Thursday, March 8, 2018

autistic perspectives

Holy cowsers. It's been three long months. Which have also felt like short months some days. I've missed you. I can't begin to tell you how excited I am to share these words with you. Some of the coolest and MOST important words I've ever shared --and I can say that because they are not mine.

Sometimes, (especially lately), my heart can become very heavy with the words that are spoken about autism in the general public. These individuals are judged, discriminated against and so incredibly misunderstood. These people are my babies and I have to do everything I can to share autism awareness with the public. And there are so many other beautiful babies (and adults) in the world that I am advocating for too. Our children have gifts. Autistic people's lives matter. 

The other evening I put my pajamas on at 6pm. I felt helpless. I felt depressed. I started to cry to my husband. "Could you imagine being judged simply because you had neurological differences? Could you imagine if people thought they knew who and what you were, simply due to a diagnosis? Why is it ok to discriminate against people who are different? IT'S NOT OK! I was doing that yelling, crying thing. When mad and sad compete. WE HAVE TO CHANGE THIS, I NEED TO CHANGE THIS, I told my husband. 

"But you are. With your blog and your Facebook page and the information you share", he said kindly. 

"YES, BUT IT'S NOT ENOUGH", I said. "Because I see discrimination and judgement and stereotypes every day".  

The next day I felt a sadness hangover. And then it came to me- I don't have the answers to change the world alone, but I can get a little help from people who DO have the answers. So I put a message on Facebook requesting to be connected with teens and adults with autism. I needed their important feedback that only they could offer. 

To begin, I want to share that most parents use  Person First Language. That means the person is put before the diagnosis. A child with autism. A man with autism. However, in the autism community, many self advocates prefer Identity First Language. They prefer terminology like, “Autistic,” “Autistic person,” or “Autistic individual” because they understand autism as an inherent part of an individual’s identity. So for this post I am using Identity First Language. 

I was so happy to receive feedback from many autistic teens and adults. I read through all the responses, laughing and crying. It was eye opening and amazing. I asked most individuals the following questions:

  • What’s important for parents of children with autism to know?
  • What do you wish the general public understood better?
  • How can the world be better adapted for your needs (schools/communities/jobs/etc.)
  • How would you answer this. “I wish the world knew how hard it is for me to:”
  • Do you have sensory seeking or avoiding tendencies? What does that feel like?
  • Anything else I should know? 

So now, with much excitement, I am going to introduce you to my awesome panel of autistic experts! I also shared this info in a Facebook Live Video HERE.

First, meet Brad. He is awesome. He’s a friend, and he gives the best feedback on my page and his insight helps me parent my boys better. True story. Here are his words.

something i wish more parents knew is not to worry about the future so much, dont give up hope. so many parents are told us autistic people will never do much in life, we wont graduate, fall in love, get married, work etc so people write off our future before we have had a chance to live it. sure not everyone will reach the same things in life but not everyone wants that. just dont give up hope because even for the most severe it can still happen and if it does not then maybe that person does not want that. our lives may not be typical but that does not make them any less. something the public should understand is just because we cant always talk does not mean we dont understand, you might get no response but that does not mean we did not understand. we are not stupid tho we can play stupid if it benefits us lol. but people talk about us like we are not even there. its frustrating. something the world should look at to better fit our needs is making the world a more sensory friendly environment can do so much for us. like schools and work places would get so much more out of us if we did not have so many sensory issues to deal with and we need autistic people involved with cutting down on the sensory issues since so many nt people dont feel what we feel. also the world should learn communication is so much more than verbal. give us lots of different options to communicate and respect that. i wish the world understood how hard it is for me to try to fit in their mold of what they feel a person should be, i cant be nt no matter what people do to force that. i am both a sensory seeker and avoider. when its bad sensory it hurts, like its the worst pain someone can imagine at times. when its good sensory its like its the best sex ever, it just feels so good and gives you a sort of high and deep relaxation. its amazing.

i wish the world understood and accepted stimming. for me stimming is more essential than air basically. its something i need. but the world looks at you crazy for it.

oh and i wish the world understood being autistic is not a bad thing, no cure is needed. we are not a epidemic

oh and i think the autism community needs to work on training police on how to treat us because time and time again police dont know how to treat us, we get abused and then in the future we wont seek out the help of the police when we need them the most. years ago i was groped on my porch by some guy and i would not call them as i saw police as another danger since they dont speak autism. i had people break in and i would not call them. also schools should not call the police over a simple melt down. 

Are there any general sensory things parents and educators should be more aware of- besides just lighting (I hear flurescent is bad, is this true?

yeah lighting is bad both the flashing, the sound, the smell of fluorescent lighting. floors can be a bad sensory issue, the way lighting can hit it it can cause a glare of sorts. then there can be patterns of the floor and textures and smells and sounds of things moving across it and because flooring takes up so much space it can be very overwhelming. some seating can have a bad glare to it too, same with things like tables. anywhere you can cut down on glare is a good thing. also i wish places would be mindful of smells, like for example stores here like strong smells around the doors like christmas they put a strong cinnamon smell around the doors and it makes you so you dont want to go to the stores and with so much food coming from the stores it can be very difficult lol.

And now meet Jonathan. Jonathan and his wife are autistic. He is a dad of three, and he shared his children may all be on the spectrum.

1. What’s important for parents of children with autism to know? 
You’re child is not broken. He or she is a beautiful, wonderful, gift from God. Everyone has strengths and weaknesses. This includes kids with autism. You need to try to discover what your kid is good at and what interests him or her. Some might call this obsessions we call them special interests. • From my experience, children with autism don’t always know what they want so melt downs happen. You are not a bad parent when this happens. Your child is crying out for your help. Their melt downs are not being “strong willed” or naughty. They simply don’t have the words to express themselves. • Don’t postpone therapy. The sooner you get help the better. Fear of the unknown is worse than continuing without help. And there is a lot of help out there if you look. Therapy has been life changing for our family.

