My Kid Did the Unthinkable....

Yesterday after a few errands and taking my 9 year old for a haircut, we stopped off to pick up a few things at the market.  Now he has autism,  I don't label kids as low functioning or high functioning, because there is no such term - it's something parents have made up to make themselves feel better and school districts use to enable their lack of services they will give your kids (but I digress). 

I manage with and adapt his "quirky" behavior as best as I can, and work on constantly, the kid rarely has a break from some kind of activity or therapy.  I expect certain things, statements, stims, behaviors and perseverance depending on our activity or location, and have the tools after years of observations and training on how to limit or redirect.  So I'm pretty much on guard and ready to ninja warrior autism at any second when we are out in public.

We did our shopping, our routine, or obsessions on certain items in the store, redirecting, moving forward and then as we are checking out, he asks the checker for some stickers "May I please have some stickers, please?"  - So I am cockily beaming at his politeness and manners.......then the little asshole (yes sometimes my kids are assholes, and it's okay) SPITS on the checker.  Yes, you read that right, he spat on her.   There was no rhyme, reason, or anything that a 25 year old behavior therapist could smugly lecture me on that would prepare me for this mortification.  I mean I'm an autism mom, I live with a pretty fair level of mortified everyday depending on how awful the "perfect OC mom" stares are on any given day.  But this level of mortification left me stunned, and amazed at my parenting skills that I didn't backhand him right in the store or in my car.  I just drove home crying.  That was all I could do.  I mean, I wasn't prepared for that, there is no parenting book or blog that tells you how to "embrace the spitting on store employees"...  there isn't.  I'm not the mom that just accepts "well it is autism, he isn't responsible for what he does".  Nope, my kid knows right from wrong, he does - I constantly drill him on what is the good choice vs. the bad choice. 

This is not the first time he has done this.  About 3 years ago, he used his birthday money to buy an extremely over priced Star Wars set.  As we checked out at Target, he spit on the cashier.  We apologized, and in my humiliated state I walked right over to the returns desk, and made him return the toy and give the money to me.  You would think that would have taught him, because he cried about the Star Wars crap and his money for about a month.

So today my walk of shame will be back to the store with my son to give her the note of apology from my child, and hopefully the manager will allow me the 2 minutes to take this learning experience for my son and for me as a parent.

Because autism isn't an excuse, if I want inclusion everywhere in school but don't expect appropriate behavior and use inappropriate behavior as teaching opportunities I'm not doing my job as a mom.

I will rally through this day of him crying that he doesn't have an Ipad or his "Cars", but he will learn, it may happen again in 3 years, but he will remember this consequence.  I don't have a trick but my work today will be to get him to understand WHAT he did, that it was WRONG, MEAN, and UNACCEPTABLE.   I'm doing my best at being real, there is not plastic surgery, medication, or ignorance that will hide autism, I just have to take it on a day at a time.  We are Autism Tough, and while Autism may have won this round, I intend on winning the fight.

Happy Warrior Day

Mothers Day, it's here, and I waited my whole life to be a mom for the perks of a holiday in my honor...  but after a decade of motherhood, and autism, and special needs, there are moms though that I want to thank and honor, and as I sit here and write this I am choked up because there are women that I have battled this labyrinth of special needs and made and build the path that has helped me be the mom I am today.  There are not enough ways to express my gratitude. 

The moms I am specifically referring to are my fellow Autism and Special Needs Moms. My TACA Tribe. You're so much more than just moms, you are fierce warriors who wear many hats.  I mean being a mom is hard enough, and rewarding (sometimes), and infuriating (sometimes), and for the most part we all as moms do a great job.

But the warrior moms, especially you pioneers that have walked, and trudged in front of me. 
Just thank you.

Thank you for showing me it is possible to get through the worst day of your life, diagnosis day.  Thank you for showing me how to put my big girl pants on and "handle it".
Thank you for being there when I need to cry.
Thank you for making me not feel like I am a lunatic.
Thank you for showing me how to communicate with my kids.
Thank you for showing me how to advocate for my kids.
Thank you for giving me hope.
Thank you for giving me a way to walk.
Thank you for showing me you're not perfect.
Thank you for losing your shit sometimes.
Thank you for making autism manageable.
Thank you for showing me that I don't have to let "them" put my kid in the "limited" box.
Thank you for showing me that there are endless possibilities.
Thank you for showing me the importance of consistency.
Thank you for reminding me setbacks aren't permanent
Thank you for accepting the flawed human I am, and helping me anyway
Thank you for putting me back together when I fall apart.
Thank you for calling me out when I was whining too much.
Thank you for being my instruction manual on this journey.

