Monday, April 30, 2012

Federal Classroom Settings, Transitions and Mainstreaming

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My SensiGirl is in a Federal Setting 3 classroom. When that placement was brought up at her IEP last year, it made me cry. I felt like it was hopeless for her to get into a regular education classroom eventually. I felt like she was being restricted into a special education box and she wouldn't be able to get out. I had to do some more looking to find out more about what it really meant. This chart spells it out clearly what that means.

Federal Instructional Settings
School Age Students 6 through 21
01  Regular Class - less than 21% in special education classroom/setting
02  Resource or Self-Contained - 21-60% in special education classroom/setting
03  Separate Class - more than 60% in special education classroom/setting
04  Public Separate Day School Facility - more than 50% of day
05  Private Separate Day Facility - more than 50% of day at public expense
06  Public Residential Facility - more than 50% of day
07  Private Residential Facility - more than 50% of day at public expense
08  Hospital or Homebound Placement
Follow the link below for the full complement of settings including for children birth to 5:

Federal settings have to do with how much time is spent in the regular education classroom, not the quality of instruction or if that setting is best for your child. You have to look beyond the label of "Federal Instruction Setting" to understand what it means for your child.

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 It was explained to me that SensiGirl needed a special classroom to get her started out right in grade school. Simply put: if she became overwhelmed with the regular education classroom with 20 kids and all the noise and motion going on, she might not make the transition into elementary school without being traumatized. SensiGirl being like she is with a memory like a steel trap, if things went wrong, we might not get another chance to get it right. A separate classroom with only 10 other students and extra teachers as well as easy access to speech and occupational therapy specialists was what was in order for SensiGirl to get a good start in elementary school. She made the transition to her new school with the minimum possible upset for her, and she is now spending time mainstreamed in the regular ed. classroom during writer's workshop.
This is not to say that we got her in a regular education classroom with no hiccups. We were not very successful in our first attempt to introduce a regular ed. classroom to her. Breakfast and morning meeting was not her thing. She didn't like the transitioning within the classroom and didn't like crowding around the teacher with the other kids on the floor. The teacher tried to make it work, even having SensiGirl sit on her lap, but it didn't work. We had to find things she really liked, which were writing and drawing and introduce her to the classroom doing those things.

From Friends A Primer, (Pennell and Cusack, 1930’s)
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We talked at her IEP last week about how to extend her time in the regular education classroom next year.  The transition into elementary school is a tough one for most special needs kids, making the transition as smooth as possible for them is the key, and then once they are used to their environment, you can start to test the possibilities of expanding their time in other settings.


Wednesday, April 25, 2012

Substantiated: Your Intuition is Right

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I just returned from SensiGirl's IEP meeting. She is doing amazingly well. She is academically on target and behaviorally, and socially improving every day.  Her speech teacher in school is so impressed with her and sings her praises every chance she gets now. A big change from how it was at the beginning of the year. I am reminded of how far we have come in a year. I am grateful to her teachers and specialists for all the hard work they do educating her.
I saw the school district's autism placement specialist earlier this week and remember how hard I worked to get SensiGirl into her present placement. It wasn't easy. I had to write emails, tour schools, interview teachers and then listen to my gut and put my brain into overdrive to figure out how I was going to get SensiGirl what she needed.
It is important that as a parent you listen to your intuition; if you don't feel right about a program, teacher, or placement or classroom, don't dismiss it and think the school district's experts know better. More than likely they don't. You know your child better than any other person they come in contact with, and it is up to you to advocate what is best for them.
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I just knew after touring our nearby school that the special education program there wasn't what I wanted for SensiGirl. There were all kinds of alarms going off inside of me, but I was trying to ignore them, since this would be the simple path. The advisers said this school would be appropriate for SensiGirl and she would be close to home, and in school with the neighborhood kids. I couldn't do it; I couldn't quiet my intuition about the teacher there who was burnt out and needing a break.
Unfortunately Random Guy was not so lucky. I hadn't fully found my voice to advocate for him when he was experiencing a bad teacher. The alarms went off on the first day of second grade when Professor Umbridge failed to direct him (as we discussed) out the correct door at school and I was not waiting outside the one he exited. He panicked, as did I when I realized he was not coming out the correct door. As I frantically looked for him with help from my neighbor, Random Guy ran home and luckily found Grandma waiting for him. The teacher only made excuses and didn't really seem to care, since Random Guy was found safe.

