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Autism Speaks does not speak for my son.

Autism Speaks is calling for a “national plan” in a piece written by Suzanne Wright on the organization’s home page. I’ve been disillusioned with Autism Speaks for some time now, mostly because they spent so much time and money peddling their wish for a cure.  The “cure” narrative bothers me. It treats my son’s neurology as a disease, not the way he was born. I’m all for any advances that will help him function better in his daily life- it’s why we have given him speech and occupational therapy since he was 14 months old. It’s why we get him extra help during the school day so that he can accomplish his goals. But we do things his way. We seek to understand him and let him work through academics using his unique and wonderful neurology. A cure seeks to change who he is- and we LOVE who he is.

In her article, Mrs. Wright went much further than the whole cure issue. She dehumanized my child and my friends who have autism. She begins the article talking about what the nation would do if we woke in the morning to find that 3 million of our nation’s children went missing. How we’d all freak the hell out and look for them. Then she said that’s exactly what is going on for our children. They’re missing. And we’re not doing anything about it.

Ahem? My son is not missing.

She goes on to talk about how hard the lives are of families with children with autism by saying, “These families are not living. They are existing. ” We’re zombies? Sure, there are days where I don’t get sleep and I feel like a zombie, but that doesn’t mean my life is devoid of beauty, joy, laughter and LIFE.  We aren’t existing. We are living a life less ordinary. Hard? Sure. But we get to experience a range of emotions that I would not trade for anything. I’ve felt sorrow beyond any I’ve known and in contrast, I’ve felt joy that I will never be writer enough to put into words. I’m REALLY living.

Autism Speaks Does Not Speak For Me Or My Son

She goes on, “This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.”

At this point, I’m really struggling to not use bad words. This picture she paints is NOT AT ALL autism. How dare she? It’s not a life full of despair and fear.You’d think she’d know a thing or two about autism by being the co-founder of Autism Speaks.  This takes me to the other reason I’ve become disillusioned with Autism Speaks: They speak for people with autism rather than letting autistic people speak for themselves. The infantize autism in almost everything they do. The whole piece was about children. About how hard it is having a child with autism, how costly, and how we’re not ready for a future of 3 million autistic people who can’t care for themselves (which completely discounts the fact that a great many people with autism are completely self sufficient.)   The piece says nothing of how it feels to be a person with autism in a world that is not accepting. In a nation where the co-founder of Autism Speaks itself writes something so completely awful about people with autism.

At the end of her article, she talks about the message we’re sending to our kids. If I could ask Mrs. Wright anything it would be this, “What message do you think my son would read in your words? How would it make him feel as an autistic individual? What message are you sending to children with autism?”

The whole article was about how autism is ruining lives, tearing families apart and costing the nation too much money. It talks about everything having to do with autism besides the autistic person themselves. It does not seek for understanding and acceptance of people with autism and it does not say a damn thing about helping adults on the spectrum.   Autism Speaks presumes to know what everyone with autism needs, and in this piece she paints every autistic person as being one that will never function in society, is missing, and is causing their families great sorrow and pain.

It’s just not true. Beyond that, it’s hurtful. She does not speak for me as a mother of a child with autism and the organization itself absolutely does not speak for my son.

 

 

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Words are not just words.

I’ve been told several times this week than I’m being too sensitive. That the word “retard” isn’t offensive, and that I need to teach my daughter some resilience.

I need to teach Abby resilience? What many people coming to my last post didn’t realize is that is Abby isn’t my only child with special needs. She was the subject of that post because historically speaking, the word “retard” was reserved especially for people with Down syndrome. Everything I said also applies to my autistic son, Casey. My children don’t need to be taught resilience- they live it.  The have endured more in their short lifetimes than most humans will in their entire lives. They embody it everyday as they face a world that does not bend around their needs. It can be too harsh on their senses, too quick for their language, and cruel beyond what you could imagine had you never walked beside them.

My children are made fun of. I’ve seen kids snicker as Casey geeks out on something. I’ve seen them point. I’ve seen them mimic him. Abby faces a world of pity. Don’t believe me? Come with me to any of her doctor’s appointments. Her pediatrician’s waiting room is shared with the obstetrics waiting room.  On the surface, it’s a great idea. Pregnancy. Babies. Children. Yay! I watch the faces of some of the women as they recognize my daughter’s features. Some whisper quietly to the person they’re with. Some point. Some look at her with great pain and pity in their eyes. To the expectant mom in the waiting room, Abby is their worst case scenario.

In too many cases, my children are also the punchline to a joke. I see memes made out of people with disabilities- Down syndrome in particular. When I see a man wearing a superman costume being used as a punchline I see my daughter. I see her in the shape of his eyes, and the smile on his face.

