Around Our Town...Those We Love
04/01/2005 - LaurieSue Medlin describes life as a mother of a child diagnosed with autism:
To put it simply, Autism is a 'birth defect in the brain'. Expounding on that a bit, it is a permanent, chronic, neurological medical condition and developmental disability, with NO KNOWN CAUSE OR CURE.
A person with autism cannot properly understand what they see, hear, and sense. They also cannot communicate ideas or feelings. They experience severe problems with social relationships and communications. Their hearing is usually hyperacute, so that hearing a cat meow may sound as loud as a person talking right next to you….. Noises can be completely overwhelming. Many children react to these intense stimuli by having tantrums, since they cannot communicate. Aggressive behavior (hitting, kicking, pinching, biting - themselves and others) is common. Remember, they CANNOT tell you what is wrong! Many times something has been wrong with Noah, and we have never figured it out, just held him until it was over.
It is so important to know that children with autism are NOT naughty, nor do they need to be spanked, punished or disciplined!! Rather, the public needs to be educated about autism. Autism is a HIDDEN disability, meaning if you just see a person with autism on the street or in a store, they APPEAR perfectly normal, because physically, they are! However, if you are privileged enough to spend time with them, it would become obvious to you after a short while that they are not 'normal'. If you were able to spend some time with our son Noah, you would soon realize much of his speech is a quote he has heard, whether lines from a veggie tales video, or short sentences from his computer program. He also mimics what is said to him throughout the day, whether it be 2 days or 2 years ago. If you ask him how his day was or what he did, he is unable to answer. Noah also has 'Repetitive Motor Movements', more commonly known as 'stimming'. Fingers wiggling in front his eyes, hand flapping, spinning, and such, sometimes accompanied by non verbalization noises. Though these movements are not 'socially acceptable' behavior, they are often done when the child is happy, excited or stimulated by something. Perseverative behaviors (obsessive/compulsive) are common as well, fixating on an unusual object for unusually long periods of time. Noah looks at letters by turning his upside down or sideways, he likes blenders, he can press numbers on a calculator for 30 minutes without stopping, etc.
Noah's autism makes him very rigid, and he lives by a visual schedule, pictures that show him what his day consist of. Major changes in his schedule, such as a move or even a family vacation can be devastating to not only the child with autism, but the entire family. Even what would be 'pleasant' changes to us are not to him….. Birthdays and Christmas, Thanksgiving and school breaks…these are all extremely difficult in our home. It is no wonder that the statistics show 9 out of 10 marriages end once the autism diagnosis has been received.
Some children also have sensory integration dysfunction with autism; Noah is included in this as well. He also has sleep disorder, he has never ever slept through the night; he cannot help this and so far nothing can be done. This is definitely one of the biggest difficulties, being up every night. Days are long, but nights are longer!
If you are not living with someone with Autism, you can only imagine the difficulties. It is considered 'The Greatest Mystery' by many professionals all over the world. The effects of autism are very devastating for the immediate family. The simplest things are sometimes impossible, like taking a shower (what do you do with the child?) or wanting to take a walk (autism prevents a child from knowing or understanding danger, they would walk out in front of an 18 wheeler as easily as eating a cookie). Each day, sometimes each hour, holds its own challenges.
Some days are worse than others… some days Noah is unable to participate in everyday activities because he cannot get out of his own world…… times of incoherent babbling directed to the wiggling fingers on his rigid arms……. …the heartache of him not able to answer a simple question (How are you? What are you doing? Do you hurt somewhere?)…….. The rejection faced by his peers, and our peers as well…….knowing your only son may never live independently…much less marry.
Living in a small city like Casper also presents its own challenges. After going to church together as a family our whole lives, now we cannot, as there are no churches that can take care of a special needs child.
I think many people are afraid of what they do not understand, thus the isolation that comes with the autism diagnosis. It is sad because the family getting this diagnosis needs support as much or more than any other family would. Death is tragic, but over time, healing does come. With autism, you have a 'death' in the diagnosis of the child you thought you would have, but there is no healing because the person is still with you…….you grieve and mourn over every occasion. When other children start Kindergarten, the child with autism goes to a special Ed class, with all sorts of therapy interventions..…other children go to parties, your child does not….. People staring and even making rude comments when you dare to venture out in public…..Your son looking forward to Christmas, or telling you what he would like…..these do not happen in the home with autism. Even requesting a special snack, or telling you they are tired…the little joys of having a child are completely changed. While you still love your child, they will never be 'normal', and all those Parents books and magazine subscriptions are utterly useless, because none of them tell you how to parent, how to live, with this disability.
However, there are a few bright spots in this dark diagnosis… . His team of doctors is super with him, and the teachers and therapists at CDC do a great job…… Noah is affectionate, and loves his family…… There are those times Noah will give a kiss; what a treasure!..... His excitement over seeing a lawnmower, or going down the small appliances isle….. His joys are different than most children, but he has them. His brain may be wired totally different than a 'regular' child, but we love him. He is our child, for better or worse, and we would not trade him for another!
Derek and LaurieSue lead the Casper Autism Society, a support group that has been meeting every month for two years. The contact info is CasperAutismSoc@bresnan.net. The meetings are casual and interactive, and are held the first Thursday of each month.