Despite all the challenges you women go through everyday, you are my rock, my teachers, my friends, my therapists, and every single day I'm grateful that I was put on your path.

I have learned that I had to become a teacher, speech pathologist, occupational therapist,  maid, lawyer, driver, nurse, cook, and trailblazer for helping my kids learn and thrive.

You have taught me to believe that HOPE is always possible, setback don't define my kids, my kids are human and deserve to be treated as such - and it's my job to make sure that the "professionals" do.  You have taught me coffee is life, and sleep is a luxury I will enjoy someday.

When I started this journey, I thought the "professionals" were on our side to help our kids.  I soon found out there is one box that they want to put all of autism in and either ignore it, or blame parents or autism for ANYTHING that may happen to them injury, sickness or behavior wise.  What I soon realized was the only side, or tribe I had were families like ours on a journey with no real map or directions but you were building roads, bridges and byways for the families to come behind you.  There isn't a way to measure this much gratitude.

I can't express enough that you women, moms, chicks like me, wanting the best for our children when most of our families, friends, and loved ones had written our kids off.  You people you moms, made me a mom, a warrior, a lawyer, doctor, teacher, therapist, advocate, insurance adjuster, and made our autism not a scary place, but a place of hope, when we were hopeless.  The lesson and phrase of "families helping families" that is on every shirt I own from "TALK ABOUT CURING AUTISM" @tacanow is the thing in my special needs parenting that is constant.  I can call on anyone of the moms I know from TACA and know I'm going to get off that phone with solution, or at least a direction to solution.  When I call most doctors or professionals I usually get off those calls in a heap of tears.

So to the warriors, thank you, for making me a warrior, thank you for helping me become this mom with all the moving parts that autism requires.  Happy Mothers Day, no not Mothers Day.  HAPPY WARRIOR DAY, you are warriors and I'm proud to be in your tribe.  I honor you and I love you all.

A Tale of Two Autisms

The new CDC autism diagnosis number that came out is 1:36 kids is diagnosed with Autism.  I have Two with Autism. Two boys, two autism diagnosis, many many needs, very different needs and very significant.  It's enough to make a person go crazy, cry, laugh, and go through a myriad of emotions that could get you diagnosed as koo koo for coco puffs.  No lie.

First thing.  I can't stand the high functioning, low functioning term.  "Oh is he high functioning like Ben Affleck on The Accountant"?  - No, he's no a psycho killer - no - that is not the autism we have. Seriously!

My younger son was diagnosed with Autism at 2.  He had delayed speech, and Atypical autistic  behaviors which met a criteria consistent autism.  He was put into early intervention therapy ABA, speech and OT and it helped move him a long, not long he started using words, then sentences, and playing appropriately with toys.  Not with kids, but he could be hell on the Hot Wheels Track, he enjoyed that a lot.

It was pretty easy to find things that motivated J to work for in ABA, to find things that he was interested in, to shape behaviors, language, and social interactions.  While I don't think ABA works for everyone, it did and continues to do it's job moving J along where is is able to function in the community and have significant and meaningful peer and family interactions.  Over years, and many many hours of therapies, success, failures, blood, sweat, tears, calls from school to pick up, horrid behavior, obsessive behaviors and all around autism. We have made strides, big, strong, and forward.

We have made mistakes, we have sacrificed, tried, stopped, retried, and had setbacks, and overall we always make some kind of progress, not perfection, but progress nonetheless. We are at that point here, where I am making the big leap of faith and putting him in activities with neuro typical peers.  Something I should have done years ago but he really wasn't ready.  He has his social issues, but we basically threw him in the deep end of the pool, and I released the reigns a little, and it's amazing.  The elation that comes to parents of children with autism when our kids are able to do things that their typical peers take for granted.  I'm living that euphoria of proud parent, amazed at that kid and how hard he has worked to get this far. 

I am also living in the part of how hard it is for me to watch him struggle, see the deficits he has when around his peers.  But there is so much hope and I see a place in the world for him, and that makes me happy.  I just need the world to see his place in it and that is my fear, the world isn't the most comfortable place for a kid like him.  I know that there are bullies, I know that there are teachers that will not understand what he needs to learn, I know that a lot of people won't understand the stereotypical behavior he exhibits when trying to get used to a new place.  But as the number has just grown from 1:36 children now have autism, I pray our world gets it's shit together and understands this.  This is an epidemic, I wish it was considered as such.

