Monday, December 19, 2011

In the Middle: Finding Where We Belong

In the past year we have gone from not fitting in to really not fitting in. Let me try to explain this a bit, hopefully I make sense. You see both my ASD kids are High Functioning. Yes I'm adding Lucy into this now. I don't need a diagnoses to know it is her older brother all over again. The high functioning asspect puts us in the middle. They don't fit in with NT kids and they don't fit in with lower functioning kids. So what are we to do.
A example of this would be Roger wanting to play baseball. The regular little league is not for him, all the tryouts and the pressure to win would just be to much for him. Besides with his motor skills problems (i.e. the kid has no balance) he probably would not make the team. On the other end is the special needs baseball. We don't fit in there either. What do you do when you are not high enough functioning for NT activities but at the same time too high for the special needs groups.
We have gone to events were yes everyone no matter the need is welcome, and no one has ever said you don't belong here but we just don't belong. The other parents talk about doctors and treatments etc we just don't have the medical needs. When your kids classmates are volunteering at the events it makes it worse on him. I want him to have the socialization but I also know he has to face these kids in the halls at school.
We are just at a loss right now. Where do we go? Where do we belong? Do we even belong in this group who have so many more struggles than us on a daily basis? We are stuck in the middle and we just need to find where we belong.
I know there are more families just like us we just have to find them.

Wednesday, December 7, 2011

Red Solo Cup

Last weekend I took Roger and a friend to Target.  When we were done there we went to Safeway.  Safeway on a weekend is nuts, to many people and many of them rude.  They always look at me like I'm nuts when I have all four kids with me.
Getting back to the story the two older boys basically were playing with anything they could find and just being teenagers.  As we were finishing up and going to the checkout line.  They spotted a stack of red solo cups.  This triggered both Roger and his friend to break into song with Toby Keith's Red Solo Cup song.  So not only did I have four kids with me in the store but two were singing.  Do I care? No not really they had fun and no one got hurt, well some peoples eardrums may have hurt from the off key singing but they will get over it right?

When I went to post Toby's video I saw (I had heard about it) there was a Glee version. I am not a fan of that show have never watched will never watch it. Really could they please leave this song alone. Just because it's popular does not mean we want to see it on Glee. Besides isn't Glee supposed to be a hs show why they singing about beer? Sorry for the rant.

Thursday, December 1, 2011

R.I.P. Pooh Blanket

Facebook post from November 5, 2011: 

"finally got Roger to agree to give me his pooh blanket to wash. It's a crib comforter that he has had since he was born. It's a fight to get it from him and by the looks of it I don't think it will survive another wash." It did survive that wash.


Today's Post: 

"The blanket he has had since he was a baby is no longer. It finally fell apart it has been 12 years. Which lead to a 2 hour meltdown which involved rearranging the house because he could not tape the blanket back together. Of course since it has been 12 years I cannot find another one, so far it looks like a blanket his great grandma made him will work as a replacement."
Pooh Blanket


Yes you read that right pooh blanket is gone. Roger came out of his room last night all upset and all he kept repeating was it's broken. Rearranging my house because he cannot get what he needs to say out. Finally he ended up going in my room to the trunk that has their baby stuff. Yes I am that mom I have there first outfits, costumes, etc. I have restricted myself to one trunk, anyways my hording of baby crap is not the the story here that's a whole other post. When he gt the stuff off the trunk and opened it I saw what the problem was he was putting pooh blanket in there.

While you can see through this blanket yeah its that bad he still wants to keep it. Now he is putting in the trunk rather than in his bed. Now before we got to this he took a roll of scotch tape and tried to tape the blanket back together. Of course that wasn't going to work which is what set off the meltdown. 
You can see where he tried to tape it


On the progress side:
1) He deiced it was time to retire the blanket. (while he wont let me throw it out he put it in the trunk) 
2) I have other baby blankets that are his from when he was born and he was willing to try another one. Right now a blanket Nana (great-grandma) made him is what he has chosen.
3) Usually during a meltdown I might as well be talking to a wall, I'd get a better response. While this one started like that like he did calm himself down enough to tell me it's broke, tape wont work and I feel sad. (go figure somehow I figured out how that all went together.

R.I.P. Pooh Blanket

 

Wednesday, November 23, 2011

Thanksgiving


Thanksgiving is upon us again. We will be spending it with my sister in law and friends. We have a total of three turkeys (yeah we tend to have way too much food). One will be baked and two will be fried. Roger cannot wait to see a turkey fried.

Growing up I hated it. None of my friends could come over, everything was closed and really I was bored. I still kinda think it’s a useless holiday but then again what’s so wrong with an excuse to have a ton of food. Not that we need one in this family.

 I am thankful for my Roger and Lucy, who have taught me more than I could ever imagine who I love with all my heart. I wouldn't have it any other way.

I am thankful for their siblings, who have grown up quicker than most children, who know the world does not revolve around them. I love you all and am PROUD of each and every one of you! Porkchop can sit through an IEP meeting or therapy appointment like no other. Wonder if that’s a skill he can add to his resume later in life.

I am thankful for my husband, who after 10 years of being a single mom, came into my life as part of the family (I knew him before I had kids), accepted the challenge, simply because he loves me. Thank you for all of your help I know that there are times that you want to run.  But you don’t.   Not to mention that you are hot and can fix pretty much anything no matter how badly I’ve screwed it up. 

No matter how hard life may seem at times, I know that I have an amazing life and a lot to be thankful for!

Wednesday, November 16, 2011

Therapy: The GOOD Story

The Starfish Story
(adapted from The Star Thrower, by Lauren Eisley)


Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects and throwing them into the ocean.

