The Truth About Being an Autism Mom

It sucks.

Before everybody starts accusing me of being a bad mother, let me make it very clear that I do NOT mean the kids suck. Quite the contrary. Having been an autism Mom for six years now, I can say with full confidence and plenty of experience that these kids are truly amazing. Let me explain why I started the way I did.

Why does it suck?

The first reason is because finding out you are an autism parent, like any other piece of bad news which overwhelms you with fear and panic, is not easy to hear. No-one wants to be an autism parent. It’s terrifying. The second reason is that from the moment you hear those words they start to take a toll, emotionally, physically and psychologically. I found out gradually, but truth be told I had a suspicion by the time someone else said the words.

Both my boys are autistic, but JB was diagnosed first. He was two-years-old. One day his preschool teacher took me aside and told me she thought I should have him tested. I can’t recall the exact words she used, but I do remember the genuine concern and love she had for him. She spoke kindly and explained she was daring to broach the subject because she had had misgivings about his behavior for a while. She was almost certain he needed help. I listened, quietly stored the information in the back of my mind and decided I would deal with it in my own time.

No such luck.

About one week later I took JB to the doctor because he had a bad cold. After she had examined him she turned to face me and I could tell she was about tell me something I wasn’t going to enjoy hearing. With a very tentative smile she told me the same thing his teacher had, only she was absolutely certain.

“He is autistic.” I felt as though I stopped breathing. That’s when the heavy, slow-burning ball of tension started building in the pit of my stomach and I began to feel real panic. She left the room to get the names and phone numbers of people I would need to contact in order to start the evaluation process. In hindsight, I think she did that on purpose in order to allow me a few moments to process what I had just heard.

It was then that I invented the three-minute-rule.

I allowed myself to cry while she was out of the room but swore that I would stop when she got back and never do it again. I assumed she was gone about three minutes. Ever since then I implement the rule whenever life throws me a curveball and I feel overwhelmed. I give myself three minutes to feel sorry for myself, then I have to stop.

So began the lengthy and arduous task of getting confirmation by experts that my beautiful son had a disease which made him unable to process sensation and cognitive information at the pace “typical” children do. I could see he was completely non-verbal, highly reactive to all stimuli and unable to control his emotions.  I had silently hoped it was a phase. Now I knew it was going to be a permanent part of our lives which we were all going to have to tackle every day. That is the third reason being an autism Mom sucks, because the disease sucks. There are no quick or permanent fixes.

We did speech, hearing, cognitive function, verbal skills, gross motor and fine motor evaluations. We even did a blood test on both of the boys to see if they have something called the dangling-X gene, which some experts believe are a strong indicator of autism. They don’t.

Most days JB took it all as a game.

On others he screamed and kicked and ran wild to the point that I thought my nerves were going to shatter permanently. All the doctors and specialists were very kind and helpful. Everyone else kept asking me what had to be done to cure him. At each test I asked the question, but because there is no cure, only coping mechanisms, I re-evaluated. It was going to be necessary to adapt and spend the majority of our time helping JB learn to function in a world which to him seemed far more loud, bright and encroaching than it does to someone “typical”.

As time went on I began to worry less and insist more.

I insisted on tests, on discussions, ideas and especially on being taught what I could do to lessen my son’s frustration. I learned to insist until I got all the appointments I wanted, when I wanted them. I read everything I could and asked so many questions to every expert I spoke to I exhausted myself and them. It was the only way I could feel I was doing enough understand what we were facing. I was learning how JB saw the world. I had to try and put myself in his shoes and as I learned I realized how intimidating everything must be to him. I learned to learn his way, to see things his way and to think about how I could respond to his reactions.

Most importantly, I learned not to take no for an answer, ever.

I tried to minimize the stress and maximize the hope. My husband was devastated and worried JB would never have a normal life. I was scared of that too, but didn’t dare voice it because I was determined it would not happen. He was still very young so we had plenty of time and we wouldn’t leave a single stone unturned.

My mother cried when I told her and left the room. My Dad took a second to absorb what I had said, sat down and said “make a list of what we have to do and I will help you”. He came to JB’s first tests and stayed quietly in the background just to let me know I was not alone. JB hugged his Nonno and played and smiled, completely unaware he was facing a challenge none of us was prepared for. It broke my heart but I smiled at my baby boy and told him “good job” and hugged him close.

The tests followed one after the other for weeks.

The results came in and the opinions piled up. I realized the fourth reason being an autism Mom sucks: it changes all the time. The official name of the disease is now Autism Spectrum Disorder. It has this cryptic name because it is impossible to pinpoint a set of specific symptoms which every person who has the disease will manifest.

