You know how people say to you, “Oh, I gave up having birthdays!” or “I’m 39 and holding!” – – well I did, too, but not for the reason you might think. I don’t mind getting older, not at all. [On April 2nd I will be 46-years-young! My mother died when I was just five years old. She went into labor on April 1st and told everyone I fooled them because I came out April 2nd!]
You see, my birthday was destiny.
On April 2nd there is only one thing I want! I want 100% of my family and friends to focus on the fact it is Autism Awareness Day – a passion of mine I like to share as often as I can.
I am the mother of a child (who is now an adult!) with autism and it’s been the most wonderful and rewarding experience of my life. Jenna came into the world pretty much on-time. She was quiet, never cried, and had the patience of Job. She was trusting of everyone. We never thought too much of her quiet nature. though. We thought that was her gift!
I almost died four days after having Jenna. I had a pulmonary embolism which completely shut down my entire right lobe lung and half of my left lobe. It took almost a year to fully recover. After that, we decided not to have anymore children so this was going to be my grand finale!
When Jenna was still unable to speak at three, though, we started to get a little antsy waiting for those words and sentences to just come flying out. Later that summer, she did start using a few words here and there, but nothing too structured. What did we do? Well, of course, we ignored it! We were her parents and she was perfect!
It wouldn’t be until kindergarten that we would find out something was “off”. When other kids were tying their shoes, running on the playground, and enjoying structured-play, Jenna could only handle shoes with velcro, her feet didn’t pronate normally and she would fall a lot as her gait was off, and she spent a lot of time alone. Happy, but alone. We were getting phone calls left and right from the school, “You really need to have your daughter evaluated.”
I guess you can be TOO quiet.
For all intents and purposes, Jenna was “normal”. Yes, she was quiet, but aren’t kids allowed to be quiet? We schlepped off to the pediatric neurologist’s office and test after test came back, “We think Jenna is a classic example of Asperger.” We didn’t even know what that meant. The doctor gave us a lot of literature and we quickly came to realize our daughter was “on the spectrum”. What? We just wanted her to be “normal”. What did we do to cause autism?
Autism Speaks proved to be an invaluable resource for us during this time. We found out from their counselors that we didn’t do anything to cause this and to be honest, they really aren’t sure why some kids have this and others don’t. So, one in 88 children ends up with autism. Why did we have to be the one? I didn’t want that responsibility! But here we were with a decision to make – what do we do to help her?
She just wants to be like you.
We found out that Jenna enjoyed being read to, but she wasn’t able to read a book independently or write a book report. So my husband and I started reading to her – all the time!
Jenna also prefers lights being off – the glare overstimulates her eyes and she can often be found sitting in the dark watching television and even looking at books and pictures with just a nightlight. Amusement parks were too much for her at a young age and she would recoil from things like loud noises, extreme temperatures, and she has a pretty bad case of OCD to boot.
However, we persevered. We found out she loved baseball and so we signed her up! She was the only girl on the team. The coach of that team insisted she could do the work and praise God for volunteers – be sure you thank them…and often. That coach worked with her until she could finally catch a ball and they made concessions to allow her a base run as long as she tried to bat. The other teams were very understanding. I don’t know what I would have done all those years without teams of people being patient, understanding, and encouraging. During such frustrating moments, so many people showed us grace.
Guess what, though?
We often here about children wth autism, but what about the teenage years? What about adults with autism? Like cute puppies, these kids grow up. My husband and I are both planners by nature and we decided this child was going to be a functioning adult in society. We didn’t know what that meant, but we headed down that path.
We told all her teachers to start cutting back on her assistance. She can get to class without the extra minute. If she’s late, she gets in trouble. We started doing more paper tests with her versus verbal. This was the most difficult thing Jenna encountered. She struggles with words on paper – they all seem to swim together. She also got paired up with an amazing special needs teacher who started working with her in ninth grade and followed her through her senior year.
So what happened to Jenna?
We are now the proud parent of an almost nineteen-year-old young woman who: drives, has a job, reads books by herself, has friends, exudes confidence, is finally able to make eye contact when she talks, and has long-term plans.
All of this is possible with autism and in spite of it.
We just needed a support system, resources, and encouragement. This is why every April 2nd I don’t care about my birthday. Instead, I share this story over and over again to shed light on the topic of autism and all the possibilities these children, teenagers, and adults have available. We just need to give them opportunities to share their gift.
Be a person of action – What are you passionate about? Do you share your passion with others? Own your involvement in organizations. It helps you develop the right kinds of relationships over time and may introduce you to a whole new tribe of people who think just like you!