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.

The Self-Care has to be Real

Okay, so I did it. I got on the scale.  The scale for my whole life has been my nemesis. And it is a jackass.  Just sayin'.  But so am I.  

I am kicking my own ass for a little bit here.  Because this is just stupid.  I'm a special needs mom, and I don't have the luxury of being and choosing unhealthy for myself.  I just don't.  I am WIDE AWAKE and AWARE that there is no one in our life, NO ONE, that will take my kids on if I am no longer here to care for them.  So the fact that I choose to have ice cream at night, and not exercise for the last month, and FEEL SORRY FOR MYSELF, and SAD for my kids.  Is no longer acceptable.  I have to make the new NORMAL, healthy, happy, strong, CONSISTENT, and get off the pitty potty of tiny aches and pains, and I'm tired, and I'm annoyed, and I deserve that 4500 calorie meal.....  NO I DON'T.  I deserve a life of health (I survived cancer for crying out loud), I am 50 years old now, and I'm not getting any younger.

So today, I'm making myself accountable. This health and happiness thing is attainable.  This strong boy is under neath all this chubby, and this pitty potty is getting remodeled and we are going to have a super standard of attainable room.  It's not about how I look, or that stupid number on the scale (it kinda is) But this is DOABLE. I can, you can.



 

I'm a fat girl, I know what to do, I know what to eat, I know how to eat, and when to eat, and I don't need to (or have the money to pay for stuff that I already know).  I mean for real, don't all fat people know EXACTLY what to do.  Now I just have to change my mind and my choices.

I have lost 70lbs before, I have RUN 10 Half Marathons, I have beat cancer, and I take on the beast of Autism every single day. Exercising for 30 minutes and eating right ARE THE EASY part.  Staying on the track in this labyrinth of special need momming is the hard part.  I plan on slipping and falling, and I plan on having a hard time, and I plan on probably bitching a lot, but I PLAN ON SUCCEEDING.  I mean really - if I put it this way.  What more important that bowl of ice cream, or me making sure I'm here when Franklin is an adult?  What is more important lying on the couch and watching some SERIOUSLY stupid TV, or walking around the block and making sure my heart is healthy for the adult autism life?

2 days ago I walked up 2 flights of stairs and was so winded I almost cried.  That is effing ridiculous.  Like I said I have run 10 half marathons.  What in the hell?  I let a huge setback in my sons life take over my life, I consumed crap to cover up the hurt feelings, and fear.  

While my story isn't as fun or exciting as the mommy bloggers that got free tummy tucks, and lost 40lbs in a day. My story will be full of laughs, tears and probably curse words.  But it will be full of health, change, and success - because my kids are counting on my

So I can be a special needs mom that gives into the stress and can't guarantee that I'm around for my kids later, or I can be a special needs mom that makes our life happy, healthy and strong.  Because when I am happy, healthy and strong, so is my family.

If you're a special needs mom.  Self care is important, really effing important.  Self care is also family care.  I took SUPER BITCH to a whole new level this week after not exercising for 3 weeks, it's my release, it take the steam and frustration and sadness out of me.   

I know there are a lot of special needs moms that find excuses (because it's easy too, I GET THAT), but man I can't look at not taking care of myself anymore, when I realized there really is no one to care for my kids when I die.   My health, strength and happiness is THEIR health, strength and happiness.

So the journey start - Follow along on Instagram @realmomofoc.

Healthy Trails to you!

I Just Wanted

11 years ago when I found out I was pregnant with my first child, i just wanted to be a mom.  That was it, a mom, go to parks, drive and SUV, go to soccer games, have play dates, do homework, nurse the flu occassionally, fix wounds, spend time in the ER, and watch in amazement as my kids grew to be adults.

I just wanted to be a mom, but I'm more than that, I'm a special needs mom.  What exactly does that mean?  Well it means, that I get to do mom stuff on steroids in addition to a whole bunch of other jobs that are obnoxious because other professionals won't or don't do their jobs.

I am a doctor, because when you're handed an autism diagnosis you basically get a prescription for some speech therapy, a pat on the ass and told "See you next year".....with absolutely zero guidance or instruction.  Left to my own devices and a tribe of families, I've contributed to the massive improvement of my children.  I have had numerous doctors give me the line that I should just accept this is how it is, and once I did that I'd be happier - yeah, he got fired.  I just wanted to be a mom.

