Low Functioning Autism and Toys

If you are a parent of a child with low-functioning autism, everything I'm going to say here is probably preaching to the choir.  You know what toys work for your child, and although they might not be the same ones I mention here, you know how hard it is to find toys they like.  I'm writing more as a response to quite a few lists I've read in parenting publications, titled something like "10 Great Toys for the Child with Autism!"  Those articles drive me crazy.  They are nearly always aimed at high functioning autism, and they include toys that not only would have absolutely no appeal to a child like Janey, but would sometimes be actually dangerous for her and those like her---things with tiny pieces, things that could be eaten, etc.  They also seem to be aimed at what the child SHOULD learn, not what they would enjoy.  So often, they have suggestions like co-operative games, which would be great as a teaching tool at school, but are generally not at all what the child with LFA like to do for FUN.  And toys should be fun.  So here's my response list, one you might be able to give a relative or friend that wants to get your child a toy they (possibly, no promises!) will enjoy.

1.  Fidget Toys  I could almost end the list right there.  The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy.  It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with.  The pictures tell it better than I can.  I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around.  These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks.  I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground  and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)

2.  Pin Art Toys  I have gotten Janey quite a few of these, and she loves them to death!  They are fascinating to her.

3.  Contained Water Toys  I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water.

4.  Various Fisher-Price Toddler Toys  And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price.  She adores their Roll-Around toys, little balls with things sealed inside to look at and shake.  And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals.  They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.

5.  Musical Toys  This is where I have to be cautious.  Although Janey adores music, often music toys are a little beyond her, and she completely ignores them.  I've gotten all kinds of toy pianos, and she seems to hate them, because she wants her music NOW, and it's a little more than she can do to learn to play them.  I've found she likes toy drums best.  Anyone can drum at a starter level and make an enjoyable sound!  She also SOMETIMES likes toys that play music, but in her case, if the songs are off-key or not sung as she likes, it makes her crazy, so I tend to avoid toys that might do that!

6.  Sensory Blankets  By this, I mean more blanket squares.  These are squares of usually very, very soft fabric, with often tags or other interesting textures sewn in.  They can be held, rubbed, sucked on, used good and hard and then washed.  Janey loves them.

7.  MAYBE Toys  There are a few toys that might be great, but that you would want to check with the parent about first.  They include Play-Doh, bubble stuff and bubble wands and drawing supplies.  You want to make sure the child doesn't eat Play-Doh.  Janey does, very much so.  She loves the stuff, but she loves it like an all-you-can-eat buffet, so we don't get it.  Bubble stuff is great, but again, some kids drink it.  Janey doesn't, but you'd want to check for sure on that one!  And art supplies----Janey has zero interest in drawing, but a lot of kids with autism do like to.  If you get art supplies, keep it simple!  Get paper, markers, crayons---not an elaborate paint set.

DON'T GET  And of course, like with everything I write her, I'm writing from my own experience.  But in general...Don't get things with lots of pieces.  They are going to get lost, or eaten or at the worst choked on.  Don't get games.  Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them.  Don't get books.  It pains me to say that, because I love books more than anything.  But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves.  Don't get videos.  Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos.  Don't get dolls or stuffed animals.  Imaginative play is not the strongest suit for kids with autism.  I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated.  And don't get food.  Many of our kids are on special diets.  Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!

I imagine this list, strangely, might be one of the more controversial blog posts I've written!  I know I don't speak for everyone.  Please feel free to disagree and add your own suggestions.  But I hope these will help someone trying to buy for the child with LFA that they love!

My fantasy wish list

Janey seems to be over whatever was happening this weekend, the horrendous crying spell.  We are recovering---Tony and I, and the boys, and most of all Janey.  But it's left me thinking about our lives a lot, and especially---what would help?  What would make it easier to be Janey, and to parent Janey, and to be a sibling to Janey?  I had some ideas.  These are not ideas anyone can make come true.  They are more like fantasy ideas, but I wish they weren't.

