Ten Commandments For Interacting With Kids On The Autism Spectrum

Read this this morning on facebook, and had to share it with y'all:

Ten Commandments For Interacting With Kids On The Autism Spectrum, by Stop Romanticizing Autism:

TEN COMMANDMENTS FOR INTERACTING WITH KIDS ON THE AUTISM SPECTRUM

1. Thou shall not yell when speaking to me.
My Autism does not impair my hearing and I am extremely bright. Perhaps even brighter than you are.

2. Thou shall not ignore me, talk negatively about me, speak unnaturally slow, or ask questions to others in the room that pertain to me.
I can comprehend what you are saying just fine.

3. Thou shall believe in me and help me believe in my skills and self worth.
Note the good in me and do not merely point out my negative behaviors. Believe in me and I will believe in myself.

4. Thou shall not perceive me as dumb.
I am extremely intelligent. I do not learn in the same way as you, and maybe not as quickly as you expect me to. Have patience with me. Once I recall information, I never forget.

5. Thou shall not judge my behavior.
I can get overstimulated in certain environments. I may be hypersensitive to sound and loud noises may hurt my ears. Fluorescent lights are distracting for me. They have a humming noise, and can pulsate. All the noises in a room can blur together. Please make accommodations to help me.

6. Thou shall not be so quick to scold me.
Do not tell me that “I know what I did”. I do not. Tell me what my infraction was in a simple, concise manner. I want to please you, but I have difficulties inferring meaning within a vague statement. For instance, do not say please clean up your bedroom. Tell me exactly what you want, such as ‘Please make your bed and pick up your toys”.

7. Thou shall not compare me to others.
Please remind me, and note the talents that I possess. This increases my confidence and positive self worth. Learning disabled or not, we ALL have talents to contribute within society. I need you to help me realize what mine is. Believe in me and I will believe in myself.

8. Thou shall not exclude me from activities.
Please do not mimic me, ignore me, or bully me. Please invite me to play with you. It hurts my feelings when I am excluded. I like to run and jump in the playground, and be invited to birthday parties too. Grown ups can help me make friends by encouraging other children to play with me. I can be a loyal friend if you get to know me.

9. Thou shall give me choices.
I do not like being ordered about any more than the other children. Give me choices so I know you value my capabilities and opinions. Make them simple and concise. Present two options or so. I get confused when too many questions or directions are given at one time due to my processing speed. For instance, ask me if I would like to wear my blue sweater or green one, rather than asking which sweater I would like to wear.

10. Thou shall not judge me by my diagnosis, but by my character.
I am an individual, just like other children.




My question is, reading through this, how often do you as a parent of a child or children with autism catch yourself thinking "oh crap, I do that and that and that..."  I think I will make a more conscious effort in thinking before reacting with the kids.  Maybe I should have this printed in poster form and put it up on a wall to remind myself on a daily basis...


Consider yourselves hugged,

Lou

Do You Still Have Autism: Changes In DSM V For Autism Diagnosis

Scary thought.  The psychiatric community is changing the the criteria in diagnosing mental disorders, including the autism spectrum disorder.  The autism community is freaking out, as the separate diagnoses such as classic autism, asperger's syndrome and PDD-NOS (Dayton's diagnosis) are no longer going to be classified by their "type" of autism, but lumped into one diagnosis:  AUTISM.  Period.

I'm not quite sure how to feel about this myself.  But I know that the diagnosis for PDD-NOS has caused confusion with Dayton's educators.  Now that he's diagnosis will be AUTISM, there should be less confusion.  Unless of course "they've" made it more difficult to diagnose a child with autism...  That's a whole new story.

If you're concerned about you child keeping their diagnosis, make an appointment with your child psychologist and ask him straight out!

Anyways, here's the link for the new DSM V diagnostic manual for the autism spectrum disorder:  http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

This revision was approved last week.  What are your thoughts?  As for us, it seems even though Dayton fits on the higher end of the autism spectrum, he still meets the criteria listed in the new DSM.


Consider yourselves hugged,

Lou

How Autism Changes One's Life

So...  some of you out there have been living with autism for a while, and know exactly how the diagnosis affects your life.  Some of you out there are friends of mine, or friends of friends, or friends of friends of friends...  you know, wanting to be supportive and reading what I post, but sitting there thinking "What the hell is she talking about, I just can't relate..."  God bless you for trying!  You truly are good friends!  Maybe you're new to autism, and wondering what the road ahead looks like.  So, let's go to the very beginning, shall we my dears?