He came closer still and called out "Good Morning, May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean".

"I must ask, then, why are you throwing starfish into the ocean"? asked the somewhat startled wiseman.

To this the young man replied "The sun is up and the tide is going out. If I don't throw them in, they'll die".

Upon hearing this, this wise man commented "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said...

"It made a difference for that one".
 **********************************************************************************

The right therapist makes all the difference in the world. I have written about therapy before usually how I don't follow common practice and do every sort of therapy possible and how hard it is to get appointments. This is another side of that story. This is what happens when you find the right place and the right person that fits just right for what you need.

When I was looking for therapist I kept calling the ones closest to me and the ones that had been recommended. We were on the wait list at childrens for OT that was 6 months long. One day I just got tired of being told 1) we don't take your insurance 2) no space available 3) we have no experience with autism. I think I just used Google and Goggled every OT within 2 hours of us and emailed every one of them. I must have emailed close to 20 and of that 20, ONE responded. The one that responded Achieve Beyond

I talked to the office manager L who took some information from me. L originally told me it could take up to two weeks to get insurance approval but they did take my insurance, knew how to handle autism, and best of all NO wait list. I didn't expect to hear from L for a couple of weeks but he called back that afternoon. he had already gotten approval and had some options for times to come in for the evaluation within the next two weeks. Once the evaluation was done he emailed me a copy of it and again already had approval for treatment and options for appointment times. The office staff here especially L has made things painless on the insurance aspect of it.

Now for our OT C. When it comes to C you can not ask for a better OT. She knows what she is doing and the progress that she has facilitated is nothing short of amazing. She gives off the impression that while yes this is her job its more than a job to her. In the past any sort of doctor appointment would stress Roger out and he just didn't want to go. Now he wants to go. He knows once a week we are going to see C and she is going to let him play with the swing (really I should get one of them). C uses what he is interested in to work on things. Yes he does have to do things he does not want to but there is the payoff in the end and that works for him. She makes therapy not therapy it's fun for him. She is worth every penny.

We liked C so much that when we lost our speech therapist at children's and were put back on their 6 month wait list I called L again and asked if they had any available appointments. Again the process was quick and easy and they even got us a speech appointments with S following Rogers appointments with C. Considering we have an hour commute each way this is very helpful for us. We just started with S a couple weeks ago but so far so good. :)

If you are looking for a clinic and you are in Metro DC Area, California, Connecticut, New York, or Illinois check Achieve Beyond out. website, Facebook. If all of the clinics are like the one we go to you will not be sorry.

Wednesday, November 9, 2011

The First Year

It's already November. We are at the tail end of our first year with a dx and the first year of therapies. I think the year prior going to Dr. to Dr. was worse. Now we have our little group of Doctor and therapist and Roger is comfortable with them.
Back in January things were a little overwhelming. Roger was about to turn 12 and now the doctors are saying well we should have done this years ago like when he was 3 but it's not to late. They rattle off the list of suggested (that's the key word here)therapies and like most I initially thought we had to do them all. Just cost alone I would need to work 6 jobs and then the time he would have no time to be him. Every new doctor we went to added to the dx list. Trust me I would be here for days trying to list them all and their idea of what therapies will work. Eventually I realized I don't have to follow them all so we prioritized what were the most important speech and OT so that's what we went with. Almost a year in and he is doing great.
Sure when we lost our first speech therapist and he started OT we had a little regression but it ended up being a good thing. Now instead of going clinic to clinic all his therapy is in one clinic and the therapists know each other and work together.
Roger hasn't changed he is the same child he has always been. What has changed is the anxiety is lower. He now has help in place at school and instead of the frustrated c student we have a calmer A student. He transitioned into middle school smoothly. As his speech improved and he became more confident he is self advocating more. Now he will tell the doctors what is bothering him, I don't have to guess as much. We still have bad days. There are still days where all he will talk about is legos but hey he's talking. We have chosen to focus on all the positives and the good days and not the bad. Even with Autism he can still do great things.

Wednesday, October 26, 2011

Random

For lack of having anything to say this is just a list of random stuff about me.


1) I am that girl. Thats all I got to say on that take it as you like

2) I have lost count of how many schools I have gone to. No I did not get expelled I'm a military brat we moved ALOT!

3) Speaking of school it took me 10 yeas to get a BS degree. I'm not kidding

4) I have been asked to leave a Carl's Jr. (hmm how many of you know what that is) for being silly in high school.

5) I still talk to my best friend from 5th grade. Both of us being military brats this is a amazing feat to still be in contact 20 something years later.

6) I met my husband when I was 18.

7) I didn't marry him until I was in my 30's. Long story we will skip that

8) I have multiple fractures in my spine.

9) I was in NJROTC in HS. See I told you I was that girl.

10) I would rather clean toilets than do the dishes.

11) I do not own a dishwasher, well unless kids count.

12) I am the procrastinator. However, I do my best work at the 11th hour when my back is against the wall. I am the queen of last min. BS papers. Yes I have written masters level papers in less than an hour and gotten an A. Sorry any professors that may have just read this.

15) In my life I have fractured just about every bone in my body except my skull knock on wood. if there is a dumb way to get hurt I've done it.

Monday, October 17, 2011

Can You Read People?