My older son F, has the kind of autism, that no one talks about, that no one wants to see, that most pretend isn't there.  He was diagnosed at 20 months.  He is almost 11, non verbal, and his circle of people that love and respect him and understand his is small but awesome.  We had a lot of misguided horrible teaching professionals that were allowed to marginalize him as a human, decide he wasn't worthy of working on academics, put him in a room instead of giving him services he was entitled to like speech and occupational therapy, because one woman determined he was "unteachable", and they couldn't work with a child like that.  Rather than figure out a way that would work for him to learn, they determined after 2-3 sessions he wasn't worthy of their time. 

After as severe injury occurred at school he was deemed "collateral damage" in an unfortunate incident.  His injury has been marginalized, "he was severe before the accident, he's still severe, mom needs to move on"  Not even referring to him as a human, because he doesn't have a voice.  It's a hard place to be as a parent knowing that these are opinions

Fighting to have him treated human has been the turning point in my life.  Medical professionals, school administrators, and many people in the community don't understand severe autism and don't want to.  Many Medical professionals won't look past the autism to see what is medically wrong, when their clearly is something wrong.  Constant crying, tantrums and the wailing of pain, isn't just autism, and that is in many cases what we are expected to accept as diagnosis.  The doctors that will look at the severely autistic as a whole patient are rarely covered by insurance and it prohibits many families from seeking that help, and there are no guarantees that their treatments will work. So it's a tough place to be in  as a family.

There are a lot of family events, parties, graduations, weddings, that are very uncomfortable for him to attend, sometimes we can go, sometimes we can't.  Most of our family now doesn't even notice if he shows or not. But it's clear that when he's there it is stressful for others that he is around, so we are now forced to separate and divide as a family, or leave him home with a sitter.  It's sad.  He knows he's being left, he would like to be with us but those events are too much for him in many cases.  We have had some success with him, but you never know until he gets there.

So as a parent of two with autism, there are such highs and lows that come with this parenting, some in the same 5 minutes.  One kid is striving and moving forward in his therapies as he should, the other can't remember where the bathroom is in the house.  We are forced to divide and conquer, we love our kids equally, and both have needs that while very different are very significant, no matter what their abilities are or aren't.  As the latest CDC numbers reflect the numbers of kids diagnosed with Autism as 1:36, it's frightening, its taxing, it's going to crush the systems.  So while my 2 autism's are something.  1:36, is an epidemic, and everyone needs to care and demand that answers happen for this generation. 

You have 20 minutes.

The caretaker mom, dad, grandparent, the special needs parent, the single mom, the parents that have to do 1000 times more than the mom of typical children or grandchildren.  Hear this, if this is all you read, all week, you need to read this.

You matter, you are important, your health, your mind, your body, all matter.  They matter most to the person or people you have to care for.  I know that it seems like that is an incredibly challenging concept to wrap our brains around.  As caretakers to our family, in addition to being parents we have conditioned our minds to put our "special" person as a priority and that our own needs fall last, even lower than last a lot of the time. 

Well I'm calling us all out.  We need to wake up, we need to step up, we need to practice some self care and self love.  I'm not a therapist, and I'm not a doctor, and I'm totally not into psychobabble at all.  However, since Carrie Fisher died last week and her mom died the next day it has consumed my mind.  That us the caretakers of those with special needs really have that one wish "I want my kids to have a happy life, and that I live just 1 day longer".  It's true, my biggest fear and the thing that keeps me up at night is, who will care for my kids when I'm gone?  Carrie Fisher had many mental health, and addiction issues, and I'm sure her mom was a bundle of nerves for 60 years, because that is what moms do.  But how do we outlive our children if we take crap care of ourselves?  We can't always be put at the bottom of the list.  We put the needs of our family and those with special needs so far above our own, it's actually stunning that we are even able to care for those that need the care. 

This is my 6th year being cancer free, and that put a shot in my ass to take care of myself.  Because I really have no one that will care for my children if something were to happen to me and it makes me cry every single time I think about it.  I made a commitment to myself 5 years ago to lose weight, and eat healthy blah, blah blah....  and I did, I lost weight, I became a runner, and drank too much to cope, and had to get sober, and I gained some weight back, and I fall of the exercise wagon, and I stress eat, and I am far from perfect.  But you see, I'm real, and I fall, and I get back up and I keep getting up until I succeed.  I don't set goals, I just try to do good for myself and everyone in my family one day at a time. 