Let me tell you 'bout the birds and the bees and the flowers and the trees...  kidding!

Autism, the definition:  a group of developmental disabilities that can cause significant communication, social and behavioral challenges.  Developmental...  what is that?  Exactly what is sounds like...  the mile stones every child meets are met late...  Their learning is impaired...  Okey dokey...  so ummmmm, what does this look like for those of us involved in the daily care of loved ones with autism?

First, you receive the diagnosis.  Just to make our life even more confusing, we have 5 types of autism spectrum disorders, also known as "Pervasive Developmental Disorders."  They range from a severe form called autistic disorder, also known as classic autism, to a milder form called Asperger Syndrome.  If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS.  This is the form of autism Dayton is diagnosed with).  Other rare, very severe disorders that are included in the autism spectrum disorders are Rett Syndrome and childhood disintegrative disorder.  Now that you've got a diagnosis, you must digest it.  Delays in your child's development can no longer be explained away by your child being a late bloomer.  His or her behavior, actions, delayed speech, quirky behavior and other "delays" are a result of a neurological deficiency... Unless your child has been diagnosed with Asperger Syndrome, your child will be behind academically.  For example, my son is half way through grade one, but sits in a grade three classroom, because failing him is NOT an option...  Grrr...  More of this on the next post, I promise you.  The title to look for is "Choosing The Right School Division For Your Child With Autism."   You will fight for your child's right to a quality education. 

Second, you need to deal with your grief.  Once you understand what I've just told you about the diagnosis and you understand the magnitude of what this means, you will grieve for the child you "planned" to have.  Denial is first.  I remember that one.  "They're wrong, let him grow up a little, jeez!"  Next on the list will be anger "this is so not fair!!!  (and then you throw a huge temper tantrum).  Then we have bargaining.  Oh yes.  "God!  Do you hear me?!  I'll go to church every Sunday and volunteer at the local shelter for the homeless, just take this autism thingy away!!!"  Once you're done bargaining and seeing no results, you get depressed.  The depression stage takes the longest to overcome.  I still struggle with this one (and here you thought I had it all figured out, didn't 'cha?).  Finally, acceptance.  Acceptance is awesome, we can't see the light to acceptance at the beginning as we're in denial or too angry to think we'll ever accept it, but once you do, your child will make a serious connection with you.  Trust me, I've seen it with Dayton.  No one "gets" him better than I do, and he knows it...  Well...  maybe one more person, grandma Karen...

OK, so we've covered the first two things to get through.  These two sound tough, no?  Your life's about to get busy, so hang on to your horses (never, EVER say that to my boy...  He'll look for them for hours!).  Get a calendar, cause your life's about to get busy.  Day off?  Not with autism!  Ready, set go!!!

Now we're gonna dive straight into bureaucracy!  Oh yeah!  You will be connected to family services and they will get you a support coordinator.  Most of these people know nothing about autism, and don't care.  You'd have better luck of winning the lotto or finding the Loch Ness Monster than finding a good support coordinator.  I've found one, but I'm not sharing.  I'll fight you before I let her go!  Then you have to get speech therapy, occupational therapy, physio therapy, all of which you can only get before your child starts school.  If your child doesn't get the diagnosis before age three, you're pretty much SOL or s..t out of luck.  This is the case with my little guy.  I fought for four years to get his diagnosis, and he finally got it, three months before turning eight years old.  Unless of course you have a bottomless pit of cash, well then of course you can have services, any freaking service you want, including a diagnosis!  I don't think there's many of us out there with this kind of money.  As it is, I'm spending just under $500.00 a month for Dayton's medications and social skills group. I'm not going to go into how much I spend for Dayton's supplements, diet and coming up soon, Kumon Learning since the school can't teach him anything.

Once services are in place, your schedule fills up pretty quickly.  I can also tell you that therapy is ON GOING, even after the therapist has left.  It is up to the parents to follow through with the therapy, not the therapists.  It is especially important to follow through when in public.  This is where your child will learn to generalize what was learned in therapy and apply it to real life situations.  During my medical leave, I can honestly tell you I've been so much busier staying at home than I have been going to work!  By the time 7pm rolls around, I'm ready for sleep.