Words are not just words. Words shape thoughts, thoughts shape people, people shape society. Society does not change unless it decides to fight against a word that has been used to harm.  Complacency thrives when people stop trying to be empathetic. It breeds on people saying “You’re too sensitive” when they are ignorant to the reality the offended deal with on a daily basis.   I’m constantly surprised by people who see the offense in racial and bigoted slurs, but see no harm in a word that degrades people who cannot speak for themselves. Why is a degrading word geared towards a group of disabled people any different than a degrading word that speaks of a group of people of a certain race or orientation?

Words have shaped how people view my children. They can give rise to empathy, to respect, to equality- but only if we stop putting up with the words that do the opposite. Words shape how the children on the playground approach my children, they make it okay for the person to post a hurtful meme of a man with Down syndrome, and the perpetuate the pity I see in the eyes of the expectant mother in the waiting room.

Words are not just words.

It’s not too sensitive to require a civilized society to act like one.

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“Celebutard” lipstick- Hey Sephora…

Hey Sephora,

Up until a year or so ago, you’d never find me at a department store buying makeup. I was a proud drugstore make up wearer. I also had really bad skin that was only getting worse. When I switched to Sephora products, not only did my face clear up, but my make up stayed in place and, on the days I wear makeup, I look like I could almost pass for a human. It’s good stuff.

I like the makeup, which is why I’m sad to say that I will not be shopping at your stores anymore.  You got Kat Von D. to create an edgy line of products for you. I get it. She’s a beautiful celebrity that doesn’t look like all the rest. It’s appealing. However, the name of one of your lipsticks goes beyond edgy- it’s distasteful and hurtful.

Celebutard

Celebutard lipstick, an UGLY name for a 'beauty' product.
screen shot from sephora.com

Who were you aiming this at? From what I understand, the name pokes fun at “unintelligent celebrities” by mashing up “celebrity” and “retard.”  It’s offensive, and not just to celebrities whose intelligence you are putting into question by using a term that once was used to describe people with intellectual disabilities.

It’s those people and the people who love them who are hurt the worst.  You’re picking on the most vulnerable in our society by using a derogatory term that historically has been used in gross ways to make fun of them. Would you make products that combine the word celebrity with such ugly terms as ‘faggot’ or ‘nigger’? Did your skin just crawl up your arms a little bit when I used those terms? It should. They are disgusting terms and I hated even typing them out. That disgust you feel when you see those words used is the same disgust I feel when I see someone flippantly using the word “retard.” You’ve used one of the ugliest terms in the English language to describe a beauty product. 

This is my daughter. Using the word “retard” stabs at the disability part of my daughter- her intellectual capabilities- only. It’s a word that reduces who she is to what she can’t do. It’s hateful.  It’s a word far too ugly for this beautiful face.

Abby's so pretty

 I’m begging you, change the name of the lipstick. It’s just lipstick. It’s not worth causing people pain. Sure, maybe it’s driving people to your site, but I assure you, most of them are just shaking their heads in disgust.  If you’re using the name of this product for publicity, well, there’s a special place in hell…

An apology would be appropriate as well. Show people like me that you’re not really as out of tune as it seems.

Your products are made to enhance beauty. Why would you name one of them something so ugly?

 

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Choose to feel.

Of the many choices we have in our lives, choosing to be happy is a lie. I hate that platitude. I HATE IT. It implies that people who are unhappy are choosing to be unhappy. It implies that tears are a choice. That tough times are to be met with  a Stepford smile and blank stare. It implies seeking out the happy instead of seeking out a life that is rich with emotion.  In some ways, it’s like saying “Choose to be phony. Choose to project an image that is not what is on your insides. Choose fluff over substance.  Ignore every color besides yellow!”

Happiness is a bullshit objective if sought for in exclusion of all else. It leaves you standing in the shallow end of a pool filled to the brim of experience.   Choose to LIVE. To Feel. To fight.  To dive in.

Choose to change what you can and embrace what you can’t.  Choose to let life work upon you the gifts of fear, pain, grief and complete helplessness so that you can truly understand those who experience the same. Choose to stop swallowing your pride; to stop choking back emotions that are trying to scratch their way out of you.  Choose to ask for help. To not save your tears only for hidden moments-as if hiding them  could mean they never happened.

Choose to be authentic. To be honest. Choose to speak when it is hard, especially when it’s hard.  Stand up for those who cannot. Speak for those whose voices have not found home inside their throats. Listen when they do.  Choose to have friends who could not be more different from you. Choose to think outside the parameters you’ve built inside your brain.

Cry the ugly cry and laugh until your voice cracks and everything in between.  Let your fears guide your goals.

Feel, dammit. JUST FEEL.

If nothing else, stop apologizing for tears.  Stop making excuses for pain.  Strength is built on being repeatedly broken. Healing.

My life so far is not how I had planned it. These past few months have robbed me of my protective covering. I’ve been raw to the onslaught of reality. With each new wave, I’ve wanted to use my bedspread as a shield and  sleep through the pain until I could awake sunny and happy in a fairy tale of my own design.

