Sunday, May 29, 2011

Memory Monday 5/30

I'm a co-host for the blog hop, Memory Mondays!
Here, you are invited to share a favorite memory. Simply create a new blog post about the memory and leave us a link, telling us where to go. This can be a favorite story, favorite picture, favorite home  video... you name it.  Nothing specific, you tell us what means a lot to you!



Here is my memory:

The memory this week is Rogers 24 hour EEG.

The couch mom got to sleep on. Looks comfortable don't it.

Getting all wired up for his EEG
This is what they call the happy hat at the hospital to cover the wires.
So there is my memory,  now time to link up!




The weekly host is ME!

Please be sure to follow the hosts! Both Kelsi at Modern Mom, Redefined, and I will go through to follow you back. If you would like to be a guest, let Kelsi know. Also, don't forget to let the host know that you are following them and how. This allows us to be able to return the favor! 

As this hop is new, it would be greatly appreciated if you post the button somewhere others can see it on your blog and, if you have a blog hop directory, adding this hop to the Monday section would help tremendously.  Thanks a bunch!!


I hope you have a fantastic week, and link up again next Monday at Modern Mom, Redefined!!!




Friday, May 27, 2011

long day

Yesterday was a long day.  First IEP meeting those are always fun. Only had to yell once. Please do not tell me everything is a team decision blah blah blah repeatedly I eventually will go off.  It went something like excuse me I am a member of this team and what I have to say should be looked into. This is my child and I know him better than anyone in this room. That stopped the stupid this is a team decision crap. Hey its not the best IEP but it works. If you have ever sat through an IEP meeting you know afterwards you are done. Lets just say I didn't have to picked up from the police station good right?
A couple of days ago we started having trouble with the internet so I called the cable company and they sent someone out.  Well I forgot he was comming last night oopppss at least we were home.
What started as a bad cable modem needing replaced turned into the whole house being rewired.  Of course while the TV is going in and out while the rewiring is being done there has to be something on that Roger just must watch now.  Had he shown up while kids were in school it just would have been the modem.  Lucky for me new netflix movies had come in so I could distract with the DVD player instead.
But now everything is fixed and my internet is up and running a lot faster than it ever has. Thanks cable guy.

Wednesday, May 25, 2011

Lucy

3yrs old. She won the pig nose at the pig races at the pumpkin patch.


I guess I should give you some background on Lucy. She is 6 going on 7. She also did not talk until she was almost 5. Thanks to a really good school district and head start they got speech involved at age 3 and got her talking.  She did see a developmental pediatrician when she was in kindergarten (she talked by then just not much) who just said oh she just lets her brother talk for her, she will talk when she feels like it. Her pediatrician had sent us there because he though she might be dyslexic. The developmental ped really didn't address that or much of anything. Only thing she said was ahh she's probably borderline autism (many of the traits present then are no longer). In other words she has some autistic traits but not enough for a dx. Then again if you look hard enough we probably all have traits.
Fast forward to the end of first grade. There's something not right with her. She has friends, she does well in school but she doesn't seem to get whats going on around her all the time. Is this normal? I thought it was just me until the other night hubby said somethings not right with her. The school hasn't said anything they thought dyslexic in kindergarten but we just rode it out a bit and that has worked itself out, she has no signs of it now.
I'm trying to decided now do I make the appointment and take her in to have her tested or do we just see how things go?
bubble girl

age 6 being silly wearing a duck costume

Tuesday, May 24, 2011

Appointment Fun

Hey I call it fun when I make 4 appointments at once. First I had to make Roger's follow up in cardiology (they want to watch that extra vein in his heart) that's once a year. At least the hospital knew who I had seen before I have long since forgotten that was a year and about a hundred doctors ago. That one was easy.
Then I move on to neurology, that was really easy he's established and I knew what month I even got options for appointments here.
Now we move on to audiology. I guess he needs a hearing test of some sort something to do with auditory processing. Anyways that was a transfer and transfer again on the third transfer they finally said why do they keep sending you to me? I don't know I just thought y'all liked the transfer button.

After audiology I moved on to occupational therapy. The multiple transfers from audiology was nothing compared to OT I was transferred between the same two clinics no fewer than 9 times prob more, finally someone that can set an appt comes on and guess what I need a referral. This would have been nice to know oh I don't know 20 min ago before you transfered me all over the state.
So now I have to make an apt with our primary to get an OT order just to be put on a 6 month ot wait list. yippee.
yep that's what i look like after all them phone calls.

see that was fun wasn't it.

Monday, May 23, 2011

Monday Minute

Monday Minute



1 - Think back as far as you can, what's the first tape, record, etc you remember listening to?
They were church tapes. I can't remember what they were called but one of the characters was salty the singing songbook.