If you're a care taker, parent, grandparent, foster parent, mom, dad, aunt, uncle, you matter, you need to care for you.  Don't add something to your list that overwhelms you, because we are so easily overwhelmed because we all have the weight of the world already on our very narrow shoulders.  But make tiny changes, give up one crap thing for one good thing, and then another, and another, and another.  It's the tiny things we do for ourselves, that will end up being big things, that make us better moms, and caretakers.  When we feel better, we do better, we help more, we conquer more, we feel happy (which is undeniably challenging in  most of our cases).  You can do this, you deserve to feel good, you deserve a smile, a laugh, and good in your life.  Find something that you can handle and do it for 20 minutes, sweat for 20 minutes.  I didn't have 5 dollars to put together years ago, so I couldn't do any of the fancy for sale exercising that everyone was hocking and telling you it's the only way to get healthy.  Well HORSE MANURE, you can sweat in your house, you can walk around your block.  I think I started pushing my kids in their stroller and pushed them about 1000 miles getting my 20 minutes a day in. 

Slow and steady changes, and little tiny progress is good, moving forward is good. Keeping yourself up on this list is not a bad thing, everyone will survive if you take 20 minutes for yourself.  I swear to God, they will.  Your health matters to your loved ones, it really really does over everything else, because you can't care for others if you can't care for yourself, there will be a day where your body says NO.  My kids are just getting bigger and stronger, and faster, I need to be able to keep up.  I need to be able to be healthy. 

My pair of running shoes and weights has been the best therapy I could have every asked for.  Exercising sucks, seriously, I don't know anyone that loves it, but the after, the feeling after is what you will fall in love with, the accomplishment, the endorphins, the strength, the wonder "holy crap I didn't think my body could do that".  That's the awesome, that's where your change will happen, because when you change your mind, everything else will fall into place.

Just try it, do you have anything to lose?  The crumbs on the floor will be there after your 20 minutes, the paperwork will still be there, the cooking will still be there.  You have 20 minutes.  20 minutes a day will change your mind, your body and your spirit.  Your family will notice, you will notice, and who doesn't just want to feel better?  I promise this to you. 

A Very Special Merry Christmas to the Autism Mom's Everywhere

Merry Christmas to you moms!  People will say it to you this year at your friend and family gatherings.  You won't hear it, you'll possibly acknowlege it, you will be more concerned making sure your child with autism is behaving socially appropriate, or not undressing, or smashing ornaments on a tree, or going into someones room and getting in their bed, or licking all the cookies on a dessert table, or just freaking out because they are on sensory overload because you're on your 5th day of no structure because of school break, and more than likely we showed up having to use dry shampoo and took a hooker bath because we couldn't get a minute to ourselves to actually get a full shower and blow dry in.

The holidays and the weeks before and after bring a lot of strife for us mom's.  I personally used to always love Christmas, and I still do, but I dread the holidays with autism.  I'm going to say out loud here something that I think most of us think but don't dare express out loud.  I don't want to go to anyone's house, it fucking sucks.  My kids are overwhelmed, they are ignored, starred at, or expected to pull it together and act "regular" for a little while.  Rarely if ever do concessions get made for them,  people are loud, music is loud, houses are hot, clothes are expected to be perfect when my kids would rather be in sweat pants and a tshirt.  Kids don't play with them, and when my kids try to play with them the "typical" kids usually a cousin walk away, stare, and whisper about them. I have to pack food, clothes, ipads, and bring half of their possessions and creature comforts so I may be able to inhale a semi warm meal (who am I kidding, but I can dream right?)  We bring fully charged Ipads, whereever we go and try to make my kids as comfortable as possible. 

While we try to engineer a socially acceptable appearance in public and make my kids play or participate, they are square pegs trying to fit into a round hole that I didn't get to help carve out.  (Rarely, has anyone asked my opinion of what my kids need) So as we arrive at our relatives homes with our kids meal packed because of a special or limited diet, and listen to everyone "Oh my son was a picky eater, but he ate when he got hungry",  or "you really spoil them.", or "you're not even going to make them try the food."  We smile politely and cry inside.  OMG, I would love to just show up and know my kids would eat the mashed potatoes that you slaved over, and not have to bring half of the contents of our house to keep my kids regulated. Do you know how much easier it would make my life? No they don't they don't know, they don't get it, and they won't and it's cool, I didn't get it either until I was thrown into this labyrinth of autism with no guide.