2. What do you wish the general public understood better? I wish people were more sympathetic towards people with ASD. It also feels like unless you have an official diagnosis people with ASD are not taken seriously. I wish people didn’t automatically assume parents are doing a bad job with their autistic children. There seems to be this idea kids in the spectrum when they have melt downs are trying to be strong willed, aggressive, mean, or angry. Many times kids have melt downs as they are overwhelmed with too many sensory inputs including a lot of noise, strong lights, strong smells, bad tasting things, being touched too much, or crowded areas.

3. How can the world be better adapted for your needs (schools/communities/jobs/etc.) Schools: Become aware of bullying issues at schools. Most often autistic people or Neurodiverse people suffer more bullying then Neurotypicals. Offer training for teachers, administrators, and other parents about autism and other mental health issues. Special Needs is not just for special education teachers. Communities: Become more inclusive of autistic people. This means inviting the autistic kid to birthday parties. It means getting to know her parents who have autistic kids. This means understanding that sometimes people autism or very blunt and don’t mean to be rude. Employers: Many employers make reasonable work accommodations now. This is required by and protected by law. An official diagnosis from a licensed therapist is typically required to be taken seriously. At my job I have a cubicle all by myself and I’ve been provided head phones as the office can be very loud.

Of note: Three federal laws protect the rights of people with disabilities, which can include people with learning and attention issues. These laws are the Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.

4. How would you answer this? “I wish the world knew how hard it is for me to...” • Listening to conversations. I hear conversations all at the same level as other noises. So if more than one person is talking in the same room to me they are at the same noise level. Also, there are other inputs such as strong lighting, strong smells, or other noises it is hard to focus. I become anxious or overwhelmed after a time and need to get away. The way I cope with this is reading lips. There’s also interesting enough gives the appearance of eye contact at times. • Driving in traffic. There so many inputs including sounds, lights, at times smells, unpredictable people, etc. • Engage, play, and take care of children. I know parents were new or typical have a hard time with this as well. However, for me the crying, fussing, yelling, unknown reactions, etc. or even harder I think that most people. I literally get really bad headaches when my kids cry for any period of time.

5. Do you have sensory seeking or avoiding tendencies? What does that feel like?

• Scratching Throat
I’ve had a tendency since I was a kid to scratch my throat. I sound a lot lot a pig. It feels good on my throat, nose, and ears. It also helps relax when I’m nervous. Often I do this thing without realizing I’m doing it. When I do it in public people look at me kind of funny. I typically just ignore others or try to do it softly.

• Headphones
I find noise cancelling Bose headphones to be a life saver. I literally calm down in minutes after having my headphones on. If I listen to my music 🎶 for a bit I’m a different person.


I also corresponded with Sarah.  She is a Teacher, she’s open and she wants to use her experiences to help others. You can follow her on IG @ @adultswithautism

Sarah wasn’t diagnosed until she was 21. She says, “I went through the diagnosis on my own because it was important for me to know why I felt so different. A lot of people don’t like labels but hearing that I had autism was such a relief for me.” 

I wish the general public knew that just because I can drive, have friends, have a successful job as a teacher and other “normal things” doesn’t mean I don’t have autism. I internalize a lot of my thoughts and behaviors until I am alone because I feel uncomfortable with the looks I get. This means, that after a long day at school, I usually spend the majority of my hour drive home stim-ing. I think the world in general should just be more accepting of invisible struggles. 

I wish the world knew how hard it is for me to socialize. It is difficult and overwhelming but sad at the same time. I want to have lots of friends but I chose to be alone most of the time. I wish I didn’t feel anxiety in social situations. 

I am very sensory seeking and rock a lot. I also have a weighted blanket for pressure and love swings and rocking chairs. I play with putty and fidget spinners when I’m anxious. I also get overwhelmed by certain noises. I have a strong olfactory sense and can become very relaxed when smelling familiar scents. I tend to be alone a lot of the time and use that time to relax or recuperate from a long day or stressful day. 

Rachel is an awesome 18 year old who is successfully learning to self advocate. Yesterday on Facebook I shared a letter she wrote to teachers and coaches at the beginning of the school year. 

She shares “a lot of my teachers don’t understand me and expect that I know everything like my classmates and if I don’t then they think I’m stupid. I want more teachers to learn about autism. I wish the world knew how hard it is for me to get my words out when I get upset. I hit my head when I’m mad or when there are noises that I don’t like. I like deep pressure. I usually get a headache when I’m overwhelmed. I wish the general public understood that teens with autism have our challenges and it’s okay to ask us about our autism. Not everything is going to be easy for me and don’t stare at us in public.”

Sarah (yes, another Sarah) is a Special Education Teacher, and is funny and insightful and she has an important voice.

What’s important for parents of children with autism to know? 

When meltdowns happen don’t try and hold our meltdowns in because of what it might look like to others or your embarrassed. It’s out only way of regulating and the only way to bring our world back to homeostasis. Also we don’t always flap when we are overwhelmed in a negative way, a lot of the time it’s because we are so excited that our body shows it with a bang! 

What do you wish the general public understood better? - That people on the spectrum can be gainfully employed and live a productive life. We can get married, have kids, and do everything else everyone else does just sometimes in a more blunt, not always socially appropriate, high interest way! We try so hard everyday to put ourselves in your shoes to empathize, but sometimes we just don’t get it... and that’s okay. 

How can the world be better adapted for your needs (schools/communities/jobs/etc.) Explicit instruction!!! Good lord, if people would stop with the sarcasm, hidden cues, and slang everything would be so much easier! However, since that will not happen, please be patient with us, we are really trying to understand. I wish the world knew how hard it is for me to make friends. Even as an adult, the entire concept is mind blowing and makes absolutely no sense. 