But that’s a big steaming pile of horseshit.  I did not design my life any more than you did yours. Happiness is a struggle that is all to often lost to the chemicals in my brain, the circumstances of the day, and yes, sometimes, my own horrible choices. I can choose to live. I can choose to survive. I choose to feel. I want a life where I  am at peace. Where I can be alone and be happy with the company I keep. Where I can know that I’ve given every piece of myself with honesty, if nothing else. And through it all, there is an undercurrent of joy that propels me forward. Joy and hardship are not mutually exclusive.

Happiness is an emotion. It’s just one emotion.

I choose to feel.

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Halloween for the young at heart.

I’m constantly surprised by the thoughts that disturb my sleep. Last night I went to bed weary from a day of stresses coming from all angles, but the one thought that kept me staring at the ceiling was, “They don’t sell size 14 Angry Birds underwear.”

Casey is obsessed with Angry Birds. It’s the substance of his autism-strength focus right now. He saw little boys’ underwear with Angry Birds on it, so of course he wanted it, too. Casey’s big for his age. At only 9, he’s at the small end of his size 14 clothes.  His size betrays his age, his age betrays his heart. Casey is truly young at heart.

That thought lead me to thinking about Halloween. It’s the first thing I woke up to this morning. There was Casey, kneeling by my bed, willing me to wake up. My eyes opened and met his face RIGHT in front of mine. “It’s Halloween tomorrow!”  He yelled so loudly that Lance startled beside me. Then he kissed my face and ran out, arms full of his Angry Bird plush toys that never stray too far from him.

Casey loves Halloween, which is a big deal for a kid with autism. He used to hate it. We’d have to drag him screaming and kicking just to visit the neighbors. Up until a few years ago, he was content to spend it at home with me or Lance, passing out candy.  There were monsters and dark and the scariest thing of all- people.  One Halloween at his grandparents changed all of it. We cheered and high-fived after every trip to the door. He was hooked. He loves Halloween. He loves visiting the neighbors. He loves dressing up. That love only grows as years go on.  I worried what would happen next year, or years after, as his enthusiasm for Halloween seems unlikely to disappear with age.  How would we get him to be okay with giving up Trick or Treating when it became socially inappropriate?

97783df23de311e3a20e22000a9e06a4_7Then, as I was scrolling through my Facebook feed today, I came across this article that my good friend Patty posted:  What you need to know about 6 foot Trick-or-Treaters. The article details a mother letting her 15 year old son go trick or treating with his friends. I have always rolled my eyes at teenagers who come Trick or Treating. That article changed my mind about it. Read it. For me, too, it opened up a new idea: letting Casey Trick or Treat as long as he wants to. Not discouraging his love of Halloween. To be honest, I absolutely love Halloween, too. If I didn’t have crippling anxiety, there’s a very good chance I’d dress all up and join him as well. Why force growing up on a kid that is lucky enough to not give a damn about social norms?

So, this Halloween, if a bunch of teenagers come to your door, or child with his  parents who looks to be a couple years past his Trick or Treating prime, smile and give them candy like you would any one else.  You never know.

We should all be so lucky to live our lives young at heart.

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Abby’s last echocardiogram.

Abby's echocardiogram and graduation from cardiology

The nurse had just finished Abby’s echocardiogram and was off to get the cardiologist for the results. I had been in this situation many times before. This was Abby’s sixth echo. I wasn’t expecting any problems, but have been blindsided in the past and felt those waves pull at me. The doctor came in and went over the echo time and time again. He pointed blood flow to the nurse and spoke in terms I did not understand. PFO? Was it worse? Had something changed again?  Nope. He turned from the machine and met my eyes. Turning Abby’s chart towards me, he wrote so I could see his words, “Not clinically significant. No followup necessary.”  Tingles, the kind that dance along the top of your skin before diving in, radiated down my arms. Everything felt warm.  And then I started to cry.

I hate crying in front of people. I have never met anyone who said they don’t mind it at all. But I’ve made a commitment to no longer hold back. Not for the good, not for the bad. Emotions are not meant to be kept in.

“She’s graduated cardiology!” I said through tears mixed with laughter. The nurses teared up, too. It was a win for all of us.

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Hey EVERY SCHOOL DISTRICT, here’s how you IEP…

I’m pretty sure the Devil had his hand in the inspiration of having my kids’ Individualized Education Program (IEP) meetings just five days apart. It’s the only way in which I could explain it. In so doing, it made it REALLY EASY to compare and contrast what works and what doesn’t work.  Abby’s IEP did. not. work. I wrote about it last week.  Casey’s IEP? Totally worked. So, here for you educators, you district representatives, you therapists…how to make an IEP that works.