The biggest idea, the biggest truly helpful thing---a drop-in center for respite.  That is what I daydream about.  I've written about it in the past (here).  I dream of a center staffed with trained autism professionals, along with paraprofessionals and volunteers (many high schools now require volunteer hours, and this would be a great job for people interested in a career in special needs).  You could pre-register there, and get assigned a certain number of hours, and be able to bring your child in with very minimal notice.  This would in so many ways be more helpful than in home respite care.  That's because what we crave most is a chance to just relax at home, maybe watch TV or a movie or cook or talk with the boys or even have a few minutes of adult time.  We don't want to clean the house and pay for dinner out, which having in home respite would require.  In fact, we do have in home respite---the boys.  If they are available and we have money to pay them, they can always watch Janey, but it's too expensive for us to go out often, and it's not what we need.  We need some time as a family to regroup from the incredibly tough job of parenting Janey.  And she would benefit greatly from a change of scenery at times too.  I picture a place with a sensory room, a fenced safe outdoor play area, autism friendly toys---not a place for learning or drilling or school, just a recreation place that the kids with autism would love and their parents would love even more.

Another thing that would be helpful---a time machine.  I wish for this because I feel like right now, we are in the infancy of understanding autism.  The epidemic, if there is one, has just started in the past 10 years or so. We are at the stage I imagine is like the early stages of any new illness on the scene.  People are desperate, people all have theories, and everyone is well meaning, but no-one completely knows the best practices to follow.  No matter what you do, there is something else you aren't doing, and you always wonder if that other thing is what you SHOULD be doing.  I wish I could go forward 50 years, just for a day or so, and see what has been learned about autism.  What treatments have stood the test of time?  Then I could come back and go forward confidently with what I've learned. Or maybe I'll learn nothing has shown to help.  Then I could just relax and concentrate on giving Janey the best life I can with what we already have.

The next wish is one that is similar to almost anyone's wishes---unlimited money!  I wish I had enough money for a new house, one with a room that could be made into Janey's own sensory room, one with a big backyard, totally fenced, so Janey could run around all she wanted, one with an indoor pool (I'm dreaming big here!).  I wish I could take those great catalogs full of autism friend supplies that are hugely overpriced, and just order anything that caught my eye.  I wish I had money to fly all the mothers I've met here for a long weekend in a luxury hotel, where we could laugh and eat fancy food and drink fancy drinks and regroup and relax.  I wish I would not have to worry about every cent, or our lousy health plan.  I wish I could buy Janey anything that might help her without ever thinking twice.

My last fantasy wish---mind reading.  I wish more than anything I could go inside Janey's mind, and see what it was like.  I wish I could know what she is feeling when she cries all day, or when she manically repeats lines from videos, or when she obsesses over certain foods, or when she loves a piece of music, or hates it.  I wish I knew how her perception of the world is different than mine, and how I could modify her surrounds to work with that.  I wish I knew how much she understands of what she hears.  I wish I could be her, just for a little while, so I could be a better mother to her.

There are so many things I don't have to wish for, because I already have them---a great school for Janey, a wonderful husband and siblings for her, her good health---all of that.  I know I am lucky in so many ways.  But for Janey, I still have so much I wish for.

What to do, what to do...

I mean the title in two ways. First, summer school will be over Friday. I need to keep Janey busy and out of trouble for about a month until school starts. Literally, I need to figure out what to do with her, how to keep her happy and give her a good summer while also staying sane and keeping her safe. The options are fairly limited, and part of that is the other "what to do"---how Janey has been stepping up her game in terms of being naughty. I had a good talk with her great summer school teacher and great ABA specialist this morning. I told them about my tough night with Janey (more on that later) and they told me about some of her antics at school. The big one is the playground there. They sometimes go to a bigger playground down the street, but sometimes to the smaller school one. Janey likes the bigger one, and when they go to the smaller one, she is constantly on alert for ways to try to sneak out and go to the bigger one. The other day, she was watching the gate, and waited until it was opened by a teacher, looked around and saw that the figures of authority were across the playground, and made a run for it. She didn't make it, as they, like us, are always, always on alert for Janey, but they noticed how she is getting better at planning and more determined to get her way.

At home, it's a battle without end to keep her from destroying the house. The worst time for me is the time between when we get home from school and when Tony gets home, especially days the boys aren't here. That's about 2 hours, from 3-5. Last night, it felt like 200 hours or 2000. Janey had several goals. She wanted to get the Febreeze down from the top of the fridge and spray it around, she wanted to have some pepperoni, she wanted to run water in the bathroom sink until it overflowed, she wanted to throw crackers on the ground. Literally every time I was more than a few feet from her, she did something toward her goals---pushed a chair over to try to climb and get the Febreeze, worked on figuring out how to open our new fridge belt to look for pepperoni (which we were out of), run to the bathroom and turn on the water full blast, ask me for crackers, promise to eat them nicely, then toss them everywhere, and when told to pick them up, pretend to pick them up while actually stomping on all of them. I was at my wit's end.

