When Mom Forgets

I took the boys on a drive, out to Wakefield, one of our regular haunts. After being assured that there were no turkeys loose today, we were handed these new little booklets for kids to fill out, and they can earn a badge. Very nice little books, too. The first few pages are geared to the 5-8 crowd. Joey just turned 6, and loves to read. Fabulous.

So we wandered out, sauntering in our usual way, then we got up to the house site where the benches are, and I called Joey over to look at the new book.

Did I mention that sometimes I forget that Joey is disabled?

To me, Joey is just... Joey. And he's a smart kid on top of it. Reads like a dream. Interested in the world, in his way. He likes living things and taking walks and that kind of thing. And he's a cutie-pie, with very kissable cheeks and a big grin. That's my boy.

But there are some things Joey simply cannot do. One is to wander out to a place he doesn't see very often, stop at a point where he doesn't usually stop, and focus joint attention upon a book. On top of that, he was being asked questions about the book, which was giving him new information, and being asked to write the answers down.

Oh dear. No no no. This will not do. That child would have rather pulled out his own fingernails than sit with me and look at that book, or read a word from the page, and let me know in no uncertain terms.

Good side: he's communicating. And he remembered that George Washington was president.
Bad side: Well, after the meltdown over stopping at the benches, and the second meltdown over the book, we had a meltdown at the car because the sheep weren't out.

But basically, it was because Mom is an idiot.

First glimpses

I got Joey a camera for his birthday. Here are a few of our first glimpses into Joey's world:






He took 54 pictures today. Stay tuned!

Happy Birthday Joey!

When I was one,
I just begun.



When I was two,
I was nearly new.



When I was three,
I was hardly me.



When I was four,
I was not much more.



When I was five,
I was just alive.



But now I'm six,
I'm as clever as clever.



So I think I will be six now,
forever and ever!

-A.A.Milne

Nothin' says lovin'

Like baking 50 cupcakes in the dead of night for a boy's birthday in the morning.

Actually, blueberry muffins, which will then be frosted with vanilla frosting dyed blue, then set with blue sprinkles.

Happy Birthday, Joey. I love you.

Sick day

The boys are home. Joey was complaining of tummy trouble yesterday, so I went and got him from school. That came with a nasty fever that broke early this morning. Now I just have two sniffle-heads. OK, we really have all four of us sniffling, but I'm the mom, and poor Allan had to go to work. :P

So I have two sniffleheads. They feel OK enough to want to play, but they get tired out easy and that makes them grumpy. So instead of getting them up and down the stairs, I have left them in their pajamas, and brought breakfast upstairs.

Now, I am not a gadget woman, nor a big TV viewer. My husband, however, is all over it. When he got his nice, big bonus this year (because he is an awesome worker and got awesome reviews), we got ourselves our anniversary present: an Apple TV. I was unsure how this gadget would be any better than the other gadgets we have, but it made him happy, and that was the important thing. But now, I would just like to say, thank you, JoeyAndyDad, for our AppleTV. We have spent a deliciously restful morning in the bedroom, tucked into Mommy and Daddy's bed, watching Oobi on the fancy TV. The boys are getting much-needed rest, we've only had one whining spell, and everybody is happy. We are sipping our juice boxes, no one has waxed, and we have smiling faces, despite still having fevers and sniffles.

Now I just need to find a couple pairs of google-eyes for two boys who want to play Oobi...

Discipline and Getting Older

Andy is a little under the weather. You'd never guess this from watching him rollick on the floor with his brother just now, causing Joey to erupt in cackles and giggles. But two hours ago, Andy was zonked out on the couch.

So there is my three year old, curled up on the sofa with Blankie and Mr. Guinea Pig when Joey decides the funny thing to do is to imitate the dryer sound (a loud, long buzz) at top volume. As intended, this noise woke Andy. But then he started to scream and cry- the poor kid couldn't believe anyone would mess with him when he was feeling so bad.

