Friday, March 30, 2012

Special Education Parents and Statistics: What You Need to Know

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We all have read on the Internet or in the newspaper articles about a study where a special diet is reported as helpful for ADHD or that taking antidepressants during pregnancy is linked to an increase in reported occurrence of autism in children. How about something as seemingly simple as measuring your child's progress at school? These all contain information relayed as statistics. Statistics are a way of using numbers to convey information in a usable way.

We need to know how to interpret the numbers in the studies to know if they were done using valid methods and if they are done in a way that is reliably measurable.
Firstly we need to know what kind of study it is. Is it a double blind study where the patients and the doctors don't know who is getting a medicine and who is getting a placebo? Is it a review of medical records and if so did the recorders of the records know ahead of time what the experimenters were looking for in the records? Is it a case study?
Next we need to know how big this study was, how many people were tested?  If it is a small number there is a large possibility for error.  Finally, does the conclusion of the researchers show a correlation or causation?

Here is an excellent summary of how to evaluate a medical study: or crud

Aside from medical and psychological studies, we get statistics from our children's school. We get them in the form of report cards, achievement tests and IEP progress reports.
There are few articles online to help you with this; one reliable source is Wrights Law:
This web page includes Educational Decision Making, General Principals of Statistics, Understanding Test Data and a Parent's To-Do List.  Knowing how to interpret the information you are given by school is important to know how to do. It can make a difference in how your child is educated.

There are also basic statistical books like Statistics for Dummies, Statistics Demystified and The Complete Idiot's Guide to Statistics.  The Complete Idiots Guide got the best reviews on Amazon. You might want to start with that one. They are worth checking out to brush up on your understanding of the information you are given by the media and your child's school.

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 What is all comes down to is learning the lingo, understanding what the words mean and what they are saying about the subject in the report you are reading.  Don't be afraid of statistics and numbers, they can be a great ally in trying to get something more for your child in school and out.

Additional resources:

Wednesday, March 28, 2012

Mom's iPad Info Meeting: Part 2

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This is part two of the discussion I had with SensiGirl's teacher and some other moms of the children in her class.  We had a discussion about apps that we found helpful for our kids. Things we liked and things that we would like to see, as well as some apps that had to go to the delete pile.

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Emotion and Feeling apps:

Electric Company: Feel Electric!
 Moody Monster Manor
iTouchLearn Feelings

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Music apps:

My First Songs

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Story book apps:

MeeGenius books, this library platform is free, the books cost  99 cents to $ 2.99!-kids-books

Ibooks: One of the moms liked this app. The reviews since the last update aren't so good. Hopefully the bugs have been worked out.

Our local library has a device resource center to download books for free, I haven't tried it yet:

My stories ,create your own social story or story book

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Telling Time apps:

Interactive Telling Time

Telling Time Free

Monkey Time

Visual Timer, it costs less than the Time Timer app

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Other favorites:

Red Fish/ Poisson Rouge:
moderately expensive app, $9.99, test it for free online, press play to try it ( middle left above the red fish.)

Puppet Pals, (Director's Pass 2.99)

My Play Home - Dollhouse app

An app I could live without is the emotions app, Autism Xpress, that only has 12 emotions and uses a kind of emoticon animation with sound. It wasn't very helpful and it turned into a noise maker rather that a learning app.
Twinkle twinkle storybook piano wasn't very helpful either since it only teaches one tune. If your child is not interested in that tune, there won't be much music learning going on.

Again, a special thanks to SensiGirl's teacher and Ms. Liz and Ms. Marjorie for all the great info.

Monday, March 26, 2012

Neighborhood Truce

Now that the weather in our area has warmed, the neighbors are out. Our next door neighbors have children that are a bit younger than Random Guy.  They seem to play well together most times. But sometimes things go wrong.
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It seems since the neighborhood adults know that Random Guy has a bit of a social delay that he is at fault when an incident or disagreement happens between the children. They think he is taking the bullying behavior that has happened at school to him and turning it on their kids. What is really happening is the other kids are picking on Random Guy and then when he reacts badly, they say he was the one who went too far. It has gotten bad enough that the neighbor kids are exagerating and lying to cover up how they goaded Random Guy into reacting to their taunts.

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It doesn't help that Random Guy plays too rough with SensiGirl. I know its normal boy rough housing, but growing up with only one sister I am not used to all that wrestling type play. So I may assume that Random Guy was playing too rough. It also sometimes takes a while to get the whole story from Random Guy, without the added pressure of having to explain himself.

