Autism Awareness Month. Day 6 2016. F is for Food.

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Day6

F is for Food

This breakfast is 8 years in the making…A2 eats a total of 9 different foods..all presented in a certain way…all brand specific. Starting from 0. He has worked so hard to get to this point and I feel a weird balance of pride, frustration and futility when I see this plate. Feeding issues in autism are common and are outside of “oh, all kids can be picky eaters” or “just tell him if he doesn’t eat dinner, he won’t get anything later–it’s not like he’ll let himself starve”. Because actually….he will. Many children with autism have serious food aversions and feeding issues. The reasons are varied but tend to be due to sensory, texture, medical or obsessive-compulsive issues. Behavioral issues become deeply ingrained in these kiddos when eating is paired with physical pain due to gut issues so common in kids with autistic disorders and can…

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Now I lay me down to sleep….

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4:17am

My beautiful boy wandered into my room tonight.  His curly hair tousled around his cherub cheeks, pajama bottoms twisted in a spiral around his hips from tossing and turning…he marches in quickly as if he had somewhere important to be and then suddenly stops at the foot of my bed with purpose.  He rubs his dazed eyes all the while smiling that big Cheshire Cat grin of his. “Hug”, he says as he makes that long trip to the other side of my California king.   I can’t say I hate it when that happens.  He is warm and cuddly and doesn’t thrash and kick like he used to when he was little.  To the best of my knowledge, A2 has never slept a full night in his life and no one can tell me why.   As he gets older, he seems no worse for the wear for it either.  The stretches between night time explorations have become longer and my husband and I have become a tag team settling into separate sleeping arrangements at night over the years to ensure at least one of us wakes to the new day refreshed.   He tells me “scootch magooch” as he encroaches on the sliver of bed where I sleep and drifts off as swiftly as he made his declaration of his sleep intentions.

The thing is, my husband and I never wake up fully refreshed.  There are Things That Keep Me Up at Night. Who will hug him when we are gone?  Who else will find his sweet smile so endearing even at 3:00am?  We try to be optimistic about his future.  A2 will likely never be able to live independently, but dammit, we bought him a house and we rent it out to people today so in 15 years he will have a place to live….maybe even with 24 hour support staff and 2 or 3 other guys who are sweet spirited sports and music fans like he is.  We live in an expensive school district despite struggling to afford it to make sure he has the best education and connections for his future.   Though we are socially isolated as a family because such is the nature of autism, I remain involved with my religious congregation so he is never alone. SOMEONE will always know and recognize him.  I advocate and I write and I stay present in the disability community so he will always have that community too when it comes time for some else to step in as a guardian when I can no longer do it. A touchpoint for that kind stranger to get guidance or direction. We save the best we can.   We plan for the best possible services and outcomes to give him a meaningful life worth living. We are uncertain what services  will help house him, feed him, care for him.  We can’t be sure that there will be vocational training or health insurance or social security disability payments. All of which is unnerving when you know there will be no one to love him or snuggle with him or wipe away tears.  So we plan as best we can knowing surely, there will be some kind of services for him.

But tonight there is no sleep because now I am not so sure.  I know in the morning light I will look at everyone with a suspicious eye and wonder who around me willingly voted for another reason to keep me up at night. Half the population wanted political change and they got it and whether the overt intentions were there or not, they were willing to make children like my child the sacrificial lamb.  My child will always be dependent on others to be his voice, to protect him….his rights, his body, his dignity . My child and others like him often have no option but to live in poverty and have no political influence as adults.  I am terrified for him because no matter how much we plan, no matter how much we go without today, if it is acceptable for the leader of our country to marginalize him, make fun of him, call him the R word what does that say for the people around us who brush that off and traded my baby in for not voting for the vague “yeah, but she’s worse”?   What happens when it is a decided that my “standard retard” is a drain on the system making everyone elses’ life more difficult?  There will be a supreme court in place likely for the rest of his life who will err on the side of believing that as a universal truth.

