Addition

"If it happens it happens..."
"Really?"
pause...
"Yeah, it's kinda now or never."
"Are we really going to do this?"
"Yeah, I think we are...."
"This is crazy or stupid or both right?"
"Yeah that's pretty much us though!"

If you'd told me a few years ago that we were going to have another baby I'd have straight up told you to f* off!  I spent a few anxiety filled years very overwhelmed, angry, bitter, sad, and hopeless, after Autism entered our lives.

Anyone who in good nature even hinted at us having more children got their head bit off or were scoffed at.  It wasn't because I didn't love my son, it was because I was exhausted and terrified.  Correction... WE were exhausted just in our own ways.  When you have to watch something horrible happening to your child and there's nothing you can do to stop it or fix it; My God, that is such an angst filled, guilt ridden, traumatizing experience.  Believe me, it leaves a mark, a very dark and deep one if you aren't careful!  To this day I still haven't fully processed what I saw happen to my son.  I don't think I will ever fully open that Pandora's box.

Anyway fast forward a few years; Z was now 6 and after almost 5 years of complete hell and insanity I finally started to emerge from living in my self induced Autism bubble.  All of the fear about Z's life and having a second child was still there but it's was starting to morph into a different set of fears.  It was no longer just the somewhat selfish fear that another child would also get ripped away from us as dramatically as Z did and I didn't think I could go through that again; rather it was now becoming the fear about what happens to him if something happens to us!?!

Z was now 6 and we were pretty confident that he was not going to be part of that lucky 40% that goes on to be independent in life .  I was starting to have panic attacks about the idea of him being all alone in life.  I don't know why my brain and biological clocked kicked in at that precise moment but it did and somehow I think we were both hit with the understanding that Z deserves to have someone else on this planet who has his back and loves him and we owed it to him to at least try and make that happen regardless the risks and regardless the possible sacrifices it could mean for us in the future.

Having D was the best, worst, craziest, scariest, most fantastically awesome decision we've ever made.  Z had been a surprise gift from the universe but this time it was a choice and intentional and it set the tone for a whole different pregnancy experience.  I had morning sickness!!!  I hadn't had much of that with Zander.  My diet was healthier, our lifestyle was healthier.  I embraced it as much as I was allowed to.

Little D was born in June 2014 and from day 1 has been a heart-breaker and a character.  In the spirit of this Thanksgiving holiday I will say I'm beyond grateful for him.  He is so dang happy I can't even stand it haha!  I'm pretty sure he thinks we're total idiots because he just gets this goofy grin and little eyebrow raise when he looks at us.  He has brought so much love and joy into our lives and yes a whole new added set of fears that we now have to wade through.

He is the total opposite of Z.  Z basically hit a brick wall in his development and went spiraling backwards.  So far D is consistently making progress but some of it is delayed for sure.  For me he seems to operate and navigate his daily life mostly on his terms.  Some of that is being a toddler and some of it isn't.  Early on I had concerns because he was doing a sort of hand flicking self stimulatory behavior but he grew out of it after a few months.  At this stage (17 months) he is not showing much for pretend play skills and has very few imitations, he has some sensory issues, is not following simple instructions and his language is delayed but he is blowing us away with so many other things!

He does things every day that Z either lost or never did at all.  Little D makes great eye contact, and LOVES attention, seeking it out constantly and always trying to initiate with us.  His motor skills are great, he helps get dressed, holds his own bottle, sleeps like a champ (THANK GOD!!!!) and he definitely understands the word NO! Much to our amusement and Z's horror D totally tries to assert himself as the alpha over his 8 year old brother and intentionally squawks at him to get his attention.

He's a ball of energy and personality.

So I know what you're wondering... is he going to end up on the spectrum like his brother?

Only time will tell.   

As a mom my mom gut says yes...,

My guess is that he will be at the high functioning end of the spectrum BUT for the moment I'm also going to try TAKING A LEAP OF FAITH and pray that his current assessment of  "Communication Delay" is all it's going to be. It was pretty surreal to be back in that situation where we were having people evaluate our child over an hour of play and conversation.  Deja vu doesn't quite describe it.  It wasn't as terrifying as when we took Z and I can't speak for dad but I know I was having some flashbacks here and there throughout the assessment.  Over all though it was a good experience I think, and he hammed it up for them which was cute to see and wouldn't you know the little stinker responded to his name for everyone which hopefully means he just has Mom's number haha! We will have a few more assessments coming up over the next few months which will be good to help measure his progress. 