Surprisingly enough…most of this you can find in the Individuals with Disabilities Education Act (IDEA), but whatever. That’s in tricky legalese, which is the native tongue of Satan himself.  It’s also not laid out in an easy to read list.

  1. Work with the parents on IEP goals before the actual meeting. If the child is coming from out of district or if an IEP needs to be changed at all, talk to the parents about why those changes should be made and have the data to prove it.
  2. Find a time for the IEP that works for everyone and give at least a week’s notice. The notice should be in writing and should include everyone that will be at the meeting.  At this time, be sure to give the parent a copy of the Procedural Safeguards and explain to the parent exactly what those are.
  3. Make sure the parent has a copy of each team member’s contact information.
  4. Give the parent a copy of draft version of the IEP a couple of days (at least) before the meeting so the parent can have time to go over it, compare it to the former IEP, and note any questions or concerns.
  5. If there are any changes to the IEP draft made after the parent receives it, make sure these are noted at the meeting.
  6. Make sure someone is taking minutes during the meeting and that the minutes are read over and signed off on at the end so that everyone on the team has a clear understanding of what was discussed during the meeting.
  7. Be sensitive towards the parents’ feelings, especially during the “present levels” part of the IEP.  Most parents know very well the areas that the child is having problems with. It’s a tough blow to have them repeatedly pointed out, though we understand this is a necessary part of the meeting.  Evaluations that show where the deficiencies are, and these areas are what drive the goals.
  8. Discuss with the group how the IEP will help the child reach their goals.   Explain to the parent WHY these are the goals, the benchmarks that will show progress, and the methods used.  Explain to the parent how the methods you plan to use have been successful in the past. This can be done by giving the parent the written information about programs you use- books that explain the processes, or scholarly articles that show that the methods used are scientifically based and have had repeated success. Anecdotal evidence is good, but it’s not enough.
  9. Show the parent that you understand their child. If you are from the district  and don’t know the child, don’t pretend that you do. Don’t think because you understand the child’s diagnosis, you understand the child. Parents will see right through you.
  10. Never, ever, talk down to a parent. Do not be condescending. Do not be passive aggressive.
  11. If there are issues with the IEP even after you’ve done all of the prior steps, try to be understanding of those issues and work to find resolutions. Seek creative or outside the box goals. Don’t immediately turn down an idea because “it’s not what this district does.”  IDEA was written so that education would be tailored to the child’s needs, not to what the district has to offer.
  12. Do NOT try to guilt the parent into signing an IEP that they are unsure of.  Do not make the parent feel badly about the time spent or even that there will be a great inconvenience to reconvene another IEP.  If the IEP doesn’t work for the parent, it’s because YOU* failed to show them how this education plan will meet the goals of the child.

I am very aware that there are parents out there who feel their child is entitled to an education plan that is outside the legal range afforded to children with special needs. I know there are difficult parents. But I also believe that they are the exception rather than the rule when a parent refuses to sign an IEP. I didn’t sign Abby’s IEP because I wanted to be difficult or because I thought Abby needs services that go above and beyond what could be defined as “appropriate” for someone with her needs. I didn’t sign it because it was never shown to me how her goals would be met given the decrease of time and services from one IEP to the next.  Her IEP was not data-driven.

I signed Casey’s IEP because everything on it was something that had been previously discussed, was based on data (evaluations and observations in the class), and I felt was written as the best possible plan to meet his educational goals. Casey’s special education resource teacher GETS Casey. She understands his needs. The principal (who also served as the representative for the district- or LEA) KNOWS my son personally. He’s seen him in the classroom and understood going into the meeting what would help him best reach his goals. His teacher provided input as to how to best keep Casey inside the classroom, and works on a regular basis with the rest of the team to support his needs.   In that meeting, we were a TEAM. We worked together.  It made all of the difference.

Is there anything you would add to the list?

12 steps for better IEP Meetings for school districts, educators, and special service providers
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Halo Costume from Goodwill Supplies DIY

Halo Costume from goodwill supplies

This is Carter’s costume that I remarkably got done with some time to spare. Not enough time for this guide to be completely helpful for you before this Halloween, but maybe you can round up all of the supplies before then. It was SUPER easy. Goodwill always has a TON of old sporting goods.  We used baseball leg guards, thigh guards, shin guards on the forearms and elbow guards for the triceps. The chest plate is an old motorcross chest guard. The helmet is an Iron Man helmet, but a motorcycle helmet would have worked, too.

We’re making the gun today. Basically a big nerf gun we’re taping off and painting purple.

Total cost?  $23, including paint.

 

Halo Costume, could also work for Star Wars storm troopers.
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Change

 

“Don’t change” the note said. It went on…” I’m sorry about your dad…Don’t change.”

Two days prior everything had changed. My father’s time was now finite. My father. My one advocate in this world. The person that fought my case to my brothers, to my mom and to me. He saw me for who I was and who I could be and he,  he was dying.