Do you have sensory seeking or avoiding tendencies? What does that feel like? Anything else I should know? - I only have meltdowns when I’m sensory overloaded. It starts with a tingle in my spine and I know it’s coming. There is no way to avoid it, only prolong the time I have to get somewhere socially appropriate to have my melt down. When the lights are too bright, when the sound is too loud, when my clothes is too tight or too lose or too much texture or theirs a winkle that’s not suppose to be there, when the lights buzz yet no one else hears it, or since you are an adult and can’t always just eat your 3 sensory safe foods the world can be a devastatingly upsetting place. It’s like a time bomb constantly waiting to go off and unfortunately as an adult you don’t have the luxury to meltdown when you need too, especially as a teacher with a room full of teenagers waiting for instruction. It starts with a tingle. Then goes to the shaking of my leg, then to hand flaps (small at first) to head ticks to an indescribable feeling that my skin has ants crawling on them/ on fire. Every fiber of my being is going off and there’s nothing I can do but hold it off just enough time to get my class covered and into a single room bathroom that’s safe. Every day is a battle and I’m exhausted.

Mariel shares some important words with us.

Hi. I have a high functioning type of Autism. I feel the world has put a stigma on people who are different. I feel labeled every day. I wish the public knew how it feels to be labeled and so not understood. I wish the rest of the world knew how hard it is for me to understand people's feelings, because I struggle with that.

I battle with feeling so misunderstood every day. And those without autism don't get it at all. I think that society gives us a stigma, and a bad one at that. I know I feel that way all the time.

Peri is an articulate, awesome, 21 year old and wants to be a special education teacher some day. She has a Facebook page called Not Raingirl.

I suppose what I want the general public to know most is that we are members of society and we should be treated with as much of respect as neurotypicals. We have so many gifts to offer society that we often don't have a chance to share because people are too quick to judge and label us especially as we reach adulthood and lose that "cute quirky persona" and instead it just gets labled as weird and creepy as we are not acting as "typical adults" we can be valuable members of society you just gotta give us a chance.

The world just needs a open mind like often schools and employers put barriers up impossible barriers for us to reach because of our needs it's like they are setting us up to fail. Yes we have a disability and yes that can cause us to find a lot of things difficult but it does not mean we shouldn't be given a chance. It all just comes down to having a more open mind and seeing us and our autism as two separate things because often schools/ places of work just sees it as a whole which leads them in focussing on our disabilities like a medical record instead of actually focusing on the person we are. Everyone Having an open mind could open so many doors for us.

I wish the world knew how hard it is for me to show how much I care for the ones I love.  There's the big myth of people with autism having no empathy which is crazy because in fact we care too much. I find it extremely difficult to show and receive love in the "right" ways. I often get mistaken for being cold, harsh and rude because I don't go hug my crying sibling in fact I often shout because of the awful noise they are making but I'm also shouting because I can feel there hurt so deeply that it's causing me pain and I don't know how to make it better for them and that crushes me because I'm human just like you. I wish I could express myself in the typical ways but I know that can't happen so I just wish the world could understand that we do care we care A LOT.

Do you have sensory seeking or avoiding tendencies? What does that feel like? Personally I'm both a sensory seeker and an avoider. I crave deep pressure as I often feel like a balloon just floating around it's hard for me to feel grounded so throwing myself into walls, climbing in tight places, getting tight bear hugs and weighted blankets/vests help me feel more solid helps me gain that body awareness I don't usually have.
Hot wax, cake batter, clay, water, paint are all great things for me to put my hands in I can't explain it it just feels good between my finger tips. I like the way water feels as I swish my hands around in a pool.

However there are also some textures that I gag if I touch because as well as feeling the itchy nylon shirt I can also like taste the texture and then I can smell the texture ands it just gets so overwhelming that I gag and even sometimes I even  puke.

Noise is another thing that I avoid massively, I have to wear my noise cancelling earphones just to get through each day as everyday noises can cause me such pain. There are some sounds that are so bad I can taste the sound; like the sound of forks scraping across plates is enough to have me gagging and puking. The sound of people eating is enough to send me into a wild rage it's like I have no control over my body because even when the sound has stopped I can still hear it it's like never ending touture.

I love light machine, laying in a dark room looking at all those lights fly across the ceiling is like my own personal heaven however I can't stand the sight of the sunlight shining through my window it's too bright it burns my whole being.

We can be very hard people to love especially as adults because we have often gone through so many rejections already so we put up even more walls to protect ourselves. We are prisoners of our own mind but it dosesnt need to be a life sentence we just someone special to find the key. We need people to stop trying to bring us into your light and just let us bring you into ours because just because at first you can't see our light does not mean we are living in the dark.

I'm so happy Chris shared with us too –He runs a wildly popular page called, “Autistic not Weird.” He is an autism speaker from Nottingham, England and gave me lots to think about.

What’s important for parents of children with autism to know?
In my opinion and experience, the best things parents can do for their autistic children are:
1) Enter their world. Lining up toys or watching YouTube on repeat may not appeal to the general population, but it clearly means something to the person experiencing it. And for a child who struggles to meet the world's demands, it means an enormous amount when somebody makes the effort to meet them where they're at.
2) Push them outside of their comfort zones. Obviously this is one to be careful with, because anxiety is very real when it comes to autism. But the best thing that was done for me was being given opportunities (sometimes pushed!) to leave my comfort zone, but with the cast-iron assurance that support would be there if I needed it.
3) Find things for them to take responsibility for, which are appropriate to their age, development and interests. Responsibility builds people.

What do you wish the general public understood better?
First of all, the best thing they can do for us is see each autistic person as the individual person they are, rather than just a walking syndrome. Autistic people differ from each other for exactly the same reason non-autistic people do. Just because we have a diagnosis doesn't mean we can't have a personality too.

How can the world be better adapted for your needs (schools/communities/jobs/etc.)
When it comes to schools, it's a matter of hiring understanding staff and giving schools the bloody funding to cater for children with learning difficulties. And (both for those with and those without learning difficulties) stop the focus on one particular method being "the right method" for all children. Maybe if people think differently, we should let them approach problems differently.
In the adult world, I'd turn the job interview process on its head. It's not the best candidate who gets the job- it's the person who answers the questions best. Job interviews are a big example of how the world has been built with "everybody else" in mind, and people should be offered jobs based on their competencies, not on their level of interview skills.

