The Long Time

Waking on Every Moment.
Worrying weather your child made it home.
It takes a long time to know
Nothing is ever certain or set in stone.
Comforting on a seconds notice
Judging the actions.
The long time comes but will go.


This was written by a friend of mine Victor years and years ago inspired by Roger. Visit him here

What Are You Sorry For?

The one thing I cannot get used to is people's reactions when they hear your child has Autism.  The most common I get is but he doesn't look like it. Still don't know what one with autism is supposed to look like, I've decided I'm going to start answering and you don't look like a idiot see how they like that.
The very close second comment is I'm sorry. What the heck are you sorry for. While yes he does struggle with some things this is not a death sentence. Given a magic pill to fix it, really I don't know what I would do and that's not an option so no since in going over that can of worms. Maybe it's because I have had worse options on the table.
This is the child who is not supposed to be here. Let me go back a little and explain, anything and everything that could go wrong in my pregnancy and delivery did. Long story short ended with emergency c-section me in icu and not having a clue what had happened.  Finally the next day a med student asked if I knew what happened when I said no he said to put it bluntly 5 more min and we would have lost him 10 min and you both were gone that's how close you guys came.
So when you say I'm sorry to someone first off your really not second you don't know where they have been.
Even with the struggles he faces.  I'm not sorry. There's nothing to be sorry for. He is a kid and deserves to be treated as one.

one step forward and 2 back

I FINALLY found an OT for Roger.  Insurance will pay yay (happy dance) and the wait list is less than 3 weeks.  Most of you know how amazing that is in itself. The other 3 lists we are on are over 6 months long.  While I finally get this worked out his speech theripist has informed me that she is switching clinics at the end of July and at that point we will be put back on the wait list. They don't know when a replacement will come in for her and what that persons caseload will look like so at the end of July we will be back at the end of an insanly long wait list.
I do believe the place that will be doing his OT does speech as well, I will find out and if so maybe move him there. I mean if I have to change therapist anyways.
Sometimes it just seems like once we get one thing worked out something else falls apart.

Computers

I have taken the kids computer away.  Not because they did anything wrong more because that's all they do. Am I setting myself up for meltdowns yeah I know I am, but not only the little ones but Roger needs to learn to entertain themselves another way. You can't always have a screen in front of you. While the little ones will go play outside or something Roger will read a book. So far day two and no meltdowns from Roger yet. Besides at some point this summer I am going to have to take it in and have it fixed which means it will be gone for at least a week. Motherboard is crap along with the hard drive oh and the keyboard is losing keys. It would almost be cheaper to buy a new one but i just don't have the money for that and Roger will need it by the time he goes back to school so maybe if I fix one part at a time we will be able to pull it off.

6th Grade Graduation

It has come. Roger is officially done with elementary school and on to middle.  I found it funny when they were giving the awards many of which the child must have homework done everyday and be prepared. As soon as the words must have anything all the time were said its well that wont be my kid. Hey were happy if he has his stuff 80% of the time. But do we care about silly awards that really no body cares if you had all your homework in 6th grade. I know I don't.

Happy Fathers Day!

Anything But Typical

 Anything but Typical                                 By: Nora Baskin

This is what I got from Roger on this book.

Main Characters:

Jason:  A autistic kid who writes books.

Story Line:

He writes stories and goes to a writing convention.  He has a hard time fitting in. He has a little brother, goes to his cousin’s house and gets in trouble. He has his own laptop. He liked the book and he would read it again.

This book is on our school districts summer reading list.

So let me help you out a bit I did not read it but here is a summary from Amazon.com

Product Description

Jason Blake is an autistic 12-year-old living in a neurotypical world. Most days it's just a matter of time before something goes wrong. But Jason finds a glimmer of understanding when he comes across PhoenixBird, who posts stories to the same online site as he does. Jason can be himself when he writes and he thinks that PhoneixBird-her name is Rebecca-could be his first real friend. But as desperate as Jason is to met her, he's terrified that if they do meet, Rebecca wil only see his autism and not who Jason really is. By acclaimed writer Nora Raleigh Baskin, this is the breathtaking depiction of an autistic boy's struggles-and a story for anyone who has ever worried about fitting in.

From School Library Journal

Grade 4–7—Baskin writes in the voice of a high-functioning boy who identifies himself as having numerous disorders, most with labels that appear as alphabet soup. In the third grade, after yet another battery of tests, Jason receives the diagnosis of autism. Now in sixth grade, he relates how he does not fit in, even though he tries to follow the instructions of his therapists and helpers. He labels the rest of his classmates and teachers as neurotypicals, or NTs for short. While humor resonates throughout the book, the pathos of Jason's situation is never far from readers' consciousness. If only he could act on what he knows he needs to do, his life would be so much easier. Jason also shows himself to be a deep thinker and an excellent writer. Through his stories and thinly veiled fictional characters, Baskin reveals not only the obstacles that Jason faces, but also his fierce determination to be himself at all costs. Jason is a believable and empathetic character in spite of his idiosyncrasies. Baskin also does a superb job of developing his parents and younger brother as real people with real problems, bravely traversing their lives with a differently abled child without a road map, but with a great deal of love.—Wendy Smith-D'Arezzo, Loyola College, Baltimore, MD
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved. --This text refers to the Hardcover edition.