Really look at this chart. Would you be able to read emotions just off this?
Reading people is one of the things that Roger will openly tell people that he can not do.  He can't tell you if someone is mad, happy, sad, scared just by looking at them.  He has to be told. Well that is usually the case. If he is around people a lot he can sometimes figure out what is going on but not always.
His brothers and sisters start to get annoyed with him he doesn't realize they are getting annoyed until they start screaming. Then he backs off. This weekend my husband had a bad week so he wasn't in the best of moods. The other kids picked up on it right away not Roger. Not until someone told him did he get it.
A case where he has noticed would be with me. I have a back injury that causes pain and sometimes it can get pretty bad. Roger has figured out that if I am quiet and moving slow I hurt.Now he still has to ask but hey at least he is picking some of it up. He has even told his stepbrother if shes moving that slow it hurts stay away.
I think this may be where some of the misconceptions about feelings and Autism come from.  Just because someone cannot tell by looking at someone how they are feeling that does not mean that they themselves do not feel. Or that they do not have empathy. Look at the charts they give kids to teach feelings they are always over exaggerated faces that no one has in real life. Once Roger is told how someone is feeling he usually understands. He does have some trouble figuring out his own feelings but just because he can't always put a name to them doesn't mean he feels nothing. I leave you with a clip from Parenthood where Amber is trying to teach Max how to apologize.

Friday, October 7, 2011

Kate Middleton???

Neurotypical Mom has come up with an idea. Remember back in Princess Diana's day and how she had her causes well Kate Middelton is looking for one to.
Now I'm not suggesting she jump on board to the cause and cure train but why not the acceptance one. If you want to know how to send Kate a letter yourself visit Neurotypical Mom and find out how. She even has a template for you to use.

From: Neurotypical Mom's  Facebook

Dear all - great news! The National Autistic Society in the UK sent me a note and said that they were 'interested to see the letter to Kate Middleton and hope we get a positive result'! The email went on to say that 'they were sending a message to their press team so that they are aware of this effort'!! Congrats to all, let's keep it up!

Wednesday, October 5, 2011

I am

This has been going around on facebook. This is not my work, I don't know who's it is. I copied it from  We Care About Someone With Autism
picture from Google images


I am the child that looks healthy and fine. I was born with ten fingers and toes. But something is different, somewhere in my mind, and what it is, nobody knows. I am the child that struggles in school, though they say that I'm perfectly smart. They tell me I'm lazy, can learn if I try, but I don't seem to know where to start.

I am the child that won't wear the clothes which hurt me or bother my feet. I dread sudden noises, can't handle most smells and tastes, there are only a few foods I'll eat. I am the child that can't catch the ball and runs with an awkward gait. I am the one chosen last on the team and I cringe as I stand there and wait.

I am the child with whom no one will play with, the one that gets bullied and teased I try to fit in and I want to be liked, but nothing I do seems to please. I am the child that tantrums and freaks over things that seem petty and trite. You'll never know how I panic inside, when I'm lost in my anger and fright.

I am the child that fidgets and squirms though I'm told to sit still and be good. Do you think that I choose to be out of control? Don't you know that I would if I could?

I am the child with the broken heart though I act like I don't really care. Perhaps there's a reason I'm made this way -- Some message I'm sent to share. For I am the child that needs to be loved and accepted and valued too. I am the child that is misunderstood. I am different - but look just like you.

(via Autism Support and discussions).

Thank you Angelic Inspiration for sharing ~ ♥

(I copied this from Connor's Gift~ Embracing Autism in this New Age without "Sharing" -- this is not my work, but it's so beautiful that I wish I could say that it was!)

Tuesday, October 4, 2011

The Humanist Approach to Happiness: Book Review

I received this book from the author to read and review.  One of it's aims is teens so Roger (age 12) read parts of it as well.

Rogers Review:
          It was a pretty good book, but needed something to make it a little more interesting.  Something along the lines of more short stories to explain the stuff.

My Review:
        This was well written and used more basic terms that people could understand.  I jumped on this one because as we all know when dealing with autism we are always trying to find ways to explain ethics, morals, and what to do in situations.  This book was very clear cut and to the point. Exatly what Roger needs. True stories and examples are helpful but when you get into a lot of what if's and hypothetical you lose him.
        I liked the portion on credit cards and how they should be used in emergencies only and how the author did not have one and got stuck in China. Luckily her mom was able to help her out.  Being able to use that as an example as why you do not want to have a card maxed out all the time was helpful.  Roger was able to see it as OK if she had a credit card and didn't use it when she got stuck she would have emergency money to use.
  Another good point in the book was ignore it.  Now the author is not saying if you ignore everything it will go away, but she is saying there are things that happen that you can ignore. Why overwhelm yourself with things that really are not important. If the issue is not important then when you ignore it it will go away. If it is important it will not go away.
     You name it it was covered, love, money, health, addition, sex.  While not every section was right for Roger those that were he read, those that he is not ready for will come later.  He did have a hard time understanding being skeptical and scams but we are getting there. When you have a very literal mind these concepts can be hard to grasp but it did start him thinking about them.
   This book is a easy read, practical and easily comprehensible.I could really see this not only being used in youth groups but for talking points for parents. Sometimes you just don't know where to start the discussion and this can help you jump start them.

check out her website
 This book is available at any online retailer you use.

Discount Codes:
Ebook - http://www.smashwords.com/books/view/22621  : Coupon code: UT36F - Price will be $4.80 instead of $6.00 - that coupon expires Oct 1st 2012.

Paperback go to: https://www.createspace.com/3463716and use the discount code: 2SV7A43M  That will give you 20% off the list of $12.98 - so the price will be $10.38

Thursday, September 29, 2011

The Winner Is:

The winner of Seeing Ezra as chosen by random.org is:

   "lucy_halloran@yahoo.com"
 
Lucy email me your address at noguile04@yahoo.com in the next 72 hours.
 
