Saturday, April 05, 2008

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?

Thursday, April 03, 2008

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.

Wednesday, April 02, 2008

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.)

Tuesday, April 01, 2008

Happy Autism Awareness Month!

Monday, March 31, 2008

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.