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.