More information, please.

Most of the frequent articles and reports about autism are sensational and include little accurate information about autism.

Here in California we’re having a drought.  Every article about the drought contains at least a brief reference to how a drought is defined, how much rain we’ve had compared to previous years and suggestions for conserving water. Some say that many of the drought related articles are politically inspired, but the information is still there.

Maybe the drought isn’t the best comparison, topic-wise.  I’m sure everyone has heard that the actor, Philip Hoffman, died recently. A sad loss, and I am not trying to relate the topic of addiction, merely the information given in the articles. I learned more about heroin in just a couple of articles about Mr. Hoffman’s death, than I learned from reading 70’s rock star biographies.

There was another kind stranger autism article recently. A restaurant manager gave a mother and her autistic daughter a free meal after another customer complained about the child being too loud. Of course I applaud the support or acceptance that this stranger offered.  But I also resent the tone of these stories is that the kind stranger is doing a marvelous favor and paints the child and parent as a tragic situation.

These articles could have included an explanation about how self-stimulatory behavior, like yelling, helps people, and not just autistic people, deal with the sensory overload they can experience in public.  How about an interview or link to an autistic person’s account, like this post, Quiet Hands?

There are too many stories about autistic people, usually children, going missing, often with a tragic end. The public needs useful information about autism and wandering, especially when a news report is a about a human being who is currently missing. All news reports should contain descriptions of the missing person using respectful and meaningful terms.

Describing an autistic eight year old child as being like an infant is demeaning to the person and inaccurate information to provide strangers who are helping in a search. Tell us how the missing person is likely to respond. If the person is not going to respond to traditional communication methods, offer alternatives, such as the person’s favorite familiar items, songs or recordings. These details should be in articles about anyone missing.

I’d like to see law enforcement professionals answer questions like: How soon should a concerned parent or caregiver call when a child is thought to be missing? What about an adult? If we see someone who fits the description, or spot what may be an important clue, how should we respond?  How can parents and caregivers of children prone to wander keep our children safe and still encourage them to interact with the world? What kind of training is given to law enforcement professionals to handle situations involving people with disabilities who may respond differently than the general public?

I wonder if these details are left out of some articles because they are good bait for controversial comments.  There are many topics other than autism that have the same information and controversy challenges.  So this is me, stepping up onto my soapbox to ask for more accurate information. Don’t assume we know anything. Especially on the internet, give us links to define terms, not links to other articles.

I’ll keep reading and someday, the information will be there, and hopefully a new trend will be started.

She can play anywhere

Playing in a bathtub at Home Depot.

Playing in a bathtub at Home Depot.

Last summer we got rid of the stroller, and we’ve been able to do most errands and shopping as long as we are quick. We have been working on spending more time out in the community.

It can be difficult, but we’ll encourage her to touch appropriate things, choose her own items at the store and even play. We only let her play for a few minutes, and we’ll give her warnings and that seems to avert meltdowns, though she’ll often want to return to a favorite spot in a store.

 

Loving the purple curtains at Sears.

Loving the purple curtains at Sears.

We’re getting a lot of entertainment out of curtain departments lately. I am careful that she doesn’t make a nuisance of herself and we don’t stay long.

Dancing in the strobe lights at Spencer Gifts

Dancing in the strobe lights at Spencer Gifts

We went back to the same mall two weeks in a row and spent quite a bit of time in this store. Luckily it was empty and the same nice girl was working both times and she had no problem letting R. dance in the lights.

My new moves

I mentioned that we were walking a lot in the community in my last post.  What I didn’t mention is that she does still have some behaviors, they are just a little different. She will tug on our hands to pull in the direction she wants to go. She will point sometimes and look at us with an expression that is demanding. I’ll prompt her to say go this way or something relevant.

She doesn’t like to wait, or stand for a long time while I look at something.  I do honor that for the most part, but if I really need to do something she has to wait.

When she gets upset she will throw herself onto the ground (usually to her knees at first) and cry. Sometimes I have no idea what sets her off, but usually it is some change to the way we are doing things or something she perceives as a change. Like parking in a different spot. At one Target entrance there is a separate entrance and exit. She thinks we should always walk out the same door we came in.

