Tuesday, April 23, 2013

Living with a child with autism

Autism. It consumes my day, my night, my life. 

My son was recently diagnosed with Autism Spectrum Disorder as he turned three years old.  My world crumbled. What does this mean for him? What will happen to him? Will he be able to go to school like other children, attend prom, go on to college? What about marriage and meeting someone who he can share his incredible self with? What can I do? All these questions flooded me and honestly crippled me at the time of his diagnosis.

This was only two months ago and I have to be honest, these questions have not been answered and I live in a constant world of helplessness.

Joe requires IBI therapy to teach him skills that come naturally to most of us. Skills such as self-regulation, conversation, empathy for others, and much more. This therapy can cost up to $100,000 a year, who can afford that? The government does recognize and fund this program, but the waitlist is 2.5 – 4 years to receive this government funding. The government also recognizes that early intervention is the best, and that is considered between the ages of 3-5. My son was lucky to be diagnosed at an early age, most children are not diagnosed until they reach school. Doesn’t make a whole lot of sense does it? If early intervention is the best, why not fund it early, rather than wait until the child turns 5 when the damage in the development has gone too far?

For now we have decided to go with the minimal amount of therapy that we can afford and hopefully we will see improvements, but only the future holds these answers.

My son is amazing and I cherish every moment with him, some good, some not-so-good. He memorizes books and songs after only hearing them a couple of times. He is obsessed with numbers and letters, I don’t think it will be long before he is reading and practicing his math skills. Although he lacks some skills, he excels in other areas. He is affectionate and caring and completely adorable. Of course, I am his mom and I love him so much, I have never felt love like this in my life.

I guess I am hoping to answer some of the questions that people ask me when Joe is melting down. It could be in a grocery store, a playground, or even at his preschool. Please don’t judge him for the things, that he cannot help. It is not that he doesn’t get enough discipline or I spoil him rotten. It is that his brain is programmed a little differently and some things can be overwhelming for him. This was the hardest thing for me to learn about him and I hope I can help others understand the difficulties autistic children face every day of their lives.