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More failures continued throughout the school year culminating with her blaming him for being bullied and humiliating him in front of his class for not completing an assignment. As much as I tried to work with the school social worker, principal and teacher, they were all failing my child. I decided it could not continue. We moved Random Guy to another school (see here: My Child Did What?) and he is making wonderful progress.
You must follow the link below, read this article and watch the video about what can happen at school. You would do well to listen to your parental alarms and do the hard thing to get the best for your child. FAPE or Free and APpropriate Education has to mean appropriate. Bullying from teachers is never appropriate and teachers who bully should not be allowed to teach, no matter what the union contract says. Break the bully culture in our schools!

Friday, April 20, 2012

Hitting the Limit

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There are times as a special needs mom that I have to take a break. It is hard to keep up the level of energy and optimism required to keep my kids happy and safe and cared for all the time. The last few months the Atomic Punk has been on the road and I have been parenting alone during the week. I do have help from Grandma once a week, but I am pretty much on my own.
The thing is, I also suffer from depression. I am a three time loser in the depression wars. I am on antidepressants for the long term. Even though I take the medicine, my depression will wax and wane according to events in my life, just like anybody's mood would. I don't take enough medication to elevate my depression entirely, just enough so I can function on a daily basis. It is a delicate balance. After Random Guy was born I suffered from postpartum depression, which was my last major episode. I have reduced my antidepressants so I can stay alert enough to care for my kids and keep track of everything.  I have to cut back to the basics for now. The basics includes a clean house (not tidy, clean,) clean clothes, clean kids, food and making it to all the weekly appointments. Stack on allergies, Atomic Punk's work stress (yes, I am his sounding board too,) and SensiGirl having impacted 6 year molars and I just want to give up. It's like living under a wet blanket.

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This week I am hitting a wall. It is too much sometimes to attend an evening meeting every week or so. It is definitely not a good idea to do a Parent Resource Group meeting on Friday, attend my friend's first professional storytelling show Saturday, SensiGirl's IEP meeting on Monday and an Autism Family Resource Group on Tuesday. That is in addition to our regular twice weekly OT sessions and twice weekly speech therapy we squeeze in after school and before dinner and homework, (yes, my kindergartner has homework too.)
There comes a time when you have to pick and choose your priorities, right now it has to be myself. If I go under, the whole family does too. So I sent my regrets to the Parent Resource organizer and my storyteller friend and am just trying to stave off the impending depressive episode. I can't not function at this point. It is a struggle.  Blogging is in that narrow area between taking care of me and giving of myself; so I may be a bit irregular in my posts the next few weeks or so while I get myself sorted out.

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Monday, April 16, 2012

Decisions, Decisions...

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I was at an advisory council meeting the other day, and a parent asked one of the administrators how they would know if their child needed a modified test. The administrator said to talk with the IEP team and maybe use a decision tree for that issue. Well, unless you are schooled in flowcharts, and use them to help you make business decisions, you might not think of a decision tree as your go-to choice making tool. Deciding about a modified test has more guidelines to follow and you need to track data on performance to show a need for a modified test, so I didn't agree with the administrator's suggestion. Decision trees are usually used to predict monetary risks and potential value. Keep in mind the adage: use the right tool for the right job.

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There are other graphic problem solving organizers to choose if a decision tree doesn't quite fit your needs. One way to sort out information and feelings about a decision is to use a T chart as a way of organizing your thoughts, this was a favorite of my Dad's, it's simple and effective with most decisions.
Now there are many ways to graphically organize your thoughts and help you sort out the information in making a decision. Here are  links to thumbnails and printables of several variations of graphic organizers including: Venn Diagram, Fishbone Diagram and something they call a decision making diagram which is a step up from the basic T-chart.
You could also use a balance sheet as Ben Franklin did:

You may also consider a flowchart. Although after looking at the link, you may not.