I always wished she could tell me what she wanted in the store, well there’s a case of be careful what you wish for. She can remember where the stuffed animals are in any store and find her way there. We were shocked to realize she could find her way to the Disney store (she led us) from any spot in the Serramonte mall. (a large mall shaped like a cross). She had only been there walking around one time before like a month ago.

In the Disney store she is after a plush Kermit. It is tempting to buy her everything she wants but if I do that I am setting up an expensive precedent. So I don’t buy her anything. I tell her we can say hi to Kermit (or whoever) talk to him for a minute and they we have to say good-bye. This works, but it takes a lot of urging.

She is incredibly strong. At this point she is more than half my height. If she pulls or pushes me and I am off balance she could theoretically knock me over. Sometimes I have felt afraid that I could not control her, that she would run into a dangerous situation or…

So I invented a procedure for myself to restrain her. Now that sounds terrible, but sometimes I do have to take control.  She’ll flop down in the middle of the street or a busy area where I can’t protect her until she is finished.

When we walk she usually stands on my left, with her right hand in my left hand. If she suddenly flops down to the ground, it is not easy to pull her up by my left hand, and I’m always afraid I’ll hurt her. So first I’ll say Up 1,2,3. Sometimes that works and we proceed.

If that doesn’t work, I will transfer her right hand to my right hand and slip my left arm around her back and put my hand under her arm pit. Then I have enough leverage to lift her up.  That often calms her and we can proceed. It is also easy to switch to that two armed position while we are walking if she needs extra direction.

If that doesn’t work, I can slip my left hand further around her so it is in front of her, like a bear hug from the back.  It’s tough to move in that position and it is easy for her to kick me, but it does work.

I took R. to the post office to mail a box. I probably should have gone at a time when I could go without her, but I had to pick up something anyway. So I got the stroller out, and put my box in the stroller. R. cried instantly, not sure about the box, the stroller (we haven’t been using it) or what we were doing.

I got her to help me push the stroller, and we made it up the hill to the Post Office with no problem. As I turned to enter the Post Office she started to cry and flopped on the ground. I pushed the stroller so it would not roll down the hill and did my “moves” on R.

A woman came along, and I’m sure to her it looked like I was totally out of control of the situation. She pushed my stroller out of arm’s reach (grrr!) and then got in R.’s face to try to help. Which of course made the situation worse.

I finally said, she has autism, she is upset because this is a new experience, I’ve got it under control, thank you. The woman moved away and I wrestled R. and the stroller into the Post Office.

As soon as we were inside the building, she stopped crying and said I want iphone.

Summer fun

Stroller-less at Stern Grove

 

Obviously I haven’t posted in a while. I’ll confess that I’ve been taking a break from autism. Not from R., and I’m not ignoring any challenges or anything. It’s just after a year of all the kindergarten research and visits, and all the meetings and so forth I just needed to think about something else for a while- having fun with my daughter.

Fun at the Arboretum.

Preschool came to an end. I’m not sure she understands that, it was bittersweet to say good-bye to the teacher she has loved for over two years.  She had an opportunity to visit her new kindergarten class. (I’ll call it a kindergarten class, but it is technically K-2). We went at the end of the day for their free play and circle time. She wasn’t too thrilled at first, she kept yelling home. I didn’t know she even knew that word. But once she got in the classroom she seemed to feel comfortable sitting in the circle time area – it was set up similarly to her classroom. She actually participated a bit.

She finally moved to a big bed. Yes she has been sleeping in a crib all this time. Every time I went to move it she would get upset. So I made the switch while she was at school and it has been fine. She loves her new bed. And I saved the crib mattress for jumping, so it is a win-win situation.

We have not used the stroller for months now. (Other than the long walk to the zoo). It used to be we could not go anywhere without it or letting her sit in a shopping cart. Now she just loves to walk around the grocery store and even noisy Costco. I swear she is the happiest person in the entire place. She grins from ear to ear, and practically prances through the store.  I remember in the baby books they would tell you to take your baby to the grocery store and label everything. Well, here we are at age five spending five minutes admiring and labeling corn.  I’m not complaining. I’m actually grateful to get to go through this period with her.

We got her hair cut very short- a pixie cut. She just loves her short hair. She even rubs her head on us now. She never did that before.

Sitting at McDonalds - I still can't believe she does this.

Noisy feet, happy kid

We went to the zoo over the weekend.  It has been a few weeks since we last visited.  R. was really excited and wanted to get out of the stroller almost immediately, which is rare.

