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.

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

A couple of kids, a picket fence and a Suburban

All I wanted before I was a mom was a house with a picket fence, a couple of kids, and to drive a Suburban.  Well I should been more specific in my wishes, because I got all of those things and was over the moon happy.  Then autism invited itself to our lives and is a house guest from hell.

Seriously, I thought motherhood was going to be this amazing journey with my kids and I was going to get to run the PTA, run the sports activities, make sure my kids were social, and my house to be the Kool-Aid house (do people even know what the Kool Aid house is anymore?), where everyone wanted to play...... it was a plan easy to accomplish and achieve, I had this little June Cleaver dream going on in my head.

Then that fucking autism arrived, and I swear to God it cracked the parenthood foundation like nothing I could have ever imagined.  The autism arrived and it took away every shred of a dream that I had of motherhood.  I guess it's not appropriate to say, it took everything away, because I still am a mom - it EDITED my dream of motherhood.

Autism changed the plans that I would be the house everyone wanted to play at.  How can anyone play at our house, when we have non talkers, and we haven't grown out of Sesame Street at 7 years old, and instead of boy scouts, sports, and play dates we are in therapy after our 30 hours a week at school, we go to therapy 10 - 15 more hours a week.  It made the relationships we had very hard to keep up with.  My friends with typical children, don't want to play here and watch the same episode of Sesame Street we've been watching for 5 years or Cars, they have moved on.

Autism did however, put me in the lives of some super amazing autism families that are so awesome to my kids, and we all just "get it".  We went to a party or a gathering with them, and there is no need to "explain" our kid needs a moment, or why we can't sing "Happy Birthday" at a birthday party, or just figure out how to help each other out when we are trying to juggle all our stuff in addition to an over stimulated and anxious 6 year old that is ready to bounce himself off of the planet getting to the car.   We just have this amazing connection and understanding that I'm so grateful for.  I see the moms of typical kids and it's all a contest and gossip, and who made the better teacher gift, and just bullshit.  So that dream of motherhood I had, would have in some respects could have been a useless nightmare. Autism altered my motherhood in an awesome way because of other autism moms that would walk through fire with me and show me how to get out of it.

I lost friends and people "got busy", I also walked away from friends, because I got sad and hurt when they would say stuff like "he doesn't play with my kid, he ignores him",  "he looks so normal", "he's so cute, he'll just grow out of autism".  I politely and silently died a little bit inside, because the reality was that my kids have autism, it's not curable there are things about them that will always be different even if we are struck with some level of recovery.  One of my kids is severely impacted with autism and his needs are significant, parenting him gets more challenging each day, not easier like some typical kids as they get older.  Some of our family and friends will never understand that, and have politely put us on their "B" list of friends.  We don't get invited to parties, or we get invited an hour before parties start because they know we can't get a babysitter at such short notice. 

There are days when I long for a life of easy parenting (which I know is not reality).  Where I can just say "We're going to the movies", go and buy the ticket, some snacks and everyone sits down watches the movie laughs and or cries appropriately in the right places and we go home.  But with autism, we have to start prepping the movie about a week before we go, talking about the theatre, the darkness, the seats may move, it will be loud, the screen will be way bigger than the TV at home, and basically tell them about the movie we are going to see, because you see autism doesn't like surprise or the unexpected.  We may and have arrived at the movie theatre and the anxiety that comes with autism and had to leave before we could get autism under control to be courteous to the other paying customers.

After 3 years of desensitizing and working with therapists, and a ton of blood sweat and tears, and my kids finally go to the beach, and one of them goes into the ocean!!  So we have victories in some areas, we have to basically go through a war zone to get these victories and I relish and love every single victory that we have.

As Autism designed our life, and continues to design our life I usually hate what it has to do to our life, but I adapt and work through it until we get to a place of comfort and acceptance with whatever the issue may be.

My son's new favorite song is "Fixer Upper" from Frozen, and I swear, it couldn't be more appropriate when he walks around the house and sings  "You can fix the fixer upper with a little bit of Love"........ yes baby that is what mommy does all day everyday, tries to fix my fixer uppers with a little bit of love.   And sometimes a few tears, some laughter, and some patience, and some frustration, and some gentle coaxing and a lot of LOVE.