Autism Island to “I wish I didn’t have autism” & “I Wish I Didn’t Have Aspergers” - #AutismPositivity2012

This post was written to someone who might think "I wish I didn't have autism" or "I wish I didn't have  Aspergers " as part Autism Positivity Day Flash Blog.  Join the movement!

Let me start by saying feelings are never wrong.  To feel upset, sad, alone, and whatever other feelings that lead you to typing, saying, or thinking, the words “I wish I didn’t have autism” or “I wish I didn’t have Aspergers” aren’t wrong.  They are there and they are real.  Although I do not have autism or Aspergers, I am the parent of a beautiful little girl who does have autism.  Although she is only 4 and not yet very verbal I think there are days that she might think “I wish I didn’t have autism.”  I think a few of the reasons she might think this are because she feels different, she feels alone, and having autism is hard.

Medication - In the end what is best for our children wins.

If the thought of medicating your child has ever crossed your mind than you know the turmoil we just went through, again.

Lexi is only 4 years old.  She is young and sweet and silly.  However, Lexi has serious sleep troubles.  The first time we had to medicate her was to deal with insomnia.  It took us 2 years of terrible nights and awful days to finally decide to take that step.  In the end we felt we didn’t have a choice.  Lexi was so grumpy she couldn’t function on days she was up all night, which were 3 to 4 times a week.  So after trying a million different things including melatonin, Benadryl, and Klonopin we finally found that Trazadon helps Lexi sleep at night.  The difference it made in her daily life was immediate and impressive.  The difference it made in my nights and days was also immediate and impressive.  Sleep is good!

Guest Post - All Those Who Suffer in Body, Mind, or Spirit

If you know me you know I am not religious.  But I respect those who are religious and I appreciate spirituality and the joy and peace that comes with it.  So, with that said, I am happy to share this great guest post. - Christine

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Dan Kirk, aka Papa Bear, is a Stay-at-home dad of one son who has autism, and another who's just as ornery as his dad. He used to homeschool them both, but now he just homeschool the ornery one. He blogs about his quirky life at Goldilocks and the Three Bears.

GL is in the middle.

It's hard to find a church when you have a child with autism. Many of the symptoms are behaviors that look like those of an unruly kid with clueless or uncaring parents. Some people try to straighten him up beyond his ability. Others try to straighten us up. One church told us that we were welcome, but if he couldn't act like the other Sunday School kids, he shouldn't come.

The effects of autism awareness

Have you ever wondered what the tangible effects are when you raise autism awareness?  So have I.  Well, let me tell you about yesterday.

Yesterday Lexi and I went to one of my best friends, Anne’s, house warming party (this is a picture of her front room, so cute!).  As any parent of a child with autism knows gatherings at other people’s houses are like mine fields.  There are so many triggers everywhere that there is bound to be some kind of meltdown at some point.  Especially a party with LOTS of people, and Anne is one of those people who have a big family and everyone shows up to events.  So with the knowledge that something was going to go “wrong” I rang the doorbell.

Sometimes I could use a bit more happiness...

If you crawled into my head most days you would hear something like this: 

Oh my word I have so much to do today - Why is Lexi melting down already? – Crap they’ve got to leave to get to the bus – Ok, now I have to post on my blog – Babies hungry – Crap forgot breakfast… again – Alright time to make flyers for that convention this week – Really baby your tired already – Man I need a shower –Dang it I need to do laundry, and dishes, and clean the house – Seriously baby you are already awake? – How is my to-do list growing? – Baby just be happy, I’m busy – Dang it Lexi needs insurance – I need to call my legislator again – I need to make 10 phone calls to get more people involved – I really don’t want to cook dinner – I’m going to be late to Lexi’s bus stop – Lexi be happy and watch TV – Baby just be happy for a minute – I have like 40 more things to do today – How is the house so messy? – Well, Nate is going to have to make dinner – Kids, husband, I’m busy right now – How is it already night time? – Dang it! I didn’t get half of the things done I needed to!

Guest Post - Should - Sweeter than Cookies

Angie Nadauld is the mother of three beautiful children. Her oldest son, Jake is 8, her second son, Joey is 5, and her daughter, Courtney is 2 years old. She loves being a mother. Her hobbies include sewing, running, reading, running some more, volunteering, and yep, you guessed it running!

My oldest son has an ASD, PDD-NOS. It is very mild compared to other cases, but there are situations that he struggles with. Last September my friend and I met up with our children at the Daybreak. After a little shopping and playing in the park, we decided to go to a little pastry shop called, "Swirly Girls Gourmet Bakery." 

While we were there enjoying our treats, the wind started to pick up, and the clouds became very dark. Jake started to get very anxious. He was insisting that it was time to go. Afterall, the wind could blow the car away. When that concern wasn't enough, he began stressing that Daddy needed our help. I continued to assure him that all was well, and that we would leave in a short while. 

