Things about Autism you may not know

A friend of mine asked me today, "Seems that it [Autism] affects more kids than cancer, is that correct?"  My answer to her may shock you.  Did you know...
This year, more children will be diagnosed with autism spectrum disorder than AIDS, diabetes and cancer combined.
I know, right?!
**Autism now affects 1 in 88 children and 1 in 54 boys.  That means more kids on the spectrum compared to type 1 diabetes – 1 in 400; childhood cancer – 1 in 2,000; and cystic fibrosis – 1 in 3,500.  Yet Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
It 2012 the total NIH (National Institutes of Health Funds Allocation) budget was $30.86 billion.  Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding!!
Autism prevalence figures are growing.  

• It is the fastest-growing serious developmental disability in the U.S.  
• It costs a family $60,000 a year on average.  
• Boys are nearly five times more likely than girls to have autism.  
• There is no medical detection or cure for autism**

When asked what my thoughts are on what causes Autism, I say this; to me, the cause is irrelevant because it will not change his diagnosis.  I have my theories (vaccines is not one I believe), but something definitely needs to be done to prevent more children and families from being diagnosed.  What I need to see at this point is a cure, but with funding so low, how will we ever see the day Autism is cured or prevented.  This is why AWARENESS is so important.  And this means kids too!!  Kids need to be aware and taught tolerance, compassion, patience and understanding.  Because MY kids will grow up with neurotypical kids.  And so will many more kids on the spectrum.

**resource:  Autism Speaks website

This too shall pass...

Honestly I don't know what it is.  I don't know if it's the holiday rush, the excitement of the holiday season, sensory overload or what, but 'Milo has not been a very good listener at all.  Last Monday he started being distracting at school again and was on and off all week, but on Friday he called a boy in his class a loser...not once, but TWICE!  Even after being talked to about it the first time.  Over the weekend we had planned to go see the Dino movie on Sunday.  Just me and him since little bro has no interest in the movie.  But with that going on at school on Friday I told him if he kept acting up we wouldn't go to the movies. Saturday he was OK; still being loud and very silly.  Don't get me wrong, I'm all for being silly, but when it gets to the point of not listening and calling everyone names (me included), it's not OK.  And I'm no push over when it come to this stuff.  I love my kids, we have fun, I'm very affectionate with both of them, but I am stern when it comes to this behavior.  If I say I'm going to take away games or toys because of behavior, I stick to it.  If it's time out, then time out it is.  I'm rarely lenient with this stuff.  Saturday night I reminded him again and by Sunday morning I came to the conclusion we would not be going to the show.   I was still going to take the little to grandma's for his lunch date with her, but me and 'Milo came back to the house and did chores.  I felt horrible, but I stuck to my guns.  He knew I was upset.  I didn't say much to him, told him to make his bed and left his room.  Sometimes silence is louder than words and more effective than a heavy hand.  I limited my interaction to just answering his questions with short answers.  He was settling down and apologized for behaving badly.  By the evening he was getting noisy and acting up again.  I had to remind him again and ended up taking away Legos.  He seems a little settled again today so hopefully after this holiday bustle he stop bouncing off the walls!

