Monday, October 17, 2016

That Parent

I'm not exactly sure how I first found out about her

She was called "that parent" and I knew I definitely did not want to be her. She was first mentioned in our intensive Early Intervention program for autism. I felt like a reluctant passenger being driven in a car. I had no idea where we were going. I would just get in and grip the door with white knuckles and hold on tight, while my heart pounded in my ears. I kept my eyes closed and prayed for the moment we arrived to wherever the hell it was we were going. I was a scared momma to a precious 2 year old boy who didn't talk, and clutching another newborn baby boy.

Hearing and language evaluation assessments? OK. Psych evaluation? Are you sure? OK. Stop doing this, start doing that immediately- check and check! Vineland and ADOS, CARS2, and one trillion other assessments and evaluations- OK. They were driving us wherever they said we needed to go, and we believed them because they were the experts.

We would finish our day, go into our home, and peel off all our labels. We would watch TV and play in the back yard and do bath time like we were a regular old family. 

Because we were. I just didn't know that 'regular' could look like this at the time. 

And then I started to learn and pay attention. I realized I didn't need to go everywhere this car was driving us. So instead I would white knuckle grip my own steering wheel, instead of the passenger door handle of life. I became educated on things like autism, developmental delays, sensory processing disorder, severe language disorders, behavior, auditory processing, communication, motor planning disorders and executive function. 

I was no expert on any of these topics, not even close, however, I was an expert on Greyson. The only one in the world, in fact, and my input mattered. 

There was no Special Needs Parent school, so I created my own crappy version, by reading and researching, interviewing professionals and parents, trying and quitting a million new things. It's crappy because it never fully prepares you for everything because the game and the rules are always changing. And you can't graduate from this school- you just keep learning, because what you need to know constantly changes as does your child and your environment.

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Since then, I've been extremely involved in the education of my two little boys, now both with autism, 7 and 5 years old. I micro-parent. Oftentimes, it was while wearing a permanent apology- like I wasn't entitled to do this and be this. Like I was bothering people by asking, discussing, listening, requesting, suggesting. Always with kindness, absolute respect, trust, and an invitation to open communication and collaboration. 

Last year numerous factors in my oldest son, Greyson's classroom were off, and my gut would not let it go. The prior year I heard abuse coming from that classroom. Abuse that haunts my husband and I to this very day. My gut would wake me in the middle of the night and ask me questions I didn't know the answers to. What is going on in that room? The more I sought information, the more evidence I gathered, the more obvious it became that things weren't right. Greyson's behavior began to change. He was losing language and screaming intensely when frustrated. He wasn't meeting his IEP goals, yet there was no data provided to be able to explain why. When his teacher described him, it was clear she didn't know Greyson; his strengths or his weaknesses. I didn't receive a single Progress Report all year, a Special Education report card equivalent.

Questions I had were met with complaints, defensiveness and eye rolls that made my face burn. My son was coming home with crayon scribbled papers as proof of his daily work. Email requests to observe Speech Therapy were ignored. So I scheduled an observation in person. It was cancelled, as well as the subsequent one I scheduled after that. The Speech Therapist told me my son repeatedly throws his body on the floor when it's time to leave Speech, and he's probably going home with his legs covered in bruises. 

But no- I can't observe...And no, I can't bring our home behavior therapists to observe and collaborate ways on keeping my son safe. I would constantly wake in the middle of the night in fear or in anger. Tears forming a permanant path from the corner of my eye, down to my pillow. We requested school records, as is every parents right. There was no Speech service log, notes, data, or information provided. 

I was told by someone in the District that the SLP didn't really do therapy or take data. Finally his outbursts in leaving Speech (usually a highly NON preferred activity) made sense. I let the school know that Greyson would NOT be receiving Speech Services until I was allowed to observe. This woman began harassing me outside of school- attempting to make sure I kept my mouth shut on this topic. 

I'm no longer afraid of telling the truth. 

It was a hellish year. A year filled with too much regression and too many tears. It brought me to the realization that I am absolutely "that parent" and I always will be. My son deserves it.  And I have to make sure he is getting what he needs, more than I have to make sure people like me. 

