My son’s autism presented abruptly in front of my eyes and I was overwhelmed by my inability to intervene
I had a difficult pregnancy with my son, but he was a ray of sunlight as a baby, in much ways like his older brother, a true joy.
He reached for my face, cooed on cue, his beautiful blue eyes were alert and engaged.
He nursed easily and when it came time to introduce foods, seemed interested.
He played with his toys, even early for his age, reaching for a rattle, a stuffed Eric Carle caterpillar toy that had all the bells and whistles… guaranteed to engage the most disinterested infant.
Multicolored, it had rustle paper in one end and a squeaker in the other.
He would squeeze the rustle paper for long periods, drooling on the fabric.
In fact, this caterpillar became so beloved, it was the inspiration for his first birthday party.
He adored his siblings; his father, and was content being held by his older brothers and sisters.
He was a sunny, easy child.
I breathed a sigh of relief after his first birthday passed and nothing “strange” ever caught my attention.
His older sister, 5 at the time, is autistic.
Even as an infant, she had exhibited a few unsettling behaviors, though then we had no idea why.
We had no prior experience with autism at all.
She was diagnosed at age 2 1/2 with autism spectrum disorder and her doctor told us he believes she functions highly.
We have spent the last few years learning.
We had her baby sister, who became her best friend and confidant.
Indeed, she and her little sister are extremely close.
They are very best friends, in a way I never was with my siblings, even as a small child.
Life with an autistic member of the family is so mosaic.
We have learned a completely different way of viewing the world, simply by looking at it through our daughter’s lens.
Her lens can make a person feel crazy some days.
There is so much truth in the simple saying, “I love you no matter what even though you drive me crazy some days.”
Of course, that happens in everyone’s household- no matter what.
In ours, it happens and sometimes it’s harder, because we are unsure of the language it’s happening in.
If we are unable to see the cause, we aren’t able to help.
We don’t possess that unique vision.
The ultimate frustration for any parent.
How it must be for our daughter… I don’t know.
That is my singular heartbreak and why we strive to understand all we can of her world.
The extreme importance of routine, repetition, of sameness.
The awesome responsibility of being counted on, being always there in the same way, settled on my shoulders in a way I never knew before.
Throwing away preconceived ideas about diet and nutrition.
Developing true patience.
A quality I thought I had but really didn’t understand the nuances of until she joined our family.
When my youngest son reached 17 months of age, I noticed he became quieter… almost abruptly.
I shrugged this off, telling myself he was just going through a “phase”.
As weeks progressed, he became more so. He had been speaking, even saying a couple of two-word phrases.
His vocabulary was extensive, surprisingly so for a boy.
I also noticed he was not making eye contact with me at all anymore.
He avoided looking at me directly.
Looked at a point past my shoulder, looked at the wall.
An icy finger dragged down my spine.
This can’t be true.
This was not how his 5 year old sister had “done it”.
So illustrative of the uniqueness of this disorder, how it is truly to a person individual it really is.
I would call his name over and over, softly, and he would not acknowledge me.
Indeed, he would act as if he were alone in the room.
Standing two feet away.
Two months ago, he would run, giggling into my arms.
He acted as though I wasn’t even there.
I could tell he could hear me.
I waited for my husband to come home after one day of nonstop “signs”.
I flatly told him we needed to take our son to our pediatric neurologist, the one who diagnosed our daughter.
He thought it was premature.
We rarely are not on the same page.
I burst into tears.
“I c-can’t. I can’t! I am watching this happen! I can’t do a fucking thing to stop it! Don’t you understand?! Our son is autistic and I am watching this happen to him in front of me and I can’t stop it!!” I shouted.
My shoulders wracked with wrenching sobs.
My husband tried to console me to no avail.
I apologized for shouting and tried to have a conversation.
I just…was so outraged that this was happening and I couldn’t prevent it.
I was his mother.
I was supposed to be able to protect him.
I was supposed to keep him from danger.
I had to just sit back and let this happen?
That was the answer from our pediatric neurologist to the tearful question repeated to him.
“There is nothing you could have done, or did do. He was already autistic. He didn’t ‘become autistic’. He already was. I know it is so hard for you to wrap your mind around, but it’s true,” he explained.
“But our daughter-” I began.
“Your daughter is also autistic,” he said. “As you know, no two autistic people are the same. If you have one autistic child, the likelihood of having another autistic child is almost 30% and with two…” he paused and looked seriously, kindly at my anxious face, “it’s now 50% if you decide to have another. There is a genetic component, we really believe.” He sat at his computer and watched my face.
My heart shattered. My eyes filled again.
“It’s just… it’s just…so… cruel…” I struggled to say. “He acted…absolutely fine… he was …talking and …acting fine, I thought…” I began to sob again.
My husband hugged me from the side as I tried to compose myself.
Our son was completely oblivious to what was being said and my emotional state, he was playing on the floor with his toys in determined concentration.
Our pediatric neurologist gave us good guidance going forward with how to handle the next 3–5 months, and encouraged us to come back sooner if we needed to.
We are very lucky with our doctor.
He is a true gem.
Our son is now 2 1/2 and it has been a wild ride.
