Because we are so immersed in this world of autism I have erroneously concluded that everyone who lives outside of this Village is already aware of autism. However, there is a secret sorority that exists…one equipped with a secret handshake and password. I am in that sorority yet have no recollection of agreeing to join. Autism is funny like that. The Village of Autism parents is a unique one. We are a motley crew of individuals whose path may have never crossed otherwise. We meet each other in waiting rooms and lobbies of doctors offices instead of in the PTO. We have closed blogs and Facebook pages instead of casual phone calls. We learn more about the newest treatments and resources from each other than we do from professionals. We talk about how well our child is pooping quicker than we will discuss how well they are doing in school. Though we are typically the least able to, we are often the first responders to others in the Village because we are more likely to reach out to one another than we would outside of the Village where no one speaks our language. And we find each other….everywhere and all the time. Today while sitting on the floor in the middle of the children’s shoe department feverishly tearing inserts out of shoes and hopelessly attemping to shove A2’s newest orthotics into them with no success I broke down and cried. Just sat there in the middle of the floor, surrounded by ridiculous shoes with flashing lights on the soles and sobbed like a toddler might who couldn’t find the shoes she liked. At that same time, I peered up to see a woman pushing a cart with one hand while calmly using her other to push her much-too-large child who was humming loudly down back into his seat. We made eye contact for a single moment and silently nodded–her nod seemingly said “Yes….I know those orthotics were made wrong twice before in 7 months and represents 6 visits to the clinic over that same time. Yes…..I realize this is the 3rd store you have been in today that absolutely does not carry shoes your 9 year old can wear with the braces he must wear on his feet. Yes….I realize that your tears are really about your kid and the pain and blisters he will probably have again that he can’t communicate or the weird, white 1960s Frankenbaby shoes the orthotics company will recommend that look nothing like what his school friends will be wearing. Yes….I see you….and I know you see me….” V is for my Village. The quiet, connected Village where my family lives.
T is for Teachers and Therapists
112. A2 has had a total of 112 different teachers and therapists in his short 11 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 105,000 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 on my entire family’s lives and for all of them, I am grateful.
A2 was about 2 years old in this photo. Debbie Jo was one of the first handful of professionals to work with him, and at the time, I had no way of knowing this fact. She was a paraprofessional in his early intervention program and always made sure to seek me out when I would come to pick him up to give me feedback about his day. When this post was first published, she was very ill with a long bout of cancer. Despite her county job, insurance, COBRA and her life savings eventually ran out. Despite giving of herself and opening up her home to those less fortunate, at her most desperate moments, because a GoFund Me account was set up to help with medical expenses, I would have known nothing about the exceptional kindness and generosity she gave to others throughout her life other than that small blip on the map when my child showed up in hers. Debbie Jo died last year and I pray that it was with peace given the level of selfless life she chose to lead that I was never aware.
We fight for our kids. Many times that fight is with teachers, therapists and administrators. They chose their careers and they have a job to do. The are human beings. We know the people who are in this for the good fight and we know the people who should have left years ago. We know the people who don’t get it. We know the people who burn the candle at both ends and we know people who have dropped the ball. I have fought many of these people who teach my child, but typically as collateral damage in a system that is failing helpers and victims. Fight…fight, fight SO HARD for your kids. ADVOCATE like hell for yourself if you have a disability. Don’t be afraid to call helpers out, but BE FAIR. Ask to see data. It is your right to see it. It is your right to question it. Do your research. If you have an instinct there is a problem, be sure to tell them you are coming from that place rather than accusing them…but again, ASK, ASK, ASK how to be reassured. In their world, no matter how destroying it is to us, your child may be a learning experience. And if that is all they can offer–it is all they can offer.
In our world…we only get one time around. We don’t get a do-over. Recognize their human-ness and recognize necessity and try to create the most cohesive balance.
About 9 years ago when A2 was 3 years old, he attended a social skills group with a speech therapist and 3 other minimally verbal children. A2 was by far and away the most pleasant and social of the 4 kids in the group and at that point did not have an Autism diagnosis. I didn’t know WHAT was happening with him for sure. I sat in that lobby week after week wondering what A2 could possibly be getting out of the group given none of the children had any functional verbal language and a great majority of the time the adults were wrangling to keep the kids all in one spot. After the final session, I sighed at the speech therapist and asked her what she thought was going on with my beautiful boy. She asked me if I had ever heard of the book Schuyler’s Monster by Robert Rummel Hudson. I had not. It is a memoir written by a father about his wordless daughter. A2 and I left the speech session and immediately went to the library to find it. I suppose I would have been reading more about parent perspectives of young children with disabilities had a known my child had a disability. But he was 3. He had delays. A gross motor delay, a fine motor delay, a speech delay. He flapped. But he also looked at me and smiled, knew his name and cuddled. Other than the cache of bewildered parents who sat in lobbies at therapies, I had no connections to others going through similar circumstances. As an action oriented person, I didn’t know I needed to have those connections.
