Blue, April, Awareness, Acceptance etc....

Most people where I live, if they know our name, (which they probably do because of our business in town) know which house is ours. If/when starting April 1st they see our house “lit up” blue and curiosity beckons them in the direction of google, they will see that it is for autism awareness. They may learn something about autism while they are on the internet and if in the future they come across my kids in our town which is a whole whopping 1 square mile (chances are it will probably happen at some point) maybe they will know a little more about them.

I know a lot of people have an issue with the color of autism awareness being blue. I know it is blue because when autism was first becoming well known there were far more males being diagnosed than females so….blue….it made sense at the time. I’m sure the intent was not to exclude girls from awareness.

It’s true there are a lot more females being diagnosed now. My daughter is one of them. I have one of each! To partially quote Jim Carrey from “Liar Liar”, “The goddamn [color] is blue!” and that is what people associate with autism awareness, so that is the color I’m putting on my house. If I’m going to light the outside of my house a different color for an entire month, I’d like it to be pretty obvious why.

Aaron and Rachel are collectively one of a kind where I live. They are non-verbal siblings. If there are any others like them here I have not been made aware.

I could spend my time trying to explain a multi-colored light (which yes, would also make sense but I would still have to explain) or advocate for another color, but I would rather spend the time spreading autism awareness to my teeny tiny town about my 2 non-verbal autistic children. That way should God forbid one of them ever need help, maybe there will be a greater chance of them getting help because everyone knows who they are and that they have autism and can’t verbalize their needs. Our town is bordered on 2 sides by a large, fast flowing river. Our house sits on said river. We have measures in place at home to prevent this from happening, but should one of them ever wander off I want to know that the community at large will help us out and know what an extreme emergency it will be.

I could also spend time shouting acceptance vs. awareness from the rooftops. In my experience, in order to accept something, one usually wants to have a good understanding or awareness of what they are accepting. I'm not saying that's the way I am personally, but that’s just the way most human beings are unfortunately. At this point I want to spread awareness. The people here in my town who know them already accept my children for who they are. I want people to understand them better. Most people’s understanding of autism is very skewed. “Oh your kids have autism? What are their special gifts?”

You know, Aaron and Rachel probably have special gifts. Who knows? They're both very smart. Since neither of them can speak functional English though, and Aaron has such severe sensory issues he’ll kick your ass if you get anywhere near his ears like Warren from “There’s Something About Mary” I want people to be aware of those parts of autism for the sake of my kids. Not to say that my kids don’t potentially have high I.Q.’s or some special talent that we have yet to discover. They probably do and those things are great. My I.Q. is 135 which affords me the intelligence to know that the people around my children need to know all sides of autism because we live in such a small community. I guess I’m just selfish like that.

So, if anyone in the autism community takes issue with my house being “lit up” blue (nothing to do with A.S. although I am neutral on that subject) I’m sorry you are offended or don’t like blue or whatever but as the old saying goes, “If you don’t have anything nice to say……”

I am a defensive person and I’m also Italian. It is in my DNA to argue and fight about stuff although I usually reserve it for defending my family or myself. Especially when my intent is to protect and educate others about my family and that is what I am attempting to do here.

As you can see I am getting defensive and nothing has even happened! There is a lot of infighting in the autism community and I think it is tragic. We could be spending our energy on so much more to help children and adults on the spectrum but some people just want to argue. Not everyone, but some. The ones that argue the most seem to have the loudest voices sometimes and I take great issue with that. They will come in and hijack any productive discussion and it always leads to nowhere.

Yes, even with the last paragraph I will get defensive and I think about all possible comebacks. “If you have a complaint you have to be prepared to have a solution or you can’t complain.” I am currently corresponding back and forth (with him directly) with Senator Barrasso from my state of Wyoming to try to have some autism coverage written in to any changes made to the health care law should Congress be able to get anything passed….ever. I have even asked to go speak before Congress. We shall see. I know I’m not bitching about insurance right now but I’m being proactive about something that plagues almost all of us in the autism community.

Thanks to everyone who reads my blog, loves my precious kids and puts up with my eccentricities. 

For anyone who has ever wanted to do a written journal but doesn't have time...

