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Gravity Wins: Journal Entries of Autism & the Heartache of Residential Placement

Inas
Admittance Day

By:  Inas Younis

Its takes strength to hold on, but it takes even more strength to let go.  But I am a mother and I could only do what came naturally,  and so I held on.    I held on as tight as I could without hurting him.      I held him when he tried to jump out of moving cars.  I held him when  he tried to attack the neighbors.  I held him when he tried run out into streets.   I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go.  Whoever said mothers are strong,  did not really understand the meaning of strength. 

But now the time has come.   Blinded by tears,  and  deafened by an  inner voice which keeps reminding me that mothers never give up on their children, I am going to let go.  But before I do,  I must throw myself  before a jury of my peers and ask for their forgiveness.   I know what you are thinking,  only God can forgive me.   But I don’t need forgiveness from God,  for he has been on and by my side since day one.  He was there while I screamed and cursed at the heavens for making my son autistic and epileptic.   He was there when I begged  for a miracle every day for ten years straight.  He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure.  He was there when I had my first panic attack.  He was there then, and he is here now.  I don’t need his forgiveness, for there is no sin in coping.   And I do not need forgiveness from my fellow man,  who was completely oblivious during  the beatings,  the fecal smearing,  the screaming,  the property destruction,  the insanity and horrors of my life which I hid from their  innocent eyes and ignorant hearts.    No,  what  I need  in order to let go,  is forgiveness from a jury of my peers. A jury of mothers who have  suffered some measure of the horrors I have for the last sixteen years.  For only  they can understand,  and not because they have been through it,  but because many of them  are still going through it.  They are my heroes, and after you hear my story, they will be your heroes too. 

So please allow me to plead my case ,  starting with the most obvious defense.   I tried everything!  

Was I aggressive enough with his therapy, his special diets,  his medications, you ask?  Well let me see if I can remember, because as most of us mothers with special needs children know,  we all suffer from  a bit of amnesia.  It’s  our brain’s way of dealing with trauma.  I think there is an acronym for it called  PTSD.  The world of autism is full of acronyms.  There is GFCF, SCD,  ABA,  ASD,  IDEA,  ESY,  and my all time  favorite,  WTF.   But luckily,   I kept very detailed journals, so no worries.    Of course at the time,   I kept them because I was trying to decode the mystery of  autism and in my case severe autism.  I micromanaged his every bite of food, supplements, medications, and  therapy in an effort to isolate cause and effect and determine  patterns of  behavior.  But no patterns emerged except for one;  I was going crazy.   I submit to the jury the following Journal entries. 

October 2003:   I am in autism hell,  which right now means hiding out in my bathroom while the devil has his way with my son.   According to my notes  the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil.   Therefore,  no more orange flavored fish oil.  Note to self: use alternate fish oil.  To do list: email the following fish oil companies until I find the purest fish oil known to man. 

June 2004:   I am at the bottom of empty,  hopeless,  but doing whatever is necessary to survive.  Where have I gone wrong?!  I am knee deep in  shit,  literally speaking,  because of all the accidents he is having.  WTF. Tomorrow, diet revaluation.  Take more copious notes. Don’t skip supplements! You are a miserable mother.  Get it together!! 

September 2007: Dear God,  There are mothers watching their children get blown up  by land mines.  And all I have to deal with is an aggressive,  non verbal child with bowl issues.   I seriously need a dose of perspective, and a double shot (of espresso).  Note to self: Stay away from drugs and alcohol.     

Dear  God,   what the hell!!  I spent all day praying.  My forehead has been glued to this cheap carpet begging for some sign of your mercy and you send two  Jehovah’s witnesses to  my door.  Is this some kind of cosmic joke!  Anything, anyone,  any denomination,  any religion, a Girl Scout with cookies would have been more merciful and meaningful than two teenage boys with starchy white shirts.   Are you testing me?   If you insist on this kingdom of heaven, then hold the elevator,  cause I wanna go down! 

Dear Diary, 2012:  Autism hell take two.  We had a “good” week, then wham bam, he went postal.    It's going to be okay, because it’s already a prolonged case of not okay. There is no place lower to go.   I am already in hell,  and its cold down here.  

Dear God,  cure my son.  Thanks in advance.

These are just a few of  my many journal entries.   Yes I was going crazy.  I was a mother, and that’s what mother’s do when they are forced to watch their children suffer.  They start to lose it. 