Each person with autism shows different symptoms at different times and at different intensities. As they age all that changes, sometimes over weeks, sometimes over days or even hours. Treatment is a lifelong commitment to carefully observe, report and adapt, at a day’s notice if necessary, without getting any clear explanation of why any of it is happening, or how to fix it. Treatment varies as much as the symptoms.

As a parent it sucks because it is a challenge you can never truly master.

At the beginning, as you are still finding out which part of the disease is the most intense in your child, it seems to get harder every day. When it was Joachim’s turn I wanted him to be diagnosed with autism. Being of a much more quiet nature than his twin brother, my little guy had managed to muddle his way through preschool without too many mishaps. Unlike JB, who was unceremoniously thrown out of his class without any forewarning, Joachim stayed at school and was quietly shuttled to a corner to color or play by himself when the teachers felt they couldn’t get through to him. He wasted one year in a kindergarten class of “typical” kids. It was only after my insisting for four months that we finally got his diagnosis and a new education plan.

In second grade now, both boys are constantly verbal because they vocalize their reactions to everything. JB has the best handwriting in the grade and reads everything he sees without difficulty. Joachim has trouble focusing but he knows as much as his brother, he just doesn’t like structure as much. JB thrives on it. He helps his Papa cook in the food truck. Joachim loves to hug. Neither has the slightest bit of malice or negativity in them. Their enthusiasm never diminishes and their affection is so genuine it makes me tear up.

But even with all these advances and positive aspects we have discovered, one thing that never changes is the real reason it sucks. Most people are more aware of the disease’s existence now, but that does not mean they want to have to deal with it if they don’t have to. They avoid contact.

Some people try to be supportive.

Still, the negative responses hurt like nothing you can imagine until you’ve experienced it. I told JB’s preschool about the diagnosis and over the summer, between his first and second year there, he got private speech therapy and did very well. Once back in that tiny room with 11 other kids and two teachers, the trouble started and he acted out. A lot. Once violently. I hired a shadow they recommended but when I told her how little I had spare to pay her, after proclaiming she loved him and wasn’t doing it for the money, she disappeared. When I called her and asked why, she blamed her husband, saying he had forbidden her from continuing.

Two days later the preschool director told me not to bring him back, ever.

The next morning I had to pull him away as he and his brother hugged each other and wept because they didn’t understand why they were being forcibly separated. JB was no longer welcome in the room where just the day before he had been greeted with smiles and hugs. I heard later that some other parents had threatened to take their kids out of the school because they didn’t believe he was autistic. They said he was just a spoiled kid and I was a bad Mom. The playdates for both boys dried up and people could barely say “good morning” to me after that. It was a church preschool.

After being miserable without his brother, Joachim learned to get along alone in class and their bond grew again at home. Now people say they would never guess they are autistic when I tell them. I don’t hide from it and I don’t use it as an excuse for bad behavior. These boys have proved they can learn so they are treated like any other child. Good manners, good grades, integrity and above all empathy are the overarching themes of their education, both at school and at home. Luckily, the upside of autism is that sincerity, lack of guile and fearlessness are hardwired into them already.

People who have “typical” kids have no idea how much work, worry and waiting went into getting JB and Joachim this far. I know this is just the beginning. You never stop worrying about your kids and autistic or not, all the same pitfalls, challenges and obstacles face my boys just like all the other kids their age.

I am very proud of my boys.

They’re stronger than I ever was at their age. They have rebuilt their bond and it will help sustain them whatever may happen. Their relationship with their Papa, which I agonized over when they were younger and the tiniest change seemed morph into an insurmountable obstacle has flourished. Nothing makes me happier than seeing them playing with him and how much the three guys of the family are a strong unit.

My husband and I will be there to support and guide them as best we can and to ask for help when necessary. My gratitude to all the people who explained this disease to us, who taught and who taught me to be an advocate for my sons is infinite.

But what would really help is if everyone around us would stop saying how hard they know it must be, because they do not. They can’t. Their kids aren’t autistic. Whenever a family has a tough reality to live with all we want is for everyone to treat the children like everyone else. They need to teach their own kids how to be around the “different” kids, to see them as people. Children need to understand they can be friends with anyone, that they just want the same thing we all do: acceptance for who we are.

Tolerance is not enough. Everyone needs to learn acceptance because from that, with time and mutual respect, comes empathy and then, ultimately, love.

 

Feature image courtesy of Flickr, http://resn424.wixsite.com/resnphoto

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