I've tried over the years to start hand written journals many times and other than when I was a weepy junior high and high school girl I was wildly unsuccessful. I even started journals for Aaron and Rachel at one point for them to read later when they are adults or when I am worm food so they would know some of their milestones and how amazing and brave I think they are…also unsuccessful. For some reason I seem to look at it like exercise, it's intimidating to me in a time sense in that I feel that I have to do all or nothing. I feel like if I go in there and write 3 or 4 sentences every day it would be like I don’t care enough to write more, but I simply don't have the time or energy to write more even though writing is in my DNA. That's one of the main reasons I do this blog. My grandfather was one of JFK's speechwriters and almost every member of my family ended up being gifted writers. I am a writer and I have to do it, but on my timetable.

At the end of every day though, I just want to fall down and relax, recover and read or watch TV, not recap or rehash events or emotions that are sometimes overwhelming and exhausting. The end of the day when the kids are asleep is my time to recharge. With journaling I always felt like I had to get in to my head too much and if I wait too long to write in it I get so back logged that it is then a monumental task that I am unwilling to do and I forget 90% of the days that I meant to journal.

I have also been having trouble keeping track of Aaron and Rachel’s milestones which is heartbreaking for me because to be honest they are quite few and far between sometimes. To lose track of things I hold so dear when the answer is so simple makes me angry at myself. Plus, doctors ask me some of these things and my memory sucks!

It seems though that I have found the answer to my woes. It’s these little ‘One Line A Day’ journals. I'm a grammar nazi and the "A" instead of "Per" part kills me but whatever. They last 5 years! You have a very limited amount of space to write, enough for about 4-5 sentences if you write small. Each page is its own date so you can look back on that specific date each year and compare the days without having to flip back and forth.

Best of all it’s really easy to do every day. I got one for my personal experiences which of course includes my kids so sometimes I’m being redundant but I don't care, and I got one each for Aaron and Rachel so I can give them the journals later. I can get all 3 done for the day in one commercial break from a TV show I am watching! (If I don't fast forward)

If nothing of note went on that day for the kids I just write a big “I love you” or some other sentiment unique to us so there is always something in the space.

There hasn't been one time yet where I have been unwilling or too tired to write in them and I am writing in 3. It’s that easy. I sound like a salesperson.

I know how busy life can be, how quick it goes by and how easy it is to lose track of things. If you ever wanted to journal so you can look back later, but are busy like me and are a mom or dad or just a busy human being you should check these out!

Some people in their reviews on Amazon got all huffy because they said they expected them to be the size of a regular journal (the size of a hard back book basically) and these are "too small.” Well geniuses, that is the point. It's called "One Line A Day" how big do you write? The book is 4”x 6” but I can get in a basic summary of the happenings of each day without a problem, and if for some reason I can’t, it’s my damn journal and I can let it spill over in to the next year’s same day and just figure it out a year later or the next or the next. BFD.

If you need more room buy a bigger journal.

I got mine at Barnes and Noble but I found out later they sell them at Walmart, Amazon and a couple other places for a couple dollars less than what I paid.  Especially at Amazon. The ones that I have are the ones specifically called "One Line A Day." The daily journal is blue, the mom journal is pink and they have a wellness journal that is yellow. I like them because the other brands seem to have less space to write and with the space already so limited I don't want to give up more because the journal maker wanted to put doodles or something cute on the pages. If I want something cute there I'll buy some stickers. That's just me though. As far as I can tell the insides of the mom and daily journals are the same just the covers are different, (they are decent hardback covers) but I still like having the different ones. It's a mom thing I guess. I haven't seen the inside of the wellness one. I looked in a bunch of different ones while I was at B&N and these were just the best ones to me but there are a lot of them.

I think these would be really cute gifts too. Especially for a new mom.

If anyone wants to check them out or buy one, here's a link to Amazon through Autism Daddy. 

Once you're there search "One Line A Day Journal."

And now I have to go clean bananas off the carpet. Maybe I'll write that in my journal later.

A Shout Out to My Husband Pre-Valentine's Day

My husband and I don’t generally celebrate Valentine’s Day other than the occasional card exchange but here’s something nice for him pre-Valentine’s Day just because he’s a good guy.

