Tuesday, April 30, 2013

Oops! Autism still exists beyond April. What happened during Autism Awareness Month?

Well, Autism Awareness Month may be over- but our job as Autism parents never ends.  And even though it is the end of Autism Awareness Month, it is certainly not the end of promoting Autism Acceptance. That is something to work on every day of the year.

Beautiful letter written by an autistic child
I usually do a post a day on Facebook about Autism. This year, between my school, Teenzilla's many endeavors and constant back and forth with The Boy's school- I did not meet that goal. Believe me, it is all about Autism awareness in my house- as it is in ANY autism household. And while a part of me felt like I missed a lot of opportunities, I know that I ceaselessly promote autism awareness and ACCEPTANCE on a daily basis. So I missed some status updates- the world goes on.

I just want everyone to understand and know, that while awareness is necessary, ACCEPTANCE is vital. And  just because the month of April is over doesn't mean the efforts to continue spreading awareness should stop.  “Autism Acceptance”  needs to be applied to every other month of the year. More than that, I want everyone out there to continue spreading just plain old ACCEPTANCE. As we move beyond this month let us all embrace what comes after awareness; acceptance, inclusion, respect and full lives for all of us regardless of our abilities or disabilities. 

Just because someone is "different" doesn't mean they don’t need and deserve to be accepted with open arms by members of their community. We all look, act, learn and behave differently but we should all be treated equally and be afforded the same opportunities

I think May should be dubbed "National Inclusion Month". Inclusion is such important concept when talking about acceptance because true inclusion involves interacting with, communicating with, teaching,  and accepting people. Not just because they’re different but because they’re the same.   Did that just blow your mind? We are all human.  There is no sane reason to exclude individuals with differences or their families. Don't we all deserve the same respect and to be included, despite any "differences"?

What I really, really want EVERYONE to remember  is just because the calendar changes to May- doesn't mean that all persons with autism disappear for another year. Nope. Kids and adults alike with varying forms of autism are still working, living, learning, loving  and existing EVERY SINGLE DAY OF THE YEAR!  

It  is great to have an entire month dedicated to the cause,  but autism will continue to affect the lives of families all year round.My challenge to you is to continue to advocate for awareness,education and ACCEPTANCE  of  ASD. The need for answers does not begin and end with the month of April.

So stay strong, keep advocating, and dammit- get a minute for yourself if you can Autie/Aspie parents  caregivers and teachers! We need a little downtime on occasion too. 

Don't forget, I am doing a giveaway on my Facebook page Red Vines and Red Wine- a GREAT book- How to talk to an Autistic Kid, written BY and autistic kid!!  It is wonderful and awesome and I can't wait to find out who the winner is! 

Saturday, April 27, 2013

You got me WHAT for Mother's Day??

OK- it's another in a long list of blogs by seemingly ungrateful mom's saying what they DON'T want for Mother's Day.  I full embrace my ungrateful, whiny, bitchy side when it comes to this day. For years, I was the smile and say how much I loved the homemade gifts and home burnt, I mean, cooked breakfasts,mom. Then my spawn got older, and the gifts didn't get any better. No thought, no pizzazz, and homemade Chore Coupons are a bunch of bullshit- because as soon as you try to redeem them the kids are nowhere to be found.

I am my family's EVERYTHING- as most mom's are. I am the cook, maid, chauffeur, doctor, lawyer, teacher, warden, confidant, laundress, go to every meeting, school function and know where EVERYTHING is at ALL times, super woman 24/7. Mother's Day is every damn day a far as I am concerned. But do I ask for anything? Nope. And most likely, I will end up doing something for someone else, or giving up something I wanted to do just to keep the peace. (Or spare the credit card- I have serious issues spending money on myself).

I like quiet. No video games or sports (unless I choose one of them) playing on the TV. No laundry or cleaning. No fighting among kids. Maybe take me out to breakfast or brunch. Or let me stay in bed all day if I choose with NO INTERRUPTIONS. Make me a mimosa. Or three. A day trip to the spa- now you're talking.   But I most definitely do not want:

1)A burnt, partially cold breakfast in bed. First you woke me up. Second, you made a huge mess. Third- I don't like eating in bed. The flower/weed from the yard does not pretty up this disaster. So thanks, but no thanks.

2) Asking me the day before what I want. If you haven't at least THOUGHT about Mother's Day prior to the day before- just forget it. 

3) Anything that implies household chores. Vacuums, pots and pans, a 50's style apron. Nope, nope and nope.  Save that shit for birthday and Christmas. 

4) Jewelry. Yeah- you heard me. I wear my wedding ring, occasionally earrings if I can find a matched pair. But I don't need or want anything else. Now- get my wedding ring cleaned- that would be appreciated. 