No one knows how easy it would make your life at the holidays, because everyone is so damned stressed out trying to make it perfect for everyone.  So don't feel alone, the beautiful people are just trying to keep it beautiful and we're trying to keep our "real" from destroying their hopes of a beautiful holiday.  We try to coexist peacefully, and sometimes it works and sometimes we are leaving in the 2nd care we've brought to a gathering because autism had different plans than listening to our overly shrill family.  So some of us spend our holidays home alone with the children we love to the moon and back when all our family is celebrating and having a great time.  Sometimes we cry about it, sometimes we're relieved to get away from some annoying people.  It's all good, it's really just one day.  I

Know that there are a lot of us feeling the same way, doing the same thing.  A friend asked my asked my kid what he wanted for Christmas and he said "paper".  Yup paper.  My friend tried desperately not to look at him like he had 2 heads, and I just had to tell her, it's pretty awesome, I'm not running around like a fool trying to find and over rated over priced Hatchimal that will be broken and forgotten about in 3 days.  Paper and Pillows, that is what my kids want and love for Christmas, it is what it is.  no it's not the picture that the beautiful people try and sell us.    But the smile on my kids face when he opens a ream of paper. I'll take every single day of the week. 

My kid really really wants the Nintendo Classic, and Nintendo is such a jacked up company they make like 50 units of the thing before Christmas time, and some jackholes go and buy all the 60 dollar toy and try to sell them for $300 on ebay.  I don't play that game, and make up certificates that it'll be delivered later. So we all have our struggles. 

So while this season brings and overwhelming trough of emotions good and bad, know you're not alone, your kids aren't alone, and if they want and enjoy the bubble wrap that came in box rather than the gift, the world will not stop rotating on it's axis.  Do what you can do, do what your kids can do, make that round hole for yourself, don't make this ONE DAY defining for what you or your kid are and aren't capable of.  Try to make the day as good as you can for everyone, including yourself.  We moms deserve a smile to have one, we do.  Watching my kid open paper is my smile, sometimes leaving early with my other son whose autism is more severe, and the kind no one understands, is my smile, sometimes it brings me tears.  But it's just one day.  I've come to learn that the family and friends that care about my family and my kids come over on a regular day and don't care that my kid is comfortable in one sock and will only wear sweat pants and has to have all the lights off in the house.  Those are the "Christmas Days" that I will take over the manufactured stressful nightmare that the actual holiday can be.

Be kind to yourselves, don't put undue expectations on yourself, your family or your kids, it's just one day.  And you know what?  This year, my children have stepped up and shocked and surprised me after years of many many lonely tears on holidays.  So Merry Christmas,  feel the hug I'm giving you.  Remember it's just a day, and don't let it get you down.

I Remember When.....

I was reminded today about those early days in our autism diagnosis.  Man those were possibly the biggest suck fest filled days ever.  Because what you get from the "medical community" is a paper with your autism diagnosis and a prescription for some Occupational Therapy - maybe, and told they'll see you in a year.  That's it, then you're on your own.  You're on your own, with the only resource you have is yourself, and trying to find the Yellow Brick Road to get back to Kansas. 

Every single parent handles that diagnosis differently, husbands, wives, step-parents, grandparents, godparents, guardians.  We all have our own coping mechanisms and they are all different.  There is not a right way or a wrong way, because there is no instruction manual when you have a diagnosis from autism.  Sure you have professionals that lay out a black and white plan for you - but those so called professionals must have not learned that autism is not black and white, there are many many different shades of grey, and not one of the kiddos fit inside a specific box that they built to try to fix the "problem".  I foolishly and wide eyed believed them with 2 years of therapy and early intervention my son would be mainstreamed by Kindergarten - that was the plan for all kids with autism................  that's another heartbreak for another post.

But I remember the heartbreak and the loneliness that was crippling.  I remember feeling like I was losing my son more and more everyday.  I remember grieving and sobbing over the dreams that I had for my kids, I remember feeling like my motherhood was robbed from me, I remember when I saw one of my friends stare at my kid for the first time in shock, I remember not feeling happy for my friends when they shared their babies milestones because I was jealous and sad, I remember not taking phone calls from people because I didn't want to talk and I didn't want to listen, I remember a couple of years of being a prisoner in my house to autism therapy.  I remember being jealous and angry at my husband because he got to go to work and get away from it for 10 hours - he sometimes a lot of times stayed 18 hours.  But what I remember most looking back on it was my fear, I remember the fear, it paralyzed me, literally I couldn't move, I couldn't talk, and I could barely breath.  If you're an autism parent, I know you felt that too.  That's the stuff we're never supposed to utter out loud.

