I See You. Happy Mother’s Day

 

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Who gets to be a mother?  There is no one way to become a mother.  There is no one way to be a mother.

For the ones who get to hear “Happy Mother’s Day!” and the ones who no longer do.

The Mothers who wake this morning to a day like any other, cleaning messes, refereeing scuffles, and bedding down cherub faced urchins who cannot read a calendar yet.

The Mothers who rise up in their beds this morning to be greeted by tiny sticky fingers holding a tray of homemade cards, burned toast and cereal with too much milk.

The Mothers who must work today away from their babies to make sure there is food on the table.

The Mothers who sit in their homes holding folded flags and photographs, cardless and without bouquets and understanding the kind of sacrifice most cannot comprehend.

The Mothers who wake this morning to their nests being full for the day and swell with pride and calm inhabiting space next to them in their church pews for this one Sunday.

The Mothers who have been up since 3 am bouncing colicky infants on their hip and have lost track of days to remember it is even their special day.

The Mothers who may never hear the words “I love you”, but instead know that scripted lines from Barney mean the same thing.

To the Mothers who are surrounded by children and grandchildren…nieces and nephews, whose faces are those of strangers and quietly asking where their own mothers are.

To the Mothers who wear their hearts and heavenly babies in lockets around their necks.

To the Mothers whose gardens held no water.

To the Mothers who were called by their first names, “aunt” or met their children well into adulthood.

To the Mothers who lock themselves in the bathroom from time to time in tears wondering if they can keep mothering.

To the Mothers who prayed, and saved and traveled the globe to find their children and brought them home.

To the Mothers wondering if this will be their last Mothers Day with their children.  To the Mothers wondering if this will be the last mother’s Day with their own mothers.

To the Mothers who promised they would upset the lineage of abuse or addiction for their own children, and they did.

To all the Mothers who asked for their children’s forgiveness.  To the Mothers whose children did.

For all the Mothers. I see you all.  Happy Mother’s Day from one imperfect mother to the whole village.

 

 

It’s Not Your Mother’s Mother’s Day

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(originally posted Mother’s Day 2016)

To my children on Mother’s Day:

You did not ask to be born.  You did not ask to walk this earth and you certainly did not create your own realities and struggles….at least not yet.  You did not get to choose me as a mother.  I can guide you in ways that I think will ease your journey but ultimately your external successes and failures will be YOUR successes and failures.  You get to have those on your own and I will rejoice and celebrate and swell with pride as if I created those monumental moments but I do not get to take credit for those.  I will feel guilt or shame or sadness in your failings or perhaps I will distance myself from them for those same reasons, but ultimately I don’t get to take credit for those either.   Whatever respect or love you have for me through each stage of your lives is created, taught and fueled by me and  while those things feel like an expectation when it comes to a mother, in every other situation those things are earned….I will assure you it is the same in our case. It is not my expectation that you celebrate me today.  If anything, the onus is on me to celebrate you.  You made me a mother and by proxy after 35  years I was given the gift of the ability to feel love unconditionally.  I don’t choose to love you…..I have no choice.  What I do with that part is up to me. You do not owe me for being attentive to your needs, by making you a priority.  That is my contract with you regardless of circumstance.

So on this Mother’s Day, I celebrate you both.   The loves of my life.  May you:

–Never feel as if your existence was a burden to me.

–Always feel like a joyful priority, even when I have forgotten to appreciate that myself

–Recognize that you are separate from me….that my sadness is not your sadness…my expectations should not be your expectations, my disappointments are not your disappointments.  If I am doing this right, I will not feel like your obligation.

–Know that in my humanity the above might not feel that way because nothing makes me feel more joy than your joy….nothing makes me feel more worry than your worry…and unfortunately there is not much I can to about that.

–Never feel less because I acknowledge your differences.

–Always feel safe in telling me your thoughts and ideas no matter what.

–Know that when I don’t understand your needs that you may not be able to change that but you can ask me for more patience

–Always feel the love and respect I have for you and I hope that I have done my job in teaching you how to have the wisdom to distinguish and create healthy distance as you grow when others are not treating you with love and respect who should be.  Including me.

–Know that if I am feeling selfish or if I cannot manage something when it comes to you I will protect you from that by being honest so you never misunderstand my intentions.

