The Hair-brush
MTHFR,Tuberous Sclerosis Complex, Fragile X, Cornelia de
Lange, Down, Angelman, Coffin-Lowry, Cohen Laurence-Moon-Biedel, Marinesco-Sjogren,
Moebius, Rett and Williams syndromes.1, 2 Complex.(ABA)OT,PT,Speech-therapy,neuro psychologist, psychiatrist,psychoactive-drugs,antidepressants,anti-psychotics,Oxytocin, Secretin,elimination-diets, vitamin supplementation,chelation,pivot response therapy,AAC,Floor time-DIR,social-stories,TEACCH,sensory integration,Massage therapy,Music therapy, animal therapy, Acupuncture,Biofeedback,Hyperbaric oxygen therapy,TransCranial magnetic stimulation,CranioSacral therapy,Stem-Cell therapy, Vocational rehab, IEP,504,self-contained classroom, PSR, Individuals with Disabilities Education Act (IDEA) 1997
If you are a person that knows a little bit about the above paragraph then-
someone you love might have autism.
In addition to having "Autism Awareness Month"in April, some of us would probably prefer May being "Ignoring Autism Month". We could go on a lengthy vacation, ignoring behavior issues, stimming, and moodiness. We could rent an island in the Carribean with a shallow Lagoon. Our kids ,lounging in the warm, crystal-clear water they so love, could be tossed a bar of soap. This would take care of the fights over hygiene everyday. We could chew on coconuts instead of brushing our teeth. Burying each other in the sand and building castles would take the place of sensory integration therapy. There would be a prize for who lined up the most sea-shells! Our vacation victuals? Chicken nuggets, hot-dogs and macaroni and cheese--not a vegetable in sight thus eliminating the dinner melt-downs. Our night time entertainment could be PBS documentaries or a talent show with everyone bringing their current fascination to the stage. Facts and honesty to be applauded at all times. Yes, I am all for the April thing---if the May thing follows.
After having sold property, belongings, and everything but the kitchen sink in pursuit of some of the above therapies: after trading in time, friendships and partial sanity also in pursuit of above therapies, it is daunting to see the paragraph below:
"Although many psycho-social interventions have some positive evidence, suggesting that some form of treatment is preferable to no treatment, the methodological quality of systematic reviews of these studies has generally been poor, their clinical results are mostly tentative, and there is little evidence for the relative effectiveness of treatment options."]Krebs Seida J, Ospina MB, Karkhaneh M, Hartling L, Smith V, Clark B. Systematic reviews of psychosocial interventions for autism: an umbrella review. Dev Med Child Neurol. 2009;51(2):95–104.
Is this saying that everything we did, everything we tried might or might not have worked? How then did we see so much progress? How then have we crossed so many hurdles and seen our kids overcome so much? Four out of our five children have diagnosed neurological difficulties.
(Budge gang 2012--which one of these is not like the other? Poor Dave!!!)
Maybe what we need to do is go back in our time machine to a place and time before there were any of the above therapies. How did families cope? If you talk to my in-laws, my husband cried the first full year of his life and they did not know why. He probably had some kind of milk sensitivity or other sensitivities. He still does not like loud noises and is sociable, but not overly so. He knew the name of every bird when he was 6-years old and his family applauded him for it. He kept reptiles,mice, even and even an alligator[you know, the small pet kind that are extremely cranky?] in his basement when his curiosities turned to animals. He moved onto dinosaurs and finally settled on Sports and me. He was a good student, but he said he had to work very hard to concentrate. His parents supported him throughout his schooling career with unrelenting love and support. They never, ever gave up on him. When he decided to go to professional grad school they forked over $10,000 a year in support his ambition. Finally, after years of working so very hard for his grades, his brain caught up with him and he breezed through PA school and made the high honor roll. If he had been born in modern times perhaps he would have been labeled on some kind of spectrum, who knows? Without IEPs, without behavior therapies, he learned his way around himself. He is one of the kindest, most empathetic souls I know. He also has a photographic memory for faces--not at all part of the autism spectrum, just proving you don't have to have every single color on the rainbow of autism spectrum to perhaps have a portion of it . He is also naturally athletic and can pick up about any sport on first try...except golf. Another thing that does not fit the "spectrum" mold.
(he looks cheerful here--his poor parents)
(Dave's parents at his PA school graduation--these guys are the BEST cheerleaders I know)
After, we had been married several years, my husband and I discovered we had both read every encyclopedia, every factual book in our houses as kids! Since my husband and I do possess certain similarities, it would not be fair if I kept myself out of this conversation. My mom said I was a pretty easy baby, but things changed when I was 9 months-old. I flipped myself out of my crib by grabbing on the outer bars and somersaulting onto the floor. They had to put a door over my crib to keep me in. Maybe I was too young to be trusted in a big-girl bed????I talked in sentences early and used big words. And...I cried the WHOLE time my mom returned to work. Not just a little bit...the whole time. My mom had to quit her job. My first memory is of wearing diapers at 18 months old and thinking, "I have got to get out of these things!" Granted, back then they were those terrible cloth things with the plastic surround. They hurt my pudgy little legs! Who remembers being in diapers? Probably someone with OCD and an abnormal memory recall. There is a theory out there that some of autism is a severe form of OCD or hyper-focusing on things. I have always had a problem with both. Sometimes I thought things did not match their name. My younger brother I renamed "Robison" and I do not remember why I did not think he looked like a "Mitchell". I liked things a certain way. My mom put up with me asking that the butter and jam be spread evenly to the edge of my toast. I had a fit if it was lumped up. I hated a lot of clothes...especially socks. The lint that collected in the corners of them I nick-named "loobies".