I am a lawyer, I have had to research education law, American's with Disabilities Act laws and statutes, special education, FAPE, IEP, Civil Rights, Restraint and Isolation, Abuse, Neglect, Malpractice, and Special Needs Trusts, because as unfathomable as it is, the professionals rarely want to give you what will be the best for your child, the will put you on a path, without all or any knowledge.  School districts lie, all of them, lie, and lie a lot about what their responsibilities are and aren't when educating special needs children.  I wanted to be a mom, that was all.

I would like nothing more than to be that mom that drops off my kid and goes off to work and know for the most part that my kid is in a classroom where he's getting taught, fed, and play time and a reasonable expectation that he is safe from harm.  All of that is out the window when you're a special needs mom.  Is my kid eloping out of class or the school to the street  and shockingly is the school staff even aware he's gone? Are the services like speech and OT being provided or am I just getting lip service? Is the staff being respectful to him?  Are the other kids being respectful to him?  When your kid is non verbal and can't tell you about his day you have to give people that you don't necessarily trust the benefit of the doubt, and hope for the best. 

Today I got a note in the backpack "F..... hair got pulled, he cried.  His aide comforted him, and he went back to being happy after a while"   ------ That's it.  I don't know how, why, when or for what.  Was there an antecedent?  Was it retaliation?  Was it instigated?  Was he a slow moving victim?  Where was his aide?  I got and get almost a nil amount of information and that is supposed to be acceptable.........No JUST FUCKING NO.  I challenged every and any school teacher, and administrator if their child is in a scuffle at school to take a note like that AND NOT ASK THEIR CHILD ANYTHING ABOUT WHAT HAPPENED.  Those are the shoes I walk in, usually through piles of horse manure.  I just wanted to be a mom.

I was livid receiving this note, because now I have to be an investigator.  My investigative skills over the last few years are now to CIA level.  I have myself have uncovered abuse, neglect and violation of my child's rights and that his IEP was out of compliance for YEARS under the assumption of the school district that since my kid can't talk, they don't have to give him speech, and he'd never tell me that he went to speech, OT, or PT.  They believe I'll never find out, they believe parents don't speak to each other.  I have actually had a principal with a set of balls to call me and tell me, I was not allowed to ask the staff how my child's day was............  Yup, I was not allowed to ask staff how his day was, after you wrap your head around that, know I continued to ask how his day was because I am the parent, the captain, the team leader, not some higher educated snob that I wasn't worthy of information on my son.  See I just wanted to be a mom, that was it.

I have had to be a scientist, and concoct foods that my kid will eat, and make them look, feel, smell like something that he would eat, but shouldn't eat.  I have full on Heisenburged myself and made some amazing concoctions to expand the repertoire of 2 foods that my child will tolerate.  I pain, worry, freak out, give up and try that my severely underweight child will begin to fail to thrive, and that my overweight special needs child will have health problems because I am failing at finding them items they will eat.  I just wanted to be a mom, it would have been so much easier to be a mom.

I am hazardous waste clean up.  Poop smearing - that's all.  Still happens.  Gross, enough over it.  I just wanted to be a mom.

I am insurance manipulator - codes, ICD-10, working the system to get my children the help they need without making us homeless.  I just wanted to be a mom, that was all a mom.

NASCAR driver to 14 different appointments a week, in Southern California traffic - just sucks.  I just wanted to be a mom.

Advocate, If I can't, or you tell me I can't - know I will get it done, it sometimes hurts me, it sometimes hurts you - but it will always be doing right for my kids.  I just wanted to be a mom.

Psychologist and shoulder to cry on - other moms with kids with special needs  we are each others support, because slowly most of our family and friends back out of our lives and all we have is each other.  All I wanted was to be a mom.

Team Captain - my kids have teams of doctors, therapist, teachers, aides, Speech Pathologists, Occupational Therapists, ABA, school psychologists and much to the chagrin of the school districts I am the captain.  It took me awhile to get my bearings, but once I realized a team member wasn't up to the task so doing what was right or the way it worked for my kids - they got cut.  I cut team members much quicker now I use my gut more.  And I praise and adore, and encourage the good team we have and try to keep us on a winning streak.  Being just a mom would have been so much easier and less exhausting.

And then I'm a mom - I have these 2 boys that rely on me for their health, education, welfare and care and I LOVE EVERY PART OF IT.  Autism is heartbreaking, and hard, and annoying AF, and exhausting, but my children are amazing.  I love the cuddles, the homework, seeing them thrive, helping them get up when the fall, helping them through rough patches, making the world a better place for them.

While I'm sad and frustrated right now at where we are with a situation at school, my kids give me purpose, and guide me and I love being their mom.  I wish I just got to be a mom, every other hat I have to wear, I don't love those jobs
like I love being a mom, but for my kids I'll wear any hat necessary, but I just wanted to be a mom, and I am a mom - a mom with amazing kids.