The road ahead

During the evaluation on Wednesday it was suggested that ‘Milo’s pickiness to food was a behavior issue and not necessarily a sensory issue.  They said it may be a behavior he learned to get what he wants.  I have my doubts about that; parents usually know their kids best, but I am not oppose to trying techniques they suggest if it helps him overcome his food issues, whatever it may be.  This is the process I am most concerned about.  How will he react?  How much will they push him?  When will they know if they are right or wrong?  I know that kids react differently to different people, even differently when it’s mom or dad.  I am loving and caring, but strict.  I give hugs and kisses, but also discipline.  I know he is aware of right and wrong.  Just the other day ‘Milo’s teach said he was very disruptive in class.  Especially during singing practicing.  He said 'Milo was laughing and being very silly.  When I got home I told ‘Milo that I was not happy with his behavior in class.  I said when his is distracting that it keeps the other kids from focusing on their work and learning.  I told him he needed to write an apology letter to his teacher.  He did.  He wrote he was sorry for not behaving in class, and he gave the letter to the teacher the next day.  He came home that day and the teacher had said he had an EXCELLENT day.  He was very impressed with his behavior.  Things like this tell me that he is aware and can get thru the day exercising appropriate behavior.  I have no doubt that some of these issues are behavior… as I told the people we met with, afterall he is a 9 year old boy.  But I also want to give him the benefit of the doubt and I don’t make a practice of using Autism as an “excuse” for him to run a muck.  ‘Milo has great potential I know it.  I’ve seen it.  I am sure that some of these actions out of frustration happens so fast that before he’s realizes it he’s made a mess or starts to meltdown because he will say after, “I hate it when I’m crazy”.  And at those moments I tell him, “you’re not crazy.  You just need a better way to work out your frustration and learn to calm yourself”.
Thursday when I got home from work the first thing he asked was if he could check his dinos on the iPad.  My mom said, “you have to see his room”.  He had had time out and did not like that and proceeded to throw toys all over his room.  I told him that he would have clean his room and finish his homework before checking his dinos.  He did.  He also told grandma “I genuine apologize for not behaving”.  (smile)  Later that night I talked to him a bit about the meeting we had with CARD (which ‘Milo was required to attend) and I told him that people will be coming to the house to help us figure out a way to work thru those times he’s frustrated.    I told him that they would also be helping him to try new foods… he made a little face and I said this will be a good thing.  I told him it will be good for all of us so we can all learn to help him work thru times that make him upset or frustrated.  He smiled and said OK.  I’m expecting this is going to be a rough road.  The people we met with on Wednesday said it could very well get worse before it gets better because they expect him to be resistant to change.  I think that is the part that weighs on my heart the most, is that he may/will get upset.  I am trying to stay positive and hope this will not be as hard as I am making it out to be in my head.

And so it begins....

ABA process is in the works.  Below is some info on what exactly this is, but in short, a team will come to the house for observation and help strategize to reduce problematic behavior.  Many of you who know 'Milo personally may say, he's well behaved and well mannered.  I do not disagree, when we are out he does very well.  His social skills have improved so much and his interaction with people is great.  Other than making direct eye contact, he does well holding a conversation now.  But at home when there are things that he is struggling with or just challenging authority (as all kids do at times) it can lead to meltdowns, excitability, uncontrollable laughter or lack of focus.  As a parent, it can fell like YOUR under the microscope.  YOUR parenting skills are not up to par.  YOU need to learn how to control you kids from outsiders who don't even know you.  But it really isn't' about the parents, so you have to really not take it personally.  Trust me, I know I'm a good mom.  And part of being a good parent is knowing when to be vulnerable and allowing others to help.  Both my kids are respectful, polite, and well behaved, this I know.  This is not a decision I made lightly, there is a lot of commitment in this.   I have struggled for the last two years wondering if this is the right thing.  At this time, I feel it is. 

ABA RESOURCES: WHAT IS ABA?

What is ABA TherapyBehavior Analysis is the scientific study of behavior. Applied Behavior Analysis (ABA) is the application of the principles of learning and motivation from Behavior Analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. Many decades of research have validated treatments based on ABA.

The Report of the MADSEC Autism Task Force (2000) provides a succinct description, put together by an independent body of experts:

Over the past 40 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:

    populations (children and adults with mental illness, developmental disabilities and learning disorders)
    interventionists (parents, teachers and staff)
    settings (schools, homes, institutions, group homes, hospitals and business offices), and
    behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury, oppositional and stereotyped behaviors)

Applied behavior analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior (Baer, Wolf & Risley, 1968; Sulzer-Azaroff & Mayer, 1991). **resource: CARD website**

Division sucks!

Well, not really, but it sure is hard trying to explain to a child with special needs. I am not a teacher, and just don't know how to explain the homework in a way 'Milo will understand sometimes. One afternoon we ended up getting frustrated with the homework and each other. Then I just feel horrible the I let it get the best of me. After our mini meltdowns I sat with him and told him I'm sorry that I couldn't explain it better to him. He said he was sorry he was having a hard time and I told him it wasn't his fault. We sat on the floor to take a break and gave hugs. Then he said he wanted to try again. So we set up at the table again and gave it another shot, and we push thru and got it done. When at first you don't succeed...

Holiday rush is in full swing!

