Tuesday, March 31, 2009

The Blame Game

When it comes to your kids, it's easy to take credit for the good stuff. For example, there is no denying that my son Max takes after me in the looks department. As you can see from this photo of me as a child next to a photo of him, we share the same pale skin, eyes, nose, chin, and smile. My husband Scott and I joke that he is such a physically robust child, he is our wee viking, a clear descendent from the Danish side of my family. He also has a stubborn streak a mile wide, which both my husband and I can take credit for, as Max embodies everything Taurus, just like us. But the Autism, where the hell did that come from? In the past I have joked that my son looks like me on the outside and Scott on the inside. Kind of mean spirited in retrospect, but my husband has a thick skin and (hopefully) knew I was kidding, sort of. I haven't found any research that conclusively proves the cause(s) of Autism. There is certainly a genetic component though, as once you have a child with Autism, there is a one in seven chance you will have another child with the disorder. So, whose fault is it then? We each have some quirky family members we could point fingers at, but perhaps the apple doesn't fall that far from the tree. What I mean to say is, maybe both my husband and I have qualities and characteristics that have created the perfect Autism cocktail. Let's start with me. I have major sensory issues. I am extremely sensitive to the light. My sunglasses have to be double tinted so that I can see when it's sunny out. I wear my sunglasses outside until the sun has set. Florescent light makes me crazy. This has been true my entire life. I remember taking a drafting class in high school (anyone who went to Unionville High School will recall the huge concrete shop rooms with the high ceilings and harsh light), where I had to get permission to do my work outside of class because the lights gave me migraines. I am constantly turning the lights off in my home, preferring natural light, and even then, the darker the better. And it isn't only light that is an issue for me. I am an auditory learner, so if there is too much going on around me from a sound perspective, I lose my mind. This is a challenge as my husband and his family are loud talkers, who carry on multiple conversations at the dinner table. I have trained my husband to pipe down, but the rest of them aren't so well behaved. Love them to bits but mealtime with multiple Carefoot males can be overwhelming to say the least. I am also incapable of carrying on a conversation if there is a television on in the background, or music playing. The list goes on. I don't like wearing socks, wool is a no-go, as are tight clothes, and the sound of someone cutting their nails makes me climb the walls. I am incapable of sitting still - either tapping my feet or my hands until Scott takes hold of whatever appendage of mine is flailing about and secures it. I don't want to out Scott and all of his eccentricities (seems unfair and overly critical). I will say that he is not the most social person I have ever met. Typically he won't pursue going out, but if someone calls him to say, watch a UFC event, he will usually go. I find that his default is to enjoy spending time alone, and while he can be the life of the party, this behaviour is largely manufactured so that others will enjoy his company. Our son Max shares all of my sensory issues. He is extremely sensitive to light and sound. He is a sensory seeker, and needs deep pressure on his legs and arms to help him self-regulate. He often does the typical hand flapping that is common with Autistic children and rocks back and forth when he is stressed. He doesn't seek out others to play, and largely enjoys playing on his own. Looking at Scott and myself, it makes me think maybe we both have some Autistic tendencies. When you add them together, it's not hard to see where Max gets it from, good looks and all. Katrina Carefoot is a working mom with two children, her son Max, almost 3, and her daughter Cameron, almost 1. She works as a Marketing Manager in Toronto and writes about Autism, pop culture, and all things mommy at Fickle Feline.

