My Last Long Meaningful Run

My last long meaningful run was September 4, 2016, it was a Sunday, it was the Disneyland Half Marathon.  I was so excited training for it and doing it, and I had a Sparkle Athletic skirt that I got for it, I raised money for my favorite charity (Talk About Curing Autism).  It's always a thrill to do a RunDisney event, and get treated like cattle and put in our pens at 4 am.  All joking aside RunDisney events are magical and I've seen people that couldn't on a great day run 13 feet bust out 13 miles in a Chewbacca costume - for real!

Two Years Ago, two long, life changing, therapeutic growing years.  This race was sort of my runner come back, I had lost my mojo, and wasn't all that into it, but I trained and was ready felt strong, and couldn't wait to run. 

There is a a whole ritual to participating in a Run Disney event, and going to the Race Expo, and picking up your packet.  On this particular race, I was lucky enough to beat the crowds and go on the first day of the Expo, right after I dropped my kids at school, I was able to head over to the Disneyland Hotel and pick up my packet, and then I got this phone call hysterical phone call in the basement of the Disneyland Hotel. 



My son was injured at school and rushed to the ER via ambulance.  I was 30-45 minutes away from him, and felt like the shittiest mother on earth.  My sons life was forever changed, our lives were upside down, and I was struck with a horrible sadness, inadequacy, and feeling of failure and an incredible disappointment in myself and so many that I thought should have had his back.  The injury and incident, changed us, me as a mother, us as a family, and traumatically effected my son who is still recovering.  But this is something for another post.  He is on a good path now and almost fully recovered, so we are grateful for that.

But to race day.  It was 3 days post accident, the day after my son was released from the hospital, and I decided with consultations with my husband, that I could leave for 6 hours and run the race. 
13 - point - 1 friggin miles of tears. 13.1 miles of PTSD, 13.1 miles that I didn't want to run, I wanted to be with my little one.  I wanted to hold him and protect him and the mom guilt kicked my ass for even doing anything like that for myself.

I came home and basically hung up my Hoka One's and went on recovery mode for my kid.  I had to learn a whole new injury, syndrome and how to help it recover with an already challenged kid with severe autism.   I was just a journey I needed to take, and I don't really have a reason or excuse why I didn't really run anymore.  The few times I tried to take a run, my head went to a dark place, so I just went to the gym or my garage and worked out 1 mile from where my child was, and not 30 miles from him.  It was weird, I felt like I had a little control of his safety if I was close to him, I can't even explain my shattered feelings and reasons why. 

But anyway, my body needs it now, my mind needs it now, and I think my son and husband needs the me that used to run, and like to run, and felt empowered, independent and strong when I run.  I ran 10 half marathons.  I didn't win them, I didn't even come close, but I finished, and from the fat farm I came from it was quite the damn accomplishment.  So I'm gonna add running back into my repertoire.  I'm not sure I'm ready for a race, but I think I can see myself doing a Turkey Trot on Thanksgiving, and maybe a half marathon on Super Bowl Sunday. 

My son is recovering from a traumatic brain injury, my chubby buns can get out and run.  Like I always said my $100 running shoes were the best therapy I ever had.  I'm back, I feel it, I need it, I am back.  Let's do this!

Back to School ---- With Hope

I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

Being a special needs parent and starting a new school year is incredibly stressful, the uncertainty, the new teacher, new room, new kids, new schedule.   The district I live in is incredibly negligent and irresponsible where Special Education population is concerned, the anxiety goes on all year.  You never know what is going to happen at school, and frankly the schools are no longer about education.  I haven't figured out what the hell they're doing but they are not interested in educating special needs kids, they are more like a mediocre babysitter.  So we prep, prime the kid, and hope and pray for the best.  The jury is still out on the teacher and his aide, I'll give them time to get their feet wet with the kids, if I don't see progress by back to school night, then my charming but firm side will come out.

I make a very valiant effort to start the school with giving the administration, principal, and special education departments the benefit of the doubt, and try to swallow that they "have our kids best interests at heart".  I'm going to really try this year, I'm going to try to not yell, scream, and freak out when my kid is being marginalized, forgotten, and excluded from things because their classroom is at the back of the school, not encouraging inclusion.  When they leave a kid on a playground that can't talk, I won't let them have it.   When a kid gets out of school that can't talk, I won't call them incompetent.  When a kid goes home with a bruise, scrape, or bite mark and we are told we are not entitled to an incident, or "he fell".  None of this is over dramatic imagination, this stuff happens to special education children, especially non verbal ones, EVERY SINGLE DAY all over the country.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to their common sense and decency, because the reactionary mom is just as bad as a reactionary school I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to Administrators of school districts everywhere.

Please to Special Education Teachers,  and Staff.  

These are our children.  We love them, we worship them, they are tiny humans just like the neurotypical kids.  Please protect them, follow their IEP, work with the parents to make the kid as successful as you can.  Please assume competence and capability.  This is how you do it right.  

How you don't do it right, is lie to parents, deny or withhold services or knowledge of services to a kid that clearly needs them.  Treating our kids like they don't matter and that any hurt that happens isn't an enormous deal.  And Never Never Never tell a parent their child is unteachable.

We know who is doing it right, and we love who is doing it right.  And so do our kids, and we know who isn't doing it right.

Let's do it right together, forget what the Administrators want you to do, they're really just overpaid buffoons, that couldn't walk 5 feet in a teachers shoes.  Kick their rules and their control to the curb, our kids matter too.  You can do it, the parents will stand with you if we know you have our kids backs.  We can do this, we really can - I hope.

Cachi Coffee

I have a 40 mile one way commute to take one of my kids to school, and sometimes because of the heinous Southern California traffic I stick around his school area for awhile, so as to save myself from having a stroke in traffic.

There is a lovely little coffee shop I have found and hang out in La Palma  Cachi Coffee  it makes great coffee, has reasonably priced breakfast and lunch menu, and the food is great and healthy. 

I had chorizo and eggs this morning with a cup of coffee and a side of egg to stay "Keto", and it was $7.00.  Totally doable.  There Wifi is free and fast, the music is awesome, the staff is friendly and helpful.  Lunch Specials are $5.95, and it gets busy at lunch it's a pretty industrial area. 

Every meal or drink I have had here has not disappointed, and it is a place I frequent regularly. 

The location is at 10 Centerpointe Dr., La Palma. 

If you're looking for a place in North County to hang your hat for awhile, meet a girlfriend, just do some self care.  This is the place that gives the stale old chain coffee establishments a kick in the teeth.  This is what a coffee shop should and will always be to me.  Great coffee, good food, and amazing music, with a comfortable atmosphere.  Thanks Cachi! 

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.

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