A note to parents about your children and school.

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this idea is something i really have a hard time with. i have heard so many times "he'll eat it if hes hungry enough". well no, my son wont. he too will skip meals multiple times a day, and he is more willing to eat when hes really hungry. the amount changes at that point, but the actual accepted food does not. in the long run, i'd rather he eats semi-decent food that provides most of his nutrition and enough calories, than for him to eat completely healthy food and not get enough calories. even the healthiest, most nutritious food that provides everything he needs on a daily basis will do absolutely no good if he wont actually eat it.

of course, i have one of those kids who arbitrarily decides that he doesnt eat things anymore. even spaghetti is no longer accepted, after 3 years as a favorite food. unacceptable foods are not even allowed on his plate or he wont eat anything at all.

and yes its stressful, just as bad for them as for us parents. its a battle we decided not to fight. there are days where all he eats for dinner is canned peaches, and other days where he downs two cheeseburgers. we supplement with "chocolate milk", aka carnation instant breakfast on those iffy days, and keep a handy supply of the two fresh fruits and other healthy snacks he will eat. we go through several bottles a week of V8 fusion, or the great value brand lookalike.

its what i call not sweating the small stuff. i'd rather spend my time making sure he gets the OT and other services he absolutely needs, than getting him to eat broccoli (which i never ate until i was an adult ).

Good stuff, Chronos . Telling a parent to stop stressing is like telling them to stop breathing, but it's something I'm always working on. I liked the bit at the end about community college. It really is a great option - way cheaper and it's easy to transfer later, if desired.

I very, very, VERY strongly disagree with this contention. Autistic kids don't have a problem 'handling' school any more than the school has a problem 'handling' them. The system has not kept up with inclusion. Processes, assumptions, and teachers' own education does not reflect the diversity of needs in the classroom. No amount of extra sleep, or servings of vegetables will fix that.

100% of the parents of autistic kids I know, do all 3 of these things better than the parents of most NTs. My son sleeps 10 hours a night, eats a healthy diet, and gets exercise every day. None of these have any impact on the school system's ability to adapt to his needs.

I would contend the system needs to eat a better diet, get more sleep, and run around the block a few times. We'll see if that makes it more flexible.

I love that one part of my message about how parents of kids with autism should not stress themselves out is being used by parents of kids with autism to stress themselves out. That's the kind of craziness you people need to avoid.

If this kind of crazy saves my son from a life of perpetual self-hatred and poor education, then I wear the 'crazy' label you've slapped on me with pride Vector.

Caitlin, the "crazy" part is fixating on that while ignoring the main thrust of what I had to say:

I agree with you, actually, that most parents of kids on the spectrum work harder on the basic needs thing than most parents of kids off the spectrum do. And I actually think grazing works much better for most spectrum kids, and originally wrote something much more complex there. I will come up with a better way of saying what I wanted then "three healthy meals a day." "Getting nutritional needs met" would have been better.

But not getting enough sleep is an issue for most of the kids I work with. I know from living them to this day how taxing the sleep issues of someone on the spectrum can be. I don't think I made light of the difficulties of working with them in any way. I know that getting little aspies enough sleep that they aren't perpetually cranky and half-shutdown is devilishly hard. It's one of the reasons I recommended a late start.

And the fact that people are still insanely researching digestive issues as a CAUSE for autism tells me that many kids on the spectrum are having such severe problems with food sensitivity that they aren't getting a diet that keeps their body working well, despite the best efforts of their parents.

My point was that taking care of those basic issues is so very challenging for many kids that parents would do better to really focus on them rather than spreading themselves thin trying to do everything. You can't do everything, and some things are going to get let go. I see parents and children every week who make the choice that getting enough sleep and eating healthy enough food to function well are battles that just aren't worth fighting. Parents encourage their Aspie kids to stay up until 2:00 in the morning studying. That's counter-productive, at best. If I didn't see it all the time, I wouldn't mention it.

And if your son does not have significant issues with sleep and nutrition, that's great. Good for you, and good for him.

I still think you should go to the movies sometimes.

Square peg, round hole, round peg, square hole......it seems that with this child, the shape of his peg and hole change. The issue we have is being able to accuratly figure out what kind of peg he is and to find a map of the holes to find the one that fits him.

