Tuesday, April 7, 2015

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.

Monday, April 6, 2015

The Day My Filter Died

I have had these thoughts wrapped in my head for weeks now, and kept them in because it's a reality that to be a blogger, you have to write about rainbows, puppies, and the perfect afternoon outing with your perfectly coiffed and dressed children, your perfectly designed home, and cooked meal and never ever show the mess in the kitchen ;)

Well you know what? that just isn't real.  I can't fake it anymore.  I love my kids and I love my life, and sometimes our "perfect" outing or vacation is hijacked by autism or some other co-morbid diagnosis that goes along with it.  My kids are rarely tolerated by public places,  my genius kindergartner was kicked out of Kumon because he was reading and scripting the instructions to the teacher repeatedly, and she would not tolerate a non-stepford child.  Even though he could have worked circles around the "neuro-typical" kids in there, the quirks of autism were more than was going to be accepted in Kumon, so we left, and I accepted that woman telling me "he needs therapy before he can come here", "we can't be expected to tolerate his behavior".  Well honey, thanks for telling me something I don't know - no I didn't say that to her, I just took the bullet she shot at me and let it stew for awhile.  Well no more of that.  My kids are amazing, and sometimes  HERE IS WHAT I AM NEVER SUPPOSED TO SAY OUT LOUD.  Sometimes the Neuro Typical kids in the world are a little over-rated, spoiled and nightmarish, but yeah, my kid reading the instructions over and over and needing 10 minutes to adjust to a new environment, yeah, that's the real problem. 

You know what else I'm going to be real about, my fitness journey.  Yes, I lost 80 lbs, yes, I gained 30 back, yes I'm trying to get them back off.   It's hard, it's frigging really really hard, but being fat is miserable, so I push through the hard, and sometimes I fail, and sometimes I stay in bed and not workout, and sometimes I run really really slow.  I disappoint myself, and I shock myself too, with what I'm able to do.  I eat ice cream in the middle of the night out of the container in the garage.  So there, it's out there, it's real, stand up if this is you too.  I will still be running 2 half marathons barely trained for next month, praying I don't die or injure myself too much.

As an autism mom I always feel like I fall horribly short.  I am inconsistent sometimes, I give up too soon on a therapy or a treatment, my follow through sometimes falls short because I frankly am exhausted, physically mentally,  and spiritually.  I do the best I can, and sometimes I feel like in all areas my life that others do it better.  So sometimes I hit it out of the park, and sometimes I strike out, I just need to find the balance.

As a school parent, I fall short, because I'm the "special ed" mom, and the school barely notices our kids.  But I'll tell you where I won't fail your kids, is voicing the truth where their safety and well being our concerned.  While PTA meetings sit mostly empty and most moms expect those moms to do it, you're missing out on having a voice for your kids education. While many were busy making a perfectly orchestrated family photo at Corona Del Mar, the government snuck in something called Common Core, that is untested, unproven, and lower standards than we've ever had.  If you're busy trying to show the world your perfection.  Common Core is invading your perfect kid and going to make him or her a drone that is not university ready.  And while I appreciate the perfect image all over Instagram, show up at a board of education meeting or school board or PTA meeting occasionally so you can see what the intentions are for your kid, and speak up if you don't agree, this Common Core is basically going to ruin a generation.  For a special ed mom that's horrible and something I can't stand for.  My kids can do everything, they are different, they are not less, they aren't the same as a typical child, and need accommodations for that and Common Core is going to take it away, well I have a voice, I am their voice and I will scream this until you all pay attention.

So I apologize if the new "real" isn't the lifestyle of OC you want to see.  I'm just not that perfect picture, I have flaws, and I work them out.  You probably won't see my family on the PR promotions of families at amusement parks, or restaurants, or cool family shows.  We are a real family, and not the picture of perfection that sells the tickets to the places people go.  But if you want to show how to navigate OC with special needs, and quirks and how to manage them with a kid or kids with special needs, I'm your girl.