She walked the entire length of the zoo.  She was running, skipping, prancing and doing this stimmy feet dragging thing she does.   It was bugging me because she was getting out of control and prone to tripping often.  Which is not the end of the world, but the concrete at the zoo is particularly good at ripping jeans.

After I told her many times to slow down and walk nicely she looked at me and said No, no no and pinched my mouth.

I realized that I was annoying her as much as she was annoying me.  I also realized that I was trying to get her to act normal.

So I found places where she could run.  But when we were walking around the zoo looking at the exhibits l insisted she go slowly but let her skip and shuffle to her heart’s content.

She was so happy, she smiled and laughed and talked (some of which I actually understood) and had a great time.

I read this post Quiet Hands today.   Our ABA therapists don’t use those terms.   But it made me think that I need to consider what it is that I am asking R. to do or not to do.  As a parent sometimes it is hard to know when to draw the line.   I’m so grateful that she is starting to tell me in her own way when I’m being controlling.

I accept autism, and I have expectations

I’ve been thinking about what acceptance really means to me.

I have posted about acceptance before:
Giving up on greener grass
On acceptance
A letter to NT parents

I accept that my daughter has an autism spectrum disorder.  She will be impacted by autism her entire life.

What does it really mean to me to accept my daughter’s autism?
It means that I love her unconditionally.
It means that I don’t believe she will be cured or recovered.    (Not to be confused with progress.  I do believe she will progress)

Just because I accept autism, does not mean that I have given up on having expectations for my daughter.

As part of a parent training I took with a local support organization we heard a panel of speakers talk about various aspects of disability and discrimination.  Joana Fraguli said to us that every single one of our children, regardless of disability could go to college.

At first I kind of laughed to myself.  It is hard to think about college when a trip to the library is still unpredictable.   But then I realized that Joanna is correct.   College is not a topic I’m going to dwell on right now, but having autism doesn’t rule that out.

R. has a significant language delay that is part of her autism.   I accept that communication is a challenge for her.  Of course I hope that she will communicate more and more as she gets older.   I expect her to communicate at the best of her abilities (which are changing).  I expect that I and anyone working with her will prompt her to do so.

R. has some sensory seeking behaviors that are part of her autism.  I accept that she needs the input from whatever activity she is seeking.   But I expect her to choose activities that are safe and reasonably appropriate.    If she does not, I will redirect her.  When I catch her chewing on her sleeves or a paper towel roll, I’ll provide her with something to chew – food or a chewy tube.   When she wants to jump on the couch which is dangerously close to the window I’ll redirect her to her trampoline or even a bed.

What about acceptance in the community?

Again, I think it comes down to expectations.   At first glance, R. does not have an obvious disability.  The general public expects her to act like all the other four year olds.

I accept her challenges, and I provide her with the supports she needs to go out in public – taking her security items, sitting in the stroller if she wants.   When she puts her fingers in her ears I just ignore it (as long as she is happy) I don’t draw attention to it.

I expect the general public to leave her the heck alone when it comes to these things.  As long as she is not harming anyone, we have every right to go to public places, even if we look a little odd.   I expect that when people in the general population have more experiences with people who present differently that they will come to some degree of acceptance.

There was a lady in the elevator at Safeway and she was totally distraught that R. had her fingers in her ears.  This lady acted like R. had sprouted antlers.  Maybe the next time that lady sees a child with fingers in their ears she will not be so shocked.

I expect R. to behave when we go out.  That means I expect she will not cry and scream, throw things or deliberately misbehave.   If we go to a restaurant (so rare) or a party or something and R. is unhappy, we will leave.    But we will try again.

I think that the general public does not really understand autism, and it is only through personal experience that people can come to some level of acceptance of people with disabilities or even people who are different.

R.’s teacher told me about a few general ed elementary girls who walked by the class and asked if there were students with autism.  The teacher said yes and the girls said aww that is so sad.   The teacher actually got angry and said, it is not sad, these kids are not sad or unhappy.  Look at them, they are all having fun!

Personally I think it is kind of sad that these girls are so unaware of other students at their school.   But that is probably a whole different topic.

We went to the playground and there was a boy probably 8 or older there with his Mom and baby brother.  He seemed very bored, talking to all of us looking for attention.  He was playing with a remote control vehicle, and it got R.’s attention.  She said wow and gave him the sense she was interested so he started performing for her.   She followed him around for a while, and when she stopped he actually came back to her with the vehicle trying to get her attention.