As a wise person in the school told me once when I offered excuses for requesting information, Stop- you do not need to apologize for being a good parent. They are so right. There is absolutely no reason to apologize for being "that parent". She is respectful, and she trusts you until you give her reason not to. She loves her child more than words and fear and hope combined. She educates herself on the matters affecting her child. She communicates, offers advice, asks for your input, listens, collaborates. If you are doing the right thing, she is your greatest classroom asset. If you are doing the wrong thing- she will figure it out. You should just change fields now if you hate your job.

Many Special Education programs are broken or outdated. They lack a solid foundation to build on. My son's school is no exception. And the sad fact is, excellence isn't always rewarded, and incompetence, negligence and apathy isn't always punished. No matter how amazing of a house you are trying to build- it can not exist on cracked foundation.

However, there are some amazing individuals within these broken districts working their tails off for our children within our schools. I will continue to work with those tireless, passionate Special Education teachers, therapists, and professionals so they know they do not have to do this job alone. I can't imagine the struggles they encounter every single day. We are forever indebted to the love and sacrifice you pour into our children. The work you pour into our kiddos pays off in dividends, long after you are done working with them. And we keep your name alive in our house. Remember Miss Mary, Grey? Man, wasn't she was the greatest?

As long as I am Greyson and Parker's Mom, its my job to work with the school to make these programs better for all children. I have a ground level view, and I can offer a lot of insight. Right now, we still have a lot of work to do. 

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Over the past five years I've realized, I am "that parent", and you know what? She's really not so bad at all. In fact, I am damn proud to be her. 

Wednesday, October 12, 2016

The Magic of Temple Grandin

The minute she walked out, my throat got tight and I started to cry a silent, tear down your cheek kind of cry. My throat tightens as I type these words and remember the feeling all over again. I didn't hear a sound in the crowded room except for the beating of my heart and my exhales. I felt every single emotion from diagnosis until now, rising up like a bubbling volcano. The feelings were bigger than understanding or hope or even fear. It was a feeling of awe and God and white twinkle lights and purpose.

On this day, I felt my life in its enormity, and it was complete and on purpose.

Last month I had the opportunity to watch Temple Grandin share her message about the autism and "differently-abled brains" with a packed house of people starving for her important perspective. 

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For those who are not familiar with this legendary woman, she is one of the most well known adults with autism. She has been selected by Time magazine as one of the "100 Most Influential People in the World”.  Dr. Grandin presently works as a Professor of Animal Science at Colorado State University and speaks around the world on both autism and cattle handling.  For those of you that have not had the opportunity to hear her speak, I highly recommend you see her live, so you can feel her presence and see her beauty. You can find upcoming tour dates HERE. But in case those stars never line up for you, I want to share some of her wisdom with you here. She said so many things that were mind blowing, and I really couldn't write fast enough. Here are some of my favorite take away messages that I want to share with you.

Focus on Their Strengths
"Parents get so worried about the deficits that they don't build up the strengths, but those skills could turn into a job," says Grandin, who addresses scientific advances in understanding autism in her book, "The Autistic Brain: Thinking Across the Spectrum." "These kids often have uneven skills. We need to be a lot more flexible about things. Don't hold these math geniuses back. You're going to have to give them special ed in reading because that tends to be the pattern, but let them go ahead in math."

It took me patience and time to realize the strengths my boys possess. At first I was looking for Rainman savant like qualities. Will they be able to draw the New York skyline? Will they be able to take apart and rebuild a car? To answer that, no and no. But they each have their own amazing gifts. My youngest, Parker is hyperlexic- he has a precocious ability to read. He is able to process sensory information. He likes to be around people. His imagination and ability to entertain himself through play is remarkable. 

And my Greyson is extremely resourceful when attempting to put something together, or solve a problem. He's great at sorting categories, understanding receptive language, and discriminating the world through pictures. 

So like Grandin suggests, we focus on where they excel, and build on that. 

Expose Them to the World 
Get your children out of the house and provide choices of stretching activities, says Grandin, and shares that the worst thing you can do with a young autistic child is nothing. "Children in my generation when they were teenagers they had jobs and learned how to work. I cleaned horse stalls," she said. "When I was 8 years old, my mother made me be a party hostess - shake hands, take coats. In the 1950s, social skills were taught in a much more rigid way so kids who were mildly autistic were forced to learn them. It hurts the autistic much more than it does the normal kids to not have these skills formally taught." Grandin's mother exposed her to a vast array of life experiences. How will a child know they love machines or horses or art unless they are exposed to it? She urges parents to limit technology to an hour a day, and instead get out of the house and experience the world.

