*Encouragement is the best medicine to give someone. If I were to pick any gift to have in helping others, that would be the one*

Friday, January 28, 2011

Giving Chaz His Own Room

Ryan 9, Kyle 7, Chaz 10 (bottom)

My husband and I had been talking lately about giving Chaz his own room.  Yesterday I said "Let's do it" and we got busy clearing the room out to move Chaz's stuff in.  Chaz was extremely excited.  A couple of things I'm pretty sure about.  First off, that room is gonna STAY clean.  I know Chaz.  When he moved his stuff in he was busy for a long time lining everything up in straight lines.  His chess board was perfect.  His collection of Heroclix was lined up and so was his medieval figurines.  He made sure everything was PERFECT.  One time his little brother come in and messed up something and Chaz was in tears. He was so upset.  Chaz is 10 and my oldest.  I think he's endured having his younger siblings messing with his stuff long enough. He does just need to be able to go in his room and have quiet time.  In a house of eight it can be difficult to find a room with just quiet.  Athough I'm happy for Chaz, my heart was kind of sad seeing him broken away from his brothers.  I've always kept them together and every time I checked on Chaz last night, it made me sad to see him in is room alone. :(  He's not sad. Just mommy.

Wednesday, January 26, 2011

My Difficult Journey in Helping My Son

"Many are so preoccupied w/what others think it defines their existence.It's fear based to be told & to accept that you are this or can only accomplish that. When we fixate externally it keeps us from truly knowing of ourselves & our destiny.Most fear looking inward for worry they won't find greatness, but when we stop allowing others to define our worth you'll see-greatness exists in us all, waiting to be expressed."

Recently a mom wrote me and said:

Wow, a lot has happen at the beginning of the year with my son who is 19 and has aspergers, but a mild form. He was recently certified as a Nursing Assistant at the end of August, now has a full time job working as a Direct Care staff at a group home and is driving now in his car back and forth to work. It is wild, If I had listened to other people such as educators and doctors, I would not have pushed my son enough to be the best he could be and to do things at the best of his abilities, he wouldn't be who he is now.  -Anonymous
Caleb, Chaz in middle, Ashley on right
I see what she is saying. I have to be careful, as I have been, to push Chaz the same way I push my younger ones to succeed. Of course we understand there is a spectrum and not all Aspergers are the same.  That makes a difference.  My son Chaz is high functioning but enough Aspergers that we have to have an IEP plan for him to do well in school.  We've tried working without one and it was disastrous.  In fact, one year I decided to not tell the school at all he was Aspergers.  That was a bad idea because they just called me constantly and he was always being punished for Aspergers type behavior.  Every time I spoke with this school, it was like fishing for things. They acted like I was their enemy and that I was trying to interfere with their school system and how things were set up.  NO, I am Chaz's parent and I have every right to know every single thing they are doing with my son.  Just to visit his class I had to put in a month's notice and have an appointment.  Chaz had the worst year ever with bullying and I just felt a pit in my stomach.  Kids were calling him a freak and he had no friends whatsoever. In fact, that was the year Chaz threatened to hurt himself more than any other year.  I was at my whits end and feeling like everything I had worked towards for Chaz  was crumbling.  At the end of the year, Chaz finally tells me that almost EVERY SINGLE day he was being placed outside the classroom and only allowed to hear the teacher, not see, during the lessons.  You know why this is wrong?  Well, a number of reasons but the biggest one would be that by halfway through the year I ended up telling them that Chaz had Aspergers Syndrome.  Did this change the way they worked with them?  No.  In fact, not only did they continue to leave him in the long, empty, white hallway, they questioned my parenting and required me to prove I had been helping Chaz in previous years. I explained to them my fears of telling them because of our bad past with schools. 

You see, in 1st grade, Chaz was put in a self contained classroom.  Chaz very quickly went downhill and was throwing chairs, turning over tables, and verbally abusing his teacher.  I was baffled because Chaz was nothing like this at home.  It was shocking to hear these reports.  Why was he this way at school and not this way at home?  Come to find out, this teacher didn't believe in Asperger Syndrome and just treated him as a bad kid only that needed to be contained. 

Well, because he was mostly put in a little room and not learning with the class the previous year, I had to have him repeat 1st grade but this time in a different school because we moved.  I thought it might be a good idea to have him placed in a regular classroom and just see what would come with it if I just explained he had Asperger Syndrome.  I was still very new to Aspergers Syndrome so this was the beginning of my journey. A very difficult time in my life.  Many, many, many tears. I loved my son with all my heart. I just felt like I couldn't reach him.  I had to hide the knives in my house because my little 6 year old precious boy was threatening to hurt himself.  Come to find out, this teacher didn't believe in Asperger Syndrome and just treated him as a bad kid only that needed to be contained.