Sunday, March 29, 2009

Our Story is a Blur

As other parents recount the day that their child was diagnosed, or that moment in time where they understood something was wrong with their child, I am amazed at their power to recall the details of the time. I don't remember those details. Every day of my life since my youngest daughter's birth has been a blur. As an infant, she did not have a sleep schedule. She would be awake all night, or for hours at a time and often, she was inconsolable. We tried different formulas after breastfeeding. Nothing changed. We even had our chiropractor adjust her and there was a short lived reprieve. Maybe a day or two of sleep for the household? It is hard to remember anything other than the general. I don't remember loving this baby like I did my first. Yes, every child is different and the feelings associated are different also. But, this was....... different. The sleepless nights turned quickly to resentment and frustration and depression. Soon, we were lost in our own woes and stumped about what the baby's problem was. So, we just dealt with it. By the time she was three, my husband and I had separated. I understand this is common with parents whose children have developmental disability, but I had no idea at the time that it was a contributor to our failed marriage. When it was time for my daughter to enter pre-kindergarten, my older daughter had been doing great in school for several years, ahead of her peers in almost every subject. Everyone loved her and she was such a sweet girl. Her baby sister was almost the polar opposite. She barely spoke, had rage-full fits, and obsessive - like behaviors. I tried to explain this to the teacher at the assessments, but I didn't have the right words, because I didn't know the terms or even what they meant yet. I, along with her dad and gramma, just thought she was a little slower to come out of her shell since her big sister could (and did) help her with everything from talking to getting dressed. We simply believed it was a matter of not needing to express herself because she had someone to do it for her. At the first 9 weeks teacher meetings, we got a note requesting a special meeting. It was at this meeting that her teacher told us of her behaviors. Many of which we were familiar with, but it was still a shock to hear them explained to us from a classroom perspective. I wanted to cry. Maybe I did. Like I said before, the details are all fuzzy and run together. This teacher was kind, and I'm so grateful that she was, because without her kindness, we may have brushed her off as being a rude and pushy know it all. But, she really loved my daughter and wanted to help. She was instrumental in getting the first IEP set up and helping us to find further help for this child. Now, 2 years later, that child is still not comfortable in school. She still has lack of control over her own body and emotions. She is still rageful. It took nearly 2 years before anyone officially called her Autistic and even now, there is so much more to learn about how this disorder works. What will her life be like? Will she grow up to be a psychotic maniac, or can she possibly adjust to her environment at some point? Some adults with autism never do, and some can't. They become statistics of the system, jailed and imprisoned for their lack of control and ability to conform. Did you know that? Did you KNOW that? I'm afraid for my daughter, and I'm afraid of her. The rates are growing in relation to others like my child. I only wish I were alone. Jenn Brockman is a single mom of 2 girls, one on the autism spectrum and one with ADHD. She writes and hosts a radio program advocating for all special needs kids at Special Needs Kids Talk Radio while running her own mineral makeup business.

Thursday, March 26, 2009

Obama On The Special Olympics Bowling Team: My Two Cents

On the tonight show several days ago, President Obama made a joke. A joke that he undoubtedly quickly regretted. A joke that probably did not even register on the radar of most of America. But, a joke that engendered a strong reaction from many in the Special Needs Community. I have read many posts about the President's gaff. I personally was not offended and tend to give people the benefit of the doubt when they make an honest faux pas. I do, however, respect that there are people who were offended or hurt by what he said. They are entitled to express their opinions and feelings on the issue. My personal fear, however, is that some individuals are using the President's mistake as a license to rant about Obama as a person(i.e, making assumptions about his level of sensitivity and his overall attitudes) thus diluting the REAL societal issue. The man put his foot a bit in his mouth, no question. However, I personally feel his joke was not made with malice or intent to harm. I have no issue with accepting his apology without asking him to prove to us HOW sorry he truly is. A sincere apology, for me at least, always suffices. Really, this is not an "Obama" issue, but a societal issue. Namely, the normalization of certain words and jokes that devalue those with cognitive/intellectual challenges. Until the people in the 'Special Olympics' and on 'the short bus' are seen as human beings with VALUE in our society, nothing really will change. Many a punch line has been made at the expense of the cognitively challenged. Derogatory language regarding differently-abled individuals has become ingrained in our culture's common vernacular. Words like 'moron' 'idiot' and 'that's retarded' are common slang as are one-liners about 'riding the short bus,' or equating someone's abilities to "Forrest Gump." We scarcely give it a second thought, until someone we love is the one ON the 'short bus.' It is then that such comments take on a whole new meaning. When such slang or joking references are made, whether by a public figure or a friend, there are 2 roads that we can take. We can take it as an opportunity to stand on a soapbox and lecture on how and why we are offended. Or, we can create an opportunity to educate, enlighten, open dialogue and share pieces of our lives that help others empathize. To spread awareness. Awareness occurs on a grass roots level; planting seeds every where we go. Just as important as what we say is HOW we say it. Raising awareness can not truly work in harmony with finger pointing and personal judgements. We need to recognize that most people have little to no personal experience with people who have special needs. If someone comes across as lacking sensitivity to the issue, they need to be met with understanding and education, not criticism and a laundry list of how they are a horribly insensitive human being. Our first priority is to spread awareness, not moral outrage. What we are dealing with is an issue of ignorance (in the true, Webster's definition of the word) not intentional malice. And the best eradicator of ignorance is education. We are called upon to raise awareness. Awareness is best achieved by telling our stories, one at a time, in any venue to whomever will listen. People don't want or need to be lectured. They don't want to feel like we're humorless. They don't need to feel humiliated and infantilized for their unintentional mistakes. They don't want their motives to be judged with undeserving harshness or have assumptions made about their character. So, what do we do? Ignore it? Laugh with them? Accept it? No. Spread awareness, but awareness free of negativity. Not focusing so much on why we are offended, but on humanizing the lives of those with Special Needs and the people who care for them. We plant a seed when we share, one at a time, and awareness begins to grow. Let us spend less time judging the hearts of others and more time sharing our own hearts and experiences. Free of stone throwing. Free of character assumptions. Full of love for our daughters and sons who we are defending, suppressing the urge toward righteous indignation. Raising awareness is our task. Let us do it with thought and sensitivity; choosing our words with the same care we expect from others. Let us not forget that fairness and forgiveness are two-way streets. Alicia D. has a doctoral degree in Clinical Psychology, is the stay-at-home mother of 4, and her eldest has autism and other disabling conditions. She has upcoming publications in Today's Caregiver and Autism Spectrum Quarterly. She blogs about motherhood and life on Welcome To My Planet.