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And it's HARD, trust me, I know it's so hard to rip ourselves and our children from our zone of comfort. To weather that birthday party, trip to the park, or start of a new hobby- but it's IMPORTANT. We can show them by example that we can be scared- but do it anyway. Don't let other people's stares keep you inside the house. If you are scared your child will elope- enlist the help of friends or family and get out of the house.

Don't Get Hung Up on a Label
"One of the problems today is for a kid to get any special services in school, they have to have a label. The problem with autism is you've got a spectrum that goes from Einstein down to someone with no language," said Grandin, who has a form of high-functioning autism known as Asperger's syndrome. "Steve Jobs was probably mildly on the autistic spectrum. Basically, you've probably known people who were geeky and socially awkward but very smart. When does geeks and nerds become autism? That's a gray area. Half the people in Silicon Valley probably have autism."  One thing I didn't know about Grandin, she is HILARIOUS. She had the room rolling in laughter numerous times.

The label only means something bad if you define it that way. Who cares what anyone else thinks?

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Some other practical advice from Grandin: slow down, give autistic people time to respond, any task that requires a sequence needs a schedule or a check list. She said that one NUMEROUS times throughout the presentation, Don't load working memory- we have none. You've got to write it down! Play lots of games that involve turn taking. Children’s board games, such as Candyland, are good for teaching turn taking. When a child gets older, use board games that are suitable for an older child.

Temple Grandin gives parents like me hope. Hope that it all is possible. She reminds me that it's important to enjoy this one sweet life we've been given.

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(scenes from the Fresno Fair last weekend)

I walked away from the evening remembering, even if something we hope for doesn't happen- we will still be OK.  I left filled with hope that the incredibly hard work we all put in means something and pays dividends for years. And Grandin provided a feeling of peace, truly for just a moment reminding me that we ALL are wonderfully and purposefully made.


A special THANK YOU to California Autism Center and Learning Group for making this event possible! And whether or not you have a child with autism, there is something for everyone in Temple Grandin's many books

Tuesday, September 13, 2016

The Beauty of Same and Different

Today I had the honor of reading a very special story to a bunch of wiggly, curious, diverse, brilliant and open minded second graders. Greyson spends a small amount of time in this classroom each day, and I wanted to start an open and honest dialogue with these kiddos.

Second grade is still so young, but not too young to notice differences. I thought long and hard and for weeks about how I could talk to them honestly, without feeling like I was betraying or disgracing Grey. I debated if I should even do it at all. I put myself in my second grade mind- How would I feel listening to this story? How would I feel if the story was being told about me? I thought and I thought and I thought until my eyes crossed and my mind grew dizzy. I bought different books on explaining autism and differences and thought about reading those. They were all so indirect and just didn't feel like me or Grey at all.

And then one Saturday morning I woke up and I wrote. And I wrote and wrote and then wrote some more. I couldn't stop. I was in my pajamas until 1pm, in my bed- writing and creating and thinking and feeling. And on that day the story I am about to share with you was born.

I started by sharing some objects with the kids.

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"Can you tell how these objects are the same?" I asked them. They all starting yelling out answers and the room began to vibrate. FRUIT! The chorus sang. "Now who can tell me how they are different by a show of hands?" (I realized quickly I had to say that last part, otherwise everyone exploded into an answer all at once.)

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"How about these items?" I asked, again looking for same and different.

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"Now these items may be a little trickier", I told them. "How are these items different?"

"Well one is a decoration and one is a piece of fruit", a child answered. "How are these same?" I asked, wondering if this would stump them. They had the GREATEST of answers: They both have a sticker on them (which they do. The yellow owl has one on the bottom.) They both cost money. Yes, yes, yes!!! I squealed, so excited that they were coming up with answers I hadn't even thought about. "They are both smooth", I added.

I told them I had a very special book to share with them, one that also talks about same and different. I prayed I wouldn't curse or do or say anything inappropriate and I began...

