Tag Archives: depression

A Father’s Powerful & Extremely Personal Thoughts on Parenting

Posted on July 11, 2014 by | 45 comments

*This was what my wonderful husband, Richard, wrote as a comment on my post the other day.  I asked him if I could make it a post all on its own.  He gave me permission…

“Pain is inevitable, suffering is optional.”

There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.

My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.

Me? I didn’t really matter.

I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.

It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.

And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”

I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”

If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.

You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.

And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.

I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.

My Beautiful Husband and Daughter

Richard and Emma – 2011

45 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , , , , , , , , , , , , , , , ,

Dare to Hope

Posted on May 1, 2014 by | 35 comments

Trigger Warning:  Parental despair

Five years ago I was in a bad, bad place.  Life felt unbearable.  The future loomed ahead shrouded in fear.  I could not imagine a life that was not bleak and filled with pain.  There were times when I could not bear the thought of another day.  There were times when I felt it was all too much.  People would make kind suggestions, but none of their words made sense to me.  I was sinking and saw no light.  I thought it was because of my specific circumstances.  I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her.  I was told she couldn’t comprehend this world.  I was told concepts like less and more, time, currency were beyond her ability to grasp.  I was told she was in her own world.  Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children  had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed…  There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry.  I cried for myself, but I also cried for my child.  I loved my child.  I ached for my child and what seemed to be her inevitable future.  Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being.  I had fantasies of “heading north”.  I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.”  Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing.  There was a part of me that meant it.  I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description.  There are those who will judge me and what I once felt.  There are those who will point out how self involved all of this sounds.  They will say, but how could you not see that what you were feeling was affecting your child?  There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror.  I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours.  She is writing now.

She is writing such incredible words.  Sometimes a sentence may take her five minutes to construct.  I would cheerfully sit for thirty minutes or however long it takes for her to express herself.  Parents hear about my daughter and they say, “Ah, but my child isn’t like that.”  And so I ask, “How do you know?”  Parents say, “I know my kid.  He/she isn’t able to understand.”  I once believed that too.  And so again I ask, “How do you know?”  Parents say, “I know my child better than anyone.”  I once said this as well.  I thought I knew.  I believed what others told me.  She would laugh and then run full force into a cement wall, using her head as a batting ram.  We would get the dreaded phone calls from her school.  All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.”  “She does not know the value of a penny.”   “We will continue to work on sight words.”

Today my daughter is enlightening me.  If you want to know more, read “How We Got Here“.  Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.”  Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that.  I cried because I didn’t know until recently.  I cried for all the years when she had no way of telling us.  I cried for all the times I didn’t believe.  I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams.  I cried for every single parent who has ever felt the way I once did.  I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them.  I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.”  I didn’t dare hope that one day my daughter might be writing the things she now writes.  I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair  – I was once just like you.  Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant.  I’m grateful now that I didn’t find such a group because there’s another way.  I found another way, but not before making many, many more mistakes.  This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope.  Without that we are all lost.

*As always, I asked Emma for her permission to publish this post.

Watch:
Wretches and Jabberers
Mark Utter’s I am in here

Read:
Ido Kedar’s book:  Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.

Emma getting ready to write

Emma getting ready to write

35 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , , , , , , , , , , ,

In Answer to – Medication?

Posted on September 17, 2013 by | 10 comments

A number of people wrote in on the post, To Medicate or Not with their experiences.  The post was not about medicating autism, but about some of the co-morbid diagnoses that many people who are also Autistic  have.  Quite a few people wrote about managing depression, anxiety, stress and related issues.  Some wrote about how they began trying different medications in their late teens…  “I started medication at about 19…  I started with Prozac and it went well for a while but over time it stopped working.  It did make me feel better at first.  From there and over the years, I have tried many different antidepressants for my anxiety- Prozac, Paxil, Zoloft,Trazadone for sleeping, Zyprexa, Cymbalta, Welbutrin, Effexor, and Nortriptaline.”

Many parents wrote about how they agonized over the decision to try medication and almost all of them said it was done as a last resort.  Both Autistic parents and parents who are not autistic said similar things about their decision to medicate their child.  One person wrote, “my autistic child is on ADHD meds and has been since he was four. AdderallXR until last year, now Vyvance (same med with less appetite suppression). Clonidine at night. He wants to be on them. He has told me he feels more creative and happy with his mind not looping fifty things at once.”

