Don't Forget YOU

Autism has a (not so) funny way of taking over your life, your home, your time, your wallet, your family, and even your sleep.

We use everything to take care of our children with special needs, and whatever left over is given to our other family members. Its a balancing act on a high wire while juggling flaming, super sharp swords - worthy of a side show in the circus but its not easy and its certainly not healthy.

Guilt is a common feeling. "Was it something I did or didn't do" is followed by "am I doing the right thing, am I doing enough, am I doing something wrong?" and closely on the heals of that guilt trip is "Am I doing enough for the rest of my family?"  These are normal, natural feelings we all have - even when we don't have children with special needs. Everyone wonders, questions, and doubts themselves. Its ok to question, but its not ok to let those questions and feelings take over your life. You can only do the best you can, hope and pray for the best, and love.  Love your family, love your life, and most importantly, love yourself.

So I ask-
What about YOU? What are you doing for yourself?

We often put ourselves last, ignoring our own needs and desires in our race to take care of everyone and everything else. This is the worst thing we can do.  Burn out is real and its dangerous. We can't be the parent and caregiver, spouse, friend, or family we want to be if we burn out all the time.

So don't forget about YOU.
Even if its 5 minutes, remember YOU. The person you used to be. The person you want to be. The person deep inside, screaming to come out. Give yourself at least 5 minutes a day to be you, to celebrate you. Take a walk, take a bubble bath, treat yourself to some good chocolate, blast your favorite music and dance, make yourself a fancy lunch with your favorite foods even if no one else will eat it, go to the gym, get a manicure... just do something for yourself and only yourself. Its not selfish. Its selfless.  We give so much of ourselves to our family but we forget to give to ourself.

So starting today, give. Give to YOU. 5 minutes or 50, do it. You'll be a better you for it and everyone around you will benefit.  And they'll be happy you did it too because they love you and probably wish you did more for yourself.

Be you. Love you. Care for you. You deserve it!

TGIF

Shhh, don't tell anyone but the best part of my TGIF is that I get to work this weekend.

I stay home all week to take care of my family and home.  Current needs and logistics just don't mesh with my working on weekdays right now so I'm limited to weekends.  Thankfully, as a nurse, I have very flexible options so I'm able to work every other weekend (or something like that depending on what is going on in the kiddo's lives).

When people ask me why I work, the answer is easy.  For me.  Yes, the extra money is nice but work is my sanity.  I love what I do and I need to do it.  And by feeding that part of me, I'm a better mom, wife, and person.  Too many times during the week, I feel lost because I don't know whats going on with my son or how to best help him.  I feel lost because I'm overwhelmed by life.  My career centers me and reminds me of who I am, it helps me feel in control and useful - feelings that are sometimes lost at home.

For those 12 hours each day, autism doesn't rule my world. Its there, always in the back of my mind and in my heart, but its not front and center, in my face, all day.  I can breathe.  I don't have to worry about moving wrong, saying something wrong, or doing something that will set off a meltdown.  And then, after a long but fulfilling day, I can come home to the best hug and kiss a mom could ask for.

So TGIF.

1 in 68.

Wow

I expected the frequency to increase but still, seeing it in print takes my breath away.  And the numbers are old!  What is the prevalence with children who are 4 last year?  How many have been diagnosed this year alone?

Does it matter? We know too many people are living with autism spectrum disorders.  It is not the autism that is the problem.  The problem is our world.  A world that is still too inflexible, too segregated,  too un-accepting, too uneducated, and too un-accommodating.

We need to change, just like the CDC's numbers changed today. We need to embrace our children and adults with autism and change the world so they can access it. We need to educate our neighbors and our communities about people with autism and learn how to educate our people with autism.

Our people with autism, the very young and the old, can thrive in our communities if we let them. They can and will live meaningful, happy, and beautiful lives with our help.

So lets change. Lets change the world - for our children, young and old, with autism. They deserve it. They need it. And together we can do it.