I count my blessings every single day.
He goes to a pre/pre school a couple times a week, at the suggestion of his neurologist.
It has been amazing for him.
He has grown so much expressing himself verbally and in affective behaviors.
Much more so than doing individual therapies for those things.
In our area there is little help for autistic individuals and no professional specialized help at all for infants and preschoolers.
What we have done is self taught and trial and error, largely through guidance by their neurologist.
Peer interaction has been a huge help. It is largely instructive and hugely fruitful.
His teacher is amazing and we are utterly grateful for her.
She is loving and patient, and open to all our input, giving us tons of feedback.
I accepted that I cannot change or do anything to take away the reality of what our lives are.
It was hard for me to let go of that, because I was so stuck on those months of “before”.
Mentally letting go of control.
Accepting ultimate powerlessness in this situation.
My thoughts nagged at me…
Surely I had controlled this situation.
I had failed. Failed. Failed. Failed.
Because I had watched him every moment since birth.
I must have done something wrong.
He surely couldn’t be autistic, right?
I hadn’t seen any signs?
This wasn’t right?
It had to be wrong.
I was a failure.
I prayed a lot.
I cried a lot at night.
Our daughter was different from the start and therefore it wasn’t a shock when she was diagnosed.
It isn’t that I care less about her autism diagnosis.
It is that it wasn’t surprising when it happened.
I cried then, too, but more from relief that I had an answer.
For our son to act seemingly perfectly neurotypical and then progress into an autistic child in a matter of weeks seemed particularly cruel to me, and I let God know that in no uncertain terms.
I always talk in prayer as though He is there.
I feel it’s fine to be angry at the things we don’t understand that He allows to happen, and this has brought a depth to my spiritual life.
My prayer life, particularly my Rosary, was soothing and so necessary.
The meditation and cadence is calming.
I asked Our Lady, mother to mother, to pray for me, to pray for my peace and pray for our family.
I imagined her loving hands, the hands which cradled Our Lord, wiping my tears and caressing the hair from my face, and it made me feel as though my own mother was caring for me. Her presence was felt.
I am learning so much. Sorting out my complicated feelings on this has helped me grow emotionally in many ways.
About myself and about how to look at the world in completely different ways.
About life, love, and how to celebrate what is good, new, and wonderful, and to hell with anything else.
How to let people know I don’t care to hear their unscientific, ignorant opinions on things, too.
How to stop cringing in guilt as though I did something wrong.
I learned to slow down.
Things in our house cannot be rushed anymore.
They have to happen on a timetable that isn’t my invention, to a large extent.
I have gone from being a haphazard planner to having meticulous, detailed itineraries.
This is a good thing!
I have learned to be careful with my words. I cannot speak in maybes around a person to whom things are absolutes.
I also have to gauge how far in advance to prepare our daughter for an event.
If I tell her too far ahead, she will not let go of it, worrying and obsessing.
However, we cannot surprise her with anything or it will go south very fast.
It’s a constant struggle, finding the right balance.
Rewards are plentiful, too.
They both have certain things that will make them laugh on command, hysterically.
It is funny and awe inspiring.
No matter how many times, we can repeat the behavior and it’s guaranteed to bring on the giggles.
As for our son, he is not too rigid right now with scheduling.
He is a far better car rider than our daughter ever was, doesn’t cry in his car seat and doesn’t cry on car trips.
His diet is far worse than hers and has been.
He is much pickier and has far more limits than she ever did.
It just isn’t even worth the time to compare and contrast the two, as they are completely different in almost all ways in how their autistic selves express.
They both are delights, and I cannot imagine a world in which they do not exist. I would be much less of a person and the world would be far less bright without them.
I love them to pieces as does everyone else who knows them.
Having one’s power taken away in the face of a stark situation is a frightening ordeal.
It strips a person completely down.
It makes a person completely vulnerable.
If one is completely unable to do anything at all to remedy the situation at hand, so much happens… to one’s mind, to one’s feelings of adequacy, to one’s faith (if a person has religion in their lives)…
It can certainly obliterate anyone.
It can even destroy a marriage.
If I had lashed out at my husband, at my children… if I had internalized all of this grief and rage… I could have made quite a mess of this.
I could have wound up divorced, alone, or suicidal in any combination of those scenarios.
Making this about me alone could have done all of those things.
And it was about my feelings, sure, in part.
I cannot deny that.
However, I turned to my husband and asked for help.
We talked it out. Talked it to death.
Thank goodness he listens to me and my needs, but this is something we have cultivated after twenty years together.
I asked God to help me understand.
To help me find peace, if not understanding.
Over time, the bitterness was replaced with peace and acceptance.
My prayer was granted.
My nighttime cryfests in prayer gave way to peace.
Don’t get me wrong, my eyes still fill up sometimes when I remember my son, laughing and talking, a happy one year old boy, seemingly “normal”.
I look at him now, a sturdy toddler, bright blue eyes, mirrors of mine, and marvel at how brilliant he is as he colors with crayons.
I hear him say, “Mama!” as he climbs into my lap and all is right in my heart.
We are forging ahead with a smile.