 
If you didn't win you can still buy a copy at Amazon

Sunday, September 18, 2011

Progress

Everyone knows Roger has always had issues with writing. It is unorganized and hard to understand. We recently started using a visual map (the annoying story maps with all the bubbles and lines we all hated in school). They work. This is just one example of the difference:
Being asked to write a short summary of a book:

without using the visual map:

Artemis Fowl                                           By: Eoin Colfer
Artemis: 12 year old genius
Butler: Artemis’ bodyguard
Juliet: butler’s little sister
He discovers fairies. Gets attacked.  Catches a fairy. Almost gets blown up

Same book but with the map:

Characters:
Artemis Fowl is a 12 year old genius billionaire boy. He lives in a mansion on an island with Butler (his bodyguard), his mom, and Juliet (Butler’s little sister). His goal is to capture a fairy so he can get more money for his family. His full name is Artemis Fowl the 2nd. His family’s motto is Aurum potestas est (gold is power).

Setting:
Fowl manor is where pretty much everything happens in this story. It is a 200 acre estate near the city of Dublin, Ireland.  It was built by Lord Hugh Fowl in the 15th century. Fowl manor has several floors including one with prison cells, one with a karate dojo and one with a tech room. The tech room is where Artemis translates fairy language.

Plot:
Artemis Fowl starts out the story looking for a fairy. He finds one and shoots it with a tranquilizer. He then puts the fairy in one of his prison cells. He sends the other fairies a ransom note for 2000 pounds of gold (1 ton). The fairies then attack Fowl manor with an ogre and a nuke. The fairies end up getting back half of the gold they give him but Artemis survives the fairy nuke.

I did not help him with this other than helping his set up the map.

Monday, September 12, 2011

The Rest of The Story

This is a hard post to write. Some of you will think I am crazy but I am telling the truth.  I wrote a post about a month ago about my son and his connection to my cousin who died years ago. ( Read hereThe emails I got were amazing and supportive. Here is the whole story. I'm finally ready to tell it.
On August 17, 2002 my cousin died. He had gone to Mt. Cruiser in Washington state to climb with a friend. I was working that day. Towards the end of my shift around 8pm a coworker who worked search and rescue was called out. I thought nothing of it. A few minutes later I recieved a call that there had been an accadent.  I don't think I have every driven so fast to get home. At the time I only had Roger he was 3. My parents went to the rangers office to be with my aunt and uncle. I went home.
At this time we knew nothing. All I knew was his friend had hiked for hours to get help after Jason fell. I put Roger to bed and a friend came over to stay with me. Around midnight Roger came downstairs and said "mama Jason can't come home. He has a big owie on his head. He said to tell you he is OK." At this point noone had found him yet. The next day we learned he died of a head injury. I was in shock he was my biggest supporter.
This was just the start. Roger went to the wake but not the funeral, I thought he was to little for that. I did go pick him up and take him to my aunt and uncles house afterwords. He kept saying hes OK hes happy he doesn't want everyone to be sad. Really this coming from a 3 year old.
This has gone on for years. Roger is 12 now from the time he was 3 until now I will come across him having full on conversations with someone who isn't there. When I ask who are you talking to he always answers Jason he looks out for me. It does bring him some comfort.
The first school he went to was a private catholic school this was before he ever got any diagnosis. His teacher would find him under a table talking and he would tell her I'm talking to Jason. She told me about it. She was very calm and said I can't explain this and I will not try your son is a lucky boy who has a guardian angel watching over him.
Fast forward to last year. We were driving and traffic slowed down a few times. We were in a Kia Sedona. The driver behind us a Nissan Tacoma. The driver hit us at around 50 MPH. My van was totaled, everyone walked away. Roger and my husband had concussions. The little kids in car seats unharmed. 
After emailing his nuroligist about what happened and that he was not acting right even for him she said bring him in. I did and she asked him about what happened his response was chilling. "We got hit I started to come out of my seat but Jason pushed me back into my seat and held me so I would be safe."
I guess she saw my reaction and took me in the hallway and asked "who's Jason?" I told her thats my cousin who died years ago. She didn't freak out or anything just said maybe he was there maybe he is why none of you were seriously hurt. It's not as often as it used to be but he still talks to him and he feels comfort from it.
I know I may sound crazy but with everything that has happened in the past years I believe him. Even in death Jason is still looking after Roger, while it gives Roger comfort it does me as well I couldn't ask for a better person.

Saturday, September 10, 2011

Flood

We had some flooding two days ago. I have no words for it, I will let the pictures do the talking.
The Rain.
This is a street not a pond

Street you can see that the water is to our front porch


Husband standing where My van was parked before they pushed it out.

Guys walking to push another car out of the water.

The black pot is our mailbox

My Van. No I did not drive into this I was parked before the water came.
Standing water in my center console

More water inside the van
Trying to air the smell out of it. It smells awful, it's a total loss but insurance wont pay for it so we have to clean it the best we can.  This is also where it was parked when the water came.

Front of house. Water was all the way up the hill to the porch

Thursday, September 8, 2011

Seeing Ezra: Book Review and Giveaway

Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of NormalSeeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen

My rating: 5 of 5 stars


When I was asked if I would like an advance galley copy of this book to read of course I said yes. We don't turn down books in this house. I was prepared to read yet another book from a mom that was from the martyr standpoint. We all know the poor me feel bad for me autism books. This book is not that type of book. The first quote that stood out to me was " Tonight, autism comes into my house and settles into the cushions of my couch. As of tonight, autism is here to stay. It will not be leaving, not ever again." We have all been there. Autism comes and settles into our life and it will never leave.