Before I go into the many other ways and means I employed to help my son.  I need to be clear to the many faithful members of my jury that I tried the God route.  The dark night of my soul came and went.  I had my crisis of faith.  I did heed the advice of every denomination and religion, mainly my own.  I went through the four stages of grief (I skipped acceptance) and the five stages of spiritual growth.   And every time someone told  me to find Jesus I had a blasphemous urge to say.  Find Jesus?!  I am being crucified every day on the alter of  altruism and  sacrifice.   I suffer everyday in total futility with nothing to show for it,   and  for sins I did not commit.   I suffer and I do it without taking vengeance  on nature or God or my fellow man.  Find Christ?  I am Christ!    

That’s what I am tempted to say, but I do not say it for fear that  I really might get  crucified by my Muslim community.  They do not take kindly to such irreverence.   I am confessing  all this because  I ask that you refrain from advising me to turn to God.     I did turn  to God and he said that no one is immune to the laws of nature.   He said that if it were his design that we should suffer, he would not have equipped mankind with a mind to circumvent disease through the application of science.  Bad things happen to good people,   because it’s the good people who will make things happen.  Necessity is the mother of invention for some,  and superstition for others.  Nature wins, gravity wins,  you lose! 

And so I decided to abandon superstition, and embrace logic and science, even if it had yet to find a cure.   But my effort to think outside the science  box while sitting in it would backfire.   A mind will not permit contradictions to comfortably co- exist because it was confined by the laws of logic.  So if I wanted to find a place where no boundaries to my delusional thinking existed, the place to go psychologically was not a thinking place, but a feeling one.    That is why God resides  in the infinite space of the human heart rather than the finite space of intellect.   I needed God, but not to perform a miracle and cure my son,  but to help me to maintain the delusion that I can do it. So I stopped turning inward and started reaching out,  not just to science , but to other human hearts.

Dear Doctor,  I am desperate.  I will do anything.  HELP! Any guidance you can offer would be greatly appreciated. 

I went from begging God,  to begging doctors,  to begging other parents.   I researched constantly.  I was going to find a cure or die.  My eyes started blurring from all the hours I spent researching on the internet.  My fingers ached from texting and emailing on my iphone.   So you can imagine my glee when one day  a parent responded to one of my many emails, offering hope.    

Dear Inas,  I have two sons on the spectrum who have lost their diagnosis.  Would you like to come over and visit with us? 

I drove up a small dirt road as two perfectly healthy boys excitedly ran up to my car.  They urged me to come inside. I hesitated,  because my son was in the car and I was afraid he  might hurt them or destroy something in their home.   A heavy set woman came out reassuringly waving me to come in.  “ You will get no contempt from me” she said.  “Bring him in.”  My son and I walked in and she immediately disarmed him with her loving embrace.  She asked her boys to play with him while we sat down at a small table littered with toys and papers. She was a home schooling mother of five.  Two boys autistic,   now recovered.   She gave me a tour of her home and her kitchen, where vats of coconut oil,  homemade kefir made with raw milk , and fermented vegetables lined the kitchen counters.   I already had my son on a very restrictive special  diet.  But apparently there was  so much more I could do. 

So began my new obsession,  this time with food.  Within six months I had weaned him off all medications,  and had him on a specific carbohydrate diet.   Within one year  we hit a honeymoon period. Something happened.  He started to calm down, seizures stopped.   He was happier and more manageable, which meant less dangerous. 

Dear God,  Thank you.    Exhale for ten seconds, and enjoy the calm before the storm hits.   And it did hit , like a tsunami - hello puberty. 

Along with the demons of puberty came growth,  the physical kind, and seizures, the unpredictable kind.    He was getting heavier and taller and I was shrinking in more ways than one.   And for the first time I realized that if things became any worse,  my  unspoken secret fear might be realized.  I might lose my son to a fate I believed was worse than death.  I might lose him to that obscure,  frightening,  non -entity,  commonly referred to as -  the system. 

So I went into  a panicked state of doing everything to make sure that no one caught wind of what was happening behind my closed doors.  I became the outlet for his OCD, doing whatever he wanted to stave off a meltdown.   I micromanaged his every need.  Slept at the bottom of the stairs to keep him from running away in the middle of the night.  I put locks on the inside of the house.   Took away all  sharp objects.  And resigned myself to a life of isolation. 

But the inevitable was about to happen in spite of my efforts.    That phone call that every parent dreads finally came.  But to me that phone call was not a call to inform me that I was about to lose my son, but that I was about to fail him.   