Those weeks between knowledge and finality are a blur of emotion, confused, maybe, by the coming of womanhood that would present just days after his passing. I entered my teenage years sitting on the floor next to his bed, my sister claiming the spot next to him. On my birthday, I sat alone on the floor next to the person who was my lifeline. He was dying.

Trauma, like acid that seeps into the fat cells of a drug addict, has a way of presenting itself in surprising places. You’re never quite without it. What isn’t sweat out or cried out just finds another place to lie in wait.  Trauma changes you.

“Don’t change.” She said. “I miss ‘fun Lexi.”  I was heavily pregnant with my third son. My middle was 18 months and had just been diagnosed with autism. Those first months of his screams still sing in my ears.  The ache of not being able to soothe my beautiful blue eyed boy etched the surface of my heart.  It changed me.

“You’ve changed” he said. Someone whose opinion matters more than it should. Whose words cut deeper because I allow the knife in. I let him hurt me.      Enough.    Instead of being sorry for the change, for once, I embrace it.

Of course I’ve changed.  Until you have spent night after night praying for release from pain, from grief, from worry to a God that does not answer, don’t tell me not to change. Stand with me or just let. me. be. Let me be different. The challenges I have faced in my life have opened me up to a world where depth is the higher power. Where understanding, empathy and love rule and where obedience is a four letter word. I am cynical and I am sad. But I am open to a world that is more vibrant than I could have imagined. Where success stops being based on expectations, isn’t flaunted with money, status, or even with knowing that you’ve done everything the way you were supposed to.

No, success is changing. Is growing. Is becoming who you were meant to be because of hardship, not in spite of it.  I am a patchwork of broken pieces. I have crumbled too many times in my life to count, and have swept myself back together in the form of who I am today. I stand ready to fall. Ready to break. Ready to pick up the pieces of who I am and reassemble them into the person that life is making me. That CHANGE is making me.

I will not apologize for who I am. I will not apologize for my scars. I will not apologize for ripping this blog –this extension of me- to pieces in an effort for authenticity. I like who I’ve assembled myself to be.

And I love my life.  Depth in pain means greater depth of joy.  Learning at just thirteen how finite life can be has made me appreciate the love of my family every single day I get with them.  Hours spent aching to soothe an autism that raged has made the simple act of calming my children to sleep a gift. And losing faith has worked in me a spirituality that is new, quiet, calm, and beautiful. That bends and shapes then reshapes itself into me, and not the other way around.

I have changed.

I will continue to change.

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Advocacy achieved through awful pop music

“I’m sorry you have to see this,” I said to Lance as I connected my iPhone to the cassette player in my car (it’s hipster to use both a cassette tape and an iphone for music) and turned the volume way up.  What blasted through the stereo was a Katy Perry song that I’m ashamed to say I own, but was SO fitting, and SO terrible all at once. Have you heard her “Roar” song? It’s quite possibly the worst written song ever. BUT, it’s fantastic “music” to pump yourself up to before you go into a fight.

Except, this wasn’t a fight. It was an IEP meeting. I prepare for these meetings like athletes prepare for the big game, which includes a pre-game warm up. I sang the words on the top of my lungs and punch danced as we wound through the streets of our town while  Lance seemed to focus on actively repressing what he was witnessing.

I have a hard time with confrontation. I’ve used the word “fight” to about the work I do to make sure my kids get the services necessary to be successful in school. It’s not a fight. It’s advocacy, and there’s a big difference. My pre-game routine isn’t to get me to a place where I can yell, scream and demand at these meetings. It’s to get me in the mode to advocate, even when it’s hard. Even when it makes everyone in the room really uncomfortable because I will not bend as far as they are asking me to.  For me, standing up for myself and my children is equivalent to win in any sport; TKO in a fight.

Abby’s IEP meeting lasted 3 hours. We started off on the wrong foot to begin with- I was told about the meeting exactly 26 hours before it started. No prior written notice, no agenda, no draft of the IEP proposals, nothing. I was caught off guard. I spent most of Wednesday night combing through IDEA and state laws about the things I knew would be issues at the meeting. I earmarked all of the things in the law that I thought would need to be discussed. I studied and studied and studied.  For me, it’s easier to advocate when I can make federal law the jerk. Without an understanding of IDEA, I can’t do that.  The meeting was good, for the most part. I fully believe that Abby’s team cares for her and wants her to succeed.  I believe that is the case in most districts country wide. I also feel like there has to be some give and take.* I was aware going in that there would be a reduction in total hours of service. That was fine so long as they could show me that her goals would still be met even in a condensed schedule. They could not do that. The person from the district suggested that we simply take out the extra hours, see how it goes and then if she wasn’t progressing we could add them back in. In my brain, I laughed and laughed. In measured tones, I explained to them that I would not remove something on the hope that the district would happily put it back in because I knew adding an unconventional piece to an IEP is damn near impossible. She didn’t disagree. We went around and around. I pulled out my copy of IDEA and read where I believed they were not in compliance with federal law. All legality aside, I kept coming back to this one thing- the one thing we all could agree on- Abby’s goals, which were born out of exhaustive evaluations, need to be met. We cannot fail her. When I spoke of goals rather than hours, of her needs rather than of service time, my point was made.  I wasn’t there to get for my daughter anything that was unreasonable. I did not advocate for anything for my daughter than was not outlined by the law.