The only politics I ever talk about in my writing is my belief that most people are good but misinformed. Perhaps not in my lifetime, but certainly in his, I believed that it was possible to change the world around him enough that true inclusion and a dignified life were possible and through that, the need for the work of disability advocacy would dwindle.  Perhaps I truly believed all that because I see the innocence in his eyes.  He is a pure soul who has helped me see good first and maybe I can spread that message for him.

So, forgive me if you were one of the people who so desperately wanted political change if I seem a little distant from you.  While I am hopeful that my fears are akin to “they’re taking all our guns from us!” it’s a bit harder for me not to be devisive when we are talking about my baby.  But don’t worry….A2 won’t judge you.  He is forgiving and will love you anyway.

Allergies and Autism and Sensory Overload, Oh My! How to Make Halloween Inclusive

Halloween is right around the corner…here’s some of my top tips and tricks to make Halloween fun and to hand off to any of the indignant PTO moms who have forgotten that ALL kids want to have a good time…..

Running through Water

halloween

Though Halloween parties have turned into “Harvest Parties” at school, the anticipation and sentiment of Halloween is still timeless. As a parent I find myself still caught up in Halloween and creating spooky Pinterest fails and contemplating what candy I can pilfer from my child’s treat bag without him noticing. Some costumes are so realistically scary that I am not certain that my red meat consumption hasn’t finally caught up with me and am opening my door to the actual Grim Reaper himself. There is a revolving door of Elsas and Ninja Turtles who could just very likely just be the same child over and over again capitalizing on those homes who everyone knows passes out full sized candy bars.

A couple of years ago I was coordinating a party for my child’s 4th grade classroom. 20% of that classroom had food allergies. I gently reminded parents that the goal…

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Autism’s Lost Text Message

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One night as I was plugging in my son’s iPad, I noticed he got a text.  Many parents lose sleep over whether or not to invade their preadolescent’s privacy by looking at personal messages, but not me.  My child at 11 years old is completely illiterate and he had never gotten a text before.  I glanced around as if nervously waiting to get busted for reading it, but the truth was my stomach was in butterflies out of joy and excitement.

Hi A2.  This is Ryder

Are you in bed?????

If you aren’t what time do you go to bed???

Maybe I have been wrong!  Maybe school has been helping him truly cultivate and explore friendships after all! Real ones!  A2’s class picture was on the refrigerator and I ran to it to ask him which one was Ryder. I recognized several of the boys in his class but didn’t know anyone named Ryder. Unfortunately, my son has a severe language disorder called Childhood Apraxia of Speech in addition to Autism so I had no way of knowing for certain which one Ryder was because A2 enthusiastically would answer “yeh!” to every child I pointed to including the girls.  Could he be a child from the resource room?   I could not know that either because  the school will not tell me the names of any of the children in that room due to “privacy”.  The kids he spends the majority of the day with.  The kids who also probably never get or send texts or receive invites to play. The kids, like A2 who can’t just ask each other and then come home and tell their moms.

My husband and I were feeling almost hypervigilant over where we would know this child from since the phone number’s area code was from a city we used to live in many years ago.  A2’s real name is an unusual one, so clearly this is meant for him. How did he get A2’s number since A2 doesn’t even know it?  Does this child comprehend that A2 can’t read? Could this be an adult?  A teacher?  A predator?  My joy was quickly turning to irrationality as my husband texted back to give this Ryder person a piece of our mind!

As it turns out…..Ryder was trying to get in touch with A2.  Just not MY A2.  Ryder was in 6th grade and had just moved from the area code on the message to our area code and had met a new friend at his new school (not ours) that day, exchanged numbers and did what every 12 year old does when making new friends.  A2 was contacted by a ghost. An illusion of a promise of the world to come.

