For MANY years, I sought tirelessly to find something that I could do to generate money that would enable me to stay home and take care of both children. Even when my husband was alive, I didn’t get a lot of support from him and was basically on my own when it came to the piles of endless paperwork, long, involved phone calls to several local and federal agencies and a plethora of meetings, let alone the daily care involved in raising them.
Until I had children on the autistic spectrum, I worked for many years. I had my first job at 14 (delivering papers), worked in a mall shop when I was in high school and had a job working at a nice college when I was 17 right after graduation. I worked in various positions in the administrative field and when I was in my late 20s, I met my husband and we started a family. I worked retail for a good while when my son was young so I could have flexible hours, until we moved and it just didn’t seem justifiable for me to do the longer commute when we had only one car at the time (one of the “on its last legs” variety). Thus began my stay at home years. I would come to realize that being the stay at home mother of a child with autism was anything but *just* staying at home.
One of the most profound things about raising a child with autism (this is when I *only* had one) was the incredible amount of time invested in coordinating all the different things your child needs. In order to get the minuscule amount of services and funding available, you must spend countless hours on the phone, filling out a myriad of forms and constantly filing, checking back and keeping tabs on everything. Ensuring that you apply for these things are imperative, because unless you are pretty much rich, you simply cannot afford to do most of what is out there. (Hindsight: Buy a file cabinet!)
My husband was a blue collar man, and he worked very hard as a sheet metal mechanic. He didn’t have any special schooling or trade diplomas, so he worked his way up the old fashioned way; through hard work and years of patience. So, he never was in a union or made the big bucks. However, the field was specialized and lucrative enough that we were doing “OK”. Alas, it was not enough for us to qualify for the Head Start program close by that provided early intervention and diagnostic services. These two years would prove extremely detrimental for my son’s development, as he would go without critical services that perhaps could have helped him transition to school more easily. (that’s another story!)
The Science of Tantrums (from an autism parent’s perspective)
I can remember when my son was about 13, his tantrums turned scary for me. He was no longer the little boy I was able to corral into a safe position and protect him, myself and my home from damage and destruction. His moods and behavior turned dark and perilous and my life became increasingly difficult. On top of this, I received no support from several people in my life and was asked insulting questions that pretty much just increased my stress. So, as you can see, I was completely on my own.
The first time I had to call the police on my child was a terrible, sad day. He was being destructive and I had a television thrown down a flight of stairs at me. His in-home assistant was off that day and things escalated quickly. Threatening to harm himself, I called the police for help. Thankfully, my county has a “mental health crisis team”. They were called, and since there is only one for a county that spans hundreds of miles, we had to wait for them to arrive. Once they were there, they were able to take over for the officers that were there to ensure safety. NONE of the officers back then were trained in Autism response, so I spent most of the time explaining what was going on and trying to help them understand. This would not be the last time I went through this.
He was admitted after a grueling 20+ hour wait and after about 2 weeks of medical and therapeutic intervention, he came home. It was a cycle that lasted for several years and I endured it all alone. My husband and others never asked, “What can I do to help?” While I’ve long tried to put that behind me, it is something that I will always carry with me and remember.
Those formative years were dark, dangerous and filled with many challenges. Unfortunately, I was also suffering through a verbally and physically abusive marriage, as well as dealing with personal health issues. It was not a good time to be me. In some way, I’m sure it helped me be the stronger person I am today, but I would have rather not gone through that.
The day after my husband passed, you can imagine the things I had to do. Knocking on neighbor’s doors and letting them know, countless phone calls, paperwork on top of paperwork, totally unfamiliar and being in shock and barely able to function etc. Thankfully, some who weren’t always there for me stepped up and took the kids so I could drag myself through the multitude of processes I was facing. A neighbor of mine, an older lady from the “old school days” I suppose, stopped over for a courtesy visit of some sort. She sat down across from me, expressing condolences. Mind you, this was less than a day after my husband passed. He passed at 6 PM the night before, she was sitting across from me at about noon the next day. “So”, she said, “when are you going back to work?” proceeded to come out of her mouth. Still in shock and unable to comprehend her rude question, I just responded with, “I don’t know what’s going on considering my husband is still in a morgue.” I don’t think she intended to be rude, but that sure took nerve to ask.
This small story/article I’ve written doesn’t even begin to cover the many different types of therapy my son has had over the years and the countless hours of speech/language pathologists, behavioral psychologists and psychiatrists, research groups, play groups/therapy, in-home assistants, school meetings by the dozens (probably more), hospitalizations, piles and piles of paperwork, applications for services, home modifications, specialized schooling and the war to get him there. I don’t regret one stroke of the pen, one moment of the 20 some hours I sat waiting to get him admitted, the three hour phone marathons with providers, social security and countless other entities.
Today, things are completely different. Is it still challenging? Oh yeah. In fact, it probably always will be. People still judge him (and me) like they understand my/our world. There are days when he barely has it together and I need to be there for him and talk his anxiety down or walk him through a process that’s new to him. His current challenges prevent him from wanting to drive, so I do that as well to help facilitate his job needs better.
I still get criticized by people who have no clue what it’s like to live through what I have. My son still has meltdowns and can lash out with severe anxiety, slamming doors and a few choice words. If that’s *all* I have to help him with, that’s what I consider a positive thing. Only when you’ve had to tear down sheet rock or have contractors come in and install reinforced walls can you ever begin to understand how far he and I have come on this journey. Many people still criticize me and say things that make themselves feel better through criticism, but I no longer pay any attention. While I’d like to send them a book or educational pamphlet (lol) about “What is Autism and how NOT to be an ass while asking questions or commenting”, as far as I can tell it doesn’t exist. Perhaps I should write it and see if I can get it published. It would be far more than the “buy a blue light bulb” charity is doing to spread awareness. </end sarcasm> lol.
Autism is not just a Rainman person walking around demanding to be placed in front of a television because Jeopardy is coming on. (He was a savant by the way and COMPLETELY different from typical autism) Autism is a complex, lifelong developmental disability that has so many different facets that a diamond can’t compare. Perhaps that’s why people who don’t know any better call them special. Because they are. If unique is synonymous with special, then that would be accurate. My daughter’s autism is so completely different from my son’s, that it’s truly like night and day. There are some similarities, but there are also vast differences. I spend each day determining the best courses of action and struggle to find peace and tranquility in my often tumultuous world. Helping people to understand what I go through can be very difficult. Autism has what is called “comorbidities“. In other words, many individuals with autism don’t always have “just” autism. It exists in a petri dish of other developing issues that wax and wane. Some have learning disabilities, others have bipolar disorder. Some have severe anxiety, others never speak.
One of the best things you can do for a friend or family member raising a child or living with Autism is to *be there for them*. Whatever way you can support them, do it! Offer to listen, invite them out again, even if they’ve turned you down before, this might be the time they can get help and take off for the night! However, rude criticism and judgments based on small incidents you’ve glimpsed and no life experience or clinical knowledge just makes you look like an nonsupportive and uncaring person who would rather tear another down that help lift them up. That’s spiteful and doesn’t do a thing (unless you’re a bully and get off on that sort of thing!) so take a moment and be kind and know that the tiny little window you see, whether it’s the tantrum in the grocery store or a child throwing food in a restaurant or an exhausted parent who needs a break, walk in my shoes before you judge me (or my kids).
(^^ “Sorry you are having a bad day” goes so much farther than a tsk tsk and a stare, trust me!)