Friday, May 16, 2008

Yes indeed

funny pictures
moar funny pictures


Step has come for a visit. Andy is snuggled on the couch, with his ice cream and juice and strawberries, watching some MSB and a bit of LB. I have a stack of games nearby, including his current favorites, Franklin and the Green Knight Game and Hi Ho Cherry-O.

If you ask him how he is, he sighs and says, "I'm sick."

Perhaps I'll get something cleaned this morning.

Or at least one boy good and squished.

Thursday, May 15, 2008

IEP success

Well, no one got strangled, the goals look pretty good, can't ask for much smoother than that.

Hey, we got to have some success around here, right?

Wordless Wednesday: A First

Wednesday, May 14, 2008

IEP in the AM

We have our IEP tomorrow morning. The teacher has blocked out an hour for it. Ha. ha.

I did get the goals the teacher is going to propose. They look OK. Lots of social skills, expressive language, and attending, with some practical survival skills (such as knowing his address and what to do in an emergency) tossed in. Eleven goals. Hallelujah.

Just have to get through without thinking black thoughts about the school OT. If I can do that, this should be smooth as glass, complete with ESY.

Pray hard.

Continuing Discussion: Modern Fatigue

Abfh has responded to my earlier post about exhaustion, which was a response to another post of hers. Interested in the continuing discussion? Do check it out.

As usual, I don't absolutely agree with everything abfh says, but I think the points are excellent to ponder, and generally good basis for thinking about modern living with special needs. I don't think abfh discounts the realities of raising disabled kids- she does something far more constructive. She offers new ways to think about how we are thinking about our kids and about our neighbors.

I will probably be writing more on this, as I process new ideas and connect them with my own family and experience. Never fear.

Stress is a funny thing

One thing about being a special needs parent is the constant attention it requires. I mentioned last time about not being able to just put the kids outside and fix dinner; in fact, not only an you not do that, but if you put the child outside, often you have to be out there engaging them. Children like Joey have few tools for entertaining himself. He cannot just think up something to do. Activities must be structured and organized for him to be able to participate. What will he do if I don't pay constant attention? Well, I found him in the middle of the street once. Screaming is popular. Tracking is a great favorite. That may be all fine and dandy, except that he gets frustrated with not being able to engage himself. Boredom is a terrible thing.

Another thing is the decided lack of sleep. I am not alone; most of the special needs parents I know suffer from the lack of sleep. I can't tell you the last time I slept four hours straight through. Children need covers adjusted. They need to crawl into bed with you. For other families, there are seizures to worry about, real sleep issues to deal with, medical procedures and medications to administer and all sorts of fun things in the night.

I've been seeing a lot of the doctor recently. Before Christmas, I had an episode of severe costochondritis, and it has persisted ever since. My asthma has returned with a vengeance. I have a bug bite that won't go away. I tried to lose some weight, and ended up gaining some instead (and I cannot afford to gain a single ounce!). Now I apparently have picked up PVCs. Think I have a little stress in my life?

So I now have some little pills. I am not fond of pills. No offense to other folks who take pills and find them a good thing, but I just feel like I've failed my little guys. I dropped the paper off at the pharmacy, I pick them up tonight. With all likelihood, I will stare at the bottle for a few days while my mom quizzes me twice a day about whether I've started them yet, I actually have an excuse to delay, because she also put me on allergy meds, and I have to make sure those won't have side effects before I can start the pills. Nothing I have done is enough. I have pills to get through my day.


Monday, May 12, 2008

Special Needs Parents: Where is my bed?

I've been mulling a post from abfh, which is something I do a lot, because she has lots of interesting things to say and insights to share. This one, in case you didn't click on the link, is about autism parents. The study is about how parents of autistic kids have a higher rate of neurological conditions than other parents- including depression. The good news was that only 1.8% of the mothers of autistic kids were diagnosed with depression. As she so correctly put it: "Contrary to the widespread stereotype of the suicidal, emotionally devastated autism parent, these families with autistic children were enjoying their lives just like other families. The fathers were no more likely to be depressed than any other fathers, and more than 98% of the mothers did not suffer from depression."