The coincidence lacked the sparkle of serendipity and sent a gut punch that made the butterflies swirling in my tummy fly out of my mouth and away into the sky out of reach.  One three lined text of 19 words, 57 characters, 6 question marks and 2 happy face emojis sent me into a 10 minute emotional tailspin ending in a disappointment.  While my reaction may seem dramatic and my sweet boy was oblivious, man alive, I know he would have LOVED for that text to be his if he knew. You see, that would mean someone wanted to tell him that they got a new skin in Minecraft, or ask him if he wanted to ride bikes to the park or see if he’s allowed to see that Jason Bourne movie. It would mean that someone might be sneaking him a You Tube video he isn’t allowed to watch at home or asking him if he thought the new girl was cute.   It would mean that someone was thinking of him right at that very moment. It would mean he had value to people other than me and his dad.  It would mean he was growing up.

Before this whole parent thing came along and made me loopy with worry, I used to help families move their loved ones into nursing homes.  One particular instance, I helped take inventory of a man’s belongings and I asked him to give me his wallet so I could start a resident account for him to keep his $10 bill safe. He refused and his wife asked to speak privately with me in the hall.  “I know he has no need for money here, but is there any way you can make an exception to let him keep it with him?”. I’m certain I did not handle the situation with sensitivity or understanding because she replied, ” We were never wealthy people but he was proud of the fact he always put food on the table or could hand his sons money when they needed something. That money in his pocket makes him feel like a man. And that, child, is all he has left to feel like one.”.  I let him keep the money and have contemplated since then what the last material thing I would hold on to would be and why. I just didn’t realize that it would come earlier in life and be a random text message that was not meant for my child.

These things.  These little things that give us a perceived sense of value–that we anchor to other things and make them into something more.  Ultimately, the text itself was probably meaningless to A2.  He however does very much care about all those things that receiving a text implies.  Having a way to communicate with the world makes you a part of it and having a rolling digital scroll of blue and white messages are like the receipt to prove it nowadays.  My friend’s daughter left her phone at home while she was at overnight camp and powered up when she returned home to 1022 unread text messages. I never did ask if she read them all.  I do know that A2 will never experience the betrayal that can come with adolescent friendships and are exacerbated by text messages.  No girlfriend break up text.  No secret texts between friends who are standing right there with him, exploiting his trust.  No anxiety over the three dots or “read” receipt.  No.  None of that. While I am disappointed that Ryder misdialed and reached out to the wrong A2, just for a moment I thought about grounding A2 from his device because he knows he shouldn’t be texting so late.

I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of xanax.  I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem…the neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!   I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.  There was an envelope on his desk with all the “getting to know your child” papers like everyone else.  There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.  Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff.  Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.  And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.  A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”.  She meant well, but he could be a rock star at his other school.  I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.  I’m ok with all that.  What is hard is that the rest of the world generally is not.  While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will skype or text him later.  Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.  He doesn’t get detention for talking out of turn or showing up to class late.  He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.  And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else. The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.  And I won’t sit through that.  So tonite, the very last curriculum night of elementary school for me ever….like a pro  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

Here is a short list I had some friends help me compile.  Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie

Express my dog’s anal glands

Watch another episode of Caillou

Make out with Donald Trump

Fall asleep in an Uber

Run 5 miles in the summer without chafe guard

Receive a text from Anthony Weiner

Wear truck nuts as a fashion accessory

Get through a Monday without coffee

Drive across country with my kids with a dead iPad battery

See my dad in a man-thong

 

 

 

The Mending Wall

IMG_6047These wildflowers grow on a narrow strip of grass between someone’s property up against a century old stone wall and a city sidewalk near my home. There is a handwritten sign on a stake stating simply PLEASE DO NOT MOW OR SPRAY WILDFLOWERS. THANK YOU. While seeing them in full bloom one might wonder why someone would do that even when instructed to.

Today we were shaken again to our core. Today we were reminded again that nothing should be taken for granted. I am angry that again I feel afraid for my children when they leave the comforts of home.  I am conflicted because A2 is sick and at a time I should be saddened for 50 families and frightened at the fact that laws continue to exist that allow for permits for individuals to decide the fate of 50 people in one rain shower of shots. People who were given the right to exist with equal love are gone and we are all reminded there is still an opposing view.  But A2 is the kind of sick that makes his father talk in circles and makes me stone faced and logical. The kind of sick that sinks our instinctual fears as parents until the wind kicks up again and fills our sails to let us know it’s smooth waters soon. I can’t fear all things at the same time.

