to be other challenges when you are in the world special education and special needs. So many of the kids in, say, Andy's class, may go through their entire school careers without having to discuss the needs of their friends, or that a friend is sick, or that a friend may go away. These events are rare outside the special needs community- so rare that children are often shocked and unprepared when their friends have needs, or get sick, or something happens to them. I am going to be working on strategies to help my guys deal with these things, because for us, it is a fact of life. Our friends have special needs, they need special kinds of attention and extra work to be able to play with them, our friends are often sick or get sick more easily and more intensely, and sometimes, things happen. We have not just one rare friend who hits the brick wall. Most of our friends face that wall every day of their lives. We have friends for whom every day they live is beating impossible odds. Every breath they take is a victory. Every moment with them is that much more precious. It isn't rare around here.

It was also a wonderful reminder of how far we've come. Joey is picking up on the rewards of being social, the skills needed to be social, and the joys of interaction with peers. He expresses his like for his two girlfriends- and I think we can call them both this, as in "sweethearts"- in a manner that is appropriate for his age. Other than being fascinated by their hair, he is completely appropriate. Holding hands now and then, spending time together, being buddies- all fine. And normal. And social.

You go, Joey!

Scatter

I haven't been writing. I have a plethora of little items I could smatter across the internet, but nothing that forms into a solid post. It's disconcerting. When one cannot get a grip on the little things, stringing them together as a necklace, the whole world becomes scattered.

Andy has started his OT. It is already making a difference for him at school, as he will now write more, especially after therapy. I have to pick him up from school, go to therapy, and then take him back, twice a week for the next three months. However, I am totally glad I didn't wait for school to move on it. Our eligibility meeting isn't even scheduled, and it could be the end of February before they get to us- which would, of course, be at the end of the three months. Having Andy struggle at school with no support for another three months would be devastating.

Driving down the road, having just paid up the co-pays and the gaps in insurance, remembering days when insurance wasn't helping with either child, I kept thinking of a Mastercard ad. OT, $100 an hour, twice a week. Speech therapy, $95 an hour, twice a week. ABA therapy, $90 an hour, four hours a week. Having your autistic child call you "mom" for the first time? Priceless. Having your ADHD and sensory dysfunctional child be able to sit in a chair and write a sentence? Priceless. I need to get Joey a new speech therapist, we've been without one far too long.

Joey is working on an animal report for school, which includes a written report and a model. I puled out my celluclay, but forgot how long it can take to dry. Joey is upset that he doesn't have his model to take with him today, but our very understanding teacher is going to allow us to turn it in on Monday. I just hope it dries enough to paint it over the weekend.

The Christmas decorations are slowly going up. If you want a sample of years past, you can check it out here. It is going slower than usual. We have Evan with us for the forseeable future as he searches for a job, so he can then get his own apartment. He's been a huge help with moving boxes about, but I'm not getting things done after the boys go to bed like I usually do, because he's downstairs and I would be in his space. I also don't want to annoy other folks with my constant playing of versions of A Christmas Carol while I work. I hope to get the glass garlands up today while the boys are in school, its hard to do those when the boys are running around the base of the ladder.

This morning, I am teaching some of the kindergarden classes how to sign Jingle Bells. I've been practicing all week. I'm a little nervous, but I don't think the kids will mind if I mess it up a little.

Time to be a pinball for the day...

Heading Back: A Thanksgiving Break

Breaks are always hard when you thrive on routine. That routine is shattered, and around here, there is little to take its place. We're not very organized. Each day is a surprise. You just never know.

We've had some bright moments. Joey helping make cranberry bread. That moment at the Thanksgiving table when it was time to say grace.

"Andy, do you want to say grace?"
"No."
Pause.
"OK. Joey, would you like to say grace?"
"YES!"
"Ok! Go ahead!"
"GRACE!"

There's been cuddles and games and stories and adventures. Grandma even got her Christmas tree WAY early this year, and we put the lights on it. Everything was all going great until today. See, tomorrow they go back to school. Joey's been fragile today. Lots of gabble about how many days are in a school year, and how girls don't like him, and he doesn't want to go back to school.

At bedtime, he was crying. He didn't want to go to school. School had too many days. His principal had doubled the days of the school year. The kids were laughing at him in class. He didn't want to go back to school.