And I truly don't know what to do to stop all this. I go down my list of ideas. Time out is useless, although I still try it. Yelling does less than no good. I try to "identify the antecedent" which is the behavioral approach, and it's pretty easy to identify---she wants what she wants. It's often a sensory thing, and I try hard to give her alternatives. The house is full of sensory toys, at one point yesterday I gave her a bath to let her play with water, she is always welcome to play outside in the wading pool, we have spray bottles with water I let her use in the kitchen or bathroom---but she doesn't accept substitutes. She doesn't care if I don't want her doing what she is doing. That makes little to no difference to her.

And taking her places, like playgrounds or splash parks, is terrifying. She does not stay with me. She runs, and I am increasingly unable to run as fast as she can. I have asthma, and I am 46 and not in Olympic shape. She is almost 8 and very, very strong and athletic. I can't pick her up any more.

I feel like I'm writing this post too often. But it's all that's on my mind lately. I do hope this stage passes. Meanwhile, I have a month to fill up. Somehow.

Autism and Toys --- Some Thoughts

I've written before about how hard it is to find toys that engage Janey. It's something that has frustrated me for years. She has little interest in most toys, and is unable to use others, due to the difficulty of operating them or the small and dangerous pieces she might put in her mouth, or just due to her love of tossing things all over the floor and losing them. We are left with few toys that work for her, and this is upsetting to me, as I am a big believer in toys and how important they are for kids. I've figured out a few things that work for us over the years, and here are a few ideas...

1. Fidget toys. These are usually things actually designed for people to have at their desks in offices, and to play around with as a way to fidget. Not all of these are at all suitable, of course, like things with magnets or breakable ones, but lots are---mushy figures you can push in, Tangles that can be turned in all directions, Kushie type toys, toys with water inside you can move from side to side to see the waves move, things like that. I have gotten a lot of these from office supply sites.

2. Baby toys. I used to resist these, wanting Janey to have "age-appropriate" toys, but lately I've kind of given up on that. Baby toys are pretty cool these days! They have all kinds of textures, they often make noise or play music, they are non-breakable and can't be eaten---in a lot of ways, they are perfect for Janey. She is most interested in electronic ones, like V-Tech or LeapFrog toys, and I've had good luck finding them used.

3. Water toys. Janey, like so many kids with autism, loves water. She loves being in the bath or the wading pool or any kind of swimming. Anything that can stand water is a great toy for her. She loves to toss things in water and see what happens, so it's great to find toys that allow that.

4. Balls. Janey loves to kick or throw balls. She is getting better at it! I try to find balls that are safe for the house somewhat, so she can use them all year round.

5. Stuffed Animals. This is a new category for Janey, because I have a new approach to them. I'd never buy one new unless it was a very special circumstance, but at the thrift store I like, they sell big bags stuffed VERY full of assorted stuffed animals, for usually $4. They have about 15 toys in them! I take these in the car, and hand one to Janey at the beginning of almost every drive. She likes holding them, feeling the textures and exploring them, and every now and then she finds one she gets attached to, like recently a monkey and an elephant. I think of them as disposable, as it's impossible to keep her from sometimes wrecking them or losing them, but at that price, it's okay.

6. Bubbles. Janey has learned how to blow bubbles herself, although you have to watch her pretty carefully so she doesn't spill the whole jar of them the minute she picks them up. She also loves bubbles blown for her.

There are some toys you always see in lists of "Best Toys for Autism" that just don't cut it for Janey. A lot of these are toys that are for higher functioning kids with autism, like Geosafari toys or complicated train sets. Puzzles don't work well, just because she will so often toss the pieces, and I don't have the organizational skills to keep track of them well. Playdoh WOULD be great, as she loves it, but she loves to eat it as much as play with it, and although we've given it second and third and fourth chances, she can't resist. Although I think she likes to draw and paint at school, at home, she doesn't seem to care for it. And she has never shown much interest at all in dolls, which is probably one of my biggest areas of sadness about her. It's my dream, not hers, to have a daughter that loved dolls as I did.

Of course, one of her favorite "toys" is her iPad, but that's a different category I'll write about soon!

