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!!