I was drawn in from the very beginning and read this in one night. From the start you can tell she loves her kids to no end and would do anything for them and not expect anything for doing it. You come to find out that Kerry doesn't care what society thinks she should do she wants what is best for Ezra.

There is more than one story going on yet it flows. Not only is it the story about Ezra but also the story of Kerry's marriage and how it suffers. I have been there when you get so wrapped up in your child and what society thinks you should be doing your spouse kind of slips away.  As she is dealing with testing her husband is slipping into depression. Never did I get the feeling that I should feel not only poor mom, but never poor Ezra.

She briefly talks about some issues she has with her parents. If you have read her book  Loose Girl which I reviewed here  you know what she is talking about and the extent it really went.

Kerry did a brave thing that many parents will not do she told us what she was feeling during the testing sessions. That the therapists are basically nuts and say what you want but many do treat the kids as damaged rather than as kids.  She thought there was a better way to do therapy rather than frustrated the child, and she found therapist that she was comfortable with and walked away from ones she was not. The debacle with the autism school will leave you wondering what the heck happened here, who do these teachers think they are, and reminds you do your homework. Don't forget Frankenmilk. No matter how you feel about autism therapies you must read this book. For once there is a book by a parent that is not about "fixing" but rather acceptance that Ezra is who he is and that is OK.

The quote from the book I leave you with is "If this was a different kind of special needs memoir, I would find the therapy or supplement that makes Ezra all better. I would save him. But that's not our story. The Great feat in Ezra's and my story is that I do nothing. Finally I do noting. I let Ezra be who he is."

Giveaway time-
Want to win a copy of Seeing Ezra for yourself,  Winner will be chosen randomly from comments.

Mandatory leave a comment below.

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One winner will be randomly selected from the qualified comments received by Wednesday September 28, at 11:59 PM EST. Please leave an email address on one of your comments. Winner must respond within 72 hours or another winner will be drawn. Contest is open to Canada and the USA.

*copy of book for myself and giveaway at no cost by publisher.
View all my reviews

Wednesday, September 7, 2011

First Day of School

First day went fine for everyone.  First thing Roger said when he got home was the food is much better! It's always about the food with him. Lucy was a little unsure but was fine today just hates waiting for her bus which is ALWAYS late!
7th Grade start of Middle School

2nd grade she wasn't too sure

Lucy's bus. I was banned from going anywhere near the middle school bus

Letter to Teachers (teachers input please)

I got this idea from another autism mom.  Rather than try and meet with every teacher in the first few days to write a letter.  Not only is it easier than verbally saying everything as I know I would forget something but they can reference it later if needed.  This site gave me a starting point.  I used it as a template and added what I needed to and took out what I felt was irrelevant.  I do not want to sound condescending to his teachers that would not be a good way to start the year.

I know some of my followers are teachers so I will post my version of the letter and please anyone parent or teacher let me know if you think I am leaving anything out or can change something.  As I said I want to get across that I am supportive of the teacher and want to work as a team.

The letter:

September 7, 2011
D
ear Teacher,
  
We have set up this form letter to give to every teacher to help them better understand our son,  _____.  His IEP has all his testing and the education plan so I will stick to some things you may experience with him.   Andrew has been diagnosed with autistic disorder.  The co-existing conditions that ______ has are Sensory Processing Disorder, Auditory Processing Disorder, Anxiety, Executive Functioning Disorder and a movement disorder.   I just wanted to let you know a little more about him in writing and it’s easier than verbally trying to explain it all.

While these issues are complex, you probably won’t be able to tell anything is different, at least for a while.

_____ is a very curious child that pays attention to very small details and can get “lost” in the shuffle of daily activities.  Working together as a team with open and frequent communication is the key to helping ____ manage himself and find his place.

We have been working with _____ to develop self-help and coping techniques so that he can manage the over-stimulating and confusing world around him. 

Some of the things we have found that help _____ are:

One of the challenges with his auditory processing disorder is sometimes he does not always hear what was said to him.  Visual Cues are key:  Charts, Outlines, Graphics (Visual will always work better than auditory).  He will have a folder for each class, inside of it I will place a checklist for him to look at as well as a basic one for his locker to help him remember what supplies to bring to class. 

With The executive function disorder ____ has almost no organization. In the past, he would often forget his belongings and then later would “melt-down” over forgetting something.  He is determined this year not to improve on this.  _____ almost never relays information to me about his day and would never remember verbal instructions to be told later, so I will be accessing blackboard on a daily basis to help him at home stay on track. Using a planner has been a struggle for _____.  He doesn’t know what to write down or how to write it down. We are also working with a private Occupational therapist on a weekly basis to address the organization skills.

With the sensory processing disorder little things in the environment will distract him.  He does not have problems with the loud noises it is the little noises that affect him.  An example is the sound of pencils on paper.

Some things you may notice are ____ has a few what we call tics.  He constantly has small movements, tapping legs, moving arms, and some facial and head tics at times.  He cannot control these movements and when they are pointed out they become worse as he tries to control them.  When he gets anxious or frustrated these movements also become more noticeable.  There have been a few occasions that this has looked like a seizure.  He has had extensive testing and does not have a seizure disorder it is just anxiety.  Usually removing him from the situation for a few minutes will calm him down and help him to regain his composure.
  
______ is a very mild mannered boy and won’t cause any trouble in class.  He is shy at first and then he becomes very entertaining the more he opens up to people.  School can be difficult for him.
We appreciate your willingness to educate our son.  We are looking forward to working with all of you and having a great school year this year.  Please don’t hesitate to contact us with any questions or if any problems that arise.

