Looks Like We Made It......

Well in about 2 hours, I will be able to say, that I successfully made it through August and Autism!!!  Since my kids have been in school the past few years August has always blown.  I dread it and start getting anxious about it in March.

Well this year, this summer, and all about it, were by far the best.  My kids are getting more mature, they can handle more, we have exposed them to a lot of things, and frankly my older more severe son - he does better away from the house than he does cooped up.  So I booked them solid everyday, we did stuff morning noon and night.  I had swim dates, play dates, trampoline parks, amusement parks, beach, lake, and anything I could think of to keep them stimulated, exercised and busy.

I am exhausted physically and excited that we made it through this August with few meltdowns, more smiles, more fun and hopefully we made some memories that my kiddos will carry with them.

It's the Little Things.......

 I have heard the statement in any different ways from many different people.  "Every time I think I have it bad, I think of you and get really grateful."    Seriously?!  WTF, Why didn't just grow a pair of balls and say what you really think.   You really think my life is a suck fest of epic proportions and you are really glad you're not me.  Or at least that's what I take away from that annoying as hell statement.

Do people really believe a special needs parent is enough of a peon where it's just okay to tell them right to their face you think the life they have to live is bad?  Where has the support and tolerance gone in our community?  One can not possibly believe, or be that inept or self centered to think that  telling someone that their life is so messed up that you're glad it didn't happen to them is a supportive thing to say.

I know intellectually that most people don't even fathom that this might be hurtful or something that would make a special needs parent sad.    I had another woman this week ask me if I felt cheated.  Totally fair question,  and my answer was a resounding "no, I think my kids were cheated."  But this life that was designed by autism didn't cheat me because it is my normal.   It's my baseline, both my kids have autism I don't have anything to compare it to.  Do I think sometimes I was robbed of motherhood?  Well I am still a mom, right?!  So no I wasn't cheated of motherhood, I think that I a dream and expectation that I had of motherhood was changed, but no cheated, not at all.  Jealous sometimes of how easy mothers of typical kids have it, but no I don't feel cheated.  Left out, yes I sometimes feel left out because there are so few of our friends that are tolerant of our children, and most of our friends kids now look at our kids like they have 2 heads.   But cheated no, I get to care for my kids on a deeper level than most can or do, and it will be for the rest of my life.  So no cheated is not the word I would use to say how I feel.

I will tell you something about my life that is so amazing and awesome, that a lot of typical parents take for granted and never appreciate.  It's the little things..... Like when I said "thanks" to my 5 year old and he replied, "you're welcome" without the prompting a speech therapist, a behaviorist, or me.  On his own he spoke a reciprocal statement and I think I was over the moon about that for 2 weeks.  When my 7 year old was watching TV with me last week, and laughed at the appropriate place and at something funny on Nickelodeon - after I picked my chin up off of the floor, because I realized the huge amount of cognition just opened up and shell of autism that was just cracked, I smiled and cried happy tears for days and grew a big sack of hope for him.  I don't see parents of "typical" kids in awe of their kids for the little things. 

I have to look for gratitude most days, and do my best to work at finding the joy in my kids and the awesomeness that truly comes with their hard work and therapy, and I'm probably about 85% successful at doing that.  Let's face it, some days are hard, and I forget to look for the good, but I'm getting so much better at it   So to have people repeatedly tell me that they are grateful they aren't me, I will try to grin and bear the words that aren't meant to be hurtful but re-injure a broken heart.

Smile and Ignore

I have to smile and ignore when I hear

"I don't know how you do it."
     Well what exactly would you do?  Leave the congnitively impaired child of yours in a cage or to fend for themselves?  Yeah it's better I ignore you.

I have to smile and ignore when I hear someone say
"Whenever I think I have it bad, I just think of you and get grateful"
    Why don't you just come up to me and say, WOW!!!  Your life is a SUCK FEST of EPIC proportions.  - See it really is better that I just smile at you.

I have to smile and ignore you when you say
"Do you think he could be like "RainMan" and you can take him to Vegas and count cards?" - Yes people ask me this
    That was a fucking movie - See better if I smile and pretend I didn't hear you

I have to smile and ignore you when you say
"Do you know what group home you'll put him in when he's 18?"
    No but I know what nursing home I have picked out for you.  - A smile is so much more pleasant

 I have to smile and ignore when I hear
"My kids eat what I make or they just don't eat, I'm not a short order cook"
   Well fuck you - Smile is better

For the most part, I do try and promote awareness and teach people about Autism so they are aware, informed and know, my kids are people too.  There are days though, when Autism has just kicked my ass, stomped on my soul, and abused my kids, my family, my house and I have nothing good to say about it, so I have to elect to be quiet, because sometimes autism makes me not nice or patient or dignified.