Then a miracle happened. 

The classroom in his second year of first grade, just so HAPPENED, to be taught by a woman that had trained to work with Aspergers kids for 3 years in New York.  My jaw dropped when she told me.  This was purely by accident. She calmly told me she can work with Chaz. He gets to be in a regular classroom.  AND he was going to have someone sitting by him during reading and math to help him along.  She also new he had a hard time staying seated in those hard chairs and brought a cushion for him.  She made him a visual schedule of his day that was laminated. You see, Asperger kids see things in pictures.  She would makes pictures of his day on a paper, laminate it, then let him cross activities out on it as they were completed. She always gave him a warning when that activity would be ending.  She then made flashcards that were laminated, then punch a hole in them and connected to a string.  She made is a necklace where she could flip through the cards.  Instead of saying "Chaz, be quit".  She held up the card for him to see.  She explained that they process it faster when they see it visually.  She explained that there are anxiety issues.  Do not egg in them on in any way. For example:  Don't say "Okay Chaz, since you won't listen, instead of being in timeout for 5 minutes, you will be there for 6 minutes.  Okay Chaz. Now 7."  This will make him more and more upset.  I needed to encourage him GREATLY.  They already experience a lot of rejection at school and need someone loving and encouraging to come home to.  (This works for hubbies also. tee hee)  Ms Philips was my angel and I will forever be indebted to her.  Within one year my son went from throwing around chairs and turning over tables in class to sitting quietly in his seat and learning.  THAT's how I know what she said really worked.  She proved it to me and I think if my teachers would just take the time to learn some about Aspergers, they can really help these students in their classroom grow.  The ones that others rejected.  It's easy to just say "put them in a self contained classroom" and leave them there.  But guess what?  I asked Ms Philips why there was such a huge difference for Chaz. She said that Aspergers kids tend to copy behavior.  Chaz was watching the kids around him do the same.  Once you put him in a regular classroom environment that was much more calm, he would be more calm.  Well, that explains a lot and that is why every year I have fought to keep Chaz from going back to a self contained classroom. 

When that school changed their principal and started to go downhill, that wonderful teacher left a year later so I had to once again relocate Chaz and his younger siblings.  To keep from bouncing them around I homeschooled a couple of years and searched for schools. Chaz did very well home.  VERY WELL.  This year, in 4th grade, once again he's been blessed with a wonderful teacher. I was nervous at first as she didn't know much about Aspergers. The first semester was very, very rough but she was so open to ask questions and do whatever it took to help Chaz that she earned his trust.  Chaz has been rejected so many times that he figured she would also.  Well, she didn't give up and just taught and loved him.  He now writes her letters telling her "Thank You" often.  I am so grateful to her.

You are your child's advocate.

Do whatever it takes to fight for your child. Don't just trust whatever you hear and just think they always know what's best for your child.  A lot is at stake.  When I first found out Chaz had Aspergers Syndrome I had very little support. In fact, I had people telling me I was crazy, that I was pinning something bad on my son and ruining his life, that my son just had demons, etc. The list goes on.  So if you are experiencing the same, know you are not alone.  Just keep fighting for you child.  How much you wanna bet everything is gonna be okay?  At home I am careful not to make Chaz feel different in any way from his siblings. He knows he has a love and support.  He knows we expect him to be responsible with his actions in how he treats others.  I tell my son Chaz that having Aspergers Syndrome doesn't make certain common issues impossible, just a little harder. Just keep trying.  If you fail, get up, brush the dirt off and try again.  :)

Monday, January 24, 2011

Asperger Blogroll

The growing blogroll is to the right on my sidebar.  Check it out! ------>

I would love to create a blogroll specifically for parents with Aspergers or Parent of an Aspergers child.  If you have an Asperger blog, please leave the link in my comments below and I'll be GLAD to add it! 

I found this one called Life With Aspergers!
An adult man with Asperger’s raising two children on the spectrum and describing life through his eyes. Humorous and matter-of-fact

Sunday, January 23, 2011

Misbehavior versus Aspergers-Related Behavior

How can I tell the difference between “aspergers behavior” and pure “disobedience” …I’m not sure what should be punished – and what should not?

Many moms and dads have a difficult time distinguishing between “disobedience” and “misunderstanding” in their Aspergers youngster. Because he may not interpret social cues correctly, it may be difficult for an Aspergers youngster to understand what is expected of him, and he may not understand the impact his behavior has on other family members.

So, how can parents tell the difference between “Aspergers-behavior” versus “mis-behavior”?