This time we are ready to jump in and get to work.  THERE'S NO TIME for "deer in headlights" here, not this time!!!  A lot can happen between now and 2 years of age so one week at a time and as his journey continues I will share it with you!  Love and hugs to y'all; wishing  you and yours a wonderful Thanksgiving!

Hear no, See no, Speak no whatever!

It's hard to know how to act when you are around people that have a child on the Autism Spectrum.  Here's a few tips:

Don't act, just be you!

Try not to offer advice! (Unless you have something evidence based that's concrete that you know will help from experience)... because Autism parents spend countless hours on the internet, in book stores, talking to other parents, joining support groups, talking to therapists, doctors, teachers.... If it was that simple they'd already have done whatever you're most likely suggesting.

Try not to judge!  Remember before you had kids or before you got married how your friends with kids or friends that were married would say things like, "You just don't understand you can't until you get married or have kids of your own etc."?  and then you got married or had a kid and realized they were right ... you can't understand unless you've been through it yourself?... Same goes here.  You may not get why someone does or doesn't do something with their Autistic Child, you may not agree with how they choose to parent their A-typical child.  You don't have to and they don't expect you to.  You can't use typical logic with an A-typical person no matter how much you try.  Autism parents especially parents of children that are severely impacted learn that the hard way really fast.  They are forced to adapt and think outside the box and most of them are honestly doing the best they can. 

Don't say, "He doesn't look Autistic, you'd never know there's anything wrong with him."
It's actually not helpful or supportive; it's patronizing, negative, hurtful.
Instead try, "He's so cute, what a character, I love his smile"  something positive

Try not to snap, "Can't you make him be quiet?" or "Control your child geez!"
Take a second to think... do you think the parent is enjoying the scene that their child is causing? Do you think they aren't embarrassed and that their anxiety levels aren't already through the roof?!  Do you really think they wouldn't make him be quiet and calm if they could?  Typical kids make noise and run around like monkeys in public all the time, the only difference is that your brain understands what they're saying and can filter it out... with some kids their sounds don't make sense, can be startling so you can't tune them out.. 

Instead try, "Looks like you got your hands full, anything I can do?"
Even Better ASK, "So what's he doing? or why does he do that I don't quite understand what's happening?" or best of all... Keep your mouth shut and try offering a smile.  An understanding smile goes a long way and can instantly add relief to an already stressful situation.

Don't shake your head or roll your eyes, we do see you you know? haha  When you have a child that doesn't make conversation you become adept at reading body language pretty f'ing quick!  In the grand scheme of things is a few moments with a noisy kid really going to ruin your entire day?  That's pretty sad if it does.

Try to remember he didn't ask to be born.  His parents didn't ask to have a child with challenges but he's here and he deserves love and compassion and deserves to smile and laugh and experience life as best he can and the parents still deserve to live and laugh too.

Please don't pull away!  Please don't disappear!  Parents of children with Neurological Deficits and behavioral challenges can feel overwhelmed on a good day, maybe they don't contact you anymore because they are tired of not having anything new to say to you, time tends to slow way down for some of us.  Milestones can sometimes be few and far between. A lot of Autism parents develop social anxiety disorders. Being a Autism parent can be extremely isolating.  Some of it is self induced and some of it is literally people shutting them out because they are uncomfortable.

If you don't understand something just ask!  Most Autism parents are more than happy to explain their child's behaviors and tell you their story. You can never raise too much awareness!  Hugs and love to ya'll!

Next blog will introduce you to our newest family member D and we will compare these first 15 months of his to Z's and talk about our concerns and what's coming up next for him. 

STOP!

Autism parents need to STOP!
Stop tearing each other down!
Stop judging each other!
Stop undermining each other!
Stop the petty division!