He did not even acknowledge her lack of language. He was not phased when she ignored his attempt to hand her the controls.  What an incredibly accepting kid!  How did he get that way?  Of course I could not ask his mother.    But meeting that boy gives me great hope.

I accept autism, and I genuinely hope that the rest of the world will come to do so also.  But I think that the general public has to learn to expect autism, before they will be able to accept it.

Please turn down the volume

Chipotle is my favorite fast food.  I guess it is not really fast food, but it is quick and I don’t have to cook.

R. only likes the chips.  But she really likes them and would be happy to sit for a long time if the music were not so loud.  I also have this fantasy of her eating beans or rice or even cheese.

I wrote an email to Chipotle and told them how much I liked their food, but that the music is too loud for my daughter with autism.  I suggested that they have a sensory friendly night once a month like AMC and turn down the music.

I received this reply:

Thanks for taking the time to write to us. I am sorry that the music is too loud for you and your daughter at our restaurants. Our music is supposed to be part of our dining atmosphere and should never be overpowering to the point where someone, like your daughter, cannot eat in our restaurant. The music levels should be adjusted based on the time of day and the amount of people in the restaurant and should merely be a fixture in the background for your enjoyment, and I apologize that it is too loud. I will pass your suggestion along to our team to see if they can accommodate your request for a “sensory friendly” time in which your daughter could eat at our restaurant without worrying about the music being too loud.


Sincerely,

Austin

Austin Roberts | Customer Service
Chipotle Mexican Grill

If you want to write to Mr. Roberts directly, his email address is troberts@chipotle.com.

Next up – I’m going to write to Trader Joe’s.  R. starts to block her ears in the parking lot the music is so loud at one of them.

The zoo gets better all the time

First trip to the zoo

We’ve been taking R. to the zoo since she was a baby.  Last year we decided to get a membership because she finally seemed to notice the animals.

We try to switch up our route, so she does not get too fixated on any one thing.  For the longest time she only wanted to get out of the stroller at the bear exhibit.

Gradually over  the past few months she is getting out of the stroller at different places.  Which is great, but she always has to carry Elmo, Ernie and her water cup.  It could be worse, but it is still cumbersome.

We  were never able to take her into the petting zoo area because she did not want to get out of the stroller, and if she did she had too much stuff.   So I really talked it up one day, and told her only Elmo could go see the goats, Ernie and the cup had to wait in the stroller.  It actually worked, and she loved seeing the animals up close.  Now it is a regular part of our visit.

She likes to ride on the carousel. She sits on my lap on the bench so maybe that doesn’t really count, but she seems to enjoy herself.   She also has recently developed a love for the train.  I’ve started a rule that only Elmo goes on the rides.    Anytime she wants to get out of the stroller, I also insist Ernie and the cup wait for her.

She has been getting out more and more, she will reach out and hand me Ernie and the cup, and I have to be quick so she doesn’t run off somewhere.   She is pretty good about looking for me, but it still makes me nervous.

The last time we went to the zoo she jumped out and ran for the train yelling train, train.     I think we’ll have to avoid walking by it if I don’t want to take her for a train ride.

A letter to NT Parents

I wrote this about a year ago.  I didn’t post it here before because I thought it sounded more crabby than I intended.   For autism awareness month I dusted it off, and posted it to the Mom list that inspired it.

Dear Parents

My four year old daughter has autism.  Maybe you know us.  Even if you never meet us, considering the number of people with autism is currently 1 in 110, you will meet people with autism in your lifetime.

A while ago someone on a Mom list was concerned their child had autism.   I was kind of shocked by some of the responses.  Autism is all the rage now. Really?  Do you think it is trendy and fun to have a child who does not speak?   Is it cool to know my child may never live independently?   Do you think all the children who are being diagnosed are undeserving of the services to help them?

Someone else said  Your child doesn’t have autism – he’s great! I get that you probably do think a child with autism is quite awful.   But I feel the need to tell you that I think my child is great.  Better than great actually, but I’ll spare you my gushing.