If I am raising you right, for me every day should feel like the holiday we are told is Mother’s Day.  But for today, I celebrate and thank you for being given the privilege of being your Mom. Now let’s get to the Zoo.

xoxox

 

 

 

Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

white-1184178_1280I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Since she passed him in the exact same spot  for three years her curiosity finally got the best of her . You can see it here.  He was thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?  Remember the Man-With-The-Golden-Voice several years ago who hung out by the highway and  became a media sensation?  I passed him…sometimes twice a day on the way to my child’s school.  There he was–all wild haired and looking strung out. And then there he was on Dr. Phil with a Cliff Huxtable sweater and a haircut.  A former radio announcer who succumbed to addiction.  We were all cheering him on–he had a Golden Voice and would contribute to society with those gilded vocal chords.  And my, wasn’t he handsome with that haircut?  He could practically be someone we knew!

I digress. This woman from Texas stopped to ask this man why he was always in the same spot all day, every day.  He told her he was waiting for his mother because that is where she left him.

He was waiting for his mother. Right where she told him to wait for her. 

To be sure, his mother was not coming back and this man  struggled with mental illness.  But maybe she really did leave him right there the last time he saw her.  This could very easily be my beautiful boy.

Let me give you some background on this….

What you might not know is that he didn’t suffer from mental illness…that came later in life.  He also had Autism with a speech disorder and a learning disability.  He was raised in an affluent suburb with the best schools in the state but they failed to teach him to read.  This man’s parents were older when he was born, were highly educated, had good jobs and didn’t retire until they were forced to.  His grandparents were all elderly and required care themselves. His father had excellent medical benefits at work that covered most of his care and his mother was extremely resourceful and was able to access everything available from funding to therapies to alternative treatments.  This man’s parents saved as much as they could and because of his unique needs, his mother could not work full-time.  Care for a disabled child is a commodity.  In childhood, the man’s parents tried to give him the most enriching life possible with as much exposure socially as they could.  He found so much joy in being out in public going to sporting events, concerts, religious congregation events and festivals. His parents looked at spending money on these activities as investments since staying at home did not provide him with any social opportunities at all.  After he was about four years old, there were no more parties or play dates or neighborhood shenannegans. His parents were his best friends and gave him a life outside of the house.

This man was once an exceptionally adorable little boy and it was so easy for him to get attention and love almost anywhere he went.  That is, all the way up until adolescence.  It became confusing to him when people didn’t respond in the same way when he would wave at them and say “hey!” or approach their table in a restaurant just to say hello.  His parents put off making a trust because the idea of appointing a guardian was so daunting.  How do you ask someone to make sure your child is OK for the rest of THEIR lives?  How do you ask them to make sure that child has a guardian beyond THEIR lives as well?  Given his parents became increasingly socially isolated as he grew older, it was hard for them to even consider options.  So they just didn’t and hoped for the best.

The boy grew into a man and it was important to his parents that he felt like one. They insisted he held a job and helped him find work wherever they could.  As they grew older, their health issues became too much for them to be able to continue to change diapers or physically help move the man to safety when he got upset and ran in the direction of danger.  The man’s health care waiver ran out when he turned 22.  Reluctantly, his parents dipped into their accounts for his care and in less than 5 years, they ran through their life savings. The same amount of money that would have been considered sufficient in any other situation in old age.  The parents did everything right.  The man worked hard his whole life to be the most contributing member of society his parents could push him to be. And yet…..one day on the way to a doctor appointment, the mother asked the man to wait outside.  She was afraid that if the doctor saw she was trying to care for an adult with a disability he would be taken away…taken away to live in a substandard long term care facility…one that was short staffed where he would be living with strangers. The Medicaid cap would release him to the streets when it ran out. Well…frankly, it was better to let him wait outside, she must have thought.  That is until at that doctor appointment he determined she needed surgery immediately because all the nausea she was having recently turned out to be repeated heart attacks due to a blocked artery. Only she didn’t make it in time to let anyone know her beautiful boy was waiting on the curb for her.

And there he sat for 3 years.  Wandering for food. Wandering for help, but due to his speech disorder and illiteracy, there was no one who understood him enough to know who he was or what he was looking for.  He looked crazy. He looked drunk.  He sat and wandered until that nice lady finally stopped to ask him who he was.