This is complocated by the fact that he looks like a round peg and people automatically try to squish him into those danged round holes.

When I adapt our family hole (home!), things get easier. I still resist though, because I would prefer some of the stuff that is in a traditional round hole. For instance, getting DS to bed; no problem if we follow the "routine". That routine consists of....My laying in bed with him (his if dad is home, mine if dad is away as dad travels) I must rub and tickle his back with either food network or HGTV on the tv. I must tickle all of his favorite spots (which change). Then I must cuddle him until he falls asleep. What I find interesting is that the routine is a must....even if he agrees to another routine. If we decide that we want to watch a different show, he is agreeable but he won't sleep. I want to be able to say bedtime, and have him go to his room to sleep. Not gonna happen.

Food.... In my NT world with my NT son it is totally reaonable to say....don't fight about food, when he's hungry enough, he'll eat from whats offered. Try that with my aspie? Um, unsuccessful. I remember trying that when he was really little, before it could have been habit or behavioral. If Aspie DS wants a certain food and I say no, he will not eat until he feels so terrible he's melting down. At that point I'm begging him to eat anything. I had to get over my NT expectations about these rules long ago, actually before we had a dx. I knew my child was different and we just figured it out. Now we know why and that is a little comforting. It is a bummer though that because of the meds, he's overweight and only wants to eat crap. Because he's overweight he doesn't want to exercise...blah blah blah.

Anyway -I get what the jist of the thread is. At least for me, the stressful part is trying to find a place where whatever shape my son's peg is, he can be accepted and happy. He wants friends and the NT world isn't always so friendly. I wish he was like some aspies who didn't really care about social connection - it would be SO much easier. Not my baby, he wants desperately to be liked,

Please send send people who think that your autistic child will eat when he is hungry enough a link to this article:

Four-Year-Old Boy Has Never Eaten

It's about an autistic boy who had acid reflux in his infancy and has been unable to eat since. Letting a kid starve because he can't eat according to NT rules is crazy.

Regarding bedtime: You could work on flexibility with the tv show by first changing the routine for one night of the week. "On Monday's from now on we'll watch this instead." Announce the change a week in advance. He won't be able to sleep the first couple of times. Keep trying.

Once he can tolerate a predictable variance from the routine, introduce well-prepared for changes. Literally tell him four days in advance that you plan to watch something else. Or however long it takes him to be to digest it and sleep. Again keep trying-- it won't work the first time!

He will learn to get to sleep on his own. It's just going to take a few years. The fact that you have found a routine that works consistently speaks incredibly well for you. It also makes you somewhat fortunate, frustrating as it is.

Thanks Vector -

My issue is; my need to have ds rested is greater than my need to have him flexible! The funniest thing about DS, which actually caused us to miss his AS for years, is that he is change reactive rather than change resistant. Meaning he will say yes to most changes with very little resistance. It's what happens after a change has taken place, he reacts to the change. He never even connects the reaction to the change. Once I started calendaring every meltdown, I could see the pattern. Now that I know, and kind of structure his world, the meltdowns have decreased enormously. It has made a huge differencec.

There will come a time (I'm hoping) when he is big and smelly and needs to shave, when he won't want me cuddling him to bed. At that time, it will be worth the lack of sleep.

At this point, I use his routine as leverage and it is helpful. While it is quirky and doesn't fit into the NT world, it does help me get my chores done early, so I get enough sleep.

Thanks, Kailuamom-- what you write about your son and change helpful to me in understanding myself. Great analysis.

kailuamom, how old is your son? mine had those kind of troubles too, from the day he figured out how to escape his crib , and that was before he started walking. i had to stay and sit next to him, not making a single movement or noise, sometimes for hours and hours. If i did so much as cough, he was ready to rumble, and we had to start again.
then he would wake up at 2 o clock and verryyyy quietly sneak into my bed, if i had the courage to get up i would take him back to bed most of the time, and sit. sit. sit.
this magically stopped one day, he was 6 at the time, i have no idea how. one night i put him to bed and went to get a glass of water to avoid dehydration during my long watch, and when i came back there was no noise in the bedroom. i asked him if he was fine, he said yes, i said is it ok then if i go to bed also, he said yes, of course! so i just said goodnight , thanking whatever entity had accomplished that miracle.
and: he stopped going into my bed. i explained that if he had to go to the toilets ( reason why he was waking up in the first place) it would be better to go directly back to bed when he was done so i wouldn't be tired and cranky the next day. worked like a charm .
don't lose hope, anything can happen

You are most welcome. It was really as a result of calendaring the meltdowns to figure them out. Everyone was talking about his bipolar and mood charting being necessary. Instead of mood charting, I just looked at what was happening at each instance and found the correlation. I now doubt the mood disorder. All of the unprovoked rages and meltdowns that caused that dx, well now I wonder if they were in fact provoked, and we just didn't know it because he's so agreeable. I also figured out some sensory stuff that way.