So, amidst the wails, Joey laughs. I order him to his room for a timeout- both to punish him and more importantly, restore some quiet to the room. I get "No, I don't think so."

This was not Joey's first trip to his room this afternoon. On our first trip, we talked about apologizing and what it meant. I modeled that when you apologize you mean that you're sorry, that you wish you hadn't done or said whatever you'd done or said, and that you'll try not to do it again.

So we went up for the second time and Joey was already scripting the usual "I'm sorry". Why? "Because Daddy's mad." Right. The previous lesson clearly had not sunk in. The time out rules this time were pretty strict- stay in your room, no toys, and most importantly, be quiet.

He was never really going to follow the third instruction, but I did want him to stop screeching at the top of his lungs, since we were right above where Andy was attempting to sleep. I went downstairs, and after about fifteen minutes of sniffling and wailing from above, returned to see what he'd learned.

After he calmed down, Joey said, "I'm sorry for Andy. I won't make dryer noise anymore." Wow. We walked through what happened again, focusing first on how Joey's noise made Andy feel, and then about how Joey was upset because he got punished and also that Andy was sad.

Andy's still at the age where he thinks simply saying he's sorry makes it all better. It seems like Joey is outgrowing that stage, and part of it is that he understands others' feelings more completely.

Bake Sale

Several of my friends, both live and online, have been having issues with getting much-needed equipment to help their kids. Communication devices seem to be particularly difficult to lay hands on. Just as people tend to assume that kids who cannot speak (or worse, cannot speak properly) are stupid, they assume all communication devices are alike, and just grab whatever and go. Can't you just pick a button and push it?

It is enough to tear one's hair out.

It's worse when the person showing this ignorance is your insurance company liaison. Why? Because they will block the money you need to get the right device your kid needs, and get it ASAP so the poor child can start proving they aren't an idiot communicating.

I have placed the suggestion several places that we should have a bake sale and buy these things ourselves. We know where to get them. we know how much they are. We're just broke. Don't know how that happened, with school and therapy and other equipment and whatnot. I fear some folks thought I was/am being facetious.

I am not.

We should get together and have a big, world-wide bake sale. We should advertise it. We should all news outlets and tell them what we are doing and why we are doing it. And we should then publish a big cookbook to continue the project and keep some cash rolling in.

This government thinks little of funding wars, bailing out companies, "fixing" messes others have made with money, but heaven forbid we be trying to make our kids independent, support our kids in their needs and goals. Many of these friends would love to even have a clue what those self-goals are, but the kid can't communicate- because they need the %^#@ device the insurance person says is "not necessary" or not from the vendor they like.

Having me sit here and cuss isn't getting those devices to those people. A bake sale might.

Who's in?

Ah, Awareness Month FAQ

Whenever there's a bit of a news blitz about autism, we get snowed in with the question, "What causes autism?" Desperate parents with new diagnoses. Family members who are curious. Friends who haven't moved beyond that. Other parents who like to toss around old questions. They all want to know: what caused Joey's autism? (Sometimes I think they are really asking, "Did you cause Joey's autism?", but perhaps that is for another blog post...)

We have no idea why Joey is autistic.

Vaccines did not cause Joey's autism. He was autistic before he was ever vaccinated. He was autistic from birth. None of his vaccinations contained thimerasol (did I really have to just type that again?) He did not show any adverse reaction to the MMR vaccine.

We have no family history of autism or anything that would now be diagnosed as autism or asperger's syndrome, so far as we know or understand. We do have family history of what is now called sensory integration dysfunction.

We did not have a "normal pregnancy." I went gestational diabetic with both pregnancies. I only had insulin with Andy, not Joey. Joey did briefly go into "distress" and was born by emergency c-section. Both babies has jaundice (Andy's was far worse than Joey's). I also lost 40 pounds over the course of each pregnancy (never fear, I found them all again).

Joey's head grew normally.

Joey does not have any signs, nor has tested positive for, PST deficiency.