That is until I read Schuyler’s Monster.
In some ways, I feel like that is where my story begins. It started as an easy read because Rob is poignant, funny and his words wash over the pages and get right into your brain. And. Then. To put it simply…I was knocked on my ass. He was telling my story. He was me. And Schulyer was almost exactly A2. Right down to the personality. I had to set time aside to read when I knew I didn’t have to be “on” because I wasn’t sure how what I would read would affect me for the rest of the day. Schuyler has a rare genetic disorder called Bilateral Perisylvian Polymicrogyria. I called A2’s neurogeneticist at the Cleveland Clinic and insisted he himself go back and read A2’s baseline MRI and not rely on the radiologists report. He humored me and alas, A2 and Schuyler did not hold this in common. I finished the book and felt like I was underwater. What was I going to do without Rob, Julie and Schuyler? I felt connected to something and yet I had never felt so alone in my whole life all because a piece of cardboard filled with paper and a beautiful little girl on the front told me life might not be what I think it is. I was not an avid reader of blogs and at that point was not on social media. I found his blog Fighting Monsters with Rubber Swords and reconnected with his words. Soon, I found another blog that spoke to me much in the same way written by a teacher who had an autistic child called Flappiness Is. At this point, we had an autism diagnosis and I was in the throes of learning to advocate for my child in ways that rocked my world. Leigh was there to say the things I couldn’t say. Then there was another (which is no longer around) that made me laugh about our situation when I needed to laugh about it.
I now had a community and resources I could access whenever I needed it.
I am an accidental blogger. I wrote 3 posts back in 2010 and when I realized I really had nothing to say, I was done. It wasn’t my time to talk. I don’t know if it is really my time to talk now, yet here I am. Instead of following 3 blogs, I follow dozens and all for different reasons. I have met the most amazing folks along the way because of it including the now very grown up, very kind and very inspiring Schuyler. And she seems to be exactly the person I hoped she would grow up to be when I met her as a little girl as typeset words sitting on my couch 9 years ago.
There is no need to be alone if you cannot find “your people” in your community. I never dreamed that some of my closest confidants are people I have never met or only briefly met in person. This list is not exhaustive…..and most categories will overlap, but my resource list of favorite blogs/social media folks you might want to check out (note also most blog links will be the same name on Facebook):
PERSPECTIVES FROM THE SPECTRUM
MEMES/HUMOR/KEEPING IT REAL
ALL THE REST
As Kelly knelt on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.
I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing for this idea I had and had no idea what she was getting into” sounds lame..and lengthy. Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy. What do you call the person who helps provide authenticity to an experience? I don’t get to own that part.
Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert. She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know. I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.
We officially started a whole year ago as of today. Happy anniversary Kel.
Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.
When I got up off the pavement a year ago, I believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled. It was time to assume that folks were coming from a place of not knowing and not from a place of not caring. My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us. How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?
At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society. The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled. I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need. I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying. People were hopeful. I changed minds. Momentum. Or so I thought.
Through this process, I held the value of neutrality and being non-partisan. Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end. Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees. I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree. In social media, I shared stories of injustice or cruelty without solution or politics. Awareness is the first step of acceptance…it is not the end result.
Alas, I am not an advocate. I am a storyteller.
One year later, I am sitting at the same desk but in a very different place. I feel scared. Was I was horribly wrong about this genesis of readiness for change? It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.
The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.
Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.
“But…hasn’t that been your truth for years?” my husband asked.
He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety. Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.
“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.
Regardless of what you believe or how oppressed or even how entitled you are, it is time. Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.
It is time. We all have a story. Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.
Or as she might tell you, it will make you woke AF.
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.
