.Scary...

~"What I do is between me and the Lord, to examine and possibly alter the state of grace in which I live, and thereby the state of grace of anybody who listens." Townes Van Zandt

 We were driving to the Halloween/party store the other night..all six of us squeezed  together in one van. This has slowly been happening less and less.  As the kids get older,(and can stay home alone) this type of adventure becomes rarer..So I was enjoying all of us just being together..the boys and their long legs squished into the back (because that is where they have ALWAYS sat) and the girls in the roomier second row seats. Omar and I up front- listening to them talk to each other..having random bits of conversation..("Does Ebola have something to do with your elbows getting sick?")  mostly they were focused on Halloween..my favorite holiday.."When did Halloween start anyway?"..."I think it was in the year seven.." "That doesn't make sense!  Everyone would have been seven years old!  Seven years old people don't make up holidays..because they don't have anyone taking care of them and feeding them and they were mostly probably eaten." 

I just adore they way my youngest thinks.She has an opinion on EVERYTHING...usually delivered with great disdain..She is so very passionate, so full of ideas..opinions...AND, she saves them all for home as she is not comfortable speaking at school. Which sometimes works against her..

  She came home the other day just beside herself. A group had come to the school to bring disability awareness and sensitivity training. Only...they didn't seem to be very aware or sensitive.  At least not to my girl..I know of this group as they have come to our school every year we have lived in town..I'm not a huge fan. They talk about changing attitudes and bringing respect towards people with disabilities..but how do they do that? By having non disabled people discuss what disability is. That makes no sense. You can not talk about inclusion when you do not include the people you are talking about in the conversation.(reading aloud a story or stories about a disabled person is NOT inclusion) It sends the wrong message. Us and them.  Unfortunately, it was one my daughter heard loud and clear.
   
 Imagine hearing an adult-an advocate-a sensitivity trainer-discussing a part of you..that  very real part that impacts everything that you do,..just imagine hearing this advocate discuss with another child that they hoped that a cure would be found for this part of you,....that your kind of brain didn't grow right..imagine hearing that at eight years old....As my daughter later wrote "It was shocking. I thought it was true.I got teary eyed...it made me feel different..but not in a good way."

  We are so weird about discussing disability. We talk around it..Pretend that there really isn't much of a difference between abled and disabled. Pat ourselves on the back for being so open minded and inclusive.  But really-are we?  Inclusion isn't declaring the "popular "can get a date with anyone" boy or girl"- a hero for asking a disabled kid to the dance, inclusion isn't cheering extra loud when an autistic boy makes a basket in a regular basketball game, inclusion isn't purposely sitting next to a person at lunch because they are disabled. No, these gestures, as well intended as they may be, are isolating.  They are a direct reflection of how disability and disabled people are viewed. Less then, incapable, one size fits all.
No amount of advocacy, or sensitivity training is going to change that until we include the disabled community in the conversation. That is the perspective we should be listening to. 

  My youngest had a bumpy week...luckily it ended on Halloween. My little town does an amazing job of it..closing off streets so kids can trick or treat safely, homeowners going all out with decorations and costumes, local businesses giving away hot drinks and treats..the senior center has a haunted house (and it is scary!)..all of this kind of restores your faith in the world..keeps you hoping that maybe things CAN change...My kids are quickly growing older,,they are moving forward...I need to believe that the world will move along with them..

.Application Perseveration...

~"We have a Bill of Rights.  What we need is a Bill of Responsibilities."~Bill Maher

   

 So...I spent my morning at the Department of Health and Human Services.. Located in a big dark brown(think poop) barn shaped building in our state capitol..it was apparently THE PLACE to be-especially if you are like us-finding out that your kids are uninsured! Yup-my kids at this moment do not have any health insurance. Why is that? Well...because the government believes that  my kids may need to be medically supported by my state. I am serious.  I am not allowed to place my children under our health insurance plan. Well, at least the insurance plan being offered to us with tax credits. Omar's new job does not come with benefits-and in order to keep with the new insurance law-we had to buy our own. We have no problem with this.  In fact, we were kind of excited about it. We had been paying a HUGE amount through COBRA...and we were looking forward to more affordable coverage. Which we got!  Well, at least Omar and myself. My kids? The ones who really need it-  that's a whole other story