Most Aspergers-related behavior (sometimes misinterpreted by parents as “misbehavior”) tends to revolve around the child’s resistance to any kind of change. An Aspergers child is resistant to change for the following reasons:

• Has anxiety about a current or upcoming event (e.g. the start of school)

• Does not understand how the world works

• Does not understand the actions of someone else

• Has other issues like Attention Deficit Hyperactivity Disorder (ADHD) or Oppositional Defiant Disorder (ODD)

• Is reluctance to participate in an activity he cannot do perfectly or an activity that is difficult

• Parent or teacher changes a circumstance or rule that has been established

• Has the need for instant satisfaction and may not understand delayed gratification

• Has the need to control a situation

• Has the need to keep doing the activity that he likes (obsession or fantasy)

• Has difficulty transitioning to another activity (this is especially hard if the activity is not finished)

Any or all of these triggers can result in certain behavioral patterns that “look like” misbehavior (e.g., arguing, tantruming, refusing to listen, etc.). However, his responses to these triggers have more to do with anxiety and rigidity than his need to defy authority. He simply does not have the ability to understand the world like we do.

The Aspergers child:
• does not “take in” what is going on around him

• does not know how to “read between the lines”

• does not understand implied directions

• does not understand social cues

• needs explicit instructions

• will have difficulty understanding rules of society

Uncovering triggers for negative behavior is important. Keep a behavior diary, noting any events surrounding negative behaviors, the details of your youngster's responses, and any unintentional reinforcement your youngster receives that may be encouraging repeat behavior. The motivation behind negative behavior in Aspergers kids is often very different from other kids, which makes identifying the cause of those behaviors and developing a behavior treatment plan very difficult.

Many negative behaviors exhibited by Aspergers kids are a direct result of the condition. Parents, teachers, and professionals must consider this when developing behavior treatments.

• Aspergers kids may be unable to resist giving in to their obsessions and compulsions, and this is not a sign of disobedience.

• Because Aspergers kids have difficulty interpreting social cues and tend to be egocentric, they cannot fully appreciate what impact their behaviors have on others.

• Due to trouble handling changes in routine, a simple variation in schedules may be enough to cause a meltdown.

• Odd behaviors are not reflective of defiance and are not meant to irritate or annoy.

• Aspergers kids may exhibit a lack of common sense.

Moms and dads with an Aspergers youngster should receive professional training so that they can continue working with their child at home. Behavioral techniques are best when adapted to suit the home environment, and they should focus on issues directly related to home life and self-help skills while continuing with the goals established in school.

So when is the Aspergers child actually “misbehaving”?

Children misbehave for the following reasons (you can be pretty sure that the behavior is not Aspergers-related here):

1. To get attention. It is frequently noticed that when children feel a lack of attention, they get themselves noticed by their parents by resorting to misbehavior.

2. When they are disappointed. Sometimes, children get irritated and frustrated when things do not happen as per their wish. It is during these times that they usually misbehave.

3. When they test their parent's discipline. To check that their parents truly mean what they say, sometimes children misbehave. They check to see if their parent's will really enforce a rule or not.

4. When they want to assert their independence. Almost all the children hate being called a 'child'. To assert their independence, they often end up misbehaving.

5. When they have been previously “rewarded” for their misbehavior. No parent would ever think of purposefully rewarding bad behavior, but it subtly happens quite often.

6. When they copy the actions of their parents. The best teacher of how to misbehave or act and speak inappropriately is by watching mom or dad misbehave or act and speak inappropriately. Remember, what children see and experience in the home is what their normal is. So, if they see mom and dad yelling, they will yell. If they get spanked, they will likely use hitting to express their anger or frustration. If they hear, “What?” instead of “Pardon?” that is what they will use.

  • THANK YOU My Asperger Child for providing this much needed list.  I'll definitely being referring back to this.  :)

Pulling Information Together

In doing some research for a friend, I found this site where it gives you a list of Asperger Support Groups in different states.  This site is called:

It links to their list of support groups in different areas on the map.

Also, my friend has a son in the teens year which I have not experienced yet.  So I happened to find this article where someone wrote:

I would like to know what to expect from an Asperger’s child in the teenage years. My son was diagnosed 6 years ago. I know they say that they can suffer from this and that, but what is the long term goal, what can we expect, what not to expect?

You can click HERE to receive free weekly newsletters about parenting an Aspergers Child.

Friends, if you have any information at all about groups that fight for the rights of Aspergers, please, please leave me a link.  I am doing some research myself but would love to have a list I can keep on my sidebar.  As I find them or get them from you, I will began to add.  Thank you so much!