So I can stop to show you these flowers I saw today. And you can stop to see them. And we can all appreciate that someone stepped up to make sure that they bloomed to their full beauty for all of us. Please see them. Just for this moment. ‪#‎onepulse‬  

On the Eve of Your 11th year…..

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Your brother saw the ocean for the first time about a month before we knew you.  The expanse stopped him in his tracks leaving him silent and still.  The moment you were born 11 years ago today you cried and screamed and when they held you up for me to see I instinctively whispered your name.  You stopped crying, found my eyes  and you were silent and still and you took my breath away.  Your presence in our lives has been like seeing the ocean for the first time–beautiful and tumultuous and every day is like seeing the world in a way no one else gets to.  I feel lucky I get to be your mom.  Happy Birthday sweet A2…….

Day 21. T is for Teachers and Therapists.

Day 20 2016: T is for Teachers and Therapists

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Day 20

Day 20:  T is for Teachers and Therapists

97. A2 has had a total of 97 teachers and therapists in his short 9 years. Some were hand- picked….some chosen by fate and luck of the draw. Some were published…lauded recognizable names….some were quiet presences of whom I cannot remember their names. Some have been with us for the majority of his life. Some have only jumped in for a blip of time in his almost 80,000 hours on this planet. Some were stellar….life alterers….some just showed up because they had to. Some interpreted my coolness or seeming indifference to them as being non-caring. Some recognized that I always had my child’s best interest in mind all the time and understood it was important for me not to be too attached for fear of losing perspective and not holding them accountable should his learning derail. All have had a permanent impact…

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Day 18. R is for Relationships

Day 18 2016: R is for Relationships (originally posted 4/2015)

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Day 18

“Are you sure he has Autism? He’s so friendly…”. While there are more nuanced aspects now to the criteria, failure to develop peer relationships appropriate to developmental level is one of the defining and most obvious diagnostic identification for children with autism. Interest in people in general, desire for friendships and loving behavior can muddy the diagnostic waters and confuse people about what autism is and what autism isn’t. Disconnectedness, aloofness and lack of desire to be touched does not always translate as a lack of desire for relationships. The desire is there, the understanding for how that happens is not. It can just be easier to be by yourself. A1 can tell you that. Indiscriminate friendliness, hugs and kisses to those he loves and the compulsive desire to be around a lot of people doesn’t always coexist with developmentally appropriate social skills. A2 probably would tell you that part…if…

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Autism Awareness Month 2015. K is for Kismet.

Day 11

In the month of our 15 year anniversary, I can confidently say we have embarked on a journey neither of us could have expected.

In some ways I wonder if our trek is easier than others since we never had musings of what our unborn children would be like or what kind of parents we would be.

…or if we would be parents at all….

I believe in a judicious balance between predestination and free will. Sort of like walking into a movie complex. You can pick the movie you will see, but once you choose it, the plot and ending remain the same. It is up to you if you decide to leave the theater to get popcorn or simply decide that movie is not for you and you should have never listened to Siskel and Ebert’s reviews to begin with.

All marriages require a gentle balance between cohesiveness and independence….and especially with families like ours. Stress is a constant, sleep deprivation a given, and child rearing? Well, throw out everything you ever thought you knew about that. Not everyone can do that.  Usually, the stronger is left holding the bag on their own.  I know too many families like that and watch in awe as the parent left behind carries the weight of her world.

Through thick and thin we give each other the space we need, recognizing we are in for the long haul.  Our children are who they are supposed to be.  We make the same mistakes as every other parent in every other union, but with the knowledge we must be united as forever parents, even long after we are gone.  And for that, perhaps we are luckier than most.