  Now, we have always taken care of our kids.  Always. With the exception of getting services through the school system-we have paid for everything. Because we could. ..AND..because we could-we did. Some of my children have disabilities, because of that- we could ask for help from the state..i.e. medical/dental/behavioral, social security, etc. We could but we haven't. Simply because we feel that those programs should be there for people that NEED them and can not afford them.  We didn't need-we didn't ask..we don't want. We thought that we were doing the right thing, the responsible thing.  

  Back in December, when we signed up for insurance (I had been trying since October-logging on and filling out form after form-only to have the website erase it..until I finally wised up and did the application by phone)...the nice people on the government site said  "Your children may qualify for insurance through the state, therefore, you can not place them on yours-The state will contact you about it." (That's even in text-when I log on to my page on the site)...Except January came along and I hadn't heard anything.  So, I went to the nice people on the government website and said

 "The state hasn't contacted me-what do I do? More importantly-what if my kids get sick?"
"We sent your application over to the state-in the meantime, just give the doctor their social security number and it will show that they are covered." "But we don't know if they are covered." "The state will contact you and let you know."
 
  Somehow, call it sixth sense-that just didn't make me feel reassured..so I called the state...and after being on hold for 48 minutes-  Guess what? They have no idea who my kids are-they haven't received anything from the government site AND they said that giving out their social security number wouldn't prove anything-AND if I wanted coverage for my kids, I needed to come in and ..*sigh* fill out an application.

   So, I went back to the friendly people at the government website..and told them what the state said...and AGAIN asked what I should do if my kids gets sick! This time I was told about a free clinic-80 miles away. They also suggested that I go in to the state office and fill out the application to get my children approved. (you know-for the state benefits we haven't asked for) I said "I filled out an application with you!  You said you were sending it to the state because they might qualify-they said they have received-NOTHING! " "Well, we sent it. You should go in and fill out ANOTHER application." "But I just want to put them under our plan!"  "You can't do that-because they may qualify for the state funded plan." "But we don't want state funding!" "Well, you could file an application saying you don't want state aid-but it will take some time to be processed."  "But we don't even know if they qualify! "Then we suggest you go and fill out an application in person with the state."


 HOLY CRAP! Have I entered the Twilight Zone?  Is Rod Serling going to pop out from behind my sofa smoking a cigarette and talking about dimensions of applications and redundancy??!

 I decided to call the insurance "help line"...At that point-what did I have to lose besides my sanity? They said-"Oh the government doesn't really send much of anything to the state-you best go in and fill out the forms in person-you could do it on line...but if you want results-doing it in person will make it go faster."  "But what if one of my kids gets sick now?"  "Well, you could fill out an application with the state asking for your benefits to cover this time." "But we don't even know if they qualify!" "well, you will have to fill out an application to see if they do."

 I have officially and unwillingly landed in redundancy hell.  

  So....we went today- to the poop colored building...with about 100 other people( at the same exact time) and one receptionist....and we stood in a motionless line. I did not want to be there. The other people looked as if they did not want to be there...and the state workers?  They didn't seem to want to be there either..because after forty minutes or so, it was announced by the one receptionist "We only have four staff members here today..so you might want to just go home and fill out an application on line." I ran out the door.

  Omar says that we should go back first thing on Monday morning. Me? Well, I'm thinking that private insurance may just be the way to go.  We might not get tax credit for it, it might cost us a small fortune each month-but my kids health needs will be covered...and really-whats one more application? 

Confessions of a Worrier mother (four years later...) Wright is Wrong..