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It's hard to describe how I felt reading the book. Some mixture of profound sadness, and absolute elation and joy and love and acceptance. "Does Greyson really learn how to talk better when we talk to him?" One little boy with bright eyes asked. "Absolutely," I told him. His eyes lit up even brighter. A precious little girl walked up to me afterwards. "I really like your book." She told me. And then she hugged me and said, "I love you." Oh you guys- I melted, and then froze because I didn't know what to do. Do I say I love you back? Will I get arrested? It was like I was looking down at a little me at that age who just wanted to love. 

"I love you too." I told her. Because I realized instantly, I'd rather get arrested than hurt her feelings. And I really did love her. And I love you dear friend, reading this too. 

And gosh, I love second graders. A place where someone who has autism really isn't different at all. When the world hasn't yet told you the dumb, made up rules like- You aren't allowed to tell people you don't really know that you love them. I think that rule needs to be tossed out. These kids are so smart, and it's so easy for them to figure out how we are different AND how we are all the same too. It really made me realize that grown ups are the ones who get stuck on the different and lose touch with the same part. 

Turns out those little nuggets weren't the only ones who learned today. I'm so grateful for all the lessons they taught me, important ones that I will carry with me for always.

Thursday, September 1, 2016

the return to innocence

Growing up, by the end of the week mom was usually done cooking. By Thursday or Friday night- our dinner was a compilation of left-overs from the week. What's for dinner? I would ask expectantly, knowing that 92% of her responses made me groan in disgust.  But "left overs" would garner the BIGGEST of groans. First of all- Sorry Mom. Second of all-I'm sorry to you, dear friend reading, in advance. Left over brain particles is all I got in me tonight. They are right next to some chimichangas. But it's been too long, and I miss you.

The past three weeks have been a blur. I'm busy all day long, doing I have no idea what for 3-60 minutes at a time, with not really much to show for it at the end of the day. We are just starting to- (dare I say)- get kinda, sorta adjusted to school. The feelings are coming back into our limbs. I've hinted at it before, and without saying too much- last school year was extremely distressing for both Greyson and our whole family. I believe the proper term is it "sucked monkey balls." There's a lot of pain and fear I still carry in my neck and shoulders that can only disappear with time and with trust and with lots of exhales. (Big ones). Try it now- exhale the monkey ball stuff in your life out. Whhhhheeeeeeewwwwww. I love it when you play along.

The Law of Conservation of Energy states, "Energy can neither be created nor destroyed; rather, it transforms from one form to another. For instance, chemical energy can be converted to kinetic energy in the explosion of a stick of dynamite. A consequence of the law of conservation of energy is that a perpetual motion machine of the first kind cannot exist."

It's so true with our hearts and our precious and finite human energy too. When we were in the thick of it last year- I just couldn't write. I couldn't write about what was going on, and it's all I thought about. How could I write about anything else? I felt like a fraud and the well where I dip into for creativity- it was empty. All that energy went into fighting and tears and pleading to God at night for help. I would wake up numerous times a week at 3am with my hands shaking in fear or in rage. I think there is a permanent indention from the corner of my eye down the side of my face where my tears dropped onto my pillow. I took on so many roles that ripped me from any zone of comfort, and it was hard. I can say I was true to myself and my character the entire time. To me- nothing is more important than my word, and that's still the case. I can say I fought with love. I can say, without a doubt- I did what was right for Grey. I can also say- in the process- we met so many good humans with gorgeous character who tell the truth and do the right thing too. I like to say, if a cloud doesn't have a silver lining- then sew one in baby.

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But it's over. We are all ok now. I'm letting go of last year's pain because it is no longer meant for me to carry. And the landscape has changed. We gotta gem of a new Teacher, and we began the year with the full intention of embracing it as a brand new beginning. Because it is. And all that monkey ballness has made me stronger. I don't feel it yet- I still feel a little timid and shell-shocked. But I know I'm stronger in my bones. Strong doesn't mean fearless. It doesn't mean you know everything. It doesn't mean you aren't scared. It just means- I've been through some shit and I'm still alive. And tomorrow I'm willing to wake up and take on whatever comes my way too. I'm ready to let go. I'm ready to hope.

Today I was driving and and old song from 1994 came on. Enigma- The Return of Innocence. And I realized I felt like me for the first time in a real long time. I rolled down the windows for the first time in a long time too- and while the wind whipped at my hair I just felt.

Don't be afraid to be weak
Don't be too proud to be strong
Just look into your heart my friend
That will be the return to yourself
The return to innocence.