How would you answer this. “I wish the world knew how hard it is for me to:”
Wear a non-autistic mask all day, whilst fearing judgement from other people whenever it slips, because life experience tells me that people will scorn me for reasons I don't understand, but also not explain what I did wrong or how I can meet their expectations better.

I have a refreshed outlook on autism. On the strengths these incredible humans have and share with us, while navigating through a world that doesn't always understand them. I am so grateful to each individual that shared with me and the entire world. Together we will continue to fight for a world where neurological diversity is celebrated, not judged. 

Friday, December 15, 2017

my dream

Today is my birthday, and there's only one thing I want. But I just don't know how to get it. I think if we work together, it can happen in time. That is my prayer.
I think about the great Dr. Martin Luther King all the time. King used the power of words and acts of nonviolent resistance to achieve seemingly impossible goals. I think about his words, his heart, his brave mission. His family. His ideals that cost him his life. And all he wanted was equality. Thinking about that is gutting. I read his "I have a Dream" speech several times a year. It literally makes me sob out loud.
I think about the equal rights I have simply because I am white, and I am a typical learner. I took these rights for granted until I became a proud mother to two boys with autism. And suddenly my eyes were opened to a stark reality of inequality for some. Simply because of the way they were born. Separate but equal is still not equal. Especially when the separate is so not equal.
I think about the peace that's been stolen from my family, relentlessly fighting for School District equality the past two years. This is not a teacher issue. It's a top down issue of culture and the belief that we are all deserving of an individualized education, and the resources and training to achieve that.

So today I channel Dr. King's brave words. I have a dream that our children would be judged on the content of their heart, their soul and their unshakable resilience. Not on their IQ, their unwanted behaviors, the additional resources they need to achieve equality, their diagnosis or their classroom placement. They are some of the most incredible humans on earth, living in a place that doesn't always understand them.
I have a favor? Please help me share these words. Regardless of color or creed or neurological differences, we are all equal members of the human family.
So much love,
Chrissy Kelly

Saturday, November 25, 2017

option B

Brilliant author and COO of Facebook, Sheryl Sandberg, was grieving to a friend because there was a father-child activity that her recently deceased husband, Dave, was no longer here to do. 

Sheryl shares, "We came up with a plan to fill in for Dave... But I want Dave. I want option A.” While crying to her friend, he put his arm around her and said, “Option A is not available. So let’s just kick the shit out of option B.”

We recently decided we need to homeschool Greyson. We aren't sharing the details, other than to say this is the right thing for Greyson right now. Life is too unpredictable to speak in forevers. (I have to remind myself of that often). Despite significant advancement in Federal Laws, I am deeply gutted that our public school can't meet the needs of all citizens. 

I'll be totally honest, I am scared to death, but most of all, outrageously hopeful about his future and at peace. Just a few weeks in, and we are both finding our new normal. He is finding a calm and happiness that had been gone for months. And because of that, so am I. And not to brag, but he's already first in class. This is not our Option A, but you better believe we are going to kick the shit out of our Option B.

Thursday, October 26, 2017

permanently figuring it out

Life. We figure it out as we go along. We always do. And we are always, always afraid we won't. (Always). We are so predictable, while life is anything but. Why don't we trust ourselves more? Why don't we trust our history of figuring out all the other things as we've gone along? I need to put a permanent post it on my mirror: "You are going to freak out. Stop it. You will figure it out. You always do."

Sunday morning had us watching back to back recorded episodes of the television show, This is Us. The character Randall, oh my word, Randall. He is my favorite. (also- they are all my favorite.) He is a big feeler, an over-thinker, a perseverator, basically, STOP LIVING MY LIFE Randall!!!

He and is wife are doing the paperwork to sign up to be Foster Parents and he was FREAKING. What if we get one with issues? How will we know what to do?" He asks deeply afraid.

And then they get assigned a child. With issues. And do you know what? Randall jumped in, floundering, and doing it. At first super imperfectly, and then just like Elton John playing a piano amazingly. (Chills). That's just the thing about parenting and life... you figure out what to do. That's how it's done, mainly because we have no other choice, and also because that's what we have been hard wired by God to do. And in between- we do it wrong. We learn what we are made of. We see where we are too much, and where we are not nearly enough. But we do it. And we figure it out because it's important and because it's worth it.

We find the string and untangle it until it starts to resemble life.

Once upon a time I thought when it came to changing the world, I also thought I could easily change our school district. The Special Education program desperately needs an overhaul complete with a reallocation of resources. Don't tell me all schools are just too poor and we don't have the money- we are RICH. I've been to budget meetings, and board meetings, and LCAP (Local Community Action Plan) and Superintendent Search meetings, and have read and researched every single thing I could get my hands on. I've seen several multi million dollars pools built. I've seen marketing budgets. 

And for the past two years, I've been trying so so so hard. This is not a teacher or specific school issue. This is a top down issue of culture and resources. 

I've never worked SO HARD at something, and seen such little change. I've never felt so misunderstood. It's worn on my heart. It's made me forget who I am, what I stand for. It's left me feeling scared about my boys' futures. So much so, that I've forgotten that world changing can apply to so many more aspects of our lives. So lately, I've tried to focus more on what is going right and the places that are doing it right. When you take a hard look at your life, you will always find things you and others are doing right. If you don't take that hard look though, if you don't on purpose pay attention to it, you will not even notice it. It's so important to stop and take time to notice the good, because the bad can be so loud and can really break us down.

Remember when Parker was in the hospital last May? Well, Valley Children's Hospital gave us the opportunity to tell that story on camera. Take a look, it will give you the chills. Boy do I love this kid and this place. This is a place that is doing capital L Life right.

And then we were invited to their annual fundraiser, The Harvest Ball. (I know- a ball?! I am Cinda-fricking-rella!)

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Michael and I en route! I wasn't a bit nervous, I was just so excited. It's times like that, where I know implicitly, that I am doing the very work of my soul. This is what I was born to do.

Valley Children's Hospital showed their guests this video, and I was able to share a few personal words with 900 of my closest friends.