I  know what it feels like to be frightened for you child when another child is threatening.  Random Guy and the Girlie down the street have had it in for each other almost since the get go. Girlie decided that Random Guy was a bad person and has been coloring her interactions with him for years. One day Random Guy was  taking pictures with his new camera. Girlie decided that behavior was spying on her and announced to him she was going to go home and get a knife and come back and get him.  Whoa....that really was crossing the line for me. I kinda freaked. I sat outside with Random Guy and when Girlie came by I told her that the next time she threatens to harm my Random Guy with a weapon I will be calling her mother and then the police. Girlie's mom and I talked the next day, we worked it out for now.  So I get it about a parent hearing someone was hit in the face, well those alarms go off in our heads to protect our kids. When I was approached before I could get Random Guys side of the story, I told our next door neighbors that we shouldn't have the boys playing together when NeighborBoy has guests.
We all need to take time to get the whole story, and I am still working on that skill. Random Guy explained how he was taunted and pushed and he pushed back in defence but didn't hit anyone in the face. Let's also not always assume it is the different kid on the block who is up to no good.  For now we have a truce.

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Friday, March 23, 2012

The Mom's iPad Info Meeting: Part One

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Some moms from SensiGirl's class got together with her teacher to help with a grant the teacher was writing to get iPads for her classroom. We had lots of information about apps to share so here is part one of our findings.

For communication apps we had some new information, besides Proloquo2Go there are two more apps, they are all expensive, so choose carefully:


Sono Flex


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We also discussed social stories and came to the conclusion that you really need to make your own stories for some situations. Here are the apps:


Potty Training Social Story

Model Me Going Places

First Then Visual Schedule, great for making a social story yourself

Pictello, also good for building social stories

My Stories, I haven't tested this one:

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Language and Sequencing apps:

Sequencing with Milo

Cookie, Cake and Candy Doodle, they all have recipes to follow in a sequence

Speech with Milo: Verbs

Question Builder

Sentence Builder: This one is more difficult

Language Builder:

There are a few more "Builder" apps, I haven't checked them all yet.

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Math and Money apps:
Coin Math

Make Change

Jungle Coins

AWEsum! Like Tetris with numbers!

Monkey Math School Sunshine

Park Math

Motion Math: Hungry Fish

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AppShopper has a price drop button to check periodically as well as all things apps.

We agreed that Talking Ben and Talking Tom are not good apps for our children with language learning delays. We had to delete those apps. Our children just ended up screaming at it to hear themselves scream.

A special thanks to SensiGirl's teacher and Ms. Liz and Ms. Marjorie for all the great info.

Wednesday, March 21, 2012

My Daughter Ate Cinderella

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Sometimes when I hear my friends talk about their children's social lives I feel sad. I know there have been times when I have listened to children my SensiGirl's age or younger chatting and have grieved for the chatty Kathy I thought I would have. I know other special ed. parents have grieved for the simplicity of having a typical child. But is it really that simple?

I don't grieve for the girl SensiGirl won't be: the mean girl, a popular girl, a queen bee.  I don't have to worry, her being the kind of girl I have read about in "Cinderella Ate My Daughter." (Actually, with SensiGirl's oral sensory stuff, she ended up eating Cinderella.) I don't see how she could possibly be one of the girls in "Aggression Among Female Adolescents."  When I hear them talking on the radio about the latest peek into girls' social lives, I am relieved that SensiGirl is the way she is.  To be quiet honest, I don't see SensiGirl caring about social kinds of things any time in the near future. She doesn't even try to fit in, and looking back on my childhood, maybe that is a better way to be.  I was miserable trying to fit in until I realized I just couldn't and stopped trying in high school. Contrary to what is being taught to teachers, social ability in school is not an accurate predictor of adult success and happiness.

My daughter still shows love and affection for the people important to her in her life. She is aware and connected to us. She just doesn't really care about the social stuff with other kids or at school.  She has her art, music and a family that loves her. I think she is comfortable with that for now.
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Now, Random Guy cares more about being liked, but not enough to play rough with the other boys just to fit in. He would rather find like minded kids and hang out with them instead of roughing it up with the "in" crowd.  He is aware of popularity more now that he has read the Wimpy Kid books. He tried to keep up with the more "social" boys last year and all they did was give him grief. So even though I think he wishes to be a bit more popular, he doesn't care enough to move out of his comfort zone. I have told him many times it isn't how many kids like you; it is how well you are liked. We talk about how a real friend acts and check to see if he and his buddies are behaving that way.
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I am getting glimpses of what they are going to be like when they are adults. I can see Random Guy grown up and having a family, I can see SensiGirl going to college and pursuing her art or music, but as far as grieving the children I thought they were going to be... it only hurts a little, and not very often.