~"Charity creates a multitude of sins"~Oscar Wilde

 I have been blogging for almost five years. The whole reason that I started blogging was because I simply could not fathom how autism was being portrayed in the main stream media. I remember thinking"This isn't my experience-this isn't the way our life is..there has to be other families like mine!"  Thankfully, I have found many-both on and off line. This is a slightly revised post from 2009. It was my rebuttal to the horrible video "I am Autism" that Autism Speaks had put out. It scares me that four years have passed-and still, the idea that someone can speak so openly and horribly about human beings is considered (by many) acceptable. Four years later-and we need to do better.  There needs to be a lot more listening and a lot less judging in the neuro-diverse community. 

  It started with a blog post on acceptance. Which, as per usual-turned into an argument.  I myself made a few comments. One in particular was in direct rebuttal to something a parent said. They made the comment that 1.5 million people in the U.S. SUFFER from autism-I replied with the simple statement-"my kids don't suffer" In turn I was told that I was one of the "lucky ones"-and then given a detailed description of all of their struggles. I never implied that my children didn't struggle- I simply stated that they didn't suffer. They were right however in one aspect-I am lucky. 

 Three of my four kids are on different parts of the autism spectrum. They work very hard to try and navigate a world that doesn't always make sense to them. Every day poses new challenges. Yet, they face them-because I ASK them to. How staggering is that? Being a mother is a powerful job-definitely not for the faint of heart. I take my position seriously. Oh, I have made many mistakes-which I no doubt will hear about in years to come. But I am learning. I think the most important lesson has been that children become what you tell them they are. All children, no matter what their ability. It is for that reason I talk about acceptance and love instead of laundry lists of symptoms.  My kids have disabilities, they are not broken. They are not empty shells, they don't need to be "recovered". They are right in front of me (most of the time asking for things) I had best make sure my words have substance and meaning. Because those are the words that they will carry with them for the rest of their lives. I am their mother. That is my job, my responsibility, and privilege.

It always astounds me when I am told things like "you are one of the lucky ones" or "your kids aren't really autistic". Astounds me. What I find equally mind blowing is the thought that because I accept my children, accept that three of them have autism-I don't do anything to help them. Nothing could be further from the truth. I just don't have the need to advertise the things that we have done, in such a way as to garner sympathy or admiration for myself. I'm a mother, and I'm just doing my job. It is not about me. It is about my children. Yes, we have worked really really hard, but my kids...they have worked harder. I might do the steering, but the driving is all them. They are incredible human beings-all four of them. I am blessed.

That's not to say I don't have days when I want to run away from home. That however, has nothing to do with autism ..but more to do with the fact that I have four very active kids, three hyper dogs, an overly affectionate cat, a leaky roof, faulty electrical wiring..and a myriad of other things.(sigh) I think that you truly know that you're a mother when a private and secluded bathroom of your own is your secret desire.

I am not a warrior mother. I am more of a worrier mother. I worry about getting my kids the appropriate services, I worry about their education, I worry about their needs being met, I worry about discrimination, I worry about them going out into the world as adults, I worry about films like "I am autism", I worry about the power of people like Suzanne wright and her awful words, I worry that they do not give voice to the people who do have autism...I worry that this will somehow demonize my children-who will always have autism, I don't however worry about "recovering", "curing", or somehow defeating them. I don't worry that my children view themselves as somehow broken and needing to be fixed. I don't worry that they see themselves as somehow less, or as a burden. They know that they are cherished, that they are loved, that they are different-that different can be hard, but it isn't wrong. I recognize that my children, all of them, are human beings. Deserving of the same respect, treatment, inclusion and acceptance as is any other human being. I recognize that it is my responsibility to try and make the world a better more accommodating place for them. I recognize the importance my role as their mother is. I think about all of this and can say with certainty, yes, I am one of the lucky ones.

Wrestling Demons..

