R. still likes taking pictures and videos of herself and I hope these show her sense of humor.
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.
R. loves memory memory matching games on the ipad. Here’s a short list of her favorites.
Amazing Memory Match has an assortment of memory matching games. The opening screen reminds me of the old speak and say dials. You can choose a picture (different animals, foods, transportation…) and get a game with pastries or dinosaurs. When a match is made the app flashes a picture of the item matched along with the word and speaks the word aloud. I think this is great for vocabulary development. There is a free version available with a limited number of games.
Miss Spider’s Tea Party app has a read aloud story, coloring, puzzles and a memory matching game. She’s had this one for a while now and just gets more and more out of using it.
Timmy’s Kindergarten Adventure isn’t the best educational app. While it does allow you to pick until you choose the right answer, it advances to the next level too quickly. And compared to other apps the graphics are dull. The best part about this app is that you can buy in app toys with coins earned for answering questions correctly. No real money is involved and it is fairly easy to earn enough to buy everything. There is of course a matching game. It has animals and makes the animals sounds. A light bright style toy is fun too.
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.
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.
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.
R. has only been in school for three years and I’ve conveniently lost count of how many IEP meetings we have had. In some ways it is easier, I know what to expect and I’m able to manage the process as much as they let me. But it is always stressful to hash over all my daughter’s challenges and wonder if we are making the correct decisions.
An IEP is a document that is meant to be changed as needed.
It feels like they are creating this master menu of all the potential for my daughter over the year and if I don’t get it right then she’s going to miss out on something crucial. But an IEP can be changed at anytime.
R. has only had two teachers so far, but with each I talked to them about their willingness to make minor changes to the IEP without calling the entire team together for a meeting.
Everything on the IEP should be easy to understand and implement even by someone unfamiliar with my child.
It really helps to read through the IEP at times when I don’t have to. When there’s no major issues or an impending meeting I can be more objective.
The Present Levels of Performance section of the IEP is the first window to R. that a school professional will see. I generally send my own list of strengths, abilities and weaknesses to the teacher prior to the IEP meeting. It is common that R. will show new skills at home before they see them at school and this information should be included in this section. I’ve never had them disagree.
There are many resources for writing IEP goals out there.
Cultivate relationships with the professionals on my child’s IEP team and inform them of my expectations regarding the process.
We have been lucky to have had nothing but good and great team members since R. started with public school.
I have the email addresses for the OT and ST at R.’s school and I communicate with them, asking questions and updating them regarding progress and challenges. I don’t do this too often, but I do feel like I’m getting the information I need from them. And when it comes time for the IEP meeting, I don’t feel like I’m meeting with strangers and they are not surprised by any of my comments or suggestions.
I also communicate with the teacher, again I don’t make a pest of myself but she knows my concerns and what has been working. I’ve always sent an agenda of my concerns, what goals I would like updated or added and any questions. With R.’s current teacher she has been awesome enough to see me for a Pre-IEP meeting. She gives me half an hour and I’ve been good about not going over––yes I have to watch the clock to make sure.
Educate myself and learn when to trust my judgement and instincts.
I’ve realized that I don’t need to have the common core standards committed to memory––and there’s an app for that. There’s actually a mind-boggling amount of information out there like these goal banks:
I speak to other parents and attend trainings when needed. Sometimes the hardest part is knowing when to stop gathering information for a while. Thinking back to Dr. Greenspan’s analogy of development and building a skyscraper I have to be careful not to pick out the drapes before there are any windows to cover.
For over a year now R. will occasionally take my finger and use it to point at something. She seems to be asking what the item is, so I tell her. It was random for a long time, she would do it once every couple of weeks.
A couple of months ago she started asking every day who particular muppets were on one of her favorite Sesame Street videos – A Celebration of Me Grover. Most of the muppets were just generic nameless characters. At about the same time she started to open Safari on the ipad and ask for Elmo. If you search for Elmo in Google and select images there are tons of pics of her favorite red monster.
It didn’t take long before she asked me to look up other Sesame Street characters and it became a new activity-her asking me to search for something and then looking at the pictures.
She’s also started watching some different shows-only on the ipad, but I’ll take it. She came to me with each show-– Backyardigans, Wonderpets–– nearly every single kiddie show and wanted me to name each character and look it up in Google. I prompted her to use her own finger and say Who is it. This has become a favorite activity, so she picked it up quickly.
Now she’ll come up to me all the time, point at the picture and say Who is it. And then I have to look the character up in Google. I’ve learned all kind of names. I now know that Caillou’s mother’s name is Doris. How fascinating that she even wondered about that. She was upset that the boy in the cat in the hat has no name. And I’m amazed that she figured that out, I never even noticed.