Friday, January 21, 2011

Are Social Sites Helpful or Harmful?

Chaz saw a mean mommy yesterday.   Apparently he was watching her real closely because later that night Chaz came up to me and said, "Mom, I don't care that you don't have a lot of money.  I just care that you are the best mom ever." and gave me a BIG hug.

My heart melted. 

Sometimes I think when kids have it good and they've been sheltered from the heartaches of this world, they don't realize what they have.  It felt so good to hear that. There have been times where the kids said I was mean because they had to do chores, go to school, eat their dinner, wear a jacket outside.  Little do they know that some kids don't have a home.  Even though some do, they go to bed hungry, don't have a coat to protect them from the cold, a parent that could care less where they are.  Some are scared and don't feel safe in their own homes.  Some make fun of their own kids for their weaknesses or maybe even disabilities. 

It's in the hurts in life that sometimes make us afraid to show our weaknesses and not be real around each other.  Because of internet, TV, movies, social sites, and video games, it's hard just to see a neighbor outside.  98% of the time I go outside, I don't see a single person down my street.  What happened to the kids gathering for a game outside, riding bikes, or just playing with their friends?  Sometimes I think it's so neat how far technology has brought us but then my heart is sad to see real honest to goodness relationships suffer.  I'm not talking about online friendships.  I mean the friends you can give a hug to, bring a meal to, or invite over for pie.  Is it we're scared to open up our real lives?  To risk them seeing our sink of dirty dishes and toys scattered across the floor?  That there is laundry baskets waiting to be put away? 

You know, inviting people over doesn't have to include a 7 course meal.  Homemakers By Choice once taught me that no one really cares WHAT you're feeding them.  They are just longing for friendship, fellowship, and hospitality.  Even if it's over chili dogs.  :)

You know, with that said, social sites have also done wonders in many other ways.  Such as bringing friends and family from far away together again.  Even old friends we lost track of!  It can be a blessing as long as it doesn't replace those around us.

Wrote The Little Boring Room on Meet Virginia.  Come and visit!

Thursday, January 20, 2011

I Dreamed A Dream

Susan Boyle - From Pain To FameDid you guys get a chance to see Susan Boyle sing I Dreamed A Dream?  Whether it was on stage for the first time or on youtube?  I was shocked as many were at her voice. What was SO FANTASTIC about it was the shock factor.  My heart went out to Susan as she came onto the stage and people were ALREADY laughing at her.  The judges were rolling their eyes.  Showing their bored faces.  She was being laughed out before she even got a chance to show her gift to the world.  So what if she was a little quirky.  In who's eyes?  We are all different in one way or another. Why is it so appealing to be just like everyone else?  Like another little rolling wave in the ocean?  Why can't we come with a loud crash?  Like, "HERE I AM!  I'M DIFFERENT AND IT'S OKAY!"  Susan came out.  Even when she was being laughed at she smiled.  She didn't waver or cry.  She just stood there and smiled waiting for the music to start.  She sang beautiful for the Britain's Got Talent, I Dreamed a Dream. Here is the video in case you missed it!  This is one of my favorite underdog stories of all time although there are many!  There are many great people who have Aspergers or may have had Aspergers.  Being that it is newly recognized, they realize there may be people in history who had Asperger Syndrome. Incredible people too!  I'm not saying she is. Just pointing out that no matter what anyone says, we should live our dream. Regardless of the laughter or people's opinion.

I Dreamed A Dream
In searching for famous people that MAY have had Asperger Syndrome, I found some more helpful information to understand my son Chaz.  The words highlighted in yellow sound so much like Chaz.  (Scroll down on the web site I provided to see list of famous people.)

More specifically, the pediatrician included aspects of difficulty to include social skills, friendship skills, conversational skills, pedantic speech patterns, tendency towards ego-centrism and preoccupation in a particular area of interest, lack of emotional control, and an immaturity of empathetic skills. These children were noted to have difficulty attending in class and demonstrated learning deficits, along with organizational, motor, and sensory concern. The difficulty in understanding and acknowledging autism, primarily high functioning autism or Asperger's Syndrome, by the medical, psychological, and psychiatric community, can lead to misdiagnosis and even failure to provide the services needed for students (Autism Today, 2007).

I learned that Chaz is who he is.  He doesn't need to be cured.  He needs acceptance.  I need to praise him 10 time more than I correct him.  If he's doing something the right way I should point it out to him and encourage him!  Being that I have ADHD myself, I've learned that are certain gifts that come with some disorders.  Aspergers is another one of those. It has some tough areas, but they have gifts too.  Susan may not have been the picture of what people think is visually beautiful, but she is a diamond.  There is a standard stamp people tend to put on what is socially acceptable.  Chaz is a gift to me because he made me realize that we don't have to all fit in the same mold.  Thank God for that.  Don't worry about just going with the flow, Chaz.  Make a splash!

