Shannon Perry

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Katie's Rocket Ship

Katieís Rocket Ship 
By Shannon Perry

I watched my son playing in our TV room last night. It made me laugh, and in some ways made me cry. My son was playing with my older daughtersí dolls and baby bed set-up. He would pick up the doll, carry her about on his shoulder as if she were a real infant, just like his dad does with his baby sister. He would pretend the baby was still crying or that she was going to sleep and being fussy about it. He pretended to check her pants and announced to us all, " He stinky!" He changed her clothes and then put her to bed rubbing her buns and talking quietly to her . All of these things he has seen his daddy do. I think of the times he pretended to be "Tigger" and bounced down the stairs until he broke his collarbone. He pretends to fly or drive. He brings me Lego flowers, primary coloured rockets, and trucks with Indian tent doors. Watch out for the terror on the tricycle! hugging the cat and making the dog dance about, barking as Alex pedals from room to room. The next thing I know I have a puppy-boy under my dinner table, sitting up and begging. What makes me sad, and crying inside about all this normal bouncy small boy behavior? My oldest daughter never did these things. My oldest daughter never played pretend. It didnít occur to me this was a problem until a few months ago. I didnít understand until that moment there was more than just social awkwardness and administrative labeling going on here.

How does a parent know when to look for help? How does a parent even know that the quirks personality of a child is more than just environment? I donít know. How does it affect a child who knows they are different but donít really know why and cannot get a handle on relating to others? What does this do for the childís self esteem? How does this affect the family? What kind of mother am I, that I didnít know there was something wrong with the picture? When does a parent know that the reasons that this beautiful, bright, shining star has more going on than a difficult adjustment to school and other family issues? When are the teachers and psychologistsí right? When are they wrong?

We found out three years ago my oldest daughter, has a form of autism called Aspergerís Syndrome. Welcome to Katieís roller coaster through life. Welcome to her rocket ship.

Oh my god! My beautiful, perfect, happy, no-trouble baby is not perfect. She canít have autism. Thatís just another label to cover behavior people canít explain away. She acts differently because, because we spent five years overseas. She was in the British schools learning things their way. We moved seven times in seven years with the military. Thatís why she has developmental delays. See she walks and she can talk clearly and she knows all these words. They are just being stuck up. The teachers are looking for an easy way to control their classrooms. Iíve read about how sooo many kids have been overmedicated. Thatís whatís going on. My ex-husband was on Ritalin as a child. It sure didnít help him. His parents were clueless. Sheís acting this way because of the divorce! Yeah thatís it. Iíll go along with this, nod and agree, if it gets her the education she needs to go to college.

Katie, why canít you get this? Why do I constantly have to watch you just so you can complete one simple task? Why am I always yelling and spanking? I canít spank you every day for every time you do something wrong. I donít want you scared of me. God help me! This isnít what I want for you! You are hurting other people. You are hurting yourself! Iím failing my daughter as a parent! I donít know how to help my baby. What am I going to do? Katie you need to stay on this planet. No dream ships for you right now, baby.

We have gone forward since the initial diagnosis. I went back to the doctors, ready to listen in January of last year. I bought books to read to help me understand better. I went to her instructors and her school counselors. I researched on the Internet. I asked them all what should I do to help her. I read. I read some more. Iím still reading. Iím reading more things, again and again. I quit spanking, most of the time. I forget sometimes and struggle with my frustration, anger, and fears. I searched for different forms of discipline that were more constructive. I accepted that Kate has to be on medication, every day, but I hate it. A highly structured life-style, schedules, immediate accountability, supervised and encouraged friendships are key elements to her personal growth and future. I have to accept that I will always be in my daughterís business. No matter how much I hated the strictness of my parents and the structured regimen, so military in mindset, that we must maintain, it is what these people tell us are in her best interest. So we do it. I am struggling to teach her how to navigate past the wormholes, not to crash into the space debris, how to follow the checklists doing step one before step five. I wonít always be here to sort things out for her.

