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.

Accomplishing August

Since my kids have been in school the last 4 years, August has SUCKED ASS.  It is too much time off, the lack of structure, the lax routine, those things effect my kids, and not for the better.  I have medicated myself, my kids, drank too much and cried too much every year in August.  I look forward to it, the same way I look forward to a root canal

So this year I took a different tack.  I have 4 - 6 weeks of no school, so 5 - 6 hours a day, I have to fill with routine, structure, learning and anything we can to keep autism at bay.  Every single day the last two weeks, I have exhausted my kids, and myself.  Exhausted kids are good kids (at least in my house).

My anxiety about August usually starts creeping up about Spring Break.  Wracking my brain and trying to figure out who I am going to beg borrow or steal from to provide endless activities for my two sons.  It took me years to figure it out,  busy and structured for my kids away from home is a MUCH better time for everyone than pent up, bored high energy kids lacking structure.  It is just a recipe for blood sweat and tears.  I have to keep my kids busy.  I have to work their brains, I have to burn off all their energy, I have to do my best to keep them happy.

We are almost half way through the month, and we are having success.  I almost feel like I can't stop smiling, but I know I probably just jinxed myself too.  All of our work and tears, and the kids therapy and all the stuff we have done for them for the last several years, is making this summer a fun, happy and eventful time for all of us.  The 3 years we spent desensitizing the boys to the beach - they now like to go to the ocean, and spend time there.  I thought would never happen!!  Amusement parks, they handle crowds and waiting because its a motivating environment for them.  We have worked for years on the movies, they are doing it (for most of the movie), we have worked on scooters, bikes, hiking and social situations.  OUR YEARS AND MONTHS AND DAYS OF ENDLESS WORK AND THERAPY AND TEARS have now turned into SMILES and LAUGHTER and JOY. 

This year they both went to Special Camp for Special Kids, and it was a wonderful experience for both of them, and I got happy boys back everyday.  I was filled with joy

We are still attempting to give Franklin a voice with ProLoQuo2Go, and it's getting better everyday, and has cut down his frustration a lot, and we are moving forward.

I am even attempting a vacation at a HOTEL.  God HELP me. 

I think the moral to this story is NEVER EVER GIVE UP on the kids with Autism.  Keep pushing, don't fear the autism, always be caring, and always be working.  It is the work that will make the fun come eventually.  Focus and find the things that motivate your kids, and build on them, and make your foundation strong, and keep doing it, and one day, your kid will walk into the freaking ocean in his clothes because you weren't expecting it to happen that day (that is exactly how it worked for us), I thought he would kick the sand around for 5 minutes and walk back to the car, and he walked waist high into the ocean!!! 

This summer is giving me hope back, recharging my batteries, and giving me the energy and will to get through the major start of school, and attacking communication full steam ahead.   Did I mention my older son is fully potty trained now?  Yeah, that happened this summer too, almost 8 years old.  NEVER STOP WORKING ON IT.

How is autism treating you this summer?

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.

Autism - Round 2

In the midst of my oldest son getting diagnosed with Autism, I had a baby, a boy, and the cutest freaking little cherub ever!!  Jackson arrived 2 weeks after Franklin's official diagnosis.  So I was at home with a newborn and a new diagnosis of autism and the doctor handed me a prescription for OT and Speech therapy for Franklin and said "see you in a year".  That's it, that's all our medical community has for you when you're newly diagnosed.  More on that later....

A year into therapy Franklin turned 3 - Jackson turned 1 and I went to the doctor just to get a physical because we switched insurance and I wanted to meet our deductible so we weren't paying a bunch of money out of our pocket for speech and OT therapy.  Well at the at physical and mammogram I was diagnosed with State 1 Ductal Carcinoma - Breast Cancer, and felt like I was living in a massive vat of SUCK FEST.

I had to take a few months off of my strong research and search for stuff for autism and deal with the inconvenience of cancer (and I'm almost 5 years cancer free, and do not take that lightly)  I couldn't think of the seriousness of cancer because it paralyzed me.  So for 6 months I was surgically treated and had 6 surgeries to remove the cancer, get a hysterectomy, and reconstruction.

So a 1 year old, a 3 year old 20 hours a week of ABA in the house a week, a full time working husband, recovering from cancer at about 15 months Jackson started to lose some of his vocabulary, starting to fall behind, and crying constantly.  He was different than Franklin, but I had this horrible feeling in my stomach that he was going down the path of autism.  He just wasn't doing the things that other babies did.  He would obsessively cling to one toy, crash his body into things, no sensation of pain, babbling gone and loss of about 30-40 word approximations that he had.

I felt him going into the abyss of autism, and one of our in home supervisors also recommended that we go to the neurologist and have him thoroughly checked out.  Because even though it was something we all suspected you don't get very far in the system without a doctors diagnosis of autism.

At about 21 months Jackson received his diagnosis of autism and it felt like I was hit in the stomach with a club, and it hit my husband especially hard.  But I had to plow through the feelings and get down to the road of treatment, and off to the races with 20 hours of ABA, and some OT.  So just when I thought I would be able to get out and move amongst people, I became more locked into my house than ever.  25 hours of therapy for Jackson, and 25 for Franklin, I was locked and stuck in home therapy or an office waiting room waiting for the kids to finish therapy.  I was almost a year cancer free, and started to fall into a very dark place, and very sorry for myself, and I couldn't see past the pain. I was lonely and angry, and scared, and determined to get myself healthy and help my kids.

ABA therapy and school have worked for Jackson and caught him up like they were supposed to.  However, the developmental and behavior challenge that make him "different" than neuro-typical children are there and in someways probably always will be.  Jackson's needs and abilities are on a total different place on the spectrum than his brother Franklin.  His needs are still significant and very different than Franklin's.  I heard this phrase after Jackson was diagnosed  "You've met 1 kid with Autism, well you've met ONE kid with Autism", and it couldn't be more true.  While both my kids have a diagnosis of autism it manifests itself so differently in each of them it is almost fascinating if it wasn't so baffling and painful.

Jackson is now 5 and about to enter Kindergarten in the fall.  Thank you for following us as we design our lives by autism.