And I listen to it now as I type. And I'm certain the lyrics were supposed to find me today. Maybe they are supposed to find you too...

If you want, then start to laugh
If you must, then start to cry
Be yourself don't hide
Just believe in destiny.

And when the chanting started, I started to cry. Because it made me feel soooo much. Soooooo soooo much. Because my boys have a severe language delay- and the chanting reminded me that you don't even have to say words to make people feel so much that they can hardly breathe it's so good.

I'll leave you with our 'Back to School' picture, and some words...

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Our pic doesn't look like anyone else's because our life doesn't look like anyone else's. Some days that's hard, but most days, it makes me really grateful. This has been our ritual for the past year. We get to school early so we can get one of the Special Ed parking spots, and it gives us both time to unwind and start school off feeling calm. Grey grabs his delicious homemade and organic breakfast (fine- it's actually a frozen waffle or cereal in a red solo cup(!)), juice, and his favorite cars of the day, and we tailgate. A beerless, footballess version of course. We just sit and watch the cars drive through, and watch the kids on the playground play. I drink coffee and get in trouble when I try to smooth down his wonky bed head hair. It makes me think of the quote in the movie, Up. Russell, the tiny mailman says, "That might sound boring, but I think the boring stuff is the stuff I remember the most.”
And for us, this is absolutely true. The boring stuff is our favorite.


Thursday, August 11, 2016

Little Light Bulbs

We turn Summer over to shake out the very last, most precious golden drops of it. The circle of life makes us dizzy at times. We are born and we die. We Summer and we 'Back to School'. We "it's so fricking hot," and, "I'm over the cold." And each season and milestone and moment shocks us; we can't believe it's already here. This ride goes so fast, sometimes it's hard to pay attention to the view.

So we are left somewhere in the middle. The center of annoyance and obligation and purpose and carpe dieming. Hello World, so glad to meet you.

We took a trip back to our old home of Hermosa Beach in Southern California. Because it is Summer and we could, so we needed to. My heart truly aches to say goodbye to Summer. Goodbye to our boys' therapy aids and our routine. Goodbye to Grey eating lunch at home with me every single day. Goodbye to pool baths and staying up too late. Last school year was just awful, like a bad Lifetime made for TV movie, and I just wasn't ready to even begin to think about sending him back again. I hoped the ocean's tide could infuse me with the strength I would need to make it through this year.

There were only three things on our agenda:

1. Visit with my friend Wendy

2. Go to the beach and Pier

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3. Swim in the hotel pool.

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The boys would be ok if we never left the hotel. Between the hot tub and pool, the elevator, and a big machines that only makes ice- what more is there to want from the world?

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We are finally at a place where we can travel and stay a couple of nights in a hotel with the boys. For so long it was impossible. Not impossible- hard- literally not possible. And the few times we've done it, I'm pretty sure we've had hotel management called on us every time.

This time was a dream. Perfection. Pinch me.

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Grey was most comfortable keeping his distance from the water. He loves the sand, but he's been scared of the water ever since last year when we took him to Surfer's Healing- and just kind of threw him on a surf board without giving him any warning.

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I wanted him to love the ocean again so SO bad. I wanted to yell at him, "LOVE THE WATER DAMNIT!!!!! RIGHT NOW!!! " My heart ached for us to love the same thing at the same time.

Instead, I made him put his toes in every so often while he screamed at me, and I would then let him go back to solitude and sand.

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Parker, on the other hand, could live outside. Anywhere and everywhere outside all the time. And if water is involved? Yes please!

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And he and the Ocean are the very best of friends. He would squeal and roll in the waves and cover every centimeter of himself in sand.

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Grey enjoyed the Ocean from afar.

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And we all enjoyed walking around the pier until the sun set deep, deep, deep into the Ocean and it was night. 

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The pier walkway sparkled like diamonds with white twinkle lights overhead. Holy cow beautiful.

By day two, my ache had gone away. So what he didn't like the Ocean? Maybe one day he will again. And he's so happy in the sand- I will just be happy that he's happy, I decided, and this time- I actually meant it. Not to mention- feeling sad that Grey didn't like the Ocean did not allow me to focus on how happy I was that Parker did.

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And that truly makes me happy. I played my heart out with Parker. The water was warm and we were sandy and soaking wet, and most of all happy. And while Michael was taking a couple of pictures of Parker and me, I suddenly saw something out of the corner of my eye...