My boys and their HUGE year.

We have one more holiday to go and we can kiss 2014 goodbye, and to tell you the truth since our autism diagnosis 6 years ago, this has by far been the best year and the biggest learning experience and the most growth for the whole family.

The year started out extremely rocky we had horrible tantrums and episodes at school with Franklin and it was so hard because we had him coming off medication and moving toward a more biomedical approach to treat his autism, and it was awful and hard and I wanted to give up almost everyday.  However, we plowed through together and he made amazing strides, and it was a victory.

This was also the year that we were able to give him a voice via an iPad and ProLoQuo2 Go.  We are a work in progress, and everyone at school is not properly trained in it, but we have given the boy a way to communicate with us and it has eliminated a large percentage of his behavior, and it was the biggest dose of gratitude that I could have asked for.  I am moving forward with my education on the device and plan to become a "mommy expert" on the device, via other mommies and classes that I'm finding in our area.

Jackson has started Kindergarten this year and my baby is becoming a big boy and it was hard for mommy to deal with.  I love babies, and part of me has struggled to not "baby" him, and let him grow up and catch up developmentally.  Jackson has made friends, and he has some buddies, and friend that he initiates play with and engages with and I absolutely love all the kids in our lives that we work on our social skills and are building relationships with.

This year after 3 years of therapy and desensitizing them, and working and blood sweat and tears, we conquered THE BEACH.  OMG.  I can't say it enough we can go to the beach, and stay, and no one cries - except me - Happy Tears.

All our work, and all the therapy, and all the sacrifice and the boys are changing, learning, maturing and my believing in them and myself as a parent is making things happen.

My boys have grown and changed and launched so far forward this year, and they work so hard, and mommy found a louder advocate voice, and I feel like we have put them on a path where 2015 is going to KICK ASS.  Our team is fabulous, and I am so happy and anxious to move forward and let this be year the of recovery and improvement.

We were sitting at families house yesterday with all our cousins and friends and I was also forced to look at how different and challenged my kids are.  While everyone was playing on the swings and doing games and things that 5,6, and 7 year olds do.  My 6 year old was locked on some paper cut outs of letters and numbers, and was completely in his own world and wanted nothing to do with the other kiddos.  I saw the difference, I saw his cousins looking at him like he was a little different.  But yet he was HAPPY, and while it hurt me as a mom to see my kids isolating themselves, no matter what I did to try to get them to engage, they were not having it.  Those are my struggles, and my hurts and lack of acceptance of autism.  But even while it hurt me a little, my kids rocked this holiday season and  I couldn't be more grateful.

I got to also see a lot of our autism families kids rocking it,  we saw some amazing things this year in our little OC community, and I'm thankful, and happy and hopeful, and taking all that into 2015 and looking forward to giving autism a run for it's money.

Merry Christmas and Happy New Year

Rebecca

The Rant of a Mom with 2 Boys with Autism

Today I got this article from a friend posted on my Facebook page.  I know she had every good intention when she sent it.  I am not in the least upset at her.  However, the article did make my blood boil, as do most that come out about Autism.   Because I am seriously now just calling BULLSHIT on most of the medical community and the media on their ridiculous claims about Autism.

Are they afraid to say, “We really and truly don’t have any idea what causes this”?  Because for the love of Pete, that is the honest to God’s truth.  NO ONE KNOWS 100% WHAT IS CAUSING AUTISM.  There are a lot of theories, claims and minutia thrown out and the media spins it in a new way every 2 – 3 months.  Let me tell you what these little 200 word articles do to the parents of children with autism, it is the equivalent of ripping their hope and hearts out of their bodies and throwing it in a huge bucket of shame and pouring acid on it.

Let’s look at all the “articles” that I have had well meaning people send me in the last 4 years.  What causes autism? 

• Refrigerator mothers, cold, unfeeling women that do not bond with their child that causes the social ineptitude in the kids.   I’m Italian – that is INVALID immediately
• Age of the mother,
• Age of the father,
• Living too close to a freeway,
• Living near a farm that used pesticides. 
• Lifestyle choices of the parents,
• Mitochondrial abnormalities (GENETIC)
• Vaccinations, (ENVIRONMENTAL)

Shall I go on, or do you get my point?   I have also gone to Doctors, well respected Doctors in the autism community who told me that because I had breast cancer that could have lead to higher causes in autism, and after that little gem that made me feel like I had been punched in the stomach- he also decided to tell me after looking at my kid for 5 minutes in a tent at a picnic that my child was having seizures while we were sitting there. You must know, I wanted to punch him in the throat (after I spent 5 days in Children’s Hospital getting an EEG on my 5 year old too make sure he wasn’t having seizures, which he was not).  I also had this other hippie patchouli oil smelling Doctor tell me because I had drank even one Diet Coke in my life could have been the environmental cause to my kids autism. 