There is even a flow chart to help you decide if you need a flow chart
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One method I use is the T chart or Pro/Con Sheet.  Usually when I need to make a hard decision I do as my dad taught me and write it out pro and con on a T-chart. So remember, we not only do we have to find a way to make decisions ourselves, but we need to teach our children the art of decision making too. It is fortunate for us that we have so many graphic ways of displaying the options now, so it is easier for visual learners like many of our special needs kids to learn how to use them.
The whole idea of a graphic organizer is to take the information and get it out of your head and organized on a computer or paper. In organizing the information it may show you the answer or that you need more information to make the decision.

Maybe if this individual had learned how to use decision making tools she wouldn't have regretted asking this guy for 56 tattoos on her face.

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Friday, April 13, 2012

Correlation, Causation and "Links"

What does it mean when a medical study shows correlation? Does it show cause and effect? What about causation? What does it mean when the media announces another "link" to autism? What about those confounding variables. There are some words we need to define before we delve any further into the world of statistics, media and hype.

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Causation- The action of causing, as in the relationship of cause to effect, something that produces an effect.  "Even when you change something, you cannot remove the effect without removing the cause."
Correlation- the degree in which two or more measurements on the same group of elements show a tendency to vary together. Just because they vary together you cannot assume causation.
Link- this is not a statistical term, it is used by the media to show a relationship.
Statistically significant - generally, the result would happen by chance less than 5% of the time.
Confounding variable/factor - something that correlates either negatively or positively with the independent and dependant variables.
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What we are looking for in these studies is cause and effect. The recent report about the "link" between obesity and autism is more hype than science. What they found was a correlation between having children with autism and women having diabetes. Women who were overweight were more likely to have metabolic disorders, defined in the study as obesity, diabetes and hypertension. The reports of the study focused on women, obesity and having a child with autism, instead of diabetes. Although diabetes had a correlation that was statistically significant in the findings, the correlation of having a child with autism to hypertension and obesity was not statistically significant, meaning that it did not occur more than it would by chance. Obesity was not cited specifically as a correlative or causative factor. Obesity is generally defined as having a BMI score of over 30. (I did not find out if they used this exact measure.) 
What about regular weight women with diabetes and hypertension? Do they have a higher risk of having children with autism? How do they fit in with these findings? The sample pool was over a thousand children, and still they only found a "loose association," to metabolic disorders, (as the study's writers put it.) This tells us that they are not very confidant with their results or they would have stated it differently.  It does point to an interesting direction for more research, but as it stands it doesn't say much and it is difficult to tell if there is a confounding factor involved.
There are many factors involved a child being diagnosed with autism.  Another report stated recently that older fathers (they defined older as over 35,) had a greater likelihood to have children with autism.  If you look further you see that "greater likelihood" is really a correlation not causation, and that the three small studies involved are again showing possible directions for more research, rather than an answer to the question: Do older fathers have more if a chance of having children with autism?

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We as parent and media consumers need to be savvy to the use of statistics in media reports, especially ones announcing the latest cure or cause for autism, (or the special need your child has.)  Read the reports with a critical eye and keep these definitions in mind.  As I have said, statistics aren't scary, but they can be a powerful tool to either instill confidence or fear.  I hope this post helps make things clearer and less fearful for you.

