Wednesday, December 6, 2017

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. 

Thursday, September 28, 2017

Sunday Vibes at the Gospel Brunch

I believe I have already raved about what an amazing venue for live music and restaurant the the House of Blues in Anaheim are.  We are always looking for new things to try to shake up "date night".  So instead of a night, we tried the World Famous Gospel Brunch on Sunday Morning.  It has been a thing I've wanted to do since I was a single girl in my 20's, and I can not wait to go again, now that I have experienced it.

 The World Famous Gospel Brunch is a great family friendly event to share with all ages.  Sunday is not a day of rest at House of Blues.  We enjoyed the music that moved our soul, and the delicious food that fed our hunger.  The music got the audience out of it's chairs and dancing and singing and feeling fantastic.

The venue is great so you're not crowded but you are cozy with your neighbors and enjoying the company while enjoying your buffet brunch and waiting for the performance to begin.  The World Famous Gospel Brunch is the perfect place and event to take out of town guests, a girls "night" or morning out, celebrating a birthday or special occasion, or just a regular old date like my husband and I had.  There were lots of children in the audience having a great time.  It really is a family thing that all ages will enjoy.  I couldn't recommend it more, and DO NOT MISS THE BOURBON BREAD PUDDING. - TO DIE FOR.  So was the brisket, the biscuits and gravy, the waffles, the collard greens, everything was savory, hearty, delicious.

The House of Blues is located at the Garden Walk in Anaheim tickets are available online.

Tuesday, July 11, 2017

Shallow Stick Figures with No Souls - AKA Real Housewives of Orange County

So last week when I was home with a little one, I turned on Bravo to see if I could lose some brain cells.  There was a few days of Real Housewives of Orange County Marathon.   If you ever need to feel morally, spiritually, and ethically superior - this show does wonders for my self esteem.  Hopefully Season 12 won't be a snoozer, but we have a good mix of bi-polar, alcoholic, narcissism, self absorption, crass and tacky with a side of false eyelashes and too much makeup to make for a good watch.

I wish they would change the name of the show to Drunken Chicks without Psych Meds.  There isn't anything real about them, they're not housewives, and there is nothing ladylike or anything that speaks for us REAL moms and wives in Orange County.  So I'm going to keep it about the comic relief because it's a train wreck that for a decade I haven't been able to not watch. I love it, it's my thing and yes slightly pathetic.  But seriously my life is hard and I need some mindless banter sometimes and they provide the perfect recipe for mindless........

Vicki for the love of God.  You have not in 12 seasons been nice to anyone that has walked on "your show".  So for you to demand that people be nice to you, I couldn't stop laughing.  You and the angry drunk Kelly Dodd sat in your office mocking an empty parking lot, yeah that's nice, and productive "go to work", as you say.  You are the neediest most narcissistic broad ever and it just gets worse every year.  I have watched you make your daughters surgery and illness about you, I have watched you blame everyone for your affairs, I have watched you blame everyone and try to play the victim in every way possible. Also, you're not Jesus being nailed to the cross,  I have laughed at that one for 2 years.    I have mocked you for begging people for compliments, and trying to convince your adult children that you were Low-Maintenance - even they see through your shallow self.  But I have to keep watching so that I can spot the signs of narcissism and pray that I or anyone near me is never as self absorbed as you.   You met with Lydia, and had to rip her personality apart before you complimented her?  What's with that?  You're the kind of women that women want to smack in the head.   And one question, since you all left Ryan in Oklahoma that place you hate and the people in it, did you bury him there after he went bat shit crazy because someone put her feet up on the couch?

Oh Tamra, it's good that you found the Lord and your faith.  It does take life changing hurts to usually bring people to God for life changing experience.  So why if you have gone to all this work with your faith do you surround yourself with these evil nut jobs????  Oh that's right because you're the shit stirrer and look for shit to throw in the pot to keep the focus off of the life you're trying to avoid.  You
have become a much more rounded softer person over the years, but for crying out loud, you're just a fine line of Vicki narcissism away from demise.  It's clear you chose the fame of Bravo over your kids.  Own that, and admit it, everyone knows that you made that choice but you.

Shannon, oh Shannon.  You're a shit show of mental illness.   Can you just pretend to be grateful for the amazing life you have?  Let Vicki go.  Vicki didn't make you gain weight she hardly shoved the bread and Grey Goose down your throat.  So lose the weight, we've all been there, and quit whining about it.  Your sadness and hurt, and anger will do nothing good for anyone.  There is no feng shui that will remove your hurt.   Forgive and move on.

Lydia, you're sweet.  I just like you as a mom, a person, you're fun.  These ladies are mean, and OMG arms distance.

Meghan - Congratulations on that baby. Can't wait to see how you jump into drama that has nothing to do with you.  You're young,   you're not a middle aged desperate for attention OC wife yet.  Don't do what those crack pots do.

