Monday, November 2, 2009

A Cop Out Post

I have a post I started writing the other day, about therapies and who should choose when it's time for discharge from therapy, however it's not done, and I had to write a paper for my English class, so here ya go. It's Jaymes and autism related, so it's not such a bad cop out I guess. Did I do good? What grade would you give me? I have all 100's on my papers in that class except for one, it's a 97 and that pains me... Pains me I tell you. Anyway, without further ado:

Our son was diagnosed with autism on November 11th, 2005. He was two months shy of his third birthday, but he had still not said his first word. Instead, he screamed and grunted or zoned out entirely and ignored the world around him. His idea of a good time was to lie on the carpet in his bedroom and stare at the ceiling fan. We went into the Early Steps office already somewhat educated about autism. I had started researching his odd behaviors, and had quickly realized that he showed nearly all the signs. He was a textbook case; it wasn't a hard diagnosis to make.

My husband and I reacted very differently to the diagnosis. I had been expecting it, and being more practical than emotional, threw myself into researching treatment options and information. I started scheduling therapy sessions with the local physical, occupational, and speech therapy centers. My husband, on the other hand, was firmly in denial. The very first time I had mentioned the possibility of autism he had laughed at me and said of course Jaymes didn't have that. He was fine. His opinion didn't really change, even with a formal diagnosis. He decided that the doctor was a quack, just looking to make more money off a late bloomer of a child and his gullible mother. In time, Jason did come to terms with the diagnosis, but that created its own set of issues.

I've read somewhere that statistics show a large percent of marriages fail due to having a special needs child, and I can understand why. Jaymes' autism did have a huge effect on our marriage. My husband and I disagreed (and still often do) on the best course of treatment, on how he should be disciplined, and about money. We fought endlessly over how Jason was supposed to keep a job if I had to take Jaymes to all these appointments. He was not even sure there was any point to the therapies, and at some times wanted me to stop them all and let Jaymes be whoever he was going to be. We fought because I could not work. No daycare center would take Jaymes, and he had 6 therapy sessions per week. Every job I had, I lost due to my excessive number of absences and sick days. Autism started the whole unravelling of our marriage.

My life began to revolve around Jaymes. I couldn't work, and he had not started school yet, so we spent all our time together. My husband worked more and more, so I barely saw him. It was at that point I really began to live and breathe autism. I read about it online every chance I got, I went to therapy sessions and autism playgroups and even the autism parents support groups. I realized that I really wasn't like most of those parents, because they all talked about autism as if it were a curse and a horrible thing, that their children were flawed and ruined as a result. Life with my son was hard on us, but I guess in my opinion Jaymes was who he was. I chose to go with that, and try and develop his skills rather than obsess over the child I never had. Being sad didn't do anything for Jaymes, so I didn't see a point to it. There were times, though, that I got too into the reading. I kind of lost sight of the child, in my eagerness to learn more about the diagnosis. It was a hard realization but one that helped me see that I needed to get off the internet and spend more of my time and energy on my kid.

When Jaymes was three, I got pregnant with my daughter, Sierra. If you think going through a pregnancy with a typical three year old to take care of is difficult, you cannot imagine going through a pregnancy with an autistic three year old. Around 25 weeks pregnant, I slipped and fell while chasing Jaymes, and broke my tailbone. The impact also apparently set off preterm labor. I was put on bed rest, with instructions not to get off the couch for anything but the bathroom. Of course with Jaymes, this was impossible and I had to be active. I went into labor again at 28 weeks. This time they had a lot of trouble stopping it, so they transferred me to a hospital an hour away that had a NICU. They needed me in bed and monitored, with an IV that ran drugs to keep labor at bay as long as possible. Obviously Jaymes couldn't stay with me at the hospital, so my husband had to take a leave of absence from his job until I was discharged. They sent me home at 30 weeks, and a few days later I again went into labor. This time they couldn't stop it and Sierra was born, weighing just around four pounds. Surprisingly she did not have any issues other than her size. I can't help but wonder, though, if my pregnancy would have gone smoothly if Jaymes had not been around.

As he got older, Jaymes developed little quirks and habits that slowly changed the way the entire family did things. We no longer used umbrellas, because he was obsessed with them and would go into tantrums that lasted hours if you took one from him. We panicked at the thought of sitting in a doctor's waiting room on a rainy day, because we knew there would be umbrellas galore. Another change involved where we went to eat out. We learned over time that Jaymes has a very hard time with small, crowded spaces. So KFC was out, because the combination of a tiny restaurant and lots of noisy customers was overwhelming for him. Instead, we went to places like CiCi's pizza. CiCi's pizza is perfect because it has a huge, open dining area and there aren't usually a ton of people there.

I think the biggest effect Jaymes' diagnosis has had on us is in how we think and react. When I see a kid in a store screaming, I no longer immediately think "wow, that kid is a little snot. Look at him having a fit." Instead, I wonder to myself if the child is special needs. Autism is one of the more difficult disorders, because it's invisible. Unless you know what you're looking for, an autistic child just seems like a horrible little brat, when in reality they are highly sensitive kids who are trying their best to function in what is often an overwhelming environment.

Jaymes taught us to stop caring what other people thought of us. I used to be so afraid that when he had a meltdown, people would look at me funny. Now I just shrug it off and keep walking, or I explain why Jaymes is doing what he's doing. He doesn't embarrass me, and I don't keep him hidden away at home. We're out every day; he is part of the family doing the same things any regular kid would have to do. He goes to the grocery store, the video store, the mall. He comes with me to the Social Security office, or to the doctor, or wherever else he needs to go. He's taught me that there is only way to really secure a place in society for people like him, and that is to involve him in every possible way.

All in all, Jaymes' autism made our family a better one. It's because of the trials and tribulations we have faced that we have grown so much stronger. I know that I've grown tremendously as a person. Doing what I needed to do for him helped me go from being an incredibly shy person who could not even make phone calls or walk into a store alone, to a mom who can sit at an IEP meeting and assertively make the decisions and push the limits to get Jaymes what he needs and what he deserves. I thank God every day for bringing the little guy into my life, and I can't imagine life without him.


kristi said...

I loved reading this. Really, I have always been a loud mouth but now I have to be an educator. It is great fun. LOL.

PS my word verify is booty (cackle)

Adelaide Dupont said...

Would probably give you at least an 85 which is Distinction around here.

Kelley said...

I could have written that.

Except MPS and I didn't fight. He just worked a lot and left it all to me. Which, in hindsight, is probably just as bad.