Sunday, April 19, 2009

The Power of Faith

Even though I don't believe in an Almighty God, I find myself continually both surprised and impressed by the power of faith. Most recently, this power was conveyed to me via a story from a high school teacher of mine, who's son is afflicted with autism. It is a story of struggle, family and strength through faith in God, and while I cannot personally understand or relate to the feeling conveyed to her through God, the story is nevertheless one of the most touching I've read, and I now have an endless respect for my former teacher's strength and dedication to her family. After receiving her permission, I would like to share it with you. Please enjoy.

What My Son With Autism Has Taught Me

Autism. What an awful word – kind of paralyzing, isn’t it? Kind of like Cancer, or Deformity, or White Sox (kidding, kind of…). When your child is born, you don’t want any of these words associated with your baby. After all, your baby is the total manifestation of all your hopes and dreams for the future. Those hopes and dreams don’t include concepts such as “different”, or “special needs”, or “life long condition”. I know I certainly didn’t expect my kids to be anything less than “perfectly normal”. After all, didn’t Erik and I already pay our dues with his cancer diagnosis all those years ago? Surely that was the only big trial we were expected to endure.

Life would be great from there on out, right? Seemed like it when Katy was born. She was “perfectly normal” – a little colicky, sure, but wonderful all the same. Smart, funny, well behaved, potty trained before 3, reading early – check, check, check. Surely we had this parenting thing figured out. Then came Jayson – a son! One boy and one girl – the perfect family. Katy was so good, now it was time to watch Jayson become a model little boy. Well, I certainly had life all figured out, didn’t I? I’m betting this is where God decided to teach me a few things.

Summer 2007, otherwise known as the “summer from hell”. I could not, for the life of me, figure out what I was doing wrong with my son. He had constant tantrums, some lasting for over an hour. He would wander aimlessly into the street no matter how many times we yelled, threatened, or spanked him. He never looked us in the eye and seemed to be in a trance half the time. He wouldn’t attend story time at the library or any other activity. He only wore certain shirts. Don’t even get me started on the potty training – he wasn’t even close. To make things even worse, he seemed to have no playmates. He was content to watch the same movie or TV show all the time and used lines from those shows to make up his speech. I had gotten to the point where I didn’t want to get out of bed in the morning. I felt like I just wanted to crawl into a hole. I couldn’t stand the looks from other mothers, couldn’t stand going to the park and seeing kids Jayson’s age that behaved like normal 3 year olds. I was beginning to avoid my friends and family. The final straw was our trip to Disneyworld. He tantrumed every day and made the trip fairly unbearable at times. We got home on a Saturday and I called his pediatrician on Monday. She ordered an immediate evaluation through the school district.

I was in unfamiliar territory. What kind of evaluation? What would they do there? What the heck was WRONG with my son? Was it him? Was it my parenting? What? What? But there was a part of me that felt relieved. Maybe someone was finally going to get him and me the help we so desperately needed. I remember sitting in the evaluation room that day watching the staff test and interact with my son. They asked me questions about eye contact and scripted speech. They touched him to see if he shrank back. Tried to get him to engage in conversation with them. As I watched them evaluate Jayson, it hit me like a lightening bolt – my God, they were checking him for autism!! I remember a cold chill coming over me and all of a sudden I felt like I couldn’t breathe. How had I missed it?

I left the evaluation and went home to the computer. Google became my friend and my curse. I read everything I could get my hands on and what I read was grim. Words like, “lifelong impairment”, and “poor ability to make friends”, and “intensive therapy needed” sprang out at me. One website said that “some autistic individuals may have hope for a fairly normal life”. SOME??? SOME??? FAIRLY NORMAL?? I felt my hopes and dreams crumble around me. Would Jayson ever be happy? Would he go to college? Get married? Go to regular school? Would we ever be able to have a normal conversation with him? Would he ever look us in the eye? Erik could barely register the information and the only thing I could see in his eyes was utter despair. It felt like our lives had ended.