When pre-school started and I actually got to go out of the house and see people other than the 22 year old therapist that came to my house everyday to help my kid make eye contact and stack blocks (they did much more than that).  I arrived at school, and there were moms there.  Mom's like me that had that look on their face, "WTF just happened to my life".  But it was that time in pre-school, when I saw other moms other families, dads, grandparents bringing their kiddos to school, hoping and praying and expecting the best for their kids.  My old friends, didn't understand my sorrows, my worries, my hurt, my grieving, and my immeasurable love for my kid.  But the mommies and daddies I met at drop off and pick up were top notch, they pulled me out of the hole that I was in and brought me back to life.  They put light in my eyes, and hope in my heart.  They gave me a voice and ears - to speak and listen about ANYTHING.

Never thought times like this would happen, friends make it possible

The journey that autism takes you on is a blind one. There is not absolute map, there are not guarantees, but just like in anything in life, find the people who are doing their best to move forward.  There will be all kinds of people you meet on your journey, and that's the point.  There is no reason to do this alone - the number is 1 in 68 kids has autism. There are a lot of us, don't be sad and alone, there is hope, there is help - so many different kinds of help, there are options, many of them. Do not ever give up hope.

I am the mom of a severely autistic child and a mild to moderately impacted child.  Their needs are both significant, but very very different.  There are so many options and paths to take and the professionals while they mean well, they are just not nearly as compassionate, empathetic and none have the foresight to combine treatments and therapies or "think outside the box".  Autism in many many ways has made  me feel like the most inadequate mom because I never know if what I'm doing is good, right, or working or hurting my kids, and it constantly makes me second guess myself.  My other warrior moms pull me out of my paralysis and help me move forward. They understand, when I can't find a babysitter, they understand and cook a meal for me when my son hasn't slept in 6 days, they talk to me on Christmas because one of my kids hadn't pooped in 5 days and he was miserable.   I can't tell you how much other autism families have added to our life.  I don't know where we'd be if we didn't have families helping other families.  Amazing organizations are out there to help, all you have to do is look past your tears and fears.


If you're a new mommy or even had your diagnosis for awhile and are sad and scared or just exhausted and overwhelmed.  We get it, we live it, and you do not have to ever be alone again.  I don't want to be that mom that jumped into the bottle of wine and swam around for a couple of years because I didn't know what to do.  I still don't always know what to do, but there are so many families that have trudged the autism road in front of me, I follow - and I follow and sometimes I fall but if I get on the path and stay on the path, I'm always going forward and I'm never alone. 

To all my autism and special needs parents that I've met, facebooked, instagramed, emailed and see all the time.  Thank you, for being part of our lives you make our lives better everyday. 

Don't Get out the Party Hat Yet

Every April we go through Autism Awareness Month, or Autism Action Month.  Because I have Autism in my family with my 2 children, we are acutely aware of autism and all that comes with it.  I'm grateful that April comes and promotes at least awareness of autism.  Even though the numbers of those diagnosed with autism have risen dramatically in the 6 years we've been in the autism arena, I'm shocked how many people have no idea about it, and not that it's their fault or anything.  I didn't know anything about it until I was baptized by the fire of a diagnosis.

I love adore, and worship my kids and would walk through fire or to the end of the earth for them.  I've participated in some hokey therapies and treatments and would do every single thing over to make sure I left no stone unturned to help my kids beat autism.

What I have never understood, and I get a lot of flak for is I do not and have not found the celebration of autism.  While it's something my kids have, it doesn't have them.  We work hard, and constantly and consistently to help crack the shell that is surrounding my children.  One of my children is also severely impacted by autism, non verbal, and his life is extraordinarily challenging, there is NOTHING about his autism that is a party or deserves a parade.  It's horrible some of the days and nights he goes through with his neurological torture.  I don't even think some parents of children with autism that are verbal and high functioning can even relate to this part of the autism spectrum.  Severe autism is nothing that is to be celebrated.  I wouldn't celebrate someone getting a stage IV Gleoblastoma brain tumor, as autism, there is not cause or cure., I don't celebrate MS, I don't celebrate ALS.  I show compassion and to the people effected by these things, they're the same.  They are life changing ailments that make your life different, and not always for the better.