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I was in shock. I couldn't believe it. I was dying laughing when I saw this picture and my expression.

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Here was my Grey, playing tag with the Ocean. All on his own. Squealing and flapping in delight.

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As time went on, he got braver and bolder.

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And then he just got on in there. It was the best day ever. It still kind of feels like a dream. Little Lights bulbs, that's what I call these moments. Those tiny little moments when something small just finally clicks. When I learned it was autism, I wanted that one big fix, one big switch I could flip on- to cure them, or fix it or make it stop. But there is no such thing. 

Instead what we have is Little Light Bulbs. And although they are not the biggest or brightest of all lights, together, they will light our way. 

And on the way home I realized- together we will make it through this back to school transition and the upcoming school year. We can and we will make it through anything life has to offer us. Grey is invincible. And maybe, just maybe- so am I. And something tells me if these words have found you- 



Tuesday, August 2, 2016

Tips We Use to Transition Back to School

Going back to school can be extra stressful for children with an autism spectrum disorder (ASD). People with ASD often have greater difficulty with transitions. This may be due to a greater need for predictability and routine, challenges in understanding what is coming next, or difficulty when a pattern of behavior is disrupted. 

Transition strategies can reduce anxiety, increase appropriate behavior and help students participate successfully in their school environment by making a more gradual entrance. Here are some things we do to help with the back to school transition. 

1. Spend time at School

A couple of weeks before school starts, we go to visit, hang out on campus and discuss the upcoming change. 

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We talk about the end of Summer and the beginning of a new school year. If the school has a playground, that's a perfect non threatening environment for your child to acclimate to the space again. Some Teachers are available and open to a meet and greet, where you and your child can come visit the classroom and meet the teacher before school begins to take some pressure off the first day. 

2. Visual Supports

There are several research based, visual strategies that are used to support individuals with ASD in preparation for a transition. One of our favorite ways to prepare for the unexpected is by using Social Stories. This tool is a great way to identify a concern and develop a story that supports the desired outcome. The stories are written from a child's perspective using language that is appropriate for that child's development. 

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I write in the Third person because Greyson is not yet familiar with pronouns like me, my and I.

Your story should address any specific strengths and deficits your child may encounter during the school day, while always creating a positive outcome. For example, if your child has difficulty eating lunch in the cafeteria due to the volume, you can remind them of self regulation strategies that have been successful in the past. 

A page in your story might say, "Tommy does not like the loud noises at lunch. If it's too loud, he can cover his ears, or ask Teacher for his head phones to wear so that he can eat lunch comfortably with his friends. If the noise is still too much, Tommy can ask to finish eating outside." Be sure and address any of your child's concerns, whether it be sensory, social, transitioning etc. 

Greyson really looks forward to school recess, so our story will remind him of that preferred activity.  "After lunch, Greyson has so much fun playing on the playground and climbing the monkey bars." 

Social Stories are great visual strategy to help a child organize and interpret events, know what to expect, as well as develop a better ability to self regulate. Reading the story nightly for a few weeks before school begins can help alleviate some of the anxiety associated with the upcoming change.

3. Dress Rehearsal

There's nothing worse than stiff, brand new shoes or a scratchy shirt tag. But to a child with autism and sensory issues, these things have the potential to ruin their day and seriously impede their ability to learn and adjust. 

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Break in new shoes and clothing before school begins. If you can, have your child use and wear these items for a few weeks before their first day. Depending on how much routine your child needs, you may want to use a new lunchbox or back pack several times leading up to the start of school. 

4. Communication Notebook 

Part of building a good relationship between school and family is communication. I know this tool helps put my Mommy transition anxiety at ease, and it also helps to set your child up for success. A frequently used writing tool for home-to-school communication is a notebook the child carries home daily. 

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This is our notebook from last year. I put a picture of Greyson and share some information about him for the Teacher and aids. You can also put your contact information and email on the inside cover so the Teacher has quick access. 

The most successful models contain a two way exchange of information. Just as we desire to know what our child is doing at school, the teachers desire to know if there is any information about your child that may affect them at school. Perhaps your son has been crying frequently, or your daughter woke up at 4am and hasn't gone back to bed. Those are the types of things important for a teacher to know. Make sure your child's teacher is willing and able to contribute to this method of communication, and be sure and let them know what kind of information, and the frequency you are looking for. Each parent is so different and their request for information (ie child's behaviors, activities or therapies worked on, Speech notes, lunch eaten, mood etc.) is unique. Your child's Teacher may already have a form they use for meaningful daily communication.