P.S MP3 of I Dreamed A Dream.  Beautiful song sung by Susan Boyle.

Wednesday, January 19, 2011

Ask An Asperger

I got a chance to chat with an someone who would like to remain anonymous as she is an author.  I was so grateful to her for sharing this with me.  Thank you so much, to you know who, for talking with me, answering my questions, and bringing insight.  I hope I kept this as anonymous as possible. Sadly, people can be judgemental.  Hopefully this can help you to understand some things Asperger people go through.  She had Asperers before it was ever even diagnosed so her struggles were not explained till later in her life.  Thank goodness we can find out early of age now and start young to improve their lives.  :)  I know it has mattered for Chaz.

BTW, I kept the chat exactly as it was so I apologize if parts of it are hard to read as we were just typing fast to each other and not worried about perfecting it.

Anonymous Asperger: when i was so little, 4 in 1st grade i stayed to myself at private school.  i was a runt, and picky eater.

Me: since I started Asperger Moms, I'm telling you....so many write saying thank you, thank you, thank you for giving us a place to talk to each other. ask questions. .

AA: I did not like spaghetti like most, it reminded me of worms..

Me: yeah, Chaz is smaller.  :).  I have to always encourage him to eat.

AA: I was a colic baby

AA:  that is a big sign right there.amen. that's proof of who we are.and we are good with children, and mean to mean ones when we are little.we see things others don't, insight.so we are quiet. we feel as if we don't belong.we feel like aliens/alienated..

Me: So, believe me, so many moms need help and understanding. Have you joined a group? So many ask questions but you have the ability to answer many of them. I will get you link.

AA: i am still a loner.

AA: as we get older we are stronger in who we are, accept it and we don't need like others do.

AA: most get diagnosed by 4 yrs. old and younger. thank you, i joined those links..

Me: Chaz was 5. I didn't know why it was SO hard and a social worker brought the idea to me to have him checked out. It was a relief for me.

Me: people have answers as to how to help but I only know from an outside view. It is great to talk with you now that you are an adult, growing up with Aspergers.  You understand what it is like and how families and school can help.

AA: everyone has ups and downs. and their medicines give chemical lobotomies..

Me: You should start a fan page called Ask an Asperger (I mean, seriously, she has insight because of her own personal experience).

AA: well, if they ask, you have permission to send them my way, and i can only tell them about me and what i know. omg. it may ill effect other things i do, as many see it as being incompetent..

Me: Really? I see.

AA: but you can blog it, "ask an asperger," then you can refer them to me.so long as they are aware that i may be judged, and that is how they can ask me, via you.they can message my site here..

AA: we don't have special needs, we are special..

Me: Yes, exactly. :).

AA: i am my mother's favourite. she said she always had to keep me busy with so many things, hobbies, so i would not get bored and become reclusive she wants my brain to work all the time. it helps.but balance, diet, etc. is the key.believing in one's self..

Me: Can you explain the diet?

AA: she had to take my barbies away in high school .no corn syrup.juice not from concentrate.sugar is better than corn syrup actually.organic things.lots of veggies.lots of greens..

Me: what about red dye in foods?.

AA: I hated them as a kid (veggies), and hated green beans. now i love it all, became a vegetarian at 13. i steer clear of preservatives and cr*p.i don't use dairy.i use rice water.okay, if i am hungry, for a snack i use natural chicken in a can, with best food mayo, it has no corn syrup, other do if you read..

Me: Thank you, I will look into that diet..

AA: i don't use a lot of bread, but if i do, to keep weight on, i use it with no corn syrup.  Also, no stimulants at all.no coffee, no tea, no nicotine, no soda pops.water, juices rice water..

Me: Well, he is also ADHD so dr told me to sometimes give him coffee to settle him down..

AA: i replied a little to that, but felt kind of stupid..

 Me: what do you mean?.

AA: he's wrong, he is not that.we are hyper to most.we really have so much to share and say, and it can't all come out at the same time.most say, that now, i am making up for lost time, in that i talk so much now..

Me: that's how he is! He talks soooo fast to get it all out that I have to tell him to slow down..

AA: lol.but others say, now she has something to say.some stutter because of that, my twins did, but slowed down a bit, if not too excited when speaking.. (She also has Asperger children and grandchildren).

Me: Yeah, he stutters sometimes because of it. In Children's church, he is pretty immature for his age so the older kids look at him funny and tend to stay away. Makes me sad..