Sunday, March 22, 2009

The Word Doesn't Change the Kid: Autism 101

As a new author of this site, I thought I'd start by introducing myself. My name is Jeannie and my six-year-old son, Mr. Busypants, has mild autism. Below is one of my earliest blogs. I thought I'd start off on this site by sharing my story about when autism entered my life and what having a child with autism means to me. Miss Chattyshoes is interested in all things potty. The other day she stood over the toilet to say "bye-bye" to its flushing contents. Suddenly her nuk popped out of her cheeky little face, instantly sucked down to the point of no return. Perplexed and concerned, she pointed to the toilet and begged for "ki-ki." At this young age, Miss Chattyshoes is already declaring her independence. She does so in many ways, but the most obvious is her reaction to peer influence. One of her best buddies is M, a neighbor from across the street. M is 7 months her senior and full of words and wisdom. For example, we've been calling Miss CS's nuk a nuk for 18 months. She spends one day with M and her nuk is now a ki-ki. The same goes for her sippy cup, which was just that: a sippy cup. But M calls it a ba-ba, so now Miss CS calls it a ba-ba. What I knew about autism came from two sources: the movies (specifically Mercry Rising and Rain Man) and a film we watched in the 6th grade (so bizarre that I even remember this particular film) that described autism as a condition where the person was lost in his own little world and behaved like a chimpanzee. The other tidbit I knew of autism (or thought I knew) was that one day a toddler was talking and engaged and seemingly the next his social and speech skills were lost. This was autism to me. And so I began working through my fear that one day my baby would wake up and be mentally, emotionally and socially gone. With me, Mr. Busypants had a boisterous laugh that filled the house. We spent hours running around our house in Lisle, circling through the kitchen, dining room and living room, hiding and seeking, stomping and giggling. With others, he was stoic and serious. When the word autism re-entered my vocabulary, fear as I had not yet known it came as well. It took a while to work through the anguish. For me, the first step was recognizing what autism was and what it wasn't. The DSM-IV defines autism as (I) a) impairment in social interactions marked by a lack of eye contact, facial expression and social gestures. CHECK. b) impairments in communication manifested in a delay in spoken language and (later) repetitive language and a lack of spontaneous make-believe play or social imitative play. CHECK. c) restricted repetitive behavior patterns, interests and activities including preoccupation with balls and matchbox cars (CHECK), inflexible adherence to routines and rituals including but not limited to eating French toast sticks every morning two years, throwing a sippy cup and all unwanted food off the high chair tray, being hypnotized by spinning objects such as ceiling fans, and flicking objects such as door stops for extended periods of time (CHECK CHECK CHECK CHECK). Stereotyped and repetitive motor mannerisms including head shaking, picking up every stick within a 2 mile radius at the playground, and general Monk-like behavior (think 2002 series appearing on USA about an obsessive-compulsive ex-cop who solves crimes) (CHECK). DSM-IV does NOT describe autism as: (a) futureless (b) hopeless (c) relationshipless (d) joyless (e) speechless (f) loveless In a nutshell, the word did not change the kid. Mr. Busypants is spectacular. You need only look into his eyes to see the wheels turning--the thinking process is like a roller coaster ride. Fast, intense, thrillseeking. It's all there in those bright, blue eyes. He sees things we can't. He organizes. He engages. He responds. He follows through to completion. I fall short on all of the above on a semi-regular basis. From the early age of 21 months, Mr. Busypants had a fascination with water. He couldn't hear me scream his name two feed away, but turn the bath tub on three houses down and he was there in a flash. Part of that fascination extended to the toilet. A week into our new Aurora house, he too "broke" a toilet. Though Miss Chattyshoes hovered over her daddy in the master bathroom as he diligently retrieved her invaluable nuk, I mean ki-ki, from this vital household fixture, Mr. Busypants had dad replacing the first-floor toilet after flushing a mega-block. This kid is larger than life; he thinks big. Jeannie Anderson is a stay-at-home mom with two children, Mr. Busypants, 6, and Miss Chattyshoes, almost 2. She is a part time college-level writing instructor at three Chicago-area colleges and writes about the Adventures of Mr. Busypants at Mama Busy Pants.
Reblog this post [with Zemanta]