I went to an Autism support group last Wed at CARD (Center for Autism and Related Disorders). The topic; Handling the Holidays.
Most of this information is basic whenever routines change. But with the busy rush of the holiday season, it's easy to forget to slow down and take that extra step with our kiddos on the spec.
Some of the tips include:

• Role play with your child to help him/her understand the social expectations ahead of time. (shaking hands, greeting, new people)
• Have a safe place and have a relaxing activity on hand. Maybe even create a secret code that your child can say so you know they need a quite place.
• Find a way for your child to contribute to the holiday (help decorate, frost cupcakes, set the table)
• Make sure their dietary needs are met.  Explain to a host that your child has specific needs when it comes to food and that you'll bring something for your child.     

Meltdowns can be caused by too many or rapid changes. Give your child time to process the changes to the routine or environment. If a meltdown happens try to use a calm soothing voice. Try not to overwhelm your child with lots of questions or offering lots of choices. Use fewer words to decrease confusion. Most of all, be patient! Easier said than done sometimes, I know! But these few tips can hopefully make the holiday season a bit less stressful.

"Brain Brain Medicine"

Taking his "brain brain" medicine. It's actually an Omega supplement that supports brain and visual function. I looked into it after my cousin said she gives a similar supplement to her son. The only one I could find has a strawberry flavor and smell to it. But 'Milo HATES strawberries. It took him the longest time to take without gagging. But he finally will take, even reminding me at times before he goes to bed. We use to give to him in the morning, but he refuses now and will only take at night. He will not touch it or let me place it in his mouth. He will only take if I put it on the counter and he picks it up with his mouth. But not before I place a glass of water ready for him to wash it down with. This is one of our rituals. Hey, whatever works.

Legos!

My son is Autistic and he LOVES Legos!  

I love them too 'cause they are great for those fine motor skills, sorting, and just plain fun :)

 

First we sort...

 Fine motor skills hard at work!  The thumb and index finger combo can be tricky for him... but he's getting there

 Mission complete!!  

Cool, a truck too!

Oh that face! <3

There's no such thing as throwing in the towel

I'm determined have a good day or even a so/so day, because I don't feel like I ever have a "bad" day; not to say there aren't bad moments in the day, but I won't let those moments rule the day!  That might sound very "turn that frown upside down", but my emotions are on overload as it is without some episode ruining the whole day :)  I must say though this morning was tough and I was just about in tears.  Scolding your kid first thing in the morning is pain-staking, gut-wrenching, and heart-breaking.  But time was running out and we had to get moving, even if it meant literally dragging 'Milo out of bed and guiding him through the hall to the restroom and then into the den to get dressed.  All the while he's yelling and crying and begging to go back to bed.  And trust me, I'm not waiting till the last minuted to get him up; I am in there by 6:15, starting to talk to him, gently nudging, persuading him to start getting up, even though school doesn't start till 8.  But time goes quickly in the morning and I have to get me and them ready, and if they aren't dressed by 7 it throws off everything.  But even after all that, and once we got to the den to get dressed he had calmed down enough to dress and start the day.  It's like a switch is flipped.  Like nothing happened.  All of a sudden, calm.  

No one said it was gonna be easy.

Make the Apps work for you!

Earlier this year at work, we all got mini iPad as an appreciation to all the employees.  Exciting 'cause I always wanted an iPad but just couldn't justify spending the money for something like that.  So a FREE one was so appreciated.  The boys of course were so excited because every stinkin' commercial on the kid channels promote App for iPads!  "Mom can you download this app?", but all the apps are games.  And of course those angry birds!  But they love it and even through it's OUR iPad, they don't spend a ton of time on it and if I'm going to be downloading apps I'm going to get some that are fun, useful, and use as motivation!  I found this Jurassic app that is great for motivating 'Milo, especially in the morning!  Once he's up and dressed he can check on his Dinos (one of his favorite things!)  He collects money from them, feeds, them, uncovers new amber for new dinos, and keeps them safe from the storm.  This is a good one for his hand/eye coordination and his motor skills.  He has to keep all the dinos in their cages for a 2min time limit and if he doesn't hit all the red dots before time runs out, the dinos escape.  But the longer you take, the more money

you get so you have to get it just in time.  It's a good little reward system.  I'd much rather reward for good behavior whenever possible.

One of those days...that lasted all weekend.