The celebrations that I do have every day, are the lives of my boys, and every single accomplishment that I have learned to not take for granted.  The first time my son used a tissue to wipe his nose instead of his shirt sleeve.  When he picked up his mess from a meltdown and put it back in the toybox, the hugs I get, the new things we works so hard to get them to try and have success (even after years of therapy).  I celebrate the accomplishments, and the ways we find joy and give them happiness.  I celebrate our family and how even though we are different and have to take 2 cars everywhere we go in case autism hijacks our event, we are a family, and we do autism together great.  The friends we have made in the journey of autism, are amazing because autism is isolating, and these families have all come together to help, hug, and understand in the lonely heartbreaking world of autism.  I couldn't even imagine going through this journey without some of my autism mommies and daddies, we are friggin AMAZING, even if the rest of the world doesn't get it.

The things that keep me up at night and I'll never be able to celebrate.
What will happen to my kids when I die?  Who will care for them, they have family that doesn't even bother to try to know them?  Will Franklin ever talk?  Where will they live?  Is someone bullying them at school, and they don't even know how to tell me?  Is a teacher or therapist not giving them their treatment because they know my kids can't tattle on them?  Is my house secure enough so they can't get out?  What was that sound?  Where is he?  Did he eat? Did he poop?  How did he get that bruise?  Is that a seizure? Is that an allergy?  Is he sick?  I wonder if something hurts him?  Are the professionals telling me the truth?  Will this treatment work?  What if this treatment doesn't work?  Will this treatment hurt him or affect him negatively????  See the racing mind NEVER EVER stops.  I'm more fearful of the autism,  because the autism hurts my kid sometimes.  Literally and figuratively.   Those are all the fears worries and doubts that I have to overcome before I can put a party hat on and whoop it up about autism.

What autism has given me is a strength I didn't know was possible, a perseverance of a warrior, and a belief and faith in my kids, and my God that I didn't know was there.  So those little things I celebrate, but Autism, I just don't, I just can't.  My kids are more than autism, and I don't just want them to be that label I want them to be Franklin and Jackson and I want the world, their school and our families to see the awesomeness that I see in them everyday.  So while yes I will every single solitary day adore, worship and celebrate my boys, I don't yet have a reason or willingness to celebrate the diagnosis, I may not ever get there, but celebrating the successes of my kids, and helping them overcome the obstacles that autism throws down in front of them every day.  I celebrate the victories we have over autism.

Something different

A new school year to me always brings a maternal level of anxiety, and this year especially so.  My "baby" started Kindergarten, and it's a big deal.  He's growing up, he's making his way and I'm not sure I was or am ready to make that break.  I miss him during the day, but am immensely enjoying him when he comes home from school, with a new phrase or quirk that he has learned at school.  So I'm excited and apprehensive.

This year my kids are at different schools, so I have an added thing.  I have 2 groups of moms to get to know, 2 schools to volunteer at, 2 PTA's, and 2 teachers, and 2 principals.  All of that is enough to give me a case of the runs alone.

My stress exists on many levels.  The first day of school there are the "over achieving" moms that have gifts, and donuts, and chalk board photos of their perfectly coiffed children, in their amazing Nordstrom outfit.  I just have never been able to get all the stuff done that most moms do get done.  I accept it and know it is what it is.  I have come to accept that what my weaknesses are and what my strengths are, and that perfectly gift wrapped, and snack mom, well it just ain't me. I'm not a size 2, but I'm fit actually fitter than most 46 year old cancer survivors, I'm not the most popular blog in OC, but a lot of people like my blog, and tell me that.  My kids aren't the kids that other kids are dying to come to our house and play, but they are friggin' amazing every single day and can work circles around most of the over indulged Orange County children, they have their issues, and I couldn't be more thrilled to be their mommy.

And while I love to peruse on Pinterest.  I have a feeling that it is an evil plot by men to get women and moms to workout, cook and decorate immaculately.  And I ALWAYS feel like I am falling short.  I don't always have the perfect meal cooked, I slack on my workouts and take a couple of weeks off, and the only thing I can DIY well is drive a car.  Very little creative juices flow in my brain, and the stuff I copy off of Pinterest is just pitiful.

