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Sunshine and Roses

Posted Nov 29 2008 12:22pm

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 s creaming 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.
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