Summer

Am I the only one who is dreading summer vaca. It's not because we don't like having our kids around it's trying to keep them busy. You can only go to the pool so much.
I had thought that I would be working so that would mean the kids would be in some sort of daycare, well the job feel through. I need to find something for them to be around other kids. If given the choice Roger would sit at home in his room and read, he would be perfectly happy but alone and he needs to be around other people. I have tried to find social skills groups but they cost so much. I know we will figure something out and I got a week to do it.
Oh and did I mention the summer reading list for this year is 13 pages long. They only have to read a couple but you give Roger a list and he will read them all. Except for Twilight he says you can't pay him to read that one (I don't blame him it sucked)

Broken

We have plenty of broken things around here mainly electronics. The kids computer is missing keys and moves so slow. (that's what I get for buying a Dell, never again), my husbands Ipod wasn't working, and now Rogers ereader is not working.

As for repairs the computer will not be fixed. Dell wants more than it would cost for us to just buy a new one. So for now the kids can deal with a slow computer. I will need to get the situation fixed before school starts though but new ones are so expensive. The Ipod was sent in and fixed very quickly and sent back, but now it is MIA at fedex. Fedex wouldn't talk to me so Apple took over and has been trying to figure out where it is. All fedex told them was they have a large facility and it takes time to sort packages, hmm 15 days at a sorting facility sounds like code for we lost it or someone stole it.

I am in the process of sending Roger's ereader back to be fixed. It is no longer charging we have only had it since March so it should still be working but they seem willing to fix it. We recently had to send Lucy's Nintendo DS in for repairs and they are very fast and painless on repairs.

So what I know now is Dell sucks at repairs, they don't want to help and usually you can't get anyone who speaks English so its just frustrating. Will not use them again.
Apple is awesome at repairs very quick and have been very helpful in this lost package situation.
Kobo I'll let you know once we are done with them.
Nintendo if you have kids yes use them, not only does the equipment have the 1 year warranted if they fix something it resets the 1 year warranted on the product. Also very fast turn around.

***Disclaimer - I bought all the items none were given to us by any company nor was I asked to do this by any company's, This is just my opinion****

White Coat Syndrome

I was reading a post by Diary of A Mom , where she was talking about the doctors who don't read paperwork but just know it all. We all have heard of White Coat Syndrome where as soon as the Dr. comes in we forget everything and BP goes up all that good stuff. Really though I think some of the doctors have White Coat Syndrome where once that coat goes on they know it all.

The post made me think of a psychiatrist we saw years ago. Roger would have been about 6 or 7. The way she did things was the parent would come in first and talk with her and then she would see the child on another appoint. Ok seemed kind of weird but whatever.

I went to see her and was telling her about some of the things Roger was struggling with no friends, difficulty paying attention unless its something he likes, easily distracted, etc...  She talked to me for less than 10 min. never saw Roger much less meet him, didn't talk to teachers. In that 10 min she deiced he was ADHD and needed to be medicated immediately. She wanted me to take a script for Ritalin for daytime and some sort of sleeping pill for the night.What she was not listening to was the school district had already evaluated him for ADHD and said that was not it but they didn't know what at the time.

I asked her shouldn't you see him first. She said no I already know whats going on. I didn't walk away from that doctor I ran.

Fast forward 4 years and age 11 and he is diagnosed with ASD, SPD, Executive functioning all of which explain the behaviors that were so confusing to everyone. I wish I still had her number, I can't even remember her name and who knows if she is still in practice. Just to call her and say hey remember that kid you tried to dx without seeing him (oh wait there's probably hundreds) you were wrong!!!

Why Autism Mom's Act the Way They Do.

http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=90473

Great article. :)

Camping

Lucy and I are going camping with the girl scouts this weekend. No its not the cabin sort its the tent sort.  You would think all the preparations would be for her but nope they are for me. Besides the normal packing change of clothes, sleeping bag, flashlights, stuff like that we add my list also known as my insurance policy:

• Epipen (trust me do not want to be without this if I get stung wont be pretty)
• List of phone numbers to give to leader My husbands cell, sis in law and bro in laws numbers too. (one of them has got to answer right)
• leave directions to get to camp for husband

Now I figure if I have this I won't need it.  It has always worked in the past.  Only had to use the darn pen once and it hurts by the way.  If you ever wanted to know if you are allergic to bees you are also allergic to Portuguese man a wars, only man a wars hurt a heck of a lot more. The being stung is a story for another day.

Need More Time

We need more time in a day around here.  I saw Rogers primary today and got the referrals/orders that I needed. (i.e. Occupational Therapy and ABA). What I was not expecting was three times a week ot, and up to 15 hours a week of ABA.  This is added to 1 hour of speech a week plus the psychologist so we are looking at possibly (I say possibly because I doubt insurance will approve 15 hours a week I know we will get a min of 8hrs) 20 plus hours a week therapy along with starting a new job.

Yep I am going back to work in a little over a week full time. I'm going to have to get people to work with me. When it comes down to it therapy is at the top of the list but we also need the income.

Strong