Wow, pretty depressing, huh? Not the most uplifting of stories, you say? You’re right! When I look back to that time 1 ½ years ago I can’t believe how bleak things looked. The effect of autism on a family are devastating – high rates of depression and divorce among parents, financial ruin paying for therapies that insurance doesn’t cover, bitterness from siblings who feel neglected – the list goes on and on. It became very clear to me that I had 2 choices – go down the road of despair, or try to begin climbing a mountain of hope.

Now, before this story begins a happier turn, I want to make something very clear. We are luckier than some families touched by autism. Autism is a spectrum. The symptoms and issues vary from kid to kid and the severity of each symptom varies as well. ALL kids with autism are different and have different needs. Some needs are readily apparent to anyone who meets the child. Other issues may not be apparent at first and many may think the child is just misbehaving or being difficult. Any kid on the spectrum deserves our patience and understanding. Jayson’s condition is mild compared to some and he doesn’t suffer from many of the physical ailments that other kids might (seizures, severe bowel problems, among MANY others). Jayson is also verbal, unlike some kids that are locked in a world of silence that takes tremendous effort to break through. If anyone reading this has a child on the severe end of the spectrum – believe me, I don’t pretend to know what it is like to walk in your shoes.

But things slowly began to turn around for our family. I have the most supportive husband in the world that would do anything to help his son. Believe me, this helps. He has patience and understanding and is my partner 100% He doesn’t bury his head in the sand and pretend that there is nothing wrong with Jayson or let his anger and disappointment overcome him. He is a rock of a father and handles Jayson beautifully, whether it’s by wrestling with him for 20 minutes (which helps “rev up” Jay’s system to make him more clear headed and attentive), or being INCREDIBLY patient with Jay when he is having trouble transitioning, or by heaping praise on him when he does something great. He includes Jayson in everything “manly” – working on the lawn, fixing things with tools, carrying firewood, going to the hardware store. Jayson loves every minute of it and always says that he is Daddy’s “partner”. Jayson is doing fine in school and plays on a soccer team. He fights with his sister like any normal kid and most people who meet him don’t even realize anything is different about him. His therapies have worked well and, as a result, he has come so far in 2 years! He will go to kindergarten in the fall in a regular classroom (with some outside help) and I have high hopes that he will do great. He will turn 5 this year and will have his first friend birthday party – and he will actually have some friends to invite!! He plays with the neighborhood kids and nothing is more music to my ears than to listen to him playing and laughing with other kids!

And now that the shock of the diagnosis has cleared, I am beginning to see some of the lessons that God is teaching me through my son. These lessons are life changing and they are such a gift. I never thought I would think of Jay’s autism as a blessing, but I beginning to see it as just that. These lessons are the main things I wanted to share in this note.

1. God is in control. This always used to sound so trite to me when other people said it. “Oh, don’t worry that your house just burned down, or that you have a terminal illness, because God is in control!” But after some careful reflection I have found great comfort in the idea that God knows what He is doing. Jayson has autism, yes, but God has chosen ME to be his mother and has equipped me with everything I need to do a good job. He has allowed me to stay at home and be a full time mother, He has given me a supportive husband and a great marriage, He has surrounded me with amazing friends, He has put me in touch with a support group, He has put me in a neighborhood with another adorable spectrum boy the same age as Jayson (what a joy it was to meet him and his mother!), He has put me in a church that is a constant source of comfort and inspiration. I could list a million more things here. He is constantly putting people in my life that help me on this autism journey. I can do this because God is looking out for me. However, another lesson I have learned is…

2. I cannot be super mom all the time. God has equipped me with what I need to be a good mother to Jayson and Katy, but I am still going to screw up. A lot. There is intense pressure to make the right decisions all the time for our kids. Am I giving him the right therapy? Enough therapy? Too much therapy? Is he in the right school? Should I home school? Should he eat differently? Should he be in more activities? Less activities? Should I vaccinate him? Never vaccinate him again? Should I let him watch TV? Play the Wii? Am I reading to him enough? UGH!! Enough is enough, I say. I have learned to do my very best and not beat myself up when my best isn’t always getting the job done. My kids will survive in spite of my parenting mistakes. At the same time, I know God wants me to admit my mistakes and always ask for forgiveness. I want my kids to be able to do that as well. I used to thing being a mother was so easy – after all, Katy was such a good toddler and preschooler. Well, I like to call Jayson “Mommy’s little humbler”. Nothing like a big heaping help of Jayson to knock me off that pedestal! Thanks, God – I really needed it!