This could be my son.  My beautiful boy.  The kiddo who is 11 years old right now. Of course, it is not.  I actually know nothing about this man from Texas or his background.  But I certainly can imagine this very real scenario.  It is a scenario that keeps me up at night with the exception of the kindly stranger and the happy ending on channel 10.  For those of you who believe people who live off the system have made their lot in life or that they are owed nothing…is this who you picture when you see the guy sitting on the side of the road?   Because that guy may have once been my beautiful boy….your white, upper middle class neighbor’s child who you thought was a ‘cool little dude’.  Where do you think those kids go when they have no one? (and if one more affluent person who knows my child says “well….THAT’S different” be prepared to introduce me to someone else you know milking the system.  Go ahead…I’ll wait right here.).  Because you personally know me and because you personally know him and we kind of look like you  does not make him more deserving than the dirty adult sitting on the curb you think you have never seen before.  That guy that is owed nothing. You just don’t recognize him because you keep your eyes on the road.

I don’t think…I KNOW that one day I will die. Unless I sell my soul to the devil, I am not sure how I will manage to work a  steady job through my own elderly death that will happen AFTER his . I keep reading how his care should all be on me.  And it most certainly is.  And my husband and I have done everything we are supposed to do.

Today.  Call your congress people TODAY.

Don’t know who they are?  Click here to get the name and contact of your National/State/Local representatives.  Don’t know what to say?  Pick out the parts of this article that spoke to you the most and read it to them.  Remind them that NO ONE is a throw away person….not any of their constituents.  Not even the ones that cannot vote.

Stop what is happening with the repeal of ACA.  $800 BILLION cuts in Medicaid are going to be made for tax cuts to people who don’t really need those tax cuts. Medicaid will come in block grants to states with caps….and those caps come quick.  Where will my baby go when he meets his cap?  1 out of every 6 children have a disability and many of them depend on their families to ensure the bulk of their care and with Medicaid to help where they cannot. I have split my time between working and paying taxes to the country I am asking to help and also providing his care.  What happens when my child is not in school and needs full time care?   How do you keep a job and ensure your commitment as a tax payer while also fulfilling your duty as a parent of a disabled child?  If I don’t have a job, he is a freeloader.  If I do have a job, I am a freeloader AND negligent. The circular logic for the reduction of assistance and subsidies is just that ridiculous.

I am glad to hear that man from Texas is doing well.  I am glad there are middle-class individual citizens out there who might stop their cars to find out how they can help.  This, however should not be my son’s disability policy. His life is worth more than a sound byte on the local news.

Autism Awareness Month: Y is for Youth

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The sticky wicket of Autism. There are some moments I feel particularly lucky for autism. Those moments I watch slip away from my friends who’s babes with bountiful curls framing cherub faces ask for the straightening iron ……who have their gossamer wings clipped to keep their feet firmly planted on the ground….who no longer rub the wonder of dreams deeper into their eyes when they are sleepy….I would imagine it’s the bittersweet joy of having children…watching the transformation from innocent Angels to inhabitors of earth. I get to cavort with an angel for longer. I still get to hear a gasp followed by “look mommy…moon!”. I still get warm snuggly visits at 3AM. Bubbles are still magical. Raffi is still the only fully grown man who can sing wheels on the bus and get a rousing sing a long at our breakfast table. A2 can still do interpretive dance in the aisle at the synagogue during prayer while onlookers smile and nod as if it is part of the service. But it’s not for much longer….as those other children blossom from midlings to Ivy League applicants….A2 will likely still ask for The Muppets or try to squeeze himself onto a tricycle or squeal “go faster daddy!” as he coasts down a hill on a tandem bike….the promise of youth in the body of an adult where looks from strangers will fade from smiles when asked “what’s your name”. It’s not natural to pray you outlive your child….but we both agree as long as there are songs to be sung, dances to be danced and bubbles to blown we will move with him and try to always see the wonder of his world.

Autism Awareness Month. X is for X-Ray.

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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….)

Autism Awareness Month. V is for Village

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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.

Autism Awareness Month. W is for What It’s Like

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W is for What It’s Like

“There is grandeur in this view of life…..from so simple a beginning endless forms most beautiful and most wonderful have been and are being evolved”On the Origin of Species, Charles Darwin.