The  director of his therapy Center,    refused to release him to me.  She said that she could not in good conscience leave him with me and risk my getting seriously injured. So we went from his therapy center straight to an in-patient facility.

I have spent much of my life trying to avoid that very moment.  I  had finally  reached a dead end. My denial had become almost as severe as his autism.  And I suppose I am giving you the sordid details to alleviate my debilitating guilt. 

 But I do  not think I really want to be exonerated,  for  I am guilty as charged.  Maybe what I really want,  is not your forgiveness, but his. 

It will have to be enough that I learned a lot from my experiences.  I learned to scream,  I learned to care,  and I learned not to care.  But most importantly I learned the meaning of love,   the unconditional kind.  One of the happiest moments of my life was after an incident where  my son bit my hand so hard he broke my skin.  I looked at him , and pointing to my bleeding hand, and not expecting a response I asked,  “why  did you do  this!?”  But instead of his usual oblivious demeanor,   he looked me straight in the eye and said in the clearest voice I had ever heard him use and in a tone not unlike that of a typical teenager’s,   “ because I do not like you. ”  All the pain, both physical and emotional melted away, because I had just heard the most coherent full sentence he had ever spoken in his life.  I was so overjoyed that I did not care that my son had just confessed his bitterness towards me.  It was more important to me  that he was able to express himself than whether or not he  liked me. And that is the meaning of a mother’s love.  She loves even when she is not loved.  She gives even if she does not receive.  She lets go even if she wants to hold on. 

  It takes strength to hold on, but it takes even more strength to let go.  Gravity wins.  Let go.

Inas Younis is a freelance journalist and mother of three. Her opinion pieces,  book reviews, and personal essays have been published on various websites and magazines. She was a regular contributor to Autism spectrum magazine.

Comments

Steve

Thanks for posting your story. I'm a man so I won't try and comfort you.

For parents with problems with kids opening the doors on the road it is fairly easy to solve (provided your child is low functioning) in that you have to buy a car with locks you can control up-front. One of the many "soft-costs" of autism.

We also have had problems with our son attacking us in the car while moving. I have not solved that one yet. We thought about buying a kit similar to what is used in police cars but our current vehicles won't fit them. Have also spoken to pet barrier people. I can't remember the brand but I've seen one from a company in the UK that looked pretty solid. Guess getting attacked every so often isn't so bad that we are desperate enough to figure a way to wall off his part of van but if anyone has an idea I'd be happy to hear it.

Would love to hear a follow-up on how the placement is going.

Kapil Khanna

I am reading this article and weeping and also praying to God that come and help my daughter. Without HIM being at my side, I don't know if my wife or I would have the courage to go on. Thanks a bunch from the deepest core of my heart. Stay blessed and may Lord Shiva be with you.

Parveen Mozaffar

Inas, I so admire you. Your courage and your resilience. And always so cheerful even with all you were going through. I had no idea.

Jillba

Inas, I cannot thank you enough for writing this. I read this on Tuesday before starting work and I ended up at work with red and swollen eyes. I could not stop crying. I had to admit that I laughed too when you wrote about the Jehovah's witness at the door. You are so wonderful. I was too emotional to even write a comment here. I felt like you were writing my story (it is so eerily similar to what my son is going through). When it comes to Autism Awareness, this is what the public should see. Our stories never get heard in the mainstream media.

Roger Kulp

What per cent of autism does not respond at all to any treatment or diet?I would be very interested in knowing this.

Inas,would you have been less likely to put your son in residential placement,if he did not attack others,and only did the head banging or self abuse,and property destruction,like I did?I am also a very underweight person with a very small build,who can be easily controlled by force,so this is another difference.

I have mixed feelings about residential placement.I have a fairly serious form of autism,but also a very treatable one,that was not discovered in me until I was 49 years old.It was only discovered a to exist few years earlier,in 2003.Before that no one knew what was going on.I like to say I manage my autism,rather than saying I am recovered.I lived with my mother up until she died.Today is is the second anniversary of her death.My mother worked very hard to keep me out of institutions,and residential placement,starting when I was eleven years old.More than once she had to go to court hearings.As an adult,this was always after I was arrested while wandering,with no idea what I was doing,and temporarily unable to talk.During these times,being picked up by the police was probably the best thing possible for my own safety.