My Autism My Voice - a MUST read!

Today I want to highlight one of my favorite blogs and an amazing advocate for the autism community.  If you have not heard of Kerry Magro at My Autism My Voice yet... you will.  He is an adult with autism who is constantly advocating and spreading awareness and acceptance for our community.

Really My Autism My Voice is a must read for everyone in our community.  I love the way he is proud of who is he and how he promotes awareness and acceptance of autism.  I read his blog, look at what he is doing with his life, and especially understand the way he views his autism, and I think - this is what I want for Lexi.  I think he serves as the perfect role model for those growing up with autism, and the perfect educator for those of us who have children with autism.

The cost of a meltdown

Fridays are hard for us.  It’s the one day of the week that Lexi doesn’t have school and its not yet the weekend so daddy isn’t here to help and have fun with.  So when it comes to about lunch time both my girls and I are going crazy.  This was the way it was last Friday.  So we decided to take a trip over to the Sonic Drive Thru and get some yummy, greasy, not good for us, food.

Unfortunately this outing did not help the near meltdown state both of my kids were in and upon arriving home they both lost it as I was trying to get them out of the car.  Lexi needed to hold 5 things at once or else the world wasn’t in order, and inevitably something kept falling out of her hands.  Zoe was just so tired she couldn’t see straight.  So between carrying Zoe as she tiredly cried, and trying to assist Lexi in carrying all the many items that were required on this journey, I forgot to grab my purse and lock my car.

Guest Post - Comparisons Not Welcome

While having two kids on the autism spectrum, a husband with ADD, and her own struggles with Fibromyalgia, Margie Walker works every day to educate the public about autism via her blog Speaking On The Spectrum. She works with the Utah Autism Coalition as their Social Media Chair, and she also maintains a personal blog writing about her every day life over at Tired Mom.

As the mother of two children with autism, I've received lots of advice and comments from various family, friends and other well-meaning people. Most of the time I listen to what they have to say, then (as politely as possible) I try explaining that "it's not that easy" or "I've already looked into that." There's one type of advice, however, that whenever I hear it I just can't help but grit my teeth. I try to keep my thoughts to myself because if I don't, I'll end up on my soapbox.

20 things you should not say during a code brown.

Poor Homestyle Mama (with a side of Autism) posted this on her Facebook page yesterday:

Dear Autism Island,

I'm pretty sure you are the one who wrote 50 things you should not say to an autism parent followed by 50 things you should say. I think a good sequel to that would be 50 things you should not say while Mom is cleaning up poop with "you need to teach him to keep his diaper on." topping the list and 50 things Mom should not have to say while she's cleaning up poop with "DON'T EAT THE POOP! Good Lord, somebody please help me!" taking the lead on that one. and the Autism experts' telling you to make him clean it up and he'll learn not to do it- not such good advice.

Much appreciated,

Mac.

So I honestly couldn’t resist the challenge.  I have to say I’m really glad we don’t have many code browns anymore.  I remember our worst one; we spent hours and hours cleaning it up, had to use a shop vacuum, and couldn’t get the smell out for days.  Oh the joys.

Get tissue!!! - Autistic Child Defended in Café

Ok I am crying my eyes out right now!  How many of us have been in this exact situation?  This is an amazing example of what you should, and should not do.  If you don't have a child with autism you need toknow this situation is REAL.  It REALLY happens to us... all the time!  To see amazing people step up for families like mine... well I can't stop crying.  Thank you to everyone who is there for our families!  We NEED your support!

Guest Post - The Weirder the Better

Michelle is mother to 5 awesome kids aged from 16 down to 4 years old. One of her children is diagnosed with Aspergers Syndrome, and one is diagnosed with Autistic Disorder. Michelle began blogging at This is Not What I Signed Up For, and her Facebook Page, as a way of recording her thoughts and feelings about her journey parenting Autistic children.  Michelle lives in Katoomba, 2 hours west of Sydney, Australia, with her Wonderful Husband, their kids, 2 dogs and 2 cats.  

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This morning I was on my Facebook page and I saw something unusual. I noticed a couple of pages talking about being weird as though it was a good thing. I clicked over to their blogs, and found this post titled Weird is the New Normal and this post called Weird Apple. There are other blogs out there posting similar things, and it is all part of a community supporting each other that started when one mum asked for help encouraging her ASD son who was worried about being teased for being weird at his new school. I read a few of these posts, and realized something.

I am weird too.

Guest Post - Can I help?

Andrea Griggs is a wife and mother of 4 children including 2 with autism.  She is the Director of Grassroots with the Utah Autism Coalition and is a great advocate for individuals and families with autism.  Andrea’s hobbies include scrapbooking, blogging, reading, and singing in the car.  You can read more from Andrea at her blog Picking Up The Puzzle Peaces.