I did not scream. I did not cry.

And in the end, I did not sign the IEP.

I had excused all of the therapists by the two hour mark.  I sent home my husband and kids. The school was empty of students and staff, the halls were dark. I sat with the district representative and Abby’s teacher in silence. I had outlined my closing argument. I had told them where I would bend (total service minutes, flexibility in Occupational Therapy push-in/pull-out and consulting time) and where I would not (any reduction in speech therapy time). I used the law to guide the conversation about how we would proceed and then waited. The silence was unbearable to the point where I wanted to pacify. I wanted to make things okay. I wanted to give in to quiet the anxiety that pulsated in my veins…

…to a beat…

…for a moment I was back in my truck punch dancing to pop music. I looked back and saw Abby doing the same. Punch dancing. This wasn’t about me. It wasn’t about them. It wasn’t about the uncomfortable silence beckoning me to give in. It was about her. Only. Her. Grateful that I had followed my stupid routine, I thanked them for the meeting and their understanding and thoughtful discourse, gathered my things up and left.

I’m confident that we’ll come to an agreement that provides Abby what she is deserving of under IDEA. Like I said before, I honestly believe that we’re working towards the same goal. We just have to agree on how to get her there.

Advocacy and IEPs

 

 

* (boring stuff that you don’t need to know) We came from the side of the country where IDEA is interpreted in what I believe is a much more progressive manner. Abby’s Rhode Island IEP had her going to 5.5 hours of school a day, half in a self contained classroom where all of her therapy was done and where they worked exclusively on IEP goals. The second half of her day would have had her in a regular preschool classroom, where she could work on social skills and where there was inclusion with typical peers- in IDEA speak, least restrictive environment, could take place.  Her entire day was spent in language rich environments where they were actively working on her IEP goals.  The program here is 2.5 hours a day, four days a week in an integrated classroom. During those 2.5 hours, she’s pulled out by her therapists for her individual services.   My issue was the reduction of TOTAL hours in school and that they wanted to reduce the time she spent with a speech therapist. Abby’s verbal communication skills have all been lost. She doesn’t even babble like a baby. She does not imitate. The regression took it all.  They can’t REDUCE her speech time without evidence done by evaluations that shows she doesn’t need it.  They can’t have both- the reduction of time in a language rich environment by more than HALF along with a reduction in speech therapy. If anything, they should beef up the services she’s getting to make up for the deduction in total learning time.

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Pearl Jam.

Tuesday the new Pearl Jam album comes out. I’m doing what I do every time a new record comes out: wish that vinyl was still readily accessible and that vintage players weren’t so dammed expensive.

Also, I pay homage to Pearl Jam. I find out what they’ve been up to, watch videos of our last precious time together, and listen to all of their old records. I’m a huge Pearl Jam fan. But I’m not the Ten-Club membership holding, know all of the history type fan (though I would be if I had the cash and brain space). I just really really like their music. Pearl Jam’s lyrics could easily be the  soundtrack to my life.

I will do with this new album (I’m streaming it as to get an early start) what I’ve done with all of the previous: listen to it a million times. Unlike any other band, I do not tire of their music. I listen to it until it seemingly imprints itself onto my DNA. Until it’s embedded in my fat cells and until it’s lined my tear ducts. So that in times of great exertion or sadness or both, it’s there. Dripping from me in lyrics. Right now, I’m hearing:

“Oh, dear Dad, can you see me now?

I am myself. Like you somehow.

I wait up in the dark for you to speak to me.

I hold the pain. Release me.”

(Lyrics not in that order)

Carter asked me tonight what life would be like if his grandfather hadn’t passed away. I don’t know, I told him. I miss him a lot.

Pearl Jam has been the background music to my life. Given to Fly is the theme song to Casey’s autism.  The lyrics of “Unthought Known” swept through me as I held my daughter the day after she was born when my OB told me how sorry he was that her extra chromosome was “missed” during the pregnancy-

Look for love in evidence
That you’re worth keeping
Swallowed whole in negatives
It’s so sad and sickening

Feel the air up above
Oh, pool of blue sky
Fill the air up with love
All black with starlight

Feel the sky blanket you
With gems and rhinestones!!!
See the path cut by the moon
For you to walk on

The other day at Casey’s field trip as I was trying to step past my own selfish sadness, I made this:

Pearl Jam

So tonight I’m working the music, mood and lyrics through me.  The first time I heard the single “Sirens,” I actually had to turn it off. My heart beat out of my chest and I felt overcome. It starts, “Hear the sirens, hear the sirens…” Eddies voice, as if a quiet hypnotist, swiftly took me to  to the place where I hide my pain. Where the trauma lives and breathes and works its way out in sputters and coughs or in downright illness. I’ve spent too much time listening to the sirens of ambulances from their insides.