I am in the minority who can say cause and a treatment was found for me,even though it took over forty years.But I was only able to find this cause and treatment,because I lived with my mother up until the end.I am pretty sure I would have either died in a home or institution because of all my medical problems,or ended up on the street,because I would not want anyone telling me how to live.

Residential placement is not for everyone,but I do see where some families would need it.Stick around the autism and DD community long enough,and you hear your share of horror stories.Serious reforms and strong regulation is definitely needed,but first there needs to be greater awareness of just how bad some of these places can be.

Phyllis M.

Dear Inas,

I can relate to some of what you have been through and I hope that you are at peace with yourself because from what I read you are a wonderful mother. Thank you so much for sharing your life with your son.

I pray every day for my son and ask God to heal him of his aggressive behavior and to give my husband and me the strength to help and understand him. His behaviors are like a roller coaster ride going up and down.

I don’t know if God will cure him in this life as I have begged him to but what I do know is that one day I will be with him in eternity and he will be cured of all illness and sadness. He will never hurt physically or mentally again. I will be with my son in a perfect life and I will never let go of him.

Theresa Rogalski

This parent is GUILTY of love in the first degree! Her sentence (I hope!) is a lifetime of peace, love, acceptance and happiness. For that is what she and her son deserve. My thanks for sharing her amazing journey for it is truly so many others journeys, including my families. God bless you.

Jennifer

Sadautismmom-your story happened to me.I went to the doctor the same exact day he tried to jump out of car and he put him on risperdal.The name brand dissolving tablet not the generic crap.I know people have negative things to say about medicating. But this saved his life as well as my sanity.It is NOT a cure but it was definitely a help for self-injury, bolting, sleeping and just calming him down. Weight gain is a side effect.

Tricia Womac

I haven't read anything so profoundly similar to our life with Trey before his placement . You wrote my story, his Dad's story and his brothers story as well as Treys story of Autism. He never said he didn't 't like me but he showed it when spitting at his father and myself. It was after a subdural hematoma from bashing his head thru walls and after a stay in ICU close to killing himself that he was placed. I feel your feels and wept at your prose and journaling. I once through bleach all over his bedroom carpet as the smell of feces penetrated my nose at all times. Thank you so very very much for writing your story so that others can go on. Thank God for the internet and facebook pages to comfort parents if sever/profound and low functioning kids with Autism. Now you/ we can comfort, live and laugh when we can. God bless! Tricia Kohlbeck Womac

ola

Inas, you are truly an amazing human being. I do not have the word to describe how good of a mother you are and I am sure your son will thank you one day for everything you have done for him. Don't ever give up hope :)

Sarah

Inas, thank you for this piece. I wonder what you hope we, the public, would take from this? Is is that there is no hope from biomedical intervention? Is it that there are some cases which are totally hopeless? Yet, your son is able to express himself in full sentences. That's much more than some kids can do.

These decisions are so difficult, and I hope that both you and your son can find some peace.

Teresa Conrick

Inas,

Thank you for you sharing with us. You are an incredible writer and mother, and I can identify with so much. You are not alone.

Benedetta

Inas;
My son with autism uses the expression a lot -"Gravity sucks".
He did not really talk untill -- the fifth grade
Maybe a word or two in the third. Why we landed where we did I don't know -- but I feel like we were darn lucky to land as soft as we did.


We all end up where ever gravity sucked us down to -- and some times the place it sucked us too - just sucks.

Christie

Inas, what an intense journey. I never knew the depths of this challenge because you masterfully handled each one with grace. This article is both painful and beautiful! You are an amazing, inspirational woman...absolutely amazing!

Another Mom

If there were a Jury, I could certainly count myself as one of your peers. But there will be no judgement from me, Only much respect for the endurance and fortitude you displayed.

Suffering Mom

Inas, you are a Saint. It is Hell. If people want "awareness" this is it. This is what's happening to us. Not the prodigies that the media likes to trot out and make it all seem so special and nice so everyone else can forget and go back to their more "normal" lives and back to blissful ignorance. Of course, they don't want to see this side of it. That would force them to do something about it.

Barbie Hines

Beautiful. My story is eerily similar to yours.

My son went to his first residential facility last April. It was a nightmare. However, he went to his second facility 3 months ago. It's a dream come true...for him. My heart is destroyed, but he gets happier by the week...he is truly much happier than he was at home (at least for the past year). They can let him live a less restrictive life than I could...puberty is hell. Keep looking for the perfect fit...I'm so glad I did. I'm not kidding, his life is improving so much...and in the end, I would rather have my heart broken and his heart happy. All my hopes are with you and your son. Don't hesitate to contact me if you would like to discuss our experience.