Pretty difficult day today.  The 100+ temps and humidity didn't leave much for us to do, on top of my mom just having surgery on Friday, we've been pretty much cooped up most of the weekend.  Today I decided going to the movies was in order.   I've been so busy this weekend, that it just occurred to me a few hours ago that it's already Monday.  'Milo was extremely goofy at the movies, much like he's been all weekend.  So hyperactive.  It finally wore me down this morning and I just broke down in tears.  But who couldn't use a good cry now and then.  Even now as I write this, he's been up out of his bed three times.  He gets very excitable; screaming and shouting, laughing, jumping, banging the furniture.  It's very exhausting because when he gets like this he does not listen, it's like he's not even hearing me.  I don't know what triggers him to be overstimulated this way.  I don't ever want to get to the point of medication.  If I can figure out the triggers, then I can hopefully defuse these episodes.  My cousin gave me some herbal soothing tea that helps her son, who is severely Autistic.  I was able to sneak in a bit in his juice at dinner time and he didn't seem to notice.  I think I'll try some more tomorrow for him and increase the tea a bit.  We'll see how it goes.  He finally feel asleep, so at lease for now, the house is quiet.  

Bed Time Blues

E started to get upset when it was time. Had to repeat several time to brush teeth and go to bed and even had to raise my voice, but kept myself calm. Held my hand out to help him off the floor. We walked down the hall all the while he complained, pinched me, yelled at me, but I stayed calm and quiet. Wouldn't brush his teeth so I did it for him, not saying a word. Walked him to his room and tucked him in. And then at the end, still in a whiny voice, he said, I'm sad. I said, why are you sad son? And he said, because I'm so sorry. Well that just melts my heart! I said, that's ok we all have a bad day sometimes, thank you for being sorry. This means the world to me as he's starting to recognize his actions AND more importantly his emotions. These realizations really defused what could have been a long night for us. I'm grateful everyday that progress is possible!

Soccer

I think I’ll always worry about E getting picked on. I know some kids are more prone to it than others, and some kids handle it better than others.  But I know he’s different and sometimes kids, mean kids, seek out “easy targets”.  As he’s gotten older, I can see his peers are less tolerant of his behavior.  Well, maybe they just don’t understand it and that’s why.  Doesn’t make it right, but it’s just what some kids do.  It’s important that parents, and it’s up to parents, to let their kids know that everyone’s different and that’s OK.  In his class, he blends in because he’s in a class with other Autistic kids.  They are supervised outside the classroom as well so I don’t worry about too much at school.  But being out and around others I can see how others perceived him as…. hmmm, rambunctious, for lack of a better word.  Sure lots of kids are, but at 8, he’s probably not as matured for his age as others. 

I can see it sometimes around other kids his age.  He’ll begin waving his hands in front of his face or do his little grunts and the kids just look at him.  He’s not always understood when he talks because of his Ankyloglossia (commonly known as “tongue tie”, a congenital oral anomaly which may decrease mobility of the tongue tip).  And when he’s anxious about a situation, he doesn’t handle it so gracefully.  He rarely has a meltdown in a public place anymore, but he will become less focused, less cooperative and just plain ornery!

So in getting ready for the soccer game last night I was already worried that game time for him was gonna be a bust.  He insisted on getting himself ready, which I like to encourage, but we were running late as it was.  The soccer socks are tight and takes some patience getting on and he won’t let me help.  The laces on his shoes are shorter than his regular shoes, so he can’t make the big “bunny ears” he’s use to on his regular shoes and he wont let me help.  With all the struggling he gets frustrating so the grunting, the hitting and yelling begins.  But we managed to get in the car with just enough time to be on time at the park.  In the course of the drive he starts pointing out little things like, “there’s a driveway”… just little things like he’s trying to break the tension in the car.  Then softly he says “I hate it when I’m crazy”  Aww, that just broke my heart.  It was like he was aware of his actions and didn’t understand them or know how to deal with it.  I said, “I know buddy.  It’s OK.  We all get frustrated, we just have to learn to be patient and calm”.  And just like that, he was back on track and ready for game time. 