A few years ago I attended the funeral of a friend who suffered and died much too young. He was a scientist-a biologist, an activist, a researcher who was respected in his field and likely the smartest person I knew. He was also pedantic and opinionated with a biting but funny sense of humor. This combination engaged even the most simple of us but most of his friends were equally as interesting and I got to numbly stand in a room in Vermont in the dead of winter surrounded by them. “What’s it like?” a friend of his asked me…”having a child with Autism?” For a moment I just thought I was not in the mindset to answer that question but quickly realized I could NOT answer because in all the years I’d not only never been asked that but also never considered it either. It was the kindest thing anything had ever asked me about A2 and perhaps it was the somber tone of the day that rendered me without speech (which if you know me well does not happen often) or maybe I had always been so caught up in the action oriented nature of having a young child with autism that to contemplate that would stop me in my tracks and make me crumble….or perhaps in the moment I felt guilty for even thinking I would crumble and considered myself so lucky to still have those I loved around me regardless of circumstance while my best friend was grieving the loss of his partner……so I excused myself instead. What I have decided over the years is that it is a bit like A2 contemplating this fountain. It is weird and fascinating and wonderful and I have no idea how it really works or how it got there. I notice every single droplet from the ones that predictably slide down the posts to the ones that spit out to collectively leave me standing in a cold puddle over time that leave my toes numb without notice until its too late. There is no warning when the water will turn to an exciting spout of beauty creating a soft rain and visible rainbow or when it will create bursts of rainy arches that I cannot immediately escape leaving me far more drenched and colder than I want to be and on opposite sides of the fountain from whomever was standing near me. So Trevor…..that is what it is like……Thank you for asking

Autism Awareness Month. T is for Teachers and Therapists

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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.Featured Image -- 1500

Autism Awareness Month. O is for Obstinate.

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O is for Obstinate

All kids can be defiant. All kids can be persistent. Most can be both at one time or another…..however the persistence of a person with Autism can sometimes be far outside typical willfulness of even the most obstinate of kiddos. Most of this stems from intense need for familiarity, order and sameness of routine. This rigidity is part of the diagnostic criteria of Autism Spectrum Disorders. Sometimes I have no idea what will trigger A2 into a 3 hour long battle of wills. What can be a 5 minute routine one day can take 2 hours the next even when he knows that routine ends in something he enjoys. A1…no matter how much punishment, berating or time outs he got, he would get right back up and do the same thing over again. One summer I decided to ‘put my foot down’ and send him to the time out step after every single infraction.  No warnings.  That should teach him!  After about a week of this, there was a day that I had sent him 17 times all before my husband got home from work. And he went willingly. Every. Single. Time. Something was very wrong and thankfully I had a moment of clarity.  I got a clear cup, drew some lines across it and found a bag of marbles.  Every time I caught him doing the right thing, I would throw a marble in the cup with the caveat that he couldn’t point out to me how good he was being. Unless he hurt someone (which he never did), there was no more time out step. Every time we filled the cup to a line, he got to pick what we did next in our day.  If we got to the top (by the end of the day), he could get a dessert after dinner.

Just. Like. That. Everything was different. He would listen the first time and look out of the corner of his eye to see if I was digging for a marble. He got double marbles if he initiated social interactions. Before long, we were engaged in pretend play in the basement.

I had someone close ask “Don’t you think it might not be autism?  Don’t you think it is could be his personality?”.

“Well, ” I indulged “if everything we do serves a function, what function do you think his behavior served that week?”  Without much hesitation, she drew her hand up as if she was grabbing something and said “To have a ‘gotcha’ moment!” I thought for a moment.  “What 4 year-old would rather sit on a step over and over, day after day instead of playing just to get under his mother’s skin? Isn’t a week long enough to learn that without the behavior increasing?”  A four-year-old.  Clinically, that would be a much, much bigger issue than autism.

Before that, I used to joke about how even a dog can learn to salivate to the sound of a bell when paired with food over time, yet I could not get my child to understand how his behavior had anything to do with the consequence he would receive. It’s one of the most bewildering and frustrating parts of parenting because regular consequences do not work. Though A2 may connect consequence to behavior in the moment, the pathology outweighs all and it is likely that he may not learn from his behavior for the next time.  A2’s Childhood Apraxia of Speech required us to do drill work with cards for sounds and words over and over.  Did we create some of this rigidity with him because of this?  Probably.  Did I have any idea that would be possible then?  No. But the trade off was that he learned to try to speak and can make some needs known so that people other than me and my husband understand.  Was it worth it?  As a parent with limited understanding and resources  I would have to say “yes”, because he displayed rigidity before that.  Even as I add to this blog post from the original version written two years ago, I realize how much I have learned to even question if this was possible.  We have lots to continue to learn.

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

Running through Water

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F is for Food

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

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