Autistic vs. "Having a diagnosis of Autism"
Autism vs. Asperger's
To Medicate or not Medicate
Floor Time vs. ABA
Mainstream vs. Strategies
Strategies vs. Regular Special Ed
Something wrong vs. perfect in God's eyes
high functioning vs. mid or low functioning

Seriously!!!!  What's hard for you is hard for you; what's hard for me is hard for me and just because those challenges or ideals or feelings with regards to our children may be different does not make them wrong or any harder or easier than the person you're having a conversation with.

I don't give a rat's ass what other people do with their child or how they think their child should be defined, it's none of my business and it certainly doesn't effect how I view my child or the decisions that we make as far as taking care of him.

I wouldn't do half the things that other parents do with their children on the spectrum, that doesn't mean they're wrong, it just means our children need different things as each one of these amazing beings are completely unique to this world.  I would never fault another parent for doing what they hope is the best thing for their child so please don't fault us for doing what we hope is best for ours!

Mother's Father's Day ... Meh

It's a bittersweet holiday for a lot of parent's.  I have friends and relatives that have children that are not living any longer and I cannot imagine what the holidays are like for them.  Hell I cannot imagine what daily life is like for them.  You also have thousands of families like ours.  Families where days like Mother's & Father's Day only exist if someone else steps in and makes it happen.

That's us; Zander does not have any concept of any holiday other than the part where he gets candy from the neighbors or presents under a tree or a cake to eat.  The true meaning is lost on him and on a day like Mother's Day he isn't going to walk up to me or his dad and say, "I love you Mom/Dad" or "Happy Mother's/Father's Day" or "You're a good Mom/Dad". 

Nope for my husband and I it's the little card that his teacher helped him make at school or the act of one of us taking him to "buy" something or make something for the other that makes it happen. To be honest mostly we just hide from it.  I refuse to lie... it's kind of a bummer.  It's hard to go to the park or out to brunch on those holidays and see all the families celebrating their loved one.

Yes I know it's kind of sad to view it that way.  It's kind of silly to feel this need to participate right? You shouldn't need validation like a national holiday to tell you you're a good parent but guess what?  I'm human, and it's human nature to want what others have and to say "hey I belong too!

I don't know, I guess I would just like people to stop and think... do you know a special needs family?  If you do maybe reach out and send a little card on Mother's or Father's Day.  Help their child make something.  Babysit so they can have a day to themselves. Give them a hug or a shout out.  You might just be the only acknowledgement they get!  All parents work hard, raising kids is work whether they are typical or not but special needs parents have some added challenges that most people don't and I'm here to tell you it can be a very lonely road that only other special needs parents understand. 

So this Mother's Day and upcoming Father's Day help me pay it forward this year.  REACH OUT, spread some love! 

Hugs!

When the phone rings...

Buzz, buzz, what the hell is that buzzing? Wait it's the phone. Who the hell would be calling at 8:20am on New Year's Morning?  I see it's a local number where we are from but we are out of town for the gig E played the night before. 

It's one of those moments where you know that you don't want to answer as your stomach hits your throat but you also know that you had better answer and quick.

"Hello?" Groggy me...
"Hello yes this is Officer So and So with the Sparks PD". 

Fastest way to go from groggy and sleeping to WIDE F-ING AWAKE AND SITTING UP ever!

My first thought is someone is dead.  Grandma was watching our kids at our house and someone is dead!

"Mam, I found your number in an I-pad.  I have a little boy with red hair and blue sweat pants".

Hearing those words now my husband is sitting up too and he doesn't even have to talk, the look on his face tells me he is thinking the exact same thing I am! Stay calm breath, stay calm breath F*ck me please don't be  dead and for a split second I stop listening because my heart is racing and then as quickly as I can pull it together I cut him off and say, "That's  my son Zander he has Autism he is non verbal!" 

The irony is he knows his name, who his mom and dad are, his phone number and his address but only if he is asked in a specific way.

"Mam, we found him walking down V Blvd. in the road with no coat or hat." I realize the officer is still trying to figure out what's going on!

"Yes um we are out of town, my husband is a musician and he played in CA last night.  My mother is watching the kids.  He is ok?" V Blvd is a very busy main road out to our stupid not so gated, gated community.  People drive like total jerks on that road all the time.

"Yes but we couldn't hardly get any information out of him.  We were only able to contact you because of the number in the I-pad.  Where do you live, where is home?"