Lots of people have jumped on the November Thankful Challenge on social media. I see people try for 30 days to declare the things in their lives for which they are grateful. As a therapist, I can tell you its an excellent exercise in mindfulness–a way to connect and be present for those things we tend to take for granted. Soul soothing salve in the bustle of every day life. It’s also helpful from a cognitive-behavioral standpoint. If we take a few minutes every day to reflect on the things that are going right amid the trashcan fires of life all around us, over time we can actually retrain our brains to become more centered, less reactionary and supposedly just happier in general. It becomes a good habit. So, why don’t most people take appreciative stock every day? Well…I believe its because most of us have what we need (most and need being our operative terms.). So even if you don’t have much, you DO probably at least have a roof over your head, access to clean water, some kind of education and likely at least one person in your life who cares when your birthday is. When things are going OK and at least that bottom floor of Maslow’s pyramid is built, we can still say, “well….at least I have my health” or “I’m lucky I have food on the table”. This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society and when we are not bombarded by rampant poverty in the streets or young people regularly dying from things like dysentery or malaria. Yet as special needs parents or as a disabled people, we are often expected to display this type of gratitude and grace in circumstances that at times feel this imbalanced.
I have somehow won the life lottery…and I didn’t do anything to deserve that any more than some starving, orphaned toddler in a war torn country did to deserve his lot. There are many people who might look at my family and think otherwise since we were dealt the hand of having a child with a disability. We have a life that can be exhausting and lonely and sometimes just very scary but what I find is that when life is that way, it is rarely because of anything my child has done or his disability itself…its more about the circumstances around him that prohibit understanding, access, equality or equity.
And thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.
If a surveyor asked my child’s providers,”Do you think A2’s mom is grateful for the services you provide her child?”, my guess is that at least 80% of them would answer “no”. They would be completely wrong, but still. If that same surveyor could time travel and go back year by year to 2007 when A2 first started getting help and ask the same question, I suppose that the percentage who would answer “no” would shrink in proportion to year asked. Regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-yous doled out, at this point I am still going to be seen as a wistful pariah.
As A2 ages and the disparity in needs between he and his peers grows, so does the need for advocacy. There is a pervasive belief system that exists that keeps those who are disadvantaged in some way from asking for more and it is through the guise of gratitude and the false belief that the basics are a form of entitlement. You are lucky to get what you get….even if it is not meeting your needs.
- 20 sessions of speech therapy for your non-verbal child? Well…at least your insurance gives you that much…some people can’t get speech therapy approved at all!
- I’m not really seeing progress in my child, but the aides are nice to him and he seems happy.
- Keep a mastered list of goals to probe yearly? You’re lucky we can even work on her goals with as many as she has.
- He doesn’t need a bus aide. He can make noise so its not like it would turn out like that boy who died on his bus because they forgot about him all day….
- Sorting nuts and bolts is a career for lots of people. She may have an above average IQ but she’s lucky anyone is willing to take a chance on her
- Kids just love him here at school, but no….we can’t tell you who any of them are so he can invite them over and extend those friendships to the community. At least kids play with him here, that says a lot about the kind of person he is.
When exposed repeatedly to systemic issues that shame you into to accepting less, you get a little crisp when it comes to the process of fawning over people doing the jobs they chose. Can you imagine for one minute being OK with your child failing a subject at school and then thinking, “well…at least no one is hurting him there”? No…those things are not interchangeable. Ever. Or what if your child’s class was going on a field trip bowling, but because they didn’t have bowling shoes in her size they just didn’t even tell you about the trip? You are probably going to get more than a little angry…and maybe even angrier when they suggest that all the kids who wear a size 6 shoe will get to go to for a tour of a widget factory instead at the end of the year, so what’s the big deal? As parents, we want to always feel and show gratitude to those who we entrust our children…but when trust is bent it dulls the surface.
At the end of last school year, one of the school administrators let me know just how stinkin’ cute A2 is and how he brightens everyone’s day and how much kids just love him. “He has made so much progress..he comes right up to me now and always asks to see the PA system!” she exclaimed. I nodded and smiled and said nothing about how platitudes like that can ruffle the feathers of pre-adolescent special needs parents because, you know….gratitude and grace. We have to show ours a bit differently. It’s not that we don’t like the compliment, however very soon, that go-to strength of his of being little and cute, the thing that draws people to him and keeps people friendly will be gone. Drinking out of a sippy cup with a full beard is not adorable….it will be confusing and odd to people who don’t know him. And it scares the hell out of me. So instead I say nothing for fear of not seeming grateful for at least that.
“Yes, progress.” I say. “Though I worry. He still cannot read, we still have not cracked that code and he only has one more year here”. She side eyed me with a friendly smirk , lifted her finger as if to gently stop me and said “Mrs. ASquared, you GOTTA focus on the positives. You just gotta. He’s a great kid”.