(I wasn't much for smiling)
As with my husband, there are parts of my brain that do not fit into the autism spectrum. Visual-spatial awareness is highly acute as is my sense of smell.
I have some weird electro-magnetic pull with the earth. I have always known where East/North/West/South is. I have insomnia with full-moons. When I heard that dogs always try to defecate on a North/South axis, I wondered if they sensed I have a similar electro-magnetic instinct to the earth and that is why they like me? I know what you are thinking and NO I do not poop on a North/South axis...anywhere is fine with me. My dad has the weird directional thing too as does my youngest child and they don't have to be facing North or South in the bathroom either...we just all possess an uncanny sense of direction. So far it has not been proven in the scientific community that humans possess the primal electro-magnetic pull to true North. There is a scientist who has invented some kind of FARADAY cage to try to prove some humans possess this uncommon sense. "The same candidate magnetoreceptors are found in humans. So do we have a magnetic sense as well? “Perhaps we lost it with our civilization,” says Michael Winklhofer, a biophysicist at the University of Oldenburg in Germany. Or, as Kirschvink thinks, perhaps we retain a vestige of it, like the wings of an ostrich." (www.sciencemag.org). I am thinking about volunteering for the Faraday box...but only if they do not make pooping on a North/South axis part of the cage experiment.
Whatever the reason, animals and I have always hit it off grandly. My mom says all types of animals, including a sheep named--BUCK BUCK---broke his pen down to follow me through the house. He left little sheep poops(they look like rabbit droppings)throughout the living room. We always seemed to have male guard dogs and they were overly jealous of my boyfriends. Our doberman, Josh, followed Dave and I on the bank of the Snake River anytime we went canoeing. The pit-pull named "Puppy" --we never could agree on a name---would growl and snap if he saw Dave and I cuddling. To this day, Dave refuses to own Dobermans or Pit-Bulls.
I know for a certainty that I am somewhere on some kind of spectrum. So, how did my parents cope? One summer my dad took me down to his business and had me polish his long line of restored automobiles (yes he had a fascination with different things during his life. There was his car restoration phase, his fish tank phase, his welding phase, his traveling phase...yes, he liked to line things up ). I still love the smell of leather seats baked in the sun and the smell of turtle-wax car polish. He knew I had to be kept busy, or I would get in trouble. He got me a job at a pizza parlor when I was 14 for the same reason. One time, my mom was praying for me. She was worried I was headed for an unhappy adulthood. After she prayed, she had an unusual answer. There was no "sensory integration" therapy back then...she felt impressed to get up early every day my 8th grade year and do my hair for me. I had never liked being hugged or touched much, but do you know I can still feel the tenderness of her hands on my scalp? The artistic strokes she used on a canvas, she translated into the bristles of a common hair brush. If you have never had your hair done by an artist before, you have not lived! The woman who could sew a dress out of thin air, cook a killer meatloaf with basic ingredients, and paint the color of a golden sunrise, could also communicate pure, unadulterated love through her hands. God knew this and knew I would feel her care for me. My hair-do's my 8th grade year from french braids, to high twisted chignons, were the envy of my class-mates. And...we bonded. Sometimes, when I am anxious, all someone has to do is play with my hair and I turn into an instant narcoleptic.
Here's my mom--referee again(top photo)
My mom sewed all our clothes(bottom photo)
My husband and I agree that therapies based with involvement from family are quite effective. God had answered our prayer, one day, by telling me to put our daughter with explosive Tourette's "on a horse". After she improved on a horse I did research that said some people develop more mirror neurons with equine therapy. Certainly the fresh air, sunshine and us cheering her on were therapeutic too. (Even though one time we had to chase her run-away horse through the Pahrump, Nevada desert in our Dodge Durango.) We figured if she could ride Missy, she could get a long with anyone.
My dad taught me to garden and let me play in the dirt. I was the navigator in the school-bus he converted into a motor home and he took us all across the country--encouraging my love of facts and history. He said we would get an education in that camper school bus too. My mom let me make huge messes in the kitchen while she baked. She let us use her art-supplies (supervised) ---art therapy and encouraged our singing--music therapy.
Did we have a perfect home? Heck, no! We fought, carried on, drove our folks nuts and each other bonkers. Dave and I have not had a perfect home either. Plenty of broken furniture, holes in walls, even in a house full of girls. However, you would be hard-pressed to find any girl siblings that stick up for each other more than ours do. All potential dating candidates have to survive the "sister" round-table interviews.
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