TV

I remember when M was younger and all of his favorite shows were cartoons.
Now its How I Met Your Mother and Big Bang Theory... I almost miss the simple, easy days of cartoon watching!  Both shows have led to many interesting and thoughtful conversations though so at the end of the day, they've helped M grow and thats always a good thing.

How I Met Your Mother has allowed him to ask me questions about adult topics - questions that may be uncomfortable to answer but better the explanations come from me then kids at school.  I'm always worried that he's going to blurt something inappropriate out at school to the wrong people so I try to take advantage every opportunity for conversations about adult topics, slang, etc. Barney has opened up those opportunities multiple times and its better then Two and a Half Men, which he was obsessed with for awhile!

And Big Bang?  I love that show!  We use Sheldon's quirks and idiosyncrasies as comparisons all the time when we are watching together.  Its an easy, fun way to point out that the funny but annoying thing Sheldon is doing is something M sometimes does too.  And I love that show too so its great time for M and I to hang out and enjoy something together. BAZINGA!

The Regular Show

M loves "The Regular Show" - a cartoon about a blue jay and a racoon who work at a park.  I don't get it and I doubt I ever will but M loves it. What I've noticed and like is that I can use the show as a great examples of behaviors and emotional reactions with M.  Its opened up some good conversations and led to some great social skill practice because its more fun and interesting to  talk about the characters and episodes and M doesn't even realize what we're doing.

We are being hit with a wintery weather mix of sleet, freezing rain, snow and other cold, wet precipitation.  School is closed which wouldn't be so bad if we didn't have yesterday off for MLK day.  We've done all of our homework, we've read and we've watched everything on the dvr box already. Pulling out cards or a board game soon but I've got to psyche myself up for prepping M in case he loses.  Losing games is a huge weakness for him.  I'm fairly sure either Rigby or Mordecai hates to lose too so hopefully I can use that to head off a meltdown.

Labels

A few months ago, I heard one of our district administrators say that he wishes labels did not exist in education. He is a strong proponent of delivering interventions and modifications based on the student, not the label.  I had never given it much thought but now I agree with him - student 'needs based' education makes much more sense to me and all children would benefit if done universally and well.

Not everyone agrees.  Like the arguments and infighting about vaccines, how to educate our children brings out the debate club persona  in all of us. 

I live in a district that is fully integrated via a great inclusion model.  Its truly provides individualization for each child.  M spent most of his time in class with his peers with many of his services and interventions completed as "push ins" rather then "pull outs".  It works for him.  I know other children on the spectrum that need more pull out services and time away from the class - they have plans that work for them. 

Meanwhile, I have a friend that spent years fighting the district to get her son labeled autistic.  He was receiving services all along and none of the services changed when he was finally labeled.  She thinks labels should define how we educate our children.  She doesn't understand why I say M has pdd-nos and thinks its a cop out, that I should be fighting the district to label him with something more specific (his IEP says autism but his official dx from specialists is pdd-nos).  
She wants autism classrooms and programs because she strongly believes students with autism would be better educated in a specific separate program.  I have agreed to disagree and now bite my tongue when the subject comes up.  I don't think our children can be shoehorned into a one size fits all autism classroom - they are too unique and their needs are too widespread for it to work here.  Maybe in a bigger district it could work but for now, I'll stick with individualization, staff education about disabilities and better programming within an inclusion model.  Our children aren't  going to be segregated in life and I refuse to segregate him now if he can function in the regular environment.


I hate the fighting and disagreement within the community - whether its about vaccines, labels, education models, interventions... lets stop fighting each other and focus on fighting together to make the world a better place for our children.

out of the mouths of babes....

I guess my daughter spends too much time with her brother and thinks she can just blurt anything out too.
We were having lunch at Chipotles before I dropped her off at a friends house.  She points at my burrito and says "I'm glad I'm not going to be home to experience that later....toot".  Thanks kid.  Just because your brother has poor social skills does not mean you get to reference burrito toots in a crowded restaurant :-)