What about the rest of our family? Amber never really pretended until she was four. She was and is a very serious and sensitive child. I t is often difficult for her to understand that things Kate says or does arenít intentionally mean or thoughtless. She is struggling with issues of being the younger sibling that often has to act like the older one, as well as just being a really smart third grader. Alex is a very exuberant, confident, and jealous of baby sister, normal little boy. Katieís issues affect him differently in that she can reach his level more easily than the rest of us in play. For him, some of Kateís lack of maturity gives him a perfect playmate. Jacqueline is a happy, laid back, busy, nosy one year old. For some reason, usually Kate can calm her. Kateís problems weigh heavy on all of us at times though. I have little time for myself. I struggle to go to college and attend classes. A bad morning for her blows my getting to class, because she canít even handle her own classes. Someone has to take care of her. A bad night for us, and weíre lucky to get fed and to bed, much less studying or writing papers. My husband tries to hold down a full time job and go to school too. We know that we have to plan for the future. Itís a race against time to try to earn a sufficient income to make sure she will be taken care of when we are gone. Kateís biological father has denied the now, five-year-old diagnoses and recent evaluations. Our goals relating to him have evolved from trying to force inclusion in her life to damage control and working to limit his access and influence until she is able to handle him on her own. I have learned so much on the law relating to the rights of minors and non-custodial parents, and disabilities. Not much support legally in those areas unless you have an attorney that is knowledgeable in neglect and emotional abuse issues and a judge who understands that a treatment plan is just as valid for a learning disorder as it is for a child who has diabetes or is in a wheel chair needing dialysis or some other obvious medical issue.

Most parents spend their time fighting the school system to get services and support for their children. Getting recognition of diagnosis is one thing, it seems. Now, getting treatment is another, in appropriate fashion. From what I have read and determined by many interviews from many sources, once you have a diagnosis it is acceptable to warehouse children into special education classes rather than actually try to teach them something. Fifty years ago, children with learning disorders would have been institutionalized and forgotten. It seems today, that they are just forgotten in some classroom to be contained until the parents can come and get them again. Now however you can fight that with the Americans with Disabilities Act. Itís just that you canít fight parents who donít want to help their children with that law. You have to be sneaky. You have to approach it under child endangerment and interference of prescribed medical treatment. Nailing the medical profession down so that a parent can enforce a treatment plan, whether itís a school or a non-custodial parent, is a challenge to say the least. From our experiences, psychiatrists and psychologists are the worst about putting anything in writing. We persist though. Every day I learn something new. Every day I try to remember what we have achieved and what our goals are, because Katie is doing better now than she was five years ago.

Personal relationships are difficult areas for Katie, but we have bright spots of sunshine. Kate has friends who are brave enough to stand teasing for her unique perspectives. We never expected our children to be the most popular people in their classes. Sometimes though, itís painful to listen to her when she doesnít understand why someone she thought was her friend doesnít play, with her any more. I hear from other place that the person to whom she is loyal to has been unkind. I hold her, while she cries uncomprehending tears. I celebrate the children that invite her over, throw her in the pool, and just enjoy her. I am glad of the ones willing to be mocked, teased, derided, for a friend because they have the character I want her to learn to appreciate and imitate.

She is an A-B student who happens to be a good dancer. She is a state level distance swimmer with one of the local year around teams. I appreciate her coachesí patience and encouragement. She had the most beautiful voice. Her teachers tell us that she is musically gifted. How I wish I could afford to develop that.

We still have lots of issues. How will we get through adolescence? I know she has some interest in boys like many of her peers. I want her to be able to approach relationships with stability, security and be strong enough to walk away, or put that jet pack on and fly as fast as she can to a safe port. I want her to dream her dream ship dreams and know where home is.

Weíll be okay. Some days are rougher than others though. My husband reminds me when I stress too much, too long, that now, Katieís bad days, are what we considered good days, before. These days the rocket ship gets off the ground, without exploding on the way up. We actually make the trips out and come back safely on an almost daily basis. Some day Kate will leave our orbit, and travel to other worlds beyond, and sheíll be okay. I have to believe that.

©  Shannon Perry

GO TOP

"We each have our own way of living in the world, together we are like a symphony.
Some are the melody, some are the rhythm, some are the harmony
It all blends together, we are like a symphony, and each part is crucial.
We all contribute to the song of life."
...Sondra Williams

We might not always agree; but TOGETHER we will make a difference.

 

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