My daughter is a person, she has likes and dislikes and she also has real challenges with communication.   Sometimes she is overwhelmed by sounds and sights around her.  I do my best to keep her away from stressful situations, but I do feel like it is important for her to be able to go out into the community.   If she screams or has a meltdown I will leave with her.  But every once in a while I really need to buy milk or something that can’t wait .   Yes I know she is loud.  Please have a little patience.

You may tell me that only babies have tantrums like my daughter, and if I would just discipline her she would behave.   I don’t expect you to understand that she has had years of behavior therapy.   But I hope that you can understand that part of having autism is immature development.   In many ways, she is like a baby or a toddler in terms of her ability to communicate.

Please don’t get in my daughter’s face while she is in the stroller and tell her she is too big and too old to be in a stroller.   Not that it matters, but she’s not seven like you think.   I’m sorry your world-view is so narrow that the sight of a large child in a stroller offends you.  But it is not my problem, please deal with it on your own time.

I’m going to take my daughter to the playground, and she is not going to act like your children.   When my daughter sees your son playing with a bouncy ball, she wants to play with the ball and with him, but she doesn’t know how to ask.  She will take the ball from him as her way of asking.  I’ll be right there with her, and I’ll tell her the ball is not hers, and I’ll make her throw or roll the ball back to your son.   I’ll admit it must look strange to you, that my child can’t do something so simple as say play with me, and that I have to be so involved with her.  In my fantasies (which occasionally come true) your son would play with my daughter.  Just pass the ball back and forth a few times.  It is a public playground after all.  It is your son’s choice, and if he doesn’t want to play with my daughter, that is fine.     But please don’t give us dirty looks, drag him and your other children away, and tell them they have to stay on the opposite side of the playground from us.   You are teaching your child that it is okay to be rude to people who are different and also that they should be ignored.

My daughter enjoys watching your daughter and her friends climbing on the equipment and hanging upside down.  She also likes it when your son brings his remote control helicopter to the playground to fly.  I know she looks a little strange, her body quivers with excitement and sometimes she’ll jump up and down clapping and and saying yay.   The kids don’t mind the attention, and I keep her safely out of harms way.   Please just let her watch.

I’m not looking for pity or sympathy.  But I do hope for a little patience and understanding.   You will meet people with autism, they will be your child’s classmates and your neighbors.  Autism is not contagious, in fact studies are showing that typically developing children actually benefit from exposure to children with special needs.   I’ve seen this first hand.  It’s never to early to teach tolerance, and that is a gift that will continue to give through a person’s life.

Here comes spring break

Spring Break has an extra day tacked on as a furlough day, so it started on Friday  The school department is trying to save money.   School actually ends for the year before Memorial Day, so it seems like we are getting into the last stretch before the dreaded summer.

I’m still waiting to hear about ESY.   I’m fairly certain it will not be at R’s regular school.   Which worries me a bit, but if they can finally finish the construction over the summer it will be worth it.

R.has been saying more spontaneously.   When I would normally prompt her with a word, I can wait and give her an expectant look and she is saying a word more often.  The word I prompt the most is come.  I make her say it every time she hand leads me.  She is starting to say something as she pulls my hand some of the time.  But with E. she’s doing it almost all the time.  A couple weeks ago she was saying what sounded like Da cuh then last week it sounded like Duddy come, and now it is really Daddy come.  She’s also saying Daddy no.

She is labeling things, which is new.  I mean just naming an object she sees, not saying the word because she wants it.  She has really only labeled numbers, labels and shapes before this.  Mostly she is labeling animals and food.

R. has also developed some separation anxiety or something like it.  She has to know where I am at all times.  I don’t think she cared too much before.  Especially when we go out, she is constantly looking for me.  E. will be pushing her in the shopping cart and she will be craning her neck trying to see where I am.   I remember during our assessment with the ABA provider for early intervention, the program director told me that R. should be referencing me (looking for me) constantly.    Of course she wasn’t.

Someone always leaves the gate open at the playground, and I usually spend most of my time trying to beat R. to the gate so I can close it.  A useful side effect of this constant looking for me, is that she is not running away at the playground.  She runs off and she comes back, especially if I don’t follow her.   She also used to run right for kids on the swings.  I think she really wants to know what it would feel like to be smacked by someone on swinging.   Lately she’s actually been just watching the kids on the swing, and I’ve seen her stop short so she doesn’t get run over by a kid on a scooter, or kids just running around.    It’s like I could actually sit down at the playground, if she would let me.