Janet Wolfley

Dear Inas, I have been crying throughout this story of your life. It reads much the same as my life with my now 22yo nonverbal son with autism. Thank-you for sharing.

Donna L.

Thank you, Inas, for so honestly showing the ugly, living-hell version of reality that so many of us are living behind closed doors.
That you - or any of us - should feel judged by other autism mothers as not having done enough is deeply disturbing to me. As this epidemic rages on, what saddens me almost as much as the tragedy of hundreds of thousands of childen's lives being trashed is the added tragedy of this relatively new atmosphere of judgment among autism parents, as if we're all a bunch of self-proclaimed mini-experts ready to pounce upon any parent who stumbles and falls along the way, rather than being a source of unconditional support and understanding. It didn't used to be this way.

I've only 'met' you once, Inas, online awhile back, but I've thought about you often and wondered how you and your son were doing, and I thought about you again over the weekend as my son attacked me in the ER after a grand mal seizure. I have nothing but respect and love and compassion for you. And no forgiveness, because there is nothing to forgive.
I wish you great peace,
Donna

sadautismmom

Autism is hell. I have walked in your shoes Inas- you are not alone. Thank you for your honesty. Your story hits home on so many levels. My son tried to jump out of the car on
I-95 yesterday. As he reached for the door handle in the back seat, I grabbed him by his shirt with one hand and drove to the nearest exit. He fought me. As we getting off the ramp, I drove right by a highway patrol car but the cop didn't even notice me struggling to restrain my son. As soon as I got off the exit, I pulled into a church parking lot and tried to calm him down. Sometimes I think my son has a death wish. One day I fear he will succeed. My mind flashes to images of him jumping out of our moving car and getting hit on the highway. I even imagine a wake and the funeral, picking out a headstone and burial plot next to my Aunt's grave. She cared for him when he was a baby. She is his angel. Last night while he was asleep, I touched his forehead and prayed. Even though I am not a very religious person, I felt like I needed to pray for him and ask God to release these demons that possess him because that is how it feels sometimes. Our lives are surreal. This is one place I feel I can come and talk about whats it's like.

R's dad

Dear dear Inas,
First, a big hug.
What if there is no judge, no jury, no trial? What if this was the Olympics instead, and you just won the Gold medal in the Endurance competition (and at least Silver in Unconditional Love)? You did what you did, it turned out the way it turned out. Maybe now is the time for that stage of grief you skipped - acceptance.

Nancy

So raw, so painful, so sad and so honest. The world needs to hear more of these stories.

Stagmom

THIS is autism - not Dan Akroyd, Not even Darryl Hannah. And I don't mean to diminish their personal struggles. You don't often read about this - it's too icky - too uncomfortable - and worse? It would make people AFRAID of autism and then they might want to actually prevent this from happening to another family. Fear motivates and changes behavior after all. And we can't have anything other than bland acceptance and awareness. That we could, as a nation, accept children growing into adulthood who need OLD SCHOOL institutional care after DECADES of dismantling institutions is purely and patently insane.

WhiteRose

Those 2 recovered boys , how recovered ? neurotypical recovered ?

Greg

Beautifully told, Inas Younis! I work with autistic kids and their families, and everyday see this kind of suffering that you described. Although my kids are neurotypicals, I always ask what if it was me. It's exceedingly frustrating and depressing to see public health officials and Government turn their backs on you guys.

Michelle B

I used to think maybe I had bad karma--why else did my son get ASD?

I SO relate, and all I can think is, how did she last so long? How did she do it? How do any of us do it?

You are a good mother, and I admire your bravery and grit. xx

Vicki Hill

Beautifully written, Inas. But I want to tell you that you did NOT lose the battle. My son is verbal, but with symptoms severe enough that he had several residential stays along the way. He is now a young adult, and he has told me not to feel sad about his residential placements. For he said he learned some things there that he could never have learned any other way.

He is now age 26. He has not been hospitalized in 5 years. He is stable.

I remember fighting the idea of residential, thinking that surely I could do it all myself. I was wrong.

Are all residential placements of the same quality? Of course not; choose wisely for a good match with your own child. But do not regret the decision. For some, it is a needed step. As to those who question your decision...they never walked in your shoes.

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