Posts from — May 2008

“I love you just as you are. I accept you as a blessing from God. I join with you today to be the partner of all my days, to be the mother of our children, to be the companion of my house; we shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love.

When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face.

This is my solemn vow.”

These are the vows I made to my wife almost six years ago.

In the midst of all the strains of all the effort all of us put forth for our children, reminding yourself of the vows you made to your spouse can help you reclaim some perspective - on this day in particular for me. We can give so much to our children and all the day-to-day administrivia of our lives that everything turns into effort. It’s easy to lose track of joy.

When you’re ear-deep in evaluations, preschool planning, therapies, preschools, research, reading, phone calls and e-mails, work, home therapies and activities, and God-knows-what-else, and then you lack enough sleep and energy to make sense of even half of it, it’s easy to assume marriage will just work itself out along the way.

This is not a healthy assumption. There’s a reason why the divorce rate for people with special needs children are so high. It’s very hard, very consuming work, and it’s easy to lose track of your relationship in the middle of it. This is one of the essential parts of Mother’s Day they tend to forget on the cards.

Today, I give eternal thanks that I was able to marry my best friend in all the world to be the mother of our perfect little boy, and that together we have been given all the gifts and joys he brings to our life together.

I give even more thanks for the joy she brought to my life before he was born, and how that joy has multiplied each day since.

When I see her hold him, I get goose-bumps - every time. I see him kiss her and I know everything is right with the world.

I would also be remiss if I did not celebrate the fact that 2 1/2 years ago, this Wonder Woman gave birth ‘the old-fashioned way’ to a 9 lb 4 oz, 21 1/2″ long, 99.99th percentile head-sized boy. After he was out, she did everything but jump on the table and flex her biceps. I’m still in awe.

Today I commit to work harder to not be an ass so much of the time.

Today I vow to do a better job remembering that we are literally three-in-one, that you are the partner of all my days, the mother of our children, the companion of my house. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today and every day above any obstacle that we may face.

This is my solemn vow.

[Ed. note - This boy loves his keyboard!]

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Today I went to the doctor because I’m still tired, and not really able to concentrate, and have no stamina, and have NO initiative to either start anything or finish whatever I feebly started.

She told me to eat right, exercise, get more sleep, and take time for myself. I wanted to cry right there in the office. I asked if there couldn’t be a drug for me - she said that drugs were a short-term solution, and that I needed to look at the long-term and take better care of myself physically, or I simply wasn’t going to get better. I told her what my day consists of, and how there isn’t time for me to do all those things. She said I would have to make time. Uh huh. She suggested I hire someone to do the stuff that takes up my time, because “since you don’t do anything except work, you must have all this money sitting around.” No really, she said that.

So J-man, instead of working with you in the evenings, and instead of cooking, or doing laundry, or whatever, I’m just going to take that time for myself. Instead of paying for (I don’t know) our mortgage, and car payment, and Tim’s student loans, and therapy bills, and utilities, and groceries, I’m just going to hire someone to be my personal servant.

With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

I cut J-Man’s hair yesterday. Go back and re-read that first sentence again so you can understand the enormity of that statement. I’ll wait.

[To really get the full magnitude of this, see previous hair installments here and here.]

I cut J-Man’s hair yesterday, and it looks decent. I cut J-Man’s hair yesterday, with clippers. I cut J-Man’s hair yesterday, and he didn’t completely flip out, although he wasn’t the HAPPIEST kid in the world. I cut J-Man’s hair yesterday, and although he cried a little bit, he didn’t scream, or scratch me, or try his best to get out of the chair. I cut J-Man’s hair yesterday, and I did a little touch-up this morning, and he was great about it. I cut J-Man’s hair yesterday, and ended up with a ball of hair bigger than my FIST, that the birds are now enjoying using in their nest building since I dumped it off the deck.

I cut J-Man’s hair yesterday.

I am MAMA, hear me roar!

I saw this quote on The Joy of Autism today. It’s from Audre Lorde.

“When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.”

I doubt she had parents of autistic children in mind at the time, but if she had the strength of conviction and determination to say these words given everything she faced, I have no excuses to make for myself.

When you’re the parent of an autistic child and your strength, determination, and conviction about doing however much work it takes to help your child realize their full potential starts taking over inside of you, you realize that this precious child in front of you is your vision.

Before her death, Audre Lorde took the name Gambda Adisa, meaning Warrior: She Who Makes Her Meaning Known.

If that doesn’t give you goosebumps when you think about your child, go back and read it again until it does.

We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!