Do I though? I keep getting taught that focusing on his deficits is how we move forward. And by the way…Yes, I do….and I do it all the time….but not for the purpose of making sure other people can see the gratitude. I unfortunately don’t have enough energy anymore to make others feel good for doing their job . Its not to be cruel, its so I don’t lose sight on how to do my job.
Focusing on the positives is why I have to advocate and ask for more. More out of the box thinking, more time, more energy, more inclusion. I see what he is capable of achieving all while being systemically reminded in quarterly meetings of things he still cannot do, how services won’t be expanded to accommodate that fact and how planning for a future where if we are lucky, he will get to be a marginal member of society. My child lives in a society that sees the deficits, that sees the differences and believes that the slightest hint of meeting his needs because of his differences is an entitlement. A society that believes that being adorable is a strength. A society that makes heroes and saints and examples out of others showing my child dignity, when they come to work or are being a friend. A society that doesn’t hashtag abuse, neglect, bullying and even murders against children like mine.
So team members…if you are confused about my level of gratitude for your involvement with my child, don’t be. I am never short on gratitude, and when my child is happy and progressing, what our collective efforts are doing is working. I too have a job where the pay is low, the paperwork is tedious and 100% of my work is about helping other people. I too am rarely told thank you but that is not why I do what I do. I am trying to make the waves to change systems and influence the way the world sees people who are at a disadvantage. By accepting less simply because we are told we should be grateful for what we get is the dysfunctional thinking that will keep things inequitable.. always. I am doing the future of disability advocacy and everyone who works with kids like mine a disservice by this act as well. When I am sitting on this side of the table, its my job to check and double check your work, ask questions and tell you when something isn’t working. That is not the opposite of gratitude, that is showing you that what you are doing matters. Its the ultimate compliment. My kid is your boss and I am trying to teach him to always get what he needs based on HIS different needs in this world.
I’m just trying to do my job as his mother, one that is universally never the recipient of gratitude is often met as if I am a villain and yet is still the most rewarding job in the world.
J is for Just Ask
When I sat down every day last year to do this A-Z project the my biggest take away were the candid responses from friends and acquaintances. Many of whom told me that they wanted to reach out but often times they didn’t know what questions were ok to ask. I understand that on a few levels:
- As an inhabitant of this earth, when we see something we don’t understand or is different we feel compelled to want to know the “why” or the “what happened”. Perhaps its part of the survival instinct. A primitive way to avoid something that is contagious or preventable. So, often times when it’s not thought about and someone approaches me and says “what’s wrong with him?” my instinct is to say back “rude people are what’s wrong with him”. When I shift my schema and recognize that even in those awkward moments there is the possibility to make it teachable, I can have a lot more empathy for the individual asking. After all….I am not sure I am that much more comfortable with a stranger asking me a more direct question either. “why is he making that hooting noise over and over?” when really I might have absolutely no f-ing idea myself in the moment but I would very much like it to stop. Parents…whether we like it or not, we are the conduit to bridging our children with this society. Many of us are their voices. Even if one person out of 10 who ask are asking to be nosy or rude…if we do not respond as an advocate, we make the assumption that all people who ask in that way are being nosy or rude. So, instead of “mind your own business” or “whats it to you”….try “I think what you meant to ask is that you notice that he can’t talk. This is his speech generating device, would you like to see how it works?” or “My child can understand everything you say and the way you asked that in front of him makes me uncomfortable. There is nothing wrong, but it seems like there is an aspect of his behavior that you would like to know more about. He has Autism and maybe one of us can tell you more”. Pollyanna much? Yes. But the only way we will change the asker’s behavior is by gently alerting them to the problem, offering a solution and giving them a reality check.
- On occasion, people want to ask how they can help. A lot of times people don’t realize we need help. For those of us who have kiddos who don’t have a tremendous amount of trouble in the community….many of us move along to normalize our experiences. I have been told that I give off the air of having everything under control and that I don’t need anything. Part of this is for my kids benefit…no one wants a hot mess of a mom in public. Another part of this is because as my job as a therapist in this close-knit community I feel like I need to maintain a balance of vulnerability and strength…again…the hot mess part needs to ride in the back seat and can ask “are we there yet”. There are other parents whose kids CANNOT safely be in public places. So you just don’t see those people. Their life behind closed doors is like an invisibility cloak…..they are not getting asked often for those reasons. And frankly, many of us have NO IDEA what to tell you how you can help. When I do have family visit, they come infrequently enough that to dole out a honey-do list also requires having to walk them through where things are, etc…..which means more work. If there were an emergency, they are not enough of a trained listener to know what he needs if he tells them. When a friend asks if they can watch your kids so you can get out…how do you explain that you can’t imagine asking them to change a 10 year old’s diaper ….or the fact that they probably won’t get to sleep through the night and need to keep one eye open when they are sleeping. And sometimes people ask to help….they just don’t want to do what you do need….so their perception becomes that you are unreasonable or are not taking their help. All can serve as barriers to asking the right questions….or giving the right answers for assistance.