Aaron and Rachel have been sick for the past 5 days or so. Since they are non-verbal and have poor communication skills in this and every other communications arena (partly because of age but mostly because of autism) they have been unable to express when they are hot, when they are cold, when they are uncomfortable, when they are in pain, where they are in pain, if their nose is stuffy, if their chest burns when they are coughing up a lung, if they are nauseous…etc.

You name it – if it is a part of being a disgusting snot factory, congested, coughing sick kid, they are unable to express any part of it other than a whine and it’s hard to get a hold of it before it gets out of control. Aaron whines literally like a new puppy which will eventually lead to a full blown meltdown if we don’t figure out the cause of the upset quickly, especially at night. Rachel just whines with a look on her face like she smells something bad and that will lead to uncontrollable and inconsolable crying for hours which may or may not be a meltdown – I don’t think we've been able to figure that one out with her yet.

When we hear Aaron whine at night (which he normally doesn't do) it is literally a race against time to get to him because if we don’t get there fast enough he might melt down. Most of the time he’s having what looks like a partial meltdown from some type of sickness discomfort and he’s still asleep. If he wakes up during it, it will turn in to a meltdown so I just have to stand there and watch it and rub his cheeks and forehead and whisper that I’m there until he calms down. He likes that fortunately, at least while he’s sleeping and it usually works….until 15-30 minutes later and then we repeat the process.

The other night during some middle of the night meltdown, snot filled, crying extravaganza with both kids back to back, my husband said something to the effect of, “It sure is fun having two sick kids with autism on top of it.”

No shit.

And then I thought to myself…

As much as I want to smack him sometimes, I’m very lucky to have him. Not everyone is as lucky and I can’t even imagine if I had to do this alone. Especially with two.

I am a complete control freak, I am OCD to a degree that makes people want to smack me, I could go on and on….but I do appreciate and need the help that I get, especially from my husband. He is a wonderful man and a wonderful father. The proof is right there in my two older daughters, they are beautiful, amazing, incredible women. He was a single father with two young teenage girls when we started dating. He should get a medal for that. I was a teenage girl once. I know how we are.

Anyway…I thought it was kind of funny that I had this thought about my husband the other day, (and then the next day I made him chocolate chip cookies…just sayin.) then Autism Daddy re-posted this post he wrote about dads who leave because of autism, then Kreed's World also shared it. I thought I should share it too. I know I got about 80% of my blog followers from Kreed's World and Autism Daddy so you all have probably already read it but…I wanted to give a little pre-Valentine’s Day shout out to my husband because he isn't one of these jerkoffs who left and more men and fathers should take example from him.

http://autism-daddy.blogspot.com/2012/01/a-letter-to-dads-that-left-because-of.html

I also want to say that it's not just for help with my kids that I am lucky. My marriage is by no means perfect. No marriage is, but we have been married almost 10 years, he is my best friend, I think we are happy together, I know I am happily married, (um…honey, I guess I'll leave the other end of that one up to you…heh) and even though in about 10 days we will go on the first date we have gone on in about 5 years because that is how often we get out together without kids, what we have seems to work for us as far as not ripping each other's throats out. We laugh, we joke (some of us non-stop – husband – when some of us – wife – are trying to be serious) we talk, we play video games, we deal with autism stuff, I cry about autism stuff while he just stares at me with a blank look on his face like men do, but we are happy. I can’t imagine my life with anyone else.

So….happy pre-Valentine’s Day honey! I love you! Don’t say I never did anything for you for Valentine’s Day!

Rachel Said "Down"!!!

Rachel said a word yesterday!!! The first word she has ever said! She hasn't done it again since but it was pretty amazing. I did a Facebook post on it first because it's just easier to attach a video there. I usually do links the other way around but here is the link to the post and video on Facebook.

This was the post:

Today during therapy with her PT (ironically not her speech therapist) Rachel suddenly started saying the word "down." We were trying to get her to jump down a step in the therapy room (we eventually switched to throwing balls "down" because she was laughing too hard to jump.)
The look on her face and and the laugh she has when she's saying it, I have never seen those before in such a giddy way. I really saw it in her face that she realized she had said a word.
In this video I know you all can't see her face but take it from me...she knew this was something special. This is literally the first word she has ever said. She has said "down" at least 150 times today and she is super excited about it.
I have to have realistic expectations here, and I do, but there was a time where I wondered if she would ever say her first word.
Her situation is much different from Aaron. Aaron had some clear speech at one time (about 20 words or so but it was very delayed and he never put 2 words together) and he lost all of it. Then we discover he has severe speech apraxia.
We don't know what Rachel's speech issue is. She has never said her first word. Until today!
It was the most amazing feeling to hear her say something and see her face like that.