Kelly - Whoa, still nuts, still annoying, still angry, still useless.  Tamra is the shit stirrer, you're the ingredient in the pot that brings the stink.  Man I can't figure you out except maybe bi-polar alcoholic.  Holy crap you are the train wreck that keeps on giving.  So I can't wait to see what you bring.

Diamond Sports Car Lady - OY Vey, we will see what you bring, but I saw you filming in Laguna not long ago, and you're high maintenance and a little bit full of yourself - seriously.

Friday, June 9, 2017

All - New Fight Night for DATE NIGHT Series - Rumble on The Water Debut

I am always looking for something new and fun to do for our date nights, or date days.  I mean I love Orange County and everything about it, but sometimes going out of the comfort zone and doing something new and exciting could be the best part of date night.

My husband is a huge fan of Mixed Martial Arts and I thought trying it out live would be fun.  So as a new venue is rolled out, we are going to do the series of Fight Nights this summer. So hopefully we will see you tomorrow night!

The Queen Mary introduces a knock-out win with the first-ever Rumble on the Water, a local, one-of-a-kind Mixed Martial Arts event hosted at the Queen Mary. 

Rumble on the Water brings stellar fights and talented up-and-coming fighters to Long Beach for a completely new, exciting, and action packed event. Attendees will have the opportunity to watch the fights up close and enjoy great food, tantalizing drinks, a VIP lounge and cigar lounge. 

The fight night series is located just steps away from the water, offering spectacular panoramic views of the legendary Queen Mary. In conjunction with Roy Englebrecht Promotions, Rumble on the Water will take place with Southern California’s top MMA athletes competing on June 10July 22, and September 16 at 7 p.m.

The Venue is breathtaking, located in the Port of Long Beach, the Queen Mary features a rich maritime history, authentic Art Deco d├ęcor, and stunning views of the Pacific Ocean and Long Beach city skyline. At the time of her maiden voyage in May of 1936, she was considered the grandest ocean liner ever built. The Queen Mary’s signature restaurants include Chelsea Chowder House, Observatory Bar, as well as, a weekly Champagne Sunday Brunch served in the ship’s Grand Salon. History buffs enjoy the ship’s museum with various daily tours, and currently the ship is featuring the renowned Diana: Legacy of a Princess exhibit. The Queen Mary features 80,000 square feet of event space in 17 remarkable Art Deco salons as well as a tri-level, 45,000-square- foot Exhibit Hall. The Queen Mary boasts 346 staterooms including nine full suites. For more information or for reservations, see or call (800) 437-2934. The Queen Mary is located at 1126 Queens Highway in Long Beach.

Monday, May 29, 2017

House of Blues Anaheim - Music and Food to feed my Soul

I have always thought of music venues as great places to go and have "bar food", maybe, if you're lucky.  

The new House of Blues Anaheim has changed all of that.  Their dining room and restaurant have raised the bar very high for any restaurant.  Not only is the music venue top notch and an absolute thrill to go to with the high caliber of performers on the calendar.  The menu is a match for high caliber food and absolutely wonderful eclectic southern menu.

A Bar-B-Que menu has just been released and I was hosted and invited to try the new menu items.  If you are a fan of Bar-B-Que, the twist that HOB and Chef Kelvin Crisostomo has come up is extraordinary a southern flair and some fantastic twist to traditional bbq, you will be thrilled.  For example my favorite twist was the Kimchi cole slaw that was served with the pulled pork sandwich.

  • Korean BBQ Riblets: Marinated pork riblets, slow cooked, kimchi (currently available on the Foundation Room Menu)
  • Pulled Pork Sandwich: Slow-smoked pulled pork, BBQ sauce, coleslaw (currently available on the HOB Anaheim Restaurant Menu)
  • Smokehouse St. Louis Ribs: Dry-rubbed, smoked and covered with BBQ Sauce and served with BBQ baked beans and coleslaw *gluten free  (currently available on the HOB Anaheim Restaurant Menu)
  • Bourbon Bread Pudding (currently available on the HOB Anaheim Restaurant Menu

Everything was superb, and don't get me started on the dessert (Bourbon Bread Pudding with Caramel sauce).  I may or may not have tried 2 Bourbon Bread Puddings.

If you're going to a performance at HOB Anaheim, you don't have to go anywhere else, the food, libations, desserts and talent are all just amazing and House of Blues is now an official destination.  

The House of Blues is now located in the Gardenwalk of Anaheim on Katella.  Their website has all information and calendar of events for you to peruse.  This is the night out that is perfect, it has everything you could look for.  Great food,  a very magical atmosphere, and wonderful talent and performances.

 I can say I am a fan of all of their food, my next venture there will be the Gospel Brunch.  

I can't wait to try the food and listen to some amazing Gospel music, feed my soul in every way!

Tuesday, January 10, 2017

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.

Tuesday, January 3, 2017

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.