A special thanks to for making me think about my grief and how I really feel about it.

Monday, March 19, 2012

Girls' Club

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I am thankful for SensiGirl's autism program at her school.  The teachers there really do get it about these kids.  I was wonderfully surprised by how well they get it when I arrived one Monday last fall. I was picking up SensiGirl for speech therapy and was told she was with the Girls' Club across the hall. I open up the door to see all the girls from the program having a tea party and making necklaces from fruit loops.  They were all chatting and the older girls were anxious to tell me things about SensiGirl.  Apparently, there are only about eight girls in the whole K-6 program and it was decided to give them a little extra social girls time together once a week The girls seem to really love it. It was a nice little extra I didn't know about when I had her placed at her school.

As I am finding out there are a lot of little extra things all her teachers do for the kids. As the kids grow and change, the teachers are chasing their moving targets to get the most out of school for the students. So even though I cried last spring when I was told that SensiGirl was to go to a federal setting 3 placement, (apart from regular education classroom more than 60% of the time,) it really has turned out to be the right place for SensiGirl to start school.  She has to security of the small class (11 kids,) and a room set up for kids with sensory issues. She goes into the regular education kindergarten class for writing skills. Since she loves to write and draw, it's a great way to get her used to the regular education classroom.

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So even though SensiGirl doesn't seem to care much about social stuff right now, she is still learning how to play with other girls, seeing other girls doing girl things and knowing what that is like.  When she does care, she will have had some help finding and keeping friends. How cool is that? It is nice to see how the other girls look out for my SensiGirl instead of tearing her down as I hear they do in regular education settings.   I am thankful for Girls' Club and the Speech and OT teachers who came up with a really excellent idea.

Friday, March 16, 2012

Sensory Saturday: Our Latest

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These weird looking things are head massagers. They are kind of fun. It feels better if you do it to yourself than to have someone use it on you.  SensiGirl keeps it on her desk and uses it when she is reading. This is the latest we have tried in sensory gagets and tool. We also tried at the same time this:
The brush massager has turned into a noisemaker and a toy.  SensiGirl doesn't like it when I try to use it on her at home, so I let that one go.  It will probably be donated to the Occupational Therapists' office, she lets them use it with her there. I know that you can get just the all white brush attachment part from the dollar store as well as lots of other sensory toys.  It seems to me that the occupational therapist at school go shopping for supplies at the dollar store quite a bit.
Another thing to pick up at the dollar store is shaving cream. She gets to get all slimy and then smells clean afterwards too! This one is always a favorite of  my SensiGirl:
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Thursday, March 15, 2012

Sleepless - The Tide Is Out

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I think we can all agree that once you have children you almost never get enough sleep. Either they keep you up by being up themselves or keep you up with worry.  I thought I had a good handle on things lately, but short me some sleep and the tide goes out and all I can see is all the crap on the beach.

SensiGirl was at the speech therapist yesterday and I made the mistake of asking where SensiGirl stood age wise with the speech skills. I was told she is still at 2 years old. Her sticking point is "Wh" questions. A two year old should be able to answer those questions, SensiGirl doesn't very often. She can answer to "What season is that episode?" when she wants to watch something on Netflix, but she won't answer "wh" questions for the teachers or therapists who assess her. Her therapist did say SensiGirl has made some gains that aren't measurable, such as increased spontaneous speech and her vocabulary are stellar.

Also SensiGirl hasn't been sleeping regularly since she started the latest EASe listening CD. Last night she was having her own party at 4:30. I can't sleep when I hear her do that, so I was up until she fell back asleep at 6:30.  I wonder why she wakes up at night so often, although usually I am not worried because she is happy when she is awake in her room, singing and chatting to herself.

 While I was up listening to her, I was thinking about should we have her see an audiologist, how are we going to pay for therapeutic music therapy, should I  have her see a neurologist and get an EEG to test for seizures.  I know of a couple of kids who have been diagnosed with seizure disorder apart from their autism diagnosis. They seem to be doing much better; they are making great progress with speech and language processing.  I will broach the subject the SensiGirl's doctor the next time we go in, or call for a referral.  I think it is like the allergy tests we did when she kept breaking out in rashes when she was a baby.  We ruled out that it was anything she or I was eating, so we could drop the subject of diets and move on from there. If we get an EEG and it comes back normal, we will proceed as we have been.

