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Hsing a child with autism? Please share your wisdom!


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So my boy (age 11) has done well in the public system, but is now ready to come home for more intensive 1-on-1. He has moderate-to-severe autism. It occurred to me yesterday that his needs will be very different from my dd's "typical" needs. He will need some degree of structure (to which this mama says YIKES!) He will need limited distractions (phone being off is fairly typical here anyhow, but I'm thinking of making curtains to separate our dining room area from everything else.) He will need lots of hands-on things, visual things, and a mom who can pull this off! HA!

 

Anything you wish you knew when you first started with a child with ASD? Sensory system is mostly regulated with a snoezelen room in our basement, although I'd love to add a swing! Have you done anything special with your environment to help with smooth sailing? In particular, I'm worried about him understanding that home is where he schools, so I'd like a defined place at least for our 2 cores: math and comprehension. The rest is fun, hands-on and can take place anywhere. I just feel like I'm missing something, that there's some wisdom out there that I need to glean from...

 

Has anyone made a journal which they use to highlight the celebrations and improvements? I can imagine there will be more frequent days of needing to look at the highlights here... what do you include in your journal? How do you have it laid out? (I am picturing writing ANYTHING worth celebrating. For example, today he was thirsty and got a glass and filled it with water all by himself for the very first time!!!) Do you outsource anything? Does your child have a hard time separating your mommy role vs teacher role? I can picture him yelling at me when he doesn't want to do school. Any tips?

 

As you can tell, I'm all over the place here. I feel like a bee gathering all the info I can. I'm excited, but really want to start on the right foot. Any words of wisdom are greatly appreciated!

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How great about him getting a glass of water for himself!

 

It has been very helpful for ds that we have a separate room for school. I have a much easier time keeping his attention that way.

 

Is there anything he likes at school that you can recreate at home?

 

Probably not exactly what you are looking for journal wise, but I started filling out this journal page http://www.graceisov...l-page.html?m=1 last spring with ds. At first, I was just helping him fill one out for his day, but now I also do one myself. It has been great way to look back at all the small steps we have taken forward.

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My DS isn't fully diagnosed yet, so most likely high functioning. We have always homeschooled but he does fight it. What has worked well for us is to slowly add routines. We did X every day and fight through until it becomes a habit. Then we did XY every day. Then we established that mom might sometimes add W and Z to the day... It has been a long process and there are still a few bumps. At one point I think I made a whole list of everything that I could ask him to do in school in a day and gave him a specific amount of time that was mine (I just told him 8 hours- not that we ever do that many hours). So if we've not done the full list or a full 8 hours he isn't "allowed" to be surprised that I'm asking him to do school. He's a by the rules kind of guy so that helped him get an idea of school vs playtime.

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You wrote that you are worried about him understanding that home is where school is, and also that you are thinking of making curtains to separate our dining room area from everything else.

But rather than just thinking of it as separating a part of your dining room?

 

Perhaps you could think of it as creating a 'school room', and get him involved making his school room and making and fitting the curtain.

Though you could also fit a second curtain, to cover the wall directly in front of him, when he sits at the desk.

So that when both curtains are drawn, it doesn't really feel like the dining room anymore, and also covers any distractions on that wall.

Where it would probably be better to use plain rather than patterned curtains.

So that it really feels like a different room, that is his own school room and where he does his school work.

Which he was involved with making.

Then when goes in there and closes the curtains, home is outside, and he's in school now.

In his own school.

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How great about him getting a glass of water for himself! It has been very helpful for ds that we have a separate room for school. I have a much easier time keeping his attention that way. Is there anything he likes at school that you can recreate at home? Probably not exactly what you are looking for journal wise, but I started filling out this journal page http://www.graceisov...l-page.html?m=1 last spring with ds. At first, I was just helping him fill one out for his day, but now I also do one myself. It has been great way to look back at all the small steps we have taken forward.

Thank you, Jennifer! You've given me the idea to sit in on a few of his school days and see what he likes. I know he likes his teacher this year lol, but I don't think I can bring her home, as good as she is! Those journal pages are great! Thank you for that! That encouragement (looking back at the small steps taken) is what I think I'll need, especially during those days/weeks that it seems nothing is working out. I know I'll be battling that monster! :001_unsure: Thank you for your insight and the link!

 

My DS isn't fully diagnosed yet, so most likely high functioning. We have always homeschooled but he does fight it. What has worked well for us is to slowly add routines. We did X every day and fight through until it becomes a habit. Then we did XY every day. Then we established that mom might sometimes add W and Z to the day... It has been a long process and there are still a few bumps. At one point I think I made a whole list of everything that I could ask him to do in school in a day and gave him a specific amount of time that was mine (I just told him 8 hours- not that we ever do that many hours). So if we've not done the full list or a full 8 hours he isn't "allowed" to be surprised that I'm asking him to do school. He's a by the rules kind of guy so that helped him get an idea of school vs playtime.