This year I am going to try and take a different tack, and instead of the constant feeling of inadequacies that I have to deal with everyday.  I'm going to try to just know what my limitations are, know I am good at some things, and if it's not wrapping 24 presents on time for Groundhog Day, sometimes I just am able to throw some cupcakes in a box, deliver them for no reason and they are met with the same smile as the Pinterest holiday porn tha is t peddled so viciously to moms.

I am practicing at getting better and doing things one day at a time.  I do not and will not have all of my Christmas shopping started, done and wrapped in the month of October or November.  But I will think small and finish the accomplishments.

Autism and life to me get overwhelming, and what I am going to do this year, is just get back to basics, and not making myself insane trying to keep up with the moms that are CLEARLY popping their kids ADD medication (just kidding).    I have finally come to the level of acceptance that is going to bring me some peace of mind.  I'm not a size 2, but I'm fit. I'm not the most popular blogger in California, but I love getting emails from the people that love what I write.  My kids are not the most popular kids in OC, but they are the most amazing kids I've met.  I'm grateful right now, and I haven't felt that in a long time.  My life is a blessing, and I need to realize that I am all I am and all I can do is be as awesome as I can everyday.  I'm attempting to be awesome, as awesome as I can and as awesome as I think awesome is.  If you think it's awesome it's a bonus, but the most important is that the people I share a house with get the most awesome me I can bring to the party.

I am going to make an effort to make sure I get my exercise, at least 20 minutes a day, cook 4 meals a week, and shuttle my kids to and from the 14 different activities and therapies they have a week.  I am going to focus on my kids smiles more than on keeping up with people that don't care if I am competing with them.

So to the 2014/2015 school year, we are going to attempt a BE AWESOME year, and hope you do too.

Rebecca

I am Different but not Less

 

Different Not Less………..  Those words have haunted me since I saw the movie “Temple Grandin” on HBO a few years ago.  It came out a few months after our autism diagnosis with our first son.

I try to put those into action all the time and sometimes it is a real chore to focus on all the obstacles the kids have overcome, and how much they CAN do.  I sometimes focus on the deficits and the delays that are so evident when we are our in public or with kids we used to play with who have developed and matured out of our world.  But since this special needs motherhood comes with no map on how to control your thoughts and feelings about the neurological torture our kids go through with autism,  I do the best I can and get a little bit better and am more positive and more hopeful for my kids everyday, even on the days when I shed tears.

 

My kids are on a peak with therapy and moving forward with therapy and we are so very busy with appointments and stuff, I’m overwhelmed and happy.  I’m on a new path of trying to expose the kids to everything I can to help with their behavior, and tolerance of new things, so we can live a life outside of the walls of our property if we choose too. 

Sometimes our events that I try to take them to are a hit, sometimes not so much.  So even my motherhood is DIFFERENT than most, but it by NO MEANS LESS THAN ANY OTHER MOTHERHOOD.  Sometimes the special needs moms get the shaft by society in more ways that I can count.  I can’t be that mom I always thought I’d be, I can’t be that blogger that gets to go to all the cool crap, I can’t be the mom hosting the bad ass pool parties and play dates, I can’t be the mom whose kids are winning contests and trophies and going to sports tournaments all over the state.  I just can’t those aren’t my kids.  I am the mom that has two kids with autism; I’m the mom whose kids are more comfortable at home.  I am the mom who needs to be with her kids because sometimes I am the ONLY ONE that understands how to care for them. I am the mom who has therapy at her home everyday.  I am the mom who has children and a husband who are VERY high maintenance.  I am the mom who gets elated and excited and over the moon happy when I get a smile and hug from her child.  I am the mom who does a happy dance when we have no potty accidents.  I am the mom that when my 4 year old asks to go to Disneyland at 6am – TAKES HIM instead of going to school.  I am the mom that struggles with so many things.  I am the mom who puts on the brave face when I feel like I may crumble.  I am the mom who is jealous of those of you who get to go out and have fun on a whim with your kids.  I am the mom who envies those of you bloggers that can leave your kids and go to fun events. I am the mom who will never stop looking for answers and will do anything and go to the end of the earth to help her kids.  I am the mom who loves her life and embraces everything in it – good bad and ugly.  My motherhood is different than most, but it certainly is not less.

It has taken me a lot of soul searching, mourning, to get to this place, but I think I’m finally there, and my kids realize it.  I love my life, our friends, our families,  the kids are building relationships and I’m thrilled.  Things are different, they are getting much better.

Rebecca