Link to Rachel "Down" Video

Autism and the Decision to Have a Second Child

Back in April I did a blog post for World Autism Awareness Day (it’s reeeeeally long FYI so if you’re going to read it go get some caffeine or something) and toward the end I wrote this,

“in our case had we known earlier that Aaron had autism we never would have planned another baby and we wouldn't have Rachel. So sometimes ignorance and denial are good things!”

When I wrote those words, Rachel’s autism was not even a blip on my radar. I was in even bigger denial with her than I was with Aaron. Even as we learned more and more about autism with Aaron I still never took a second glance at Rachel because she was totally different from him. She still is.

Today I was on a Facebook group I belong to and a mother of a newly diagnosed child posted several questions to our group. She seemed to be rather upset and lost which is normal. One of the questions was about genetics and autism but the other was whether she should have a second child because the first one has autism. She wanted our opinions.

I immediately thought of those words I wrote above because I never really clarified what I meant by them. They always meant one thing to me because when I wrote them Rachel didn't have autism as far as I knew.

I wrote in my reply in the Facebook thread that I would hope she wouldn't consider autism in her decision (she should I suppose if her child has other medical issues that require so much care that it is beyond her abilities to care for more than one but I don't know the whole situation) because I was someone in the past who would have, and it would have been a terrible mistake. Had I known about Aaron’s autism before we got pregnant with Rachel, she most likely wouldn't be here. Rachel was a planned pregnancy.

Here's where I wanted to clarify what I meant when I wrote what I did originally.

I wouldn't have decided to have only one child for the reason most people think. It is because of autism, but not about the potential of a second child having autism. I really never even thought of that after the fact until the whole genetics thing came up recently. The reason simply was because of my age, my husband's age and our long-term stamina for crying out loud.

My husband and I are no spring chickens. We aren't old by any means, but I was 32 when we got married and he was 41 (cradle robber.) We had major fertility issues and 4 years of miscarriages before Aaron was born on New Years Day in 2010. That put me in to my late 30’s. I was happy that we finally just had one baby - a baby I never thought we would have. If I knew he had autism I probably (I can’t say with 100% certainty of course) would have stopped at one so I could dedicate all of my time and energy to him and his needs without us completely falling apart as we aged.

I don't even want to think about it.

To say above that “denial is a good thing” is such an understatement there are no words. It literally brings me to tears to think that my precious little Rachel was so close to not being here because of a stupid diagnosis and my worries about our ages when we have 2 adult daughters that have very enthusiastically stated they will care for their younger siblings in our absence or lack of ability should the need arise. We didn't even have to ask. They even made the plans already. There was no need to worry about anything like that and you know what? I still worry about it. It's natural to worry and nothing could stop me but I worry much much less because there are no other people on earth I would want Aaron and Rachel to be with if me or my husband were gone or not able bodied anymore. I worry about shit every day for these kids. Especially things that require a voice to get them help. There are so many variables that I can't control...I'm rambling....anyway back to my point, thank God for denial.

They are both non-verbal, they both have autism. Rachel throws EVERYTHING. She is defiant to an extreme degree, she won’t eat, we spend 60% of the day trying to feed her, she has no respect for danger she actually seeks it out, she tries to leave the house whenever Daddy leaves and we live 20 yards from a river (we have deadbolts on all the doors, keys up high/hidden, etc.) she is by far the more high maintenance of this semi-silent autism duo. But…. she is the most amazing, stunning little girl. I always thought she was. If I didn’t think she could get any more incredible, since I stopped giving her vitamins, she smiles, she laughs, she finds humor in things, she gives hugs and kisses (on her terms but still….) she doesn't scream in people’s faces anymore (except Lori…ha) people can come to my house without her melting down every single time, she stacked blocks for the first time!! She never made a block tower bigger than 3 blocks high before now. The one she made the other day was almost as tall as her! She works on the iPad now and studies what she needs to do instead of just obsessively pushing the home button and then throwing it across the room. She doesn't whine all of her waking hours like she used to (no joke.) She is the most fun, sweet, silly little girl to be around and I adore being in her presence. I do enjoy my breaks, but I miss her terribly when I’m not around her and I can’t imagine what life would be like without her.