AA: gramps gave me coffee in a bottle with milk and sugar, but very little. it was European for hyper rather than ritadrine.i even now sometimes can stumble over my words. but most times we speak as little scholars, if listened to.oh, wait till they see him blossom, and come into his own, they will fear him.most fear me, and don't know why.they get intimidated.we don't like to be cornered, we don't like being told what to do, we don't like being told we can't do something-we will prove that wrong.and we don't like no..

Me: Thank you for talking with me. I really needed it. I have over 600 friends that are either Aspergers or have an Asperger child on facebook account.

AA: most say where did you get your accent, united kingdom??? Australia? we speak so fast in our dialect.my mother understands me, but sometimes she will tell me to slow down. smiles..

Me: I have to tell Chaz that. :)

AA: when we get to teen years we run away. also we become suicidal ideation-a way to run away from problems we can't handle, not mature enough, we are not depressed or sad, we just run from it.i don't have the nervousness/anxiety any longer, and no meds.the only great medicine and it's not benzo....

Me: Yikes, that is scary. But I am not surprised at all because I deal with these issues with my son.  I try to encourage him a lot and buil up his self esteem.

AA: is klonopin, chlonazipam, but not over prescribed..

Me: Chaz has talked about hurting himself a lot before.  But there had been a lot of rejection in school he was attending.  I moved him to a different school and he is doing much better.

AA: it helps with autism and seizures due to it. no more lamictal and cr*p you don't need. just one pill a day.and have his thyroid checked semi-annually.we have those problems..

Me: Thank you for chatting with me. :) I really needed it.

Monday, January 17, 2011

Asperger Moms

One day I was sitting at home wishing I could connect with other moms of Asperger kids.  Then it dawned on me that Facebook is one of the most perfect sites to connect.  So I started a page call Asperger Moms and to my surprise, many parents, even aspie's themselves connected with me.  Many have said "thank you so much for starting this page where we can meet and talk together."  It was more of a personal page so then I decided to create a group called Asperger Moms so we could talk with each other rather than only connect with me.  This is a great place to ask each other questions and encourage each other. 

But then some said they didn't like it always being about how Aspergers was negative.  So then I started the page Celebrating Aspergers! 

I love logging into my account and seeing so, so many posts all having to do with someone who somehow has Aspergers in their life.  No, it's not all negative.  Mostly people sharing their stories and experiences with each other.  An Asperger diagnosis may be shocking at first.  Mind boggling as to where to go from the initial diagnosis.  But Aspergers has taught me so many things.  Celebrating Aspergers is a great place where we've been able to share just how much Aspergers has changed us for the better.

Claudie says "Max is a friend and has Asperger's. His gentleness and bright intelligence makes you feel like hugging him. He does not like hugs but he loves to talk about his las discoveries. I am always amazed by how much he knows, about his ambition. He cares for his little sister with autism, he is respectful with his parents. He... is only 14 but he has a wisdom and tolerance of others that is grand. He is making the world better by being kind and patient, by wanting to learn and apply sicience. He gave my career a new turn and I am grateful for all what he taught me. Thanks for this wonderful page."

I find myself logging into Asperger Moms so much more than my regular, private account because it's rewarding.  Thank you, friends. 

Saturday, January 15, 2011

The Talk

Guess which talk I'm talking about?

The one that starts with "Chaz, do you know what Aspergers is?" 

It all started when Chaz walked up and started reading some stuff I was researching.  He's 10 now and we've been waiting for the right time to talk to Chaz.  We are NOT ashamed at all of Aspergers but Chaz has been through a lot and has had some serious self esteem issues.  I waited to see him mature this year where I could really talk to him about it and him really comprehend what I was saying.  Tonight was right.  I asked if we could talk so he followed me.  I had a hard time starting off.  I asked him about some things he has a hard time with and he rattled off 3 or 4 things and said it just frustrates him so badly sometimes.  I told him about Aspergers and a very short version of what it is.  I told him how it was linked to the issues he was speaking of.  I told him there are many positive things about Aspergers and he is extra special.  In fact, the teacher says he is really, really smart.  Just has a hard time concentrating.  He said he thought he was just dumb.  No way was my response!  He asked me question after question.  He was smiling the whole time and it went much, much better than I had expected.  After I thought we were all done talking, we both walked out of the room together.  Chaz walked up to his dad and said "Guess what, Dad!  I have Aspergers!" with a big grin on his face.  Then he took me by my hand and asked if I would talk with him again about it.  I sat and played Legos with him while we talked about it.  It made it much more relaxing.  Some times we would talk and some times we just built stuff quietly together.  It was really nice.

