Sensory differences are a common symptom of autism. Often kids on the spectrum can become overwhelmed by these differences. A1 tells me that a public toilet flushing sounds like a bomb going off and for several years he avoided public restrooms. A2 flaps his arms and locks out his knees whenever he is filled with anxiety. Kind of his virtual rocking chair….or else he is just hoping to fly away from the dentist/barking dog/hand dryer. As autism-folk we try to build awareness by creating overwhelming scenarios to get NTs (neurotypicals–yes, we have a name for you) to sympathize the plight of the kid flicking his fingers in front of his face as a way to stop having his eyes taking a million pictures at once or the kid who is pacing because he can’t tell where his body is in space. But sometimes, I am fairly certain that some of those sensory integration differences are not experienced in a negative way and sometimes there are common things that just look, sound or feel like something not of this world. If I could only take an x-ray of A2s little mind and see what he could for 10 seconds. (Feel free to smile at this picture….)
Originally published 4/27/17
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.
While it is understandable why a parent like myself with a child with significant disabilities within a public education and governmental system would feel overwhelmed by all of the details, the truth is I felt that way about political systems before I even had children. I am very Gestalt and particularly nervous when it comes to leaving out a detail. The Whole Is A Sum Of Its Parts is most assuredly how I have always seen the world. If I miss a piece, I promise I won’t understand the big picture. Often the bigger problem is knowing whether I have missed a piece, so I comb and comb for those pieces until I end in a pile of crumbs. And then? Well…..once I sweep up…watch out.
Our collective current public educational system is fraught with problems that overwhelm me to even consider how they can be overcome in a fair and meaningful way.
And to be clear, this does not mean our educators are at the top of the problem list. I would challenge anyone who believes this is the case to go spend one year as an educator in even a high performing suburban school district. The financial, legal, logistical and social constraints that exist would send a person without the passion to make a difference in the the lives of kids running to do almost anything else. The issues that exist in public education are systemic in nature. They are systemic but not static so I have believed it possible to slowly turn the ship around. Fully funding IDEA would be a great start…but that is the thing about getting overwhelmed by details. Out of survival, you hone in on what will have the most impact on your own world to create your own big picture.
It would be easy to turn this into a 5000 word article and focus on all the talking points about why public education is failing everyone and also on all the fundamentally terrific things public education is doing right. But focusing on those things is the parlor trick we all seem to be falling for these days. The guy with the horns and the trident is awfully entertaining with his sleight of hand while we’re busy, a well heeled woman sitting before the Senate is making plans to create a systemic and fundamentally flawed plan to oppress and contain the most vulnerable children.
There is no time to yell about unions or standardized testing or who we are not listening to when we don’t have an adequate solution and you don’t have the details to understand why they are there in the first place. It’s like slapping yourself in the face.
Yesterday at the Senate hearing for confirmation of Secretary of Education, opponents of Betsy DeVos were alarmed at just how unqualified she appears to be for this position as evident by her lack of knowledge of crucial educational and fiscal details and seeming inability to directly answer questions. Mrs. DeVos struggled in the brief periods of questioning to give details about how she will ensure/protect/educate. I am not so certain that having someone who understands every detail of public education is actually necessary or even preferable.
However, I do not believe that Betsy DeVos was one bit “confused” about the Individuals with Disabilities Education Act being federal law and not something that the states decide. I do not believe that she doesn’t understand the difference between proficiency and progress. I do not believe that she was having trouble answering questions but rather she answered those questions loud and clear.
- Should all schools, public, private and charter have EQUAL accountability standards when accepting taxpayer funding?
- Do you think that all schools receiving federal dollars should have to adhere to the Individuals with Disabilities Education Act?
- Should schools receiving government funding have to have the same reporting systems for bullying and harassment?
- Will you enforce the law for disabled children should the charters go into place and they might be accepted at the charter?
- Will you defund or privatize public school?
Instead, Mrs. DeVos let those members of the Senate know how happy she would be to make these discussion points in the future.
No…. I don’t think Betsy DeVos was confused. I think she doesn’t care, because in her world the devil is in THOSE details and it appears sometimes the devil comes in the form of anyone different or disadvantaged.
Her plan it seems is to create selective schools that she won’t state whether they will adhere to the federal civil rights protection for disabled students or potentially even for just their protection at all. Over time, disabled students and socially/economically disadvantaged students, students with behavioral issues are going to once again be segregated due to selective admissions processes, “waiting lists” differences in educational accountability and financial discrepancies between those who can afford the gap in tuition not covered by a voucher. There will be no such thing as inclusion in schools it will vanish with the details.
For me, this isn’t a matter of lack of understanding or even sour grapes. I live in a state where there is a “scholarship” program available for students identified with a disability which we used for A2 through pre-k and kindergarten. Given his Autism diagnosis, he qualified for (at the time) a $20,000 voucher through the state board of education to use with a scholarship provider. Our district was still responsible for writing his IEP so we would meet annually to update. We found an excellent match for him at a local private, not-for-profit Autism school and in just three months I was pleased to show our district the tight data tracking his improvements.