5)Gift Cards. Really? I mean, I love giving these easy, no muss no fuss gifts- to teenagers and distant relatives. But not on Mother's Day. To me. No thanks.

6)Clothes. I am super picky about what I wear- and I am overweight, so odds are that unless it is a scarf or a pair of socks,(which I don't want either) it will be the wrong size and I will have my feelings hurt or be pissed. It doesn't work out for The Mister, or the kiddos- don't do it.

7) An afternoon with the in  laws. I love them- but I really don';t want to spend my afternoon being worried what The Boy is doing, or having to stare at a sulky Teenzilla. Honey- YOU take the kids and go hang out with YOUR mom! That would be awesome! 

8) NOTHING with "Best Mom Ever" or anything similar on it. 

9) Nothing handmade from the kids. The two who are at home are almost 15 and 11. The oldest is 22. GO TOGETHER AND BUY YOUR MOM SOMETHING DAMMIT! 

I am simple- I would enjoy a day of chillin' with the kids, taking random naps, NOT doing laundry or cleaning up after anyone, having full control of the TV and sipping mimosa's. If The Twenty Something has to work, take me out for dinner at Chile's and give me some of those awesome margarita's like you did last year- you know, the ones that had me laughing too loud and damn near dancing on the table? That was great!

Just be extra nice to me, ok? Don't ask what needs to be done- just do it. Don't make snippy remarks to antagonize someone, be sarcastic with The Boy who doesn't get it anyway, ask me where ANYTHING is (unless it is my empty wine glass- I will be happy to point you in that direction) and don't begrudge me MY day.  I love you all, and am grateful to have such a beautiful,wonderful family. Me getting a day "off" won't change any of that.  And please- don't forget- this is my 11th Mother's Day without my own mom. I miss her every day. This day is one of the hardest. I might be kind of weepy. Don't ask questions, and don't make a big deal of it if I burst into tears and run upstairs. It will pass. Just have another glass of wine waiting when I return- and everything will be just fine.

Tuesday, April 9, 2013

Autism awareness, and teaching your kids tolerance

Today The Boy went for a bike ride to the local park that is a block from our house. This is something he does quite frequently, AND quite frequently comes home with a story of how he met someone, and made a new friend. The best part of that- they usually know me and that just blows The Boy's mind!

So anyway- today he went to the park. There was a group of kids there- he said he couldn't remember their names, but he has seen them at school. He decided to introduce himself, (and I am sure he did it in his grand fashion of a sweeping bow, followed by his entire name, age and grade in school) and wanted to hang out. This is difficult for people on the spectrum. Interpreting social cues, knowing how to approach people- these things are a lot more difficult for the kiddo on the spectrum. It doesn't come easy, or natural.  The group of kids apparently laughed at him, and started teasing him.

It was about this time, that The Boy realized it was time to leave, so he  started to ride his bike away, and this group of kids chased him, calling him names and telling him they knew where he lived. The Boysaid he rode as fast as he could to get home- but "They were just joking around with me mom". That is the  saddest part  to me,The Boy really thought they were just joking around with him. This was a teachable moment, a time to explain to him that not everyone is nice or worthy of being a friend. His look of confusion breaks my heart, and makes me want to shelter him from a cruel and intolerable world that will always look at him as deficient, not worthy, and "weird".

I was mad, I was hurt for him, I was ANGRY! What is wrong with parents that don't teach kids to be tolerant or even kind? And I know- parents can't be responsible for everything their kids do when out of their sight- but  if they are TAUGHT AT HOME, they generally act the way they have been taught in public, with or without their parents.

And the way The Boy explained it, there were 4 of them, and a kind of "pack mentality" seems to have set in- and they singled out my son, by himself, as weak, and easy to bully. Yeah-- kids at this age are jerks- but they have obviously not been taught how to act, or treat others. And if just ONE of them was taught that this was wrong, that one  could have stopped it. They might be young, but they are not stupid. Teenzilla was sticking up for the "underdog" as young as six years old! It's not unheard of.

I am not writing this for the other parents of children with special needs who have seen their children bullied, or excluded, or have their feelings hurt because of similar behavior  This is directed at those OTHER parents. The ones who seem to have forgotten that their job is to teach their children about diversity, tolerance and problem solving skills. And how bullying is NOT ok... ever.