SO, SO, SO much has changed in the last year for Chaz and I.  It HELPS SO MUCH to find the right school.  Schools he had been to in the past made him for terrible about himself and they always made him feel like he was just a bad kid. This is why I was so frustrated and homeschooled him eventually.  I just grew weary of schools taking his IEP funding and not helping him.  Only making him feel worse.  In fact, he was getting further behind in his schooling because the teachers were punishing him more than helping him.  He was even really depressed up until attending this new school.  When I brought him home to homeschool for the 3rd grade, I was hoping to get his caught up and back on his feet again.  Sure enough, he did really well and was ready to go into the 4th grade this year.  He is doing fantastic.  Found the right school.  Right teacher.  Right classroom (that was lucky).  What happens when he has to change teachers?  Chaz is worried about this but I assured him that Mrs. D will be right next door and he'll have the same principal and same counselor.  I'm definitely NOT moving him.  He's been to way too many schools trying to find the right one.  If I knew then what I know now, I would've done much more research before just placing him in the nearest school.  Don't be afraid to not only call and ask about their services, but to also request a personal meeting.  Ask them what they offer.  Don't let them just take the extra funding without them actually helping.  I learned this the hard way. 

Chaz has been through a lot of emotional ups and downs.  My husband and I talked and talked about when the right time was. If only I could have been blogging about my journey from the very beginning.  5 years ago you would have seen lots of tears.  Insecurity.  I was distraught. NOT because I was ashamed.  No way!  Chaz is the best thing that's ever happened to me.  I just knew that underneath it all is one smart kid who just needs a chance.  He needed someone to fight for him and pull him out from the fog.  To show him that just because he has a hard time concentrating doesn't mean he's dumb.  Just because he stutters, doesn't mean no one wants to listen.  His mind just thinks too fast for his words to keep up.  That he's not weird for covering his ears when it's loud.  It's just noise is extra sensitive to his ears.  He's one of the only kids on the bus with a cool MP3 player to help cancel out the loud noise.  Beat that!  He also found out tonight that his friend also has Aspergers.  Can you believe that the one friend he meets at school and really gets along with also has Aspergers just like Chaz?  Well, Chaz couldn't believe it when I told him.  It thought that was pretty darn cool.  In the beginning I cried because I didn't know how to help Chaz.  He is so incredibly different now than when he was first "diagnosed".  If I hadn't of gotten help, I don't know how we'd be doing today.  You would not recognize Chaz he has come so far.  He went from a kid that rolled all over the floor, bit his teachers, threw tables and chairs, screaming.... to a kid that can sit in a regular classroom, take tests, play with other kids respectfully, and stay on the same level as his peers and even beyond.

In the beginning, the news of Aspergers might be hard to take.  I promise you that as time goes on and routines come, it's not something to be sad about.  It's kind of like having a baby bird learn how to fly later than the rest.  It might take them longer but with some extra special attention, they will soar.  It is much better to show them how rather than keep them in the nest and telling them they'll never be able to fly.  Aspergers is NOT the end of the world.  Just the beginning of another one that not many have the privilege to experience.

Speaking of..... Chaz asked me tonight if I could get him some noise cancelating headphones for him. I did some research and ran into THIS PAGE.  I'm definitely going to pick one to order soon!  Chaz hates riding the bus.  He is starting basketball season again so he is super excited!

Thursday, January 13, 2011

Importance of an Early Diagnosis

I was reading on Wildeman's Words about why a diagnosis is important.  Autism: Why get diagnosis?

"Early diagnosis is especially important for our children. Sure, they may not be having difficulties now, but as they get older and life cycles change, they may need the additional supports that are available to children on the spectrum. Studies have shown that early support is more successful than waiting until later. You can find such reports in most medical diagnosis for all kinds of conditions."

It's true!  I still remember getting the call from kindergarten.  We were celebrating Chaz's first day of school by going to a restaurant with parents who's kids also were starting their first day.  By the time we were done eating breakfast and I got home, we already had a message waiting from the school.  Chaz bit his teacher and we need to come and get him.  You're kidding me!  Now that I thought about it.... I had enrolled Chaz in a tougher school.  The kindergarten room didn't even look like one.  Remember the toys and pictures on the wall?  A friendly place?  This one had plain tables and white walls.  There was nothing to look at. Even the teacher was serious.  The next day the school calls again.  This time Chaz kicked a teacher and then ran away.  He ran right into a metal door and split his head open. Chaz wasn't even crying when I picked him up from school.  He walked towards me with a split forehead.  You could even see his skull it was that deep.  He just said "Hi, Mom" and got in the car.  As we were driving to the hospital, I was trying to figure out why my son was having such a hard time. They told us that it's only Chaz's second day and he has two strikes.  3rd time he's out for good.  There was no way I was gonna put him in the third day.  I was at a loss but enrolled him in another school.  This time a friendly looking one. The school calls right away and says Chaz is rolling all over the floor and won't sit in his seat.  This goes on all week.  What's wrong with me?  Was I that bad of a mom that I couldn't even train up my child properly enough that he could sit at a desk in a class? 