My poor baby is so unaware of how he feels until it is at explosion level. In the begining of this journey, we were all reliant on him to tell us how he feels (he's SO verbally expressive) that we didn't realize he couldn't communicate some pretty important components.

Both of my kids are born grazers. We basically offer 3 meals and 2 snacks a day, plus they know they are allowed to pull out and eat fruits and vegetables any time they want. Those between meal meals are the perfect time to "spoil" their appetites with carrot sticks, spinach leaves and dip, and so on My AS son is a great natural eater, as long as he doesn't have to be pegged into 3 meals, but my NT daughter as a huge sweet tooth so I have to really be careful about the sweet snacks.

My son was always the same way - eager to embrace change and try new things, but actually melting down as a result of it. I will always be grateful to this one preschool director (not even from his school, but when I was frantically looking for a new placement) who told me that just because a child was attracted to something didn't mean he had no problem actually handling it - children are often attracted to things that are not good for them. After she said that, I watched, and sure enough, the meltdowns consistently followed the things he had wanted to do. I sat down with my son after that, and we talked about how he experienced of these events, and he started to see his own pattern in them. Now he appreciates routine and staying within his comfort zone, has learned to avoid the worst of the situations he was attracted to but unable to handle, and has also developed a methodology for dealing with the stress of the certain situations he is attracted to but has difficulty with. Basically, your description of being reactive to the change instead of resistant to it is a very good one, and something important for many of our parents to be aware of. That reaction can hold quite a delay, so figuring it out is not always easy.

Interesting thread----very fitting for me at this time. My son's kindergarten teacher has set up a meeting for us on Monday morning to discuss my son's noisemaking in class. One day last week, it was all he did most of the day and did little to no work. Some days when I pick him up, they say he had a good day and did his work. Other days it is he worked in the morning, but in the afternoon, we couldn't get him to pay attention and he was very noisy. He does the same thing with me at home when we are trying to do his homework.

Right now the teacher and the OT are approaching it all on the basis that it is sensory related. I agree that there may be some degree of sensory to it, as I have always thought that my son has had auditory processing issues. But I believe there is an element of him doing this as a way to avoid doing his work. I am wracking my brain to try to figure out why my son thinks it is acceptable to do this in class, when he knows that when we go other places, he is able to control the noisemaking.

The funny thing is, my son is somehow absorbing the information at school. The other day he spouted off a list of about 10 words that start with the letter M, and asked me if these words start with the letter M. He is able to count to 100. He knows the days of the week, and when we wake up in the morning, he knows what day it is. He is learning how to write most of his letters even though they are not real neat, he is getting the concept.

The problem is, if he is going to be this loud and distracting to other children, I don't blame the school for wanting to place him in a special classroom. It really is not fair to the other kids. But, at the same time, I know my son is capable of learning, and I don't want him to continue to be placed in special needs classes. I am hoping this can be worked out, or we will probably be homeschooling him. The problem with this is, I don't know how much he will actually participate in learning with ME as his teacher!

My son actually sleeps 8-9 hours a night most nights, and he seems happy to go to school in the mornings. He is only in a class of 4 kids with 2 teachers, and is not bullied at this point ( he is in a very protected and controlled environment) So my dilemma continues. I guess he is still young, so we have a little time.

I am trying to do just as Chronos has suggested, to not worry, and honestly, I am getting to that point. I just don't know what else to do.

Wish me luck on my meeting on Monday!

angelbear try running or some vigorous activity for your son. my son had a noisemaking as his secondary stim and we practiced at home and he is fine with it. for his huge hand flapping stim, physical activity works the best, far from perfect but since it is not distruptive in the class (he is in regular class with no supports) we don't make it a big problem.

good luck on monday.