- People make assumptions instead of asking at all. Just the other night, a young woman I work with asked me for advice in a situation about a member of her not-for-profit youth group. This teenage girl has Autism and when the entire group is together she tends to get very dramatic and will end her tirade by running out of the room. This young woman sighed and said “she only does it in big groups…..attention….We are thinking of ways to let her know that maybe this group isn’t a good fit for her…its not-for-profit so we can’t tell her she can’t be part of it.” We discussed the fact that perhaps they were misreading the function of the girl’s behavior. The consequence is what sustains the behavior….and if no one is rushing out after her, what is the likelihood that this behavior is to get attention and not escape or something internal due to the stress of being in a large group? She wondered aloud if they should contact the girl’s mother to try to figure it out. I wondered aloud what would happen if they just asked the girl herself, since she is her own expert. Use the time and energy to find out what she needs to be a part of the group in a way that works for her rather than using that energy to figure out a way to help her move on. (coincidentally, just the day before, someone sent me this video….I was able to share it and help her understand the impact she could make by just asking. https://www.youtube.com/watch?v=T8qFqCFHQfE&nohtml5=False). We cannot help but to look at others using our own lenses. But sometimes our lenses are smudged, are rose colored or even broken. By not asking in this kind of situation, others assume they know what is best.
Lets face it…its uncomfortable to ask about people who are different than we are. We may be curious, afraid of coming off as rude or misread other’s cues. We may not want to know the answer, we may not want to change our own ways. We may already have assumptions and think we are right, we may be uncomfortable due to our own scripts about social norms and frankly….some of us…we may just not care. For those of us being asked…..we may be offended, we may be hurt, we may not want to talk about it. We may not know the answer, we may not want to admit to an issue or call attention to it…we may not want to be reminded. We may not want to be rejected. So….let’s all agree on something….asking and telling can suck at the outset. Let’s move past it. Those of us who are Autism Families…we ARE the awareness….how you choose to let that manifest is up to you. In my world, however, if you ask me, I promise to tell you……
I is for IEP, IDEA and Inclusion.
These three “I” words have forever changed me as a person. If you have a child in special education, you probably just had a shiver run down your spine just by reading those acronyms in print and may be thinking the same thing. All of these things serve as a blessing and a curse to our kids…and also to the educators and administration serving them. Back in the day, the Individuals with Disability Act (IDEA) was enacted to refine and replace what few laws there were to protect children with disabilities within the education system. It was meant to also focus more on the individual rather than on the disability itself. IDEA has been re-written several times since 1990. There are several things it does both in a good way and also in not such a good way:
- It provides a free and appropriate public education (FAPE) to all kids regardless of disability at public expense. The key word here being APPROPRIATE. The downside: There is a pretty decent chance that what you and your child’s test scores say and what you know is appropriate will be very different than what the district thinks is appropriate. And most likely because of that other key word….FREE.
- Evaluations: This law makes sure that children with disabilities are evaluated in a way that makes sense. We don’t want to use one specific test to decide if a child needs special education services. That way discrimination is prevented and ideally, these evaluations serve as a tool to know exactly what they will need educationally. The downside: Evaluations are only as good as the people trained to administer them….and only as good as the educator who can recognize an issue in the first place.
- Individualized Education Program (IEP): These are legal documents that establish goals, accommodations and modifications to the general curriculum and access to qualified professionals to ensure that a child with a disability is learning at the right pace and to his ability within their environment. These plans level the educational playing field for those with a disability. The heart of special education. There are 13 categories under which a child may qualify: specific learning disability, speech and language impairment, blindness, deafness, hearing impairment, visual impairment, orthopedic impairment, traumatic brain injury, autism, multiple disability, other health impairments, emotional disturbance, intellectual disability, The downside: Because they are legal documents and may be audited and are monitored on a quarterly basis, educators may have a very high self-preservation incentive to make certain your child is meeting his goals….at least on paper. The more savvy the parent, the more tricky this can become.