She has been very into Sid the Science Kid, and one of his phrases is I have a question. R. repeats this, sometimes out of context but often she’ll walk up to me and say either I have a question or just question. And then she will ask a question!
An example of an exchange:
She walks up to me and says Question.
Me: Oh you have a question? What’s your question?
She tugs on my hand and says Come.
I remove my hand from hers (I’m working on trying to remove her touching me from her communication.) and say OK, I’ll come with you. I follow her to the stairs where she has a bunch of stuffed animals lined up.
She points at one and says Who this?
I say That’s a cow.
She walks away, retrieves the ipad, opens up Safari and points at the Google search window and says That’s a cow.
I search for cow pictures for her to look at.
The teacher suggested that I have her type in her search requests, even hand over hand. Sometimes she’s impatient, but after weeks of doing this it seems like she can spell some of her favorite searches on her own, I’m just sort of holding her arm for moral support.
It started with a small hole in his chest that R. couldn’t resist yanking stuffing through. And then she destroyed the arm.But she doesn’t seem to mind that it is missing. She can still make him clap.
I warned her that his eyes would come off permanently if she kept chewing and pulling. But I don’t think she understood, or maybe she didn’t care. She came to me when the eyes finally lost hold and said eyes over and over again for the next few hours. But she didn’t cry or even whine. And now they are forgotten.
I’ve had a back up Elmo on hand for years now. So when she went to school the next day I hid away eyeless Elmo and took out the new one. She greeted him happily at first. But after a few minutes it dawned on her and she screamed and screamed for Elmo.
I realized at that moment I had to make a choice. I could stand my ground and eventually she would stop crying and either become attached to the new Elmo or not. But I just couldn’t do it. There are so many instances where it is a matter of safety or something and I have to stand my ground. It seemed unfair to deprive her of a beloved comfort item because I think it looks bad. So I gave it back.
So it has been a long time since I updated. I’m not usually superstitious but every time I started to write this post I felt like I might jinx something…
But here we more than half way through the school year and Kindergarten is going very well. The class (self contained special day class) has nine students and five aides.
One of my biggest concerns was R.’s escaping behaviors. I was worried she was going to walk out the front door of the school and try to find her way home. She did escape starting on her first day of school. There are classrooms adjacent to the recess yard and she instantly realized there were toys in each classroom and she wanted to see them. The amazing thing was, the teacher and aides did not freak out about it , no meeting was called, no outside behaviorist was called in. The kindergarteners have three recesses a day, and for the second recess the teacher brought some toys outside. Talk about brilliant. Over the next few weeks the aides worked on showing R. all the fun things she could do on the recess yard and now it is not much of a problem at recess. She still does try to go exploring from her classroom, but they seem to be able to handle this.
Her school day is so much more interesting than in preschool. They go to the library, have pull-outs like music and garden. Even the work they are doing in class from the worksheets to the art projects is more advanced than preschool. The SDC class is mixed grades, K-2, but the kindergarteners do the same things that the general ed kindergarteners do and it seems to stay the same as they advance in grades.
R. is going to one of the general ed kindergarten classes for free play each day. I was getting notes that she was “playing” with the other students. I visited one day, hoping to just spy in the window so I would not distract her. I peered in and I did not see her at all–just groups of kids. So I went in the back door, and there was R–hanging out with the large group of kids. From what I saw she was hanging out more than playing anything. But the general ed teacher told me she puts hats on the other kids, takes turns with marble runs and other toys and that the kids really like her.
And that is one amazing thing about this school, it is not just the teachers who seem to like R., the kids do. I never felt like other kids really noticed R, beyond her differences and she only had limited interest in them. So this is really an amazing surprise.
R. is obsessed with clapping and getting people to clap, and she has a tendency to grab people’s hands to get them to do what she wants. I was concerned about how this would be taken by the other kids, especially at recess and discussed it with the teacher. After a few weeks the teacher said that the kids don’t mind at all when R. has them clap, and some girls were taking R. by the hand and running around and laughing. She told me that there were hula hoops on the recess yard and R. put a hoop on the ground, stood in the middle of it and spun her body around. A bunch of other girls watched and then all did the same thing. So I can say that R. inspired her fellow students to spin!
R. can follow directions so much better. I’m able to have her help with cleaning up her toys and similar tasks. I discussed this with the teacher and she set up a recycling job for R. where R. and a student from the general ed kindergarten class take a box of recycling to the recycling bin outside. The children have to carry the box together, and work together to lift it into the bin. Talk about the most amazing way to work on joint attention skills, social skills and probably more. R. is super motivated to do this, the aide said that she hardly had to help them at all, they worked it out between them.
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.