2 - What's the first concert you've ever been to, the year and who performed?
I think it was 94 went to Face to face, rancid, and there were other bands there too but I can't remember who now.

3 - Ever bleed from your ass?
no

4 - If you went to your Senior Prom and had a date, do you still speak to said person?
   never went to SP. I had left school before then.

and finally...

5 - Name the one television show that's no longer on the air that could have gone on forever.
x-files, 

Memory Monday 5/23

Roger's pinewood derby car. He took 1st place in his den that year. He used a leggo guy as his driver.

Saturday, May 21, 2011

Sample IEP Goals that address Executive Functioning

I got this from Rogers neuropsychologist: (I'm not sure who the original author is to give proper credit)

General best practice principles when writing executive function IEP goals
• The purpose of the goals should be to teach the child to automatically use self -regulatory routines and scripts (or habits) that increase independent, flexible, goal-oriented problem-solving.
• Executive function goals cannot be successfully met unless they are introduced with a lot of individualized structuring, cueing, and reinforcement. Simply showing a child with executive dysfunction how to fill out an agenda book will not enable that child to do so independently on a regular basis. Intensive practice with an adult, followed by the implementation of key cues, such as a written checklist and the slow fading of direct adult support as the child becomes more independent is required.
• It is essential to establish the necessary external environmental pre-conditions that facilitate and promote the child’s developing and making automatic (if possible) self-regulatory routines and scripts.
• Because executive dysfunction affects all aspects of school performance, IEP goals should link directly to all key academic content areas (reading, writing, math, science, etc.) as well as to communication and social-emotional performance.
• Use the sample IEP goals below as starting points or models for specific IEP goals that address your child’s needs and situation.


1. Flexible Problem Solving: (1) Given training in and visual reminders of, self regulatory scripts (such as “big deal/little deal”, “choice/no choice”, (“plan A/{plan B” and “handling the unexpected”) child’s name will manage unexpected events and violations of routine without disrupting classroom activities. (2) With fading adult supports, child’s name will use a structured recipe or routine for generating new ideas, or brainstorming to respond successfully to open ended assignments. (3) When faced with changes and/or transitions in activities or environments, child’s name will initiate the new activity after only two (one, three) reminders (or within 2, 4, 5 minutes). (4) Given concrete training, visual supports and fading adult cuing, child’s name will appropriately label flexible and stuck behaviors in himself. (5) Given training and practice with the concept of compromise, and in the presence of visual supports, child’s name will accept and generate compromise solutions to conflicts when working cooperatively with others.

2. Goal Setting: (1) Child’s name will participate with teachers and therapists in setting instructional and therapy goals (e.g., "I want to be able to read this book; hit a baseball across the gym; write my name so mom can read it;” etc.) (2) Given explicit instruction, visual reminders, and fading adult support, child’s name will successfully distinguish target goals (doing well in school, making a friend, learning to read, graduating from school) from interfering goals (playing video games instead of doing homework).


3. Planning: (1) Given a routine (e.g., complete sheet of math problems, ask a friend to play a game), Child’s name will indicate what steps or items are needed and the order of the events. (2) Child’s name will learn a general self regulatory script (eg Goal-Plan-Do-Check) for carrying out any multiple step task (completing homework, writing an essay, doing a science project) and, given practice, visual cues and fading adult supports, will apply the script independently to new situations. (3) Given a selection of 3 activities for a therapy or instructional session, Child’s name will indicate their order, create a plan on paper (e.g., with photographs), and stick to the plan. (3) Given a task that he correctly identifies as difficult for him, Child’s name will create a plan for accomplishing the task. (4) Having failed to achieve a predicted grade on a test, Child’s name will create a plan for improving performance for the next test.

4. Organizing: (1) Given adult support and visual cues, Child’s name will create a system for organizing personal items in his cubby. (2) To tell an organized story, Child’s name will place photographs in order and then narrate the sequence of events. (3) Given visual cues and fading adult support, Child’s name will select and use a system to organize his assignments and other school work. (4) Given a complex task, Child’s name will organize the task on paper, including the materials needed, the steps to accomplish the task, and a time frame. (4) Using learned strategies and given fading adult support, Child’s name will prepare an organized outline before proceeding with writing projects.

5. Self-Monitoring, Self-Evaluating: (1) Given training in a self regulatory routine, such as Goal-Plan-Do-Check, and visual cues and fading adult supports, child’s name will accurately predict how effectively he will accomplish a task. For example, he will accurately predict whether or not he will be able to complete a task; predict how many (of something) he can finish; predict his grade on tests; predict how many problems he will be able to complete in a specific time period; etc. (2) Given a specific work checking routine, child’s name will identify errors in his work without teacher assistance. (3) Child’s name's rating of his performance on a 10-point scale will be within one point of the teacher's rating.