Hear the sirens, hear the sirens
Hear the sirens, hear the circus so profound
I hear the sirens more and more in this here town
Let me catch my breath to breathe then reach across the bend
Just to know we’re safe, I am a grateful man
This light is pit, alive and I can see you clear
Oh, I could take your hand, and feel your breath
For feel that someday will be over
I pull you close, so much to lose
With a Truman Show-esque narcissism, I could fully believe these words were written for me. How many times have I heard the sirens screeching out to the world around, blaring the pain I felt ripping through me as I held my daughter’s hand and worshiped the struggling breath I felt coarse its way through her constricted chest and obstructed airways?

  Empathy in prose. Understanding in pain. Lyrics formed to suit my existence.

Yes, this post is akin to Lukin-type fan drudgery, but it is real to me. Music works in ways that words do not. I’m jealous of those that have the ability to emote in such a way that the experiences become shared, no matter how differently they are lived.

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Pay Attention.

I spent most of last Thursday driving to and from the Autism Center in Seattle. The roads are narrow, and getting around is difficult. You rely very much on other people’s kindness to make it to your destination. I watched as person after person drove past me as I was trying to turn onto the main street. My frustration grew as each car went by. “JEEZ! How selfish can you be? It would take you all of five seconds to slow down enough to let me in!” I yelled at the cars as they rushed past. Then I realized what was happening. They didn’t see me. In their hurry to get to their destination, they didn’t see the frazzled woman in the beat-up SUV desperate to take her son to an appointment neither wanted to go to.  The other drivers weren’t paying attention.  When someone did catch my eye, they hit the breaks and motioned me in.

I’ve spent too much time this last week talking about politics and being angry at people who I think just don’t get it. I spoke of how selfish people are.  Driving around the crowded Seattle streets made me rethink that. Maybe they’re just not paying attention.  Maybe I’m not, either.

I wrote last week about my desperation in the situation with the government shutdown. I was scared and sad and, honestly, not in a very good place.  You were paying attention. You sent me emails with support and resources for finding work. You bought ad space and are working to help me find writing jobs within your own communities. Your kindness to me allowed me to move forward on my way to whatever destination will come. Thank you for paying attention.

After I had posted that blog, I was listening to the radio and heard a story of a woman who was worried about her food stamps running out. She and her husband had been laid off from their good jobs- they both had graduate degrees- but do to the economic climate, have not been able to find work in the last couple of months. They have three kids. She was worried about FEEDING her children.  In my own desperation, in my own need to get where I was going, I wasn’t paying attention. Up to that point, I had only thought about how the government shutdown affected me and my family.  I didn’t realize that it could be much worse for a great many people.  I searched for more information. The Women, Infants and Children program (WIC) – a government provided nutrition program- initially thought that their doors would close immediately, have only enough emergency funding now to keep their doors open for a couple more weeks. I am not ashamed to say that I once participated in that program while Lance and I were in college. I had to quit working during my pregnancy after I was put on bedrest, and after Carter was born too early with respiratory problems that took months to get over. We relied on WIC to feed our child.  I’m so grateful for that program and when I saw that it was being shut down, I dug deeper to see what was being done.

People are paying attention.

I found women rallying with other women to provide formula, food, and other necessary items to help people who could be hurt. A list of where to get help  can be found here: http://www.feministhulk.net/wic-and-shutdown-where-to-get-baby-food-and-formula.html. If you can help add to the list, or have resources that you want to use to help, please contact the blog owner or the people listed under your state.

There are a lot more people out there in need of help, some affected by the shutdown, others by their current circumstances. I resolved when I saw what those people were doing for people on WIC to do more. To pay attention.

It’s easy to find people you can serve if you’re looking for it. It didn’t take me long. I know a woman who has taken her five beautiful children and left an abusive marriage. Her husband refuses to support her and the kids, and she doesn’t have the money to pay for a divorce lawyer that can go toe-to-toe with her husband’s legal team. She’s been able to get into housing, but the state only offers classes on how to file for divorce yourself. She was able to find a lawyer who will help her divorce her husband and force him to support their children,  and who will do it for only $900. A wonderful man that I know has been working tirelessly to raise that money. They’re close. If you’re interested in contributing, the paypal address to contribute is ryan@ryanswallow.com.