Schedule, schedule and schedule your child's day!  These kids thrive on schedules for two reasons:  once, it shows them what to expect during their day.  Two, it also shows them that some of their favorite things are included during the day.  I know for Dayton video games are super important, and I need to have a picture of a gaming remote in his picture schedule if I want him to comply to any change in his daily routine. 

We're not done yet, we still have all the follow up appointments at the doctor's office and by the support coordinator and CFS if you have them involved to advocate on behalf of your child in the school system.  Yes, managing the care of a child with autism is a FULL TIME job.  Only thing is, this full time job lives with you.  There is no break, and God help you if you get sick, because there's no one for you to call to "cover your shift."

We love our children, they are the air we breathe, with or without a diagnosis.  With a diagnosis of autism, we still give our children everything that goes into raising a child, the affection and love any child gets from their parents is the same for us.  The difference is during our play time...  During play time, every move I make stems from something I've learned from a therapist.

So, if you yourself don't have a child with an autism diagnosis, but have friends that do, cut them some slack when you ask them out and they say they're tired and would rather you come over to their house instead.  Their child is surrounded by their toys and the parent's saving grace - their bed when bed time comes.  Maybe offer to babysit so the parent can take a nap.  I'd kill for a nap right about now.  Offer them an ear to vent.  I've been fortunate to have a good grandma for Dayton, grandma Karen who is always listening to me rant and rave without complaining.  She's been a rock of support to me and an amazing grandma to Dayton.  She actually "gets" Dayton and he knows it.  He loves her for it.

If you've received a diagnosis in your life just recently, don't look at this post and start crying, please!!!  While yes, you will be working with your child much more than a parent of a typical child needs to, believe me when I tell you, it's all worth it.  I wouldn't change my son for the world!  But I wish I could change this world for Dayton.   Remember, everyday God takes you by the hand and says, "No matter how difficult the path you tread...  I will never leave your side."


Consider yourselves hugged!

Lou

~No label~

Again I thank my dear friend for letting my guest on here. Although it has been a daily thing this week, It will start to become more casual or when something really bugs me. Again I'm not here to upset people but just get people talking. There is a lot of people that are too shy/scared etc to say what's on their minds, or ask the questions that I am bringing up.

As my previous blog I stated, I would return to the topic of labels. Up until Nik’s “label” I couldn’t say I knew anyone with Autism, let alone that I knew someone with PDD-NOS. And like many others when I heard the word Autism, I thought Extreme Makeover. I laughed when the doctor said it. I asked him if we were talking about the same child. My son doesn’t rock, doesn’t flap his hands. Hell if you look at him, the only thing you could say is “WHOA, he’s a big boy”. Then I started reading. Man oh man have I read. It’s almost become a bad habit. A night, with nothing interesting on TV, I head over to old Bertha and start reading. Everything and anything really. Then I started reading that my son is Autistic.

I guess I should give a bit of a back story. Nikolas was the perfect baby. Other than the late delivery, perfect pregnancy, no midnight feedings, never cried. Such a happy, healthy baby. Then he turned 1. It started with a couple allergies, asthma, and severe skin problems. Then came age 2. More allergies, worse asthma and a “speech delay”? WTH are you talking about? He’s two, how many words does a 2 year old need to know? Well, apparently more than 5. Then age 3 came. Our first appt with CDC  (a place I had never even heard of). “Well miss Thede, he has a severe speech delay, and global developmental delays. We also aren’t able to rule out a form of autism at this point, so come back in 6 months and start therapy ASAP”. Umm I’m sorry, what just happened?  We went to the doctor with concerns that he couldn’t feel pain and now he has all these “LABELS”?  So I left. Angry, scared, confused and just plain lost. 6 months went by, and we returned. All the labels stuck and now they wanted more people involved. Not to mention at this time his asthma had gone insane and my newborn baby was fighting a blood infection in the hospital. What a life at the ripe age of 22.