Joey has testing negative for any heavy metal poisoning.

Joey has tested negative for food allergies and respiratory allergies. He does have some kind of contact allergy, most probably to floor or carpet cleaner and related products.

Joey was not sick a day until he was two years old. He then had a mild stomach bug, for which no medicine was required. He did not have so much as sniffle before then. The only medication he received before he went to school- including aspirin, ibuprophen, tylenol, antibiotics, cold meds, etc.- were any drops placed in his eyes at the hospital, numbing gel for his teething, and neosporin for minor cuts. He was autistic before receiving any of these medications. He did not have ear infections until he started school. We did have two days of a yeast issue in breastfeeding, but no yeast infections on his part (just on my part).

Joey shows no sign of seizures.

I have never smoked, nor does anyone living in my home. I did not drink during my pregnancies.


So I have no idea why my son is autistic. He is. I'm sure there are plenty of other theories popping around. Ultimately, God made him this way. God made me to help him learn to cope, survive, thrive, flourish, and enjoy life. Then He made Andy. He did not make Andy autistic. He made me to help Andy learn to cope, survive, thrive, flourish, and enjoy life. And we are having the time of our lives.

Sunshine and Roses

I've been getting a lot of emails and calls lately to the effect of "I'm reading your blog, and you have got it so good!!! Everything is going so perfect for you! Your boys are so smiley all the time, I am so jealous! No tantrums, no problems, everything there is just sunshine and roses! So get off your butt and go do some work or something! Quit complaining like a brat when I call/email/see you!"

So, for those avid readers who have noticed that my blog emphasizes the good times and achievements of my wonderful, beautiful, smiling boys, I would just like to say: you are absolutely correct. We have come a long way, and we continue to make strides. I am very proud of the work both of my little guys do- they are two of hardest working little guys I have ever known. We have gone from a non-verbal child to a child who can have a basic conversation about his day and his life and his needs and wants. Just in this blog alone, we have gone from utter shock at a sentence to cheering on a whole presentation complete with question-and-answer session. We have gone from screaming frustration all day long to the whine and occasional meltdown. Joey is growing up, learning to regulate himself, learning to communicate. The frustration is ebbing. On the other front, we have gone from "normal" to sensory dysfunctional, and are now well on our way back to fully functioning in regular environments. We are through a food strike, back into normal "picky eating." We have stood at the brink of a real problem with speech and behavior, and found a path away (called "therapy and school"). Andy is also growing up, and the energy is getting some real guidance.

So is my life all sunshine and roses? Well, in some ways, yes it is. Two beautiful boys, lots of hugs and kisses, sunshine in the back yard and food in the fridge actually being consumed.

And in some ways, it's not. We still have our finger-biting and smack-on-the-chin problem, for example... and Andy imitating it. And the latest crazes in my house? Loud choruses of "Weave me AWONE!" racing through the house, especially if I have just asked a child to perform a non-preferred task or stop a dangerous activity. The word "No" bounces around here a lot, too. Sound like normal pressing of limits? Come around sometime. You're not getting the full effect. Joey tends to flail more than he used to, incorporating the behavior of some of his classmates. Trying t share new experiences with Joey is always a challenge- to pull his interest to something new, to focus on something new, to explain it when he has neither the ability to focus, nor the language control to make what you are saying relevant to him, can be very frustrating. Getting that joint attention, crucial to being able to teach and learn, is a real challenge- and all the more so because you forget he has trouble with it. He's not off in his own little world, he has pretty good eye contact (not great... but passable and reasonable), he certainly expresses interest in videos and in things around him, just never in a way you expect. For example, he likes tractors and animals, so we took him to the Oxon Hill farm. In the museum part is a display about butter. Talking to Andy about how milk comes from a cow and is churned to make butter- in most elementary terms- no problem. Wow, milk comes from a cow, now let's go look at a cow. Connections made. But Joey? He can't focus on the churn, the words you are throwing at him seem to be a jumble. He caught the sign for "milk" and "cow" but then wandered off, too uncomfortable in the unfamiliar setting to pull himself away from tracking the floor tiles. The cow was mildly interesting, as it was alive and moved. But somehow I failed to teach him the lesson I intended, connecting cows and milk, to start building understanding of food, consequences, sequences, cycles, etc. This is very frustrating. Remember, I'm a teacher by trade.