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When it comes to autism, there are people and places doing it right. Let's talk about that more. Thank you so so much to the CEO of Valley Children's Hospital, Todd Suntrapak for creating such a magical place and for empowering the people who work with you to do incredible things like George's Pass (well done Nurse Shelly!!) This guy is authentic, and his heart and actions towards our community of children shows it daily.

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PS- Michael and I stayed out until 1 am. That hasn't happened since 1978. I just thought you should know.

The world is not perfect, and sometimes our greatest struggles are actually a calling to what we are meant to do with our life, and more importantly, who we are meant to BE. It's all so confusing, and all so crystal clear.

Life. We figure it out as we go along. Don't worry, we always do.

Thursday, October 12, 2017

God is in the details

I remember reading something on the details of prayer over a year ago. The overall message was that it's ok to pray for specific things. That God listens to the details. I always feel bad asking for help, yes, even from God, but I wanted to give it a try. We were going through an incredibly difficult time at Greyson's school, and I was lost without a map. I am not comfortable digging into that publicly, so I mostly kept it to myself, but I was left feeling especially empty, scared and alone. Writing helps me process, and this mess stayed in my brain unprocessed. I prayed to God for the strength I needed to advocate, I prayed he keep Greyson safe, and I prayed for signs.

God- I know you are here with me. But I need signs from you. I need to feel it. I'm not usually so bossy, but this is really something I need, God. I'm gutted and scared and lost and don't know what to do. Show me what to do- but please- BE OBVIOUS. I sometimes don't know if that voice in my head is you or control freak me. I need to feel you here, so please, send me a sign.

A couple of days later I received a text from my friend Jen. One of those friends you don't really get to see or talk to much, but love just the same in your heart. Jen's message was something along the lines of- I dropped something off for you. I hope it's ok. If you don't like it I totally understand. I got to my house and saw something on our front porch. It was a sign. Not a tiny one- a big huge ass sign.

My jaw dropped onto the ground and rolled out in front of me. A SIGN. AN ACTUAL SIGN. I got the chills all over and with tears in my eyes I looked up and said- You are here! THANK YOU!!! Of course you are right here, every day, all the time. And I asked for a sign and you and my friend Jen DELIVERED AN ACTUAL SIGN TO ME. And take a look at it, it's perfect.

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You can get your own HERE. Or follow her Instagram page HERE. This is not a paid advertisement. I only share things I love them.
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I held that sign and I remembered, I saw, I knew, I know. God is listening. All the time. To all our details.

Fast forward to the end of this past Summer (even typing that sentence makes me feel sad. Bye Summer, we still miss you. Please write.) While scrolling through Facebook, I see that one of my very favorite humans and best selling author, Jen Hatmaker, was starting a podcast. She was crowd surfing for design help for her podcast picture. I had never listened to any podcasts before, but I thought- this is something I could get in to. Jen is hilarious, deep, light, brave, and a brilliant author and speaker. She's written a jillion books (12) and many of them wound up on all the important lists. But most of all, she's a girl, with a big heart and a computer trying to connect with the world, and who can't relate to that?

A week later I saw another post about her podcast. You are supposed to be on her podcast- I suddenly felt. It wasn't a thinking thought, it was a feeling thought. WHAT?! My brain said, you are crazy. (Which I am and fully, mostly, kind of embrace). But I'm so often tearing myself down- not saying this thing is something you HAVE supposed to do. 
No, no, no- I am NOT supposed to be on her podcast, I told the thought. She is interviewing fancy famous people and I am neither- I am just me. And the thought finally shut up. But only until her next post. YOU ARE SUPPOSED TO BE ON JEN HATMAKER'S PODCAST, it said again.

Stop thinking that! I told me. You don't have anything to bring to this table.
Stop being so negative, I told that voice.
Yes you do, God has given you such a blessed story and perspective and two magical boys and it's your life work to share it. You know that- for when you write and share and connect- you feel alive. More alive than you've ever felt. You feel purpose. Please- reach out. Make this happen. Don't be afraid to want this.

And so I did want this. More than anything I had felt for awhile. The stress of dealing with school had beaten so much of my spirit and confidence and hope for the world out. But this day, I felt it coming back. So I wrote Jen. A pathetic, dumb- Hi, you don't know me but I need to be on your podcast type of note. (Cringe). But FINALLY that aching urge vanished. THERE. I did it, now you can leave me alone- I told the voice. And I felt at peace. For about 24 hours.

DO MORE. The voice said. And this time I only argued with it for a minute before giving in. I went to my Facebook page and asked for our facebook friends to help me reach Jen Hatmaker and ask her to have me as a guest on her show. And everyone sent her comments and messages and tweets and more. Except it turns out, it was the her birthday. And the day of her book launch. And the messages got overshadowed by those incredibly important events. But it was ok, because I tried. And if there is one thing I am a PRO at, it's trying and failing. AMAZING at really. But then a few days later, she put a request out on her Facebook page. She wanted people to recommend someone she could interview who had moxie in spades. I went back to my Facebook page and once again made the request. If you connect with my words, will you recommend me to be interviewed for the For The Love Podcast with Jen Hatmaker? And friends, you showed up. Did you ever show up like crazy. I read literally hundreds of comments from you recommending ME. I felt like I was watching my eulogy, and it was good and beautiful and kind, and I just don't really know if I've ever felt anything like it in my life. Social media is so weird, and so good. I prayed to God, Please, I do want this. Please make this connection. 

A few days later, I received a message that I was selected to be a guest. And my brain and heart exploded the instant I read it. When was the last time you almost fell over because you got incredibly amazing news? 

Recording the podcast was easy and fun and mentally draining, and of course, Jen is everything good and kind and hilarious that you would hope her to be. Yesterday was the launch of my episode, and I would love for you to listen if you haven't already. The whole thing was God and magic.

HERE is my episode: HOW TO SURVIVE WHEN YOUR DREAMS DISSOLVE WITH CHRISSY KELLY. In it I share some of my most sacred parenting moments, and some that were my absolute rock bottom. That's ok- rock bottom is needed before any rise. And risen we have! I am truly so proud of our story, and my boys, and you- for being a virtual village. God is good.