 

Thank you! I know his schedule at school fluctuates and he does do well with minimal notice (5 minute warnings kind of thing) which is GREAT for my fly-by-the-sea-of-my-pants kind of homeschooling! My dd loved being hs'd because every day was an adventure lol! I can totally understand the rigidity though, and I suspect I will see battles about working.

 

You wrote that you are worried about him understanding that home is where school is, and also that you are thinking of making curtains to separate our dining room area from everything else. But rather than just thinking of it as separating a part of your dining room? Perhaps you could think of it as creating a 'school room', and get him involved making his school room and making and fitting the curtain. Though you could also fit a second curtain, to cover the wall directly in front of him, when he sits at the desk. So that when both curtains are drawn, it doesn't really feel like the dining room anymore, and also covers any distractions on that wall. Where it would probably be better to use plain rather than patterned curtains. So that it really feels like a different room, that is his own school room and where he does his school work. Which he was involved with making. Then when goes in there and closes the curtains, home is outside, and he's in school now. In his own school.

 

Exactly! I did some research last night and discovered loft cable systems as an easy way to separate the room. It's open concept, so I have to be quite strategic in my planning! I love the idea of having his input and allowing him to make choices about his school room. Thank you!

 

I have heard some moms say that requiring students to wear a uniform during school time helps with the transition between normal home life and seatwork. I haven't tried it yet, but I would think for a spectrum child, it might really be helpful.

 

I never thought of that! I'll keep that in my back pocket and if it is needed, then I'm willing to try it! Thank you!

 

I think I'll post some pics of the space I plan on changing, maybe someone will have an idea or three :blush:

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Here are some of my BTDT thoughts.

 

He is used to a scheduled somewhat regimented day. He is also used to doing school ALL day. Take advantage of that! I often here homeschoolers tell people to start slow work into it. That is not the advice for an ASD kid. What you want is a schedule that you can stick to!

 

Create a schedule. This doesn't have to be from 8:00-8:30 math... but how about we do math first, then cuddle on the couch for read aloud time, then... you get the idea. If he always knows what is coming next, it will help. Give him a physical copy of the schedule. It may be posted on a wall, on his desk, or laminated and he just keeps in with his school stuff. Have a set start time each morning. ASD kids really do crave routines and flourish with them. I know as a routine hating mom, how hard this can be, but it will make your life much easier! Also as he gets older, you can add more flexibility to the routine.

 

Your idea of partitioning off the dining room is good. When working on things that require concentration, he will need an area that is clean, organized and distraction free. We have always used the family room in our basement for homeschooling. We do most of our work sitting on the couch. When we started, the kids used desks and we used the couch for reading together, but they gradually migrated from their desks to the couch and stayed there for everything, using lapboards to write on :).

 

I will suggest that if he has trouble staying focused, some ADD tendencies, changing scenery can help. Moving from the table to the couch resets the focus. Moving back to the table does it again. Sensory breaks are definitely a good idea. We had a platform swing when ds was younger. It was the best way to reset him. We also had a trampoline he could jump on and an exercise ball and so much sensory stuff! It really helped.

 

When you start, he will probably need you right beside him all the time. My almost 16 yo doesn't really need me at all anymore <sniff> You will be amazed at the progress that working 1 on 1 brings. Of course you will also be amazed at the frustration 1 on 1 brings, so don't let it get you down.

 

I think the one thing someone could have told me that might have made me feel better in the beginning is that ASD kids take two steps forward one step back. They regress and lose things ALL THE TIME. I thought that wouldn't be true homeschooling like it was in ps, but it still happened. It is frustrating, but I wish I hadn't let ds see as much of my frustration as I did.

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A visual schedule would be very helpful, I think. It can be just pictures or a word/picture combo. And be sure to give him plenty of sensory breaks-- running, jumping, swinging, whatever helps him re-charge.

 

Good luck to you!

 

Thank you, Caroline! We're really on the ball with sensory stuff here, even have a full sensory/snoezelen room he can escape to... but a swing is really sounding appealing! I would love one of those specialty frames for in the house so I didn't have to damage my ceiling! They're so much money though, ugh!

 

Here are some of my BTDT thoughts.

 

He is used to a scheduled somewhat regimented day. He is also used to doing school ALL day. Take advantage of that! I often here homeschoolers tell people to start slow work into it. That is not the advice for an ASD kid. What you want is a schedule that you can stick to!

 

Create a schedule. This doesn't have to be from 8:00-8:30 math... but how about we do math first, then cuddle on the couch for read aloud time, then... you get the idea. If he always knows what is coming next, it will help. Give him a physical copy of the schedule. It may be posted on a wall, on his desk, or laminated and he just keeps in with his school stuff. Have a set start time each morning. ASD kids really do crave routines and flourish with them. I know as a routine hating mom, how hard this can be, but it will make your life much easier! Also as he gets older, you can add more flexibility to the routine.

 

Your idea of partitioning off the dining room is good. When working on things that require concentration, he will need an area that is clean, organized and distraction free. We have always used the family room in our basement for homeschooling. We do most of our work sitting on the couch. When we started, the kids used desks and we used the couch for reading together, but they gradually migrated from their desks to the couch and stayed there for everything, using lapboards to write on :).