Besides, I want so much to share the world with him. Living is so wonderful! It is so full of everything! I don't so much mind following his lead, as I get frustrated trying to constantly figure out what that is, and being unable to provide proper guidance for my child, when part of the job of a parent is to guide, to introduce, to share. I am sure this feeling turns to fear, anger, and despair in others I see trying to raise autistic children. What shall I do with it? It's not a sunshine and roses question, though the resulting answer could very well be, and usually is.

And on our other front? Well, he's almost four, and just now emerging from the Terrible Threes. We've had them pretty easy, because Andy's a sweet kid by nature, and had Joey to guide him. He still wakes up grumpy, he still prefers to stand to eat (or just jump around instead of eating at all), still gets into bickering and fighting with his brother, still is testing his limits and boundaries. That's no sunshine or roses either... in some ways.

Yes, there are still challenges, both theirs and mine. Life isn't always sunshine and roses, but it sure feels good and warm on my back and the garden is full of perfume. I like to sit out on my new chaise sometimes and breathe it in.

Wordless Wednesday: Home to the Farm

(This is "home" because my family is from Oxon Hill. My great-grandfather actually worked the Oxon Hill farm before returning to Falls Church. I still have family nearby.)

Happy Autism Awareness Month!

Sick again

Sorry, folks, I am once again down with tummy bug. Trying not to wax. Will keep you updated. Unless I wax.

Back to school

Spring break is over. I had to put my boy back on the bus this morning. then I had to take the other one over to his school. Now I sit at mom's office, poised to begin my career as "webmaster"... with no boys playing in the background.

Sigh.

Surprise date

So Mom walks in about four o'clock and announces that we are going out to dinner. "We" being me and my husband. By ourselves. Just because... well, Grandma feels like watching the bairns. God Bless Grandma.

After few minutes of settling boys (quite the feat- this is the end of Spring Break, and Joey is definitely ready to go back to school), we raced out the door and into the car. We toyed for a minute with the idea of going to France. Or back to India for a spell. Las Vegas would do. But we decided to just go on to dinner instead.

We had three Indian places in town for a moment, and it was lovely. But the one I liked closed down, the second one the food was terrible so it closed, and now we are left with only one. We decided to chance it. Ah, mango lassi and lamb korma... yum yum yum. It turned out great. We ate, we chatted about possibilities for the future, we came home.

It lasted an hour and a half.

We need to learn to take our time. Maybe drink more. Breathe.

Knock-knock: Joey style

"Knock-knock."
"Who's there?"
"Blue."
"Blue who?"
"We are crying."

"Knock-knock."
"Who's there?"
"Yellow."
"Yellow who?"
"Knock-knock."
"Who's there?"
"Yellow."
"Yellow who?"
"Yellow is not orange."

"Knock-knock."
"Who's there?"
"Red."
"Red who?"
"The cherries are red."

"Knock-knock."
"Who's there?"
"Red."
"Red who?"
"Knock-knock."
"Who's there?"
"Blue."
"Blue who?"
"Blue is the crying."

Hey, he's trying... and at least he's understanding its supposed to be funny.

Knock-Knock jokes are one of those things most parents take for granted, and just "suffer" through the early years when kids are playing with language. Here, it's speech therapy.

We are very, very proud of him.

Wordless Wednesday: Williamsburg

An excellent morning

Although Spring Break started on Friday, today was the first day Joey realized he was on holiday, and not just one of those funny Friday-off weekends school sometimes has. He's going to be home all week. I had to think fast. How to help him get through an entire week with no schedule? One day at a time...