I was at Wal-Mart with my 2 younger sons-Wal-Mart is probably my least favorite place to take my kids.  It’s too crowded and loud, the lights are too bright, and there are far too many distractions.  It’s complete sensory overload for my kids.  It was a long shopping trip-by the time we got to the checkout, I was exhausted and my sons were done!

My 5 year old was completely overwhelmed and was having a complete meltdown.  My 3 year old was grabbing candy bars as I was trying to calm my older son.  I turned to the woman behind me to apologize for slowing down the line and my children’s behavior.  I expected her to roll her eyes or make some remark about disciplining children better . . . but she surprised me by simply saying “Can I help you?” 

Autism Semantics

I don’t think you can be involved in the autism community long without dealing with the idiosyncrasies of autism semantics and “people first language.”  In my writing I have defaulted to using people first language but on occasion have decided not to.  I wrote a bit about this in my post Autism parent vs. parent of a child with autism.

I find the people first language debate very interesting.

50 things you SHOULD say to autism parents.

Wow!  50 things you should not say to autism parents went viral this week getting over 10,000 views in 48 hours.  Thank you to everyone who read it and shared it! 

I received many comments wondering when I was going to post 50 things you should say to autism parents like I promised.  Here is one comment that I think sums up how many people feel “I do not have autistic children. Most of the things on this list sound horrible. Some of the things I think are people trying to make conversation and simply understand your world better. How about creating another list of things you'd prefer to hear people say? Some people such as myself are often afraid to say anything at all about kids who they know have autism for fear of saying something that might be taken the wrong way. Thank you.” – Anonymous

Thank you for asking.  The fact that you ask shows you are heads and tails above many of the people we talk to about autism on a day to day basis.  Autism parents really do want to talk about our children and about autism, most of us live to be on our autism soap box and raise awareness.  But it can be a touchy subject for us too.  So before I go into the list let me give you four basic rules of thumb to remember when talking to autism parents:

There is no order around babies.

Lexi with her lined up puzzle pieces and puzzles.

Oh thank heavens Spring Break is over!  It’s Saturday night and I feel like I’ve been hit by a train – or maybe just a large SUV.  This was my first Spring Break, and somehow it was worse than Christmas Break.  I’m really not sure how that happened.  Maybe it was because Christmas break was full of events and the anticipation of Christmas coming up.  Maybe it was because Zoe (the baby) wasn’t crawling and I wasn’t playing constant referee trying to stop war between two little girls determined to have things their way.  I’m pretty sure it was the later of the two.

Autism Insurance - Salt Lake Tribune - Check it out!

I'm excited to announced that today I was published in a newspaper for the first time.  It probably isn't really that big of a deal... but I am excited about it!

Here is an excerpt: "I felt defeated. My daughter was lost. My insurance company, that I had naively trusted to care about my family’s well-being, told me there was no hope for my child. It’s the modern-day equivalent of "You might as well put your child in a mental hospital; there is nothing you can do."

So go check it out and leave some love (comments).

Insurance for autism - Salt Lake Tribune

If you have questions about autism insurance click here.

New autism rates. What are people so afraid of?

I have been astonished at all of the crazy comments I’ve read on articles discussing the recent report from the CDC on the rise in autism rates to 1 in 88 nationally and 1 in 47 in Utah.  One reaction I saw over and over was something along the lines of “this research is bogus so no one should pay any attention to it.”  This is a ridiculous claim.  Judy Zimmerman and her team of trusted researchers at the University of Utah spent countless hours combing through and analyzing the data.  They had “no less than 7 autism experts” verify their data and findings.  You can’t even consider the highest rate, Utah’s 1 in 47, a crazy outlier.  New Jersey is just behind us with 1 in 49.  These rates aren’t even the highest rates found by researchers.  An intense research study in South Korea found autism rates of 1 in 38 children.  The research presented last week is sound.

Guest Post - Why this nuerotypical family "Lights Up Blue"

Guest post by Anne Nichols.  She is the wonderful mom to two great boys and one of my best friends.  She has been an amazing support to me sine day one. You would never know she isn't an autism mom because of how well she "gets it", how personally she takes autism, and dedicated she is to spreading awareness.  I don't know what I would do without her!

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"What's wrong with her?" My brother mumbled it under his breath so Christine couldn't hear it from the bathroom adjacent to my living room. He was staring at a little girl, sitting against the wall with her hands over her ears, rocking back and forth and humming to herself. 

I flew into a rage, fueled by my desire to educate people who are so incredibly ignorant of what autism is and is not. 

The beauty of balloons - Light It Up Blue balloon launch

Photo by Angela Sandberg

Saturday Lexi and I went to the Light It Up Blue balloon launch in West Jordan, UT.  The minute I arrived I knew I was going to enjoy myself.  I’m pretty sure if you watched me run after Lexi into the crowd of autism families you would have seen me take a visual sign of relief.  It’s amazing to know that Lexi can completely be herself, no questions asked, and everyone thinks she is wonderful and unique – not a child with a discipline problem.