6. Self-Awareness/Self Advocacy: (1) Given a specific routine for monitoring task success, such as Goal-Plan-Do-Check, Child’s name will accurately identify tasks that are easy/difficult for him. (2) Given a difficult task, Child’s name will (verbally or nonverbally) indicate that it is difficult. (3) Child’s name will explain why some tasks are easy/difficult for him (4) Child’s name will request help when tasks are difficult. (5) Child’s name will offer help to others when he is more capable than the other child.

Thursday, May 19, 2011

Cleaning Rooms

One of the fun things with Roger is cleaning his room. The place looks like a bomb hit it on a daily basis. Some of this has to do with he is a kid, I probably don't get on him as much as I should about it, and the executive functioning disorder plays a big part as well.
He has no organization at all, not at home, not with homework, and not at school. He just does not get it. One example is his room. He will walk in and not know where to start so he just doesn't do it. If it gets clean like it should I either have to do it myself or stand there and watch and give directions step by step. We have gotten to the point if I can at least see a good portion of the floor, walk through the room, not see trash, and the clothes are put away fine. (we also have 3 boys in one room so that's a lot of stuff.) On the other side Lucy is insane about where things go in her room, she can tell if you move something.
Another is homework. He will do his homework (if he doesn't leave it at school) put it in his backpack but by the time he gets to school he doesn't know where it is. Usually it is found on the bottom of his backpack all crumpled up. Folders do not help. In the past the only thing that helps is for him to type his homework or at least what he can and email it to the teacher, this works for stuff like spelling sentences and stuff but usually doesn't work for worksheets.
All of his teachers throughout the years have said he has no organization at all. He can't find pencils, paper you name it. In 1st grade a bag of blueberries got pushed to the front of his desk, they were found at the end of the year. yes gross. His stuff is in his desk on his desk under his desk. Should be interesting what his locker will look like.
No matter what we have tried we can't seem to get any organization to kick in. And him trying to organize anything stresses him out to where he is overwhelmed. We have at least gotten the leggos in a box and the books for the most part stay in one area of the room.

Monday, May 16, 2011

Memory Monday 5/16

As Roger starts wrapping up 6th grade. Middle school next year this was his Kindergarten graduation. He went to a private school back then which explains the priest.


video
 Music is Brooks and Dunn I believe.
Sorry about the repost I'm trying to fix the sound, blogger doesn't seem to be uploading right. :)

Friday, May 13, 2011

Porkchop

Porkchop is 4 years old and I swear the boy spins in circles when he uses the bathroom. I don't even know how he does it. Anyways one day he decied he had to go to the bathroom except he didn't go to the bathroom he just stood up and went in the backyard. I caught him pants down peeing on a tree. This was our conversation over this:

me: what are you doing?
Porkchop: i had to use the bathroom.
Me: umm thats a tree
Porkchop: I kno That! (if you knew his voice when he says this you would be laughing now.)
Me: We have a bathroom
Porkchop: the tree was closer.

hmmmm......

Fun at The Dentist

OK so taking Roger to the dentist in for a cleaning is bad enough, try having to get fillings. In the past they just took him to the hospital and sedated him. This time we found a really good pediatric dentist, first off he was the first to take my insurance that didn't have a 6 month wait second he had a same day appointment for three kids. He did the initial exam and saw the anxiety Roger had and asked how we had done dental work in the past, you have to remember we moved from out of state. He had only needed it once before and there was a lot to be done so that's where the sedation came in. He thought we could do the small fillings without total sedation. The plan was for us to come in he would give Roger a mild sedative to help with the anxiety, wait an hour, use some laughing gas and do the work. Guess what it worked. The only down side was the medication made Roger obsess a little more for the rest of the day. But we were able to have the fillings done in one session without a lot of drama or anxiety for him. Next week Lucy goes in for hers and it will be the same process, she has a lot of anxiety to when it comes to the dentist.