Sincerely,
My Name
Phone number and email address

Monday, September 5, 2011

Therapies and When You Don't Follow The Masses

One thing we all know about the world of autism is the multiple therapies that are around.  In the beginning you are made to feel usually by other autism parents if you do not jump on every available therapy there is you are not doing all you can for your child.
I have never been a jump on the bandwagon type of person so many of the so called therapies I would never consider. (i.e. DAN doctors, chelation, no vaccines or flu shots, and the list goes on).  On top of this you add neurologist, psychologist, speech therapists, ABA, OT, PT and on and on.  Really who has time for all of this.  Sometimes you are looked down upon when you walk away from the therapies.
For the most part I have. Roger receives OT, Speech, and sees a psychologist.  He needs these to function.  We see his neurologist every 6 months to check in and his neuropsychologist once a year.  This works for us. As it is he already has 3 hours a week private therapy. He is going into middle school he wants to do after school activities and he has to have time to do his homework. So with school, his therapies, after-school stuff, and homework a lot of time is already taken up he needs some down time in there too.
His neurologist agrees with me. When it came down to time lines therapy was going to be close to 40 hours a week. Really he needs to be a kid not someones guinea pig.  What better way to teach him social skills and have him practice them to have him out in the world not in an office.
I have literally been yelled at for not going to a DAN doctor. First off I think they are quacks. Second off even if I had wanted to I don't have thousands sitting around to pay for supplements and testing. We have a hard enough time as it is just keeping food on the table and the lights on. Then it was Roger was not tested for heavy metals by an approved facility. Um he was tested in his doctors office when they thought he was having seizures they wanted to rule that out, which it was. I think my family doctor is an approved facility.
The kid has been a pin cushion and guinea pig long enough and this mom has decided enough is enough. No more tests (all his doctors agree). What does he need to function. If it is not absolutely essential then we don't need or want it. And if wanting my kid to experience the world for himself all the good, bad, ups and downs makes me a bad mom then so be it!

Wednesday, August 31, 2011

Irene

We survived Irene.  Didn't get near the damage that was expected. At the worst we lost power for the night but considering some just south of us lost it for days and some people are still without power we can't complain.
kids all went in one room with every toy that had light that night.



Wednesday, August 24, 2011

What Porkchop Teaches His Sibilings

Sometimes it is the baby that teaches the older kids rather than the other way around.  For years Lucy never did the imaginary play, her idea of playing was carrying her doll around with her.  Porkchop changed that, he's always playing with his cars and making them interact with each other. She started by trying to copy him but now she plays with him.
He has taught all three older kids if you don't put your stuff away he will do it for you and it will never be found.  He is also one of the big motivators to get Roger to ride a bike. Roger never showed interest until his little brother was about to pass him up and he was going to ride the bike first.
I have been told that all this is to be expected. Since Porkchop does not have any DD he may pass his siblings but as he learns to do stuff so will they, that he will be the one not some therapist that will teach them. Not to say that the older ones do not teach him.

There's a Bear in the House


Crossing a Street

Playing Camping


Their Pretend Campfire

Wednesday, August 17, 2011

Loss

It's a bad time of year for us.  Today is the 9 year anniversary of my cousins death.  He died at 24 in a mountain climbing accident.  The other details are not important.  The only one of my kids he meet was Roger and he was a big part of Rogers life for his first three years.  He kind of stepped in as a father figure when Rogers dad was not around.
Roger recently saw pictures of him and being that he was only three at the time I didn't think he would remember who he was based on a picture but he did.  He saw the pictures and said that's Jason, he hurt his head and can't come back. True. He used to take me to play real golf. True He took me to the zoo. Also True. He protects me now. True
Roger and Jason
 He still says I talk to Jason all the time. This has freaked some of his teachers out.  A preschooler off in a corner having a full conversation with someone who is not there, once they know it's not an imaginary friend and hes talking to a dead person. Freaks them out more today now that he is 12.  I've gone in his room and seen the same.  Though over the years it has become less frequent for him but I have noticed when he is really stressed out that is when this happens.When we were in a car accident last summer, he said Jason was there he kept me in my seat.
Do I think my child is talking to ghosts maybe, Whatever it is he gets comfort from it.  He has a friend that he knows he can say anything to and it will never be repeated.

Friday, August 12, 2011

The OT Dictionary

We received Rogers OT (occupational therapy) results yesterday and man do they use big words. After I got it I decided I would write a blog post just on what these words mean. These are just a few of what we heard not a complete list. That would have to be a book not a blog post. :)

Sensory Processing Disorder: "is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

One study (Ahn, Miller, Milberger, McIntosh, 2004) shows that at least 1 in 20 children’s daily lives is affected by SPD. Another research study by the Sensory Processing Disorder Scientific Work Group (Ben-Sasson, Carter, Briggs-Gowen, 2009) suggests that 1 in every 6 children experiences sensory symptoms that may be significant enough to affect aspects of everyday life functions. Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children and adults with SPD, these difficulties are chronic, and they disrupt everyday life." (http://www.sinetwork.org/about-sensory-processing-disorder.html)

Auditory Processing Disorder: "Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a complex problem affecting about 5% of school-aged children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.

Kids with APD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems usually occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions." (http://kidshealth.org/parent/medical/ears/central_auditory.html)

Visual-motor integration: Eye hand coordination

Manual Coordination: Control and coordination of arms and hands

Fine Motor Control: coordination of distal muscles in hands.

Sensory Processing related to endurance/tone: Muscle tone

Modulation Related to body position and Movement: do they turn head to look at you or full body.