One day the school counselor walks up to me and hesitantly hands me a packet.  He tells me about Asperger Syndrome and thinks that Chaz could possibly have it.  I think he was worried about offending me. I wasn't offended.  More relieved.  I read his packet at home and it was like reading about Chaz.  That's when I called to set up his first meeting. 

On the way to the doctors Chaz asked what kind of toys might be there.  "Do you think she has toy soldiers?" 

"Maybe", I replied.

When we got there, she didn't have toy soldiers. But she had lots of other toys!  He asked me where the toy soldiers were and I said there wasn't any.  He started to get upset.  He cried and asked why I said there was toy soldiers when there wasn't.  For the entire hour that the doctor and I talked, he was looking for toy soldiers and asking me why I said there would be some.  He grew more and more upset and eventually crying.  I probably didn't look too good that day.  I was at my whits end and extremely stressed out.  Sad.  Anxious.  She said from everything I have shared about the last 5 years of his life and from what she is seeing in the office, he definitely had Asperger Syndrome.  Of course later I would get several other opinions just to make sure and they all matched up. 

It saddened me but then I was also relieved.  It explained SO much .  I wasn't a bad parent.  Chaz needs help.  Needs understanding.  Patience when working with him.  Now we were able to move forward. 

Ever since then it's been a journey.  We looked for schools, homeschooled, looked for schools again.  I've had many bad experiences and things I wish I had never done.  Such as putting him in a self contained classroom where he copied the behavior of other kids.  He would throw tables and chairs.  Yell at everyone.  Later I learned that was a bad idea. You  never put them in a classroom where they will copy those behaviors.  Ever since then he's been in a regular classrooms. I've had schools tell me they don't believe in Aspergers.  Schools that refuse to help him in any way.  One year I learned that he was placed in a desk outside the classroom in a white hallway.  He could only view his classroom from there. I didn't not find this out till the end of the year.  Boy was I furious. This is why kids were calling my son a freak.  That is how the teacher treated him.  I had no way of knowing because the school would only let you make an appointment to visit your child.  You could just walk in and see this going on.  You had to schedule at least a week in advance to visit.  I've had good and bad experiences and so it has been a challenge finding the right school for him.  I finally found the right place and it's taken 5 years.  They've one above and beyond to help Chaz.

Fight for your child! Don't just trust anyone. Communicate with your child, the teachers, the principal.  If you don't fight for him/her, who will?  Don't let them intimidate you.  Especially if your child has an IEP, that school gets extra funding to help your child and work with you.  If they won't, take the funding elsewhere to another school that deserves it and will work well with you.

21 Things Not to Say to a Person with Autism - Literally

I ran into this on a website.  This is from Laura Shumaker and I wanted to share with you!

Here is a list of 21 things NOT to say to a person with an autism spectrum disorder.
1. Shame on you.

2. How many times do I have to tell you?

3. Maybe (or maybe next time).

4. If you are good all week, I'll give you blah blah blah.

5. What is wrong with you?

6. Focus.

7. It's not loud to me.

8. I told you yesterday.

9. Wait just a minute. (Unless it's truly just a minute)

10. I promise. (Unless you are absolutely sure you can do what you are promising.)

11. It's not a big deal that your Pokemon cards are out of order.

12. Look me in the eye.

13. Stop obsessing.(It's like saying "stop breathing" to a child with autism.)

14. Idioms of any kind, such as "It's raining cat's and dogs."

15. Shhh! You need to be quiet in here. (The guaranteed response to that is, "BUT I DON'T WANT TO BE QUIET!" at max volume.)

16. You need to wait.

17. You'd better behave.

18. Look at me when I am talking to you.

19. "Go ahead and ______ . See what happens." (sarcasm, however slight, is bad. Autistic or not. )

20. It doesn't matter, you still need to...

21. Do you want a time out?

Read more: http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=75919#ixzz1AvS0l0cD

Interesting, huh?  I think I'm guilty of using many of these phrases.  If I say "Maybe" to Chaz, he hears "yes".  When Chaz was little, I used to say "Chaz, look me in the eye".  He had such a hard time with it and even got in trouble with that at school.

Do you find that these phrases can be confusing for your ASD child?
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