~"Well I looked my demons in they eyes laid bare my chest, said "Do your best, destroy me. You see I been to hell and back so many times,I must admit you kind of bore me."~

Ray Lamontagne

   Last month-Oscar participated in his very first Special Olympics..The first because..well,  it wasn't something we had ever thought about. I mean, we are pretty much wrapped up in our day to day lives with each other..It just hadn't really occurred to us to look outside the comfort of the familiar. Or maybe it's that I just never bothered.   So when Oscar came home saying he wanted to go to the Special Olympics...we were kind of surprised- seeing as our boy...well... he is not not an athlete or even slightly athletic...or really ever inclined to move unless it involves a computer mouse or a Wii remote.  "Oscar, you do know that these Olympics are about running and jumping..doing sports-right?" "I want to do it.".."alright...but you know you are going to have to practice every day right." "Yup.".."If you sign up-you can't change your mind..it means that you are making a commitment..you will have people counting on you." "Yes! I want to do it!" "Well o.k. then." Which would have been fine-except, Sam overheard this conversation and decided he wanted to do them as well...How do you tell one son that he isn't quite as "special" as the other? 

  We have always raised our kids equally-regardless of whether or not they were- or where they might be -on the spectrum.  They see each other as equals-they treat each other as equals. Yes-they notice their differences..but they take it in stride. It is just the way it is, and how it has always been.  Oscar stims (a lot) his conversational skills are different...but that doesn't stop Sam from imagining a future where he is an uncle to Oscars kids..or Lily from talking about how they will visit each other at college. It just doesn't occur to them to think any differently..  But lately, I find myself wrestling with why we have raised them this way..is the future they imagine even realistic? Or am I doing a bit of magical thinking..if they believe it -it will happen? 

  Maybe it is both.   It's like the minute you have a child, your mortality(something I had never really thought about) becomes everything. I remember holding each of my babies and thinking "no one in this world will ever love them/take care of them/protect them the way that I do..so I can't die-EVER." I think that having kids with disabilities- ups that anxiety. Like it or not-I am going to have to die one day..and I find myself caught in this never ending cycle of hellish worrying.."Will they be o.k.?" They have been brought up to be strong in who they are, to think that they matter and to believe that they are as equal of possibility as anyone else in the world ..And yet..I worry if that is enough..especially in a world that judges more on what you are not- as opposed to who you are..

  Oscar wants to be a teacher one day.  A fine and noble profession..and-a much better choice than wanting to be a duck-which was his intention for many years.  There are so many people who say "that's great-he would be wonderful"..and equally as many who say "That simply isn't a possibility." and still a few more who have just shaken their heads and said "Oh...dear." Crazy as it sounds-all of them could be right. (with the exception of the ones who said "oh..dear"-people like that don't get to be right.)  Last year, I sat in a meeting discussing long term goals for my boy. Someone said "I  want him to be able to go in to a store-and know how to use money and make change." And I just...stopped for a moment...because It felt like I had jumped into a pool of icy water... I knew that these words were truth..they are realistic... Only I had kept the honesty of them hidden from myself...from the world for so long.  Those words placed my heart publicly on the table-and now everyone could see how it beat.

  So, we went to those Special Olympics-not really knowing what to expect either from the events or from Oscar.  I found myself looking around and feeling so totally overwhelmed...and more than a little bit sad. There were many different kinds of "special" there-and to be totally honest..I wasn't sure if this was the kind of special I want Oscar to be. I know-I'm not supposed to say that out loud.  I know that it is considered a "sin" (by some) to think that way-believe me, I beat myself up enough-I don't need help...But he is my son-one of my greatest joys..and I want the world to be easy for him.  But since it isn't-I will do everything that I can to help him to become the adult that HE WANTS to be.  He may not wind up teaching..but then again-maybe he will. He may not be able to live a fully independent life..but then again he might.  Right now-we just don't know...and I honestly don't like it.

My boy is some ways is an enigma-we just don't know what to expect.  At the Olympics, he did really well. He happily participated in all his events. Although when it came to running...He stood at the starting line..."On your marks...get set....GO!"  Oscar took off...running as fast as he could..running the whole race...running across the finish line...and in true Oscar fashion..he just kept on going...long after the race was finished...Go Oscar!