This particular article has a variety of things that are pretty much put in perspective as to what autism families are forced to wake up to frequently.

Melillo does believe that autism is often a result of environmental factors combined with genetic predisposition.  The most potent lifestyle factors are diet and exercise and inflammation in the body.

                                   

Wow!!  That’s ground breaking Doctor.  Autism is a result of environment and genetics influences.  Almost as original as designing a floral dress in the Spring.  GAWD.

Melillo identified numerous preventative measures parents can take to better ensure their child will not be born with autism. All of these measures are included in his book, Autism: The Scientific Truth About Preventing, Diagnosing, and Treating Autism Spectrum Disorder -- and What Parents Can Do Now.

“One of the things that we looked at are things like… pre-natal vitamins,” Melillo said.  “Taking pre-natal vitamins three months before and for the first month of pregnancy lowers the risk of having a child with autism by 60 percent.”

Did you pick that statistic up?  If you take your prenatal vitamins in your first month of pregnancy – Do the majority of women even know they’re pregnant the first 3 weeks? And the last 3 months of pregnancy you decrease your risk of autism by 60%.  So you have a 40% chance of autism if you DO take those prenatal vitamins?  Honest to God????? That’s the best you can come up with?  You have got to be kidding me.  All to publish a book, this is what you are offering people?  Why don’t you say it like this okay 40% of you women religiously taking your pre-natal vitamins you still have a chance of having a kid with autism? My God, isn’t that some sort of malpractice?  Doctors have to name some kind of cause of autism that blames the mother.  It’s INSANE.  It couldn’t possibly be the mercury filled, preservative laced vaccinations that are given at a ridiculously fast pace to a tiny little body under 20 lbs., could it?????
 
And for what I agree with on this article is this:

As for where the future of autism reearch is going, he said it will delve more into the mechanisms behind the disorder.

“I think it's going to go towards understanding what is really happening,” Melillo said, “and understanding how the brain regulates the body. You know, people don't realize that the brain regulates the immune system, your digestive system.  Most food sensitivities and allergies and immune problems really start in the brain, and I think all of this is going to go towards understanding the brain, how the brain affects the body, how this can affect somebody you know before they are having a child, and how this is actually affecting the child”.

So, all of you Doctors and your over weaning egos need to address this, and work together, I have been to and watched and heard way too many doctors dismiss treatment, therapies, and parental observations of their autistic children because frankly it didn’t fit into an agenda they want to promote.  You all need to work together and come up with a variety of treatments and things that will help autistic children.  You have to have heard the phrase “If you have met one kid with autism, then  you have met ONE kid with autism”.

I have 2 kids with autism and they couldn’t be on a more different places on the autism spectrum. 1 vaccinated and 1 not.  One is severe, and one is mild/moderate on the spectrum. One verbal, one non-verbal.  One is social (mostly inappropriately) and the other has no idea there are any other people on the planet than just a few of us.   So I feel like Autism x 2 24/7 has given me a voice, a rather newly intolerant voice for the CRAP that is thrown out at families with autism.  The way our world is rocked and changed forever the minute we get the diagnosis is enough.  To be forced every 6 – 8 weeks to look at a RIDICULOUS article stating and placing blame on everything that may or may not cause autism because some Doc or Researcher paid a Public Relations firm to get their name in the paper or their book some sales (I’m not trying to speak for any other autism families, just mine – but I think a lot of families share these same sentiments). 

 

So to the medical autism community, can you do all us autism families a favor and GET ON THE SAME PAGE, or at least don’t poo poo every possible idea that doesn’t agree with your beliefs.  Some stuff is working even if you roll your eyes about it.  Moms and dads of children with autism have done more to bring awareness and action to this horrible epidemic and to have your smugness thrown at us is infuriating.  We all need to work together – NO MATTER WHAT IS WORKING FOR THEIR KIDS.  Parents know what it working for their kids, be it diet, TMS, therapy, biomed, Son-Rise…. Ad infinitum.  Get on Board for the kids and their families, we are with them 24/7 not just the 20 minutes you see them every 6 months.

Thanks for the rant.

Rebecca