Short of realizing he wasn’t getting everything he needed in public school, overall, we had a positive experience using this system because the stars were aligned. A kid happened to move away opening a spot in the classroom, otherwise A2 would have been on a waiting list. Our district did not transport him so I was unable to work much so I could take him the 20 mile round trip jaunts twice a day. Things were very tight for awhile because we were still responsible for $8000 a year out of pocket toward the tuition.
The biggest trade off? By accepting the scholarship, we relinquished our rights to FAPE (Free and Appropriate Public Education). In other words our “school choices” were:
- Stay put and spend thousands on attorneys to try to prove he was not getting an appropriate education (as evidenced by the amount of progress he made with a specialized ABA program)–but in the meantime, if we filed due process based on the law, he would have had to “stay put” until a resolution. Which could be years.
- Find another school that could accept him, provide our own transportation, find $24,000 for three years of out of pocket expenses AND hope he gets what he needs because the private school technically does not have to follow the IEP. Nor technically are there any repercussions for not meeting his needs.
Choice? Like the Sophie’s Choice of the outcome of my child’s future. They both sucked. We only had a brief period of time to harness the little spongy brain of his. We were very, very lucky it worked out the way it did. But we were also very, very lucky because we are upper middle class white, intact suburban family with one paycheck that covered everything and a kiddo who did not present with behaviors too difficult to handle. We were very, very lucky because the school was pretty great at what they did with a caring team to boot. I am not against the idea of a voucher system and school choice, but in order for it truly to be choice, the playing field must be appropriately leveled. Otherwise, it is only really a choice for some.
Betsy DeVos wants to turn this ship around, but there is a huge iceberg in the way and only enough lifeboats for the privileged and the able-bodied leaving everyone else, including my beautiful boy to go down with the ship. Our educational system needs fixing, no doubt…but first do no harm.
How we got to December already is beyond me. I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.
I am a working mom with a 5th grader and a 7th grader. In the last 7 years, I have:
- been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
- planned 9 Halloween classroom parties and 10 winter holiday class parties.
- baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
- been a chaperone at EVERY Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
- volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
- sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
- stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days
I think you get the picture. An estimated 2000-2200 hours of my time since 2009. Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no, I do not want a cookie, a prize or personal recognition from anyone. Other than to say this….
I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.
This is not an unusual phenomenon. I had a conversation with a special ed coordinator in another school district about this once. She also “lives in the field” like I do having a couple of kids on IEPs. I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other). Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.
I didn’t start off this way. I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom. While the 1970s were not known for tales of excellence in parenting, as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.
Then Autism came along and and early on I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity. My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”, he exclaimed after I asked him where he would like to have his party. Since he had not been invited to any birthday parties since starting school, I wrote several school staff asking if they could help with names.
The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends. She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class. And that was it.
I was perplexed. She did know my child had a severe communication disorder, right? I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.
No response. So after a week, I wrote again but with a much more explicit message.
My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number. That’s how typical children do that. We have programed the following into his talker (speech generating device):
Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.
(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own. So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)
I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs. When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals. We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board. Volunteering for the purpose of learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity. I am lucky to have this as an option, but many…if not most working parents of special needs kids do not. The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.
So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are. Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.
**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning. Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue. Stay tuned…if you are in this dilemma for your child!
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.
It is time again for the November Thankful Challenge on social media. For 30 days people publicly declare the things in their lives for which they are grateful. As a therapist, I can tell you it’s an excellent daily 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. 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?
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 have a roof over your head, access to clean water, some kind of education and likely one person in your life who cares when your birthday is. Those are things we easily take for granted.
This doesn’t always feel so much like gratitude in comparison in our rich-kids-of-Instagram kind of society. Things like rampant poverty in the streets or dysentery are not infused in our every day life. Yet as special needs parents or as disabled people, it feels like we are expected to display this type of gratitude in circumstances in moments when it feels just 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 rarely because of anything my child has done or his disability itself. It is more about the circumstances around him prohibiting understanding, access, equality or equity.
Thus the rub of the special needs parent and the expression of gratitude toward professionals who serve their child.
If someone 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 the percentage who would answer ‘no’ would shrink in proportion to year asked.
In the last several years, regardless of how many holiday gifts, number of hours I volunteer, amount of money I donate, number of thank-you’s doled out, at this point I am still going to be seen as a wistful pariah to those whom I ask more.
As A2 ages and the disparity in needs between he and his peers grow, so does the need for advocacy.
There is a pervasive belief system which 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.
- 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. As parents, we want to always feel and show gratitude to those whom we entrust our children, but when trust is bent, even a little, it dulls the surface.
A couple years ago, during a conversation at school, a team member let me know just how stinkin’ cute A2 was 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!”