Is it hard to have 2 non-verbal autistic children? Hell yes it’s hard.

Do I cry a lot? Off and on.

Am I on anti-depressants? As of about 6 months ago thanks to a very enlightening blog post by Autism Daddy, yes I am and I feel much better! And contrary to the beliefs of this person who is forever blocked, I'm not on them because I hate my children, I'm on them because I hurt FOR my children and I worry about my children and their futures and it really does take a toll on your body and your mind.

Would I trade my children for “typical” children? Of course not.

I have never heard of an already loving parent who regretted having their second, third child etc. regardless of their challenges. Can you imagine a person that could look in to the eyes of their own child and think to themselves "I wish I hadn't had you."? If there really is such a person perhaps they weren't meant to be a parent in the first place and the adoption option would be a good way to go.

I’m not saying everyone should run out and have a second child, but I would hope that autism, either the chance of a second diagnosis or the splitting of demands between the first and second child, wouldn't scare someone away from their dream.

At least they are a dream for me and I’m forever grateful that I didn't miss out on it.

I do admire this woman for knowing she shouldn't just jump to one conclusion about whether it was a guarantee that a second child would have autism and just make the decision alone. I'm glad she was brave enough to come to a group of her new peers and ask for their advice. It's hard to not be pulled in a thousand different directions by a thousand different pieces of information after an autism diagnosis. The information system is so chaotic and disorganized that most of it, if not all comes from books or the internet and you have to pick and choose which little tiny bits apply to your child. That sometimes takes years to figure out. I only recently figured out some stuff with Aaron that had me totally confused.

They really do just give you a diagnosis and kick you out the door. No aftercare, no classes to teach about sensory issues, no nothing. Therapy helps the child with their developmental delays but the autism? That's all you. Learn by experience. Trial and error. Children basically treated like guinea pigs. I guess it's no surprise some women are scared to have another child after all. I fortunately have most all of Aaron's sensory issues myself so I sort of "got it" with what he was going through to a degree, but we are still learning every day and his sensory issues change all the time. It shouldn't be so hard to make your child comfortable in their body and their world.

I hope this woman stays in contact with us and uses her resources because other autism parents are the best source of support and information around this community. I really hope she isn't scared away from another baby because of autism. I wouldn't want her to miss out on her "Rachel." :)

About Me

I originally wrote this in March of 2014. My "about me" post/area whatever that I previously had on the main blog page was a pain in the @$$ to edit, and to find, so I decided to scrap that and put it in a blog post instead. I probably wasn't doing it right in the first place anyway. I really didn't edit it much here except to add Rachel's name to some areas because I wrote this before she was diagnosed and while we were still in denial about her (shame shame!) I thought I would post this here so I can put a link to it on the main page. (I'm teaching myself HTML right now...so I guess if you got here by clicking on a link that said "about me" I successfully taught myself HTML...yay, I'm smart!)

Hi there. I am a 41 year old business owner and stay at home mother of 4.

My oldest 2 daughters of the 4 came in to my life when I married my husband nearly 10 years ago. I call them my daughters even though I did not technically give birth to them because I love them as if they were my own (a line that was even in our wedding vows) so if I talk about them in blog posts and it's confusing because I'm calling them daughters, that's why. The confusing part lies in the obvious DNA connection between autism and me and the little ones and then people think why don't the older one's have autism??? yadda yadda yadda. Anyway...I also have an almost 3 year old daughter with non-verbal autism, and a 5 year old son with severe non-verbal autism. They also both have Sensory Processing Disorder (SPD) but on polar opposite ends which gets interesting.

This blog started out as being just about Aaron because Rachel hadn't been diagnosed yet, so the below part is mostly just about Aaron (and me) although I have added "and Rachel" in parenthesis in various spots.