Proof we are living a good life...

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Fun at the Big Fresno Annual Fair

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When he flies, he's so free.

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Jen's website is HERE. And you HAVE to buy her book, Of Mess and Moxie:Wrangling Delight Out of This Wild and Glorious Life.

HERE is the transcript from the show, in addition to some autism resources I recommend.

Don't forget- details matter.  God is listening. All the time.

So much Love,

Friday, August 11, 2017

back to school 2018

I realized I had lost my moxie.

How did it disappear? Can I pinpoint the day? Was it all at once or little by little? I sit here and ache from it's loss, yet grateful for the shocking realization. It's been months since I last felt that spark of unbreakable spirit I know is somewhere inside my soul. Since I looked in my mirror and said- "yes, that's her, that is me" and felt at home. Maybe at least knowing it's gone, is key to getting it back.

Moxie- ˈmäksē force of character, determination, or nerve.

What builds it? There is no exact recipe, but I do know it's born from struggle and dirt and pain and triumph. You can't really get it from watching reality TV and retail therapying (DAMN.)

We are approaching the end of Summer. School starts in just three days. I think back to all the Back to Schools I experienced as a child. New Uniforms, back packs, and lunch boxes were purchased. My Strawberry Shortcake lunch box was one of my favorites. Unfortunately it didn't smell like strawberries, it smelled like cool metal, stale PB+J and orange peels. We would patiently await to find out if we were getting Teacher A, or Teacher B- there were always two options per grade in the St. Louis Missouri, Catholic Schools I was raised in. I would carry my new supplies- new pencils sharpened with pride, brand new beautiful crayons aching to color all inside a shiny new pencil box- so excited to start fresh each year. The night before school started I could never sleep I was so excited.

Some back to school- "Get to Know Me's" I made for the boys teachers, aides, and school staff. It's really scary to send your children into the world when they struggle to communicate. Anything you can do to ease that fear and make the transition smoother, the better.

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We don't model please or thank you, because those are hard words to learn for learners who struggle with language. Nouns like "banana" or "car" are easy- they are associated with something tangible. Words like "go" or "put" are a little harder- but still belong to concrete concepts. However- "please" is social, not functional, and isn't associated with something concrete. When Grey is frequently told, "please" and "thank you", or made to say it- he starts adding it to every word in every sentence. It took us a year to undo sentences like, "car please, is please, green please."

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Now I'm a mom to two precious, energetic amazing little boys. This is the first year that both boys will be going to school. Our school experience is not like the one I had growing up. Teachers and programs change up until the last minute. We don't go to our home school with kids from the neighborhood because they don't have an autism program.  It takes up so much of my energy- so much so that I can barely write sometimes. It's made me realize that stress eats creativity for breakfast, lunch and dinner. It's crushed so much of my confidence and my soul.

Those of you who are here with me, breaking bread in this sacred space know my heart. I just want what's right. Some of that is short term stuff, like best and current practices in education, appropriate training, open communication. I want my boys to have a method to communicate, and a method to be communicated with. For many kids with autism- pictures + words (not just words) is how to best communicate with them. I want individualized services and Inclusion that makes sense. I want a true collaboration- Teachers know a lot about teaching, and I know a lot about my child.

Lastly, yet perhaps most importantly, I want to big, systemic changes, not just for my boys but for all, and all over the world. You see, the day Greyson was diagnosed with autism-I finally realized that despite countless hours of Speech Therapy, and Behavior Therapy and diet changes and supplements, that I could not change his diagnosis. No matter what I did, I couldn't change the fact that he has autism. So I decided on that very day, "Well, I can't change the fact that Greyson has autism, so instead I will just have to change the world." And I totally thought it would be easy. Ha!

But my mother's heart aches to see a change in hearts and minds and culture showing that ALL students are capable, deserve support and deserve a great educational experience that will lead them to a life of well-being in our community. I want to shatter the implicit bias that individuals with disabilities are less than. I want to dissect the "Us vs Them" mentality of Special Education versus General Education. I want us all to belong to each other, like Mother Theresa said. I want for everyone to embrace that "Inclusion" can and should go beyond specific classroom curriculum and trickle into every breathing aspect of life.

But we just aren't there yet. And some days I'm pretty sure someone crumpled up the map to get us there and then threw it away.

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Well, yesterday, The amazing author Jen Hatmaker created a call to action on her Facebook page. She has a podcast, and was looking to the public to find a guest to interview. It's been something I felt like I HAD to do since the day she announced she would be hosting one. This gal has an enviable spirit, and charisma that pulls you in. She's everything good in the world, and she's the very definition of Moxie. I asked my Facebook friends if they would recommend me to be a podcast guest on her show too.

You guys, I was ABSOLUTELY overwhelmed with the response. It was like I got to hear my eulogy while I was still alive. Hundreds of likes and comments about me. I can barely take a compliment so it was awful and WONDERFUL. You guys said the greatest stuff on earth- about my mothering and advocacy and passion. I remembered for the first time in a long time who I was. It's one of the greatest gifts I've received, and absolutely a God thing. I was feeling at an all time low. It took you and your words to remind me who I am, because I had forgotten. I wasn't a pain in the ass, demanding, unreasonable mother.

I was and am a moxiefull Mother changing the world because it damn right NEEDS TO BE CHANGED. And if world changing was easy, everyone would do it. The truth is, I didn't pick this job for me. God tells me ALL THE TIME, with so many in my face reminders- Chrissy- this job was picked just for you. It will not be easy. However, it is worth it. Not just for your boys but for all whose world's will be changed by your words. There are amazing skills you already possess that you get to sharpen with this task- use those skills and feel alive. There are also skills you don't have now, but if you are open to learning- this will be your teacher.

And you know what? I'm here on earth to learn. Thank you for reminding me who I am and why I fight for what I fight for.

Some scenes from Summer...

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We were 92% water. You can call us cucumbers.

In July, my amazing sister Lisa and her family came from Missouri for a week to visit. It was the best thing ever.

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We love our cousins, Tristin, Levi and Maggie.