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. It is kind to find the strength. However, very soon, that go-to strength 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. ATeam, you GOTTA focus on the positives. You just gotta.”
Do I though?
Focusing on the positives is actually WHY I have to advocate and ask for more. It is not for the purpose of making sure other people can see my gratitude. 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 IEP 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. Unfortunately when faced with this frustrating reality, as a mother I don’t have enough energy left over to make people feel good. I used that energy up in the front end not realizing what lie ahead.
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. There is nothing for which I could be more grateful, just like any parent.
But I understand.
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.
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…..
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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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.
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
There are some days that my heart breaks selfishly a bit. Days like today. As A2 gets older there really are no play dates. While kids are generally kind, there are limits to their patience. It’s hard to figure out how to play with another kid who wants to stand at the bottom of the water slide flapping rather than going down. His peers are now preteens and the adults that are close by interpreting for him, ensuring safety and cueing socially reciprocal behavior are going to inhibit their own wing stretching. So today, as I sat entering in my second hour in direct sun making sure my guy didn’t keep going past the “do not pass” safety barrier at the waterslide, I couldn’t help but notice the world around us. I had nothing else to do but try to clear my mind of things that poke at my side and wake me breathless in the middle of the night that were now tugging at the straps of my mom-suit with sunburned shoulders. I see the young women in their bikinis, laughing and hanging off of tattooed boyfriends and remembered a time where wondering if my thighs were firm enough or if my mascara was running were my biggest concerns. And at the time they really did feel like big concerns. There are days….just like every other chubby middle aged mom…I just miss my youth. I watch other moms read their books and drink stealthy mojitos next to the pool as their kids run to them at rest time asking for $5 for a hot pretzel. The lifeguards are there to protect theirs while I stand knee deep in freezing water wondering what would happen if I tried to do the same. There are days….like every other mom of little ones…. I wish I could enjoy a day off near a pool where I didn’t feel like my purpose was to make certain my kid didn’t die. I see the moms with toddlers and infants on changing tables and laugh as I remember being in the same predicament with a wet, slippery cherub in a soaking wet swimmy full of poop and trying to carefully slide it down over a squirmy tushy not realizing the sides rip off for easy disposal. Today I am trying to find a dry floor free of clumpy toilet paper wads to change an 11-year-old in a soiled swimmy and keep my fingers crossed that this won’t be the last year I can squeeze him into a size large Huggies with Nemo on the back. There are days….like every mom of infants…I just wish we were out of the diaper stage.
Once I shook the delirium of the midday sun and made my own mojito at home I felt less like I was crawling toward a mirage in the desert only to be disappointed by more sand. I feel conflicted by my own selfishness. I know the bottom line is if he is still oblivious to his differences and is still filled with joy doing what he likes to do whether it suits me or not then we are still golden. And yet….I can feel like I have received a sucker punch to the gut when I watch pubescent girls walk quickly in cliques past him whispering and giggling. I don’t know if my child worries about the same things I do or if he has crushes on girls or if he sometimes grieves his differences. I hope not. That way I can keep my selfishness where it belongs…to myself.
But that’s the thing. Don’t ALL moms go through this? We have a sacred ground that feels like it is being broken if we say it out loud or admit to having a bad mom day. Special Needs bad mom days and Typical bad mom days have a different script but definitely the same plot. No. I will never worry about my kid having a psycho girlfriend. I will never worry about my child’s heartbreak of being brushed off and losing social status. I will never worry that I did not raise him with morals or respect for adults. I will never worry about whether or not weed will be his gateway drug to heroin. And those things are equally as important even though there are days I would rather worry about those things. Somehow it became not ok to admit to worry or heartbreak or disappointment for fear of being seen that we somehow don’t appreciate our children. I hesitate to share on these days that I must sit quietly for a little too long and think about things a little too much. I am weary of feeling somehow missing our old lives or having a twinge of disappointment over “what could have been” cannot possibly coexist with loving our children with all our souls or appreciating their uniqueness in all their flappy, pool water drinking ways. See…because you know what I miss too some days? My flat stomach with a belly ring that didn’t look like it was a way to deflate my abdomen. I miss not checking moles and worrying about sun cancer. I miss not having to hire a crane to hoist my chest up in a bathing suit. I miss drinking beer all afternoon in the sun and flirting. I miss working 40 hours a week and actually being bored in the evening when I couldn’t find someone to go to the coffeehouse and play scrabble or see some local guy playing acoustic somewhere. And I dare anyone reading this to NOT feel like they miss those things too sometimes and that they too would consider trading their situation in to go back for just one day…..and then realize there would be no way in hell. Because we will never be the same…and for that the world will never be the same and that is the backward legacy that our kids give to us….as we gave to our parents.
I often wonder what kind of mom I would be in an alternate universe….and feel very selfish on the sad days. But ultimately…..autism or not…..I really don’t think I’d feel different from any other mom.