Establishing a trusting relationship is critical, especially when working through challenges that may occur during the school year. Healthy communication is key to this important relationship.


Despite all the planning and execution, it often takes a few weeks for both students, Teachers and parents to fall into a working routine, so be prepared for a few kinks along the way. As a mother, I know how hard it is to let your child out into the world. Especially if they don't have the verbal ability to tell you about their day. 

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But sometimes we must simply let go, and let them share their awesomeness with the rest of the world.

Thursday, July 28, 2016

power of choice

It's too hot to cook. Or write. Or actually even think properly. At least that's what I'm blaming my perpetual brain fog on this week. I'm not complaining, because I'd rather be hot than cold any day of the year- not that we have a choice on that one. But I'm also not super motivated to do much besides read, take a nap, sweat and eat. I'm wearing-too short for a 42 year old- jean shorts and a tank as my uniform. 

The boys have been completely unaffected by the heat. As in-out the back door at 8am and ready to play alllll daaaaay looooong. They can swim in ice cold April swimming pools, and run around in 108 degrees heat. What gives? I miss the flexibility that childhood brings. And the willingness to overcome any physical discomfort in the sake of play. 

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Parker only rides his bike now. From room to room in the house. Outside to inside. He had my put it in his bed. He tried to bring it in the car. It's as if he can't exist without it, so I let him be who he needs to be right now. This phase will pass, and a new one will replace it. And luckily this one- is pretty darn cute.

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One day, when I'm in Heaven, I will finally be able to see the world as they do. And I will cry it is so beautiful. 

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An excerpt from my book, Little Light Bulbs (Daily). After two years, I'm only about three chapters in. I plan on writing more when both boys are in school full time. 

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The pool is where we spend most of our free time.

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He swims under water now. Like face in. He dives to the bottom for toys. He swims on his back. After so much struggle, I still can't believe my eyes are telling the truth.

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Thank you, God. It happened in your (not mine) time. Never mine. And it's perfect.

I'm so over the constant flow of politics on TV and social media. It reminds me of the old comedian, Henny Youngman's joke: The patient says, "Doctor, it hurts when I do this." And the Doctor says, "Then don't do that." I really just need to quit the internet for awhile, but instead I keep subjecting myself to the awfulness.

Bascially, I have dietary restrictions- I am inspiration powered and on a constant Inspiration Diet. And when I ingest too much turmoil in the world, and pain and contradiction and and hatred, and murder- I shut down. I turn myself inside out to protect my skin. But then my insides get hurt and I just can't win. I need to limit the time I spend investing in things that make me feel bad. Like reading comments people leave on Facebook with my jaw dropped down and rolled out onto the floor in front of me. I start to think that is reality- but it isn't. At least it isn't mine. 

We have choices. We always have choices. And if something causes you pain, choose something else.

When we go to McDonalds, we give the boys an option of ice cream or fries. Greyson always picks fries, and Parker always picks ice cream. Until lately, when Greyson started telling me, "One...two" when I asked.  
"Do you want fries?" 
"No," he says, "one-two."
"Ice cream?" I counter. 
"No, one-two".
"Fries AND icecream?" I say.
"No, one- two" he responds.

I soon realized- he wants both, but he doesn't know the word and. He thinks that one or the other is the only option he ever has in life. He's so used to only being given one choice all day long- in therapy and in life. "Is it red or blue? Do you want water or juice? Under or over? A or B? Chocolate or vanilla?" 

Greyson has no idea of the power of AND. Oh, the gorgeous and enlightening power of and. We can be serious AND silly. We can be Rebulicanny and Democrat-ish. Sad and happy, empty and complete, confident and insecure, all swirled into one. Powerful and weak. So often we think we are limited by simply one or the other, when we can actually have both. Life is like a multiple choice test, and sometimes, all the answers can be correct. 

And now, sometimes Grey gets both, to show him how good and is. I can't wait to teach my boys that they have options, and so often- most importantly- more options than the ones that they are given. We are only limited by the choices we make, not the choices we are given. And we can almost always choose an and.