- Least Restrictive Environment (LRE): This ensures that your child is placed in an environment that meets his needs as independently as possible in an educational setting that is appropriate for him. The goal is to work toward the LRE. The downside: For those of us with kiddos with Autism, this is not always cut and dry. Especially those who are cognitively intact but perhaps have a language impairment or another issue which may stand in the way of independence. An emerging issue in the field is for those kids who are considered “twice exceptional” such those who are intellectually gifted but with severe behavioral issues. And what does “least restrictive” mean anyway? My kid who needs 1:1 to learn can totally sit in a regular classroom to do that. However, I believe my district interprets LRE to mean that he be in a contained classroom without a 1:1 because then he might have more physical independence in that room. Who is right?
- Protections for your child…..protections for you as a parent: Because of IDEA, there are procedural safeguards in place to make certain that your child is receiving the services the school says they will provide and a protocol to follow if you believe they are not. Additionally, these protections allow for parent participation and child participation as an equal member of the child’s school team. The downside: Let’s face it…if you are not an educator…or even know where to go to get what you need, you will never be an equal member of your child’s team. Procedural safeguards and parent participation are ultimately only as good as the questions you know to ask, as your attorney and your bank account. The catch-22 if you do live in a very good school district? There is a good chance that anything that goes to due process is going to take a LOOOONNNNNGGG time. And think about that for a second. If there is a FAPE violation and it works its way all the way up to a due process hearing doesn’t that seem counterintuitive for your school district to allow little old you to go to court with them? Wouldn’t it make more sense to fix the problem as it would be much cheaper and less time consuming to do so? It’s not. At least not to them. Because no matter how much the school doesn’t want to throw money at something they can still probably afford to pay a better attorney for much longer than you can. And besides…the year and a half it could take…perhaps that child won’t need what it was you were asking for by then…or make your life complicated enough that you will break and succumb. That seems like a pretty good gamble for a district. And then it doesn’t set a standard for other families to ask for the same.
The last 25 years have been interesting ones for the education system as a whole. When the parents who walked before us clawed and fought and struggled for these laws it was at a time before the internet, before all the revisions, before standardized testing existed in the way it did, before No Child Left Behind and before Autism was 1:68. IDEA is necessary no matter how you slice it, however it exists in a very different system than it did in 1990. At this point I know a lot of the law like the back of my hand and the parts I don’t know I am now educated on how to find those rules. I have a list of socio-emotional goals for almost every developmental issue at my finger tips and I have an entire community of people going through the same struggles I am at the click of a button day and night. All of this has been achieved through this tiny-huge world we have online. I know exactly the gap closure between special education kids and regular ed kids not only for my district, but for my school. I know the 6 payment tiers that exist and the formula used to calculate how much extra funding my district for each of my kids for using special education services. I know what belongs where on all 13 sections of the IEP and how to make a goal measurable. And I know when I am being BS-ed by my district. I don’t know all of this because of my training…I know it because I live in 2016 and any parent with a computer and the desire can learn the same. In 1990, my school district certainly was not expecting 1 out of every 6 children attending (or 15%) to have some sort of developmental disability….or for the Autism rates to be 600% higher. My child’s elementary school currently has about 700 students and about 100 IEPs (last I heard)…all while serving about 29% of their students as English as a Second Language with limited proficiency. Teachers are stretched thin. Inclusion and LRE are so important for our kids future, yet most regular education teachers were not taught the basics on how to include and teach special ed kids in differentiated instruction or how to manage a classroom where there are multiple children with conflicting accommodations. (ie: When Johnny gets stressed, he can crumple paper…but Jimmy’s auditory sensory integration issues make it impossible to keep it together when he hears paper crumpling….). Parents are communicating, educated and knowing the legal hoops to jump through if their children’s rights are being violated. It is a system that cannot hold itself up and still serve our most vulnerable children to be the most successful they can be. Parents…please keep fighting for your kids….keep learning everything you can. Educators…please do the same. I do not have the answer….I am just hopeful it is found before my children have to move on from the “protective bubble” of IDEA and there are no grown up IEPs.