Tuesday, March 10, 2009

Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.
Reblog this post [with Zemanta]

Monday, March 2, 2009

What's The Point of School?

The following is in response to a comment made on the last post regarding homeschooling for autistic kids. It refers to a comment from a special education teacher. Go read it, first. Califmom's response needed to be its own post.

Sorry to be petty here, but if the argument to send my child to school is being put forth by a teacher who has more grammar/spelling mistakes in his comment than content, I have a difficult time swallowing that pill.

However, I'm a bigger person than the product of my (formally schooled) environment. So, I'll bite.

What I read in Mr. Black's comment is that my son should attend a formal, school setting in order to experience poor treatment by his age mates and failed social situations, which will then require the support of a team of professionals.

This scenario is seen as superior to providing my child with social experiences outside the academic setting, where stress is lower, and success is higher, which then result in positive experiences in the building blocks of his social competence.

Underlying all of this is an assumption by Mr. Black that I, as the parent of the child, check my opinions at the door, trust the system, and let the professionals do their job.

Mr. Black, just so you know, we were not always homeschoolers. We didn't even choose this path, initially.

In fact, for over 7 years, my children attended an expensive, award-winning private school that touted its ability to address special needs.

My personal educational background is in child development and elementary education.

We did not arrive at our decision to homeschool because we had some idea that it would be a great way to exclude our child from the artificial construct we currently call our schools, an institution largely existent as a remnant of the Industrial Revolution and the requirement that we produce a society of factory workers with a similar world view--followers, non-thinkers, non-questioners.

We arrived at this decision via a difficult path, but we are beyond pleased with the results we see in our children. More, our family and friends are impressed with the change they see in our children.

You see, nowhere else are we grouped in such an artificial fashion as we are in a traditional school setting. Children are grouped by age, and often ability (or disability), and then expected to derive value from this socialization.

I have yet to find a workplace (the argument most put forth for a school-based education is to 'get a job') comprised of same-age coworkers. Have you?

Aside from prisons and psychiatric wards, nowhere else do we lock people in for the day and attempt to control their behavior. Seems odd that we expect only 1 of 3 of those scenarios to be appropriate for all members of our society.

I want more for my child, and I have the ability to provide it. Maybe it's not what everyone can provide their child. Maybe it's not the right thing for everyone, but it is what is meeting the needs of my children and our family. It's also the beauty of living somewhere that provides us this freedom.

If you really want to boggle your mind, Google unschooling. That's what we do. I'm guessing it'll make your head fall off, but maybe it will just open your mind.

Because of her son, califmom knows more than she wants to about Asperger and Tourette Syndromes. She doesn't think autism needs to be cured. She does think that autistic spectrum disorders are more likely orders--another way of being in this world. Visit her at califmom and califmom homeschools.