Saturday, 22 May 2010

• Single Parenting and Autism

  

  My son was officially diagnosed on the autism spectrum with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) at the age of three, after three years of demonstrating abnormal behaviors and development. As if the process of getting an autism diagnosis is not difficult in and of itself, getting it done as a single parent takes things to another level.

  During the process, Elijah had tubes placed in his ears, got kicked out of preschool, started occupational therapy for the symptoms that also fell under the Sensory Processing Disorder diagnosis, and took a great deal of time and attention away from his big sister.

  Single parents dealing with this diagnosis bare all of the added responsibilities on their shoulders, and often have little to no support to help them get through it - all of the journaling, all of the doctors visits, all of the meetings with teachers, all of the time off of work, all of the out-of-pocket expenses, all of the worry, all of the guilt, and all of the tears.  

  After three years of knowing what was coming, I was surprised at how unprepared I was when those words got handed down to us. I walked in there hoping to be proven wrong, but instead, left the doctor’s office with a life-changing and life-long label on my son, a handful of prescriptions for therapies, and a list of Applied Behavior Analysis (ABA) therapists, dieticians and nutritionists, financial advisors, support groups, special needs schools, and other resources.

  I cried and called my mom on the hour-long drive home, and hit the drive-thru of the kids’ favorite fast food and milkshake eatery for dinner and dessert. I looked through the information packet and remembered thinking how great it was that I had all of this information and that I had done so much research already. I held my little boy for as long as he would let me (I doubt it was even five minutes) and decided to just breathe for the rest of the day and not start making any calls until the next day.

  The next day turned into a couple of weeks as I found myself in denial, riddled with guilt, and overwhelmed with having to explain his diagnosis to friends and family. I looked through the information packet several times a day, trying to figure out where to start. It was pretty straight forward, but when I saw it sitting there in front of me, it seemed like more than I could handle.

  Occupational therapy twice a week, speech therapy once a week, hippo, aquatic, and music therapies once a week, ABA therapy between 25 and 40 hours a week (at a cost of about $160 per hour), family therapy, a mix of special needs and regular preschool, an expensive organic diet… When would I have time for my 40-50 hour workweek at the job that keeps the roof over our heads? How was I going to pay for this, especially if I have to work less? What about my daughter and her afterschool activities and quality time with mommy? (Clearly, a Disney vacation was never going to fit in to the equation.) And why was almost every resource on the list an hour away from our home?

  After a few pep talks from my mother, I started making my way through the list, which turned out to be pretty discouraging. One place after another got crossed off because they had no place for him in their schedules, the funding for their program had run out, they weren’t covered by insurance and their hourly rate was far beyond what I could afford, or they were simply too far out of the way.

  After awhile, I started to make some progress. I found an ABA therapist, but I had to work the services into an already tight budget. My son was already in daycare and my daughter was in after-school care, which any parent knows can eat your paycheck by itself. Canceling cable TV and internet service, getting rid of my home phone, and reducing the minutes on my cell phone were the first options. But I found myself still having to choose between the organic diet and the behavior therapy or compromising on both.

  The biggest frustration any parent faces is not being able to help their child. There is no bigger feeling of failure than looking at my son’s needs and not being able to provide them. These senses of frustration and failure quickly turn into depression when you have no one to share the burden. After awhile, you learn to repress all of that and just try to get through, one day at a time.

  With all of the treatments available, you still won’t see changes and improvements in your child right away. You experience failure after failure with behavioral and OT techniques before your child has a breakthrough. And if your autistic genius is anything like mine, he or she seems to always be two steps ahead of you and will just create a new behavior to replace the old one.

  If you’re anything like me, the behavior therapist telling you to take five minutes for yourself, even if you have to lock yourself in your room, is much easier said than done. And if you’re child is anything like Elijah, he or she will bang on that door the entire five minutes (while you cry) because of their strong need to control their environment.

  Every day of post-diagnosis life, you will deal with the frustrations of not being able to “fix” your kid. There are times when your child is so out of control, it becomes painful to watch, yet nothing you do makes it any better. Elijah’s developmental pediatrician made an interesting observation and did a great job of explaining it to me. Elijah goes from being happy or excited to being angry or upset without ever stopping in the middle. There is no progression between polar opposite emotions, and this goes on all day, every day. He has no control over this lack of emotional homeostasis whatsoever.

  In order to try to control his emotions, he tries to control his environment. He will come sit down on my lap and say “Hi, mommy.” But instead of letting me respond on my own, he will tell me to say, “Hi, Elijah. How are you?” If he knows what I’m going to say and that he will like what I say, he will not get angry or upset. And if he can control everything in his environment, he can stay in one emotional state without the physical exhaustion of emotionally bouncing around like a ping pong ball.

  The biggest parts of my job as Elijah’s parent are trying to predict his reactions to environmental stimuli, and trying to prevent him from having those agonizing shifts in emotion, while trying to negotiate him away from emotional extremes and closer to the middle. All of his other behaviors are the result of this central issue.

  In addition to all of this, you have to be prepared to fight for and defend your child to almost everyone who takes issue with his or her “odd” or “unacceptable” behaviors. Autism families get kicked out of movie theaters, restaurants, and off of planes. We get judged in store aisles when our children have meltdowns. We get judged in our communities, and by family members, friends, educators, and employers. We get judged by our other children, who truly get the short end of the stick.

  And the single parent of an autistic child has to take more than anyone. This is the parent who likely has to choose between their job and government assistance as a means of providing services for their child. This is the parent whose child is more likely to slip between the cracks in the first place. This is the parent who has the smallest support system in place. This is the parent who has the fewest shoulders to cry on and no equal hand to hold through it all.

  URL: http://www.theaccidentaltherapist.com/2010/04/mommy-diaries-autism-part-2-autism-and.html

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