I would by lying if I didn’t say I hesitated at posting this guest post. Not because I don’t think it is well written – it is, and not because I don’t think she has a very valid perspective – because I think she does. But because I did not want to see backlash from anyone in the community. I see this post as a deep, real, perspective of a wonderful mom who loves her son who has severe autism very very much. What she wants the world to know is – autism is hard. Her talking about how hard it is and how frustrating the difficulties are is her right. I will be very disappointed if anyone attacks her perspective, or me for sharing it. We need to be a kinder community to each other.
Jess is a 31 year old Mommy to an incredible 6 year old low-functioning Autistic Child. Her husband has been her anchor through all these rough times, and she says “I could not do a thing without him”. Her son is her muse, her angst and her love, she just hopes one day, he will be able to tell her verbally all the things he feels and thinks as well.
I Don’t Think They Realize…. A Perspective Piece on Autism
Autism is terrible. It is not unique, it does not give children super mental powers, it does not make them lovable like Rainman. It is a horrible diagnosis that can rip parents apart mentally. I am not talking about High Functioning Autism either. I am going to be talking about Low Functioning Autism, that kind which my son has.
Do not misunderstand the meaning of this article, I love my son fiercer than a Momma bear. If a Big, Scary, 7 foot, Danny Trejo-looking man came up and started making fun of my son, I would kick him in his manly parts and try my hardest to beat the crap out of him. Right this minute, my son is squealing and screaming in my ear, because I know he wants to go outside and play in his pool, I just have to suck it up and bear it. Why? Because I love my son, I am not one of those mothers to abandon their kid, or heaven forbid, do something terrible to them, because they annoy me.
Dylan was born with Autism. As an infant he refused to breastfeed because he was too close to a human body. He did not like to be held, and was stiff as a board when you picked him up. Sean, my husband and I knew something was wrong. Dylan never learned to speak, he started mimic-ing for a week, then quit. He has said, in our presence, two words; those words are gone. He also did not start walking until he was 15 months old, his balance was so off, he low-crawled for months before he could balance enough to walk upright.
We dreaded using the ‘A’ word, and went to so many different specialists to diagnose what they thought was wrong with him. We went to hearing specialists, neurologists and pediatric doctors all over the Omaha, Nebraska area. We couldn’t get a thing. We went to the local school district to test him, at the suggestion of my Husbands Mother, who was a teacher at a Blind School in New Mexico.
This turned out to be the answer, they dropped the bomb on something we knew already to be true. He was Autistic… and not a little, severely. Let me explain a little on MY definition of Autism. This is not the autism definition as it applies in text books or in the medical community, just mine as it pertains to Dylan. My sons brain is not wired correctly. A functional human brain is ran by The Hind brain, which controls the baser instincts, this is called the primitive brain. The second part is the Limbic System, or the emotional brain, which controls flight or flight responses, and the ‘Right and Wrong’ thinking. The third part is the Neocortex, or the rational brain.
The NeoCortex is what makes us human. It give us our power to develop speech, abstract thought, imagination and conscious thought. This is what keeps up in the rank of other primates and dolphins. Its what makes us smart. It is what makes us able to function at such a high rate. We can build, we can make communities, we can develop the ability to form relationships and to love.
The reason I describe all these parts of the brain, is because in my opinion, the severely autistic brain functions at a third of what the normal brain does. Dylan is ran by his Primal Brain. Whatever it takes to allow him to survive, to feel good and to keep happy is just about all he can contemplate. He doesn’t seem to feel pain or know right or wrong, that the Limbic system would control. Dylan cares about his personal needs, not if he is making others feel happy, or hurting feelings. He does not use his imagination, or seem to care about anyone else around him like most humans tend to do. I am not saying that Dylan is psychopathic, he just doesn’t seem to realize that others even matter.
Up above, I said that Dylan is whining and screaming in my ear because he wants to go to the pool. I know this by the power of deduction, not because Dylan told me. He does not speak or communicate like any other person in the world. If he wants something, he will drag you to it. If there is something else he wants, and he doesn’t feel like showing you, you have basically 15 seconds to figure it out by being Sherlock Holmes, before Dylan goes crazy. He grits his teeth and smacks at his body, and screams.