Huge sigh of relief!

"We live off Vand H in the little gated community.  How far down V Blvd is he?"

The officer tells me a cross street that is unfamiliar to me and tells me it's quite a ways up from our cross street and then he tells me someone is pulling up.

"It's got to be my mom"... as both my husband and I can hear here sobbing hysterically from the other end of the phone.  I'm not sure I've ever heard her that hysterical before.  I ask him if she has the baby with her and the officer assures me she does and then puts her on the phone and she's so sorry and I just tell her, "It's ok, just GET HIM and GET HOME, it's ok".

After I am assured he is releasing Zander to Grandma I tell him I'll be getting on the road and back home as soon as I can; I hang up and we just sort of sit there in shock and it takes a few minutes for it to sink in and then my husband hits the nail on the head as I of course burst into tears of relief and also of worry for the future.

"He's only alive because it's New Year's Morning and no one is on the road" he says, and I know he's right.

I've shared multiple stories about wandering and written more than one blog post, and face book posts about him over the last couple of years and always someone tries to act like it's no big deal because their kid got out once when they were little yadda yadda.

I love all my friends and family but it's time to say... IT IS A BIG DEAL!   It is a big issue for us and for many other families out there.  Zander is almost 8 now and this is an issue that we very well may have for his whole life!  Wandering is a real issue and one that needs to be looked at more closely in our country.

There IS A DIFFERENCE when you are talking about someone like our son who can't or won't answer the police when asked his name, number anything.  They had NOTHING to go off of other than the number in his I-pad and if they hadn't found him anyone could have scooped him up or he could have been hit by a car eventually because he has no concept of the dangers around him!

This easily could have been a much different phone call!  We are very lucky AGAIN!  but the odds are not in his favor folks!  My poor mother feels so awful but the truth is it could have happened to anyone watching him.  It's happened to us more than once.  For not being able to answer the officer he is a smart little bugger and an opportunist.  He waited until she took the baby upstairs to change him, put on his shoes and went out through the garage door.  It's happened to me before, it's happened to my husband.  Most recently I had just jumped in the tub when I heard the garage door.  I had made sure he was safe and occupied in his room before I started the bath.  I grabbed a towel and went after him as fast as I could.  I can only imagine what the neighbors think of us and YES because I know you are wondering...  we do have security measures in place but you don't know determination until you meet someone on the Autism Spectrum with something stuck in their head that they want to do.  There's no swaying them.

The worst part is it's totally innocent on his part.  He wants to go somewhere plain and simple.  He isn't trying to get lost or scare the crap out of us.  He isn't even trying to be disobedient.  When we've caught him and asked him in the past "Where are you going?"  His answers have been all over the place. "Go for walk", "Wal Mart store", "Grandmas House", "Go to Park", "Dressed for School", even "DISNEYLAND"  he was seriously going to walk to Disneyland!

Needless to say we will be purchasing a not so cheap GPS bracelet that allows us to set parameter alerts and track him if he crosses the lines we've set. 

I've said it before and I will say it again:  Why if we can put a GPS chip in our pets, why can't we put one in our loved ones that are less capacitated and have issues with wandering?

I also think about what may have happened if Zander wasn't still sort of little and cute.  What if he'd been a teenager they were trying to detain and he didn't comply.  He would just look crazy to them they may even assume he's on something and dangerous.  There needs to be a voluntary database for first responders to access with info on our kids so that they know how to handle the situation especially because each person on the spectrum has totally different issues with following directions, behavioral issues, sensory issues.  Maybe a universal alert bracelet? I know that there are all sorts of identification products out there but there needs to be something that is instantly recognizable to someone like a police office that they will know it's Autism right away without having to get close enough to read a tag or bracelet.  Something that could possibly keep him from being tackled, tasered, cuffed and stuffed possibly even shot?  Z doesn't always take his I-pad with him... thank God he did this time!

Please share, help me reach out to others going through the same issues, help me bring awareness to those who would never have a reason otherwise to even think about it. Help me advocate so that maybe we don't end up getting a much worse phone call in the future.

Wishing you all a wonderful 2015 from our family to yours hug your kiddos tight people, hug them tight!