At age 4, therapy wasn’t helping, everyone was hitting their heads lost at what to do. One person said, well if only he had a diagnoses, everything would change. Huhh? I thought we already had that? Now you want more labels?  So back for yet another assessment. This one took over a year, and landed us at MATC. Within the first 20 minutes of being terrified, the AMAZING doctor looked at me and said, "Yup he’s autistic."  Huhh? Are you crazy? Again, this is the time I honestly started laughing. What was he talking about. He has all these other labels and now a new one. So we present the new information to the workers, and they all agree. This was something we were all expecting, “this is good news, we now have a clear diagnosis and things will start rolling now”. Summer came, we moved, took the summer off to soak it in. School started. With all his medical diagnoses and all the labels, I have my head held high and so happy cause “we’re labelled, we’re gonna finally get help”. Nope. Now we’re not labelled right. Apparently although he is autistic, according to a school worker “ he’s just not autistic enough” Come again? Years of assessments and waiting, and all these LABELS added and now he’s not autistic enough? This has been the story since September 2010.

Now depending which family member of mine you talk to, some say more kids are effected now than before. Other’s say there’s too many labels. Maybe they're both right? Are more kids being effected? What has changed to make our kids a lot sicker now? Are they sick? Is the bar just set to high? I don’t know these answers. What I do know is that it shouldn’t matter. If a person loses both their legs, you sympathize. But if they only lose one, do we tell them, “sorry you still have a good one, start hopping?” No. Why does it matter what degree of disability a child has? I have always thought, if a person/child/dog/ cat whatever needs help, you help them. No questions asked. Today that is not the case. Those that need help, aren’t getting it, and the ones that don’t need help are clueless to the situation.

I admit I haven’t been the perfect person. I caused my shit, and trust me I’m laying in it. My child didn’t ask to be different. I think it’s time we get back to basics and stop caring about the stuff that doesn’t matter and start focusing on the important stuff. Our children DO matter. They are our future. Just because society looks at labels and difference we don’t have to. My son doesn’t see the difference between him and another kid. He doesn’t see the difference between an adult and a child. To him we are all equal. Why is that an almost 6 year old “labelled” child can see this, but well educated, over paid adults cannot? I have to admit I’m guilty of wishing I didn’t have to list all his “labels”. With him getting ready for a new school, part of me doesn’t want to tell them all his labels, weaknesses. I want to go into a meeting and just smile for all his strengths. Luckily my child wants to learn. He has dreams and goals. I know “normal” children that don’t even have that. My son is nice to people because he wants to be, and he knows it’s not nice to be mean just because someone is different. He’s passionate about music and numbers, and trying new adventures. Why have meetings about everything he can’t do, and all the “bad/wrong” things about him. Why not change some of the labels? Instead of saying, Nikolas is autistic, delayed, large, allergic switch it up to caring, loving, funny, brave, accepting? At the end of the day we all have labels. We all use labels. She’s “fat”, he’s “skinny”. You're “ugly”, they’re “perfect”.

So this is my take on labels, I’m also signing off with my own label,

Wendy-passionate, mother, daughter, sister, friend, mommy tummy:D

Outcast Parent

I remember a time when I was just a mom without any worries about autism. That time was before Dayton was diagnosed, when life felt normal, like everyone else's life. I figured Dayton would make friends, be a typical  teenager, go to college or university, get a job, get married, have kids of his own (I wanted 5 grand babies) and live life to the fullest, be a contributing member of society, and most importantly, be happy and successful.

I remember what my life felt like before the diagnosis.  Why didn't I appreciate it more? Instead I worried about stupid things like finding the the best quality baby food, debating whether I should just make my own.  My worries are so much greater now. Will Dayton make genuine friends, friends that care about him?  Will he get married? Will he be able to hold down a job? Will he have the five grand babies I've dreamed about?  Will he be independent? Will he have the means to take care of his family?  Will he be able to function without my support?  On "bad days," there seems to be one thought running through my head...  I know what needs to happen.  I just can't die.  It's just not an option. Who else would take care of my babe?

I want that carefree feeling I had before the diagnosis. I'm thinking we both do, so I take my babe to the park!!!  The park is literally in my back yard.  I make a deal with myself that I will bring my camping chair and a book that has nothing to do with autism and read while he plays, you know, like the rest of them parent folk do.  I will not sit there and assess Dayton's behavior and wonder how and when to "jump in" and intervene. I will foster his independence by trusting he will take care and remember the rules.  I will talk with the other moms and join in their conversations. I will not let autism dominate my thoughts and I will relax and enjoy the company of moms my own age.  "Hoooooo Raaaa!!!"