D is for Diagnosis
By the time my oldest was 18 months old, I knew he had Asperger’s….but no one else seemed to know except for maybe my husband. He spoke like an adult yet seemed confused whenever anyone asked him something directly. (“He’s a genius! Listen to him talk…he’s just busy thinking about other things”). At Mommy-Tot class while all the other babies would watch with wonder as technicolor bubbles floated by, he was finding his way across the gym to open and close the door over and over. (“He’s a genius! Bubbles are beneath his intelligence!”) And yes, he loved to go to the park….but would decide which park based on what kind of public toilet was there and then would spend the majority of his time in said toilet if allowed….and I would often have to threaten him with a consequence if he didn’t go and play (“He’s a genius! He’ll be an engineer one day…he just wants to know how it works!”). While he also never hugged or kissed me, he would let me do it to him. I said “I love you” any opportunity I had but he never said it back. He would let me sit down to play with him, but his back would soon be turned and he was playing on his own again. His conversations often consisted of repetitive phrases over a video he watched over and over for months at a time. The list could go on and on….but the fact was that he was not particularly disruptive, he was functional and he was so cute and tiny and spoke so well people mistook him for a quirky genius. What was difficult is that we lived far from family and friends so when they saw him for brief periods they would just tell us we were worrying too much. They would see the quirk for a few days at a time….not hours on end like we saw. So when my youngest got to be about 8 months old and clearly had serious medical issues all concerns we had about A1 went to the way side. My concerns were still there but again were also pushed aside by the pediatrician when I would bring them up (“Some kids are just persistent” “Drooling has just become a bad habit”) It wasn’t until he was 7 years old that I had him tested and really, it was only because he was floundering at school. I was being told that “some kids are average to below average”….the same kid just 2 years earlier everyone was telling me was a genius. I had to see if he had a diagnosis in order to get him the assistance he needed at school…And sure enough….psychoeducational testing by a licensed psychologist showed what we always knew. ADHD and Asperger’s Disorder. A few years later I actually got a second opinion from another psychologist…and guess what….same outcome. On standardized testing. Across settings. Again. He is definitely not a genius…but he is also definitely not below average. A1 is the fall-through-the-crack kid. His rigidity can be seen as defiance. His poor social skills makes him look like a loner. His attention issues make him look lazy. And as the person who lives with him 24/7 I can tell you he is no more of those things than any 12-year-old. He is a people pleaser and when he thinks he has failed at that he kicks himself over it. Overall, A1 is going to be fine….but I believe it is because we have recognized the thing that makes him different…but not less.
A2 was not diagnosed until the age of 4 despite my husband and I and everyone around us knowing something was very wrong. What was troubling was that when he turned 6 months old and I started him on solids…everything else stopped. Except for the worst constipation I have ever witnessed. He stopped growing. Stopped. Completely. At one year he was about the same size and weight as he was at 6 months old. He stopped developing but did not lose any skills. At 12 months he was the same adorable little nugget he was at 6 months. Was it possible I willed him to stay an infant? What also did not change was his inability to stay asleep for more than 90 minutes at a time. Down for 90…up for 2 hours. This went on for 2 years and one day I got the flu and was out of commission for 10 days. I had to let my husband get up with him through the night. When I got out of those sweaty sheets after 10 days….it occurred to me that I was not clinically depressed as I believed I was up until that moment my body became an achy, hot mess….I instead emerged a new woman. A rested woman forced to sleep by a virus. A2 had already been diagnosed by a fresh muscle biopsy at the Cleveland Clinic with Static Encephalopathy with Mitochondrial Dysfunction….we got a scary letter to take with us everywhere we went. We were told not to let his blood sugar drop too low. We were told to keep him cool in the summer. We were told to have a very low tolerance for fever and dehydration. We were told he had an uncertain life span.
At about 2 years old when he started crawling he found that rubber stopper thingy behind a door. Thhhhwwwaaaang! He’d whip his head to the side and roll his eyes. Thhhhwwaang again. Again with the head thing and eye rolling. I remember my heart dropping to my stomach. I remember thinking “oooohhhhh shiiiiittt”. I knew that was a stim (self-stimulatory behavior). For the next 2 years I watched A2 develop at 20% of the speed of the rest of his peers. He went from being the most social baby of the group and as his peers developed speech I watched him realize he was not part of the group…to standing by the group and watching everyone play….to standing out of the group and not paying attention to everyone. To this day I believe it is not because he didn’t want to…but because he knew he couldn’t. He flapped. He screamed. He stopped eating all solid food. He had no language other than the vowel sounds of babbles of a young infant. But he was still sweet, and loving and laughed heartily. He was finally diagnosed at 4 years old with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The diagnostic version of “your kid has Autism…mostly…”.