Another wrote, “I had been fighting the medication for a few years.  I have had anxiety since I was little.  I had the doctor refer me back to one of my psychiatrists who is willing to talk and if necessary provide a prescription.  This time we tried combining medications.  Welbutrin seemed to help a bit so we tried things like Ritalin to help increase its effectiveness.  I was able to focus much better and things seemed to go well but I got severe heart burn as a side effect of the Ritalin.  We tried Dexadrin next but it didn’t work.  I gave up for a bit and then discovered Buspar.  It is an antianxiety drug but not in a class like valium etc which are addictive. ”

Lots of people wrote about having to try many medications and often combinations of things before they found what worked.  And a number of people wrote about being judged harshly by others either for taking medication themselves or for deciding to give it to their child.  One person wrote, “…they do not know.  They pass judgment, but have not lived the experience.  They make comments and say things as though they have the answers, but they don’t.  They  don’t know what it’s like.  They can’t.  I’ve learned to say nothing and ignore the mean comments and loud whispers.”

Another wrote, “I don’t tell people anymore, because I’m tired of their uninformed criticism.”

Again, thanks to everyone who wrote about this.  Really appreciate the honesty and willingness to share your stories.

10 Comments

Posted in Autism, medication, Parenting

Tagged , , , , , , , ,

Peering into the Darkness

Posted on September 5, 2013 by | 23 comments

Sometimes there is such tremendous darkness, it scares me.  Sometimes my instinct is to go deeper into the darkness.  Sometimes my instincts are not helpful.  Sometimes my instincts lead me the wrong way.  Sometimes…

When I was in my thirties I went down into the darkness, so deep I began to wonder if I would ever find my way out.  There was a moment, a moment when I stood at the edge and contemplated the void.  It felt blissful.  The darkness seemed to hold the answers I sought.  The darkness held the promise of calm and peace and quiet from all the noise and pain.  It beckoned to me and I believed, for a moment, I believed it was the answer.

I would like to report that in a single instant I made the decision to step back from the edge, but it wasn’t like that.  It was hard to move away.  It was difficult and painful and there was nothing elegant or easy about it.  Stepping away was more like an agonizing scramble of falling, tumbling backwards and clawing forward, grabbing on to whatever scrap of hope I could find.  Some days felt like a slow, steady, groveling crawl on my hands and knees just to get through the hours that make up a day.  And on those days I believed this would be my life forever and I wondered how I could continue.  It was on those days, when I believed I knew what the future held, those were the days that were the hardest.

There are tricks I learned, little things I learned to do, some are silly perhaps, but I do them anyway.  When things feel like they are too much, I tell myself I can get through the next hour, just one hour without hurting myself or anyone else.  Just for the next hour, I will not do or say anything that will cause harm.  Just for this next hour.  And when that hour passes, I take the next hour, one hour at a time.  I have done this for many years now and funnily enough, this method of taking one small manageable segment of time and being present for whatever it may bring continues to work.  During those early days when all of this was new to me, I even gave myself permission to do whatever it was that I wanted to do, but knew it would hurt me after the hour had passed.  Then the hour would pass and I would see I had gotten through it and I would say, okay, just one more hour.  I can get through one more hour.  And I did one hour at a time, I did.

I learned to make phone calls or text people I trust and know are safe.  I let them in, I asked for help.  Sometimes help meant listening to another person, sometimes it meant they listened to me.   I learned I had choices, even when it felt that I did not.  People had to remind me to do the thing that everything in my being screamed at me not to do – reach out in kindness to another.  Sometimes even when I could not muster up the strength to be kind to myself I could show kindness to another, so I do at least three anonymous acts of kindness. (Using the present tense now.)  The anonymous part is important.  It’s imperative that my actions are not about getting thanks or being appreciated, but are about actively taking actions where I can be the person, even if only for a few minutes, I would like to one day grow up to be.

I look back on those years, so long ago now and no longer recognize that person who contemplated the darkness.  I do not know her.  She is unfamiliar to me and I’m grateful.  Mine is but one experience, there are countless others.  I have no answers.  All I know is that to keep the life I now enjoy, a life I could not imagine myself ever having, a life that, so many years ago, would have seemed too good to be true, I must do certain things on a daily basis to make sure that tomorrow and the next day will not involve being anywhere near the edge where I am tempted to peer down into that pit of darkness and contemplate its depths.

If you or someone you know is struggling, reach out for help.  Tell someone else, let them help and remember you are not alone.

23 Comments

Posted in Addiction, depression, hope

Tagged , , , , ,

Rethinking Unhappiness

Posted on May 3, 2013 by | 42 comments

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

42 Comments

Posted in Autism, Parenting, presume competence

Tagged , , , , , ,