Resources:'s blog/2012/the-new-genetics-of-autism
Statistics Demystified by Stan Gibilisco
Statistics for Dummies by Deborah J. Rumsey

Wednesday, April 11, 2012

Our Family's Collective Rebellion

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Random Guy hates that he has to do book talks for school. Every month he has to read a different genre of book and do a different project about the book and talk in front of the class about it. This month was poetry. Random Guy hates poetry. I am not so keen on it myself. So I found a bunch of books at the library for boys and kids who don't like poetry. I found this book:


We looked through the poems and Random Guy picked "Joy Sonnet in a Random Universe" by Helen Chasin, it went like this:

Sometimes I'm happy: la la la la la la la
la la la la la la la la la la la la la la la la la
la la la la. Tum tum ti tum. La la la la la
la la la la la la la la la la la la la la la la la.
Hey nonny nonny. La la la la la la la la
la la la la la la la la la la la. Vo do di o do.
Poo poo pi doo. la la la la la la la la la la
la la la la la la la la la la la la la la la la la
la la. Whack a do. La la la la la la la la. Sh-
boom, sh-boom. La la la la la la la la la la
la la la la la la la la la la la la la la la la la
la la. Dum di dum. La la la la la la la la.
la la la la la la la la. Tra la la. Tra la la
la la la la la la la la la la. Yeah yeah yeah.

Memorizing this poem wasn't too hard for Random Guy. It is indeed 14 lines like a sonnet should be, but it is full of random la-la-las and silly musical comments.  Since it technically follows the rules for the assignment, he thinks it's funny that he can use this poem to fulfill the requirement. He recited his poem the other day and got a good grade on his performance. He is very happy with how it turned out. He even says he likes poetry.

SensiGirl was supposed to write on lined paper for her Theraplay teacher, and she didn't like that she was being asked to do something she considered school work at Theraplay.  She started screaming about it, she was told" No screaming." The therapist wrote "Hi, My name is" on the paper and passed it to SensiGirl to fill in, this is what happened next:

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SensiGirl didn't scream, she wrote" AGGGGGGGGGGGGG" instead. So she followed her therapist's request not to scream by writing a scream.

 I was upset with the neighbors attitude about Random Guy when NeighborBoy said Random Guy hit his friend. I contacted the neighbors and asked them to think about their child's role in the incident.  After not hearing anything for days, I was fed up, and I wrote about how Random Guy was hung out to dry. I guess you could say that day we collectively gave the world the finger and then went on with things. I am normally mild mannered, but sometimes it is just enough and I have to rebel. I guess my kids are that way too.

Monday, April 9, 2012

Sensory Apps and More

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Sensory Apps
Here are some more apps for sensory experiences for your kids. I have noted when the app is more expensive than the usual .99 cents to 3.99. I have also noted when they are free. Some of these apps are soothing, some stimulating, but all are good for sensory input and interaction from the iPad.

Magic Pictures HD - Living Pictures
Beautiful interactive landscape and still life pictures with nature sounds

Bringing images and music together. Bloom is a musical composition instrument and art work tool.

Stimulating with fireworks and sound effects. Choose from 15 venues to view your show.

Sound Drop - free
Science, math and sound to create music

Pocket Pond -free
Interact with the fish and water in the pond, nature sound effects

Relaxing Melodies - free
46 ambient sounds helpful for relaxation

Little Lily's Touch Book
A highly rated message story book about a girl with sensory issues.

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Other  helpful apps

Book creator can be used to make social stories
Book creator 4.99

Felt board
You and your child can create characters and make stories using the felt board figures and settings, (without worrying where the felt figures wandered off to.)

Rainbow Sentences 7.99 (only for 4.3 or later version of the iPad, I haven't updated lately, so I couldn't try it.)
Helps kids combine words in the right order to create sentences, if your child is a system based learner, this may help with reading and language acquisition.

Brain Pop - free featured movie,
Explorer subscription 1.99/month for featured movies and quiz, plus 4 related movies and quizzes rotating every day.
Full access subscription 6.99/month, unlimited access to 750 movies and quizzes.
An all around education app with science, engineering and tech, math, social studies, English, health, and art and music.

Visual Schedule Planner 14.99
Fully customizable visual representation of schedules for the day, week, month. Includes a timer and a checklist function.

If you have any apps that really impressed you sensory-wise or found really helpful for you special needs kids, please share so we can all give it a try.