 

I will suggest that if he has trouble staying focused, some ADD tendencies, changing scenery can help. Moving from the table to the couch resets the focus. Moving back to the table does it again. Sensory breaks are definitely a good idea. We had a platform swing when ds was younger. It was the best way to reset him. We also had a trampoline he could jump on and an exercise ball and so much sensory stuff! It really helped.

 

When you start, he will probably need you right beside him all the time. My almost 16 yo doesn't really need me at all anymore <sniff> You will be amazed at the progress that working 1 on 1 brings. Of course you will also be amazed at the frustration 1 on 1 brings, so don't let it get you down.

 

I think the one thing someone could have told me that might have made me feel better in the beginning is that ASD kids take two steps forward one step back. They regress and lose things ALL THE TIME. I thought that wouldn't be true homeschooling like it was in ps, but it still happened. It is frustrating, but I wish I hadn't let ds see as much of my frustration as I did.

 

 

Thank you for this, Debbie. I read your response this morning but I was volunteering at a place where I couldn't respond... so all day I've been thinking about what you said. You are correct, might as well keep the schedule if he's used to it. I hadn't thought of it that way. He is used to being at school all day, and I may as well make a routine that we can both live with and tweak as we need.

 

I appreciate too, your insight about changing locations to reset focus. Lack of focus has always been his biggest roadblock, so I do appreciate adding this to my toolbox of ammunition!

 

Your platform swing, was it in your house? We're in Edmonton where we're lucky if we have 5 months of nice outside time. When half the school year is too frigid to swing outside, we really need to be looking at an indoor swing. I mentioned above about this, but I'm stuck on the ceiling issue vs. cost of indoor support system. Arg.

 

That frustration of 2 steps forward 1 step back is what I'm dreading most. I know it's going to happen, it's happened repeatedly throughout his life across most skill sets. He just went through a period of months where he completely forgot his age and basic information like phone number and address. He answered 7 when he is in fact 11, and would just bring out the echolalia and repeat the end of the question when he was answering correctly (after a lot of work) beforehand. Just when something is mastered, it seems the brain turns to mush until it literally gels back together. Arg! So discouraging! That's why I'd love to do memory pages or journalling, just to keep track of every little good thing to celebrate. He says something every single day that amazes me. Today we were driving over serious potholes when he warned me, "be careful there, young mommy. It's ouchy here." LOL! I know it's echolalia from somewhere, but he's applying it appropriately, and that's the kind of stuff I just have to celebrate!

 

Thank you so much for your encouragement!

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The platform swing was in our house. Dh took a 2 x 6, about 18" long and cut a hole in the ceiling board to fit it. Then he screwed it into the ceiling joists with 4 screws. Then he screwed an O ring into that. We had this platform swing and attached it to the O ring with a swivel so it could spin and turn in all directions.

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  • 2 months later...

For what it's worth, my dd8 with autism hates a "school area" and likes to write out a schedule with me each day that includes reading on her bed, jumping and bouncing in the backyard, science at the kitchen table, english on the rug in the living room, etc. It is most important to her to know what needs to be accomplished and to work with her. I also use a ton of reinforcers!!! I have thousands of stickers, tiny toys, and candies, activities, etc to earn for completing tasks. I use what she is wanting to do, eat, play, etc as our reinforcer and have good success that way.

 

I keep it real. If she is rockin the school work one day we will do extra. If she is struggling (or tantruming) one day we might only get 1 math problem done and feel like we climbed mt everest.

 

This will be a great opportunity to find what dc is good at and interested in so you can start steering your school in that direction.

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The platform swing was in our house. Dh took a 2 x 6, about 18" long and cut a hole in the ceiling board to fit it. Then he screwed it into the ceiling joists with 4 screws. Then he screwed an O ring into that. We had this platform swing and attached it to the O ring with a swivel so it could spin and turn in all directions.

 

Momto2Ns, thank you, that inspired me. We did purchase 2 swings which we can switch around, and they'll be going up next month for his birthday. Excited! So happy to finally do this!

 

 

For what it's worth, my dd8 with autism hates a "school area" and likes to write out a schedule with me each day that includes reading on her bed, jumping and bouncing in the backyard, science at the kitchen table, english on the rug in the living room, etc. It is most important to her to know what needs to be accomplished and to work with her. I also use a ton of reinforcers!!! I have thousands of stickers, tiny toys, and candies, activities, etc to earn for completing tasks. I use what she is wanting to do, eat, play, etc as our reinforcer and have good success that way.

 

I keep it real. If she is rockin the school work one day we will do extra. If she is struggling (or tantruming) one day we might only get 1 math problem done and feel like we climbed mt everest.

 

This will be a great opportunity to find what dc is good at and interested in so you can start steering your school in that direction.

 

thebacabunch, thank you, that was quite real, reassuring, and doable! I'll be returning to read this a few times I'm sure. Thank you.

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