Why have I been mulling this? Because I have a problem. Something is wrong here.

A great many of the parents I know- particularly the mothers- have special needs children. Not just autistic children, either: Down Syndrome, hydrocephalus, cerebral palsy, ADHD, ODD, and a peppering of other disabilities, defined or specialized or what have you. Perhaps the vast majority of us are not diagnosed with depression. I suppose that would be correct.

But we are all, to a [wo]man, very, very, tired.

Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep depravation are followed eventually by a nap or a day at the spa.

What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out an play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught. The process of choosing clothes alone is actually a multistep process involving visual discrimination, sensory processing, motor planning, dexterity and coordination... and several other skills most people take for granted. All of these things have to be broken down and taught to many of our kids. And I'm not talking preschoolers here. I know several families directly with teenagers dealing with these issues- and know of several more families in the system. We have no time to be tired. Our babies are counting on us not to be tired.

Exhaustion and stress are funny things. They are not depression, though they can lead to depression. You can be depressed without being diagnosed as such. I had a therapist I was seeing for "mood disorders" before I had Joey who, upon hearing his diagnosis, suggested changing my own diagnosis to depression (I stopped seeing that therapist). Having thoughts of suicide and driving off a bridge with your child would, I think, be seriously in the running for "depression." However, it's not the only outcome, and if I was having such thoughts, I would certainly be running- not walking- to the nearest psychiatric office for help.

Exhaustion leads to other problems. Sleep issues. Eating issues. Mood issues. Things that just get brushed aside as stress, as exhaustion, as "oh, you're a mom, that's the way it is! Hahaha!" Things that get laughed off as "put down the cheeseburger, lady, and go for a walk!" Things that get ignored as "boy, you should take a nap/go on vacation/hire a respite worker for a bit" as if you had time/money to do these things. As if an hour once a month did anything for the kind of exhaustion I am talking about. Or even once a week.

And it isn't just 1.8% of the special needs families I see with this exhaustion thing. It is 100%. I suppose there could be whole cities somewhere elsewhere with special needs families who are not exhausted. I'd like to meet some. I bet they'd have a lot of ideas to share with this little town- and we'd be all for them.


We're being barraged here by rain. It's nice to have some, since we've had drought for the last several years running, and no real hurricanes up the coast to bring water. The run-off is far worse than before- al the new asphalt and house seed- but hopefully some of it will get to the aquafers. One can hope.

So a week after an exciting beach weekend, the boys spend Mom's Day Weekend stuck in the house. It's been chilly rain, so going out in it is a definite no. Besides, there are echoes of coughs haunting the night here. Just what we'd need is full-blown spring colds.

We are also entering IEP season here. Well, when it rains, it pours, right? I ran into school to have a quick "pre-IEP meeting" with Joey's teacher, so that she's be aware of things we are concerned about. I think she's learned quick that I do not like surprises at IEP meetings. It was an interesting chat, partly because we were trying to figure out what the school OT could possibly do given her limited skills set, and partly because I got another glimpse of the kinds of things he does at school that he doesn't do for me. Like get his shoes and socks on. Make choices. Voice favorites.

I am looking forward to Joey spending more time in an inclusion room, even for just the more focused activities like reading groups and math circles. We're going to start him in there with the reading group, and then add the math around Christmas. I think we're looking for lots of expressive speech goals, attending goals, social skills, and sensory self-regulation. Things to make him successful in school, and in getting on in the world.

In the meantime, a house has come available down the street that has a basement apartment and a mother-in-law house. Its a bit out of range for us right now, but I thought I might take a peek anyway. Just in case. One must think of possible futures, and with Joey's severe communication issues, we may need the space for him in the long term.