A special thanks to OT with Apps for pocket pond and relaxing melodies
Thanks to Apps for Children with Special Needs for Rainbow Sentences

Friday, April 6, 2012

Social Groups for Teaching Social Skills

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I have said before that my kids are system based learners, so I need to give them systems to learn.  The randomness of some social interactions still puzzles them. Heck, some social interactions puzzle me. With kids on the autism spectrum they need systemic ways of learning social rules and manners.
Let's look at a systemic way of teaching some of these skills, social skills groups.  Random Guy has been in a social skills group at school since kindergarten. SensiGirl has her own social group with the Girls' Club at her school. Lunch buddies or peer mentors at school have been helpful too. Some schools don't have these programs, or your kids are at a developmental stage or of an age where they need more help than a school pull out once a week, and you need to find resources for them in your community.
Our community has several venues for teaching these skills, look for similar groups in your area. The Autism Society of Minnesota has several groups now under the umbrella of the Eagle's Nest, divided by age to teach what it means to be social and instrumental social skills. They start at age 8 and go up to age 19 now. There has been a lack of community social outlet services for that older age group, but I am starting to see that change.  Our neighbors in Highland Park have the inclusive Highland Friendship Club for typical and special education teens ages 14 and up. The Jewish Community Center of the Greater St. Paul Area is very inclusive with programs for children and teens. We also have the City of St. Paul Adaptive Recreation, and Special Olympics Minnesota which teaches confidence and team work, as well as a venue for making friends and getting the kids involved in sports. The sharing of interests can open up opportunities for friendships.

Some parents have pointed out there is a distinct lack of social skills groups for ASD girls.  They have said that the American Girl publication A Smart Girl's Guide to Starting Middle School has been extremely helpful in explaining social situations the occur in school.
You must teach your children what is a friend and not a friend, as bullies will try to make light of aggressive behavior by trying to pass it off as friendship when caught. Random Guy and I have been having lots of discussions about what kind of behavior is that of a friend since he started reading the Wimpy Kid books.  The main character has displayed poor behavior towards his friends on several occasions.  He has blamed his bad behavior on his "best" friend, broken his friends hand and pointedly ignored another classmate and got the other kids to go along with that game. We have talked about how those actions are not those of a true friend.  The fact that the Wimpy Kid is so concerned about popularity also is a teaching tool;  I have told Random Guy that it is not how many kids like you, it's how well you are liked by your friends. If you know a series of books that is in the style of the Wimpy Kids books but shows good friendship behavior, let me know.  I need all the help I can get.

A special thanks to SensiGirl's teachers, Random Guy's school social worker, and Marsha Baer of the Autism Society of MN
resource: Kay Burke, Ph.D., Hierarchy of Social Skills

Wednesday, April 4, 2012

Mixed Messages: Pica

 What would you think if you were a kid with pica?

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 Hmmm, in a food jar, smells like food, says edible...

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Shaped like ice cream cones, but  made of chalk.

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Says oatmeal muffin...looks like soap.

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Looks like cake, smells like food, tastes like soap.

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Looks like a candle smells like honey

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Both of them look like toy ferraris but one smells and tastes of marzipan.

Just some thoughts about how it could be confusing sometimes even if you don't have the urge to eat inedibles.

Monday, April 2, 2012

Autism Acceptance Month Awards


For Autism Awareness Month I am taking some space to recognize the people who are doing so much to make the world aware of autism. But let's not just be aware, let's promote the world having more acceptance of  autism and neurodiversity.  We need all kinds of brains to make this world run well.


 Dana Commandatore -  for an excellent article for American Women Media about Autism and Acceptance.
Let's change the conversation


Todd Drezner - for Loving Lampposts, a movie that explores what it is like to be the parent of a child with autism and what it is like to live and grow up with autism. This great documentary is available on DVD and Netflix


Natalie Davis, Miss Minnesota - for using her platform to talk about autism


Joslyn Gray, a.k.a. Stark Raving Mad Mommy, writer. For having the guts and the humor to write about what its like for moms in general and special needs moms in particular. Her lay-it-bare humorous writing made me want to join the conversation. Her encouragement helped me follow through.

Thanks to ALL the people who promote awareness and acceptance for our family members with special needs.