Before we head out the door, we must go over the rules:

“No touching anyone, keep your hands to yourself”
“No screaming”
“Find mom if you need help” etc.
I ask Dayton to repeat the rules back to me and check for understanding.

I grab my Kindle and chair and Dayton races ahead of me to the play structure. I take a big breath and think of how relaxing this outing will be. As I approach the play structure, a friendly woman says "hello."
“Hi” I introduce myself and point to Dayton "that one over there is Dayton."
“Dayton, yes of course. It’s nice to meet you.”
Dayton, yes of course... What does she mean by that? Does she know him? Does she know about his diagnosis?
“Stop it!” I tell myself as I unfold my chair. “Stop it right now!”
Two other women are seated on the super uncomfortable bench.  They both turn and smile at me.
“We were just talking about St. Malo” a mom tells me. “Have you been there?”
“Oh yes, I love camping there, so much fun for the kids."
“That's right” she beams. “The kids go off on their own for hours while the adults hang out at the camp site. It's such a relaxing day."  I'm thinking wow!  Their kids might go off for hours and come back, but I'd probably never see mine again. I stamp the thought out of my mind and turn back to the conversation.

“And if you add a little more seasoning and put it back in the oven for another 30 minutes, it will be the best pot roast you've ever tasted” one of the women says.
Pot roast! They have time to make pot roast on a week day?  Am I the worst mother ever?
I listen in amazement as the women around the table share their recipe secrets. By the time I've finished prodding my son to do simple tasks all day long, I can barely remember my name I'm so tired. Cooking a pot roast would not be on my list of things to do.

With nothing to add about pot roasts, I turn towards the play structure to see how my babe is making out. Sitting at the end of the slide happily arranging his pokemon cards, he appears completely oblivious that every other child is playing tag. I resist the urge to go over and prompt him to participate.
“Focus” I tell myself. “It's time to relax.”

The conversation has turned to homework. Now here's something I can talk about! “Can you believe how much homework they get?” one of the mothers says.
“I know!” I chime in.
“I'm thrilled about it” says the short one. “It keeps him off his video games and gives me time to make dinner.”
“That's true” adds the third one. “I use the time to do laundry. Every now and then Stuart has a question but for the most part, he does his work on his own.”

I'm frozen in shock! What? Did they just say they use this time for themselves? Did I hear that correctly? My mind drifts to our homework sessions. Armed with motivators and lots of patience, I coerce my babe to complete his homework every day. After an hour of prompting, presenting questions in different ways, silly diagrams and theatrics to keep Dayton interested, homework is finally done. He races off to his video games while I stare vacantly into space, too exhausted and emotionally drained to move for the next five minutes.
I snap out of my trance and smile. The women are chattering about their children asking for cell phones and wanting Facebook accounts. But I can't relate to any of it and I'm bored. It's as if I’ve been dropped here from a distant land, with a culture so foreign that we might as well be speaking a different language.  Think it's time to go.  I announce to Dayton he has 10 minutes left to play.  Then 8, then 5, then 3, then 1 minute left.  I'm sure the women behind me think I'm nuts.

While I'm saying my goodbyes, Dayton begins to stim and flaps his hands while doing a little jig. I think it was the first mom that spoke to me that stared at Dayton incredulously, and not being able to resist, she glances at one of her friends as in “Are you seeing this weird behavior?” Part of me tries not to think of their conversation when I leave and the other part of me doesn't care.

Walking home, I ask my babe if he had a good time.
“Great” he says. Looking at his delighted face my heart feels like it might just burst. In his pure innocence and naivete, it never occurs to him that people might judge or gossip about him. Why would it? He accepts and commends others just as they are. The world might think he should change his ways but my son doesn't care. He's not out to impress. People spend a lot of money on workshops trying to develop that kind of self confidence.

With a smile on my face I hold his hand. It's true, sometimes I long for my fantasy world where I have time to cook pot roasts and relax in a park while my son plays with his peers. I don't have that luxury but my son has enriched my life in so many ways. With a new perspective I have developed a compassion and respect for people with differences that wasn't present before. There was a time when I looked upon people with challenges in pity. Now I desire to know them and discover their depth within. Now I strive to make a positive difference in other people's lives. My son has made me a better person. It has come with a price and plenty rewards but I am grateful because I wouldn't want it any other way.

As my dad always says, consider yourselves hugged,

Lou