My husband and I basically have to mentally deliberate what he could possibly want, and we usually have to go through a list. Food? Drink? Is his movie selection still playing? (HE has to have a movie playing 24 seven here at home, we don’t know why, he never watches it.) Does he need to go to the bathroom? (He is almost 6 and still not potty trained.) Is he bleeding? (He doesn’t seem to care if he is in pain, or bleeding.)
Dylan has gotten out of the house twice in his life, he just wanted to go outside, and heaven forbid showing us he wants to. Thankfully we found him each time, before anything bad could happen. We can rarely go out to shop or to dinner, Dylan seems to have a hair-trigger on whether or not he wants to be out or not. He will be fine one minute, and then throw an unholy fit. Sean and I look like the worst parents in the world; the judgemental looks are probably the most undeserved thing even.
Dylan is not the worst kid in the world, he is actually very sweet and loving, when it makes him feel good. This is not for the fact that he is worrying about Sean and I’s emotional needs. He loves to laugh, and wrestle and play tickle games. The mental stimulation from them keep him happy, and if he wants to be tickled, he will not stop for hours. He will grab our hands and bring them to his body, demanding tickles.
Finding help for the severely autistic is the hardest thing about life with Autism. Most special schools and therapy centers cater to the child with Ausbergers or High Functioning Autism. These kids are relatively normal, NOT SAYING THERE IS NOTHING WRONG WITH THEM, I can just picture the hate mail on that statement. But those children can speak english, and follow simple directions enough to be able to function in society. Dylan has none of those abilities. He will be home bound for the rest of his life, or will be placed in a long-term care facility, if something happens to Sean or I.
We are currently on our 4 medication to help with his ADD and ADHD, he goes to a psychologist for those. He has been in and out of different therapy centers since he was 2. We are trying ABA therapy again, starting next week. He will be in one on one training for 7 hours a day. The 2011-2012 school year, Dylan was in Kindergarten, which is a joke in itself. He could not grasp the concept of letters, numbers and colors. Sean and I feel it was more of a social experiment for the other children. A primer on how to deal with the handicapped. He regressed so badly, that Sean and I are unsure whether he can get back some of the things he learned. He was bounced back and forth from Special Ed to kindergarten, doing so many activities, his little mind couldn’t concentrate on the task at hand. This has shown up in his behavior at home, as he cannot focus on anything more than 5 minutes at a time.
This is not a bitch session, or am I trying to shove my son diagnosis down anyone’s throat. But I don’t think people realize how much emotional trauma Sean and I go through on a daily basis. Dylan does not sleep through the night, he wakes after his movie ends, and screams and runs around the house looking for us to restart it. We have never heard, ‘ Momma’ or ‘Daddy’, never heard ‘I love you’. No ‘Please’ or ‘thank you’, no ‘ May I…’.
Sean and I rarely go on dates, or have any alone time. Trying to find anyone that is comphortable with a severely autistic child is extremely hard. Most ‘Mommy and Me’ programs or ‘Parents Nights Out’ recoil when they hear he is autistic. Day Care and tutoring is impossible as well. You have to pay extra for a special needs kid. Special schools and Autism centers will not even try to take a Low Function-ing kiddo into their ranks.
We love our son, we really do, we will and HAVE done everything for him, and will continue to do so for the rest of his life, this is our ‘cross to bear’, as we brought him into this world. We will never give up on our boy, but we continue to hope that there is some breakthrough in the research of autism, that billions of dollars have been put into. Pretty much all that has been learned so far are the numbers of diagnosis per capita.
Until that time, we will soldier on and try to spit in the face of any detractors or people who make fun of my child. No t-ball or birthday parties, for his sake, only ours. He doesn’t care about sports, or other children, he just lives day to day. Most people only see the giggling little man who runs around our house; they just don’t seem to realize the hardship that this really is.
We will fight the face of adversity that is shown and given to us on a daily basis, try to fight the extreme depression that is caused by this Autism and cry internally for the lost childhood that our son will never have.