We'd talk about it, and all the fun things at school, and how all his teachers are good and care about him. We think there may be some issues with students. We think there is an issue with the aide. We know the break is making him fragile. I think we may be seeing a myriad of little issues, coming together to overwhelm at once- no one thing to point to and say, "fix this, and it will all be OK." I remember being very annoyed as a child when fifty trillion little things built up, and adults ask. "What's wrong?" as if there was one thing i could give as a clear answer. And any answer I did give was always something that, individually, was trivial. Added to the pile of other trivial things, it wasn't anymore, to me.

My poor little guy, we've finally gotten him settled to sleep, but I bet it is going to be a hard night, and a harder morning. I just hope once he gets into school and gets his hugs, he'll know where he is and be comfortable again.

Getting Ready

Joey loves to cook. At least, he likes mixing things, and he likes that there is usually food at the end of the process. I've been using this for a variety of reinforcements. Having trouble understanding how to set up a science experiment? Bingo! Cookies. Need some extra hand strength? Bingo! Cookies. Need to work on following instructions? Bingo! Cookies.

Then i wonder why we all have a weight problem. Except Andy, who doesn't care for cookies.

This year, we've been moving it along a notch. I had Joey help me make whipped sweet potatoes last week. This week, we tackled cranberry bread. This is a real feat, because this isn't a throw-it-in-the-bowl recipe. You have to stop and cut in butter cold, requiring hand strength and stamina as you have to grind the cold butter and the sifted flour with your hands, and you have to do it quickly so the butter doesn't melt from touching it. If you know how to cut butter, you know it isn't hard, just tiring if you don't have good hands.

But Joey gave it a good go, and actually did a fabulous job:



The bread looks perfecto. We're having it tomorrow at dinner. I can hardly wait!

Driving to School

Andy has become a morning car rider.

It started when he complained of headaches- in the afternoon, getting off the bus. At first, I investigated possibilities of trouble on the bus. A child was poking him and teasing him, so we had his seat changed. Earplugs were offered, but that caused trouble, too. Questions were asked about comfort. Then we got reports of morning trouble at school. He would have issues, then would "clear up and have a fine afternoon." I was suspicious. Then he just flat-out asked if I could drive him. he wanted to be car rider, because of the headaches.

So in the morning, I have been taking him to school, so he can at least start the day quiet and headache-free. I really can't fetch him in the afternoon, because I can't sit in line, grab him, and be home in time to get Joey. Instead, I try to give him some time to calm before pressing homework upon him. Homework is a whole other can of sensory and being-7 worms, subject to new strategies as the old ones wear thin and wear out.

Tomorrow is out first of what will, should this one go well, be a series of meetings to get Andy's needs met so he can focus on his learning, rather than bouncing or dealing with headaches or having tired hands all the time. At least we'll be through Hoop 1 before the Turkey Holidays. But at the same time, anxiety gnaws. Will we be brushed aside yet again? How much of what we are seeing is ADHD, how much sensory problem, how much of it Andy needing attention and getting it in a way he sees as working? Does he need more attention? What supports does he need to learn to cope with ADHD and sensory issues? What surety will I have that those accommodations will be honored? What else is going on that I am missing? What will I do if we're told he needs nothing, doesn't qualify for service or accommodation?

Round 4

Ding.

I just turned in the paperwork to put Andy through the Child Find process again. The fourth time. Seriously, this is getting old.

I had him evaluated because his teacher was concerned that he refused to write at school, and he was getting headaches on the bus. What we got back was some very serious issues with motor integration, writing, and coordination. As in, yikers percentile. As in, if we had done something about this before, we wouldn't be here now.

Fourth time. I don't think they believe me.

Happy Birthday, Beau

Wishing you joy.

School Pictures

Yep, tis the season. First I got home this nice set:



Pretty good, for a school picture.

Then in yesterday's pack was this:



Check out the jutting bottom teeth. Great. I looked down to find you send in a card if you don't like a picture, on retake day. And retake day is....

Today.

Seriously? Un. Happy.

Another place to peek

I put up some more yummies at Cooking For the Kids. I should cook more.

Halloween at our house

While I prepare for the next holiday season, here are some shots of the one just passed.

October Blooms

Take a peek in my garden gate.