And I love my sister, it had been three long years since I had seen her. We are close in heart, but far in distance.

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We had SO much fun. My favorite part is that we got to do regular old life together. She came with me to Speech Therapy, and to where the boys do their Behavior Therapy. We worked out together and ate together and grocery shopped together, and even drank Titos and played Cards Against Humanity together. Like the real, unfancy, important stuff.  Life is so much more doable when you have family around to help carry the load, and do the fun stuff with too.

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One night when I was taking him to bed, Parker looked at me and said, "Maggie".

"You want Maggie in here with you?" I asked, mouth in an oval and eyebrows raised high in surprise. I couldn't believe he was willing and able to share his space after a full day of extroverting.

"Yes!" he said.

And I kid you not, they slept together every night after that. Oh sweet Jesus, my eyes have never seen such a thing. I almost can't speak of it, it was so magical. The first night I slept in there too, afraid Parker might wake up and decide he no longer wanted Maggie in there after all, or afraid he might pee on her! As we were lying in the dark that first night, foot cuddling and giggling (Maggie made sure to get Parker a stuffed animal to sleep with "so he doesn't get scared"), Maggie says to me in her little, perfect, high-pitched five year old voice. "Aunt Chrissy? You are such a wonderful mother to your boys." I couldn't breathe it hurt so good to hear.

While they were here, we all took a trip to Southern California, Hermosa Beach specifically. The place we used to call home before moving to the Central Valley.

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We were one with the beach and the sand and I was afraid I would wake up from this little dream of heaven.

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One morning we saw a pod of dolphins. (Thank you google for letting me know what a group of them was called). Four together, swimming majestically. The entire beach vibrated and I was afraid to blink or breathe- blinded by their beauty and grace. This is their ocean really, and we are so lucky they let us play in it. My friend- I wish you that same level of peace in your life that I felt while watching the dolphins.

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Greyson flaps with the rhythm of the sea, coming in and out with the tide. He has insight to nature and the world that we can't even see. One day when I get to heaven, I can't wait for God to tell me about them.

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From the moment we pulled onto Pacific Coast Highway and could feel the ocean pull, Parker asked for "blue house". Over and over, pointing right, (randomly I thought). "I want blue house!" he said more and more urgently. "Ok buddy- we will find you a blue house", I told him. I had no idea what he meant, until the moment we arrived on the sand. He saw the Lifeguard stand and starting running for it, joyfully exclaiming- "Blue house!!!!!" Little baby lightbulbs. They are always turning on.

My heart, my heart, my heart... Of course they are worth any battle. When you have spent your first 40-something years trying to get people to like you, it's hard to care more about doing the right thing, and getting the right thing done than caring if you like me. At any given moment there's a construction zone in my brain. Maybe I should wear a shirt that says, "Open During Construction. Please excuse the mess."

I've always been of the motto- Hey, let's make friends while we're at this life thing. And, If you are not having fun, you are doing it wrong. This life mottos of mine are not going so great for me at school. I'm learning though. It's my growth spot, and a struggle God has given me to grow. Sometimes I forget that. Sometimes I would like to return this gift like a too small sweater from the Mall.  Thanks so much, God but this struggle isn't exactly what I was looking for. Any other ones you got lying around big guy? 

Sometimes we must boldly look our struggle in the face and say, "Welcome. And thank you. What are you here to teach me?"

Have you lost your Moxie too? Join me in reading Jen Hatmaker's new book, Of Mess and Moxie: Wrangling Delight out of this Wild and Glorious Life. In it she says, "We will endure discouragement, heartbreak, failure, and suffering. All of us. And more than once. And in more than one category. And in more than one season. But we are the very same folks who can experience triumph, perseverance, joy and rebirth. More than once. And in more than one category. And in more than one season. And that? That is moxie."

(I'll give you a moment to feel your chills...)

I want you to look in the mirror and remember you and your moxie too. Moxie doesn't have to be big and sweeping. Sometimes it's just the small things we do, when even the small things feel impossible.

And in case you need this reminder like I often do...

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So much love,


Wednesday, July 12, 2017

All About AAC: why we finally dove in

It felt like giving up.

You learn early on in your autism battle that when fighting a dragon, you don't stop when you're tired. You stop when the dragon is tired. And one thing you never ever do- is give up.

I have two amazing boys with autism. Parker is 6 and Greyson is 8 years old. I immerse myself in their world and therapies daily. My empath personality lets me feel the smallest percentage of their struggle. Even that small part is unbearable at times. It's also that voice in my head that reminds me that I must do everything possible to help them navigate the world as independently as possible. 

When the autism portion of this life journey began, I was paralyzed by the future and the "what ifs" I feared would never come true. The biggest- What if they never call me mom? The thought took my breath away. I couldn't bear to hear other moms at the playground complain about hearing "Mom, mom, mom, mom, mom", all day long.

Just one time...if I could just hear it once, I would pray.

We did two one hour sessions of Speech Therapy during the period of Early intervention, which stopped on their third birthday. We then continued with one hour of private practice Speech each week to supplement what's given at school.

I thought about using Augmentative and Alternative Communication the presented as "AAC" by our ABA therapy program when my oldest was about 4 years old. I wasn't ready to give up on him speaking, so we decided not to really pursue it. After several more years, I thought about it again. My oldest was now 7 and had an additional diagnosis of apraxia in addition to autism. His intelligibility by unfamiliar listeners was about 10%. And I didn't see his language sky-rocketing anytime soon, when he couldn't even try words on for size. It would be like expecting him to learn how to ride a bike- without being able to use an actual bike to teach him.

So I decided then, about a year ago- that I would give up. I would give up on my hopes and dreams of him speaking and having conversations and telling me about his day. I felt like at the very least I was compromising with hope. By this time- at least he could say "mom"- it comes out as "mah". He can request preferred items and food- at least in ways I can translate for others. "Dit mies" are fries and "hah gog" is hot dog. I knew him in ways better than a mom might know a boy who could talk. I knew every sound, every look, every need he might have...or so I thought.