I had 4 miscarriages before Aaron was born and while I was pregnant with Aaron I went in to early labor and was on bedrest for the last 3 months of my pregnancy. I of course was emotionally attached to him while I was pregnant but I tried my hardest to not become too attached. As each miscarriage happened I became even more convinced that I couldn't have a successful pregnancy. I went from partially detached emotionally, to my miracle baby in my arms after 36 hours of labor on New Years Day 2010. Once he was actually here the feelings of love that I felt for him were overwhelming and still are. Frankly they scared the hell out of me. That's a big rush of emotions all at once that I was not prepared for. Those feelings blinded my whole family to the very obvious signs that Aaron had autism from birth...but it doesn't make us love him any less. If anything we love him even more.

Aaron is happy, he laughs all the time. He plays non stop with cars, trucks and especially trains. He loves butterflies (but not in person, he will freak out.) He loves to be tickled and give hugs and kisses. Mostly he loves Special Agent Oso, Chuggington, Mickey Mouse Clubhouse and Lightning McQueen (but not the movie.) I think he is the most special person on earth.

Before starting this blog I would post or share various things about autism on my personal Facebook page along with my own two cents. After sharing something one day a good friend told me she always liked what I would write and share, and then asked me what the early signs of autism are. This started what I believe to be the world's longest Facebook conversation in which another good friend joined in. When all was said and done they both suggested I start a blog. I had been wanting to start a blog for a while so I decided to do it! The link below to the blog post I did for World Autism Awareness Day, contains many "copy and paste" excerpts from that conversation. I figured why type it all again when it's right there? It's long but it's worth a read and gives a good look in to our world a bit (prior to Rachel's diagnosis)...here's the link:

http://autismpants.blogspot.com/2014/04/i-am-making-you-aware-today-is-world.html

Many blogs and websites about autism are all about the "feel good" stories. I think those are great, however, there are not enough of the stories told that show our side, the severe side. When I posted things on Facebook before my blog, I always felt like I had to post these feel good things or people would think I was complaining about Aaron and I didn't want anyone to misunderstand, so I only posted things that showed the real and sometimes darker side (for lack of a better word) of autism from another's perspective (such as the blogger Autism Daddy) and then said "I can relate."

We live in a very rural part of Wyoming, over an hour drive from the nearest large"ish" city. There are very few autism resources in Wyoming. If it weren't for the school there wouldn't be any at all. When Aaron was diagnosed we were basically kicked out the door and left to our own devices, no after care instructions, just a couple of book recommendations. Everything I know about autism I have had to teach myself. No one has been there for us, no autism therapies were offered to my son until he started at the head start school and no autism therapies, treatments or doctors are within hours of where we live - and when I say hours I mean hours and hours - overnight stay in another city to see a doctor if we don't want to be home at 2 in the morning. I do everything in my power to help him but when you add in a 2 year old, (now also with non-verbal autism) it gets truly overwhelming at times.

With this blog I get several things I've never had before, a cathartic outlet, I can spread autism awareness to Aaron's end of the autism spectrum, (which is desperately needed) and I can share with anyone who wants to know, the amazing little boy that is my Aaron (and Rachel!!)

Keep in mind that if I ever use the word "they" to describe those with autism, I don't mean in any way to say that this is 100% of people with autism even on the severe end of the spectrum (I know in a very real way that it isn't.) Everyone with autism is different, but what I have learned about my son is that he is typical classic severe non-verbal autism and I am trying to bring light to his world and his struggles. It is also important to remember that I am not complaining about Aaron. I love Aaron more than anything on earth. I see autism and Aaron as two separate things. I see Aaron's specific type of autism as something that often hurts my child and I hate it. If there were a cure I would be the first in line to take it away. I am venting about what this type of autism does to my child.

Lastly, I am just a mother who is doing the best she can under the circumstances. I am happily married so no, I am not doing this entirely alone but we need money to survive and to pay for the things that our children need that our insurance won't pay for because autism therapies are "experimental" so my husband works at our business 6 days per week and he works hard so I am with the kids the lions share of the time.

This very last part may sound blunt but I am Italian so I can't help it...If you don't like something I write or my personal view on something and if it is truly that upsetting to you, please feel free to read another blog instead of attacking me. What I write is accurate to my feelings, my experiences, my children and my family and until you walk a million miles in my shoes you will never understand my family just as I could never understand yours....or judge yours.

If you have any non-judmental questions/comments for me I would love to read and respond to them! You can message me on Facebook or email me at autismpants@gmail.com and I'll get back to you. :)

Thanks for reading!!