I know that food pantries are going to be low and in extra need of support- especially if the government does open back up soon.The food program for schools only has enough money to run through the end of the month. Even if the government shutdown ends tomorrow, it looks like there will be drastic cuts to food stamps benefits.  This is a great way to help people who truly need it, too.

Whether it’s as simple as letting someone in while you’re driving, being extra kind to the frazzled mother at Target, or giving of your time or money to help someone on their way, a little bit of kindness goes a long way. I have been fortunate to time and time again be on the receiving end of people who are paying attention. People who care. You continue to teach me how to be better.

If you know of any other organizations or groups that are helping people during this shutdown and beyond, please post them in the comments. I even want to hear about companies who are going above and beyond because those are the companies I want to give my money to.

And because weird crap comes up when I post this to facebook if I don’t have a picture (and I’m entirely too lazy to figure out how to fix it) here’s a picture of Abby after I fished her from the toilet (again) the other day. She is as fast as she is disgusting.

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Compassion

My bishop in our new Rhode Island ward (congregation in Mormon-speak) accosted me in the foyer and asked if I had a minute to talk to him.  I nervously answered ‘yes’ and we walked back to his office. He sat on the edge of his desk and spoke kindly to me. “We have a calling for you…” I cut him off  “before you do…there’s something you should know.”

I waited for my anxiety level to rise, but it did not. I simply squared my shoulders and said, “I no longer believe.”  He leaned back, and crossed his arms over his chest. His eyes seemed to tear up a little as he gently asked me why.  I told him a little of my story. He asked questions and just listened. He didn’t judge. He just wanted to understand.  I told him that I wanted to attend because my husband still believes, but that I would not pretend to be something I am not.

I braced myself for what he’d say next. I had heard horror stories of bishop’s condemnation from people who will never set  foot back into the church.  Tears flowed as he said, “While I hope you will come back to a testimony of this church and of the Book of Mormon, I want you to know that we just want you here, no matter what. The church needs more people like you, people who think for themselves.”  Crying now too, I shook his hand and walked out.

What he did was invite me to stay in the church as I am. What he did was show compassion over condemnation. He could have given the apologetic responses I’ve heard for my issues, and we could have had a lively talk about church doctrine. We could have fought over feelings and history. He could have told me the things I had heard from others: “You’re under the influence of the devil.” “I feel so bad for you. Your family is going to pay for your choices. How could you do that to your family?” “You’d seriously give up the blessings of eternity over gay marriage?” and the like.  But that good bishop realized that those tactics do not work. Inflicting pain does not make a person want to stay in the place where the pain is felt.

This weekend was General Conference for the Church of Jesus Christ of Latter Day Saints. I still listen to all of the meetings. My husband believes, and I want him to feel that his beliefs are as welcome in our home as he has made my beliefs. Some of the talks given were beautiful and necessary. Some made me angry and sad to the point of tears. I wonder if the brethren know how much what they say does to the members who are on the edge or even members like me who are on the outside. Some talks were given with the same compassion as my bishop displayed that day. Some, while true to the doctrine the church believes, will push people away. It makes me sad.

Today, I’m most sad for the women who were turned away at the doors to the Priesthood Session of the conference. They are a group of faithful Mormon feminists who seek to have equal standing in the church as the men. Contrary to what was said in a certain talk, they do not seek to be just like men. They don’t seek sameness. They seek the ability to serve in positions equal to men. To have an equal voice. They want to do more in the church that they love. These women are better than me. I entertained the notion of agitating faithfully from within the church to change the things that I feel strongly about, but in the end, I could not do it. It was entirely too painful for me. These woman face that pain time and time again with great courage. They’re trying to stay in a gospel that they love and how they are treated in return will have an effect on their relationship with the gospel in the future.  I watched in real time as these women who had waiting in line for hours were pushed to the side so that the men in the line behind them could pass them and enter the meeting. Any man, whether a Priesthood holder or not, gained entrance to the meeting. And, unlike meetings specifically for women where men are allowed to attend, no woman was allowed in.  I watched as they each took their turn, one by one, and asked for entrance to the meeting. Each time being given a simple ‘no.’

A woman being denied entrance to the Priesthood meeting graciously smiles through her tears.  Photo used with permission by photographer and subject. The rest of the photos can be seen at http://www.flickr.com/photos/104456736@N08/with/10112225866/
A woman being denied entrance to the Priesthood meeting graciously smiles through her tears.
Photo used with permission by photographer and subject. The rest of the photos can be seen at http://www.flickr.com/photos/104456736@N08/with/10112225866/

What harm would it have done? Would letting these women in mean concession? No, it would have meant compassion. It would have been akin to my Rhode Island Bishop offering me a seat in the church just as I am and being grateful only that I was there. As these women walked away from a church building they were just one-by-one denied entry to,  a talk was being given inside…

 “So my brothers, it is your duty to reach out anyone who appears at the doors of your church buildings. Welcome them with gratitude and without prejudice.”