After an AAC Evaluation, our District recommended we use LAMP- Language Acquisition through Motor Planning. I watched every video and tutorial I could on it. I spent hours adding in custom pictures of people and preferred food and toys. I was able to use it to have conversations. But after a month's time- I just didn't like the app, and it just didn't seem like it was going to be able to take him where he needed to go language wise.

He spends 30 hours at school a week, and about 60 waking hours outside of school, so we needed to use a program I was completely sold on, and I wasn't sold on this one. I could go into the reasons I didn't like it- but the truth is- it's a great app, and lots of kids are successfully using it. It just wasn't a good fit for us.

Based on my son's strengths, (he is great at visual scanning, generalization of pictures, and sorting categories) I wanted to trial Proloquo to Go (P2G).

P2G is a symbol-supported communication app that promotes language development and grows communication skills, from beginning to advanced communicators, according to their website. I loved the easy to recognize symbols, the fact that a picture and a word can be put on the sentence strip (head start on reading for the win!), the way they categorized their icons and the fact I could change the grid size on every single page. I went against the District's recommendation and classroom roll out which was heavily focused on fringe words. After much research, I wanted to tackle AAC using a core word approach. I hired an outside Speech Therapist who specialized in AAC to help me customize a program for Greyson. I spent hours tailoring it to be clear and easy to understand and functional for my son's needs.

I started with the largest grid size we could (A few steps above his developmental level) and hid words and concepts (ie- pronouns beyond, I, you, my) as appropriate, to reveal as his language grew. We had a beautiful home screen that encased on core language. This is what his screen looks like today. In just 10 months we've been able to reveal a lot of new language.

From the beginning, I saw how P2G could not only help him communicate his needs of today, but it could also help him develop language. He was finally going to be able to learn to ride a bike- by actually using a bike! 

We focused modeling on core words. Core words make up most of what we say in typical conversation and writing. Many studies across different languages and age groups have found that about 50 words account for 40 to 50% of what we say, 100 words account for about 60%, and 200 to 400 words account for 80% of the words we use every day. (source)

Greyson already had a strong concept of highly motivating fringe words (nouns); his receptive language is great. Words like "fries", and "Lightning McQueen" and "cars" and "trains". But what was missing was an understanding of those harder to understand core words that are not associated with something tangible or "pictureable". Words like "get"," stop", "here", "watch", "can" and "come".  The understanding of those types of words is what will help him develop his language.

How do we get him to understand those words?

We modeled like crazy. We modeled and encouraged elicitation of a variety of communicative functions beyond requesting (commenting, asking questions, protesting, negating greeting/goodbyes). At the beginning we also honored all requests that were reasonable/doable. Ice cream at 9pm- sure! (A pony- not so much). But we did try to honor many of his initial independent requests so that he could understand the amazing power of communication!

We focused on a small group of core words at a time. (Training and core word classroom material found HERE.) Fringe words are highly motivating, and are the glue that helps contextualize what the core words mean.

More recently, I also got my own ipad, and using an app called Dropbox, I downloaded Greyson's specific language on my device. I use it to model what I believe Greyson would say based on his behavior or the setting, ("I don't want a banana", "Can I have chips?" "My Mom looks really young.") Ok, fine- I made up the last one but with a little Botox, it's possible. I also use it to speak for myself. Typical children learn to speak by hearing others using spoken language. AAC users learn to communicate by watching others use AAC.

I created some visuals to act as adult prompts. This way it was easier to remember which core words we were focusing on. I used velcro to attach each icon so they could easily be switched out. I also made a copy for his classroom.

And we made some base conversation starters to help adults model a variety of different ways. Each sheet was location specific. We did one for the kitchen, the front door, and the playroom too. I created specific ones for school based on function as well.

We model in the natural environment, as well as in more structured ones. I'm not afraid to make mistakes or change what I was about to say on the fly. We've started using P2G with my youngest son too. He does not have apraxia, but he does have autism and the language delays that often accompany the disorder.

HERE we are making banana bread.

HERE Greyson is using it to order ice cream

Here are some tips I've come up with that have been instrumental in helping us implement AAC. MLU- is a fancy term for Mean Length of Utterance. Basically- how many words do they use in a sentence. If a child only can label items- "ball", "bird", you don't want to model 5 word sentences. You would start with sentence 2-3 words. "Yellow ball." "I see bird."  

Now Greyson is beginning to use it independently. It turns out, I didn't actually always know what he wanted and needed. Now he can tell me when he is sad. He can tell me he actually wants to ride an escalator, instead of go get ice cream. He can tell me his teeth hurt. All of these are things he has expressed to me all on his own by using his device. It's remarkable to see how far he has come in such a short period of time. We still have a long way to go, but I'm confident with tons of modeling and classroom and ABA support, we can and will get there. 

He even negotiated with me when he didn't want to go bowling.

When I think of language, its like a ticker tape running at the bottom of a screen. As the words come in, we process and assign meaning. If need be, we respond. But with many children with autism- they need pictures to comprehend. For them, I picture language not like a ticker tape but like bubbles, and once they pop- it's impossible to remember and put them in the right order again. AAC gives my son the visual he needs to process and understand language- making it a little more permanent in his mind.

I can't imagine how it would feel to not be able to express yourself. Words heal, they connect, the build, they express, they validate, they request, they delight, they entertain, they express disgust and disdain...I can't tell you how much I love words, and the fact that my boys struggle with them pains me completely. They need to be able to use words to do all those things too. I must teach them.
I can't forget to mention- my son's expressive (spoken) language attempts have doubled since using the device. And he's FINALLY using a handful of verbs beyond, "I want x". All the data says a child's expressive language increases by using a Speech Generating Device- but to actually see it and hear it in our home blows my mind. My only regret is that we didn't start this sooner. 

Other AAC resources:

Praactical AAC

Proloquo 2 Go 

ASHA Position Statement on AAC for SLPs

ASHA Technical Report for SLPs on AAC

Article: Don't Demand Prerequisites-( PECS use before AAC is NOT required).

This is the brand of case we use.