Vestibular processing: The vestibular system detects movement and gravitational pull, and it provides information regarding the position of our head in space and acceleration and deceleration of movement. It is the first sensory system to fully develop in utero and is located in the inner ear. The vestibular system has strong neurological connections in the brain and is a major organizer of varied sensory input. This system is considered the most influential sensory system and has tremendous impact on one’s ability to function daily. Directly or indirectly, the vestibular system influences nearly everything we do. It is the unifying system in our brain that modifies and coordinates information received from other systems, and it functions like a traffic cop, telling each sensation where and when it should go or stop. (http://nspt4kids.com/health-topics-conditions/vestibular-processing/) Basically this is why he moves all the time ie rocking.

Monday, August 8, 2011

Parents Best Blog



I have been nominated for Parents Magazine Best Blog Award under special needs. Take a minute and vote for me. thanks everyone.

Sunday, August 7, 2011

IEP's By Dr. Seuss

IEPs by Dr. Seuss

Do you like these IEPs?

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.

Would you, could you
Like the form?

I do not like the form I see
Not page 1, not 2, or 3
Another change
A brand new box
I think we all
Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk. No, not at dawn
at 5 pm I should be gone.

Could you hear while all speak out?
Would you write the words they spout?

I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them
So you say
Try again! Try again!
And you may.

If you will let me be,
I will try again
You will see.

Say!

I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You've got it right!"

 From: http://medsped.soe.umd.umich.edu/belinda/iepsbydr.htm

The Lindsay Foundation

 While many of us may never need assistance such as they provide, we can still help those who do with just a click. Take a second and  VOTE. Visit them on Facebook and check them out. They have already done some amazing things. Just read about them http://www.lindsayfoundation.org/

The following is directly off the Lindsay Foundation Facebook page:

Why I KEEP Asking!!!
by Laurie McMillan Hammond on Tuesday, July 12, 2011 at 11:17am

I don't normally do this, but then I realized how many new friends I have and how many may not know what The Lindsay Foundation is. So, just a brief explanation follows.

I am Lindsay's Mom!! I am the Founder of The Lindsay Foundation. And, I am passionate about it! I will cry; I will beg; I will do whatever it takes to see this succeed. I might even lose friends. But, I've been down that road, too. I lost some friends because I was no longer in a "normal situation" after my daughter was born.

Lindsay was my life...just as your children are your lives. I loved her, clothed her, fed her and provided for her for fifteen years. And then, God decided that He needed another angel...and My Lindsay was chosen. She was the sweetest, most loving child, a joy to have in my life!! And then, there were the doctors, the therapists, the therapy equipment. the walkers, the wheelchairs, the surgeries, the meds, the feeding pump, the home i.v. antibiotics, etc. You get the idea.

So you see....I am the Mom of a child with special needs. I've battled and fought and cried and felt the frustration of the difficulty of providing for my daughter. Now, I battle and fight and cry, oh and don't forget, beg over the Foundation that keeps her memory alive.

We don't pay for research. (Don't get me wrong; I do know how important that is.) The goal with The Lindsay Foundation was to provide a better quality of life for the children having to live with these disorders, while they're waiting on the cure. I know first-hand how difficult it can be to provide EVERYTHING that is needed. We cover all children; it doesn't matter what their diagnosis is, as long as it is considered long-term, catastrophic medical. We have provided wheelchairs, medical strollers, special seating systems, wheelchair lifts, supplies, such as catheters, syringes and therapies. We cover, physical, speech, aquatic and hippo therapies.

So, though it does get annoying sometime, please try to understand, that to me, this is very personal. I have actually lived the life of the parents that we are desperately trying to help. I know how difficult a road it is to travel. So, please, understand that these families live with these special circumstances for years. And bear with us for just another three weeks. And, if you feel led to join us, please vote daily to help us stay in 2nd. I would appreciate it and all the families that will be helped, will appreciate you. Please vote here: http://www.vivint.com/givesbackproject/charity/24

Remember: YOU COULD BE THE WINNING VOTE!!!! Thank you...God bless and I BELIEVE!!!!!

Sincerely,
Laurie McMillan-Hammond
Lindsay's Mom

Wednesday, August 3, 2011

Autism and Life Skills

Many things that Autistic people struggle with NT people take for granted.  Something such as ordering your food at a restaurant or correcting a cashier in a store while for most NT people is nothing for someone with autism they may struggle with this. Here are just a few things that take longer for some to learn. There are many many more than this these are just the four we have been working on lately and I can tell you what has worked for us.

  •  Ordering food: yes it is easier for us to do it for all of our kids but now I have them do it.  Roger can take some coaching or reminders to slow down his speech but he is getting better
Me: What do you want to eat? (while still in line)
Roger: Chicken fries and a shake
as soon as we reach the counter
Me: Order your own food.

  • Correcting a Cashier: OK so this one can be hard for anyone but in our case Roger showed yesterday that he can do this. He was buying candy at the grocery store yesterday the sign said buy 2 get 2 free so he was getting 4.  When they rang up he was charged for all 4 rather than the buy 2 get 2 deal. The first thing he did was ask me if I had swiped my club card (he knew you had to have the card to get the deal) I had.  Then he told the cashier that's suppossed to be buy 2 get 2. At first she tried to say no but he said the sign say she said the signs are for the item above not below. Here comes the coaching 
Me: Where was the candy?
Roger: Bottom shelf
Me: Where was the sign above or below?
Roger: Below
Me: did you read the sign?
Roger: Yes
Me: What did it say?
Roger: Airheads and thats what this is.
Yes it would have been easier to say hey lady the items over there and look at the sign but this made him think through what was going on . Cashier ended up giving him the deal because he was right. 