This year he was giving his all.  Last year was his first year and so he was just starting to learn the game, but spent more time chasing his shadow during the games.  But he did try and had a great time.  But this year I could see it was different.  He’s really tried to do the drills he was taught and paid more attention and RAN his little butt off during the games.  And on this very day where all was spiraling downhill just before leaving the house he was having a great time playing.  He even gave the ball a good kick and was very pleased about it!  I could see him looking at me from the field as if to say, “did you see me kick the ball!!?” with a proud little smile on his face.  I gave him a thumbs up (that’s our sign for “good job!”).  At the half all the kids came in for a water break and pep talk from the coach and as E sat down for a rest another little boy said, “E, good job!” and gave him a thumbs up.  I thought I was going to explode in happy tears!  He said, “thanks” and I was thrilled.  Not all kids are mean.  That was actually a meaningful acknowledgment and I was so proud of him for doing a great job.  Another game the same boy told him “E, that was a good kick!” and it’s just made me feel that this kids was making a real effort to make E feel part of the team and proud of his efforts he made.

At the end of the season, we had a bowling party for the kids and guess who got the highest point of all the kids!! Yes, E!!  It was so neat to watch the boys giving him high 5’s and telling his what a great job he did.  He’s very excited to play now more than ever, so if he wants to continue playing I’ll continue supporting him. 

Rewards!

As a parent I already know that rewards are a good incentive for kids.  But when you have an Autistic child, the concept may be a little difficult to understand.  E has been pretty good about it, but still we all have our days.  I try to teach both kids that everything has consequences and they can be good or bad.  I think some people relate consequences to being a bad thing, but in reality, a consequence is just a result of something.

Since the time change, E had been acting out.  Like, really bad meltdowns... doesn't want to get up for school and would have to prompted thru the whole morning routine while kicking and screaming.... fun first thing in the morning, right?  Then when it was time to go to daddy dinner, or daddy weekend, it was the same thing, kicking, screaming, crying.  Or he would come home from school, didn't want to do homework, and when I would call to say hi he would not want to get on the phone and would say "I hate mommy!"  Definitely not a job for sissies!  He goes thru these periods once in a while.  In the beginign when he'd say that it would hurt, but after a while I realized, he just doesn't know how to express what he's feeling and you grow a thick skin to get thru the rough spots.  All in all tho he is a loving and and good kid, so I don't try not to let these times stress me out too much. 

On one particular Tuesday, E did this to his room.
Not sure why he was upset because he won't tell me. Sometimes when it's a daddy day he doesn't want to go.  He had a hard time in the beginning, but then got used to it, but now and again he'll act out, and this was one of those days.  I took a different approach this time. Instead of making him clean it up when he got home, I packed up all the toys from the floor (even the chair). When he got home he was shocked to find it all gone. I told him that he was disrespectful to his toys and our house and he will have to earn his things back. After sulking in his bed, he got up and said "I'm sorry mom. I want to earn my things back". Tears of joy, I made a breakthrough!  I learned very quickly not to say something you are not going to follow thru with, so I choose my words carefully :) In the past I’ve told him, if you don’t pick up you toys/books, I’m going to throw them away… luckily he did! But there has been a few times we’ve had to throw away a few toys because that’s what I said we’d do. So now I say I’m going to take them away.

Since then his mood has been up and down, but nothing as bad as the room disaster.  But last week he came home with homework that was new to him; division.  He was having a really hard time understanding and I was having a hard time explaining to him in a way that he could understand.  So I came up with another incentive.  Wii time!  I punched out circles and wrote 10 MIN on each one (I made 6, I knew D would want in too).  I told him that when we were done with the homework, he could get a "token" for Wii time.  And he started to calm down.  Now here comes the other son, who was doing his homework on his own in his room.  I told him he could earn one too when he was done.  And before I knew it, we were all done with homework!  I told them they could earn up to 3 a day, but to be careful because they can also be taken away.  I also told them that if hey got up and got ready for school and cooperated, they would earn another.  This one is really for E, he hates to get up in the morning, but I am letting both boys "earn" them.  It was a miracle!  E got up and got dressed and ready NO PROBLEM, and he got his "token".  And after school they did their homework, earning another... so the each earned 3 and they got to play Wii.  My mom saw the "tokens" and got me some plastic gold coins to use.  I love how these little plastic chips are coming in so handy!  And even on days where there is just not time for Wii, like soccer practice days, they can still earn them and use the for weekend play time.  And it limits the time on the Wii too, so it's a win/win!
It's been almost a week and so far so good.  I'm so glad when I figure out something that works, and in this case for both kids.  Whatever make life easier! :)