Tuesday, May 10, 2011

Tuesday's gone Blog Hop

Ok so we are supposed to pull an old blog post and re post. If you wanna join the button is towards the bottom of this blog just click on it.  This was actually my very first post on this blog.

the long journey for answers

Growing up we didn't notice anything different with Roger. Sure he had some strange interests and seemed more interested than others but hey that's just him. Maybe we just paid a little more attention to his sister because she didn't talk until she was 5. He had his quirks never wanted to be affectionate and I don't think he has every once said I Love You to anybody. He went to the same school from preschool until 5th grade. It was a small private school so many of his friendships just kind of happened no one really had to try. Maybe that covered it up. We really do not know why everyone seemed to miss it for years.
At the start of 5th grade his teacher noticed a few things. He didn't seem to be able to get what he wanted to say out, would be upset by writing, just seemed to be struggling this year. Then we moved in the middle of 5th grade and that's when everything became clearer. When he was put in a new situation he couldn't make friends he didn't know how. Its only this year the middle of 6th grade that he is starting to have friends that occasionally come hang out with him or he will call. But let me back up a little.
Last year in Feb Roger had a melt down in class. No one knew what triggered it but the teacher believed it was a seizure so I was called and that began the line of doctors. Neurologist, cardiologist, MRI's, CT scans, EEG's including a overnight stay at children's. Pretty much we have been in every department of Children's National Hospital Looking for answers. This past Dec we finally made it to the neuroscience department and he was diagnosed with Autism which we all expected for a while but it just wasn't official yet.  At least now we have some answers and have an idea of where to go and how to help him.

Eligibility Day

Today is our eligibility meeting with the school for services, well actually its the 3rd or 4th one. Last year he didn't qualify because they said they did not know what to do so I went and found out. The second meeting they wanted to ignore all the private evals that were done. I guess it's hard to have it pointed out that your speech only did a partial evaluation not a full one so she missed ALOT!! Met with the school psychologist and it sounds as if she is willing to push harder for the IEP not another 504 that they don't follow and really it doesn't do a thing for him. Some of the ideas they came up with at the last meeting months ago we tried but they didn't work but they want to keep trying it. So we are hoping that he is found eligible and can get an IEP at this meeting. If not I guess we go to the school board next. 
I already had school officials tell me social skills are not important, umm ok.

Saturday, May 7, 2011

Guest Post

 Visit my post at An Autism mom believes in Her Child's Dreams

If You want to sumbit your own:
"This year, I'm inviting autism moms to submit a guest blog to be published on this site during the month of May. Here are the details: Autism moms (or the people who love them) are invited to submit a guest blog of up to 1,000 words. These should be personal reflections on motherhood and autism rather than essays on the state of the autism community, public policy, etc. Photos and short author bios are welcome but optional. Be sure you have the rights to any images and can provide a credit and caption. If you are already a blogger, please send me an original piece that is NOT presently on your blog, along with a link to your blog so I can include it in the post."

Email Lisa at autism.guide@about.com.

Thursday, May 5, 2011

Disturbing

This is very disturbing to me:  callous disregard
That link is going to take you to a blog entry about the suspension of a medical doctor in Maryland. This doctor also hold licenses in many other states and is connected to a known autism center. Court docs have the names.  He took advantage of desperate parents and put their children at risk.  Through the blog you can see the actual court papers and the charges against him.
To sum it up he was giving a drug called Lupron to children. This drug is not approved in kids and is mainly a prostate cancer drug. It is also used to chemically castrate sex offenders. It will affect the development of ovaries and testes and is not approved for use in autism.  in 7 of the 9 cases examined the kids had autism, it was always stated that they had early puberty (the only approved use for Lupron in kids) even though none of them did.  One of the doctors statements from the court papers in regard to using Lupron in kids is just chilling "If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone" 
I will let you read the other blog post and court papers yourself.

Wednesday, May 4, 2011

Asbergers Downloaded


This is one of Rogers new books.  He likes that it is set up like a dictionary and explains things like bullying, friends, chat rooms, apologies, alcohol, and family in a easy to read and understand format. you can click here to see an example of the book. It is meant for teenagers but Roger understands what most of it is saying.
The definitions in the book are given by a mother and son.  They each give there own take on what something like "Apology" means. Not only does it describe what it is but says that you should accept and no one will see you as less of a person if you apologize yourself.

Sunday, May 1, 2011

Autism Awareness Month

Autism awareness month is over.  People changed their light bulbs and profile pictures on facebook.  But even though the month has ended lets keep the conversation going.  New families join the autism community every day.  While they navigate the new world they are in lets be respectful and now push our views on them but help where we can.  Lets get the adults with autism front and center. Lets start listening to their stories.  I know they are out there, autism doesn't disappear at age 18.  While we are having the conversation on what works and what doesn't lets talk to the people who have lived it and they know better than anyone.  Most autism shows that were on this month only showed the parents and the most severe cases, we need to show it is a spectrum.  People have warped views of autism.  I don't want people to think everyone with autism is either intellectually challenged or a genius that's just not true. The biggest misconception I hear is that people with autism don't have emotions. Yes they do the thing is they don't always understand their own emotions.  Just because someone cannot read another person does not mean they do not feel.  First and foremost we must remember we are talking about people, people who deserve to be respected and loved for who they are.  The first step to acceptance is awareness and it can't stop just because April is over.