  • Crossing the Street: This just comes down to safety. Everyone needs to know you have to look not just run into the street. We finally got this one down but there are slip ups at times.  There was once last year I was driving someone else car and Roger was not expecting me to pick him up from the bus stop. The bus came and he started walking down the street and when I called him the bus had just pulled away and the cars were stopped. He went to cross and this jerk in a white BMW (who did not even live in the neighborhood just yet another person using our street as a cut through to avoid construction) hit his gas because after you see a bus letting kids off you should always drive like your in a NASCAR race. Anyways he saw Roger and cracked his window and yelled what are you retarded you don't run in the street. All I said was his mother is right here so shut it. He then proceeded to say to me we don't need your kind around here. I'm still trying to figure out what my kind is. Then he sped off. I talked to Roger and told him he has to pay attention because the people in the cars are not! He has not just run into the street since 


  • Answering the Phone: I don't know about you but when you have some problems holding a conversation the phone is a dreadful thing. Roger does have his own cell phone but when people call he will just pick it up and say nothing. It took us a while to get him to even say hello after he answered the phone. Now he rarely receives or makes a call, for the most part it is used for texting. As to the reasons for getting a phone that's a whole other post.

These are just a few things and we must remember not everyone will have the same struggles. I read on Hearts that Know and Feel that we are the best therapists for our children.  It's true you do not need to pay someone hundreds of dollars to teach your kid to order food. Take them out in the world, let them experience it and if it bugs someone else oh well they will get over it. Very rarely have I had anyone say anything to me when they see me working with him to do some of these things.  Most people are not going to yes it makes their wait a minute or two longer but most wont care and if they do they will get in another line.

Wednesday, July 27, 2011

Autism and Empathy

One of the things I constantly hear is people with autism cannot feel empathy. Lets get this straight this is crap. Just because they show emotions differently does not mean they do not have them. Case in point. My youngest porkchop was 1200 miles away visiting his dad when there was a car accident. Roger did not know the details just that the car rolled but his brother was fine and was with his grandparents and we would be picking him up that Saturday.
For the next week every time we went to the store he wanted to buy his brother presents because he was in an accident and didn't get hurt. This was his way of showing he cared. So the whole theory that people with autism don't care is junk.  Some just show it differently. Roger didn't know how to show it so he wanted to buy him stuff finally he settled on a hot wheels car but then he was concerned that the car may remind his brother of the accident. After what felt like ages of talking to him and telling him the car was fine he finally deiced to get it for him and could not wait to give it to him. We were not in the hotel for more than a minute and he was getting the car out of the suitcase and giving it to him.

Tuesday, July 19, 2011

Taking a Break

There is a lot and I mean A LOT of drama right now. None of which I am at liberty to speak of just yet. I will be back once we get things sorted out.

Tuesday, July 12, 2011

Looking Back

I was looking back at some of my blog postings and now some of it I would change.  One of my first posts d-day first off I would change the name of that one it seems so dreadful and depressing. I associate d-day with a war and this is not a war. I had also said I thought I wanted to be wrong about believing he had autism but in reality is was such a relief to be right and know what was going on.  In all honesty it has been great for Roger the diagnosis helped him feel better about himself that he wasn't just some weird kid there was a reason for it.  The best day of the past year has been when he has said I have autism and thats not a bad thing just means I think differently.
I still could care less what causes it or for a cure I would not change my child meltdowns and all. The treatments we do get for him are not an attempt to rid him of autism but rather to help with his communication and executive functioning. Overall I still want him to be a kid. I don't want to spend a million hours chasing down crazy science and the result of my child spending his whole childhood in a doctors office.  Some of the best therapy has been just being in the real world. I am not a bad parent for wanting him to be a kid. He's not some science project for people to poke and prod at we had enough of that. We will go for the therapy that benefit him but the others we will skip.
Anyone else in this position should remember in Roger's words Autism is kinda cool, I don't want to be like everyone else.  Do what you know is right for your child don't just follow the hype (some of that stuff is extremely dangerous by the way). Support the organizations you believe in once again you don't have to follow the crowd. I'm open in as I learned about autism speaks I do not support them. I don't like the science, the politics, or the way their money is spent. But that is me I do not expect anyone to just go on what I say do your own homework check things out.

Monday, July 11, 2011

Shameless Plug

OK, OK I know shameless plug here but I actually got on babbles list (shocking I know) you can vote for No Guile here.  I don't expect to get into the top 25 but hey just to be on the list.

Friday, July 8, 2011

ugg I DON'T CARE

Ok so I haven't been around for bit. Really I got nothing. Been busy with kids and my school. One thing that has driven me nuts and I'm sure I have probably written about it before is all these stupid studies that show some correlation to autism. I mean really what next, I'm sure we could all get together and do a study that shows if you drive a ford your child will be more likely to have autism. Sadly people would believe us.
I want this truck! No other reason for this pic.
The craziest article I read this week was someones take on a study. They said that this study made them more fearful of vaccines.  read it here. Really a study that didn't even look at vaccines made you more fearful. sounds like fear mongering to me.
When are we going to stop posting all these studies as news. Untill there is concreat evidence stop. There are at least 5 a day if not more posted on facebook that all it is is correlation not fact.
When it comes down to it I don't care what causes autism. Can we take all this money that is being spent on studies that are not finding anything and maybe find ways to help those with autism.

Wednesday, June 29, 2011

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

Tuesday, June 28, 2011

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.

Friday, June 24, 2011

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.

Wednesday, June 22, 2011

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.