Today's solution was the pool at the gym. Our gym has a lovely children's pool, and its rarely used, especially in the morning. I can see both boys at once, and no one can get in over his head.

Usually, this venture is an adventure. Go to gym, get two small boys into dressing area before clothing removal commences. Get two small boys into swimsuits. Get mom into swimsuit. Gather clothing from all over the room, including the sink and toilet. Get towels at top of bag. Get children to swimming pool. They usually keep their suits on OK. Breathe while they play. When it is tim e to go, transition appropriately to avoid meltdowns. Begin at least 15 minutes before you really need them out of the pool. Herd small children back to changing area before removal of bathing suits commences. Get wet bathing suits off of small, wet bodies. Get own bathing suit off. Chase down small, naked children who have escaped back to pool area. Hope you have suit still on, or towel handy when this happens. Hence, I always get dressed first to minimize opportunities for escape while mommy is still naked. Get two small, wet bodies back into normal clothing, without anyone slipping and hitting head on wall or floor, or water from sink flooding same floor. Gather up towels and suits from all over changing room, including sink and toilet. Herd small children back to car with various offers of positive reinforcement.

I have noted this exercise and its delights before, much to my pain and a mountain of unfortunate email comments (to the point I had to remove one of the posts). However, I have considered the work worth it, because both my boys LOVE the water SO MUCH. Ecstasy is the emotion when I announce to these two, whilst they bounce upon my bed this morning, that we are going swimming today. Pure bliss.

Today, I was rewarded for my generosity. Two boys entered the gym, and headed to the changing area without losing any clothing on the way. They patiently got into their swimsuits, and gathered their own clothes and put them in the bag. THEMSELVES.

Then they walked patiently out to the pool, and commenced immediate fun.

And it got better.

Time to go? No problemo. Five minute warning, ONe minute warning. One countdown and one count up, and they were out. Very impressive. All the way to the changing room, no lost clothing. I spread a towel on the floor, and they patiently sat criss-cross-applesauce waiting for their turn to get out of wet clothes and into dry ones. They sang the ABC song (over and over) while they waited. They helped put their wet suits into a plastic bag, then marched out to the car with proclamations that it was time to go find Grandma (which was perfectly true).

Who are these children, and where have they put mine?

Heaven in a box

My mom sent me a special present for Easter: Shari's Berries.

If you can have fruit and chocolate, get some. Follow the instructions on the box. Trust me.

Funny Bunnies

Happy Easter!!!

The Tough Questions

Do you have certain topical conversations you know are someday coming... ones that you think hard about what you will say when it comes time to discuss them. Yes, you know the ones. And you hardly ever say any of the things you think are necessary, or planned to say.

You may remember that in September, my mother lost her cat. The boys were fond of the cat, despite her rather grumpy disposition. Today, Joey bounced into the room where mom and I were discussing Easter baskets, and asked, "Where is the cat?"

I recovered fairly quickly- we are getting used to Joey asking questions- and this one even had a referent. Mom wasn't so quick. "What cat?" she asked- remember, the cat has been gone some months, and the children are often at her house, and this is the first time he has asked since we explained that the cat was gone.

"The orange cat," he replied as if he had been answering questions all his life. Amazing. But... what to say?

"Remember when the kitty was sick, and we took her to the doctor?" I tried to explain gently. "Remember, the doctor couldn't help her?" He looked right at me for a moment, then away, his fingers playing with something else. Most folks might take this as disinterest, or that the conversation was over, or that he had moved on- but he hadn't. He's Joey. He's thinking. What to say? What to say? As Maddy would say, I dithered.

"She died, honey," I finished simply, with no other words to provide; there was nothing more to be said.I gave him a little hug. "Do you miss the kitty?" I asked. "Yes," he replied, trying to escape me. "We do, too," I assured him with another little squeeze. "We;re sad she's gone." Then Joey was gone, too, out the door and down the hall.

That was not how that was supposed to go.