It's already hard enough with The Boy being socially segregated at school- put in a categorical classroom that is not made to seem like a part of the school community at times and social isolation and harassment can go hand in hand. Without meaningful interaction with students with disabilities, other students are more likely to make hurtful remarks based on stereotypes. THIS is where parents come in. TEACH YOUR KIDS!  If you want your child to grow up being not only tolerant but inclusive then you need to expect that from the very beginning. Don’t expect them to learn these values as adults if you haven’t encouraged it of them as children. And don't expect it to be taught in school- because the school's that do embrace the full meaning of inclusion are few.

So parents- let me give some helpful advice in how to teach your kids to NOT be jerks- and maybe some of you out there can take this advice as well.

Teach the golden rule; Treat others the way you would want to be treated!!!

Model tolerant, accepting behavior. Kids learn what they live- THAT is a fact.

Don’t label! Referring to other kids as "that one with autism" or "that girl who wears hearing aids" only points out differences, issues that may not even concern your child, but will become the focus now that you have pointed it out. This is just as important as if you are talking about ANYONE, whether directly to your child or not. See above statement!

 Encourage questions, and if you don't have an answer- talk to someone who KNOWS. Talk to a parent of a kiddo with special needs, particularly autism, because it's invisible- and not something that can be seen. ASK ME!! I will tell you whatever you would like to know, and I will help you talk to your kids.

April is Autism Awareness Month. It is also Autism Action Month.  Check out these websites for some great information, and ways you can become more aware, and therefore more tolerant- which enables you to help teach your kids how to be more tolerant, kind and compassionate. We really need more of that in the world, don't you think? 

Tuesday, April 2, 2013

Autism Numbers - 1 in 68. Who is celebrating?

April is Autism Awareness Month. I hear so many people asking how others are going to "celebrate". There is no "celebration", unless it is celebrating the accomplishments our kids make. Or celebrating the parents and the family members who make countless sacrifices every day. No, Autism is NOT cause to celebrate.   What it is, is a cause  for panic- why are the numbers climbing? Why is NOTHING being done about it?  Why are so many useless "studies" being done? It's all about maternal age. No wait, it's all about paternal age. Oh no, it's about how close you live to a freeway. GAHHHH!!!

I  use platforms such as my blog, my Facebook page and my big fat mouth to push autism awareness, action and acceptance. I will shout it from the rooftops. I want to make people aware of the EPIDEMIC that is Autism. I don't celebrate it. I don't know many who do. I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 68 children that are diagnosed with this disorder.We should honor and celebrate those that  live with autism and face and overcome more challenges than a lot of people could ever imagine.  

Then you have Autism Speaks- the first organization it seems that comes to mind when talking about Autism. It is  easily one of the biggest and loudest voices talking about autism.  Some questions I wish more people would ask about  Autism Speaks- aside from why they mismanage the money gained off of hopeful families walking in circles- where are the Autistic people on their board? Why do only 4% of the funds raised actually go to the families that need them? WHERE DOES THE MONEY GO?? 

And to bring up the MOST controversial of topics- the fact that AS has said repeatedly that vaccines and autism cannot possibly have any link to one another, but, in 2009  Dr. Geraldine Dawson says almost the exact opposite. "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain." and  "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."  Oh- and when I went to look at this interview with her- I got an error message on the AS website ACCESS DENIED. Hmmm... interesting

So if you want to know why I no longer support  AS,  follow the link- you will see one BIG reason why. Autism Speaks Financials shows salaries of upward to $400,000 dollars! SALARIES! Add to that a very large lobbying budget, and the fact that  44% of Autism Speaks’ budget may go  toward research, but only a small percentage of these funds go towards research into improving the quality of life of autistic people.  Hell- I want a CAUSE or CAUSES pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth- but the simple truth is there are already way too many children and adults already diagnosed- who are struggling NOW.  I would love to know how many of these families and individuals have actually received the Autism Speaks Family Grant, and how much they received.  

I know many say that Autism Speaks advocating for a "cure" is discounting anyone with autism, and portraying them as  burdens.  I can understand that. And  I am not an advocate for a "cure" necessarily. But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad? 

 All of that said- I do not begrudge anyone their opinions or beliefs.  I will not be rude,  or mocking of anyone who believes in AS. I once did too. And my opinion is not everyone's. Just like my "Educate before you vaccinate" stance- I encourage people to look into local charities for Autism, or The National Autism Association as well, before throwing all of their money at Autism Speaks.  Do your own research- and make decisions based on what YOU feel is best for you. I did.

In  the meantime- I will be an awareness junkie. I will read, research, talk, and write for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else. This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you might  learn a thing or two from me. 

This is not a month to celebrate. This is a month to learn, and to teach. Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand. We need to tell our stories so that people  will begin to understand and accept our loved ones for who they are, what they are capable of doing, and not what is “wrong with them.”   They are human beings living here with us. They are smart, funny, capable, loving and not going away.