Toys

I love toy stores, and I love getting interesting toys for my kids. However, I've found over the years that the toys I like to get are not always the toys the kids like to play with. I've bought about a million blocks since I've been a parent, and they have barely been touched. I've bought several beginner baby video game type systems for Janey, all of which overwhelm her. I've gotten her many dolls, most of which end up as chew toys. William was the easiest to buy for---anything Thomas the Tank Engine or Brio got heavy, heavy use. Freddy always preferred electronic entertainment. Janey---well, it's very hard to get her interested in a toy at all.

What has worked? The best kind of toys for her seem to be what are called fidget toys. They are ones you can hold and move around in your hands---things like squshy balls, Tangles, stress balls, textured baby type toys, things like that. She also likes musical toys---ones with buttons to push to play music. She has always been interested in Play-Doh, and I'd very much love to get her everything Play-Doh that exists, but she eats it, always. Yesterday was a little bit of a breakthrough in that she found some I had hidden and actually played with it for about 15 minutes without putting it in her mouth at all, so maybe that is getting better. She rolled it into a log and a ball, making me very happy. Lately also she likes pouring water or beans or something from one container into another.

The thing that's hard to do is not think age-appropriate, but much lower than her chronological ages. It's so tempting to me to get her things I would like her to like, like Polly Pockets or Barbies or dollhouses. I have to tell myself that she might like them some day, maybe even into her teens or twenties, but right now, the best kind of toy for her is probably aimed at about a 1 year old, and there are lots of neat toys out there for that age.

I've searched a lot for web resources for autistic kids and toys. As I often find, most are aimed at higher functioning kids than Janey. Lots of Thomas, lots of games that she would in no way understand. It seems like someone recommends a toy for autistic kids, and then that just gets copied by everyone, whether most autistic kids would like it or not. I'd love it if there were a site just for lower functioning kids with autism, with toys they can't choke on, that will actually hold their interest. I see some great things sometimes in school or therapy catalogs, but they are priced for those kind of budgets, not mine. Another cool thing I'd like is if some autism agency would lend good toys, like a toy library for autism. I'd be happy to pay a monthly fee to have access to some of the great toys I can't afford. It would be another of those services that would help people like Janey much, much more than another grant for research.

Meanwhile, I'll just continue limping along getting the occasional toy that's a hit with her. I think toys are a huge, huge part of childhood, and it's one of my biggest frustrations about autism parenting---that there is so little to give her that will engage and interest her.

Wasted money, discouraged

I did a lot of research the last few days, trying to get ideas about good toys for autistic kids. Janey has very few toys that engage her, and I would love to find some. I read a few places how some kids like the Vtech V-Motion. She's interested in video games, at least in trying to get in on ones the boys are playing, although she can't figure them out. I thought it was worth a try, so bought her one and one game (Wonder Pets). The console wasn't that much---$40, but the game was another $15. She had less than zero interest. She didn't get how the motion sensor worked at all. You can set it to use the joystick, which I tried, but she wasn't into it much that way either. Part of it I think is the horrible graphics. I don't know why that kind of system is about 20 years behind "real" systems. And part of it is just that all of a sudden the game demands you do something like figure out what letter or shape to use, and she can't do that. I wish there was a game JUST FOR HAVING FUN for her age---one with decent graphics, where she could move a controller to drive a car around, or explore. I think she's be able to figure it out. Oh, well. I also got her a big mushy ball with pocky rubber spikes, and she likes that, and I got a bunch of Mister Potato Head stuff, which engaged her for about 15 minutes (with me right there of course, egging her on). And there went most all of the money I managed to make working all week on ebay. I wish I had more money. Don't we all. It just seems so unfair sometimes thinking there is ANYTHING out there that could help Janey that I just can't afford. I know that is life, but sometimes I wish life wasn't like that. I would love to get her an iPad. I think she'd be able to figure that out easily, with the touch screen. I'd like to get her a whole huge amount of sensory type toys, fill a whole room with them (if I had an extra room). I'd like to find the perfect camp for when she's a little older. I'd like to be able to even afford after-school at her school. I'd like to be able to get her extra nice clothes. I wish I could afford a babysitter, but with that wish I also would have to wish I KNEW someone would would babysit her for pay. As you can see, this is a dreaming session. I just felt so fed up today with how I chose to spend the little money I had on something that seems like a waste now. It might work for her someday. And it's just money. I'm just indulging myself in self-pity here. Hopefully anyone reading has given up on this post by now, so they don't have to hear all this! But if you didn't, I should say Janey was quite sweet today, good at the ToysRUs, cheery even if she didn't want to play anything, looking precious. So I can't blame her for my rotten mood!