What’s in a name? Autism, Asperger’s Disorder, Pervasive Developmental Disorder Not Otherwise Specified, ASD, HFA, On-The-Spectrum, Neurodiverse, High functioning Autism, Severe Autism, Non-Verbal Autism. You may have heard any and all of these used when hearing about someone who has Autism Spectrum Disorder (the now official diagnosis to describe all of the above as of 2013). We will likely intuitively still call Autism all of these terms because as we have all heard “if you meet one person with Autism…you have met ONE person with Autism”. The criteria was narrowed and Asperger’s and PDD-NOS were eliminated from official diagnosis. In my private practice as a therapist, I now see children who come through my office with a list as long as my leg (I’m only 5 feet tall, but you get the picture). Oppositional Defiant Disorder, ADHD, Sensory Processing Disorder, Dyslexia, Social Pragmatic Communication Disorder, Bipolar Disorder……all in one child. Why?? Because we have eliminated Asperger’s Syndrome from our vernacular. My children have both been reclassified as Autism Spectrum Disorder (as they are supposed to be due to consideration of prior history and diagnosis). But they could not be any different. With hard work that would make your head spin and a hard-core bitch of a mom they continue to improve in terms of working toward being independent, contributing members of our community. But they could NOT be any more different. This is autism.
A is for Advocacy .
Today is World Autism Awareness Day. Coincidentally, it is also the day that I will be speaking in front of a very large audience at a Tedx Event stealthily addressing the first step necessary in tackling the mountain for disability advocacy as whole in society. About a year ago I realized that I was advocating my way to an early grave. The individual battles, bureaucracy and other professional’s personal agendas were getting to be insurmountable. So I stopped. I don’t think I have looked at a piece of paper with either child’s name on it in almost a year. I did it out of self-preservation….I did it as a life insurance policy because I have to live one day longer than A2. My real life insurance policy runs out in 7 years so I either needed to up the ante and increase my red meat consumption to run out my clock or back away. I chose back away. And during that time a metamorphosis occurred. I realized that it may be much easier and much more impactful to change the world around my children through advocacy rather than to fight the good fight one arduous and marginally successful battle at a time. And if you know me personally, I think you saw it happening too because people are believing in my movement…quickly. Very, very quickly. It’s working already.
Advocacy for those with Autism and other developmental impairment is becoming a trickier and trickier thing. The landscape of Autism has changed significantly in the last 25 years. The prevalence rate has hopscotched up from 1:2500 to about 1:68. That’s a 600% increase. One reason may be is that as professionals become more familiar with ASD it has been more frequently diagnosed. While this is true, conventional wisdom tells me that this is only a small part. Let’s face it…how many non-verbal, incontinent pre-adolescents did you know growing up? Because at one point in the last few years I had 2 living on my cul-de-sac. This is not counting the other 8 with varying degrees of ASD who live within a 3 block radius. The prevalence rate has risen at the same time computers became a common household item and paying for the internet became yet another utility bill. For the first time ever, previously isolated families and those with disabilities had a way to connect with a community and also gain information about treatments, supports and advocacy. I have learned more about what to do for my children through the Internet than any professional has ever taught me. People who were diagnosed (or perhaps misdiagnosed) 20 years ago are finding each other and forming a neurodiversity movement. It is for these reasons that I believe the disabilities rights movement has the potential to be the swiftest civil rights movement in history. However, I also believe that it could be one that never fully comes to light for the same reasons. Advocacy and fighting for individual rights are actually very personal experiences. We all have our stories…and some frankly would make most people’s ears bleed to hear them. What is right for one individual may not be whats best for another…and the reasons vary. Mix this in with hypervigilant parents, hypervigilant self-advocates, a fragmented healthcare system and school systems who may have been better equipped to deal with IDEA at a time when they might see 1 kid with ASD in their whole district rather than 20 just in one grade and we have a recipe for a whole system collapsing in on itself with the casualties being the very people we are advocating for. (**Internet Troll Disclaimer: REEELLLAAAXX…..I’m not talking about YOU specifically….I have included other hypothetical situations…as well as many I did not….). As a group, I am challenging everyone to think about the common threads rather than the details. Go talk to an anti-vaxx parent…and then go talk to a pro-vaxx one. Have a chat with a parent who paid for 40 hours a week of ABA therapy that was ultimately successful for their child…but also talk to an adult with ASD who had ABA back in a time we called it Lovaas and there was no such thing as “errorless learning”. Talk to the retirement aged parent you don’t see because they are trapped in their house on lockdown with their adult child who is severely affected with Autism, violent, self injurious and an elopement risk but there is no funding to place them in a safe environment. Then go talk to the Autistic adult who wants people to accept that people first language is harmful and ASD is not something to cure. Ask them all to talk about a time they needed to advocate for themselves. And listen closely. Self preservation and love are both innate.
It’s Autism Awareness month. Let’s raise the RIGHT kind of awareness shall we? We can be a united front even when we have our own agendas. He HAVE to be a united front even when we have our own agendas. The future as society as a whole is depending on it…..