There are a million things to worry about with a typical child, and a million and one with a neurodiverse child. I didn't post the other day because the tide was out and I had to just take care of myself and my family that day. Once I get some sleep I am sure that I will be back in the swim of things.
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Monday, March 12, 2012

What I Learned From Our Tutor

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We have learned a lot from our Family Friend Grad Student. I am grateful every time she comes over to work with SensiGirl. She has been an eye opener to me about the current state of teacher education. She was told that she was wasting her time getting two degrees by her advisor. She is getting a degree in Early Childhood Education and one in Special Education. When she visits different educational settings, she is told a different story that makes her believe she is on the right track. She watched a boy come in the other day to Montessori school. She saw how he behaved and asked some questions about how he socializes and started to figure out that the boy might need some extra help. She wouldn't know what that boy needed help with or how to help if she hadn't been training in special education along with her early childhood training.
When I introduce and teach Random Guy's teachers about him each year I wish for one with some experience with autism or at the very least IEP's and special education.  It doesn't happen very often. Either it is the teachers weren't taught or they don't want to learn about special education and what kinds of things they can do to help Random Guy in class.

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I wish all general education teachers received some training in special education, mainstreaming and inclusion I know that teachers have to have continuing education credits to maintain their certification, my question is what are they doing to earn those credits? I am not seeing much in the way of understanding how to teach my child. When I looked at the professional development websites for credits for license renewal I saw very few containing topics that apply towards special education, even though most classrooms contain at least a few students with an IEP or a 504. In a quick check online at the offerings to certification credits in my area, only 10% are offered in the area of inclusion and teaching children with differing abilities. This is not to say that there is no progress in this area, it's just that I am failing to see as much progress as I would like.  I see a young teacher raring to go to work with children like mine and I am sad to see her discouraged by her advisers.  I am glad she is going to be a teacher, the kids need someone like her.
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Friday, March 9, 2012

Our Sensory Science Friday

Family Friend Grad Student was here the other Friday and I was trying to think of more stuff for us to do.  We tried something different, Sensory Science Friday.  We got out the shaving cream, corn starch, and food coloring and started to experiment with it.

Random Guy wanted to get in on the action too. So I set him up
with vinegar and baking soda.

Random Guys experiment and SensiGirls formulations ended up getting put together and this is what we got.

SensiGirl stuck with this project for an hour, which for her is quite the accomplishment.  We were able to keep most of the mess in the baking pans. I found they are better for containing messes than the trays that the used in preschool and ECFE.

Thursday, March 8, 2012

My First Rant: Rethinking All You May Have Heard

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I have found that in the media world of autism, there is a divide. It is divided into the group who want a "cure", and those who understand that most of what is described by the word autism are individual differences. The thing that "caused" my children's autism is being the children of me and my spouse. We are like our children and our children are like us. We are not puzzles to solve and we are not looking for a cure for our differences. We are not "shadows" in the classroom. We are looking for understanding in a world that is intolerant to difference no matter what the broadcast time given to the latest tolerance meme circulating.  We are human beings not chickens, and we are supposed to be above pecking the odd ones to death.

I have spoken of inclusion and neurodiversity. The core of those concepts is understanding and support.
I have heard many pithy quotes about autism, but I think the one that is most apt in our case is "Autism, it's not a processing problem; it's a whole different operating system."  It speaks to the basic differences that we have from the mainstream. The visual thinkers, the ones who are systems based learners, are the ones who make things happen. They can envision and execute the next new thing that will make a difference in our world.  So let's find a way to include those who are differently minded. Give a system based learner an understandable system to learn. (Hint: it's not Everyday Math.) Let's work to find the strengths and build on those rather than testing and retesting to find the supposed weaknesses in our children.
Most of all lets take a chill pill and stop risking our children's health for unscientific rhetoric about the newest "cure" or the supposed risks of vaccines that keep our children alive.  Remember that "Parent Activist" said that her community would line up for measles instead of risking autism? Well, I love my children healthy and alive with a few quirks. This link says it all:

I am tired of funds being wasted on disproving over and over again an unethical "scientist's'" findings. To find out more about that particular issue read "The Panic Virus"

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I am infuriated with shysters taking advantage of others in the special education community who haven't had to the time or experience to vet a treatment or strategy. Even those with a certain amount of savvy can be fooled. I recently read a post from another mom blogger who had to face down a person who was taking advantage of her family. Why do "sensory" brushes cost $4 from a special website, but you can purchase one from the dollar store for 35 cents? If we could share our experiences it would help all the other parents of children who have just received a diagnosis to smooth their way on this unpredictable path.

Take some time and explore a new way of thinking about autism and neurodiversity.

 Let's work together and get some good done in our own communities and make sure our lawmakers are getting it right.