 I am so incredibly grateful to some of the people in my life that accept my kids and me and the autism and all that comes with it.  I love and appreciate and respect the tolerance and patience that it takes to include us in events.  I love our friends that have taught their children about the similarities in our kids and not the differences, I love that our friends are kind to my kids, I love our friends that just accept us because after all we are just people.  We are a little different, but we are not less.  I appreciate every single person in our life that goes out of their way to do something to learn about my kids and autism, and especially those that offer support and help for them and us.

There is a lot more good going on than bad.  Autism makes some days incredibly challenging, but everyday we all get a little better  but somedays, the best I can do is smile and walk away.  Please understand, it's not it, but I think enough of you on those bad days to not respond.

What They Can Do...........

"There needs to be a lot more emphasis on what a child can do instead of what he cannot do." - Temple Grandin



It took me a few years to let this sink into my thick skull and to practice it in my life and the lives of my children.  I was so devastated and driven when they were diagnosed with autism, I couldn't see past the nose on my face most of the time.  I was consumed with how much they couldn't or wouldn't or didn't do like "typical" kids, I was blinded to see the amazing accomplishments that they accomplish everyday.

My kids have been in some kind of therapy or school for about 40 hours a week for years.  Sometimes down to 25 hours a week, but basically they are incredibly hard working and work so hard to learn the simplest tasks that most families take for granted.  For example when I hear a "typical" mom say that it took a WHOLE week to potty train their kids, I basically want to sock them in the face.  

We've been working on potty training for about 5 YEARS!  But in the last couple months we have reached such amazing milestones with it, I'm ecstatic.  I will leave out that I have to basically clean up and bleach an entire bathroom after he poops in it, and tries to clean himself......... He isn't in a diaper anymore, and that was the CAN DO, I have been working for.

We have been rigorously working at desensitizing my kids to the beach for about 4 years, and every spring and summer for the last 4 years, I would watch my friends go to the beach with their kids and frolic in the ocean and spend a day making castles and I was envious and jealous and so sad because I thought we would never see that day.  My kids would panic and tantrum when I would get south enough on the freeway that they could see the ocean, the panic and tantrums would start.  We couldn't drive on Pacific Coast Highway, for the love of God, we live in Orange County California, how are you expected to never go on PCH?????  Well this summer it happened, after hours of work, therapy, blood, sweat, tantrums and tears, my kids are going to the beach, and LOVING IT!!!  THEY CAN DO THIS!!! THEY CAN DO THIS!!!

We have worked for years many hours every week on so many different things, and it's so much easier for me to feel sorry for myself and them and look at the differences and the "can't" and the "don't" and the "won't" - just because I think to a certain degree it's expected from moms of children with special needs.  Well I'm sort of over the victim mentality, it hurts my head, my body and my soul.

My kids can do some amazing things, that to most people and children might not seem spectacular, but after the amount of work my kids put into something to accomplish it, I'm in awe of the incredible things they can do.  

My younger son READS every sign and book and truck, and paper that comes in front of his face, before he is in Kindergarten, 

My older son, can climb a mountain, and swim to Catalina, and he smiles and laughs and loves us!

My younger son, wants to hug and say hi to everyone that he sees, and some people find that annoying, and some kids are rude to him because of it, and he is starting to get hurt feelings when kids aren't nice to him.  Even though it's not my favorite thing, it's a huge accomplishment for a child with autism, to recognize his feelings, and to know that he isn't being treated like he should be.

My older son loves to be outdoors and will hike, swim, walk and play happily for the most part, without the typical 7 year old whining that goes along with being alone.  He will entertain himself and enjoy nature without a toys and the distractions that so many other kids need to just be at peace.  

My older son, while he can not speak, he is learning to communicate through a device, that just is opening a world to us and to him, we did not think was possible, and it is changing all of our lives.

We are building a life for our boys on this foundation that is autism, and all of the therapy, school, work and exposure to things are what is strengthening them as people, and helping their autism.  I know their autism is never going to go away, but I have hope and know that there is nowhere to go but up and they are always going to be a work in progress.  We have no room to be complacent, and lazy, to keep them at a place where they are always moving forward and learning, we need to always be working, and always be looking at their strengths, and building on what they CAN do and making a conscious effort to NOT focus on what they CAN'T do.  It's friggin depressing, if I spend everyday looking at all the can't do's and don't do's and the won't do's  in our lives, I'd never muster the energy to even get out of bed.  So a change of thinking is what is happening to me now.  Acceptance is the key, autism is the lock and I have accepted the autism and all the comes with it, good and bad, and for today at least I'm looking at how far we have come, and excited about the successes we are having lately.

We CAN go to the beach today, so we are - PEACE OUT - xoxoxo