3. Slow down!!! What is it about suburban life that makes us feel we have to be busy all the time? Good grief! There is such pressure to have our kids in every activity, play every instrument, learn 4 languages, etc. We wear our busyness like a badge of honor – and try to top each other by always saying just how busy we are! The busier we are the better the life we must be providing for our kids, right? Look at how much we are enriching them!! Camps, lessons, sports, you name it. Is it the weekend? No time to relax! There are practices, games, lawns to be mowed, shopping to do, landscaping to perfect, and the list goes on and on. In our family, we couldn’t keep this pace even if we wanted to – Jayson wouldn’t be able to handle it. Kids with autism have a harder time transitioning from one thing to another. To fill his day with too much activity and no down time would overload his brain and cause him to melt. As a result, our family has slowed down – A LOT! Sure the kids are involved in activities, but we are careful not to overload them. Each child has one activity at a time. We limit our shopping and errand running to the necessities, - and we let the rest go for another time. We try to keep a calm cadence in our family. If we get too crazy, trust me, Jayson lets us know. I know this makes us different from the norm, but I am grateful for it. God has taught us a valuable lesson about slowing down and enjoying the peace.

4. It’s OK to be different and to NOT be the best. Ok, this has been a hard lesson for me in a few ways. I am a born over achiever. I worked hard to be the best at everything I do, from my high school grades to my college work, to my teaching job, etc. Of course my children would be the best at everything they do, right? Oh ick. I am so over that. I went to a Christian women’s conference one year and a speaker said something that really resonated with me – “Delight in your ORDINARY child”. Her point was that we didn’t have to make our kids into the best at everything – the best in their class, on their team, among their friends. We are heaping way too much pressure on our children! I have taken this one step further – I am OK with my kid not being the best, and also OK with my kid being a little different. Jayson is quirky to be sure – he quotes Max and Ruby episodes verbatim and fixates on certain things (like star wars). He speaks in “scripts” when he gets nervous and is very unsure of how to have a conversation with another person. He doesn’t make friends easily and will probably seem a bit weird to other kids. You know what? It’s OK. The things that make him different also make him a really neat little kid. He has an encyclopedic brain and a memory that puts his mother’s to shame. He can complete a 100 piece puzzle in 5 minutes and there is no Wii game he can’t master in a day. I feel the same way about my daughter. I don’t want my kids to be like every other kid. I want them to be their own person and to know that it’s OK to not be like everyone else. Jayson is going to struggle – and he needs to know that it’s OK to struggle. We ALL need to know that it is OK to struggle!

5. Let it go!! Oh boy – I used to worry about everything (still do to a point). House isn’t cleaned? That fence isn’t painted? Haven’t found the perfect lamp for my living room? Those things used to drive me nuts. Now I could give a hoot. Through Jayson, God has taught me to let the small stuff go. When I start to worry and stress about dumb things, I take a deep breath and try to instead think of something to be grateful for. When autism affects your family, other things lose their priority. Sometimes I think many of these things should never have had priority in the first place.

6. Finally, I have learned to hold on to my marriage for dear life. God’s greatest gift has been my marriage. It gives me and the kids the stability and happiness we so dearly need. Autism is hard and it is exhausting – without a partner to help you through it, it becomes 100 times harder. Kids have the tendency to shift your focus away from your marriage. God has shown me again and again what a huge mistake this is. My husband comes first.

As a result, my kids are more secure and happier. Now, do I have it all figured out? Ha – No! I’m sure life will throw a lot more at me and I will struggle with it. Katy, by the way, tends to get very upset when she makes a mistake at school or anywhere else. I always tell her that only God is perfect and then I tell her about the Amish, who purposefully put a mistake in everything they do to underscore the point that only God can achieve perfection. I am a firm believer in this. I always tell Katy to “Remember the Amish!” when she makes a mistake. It’s a funny little thing we do but it’s a good thing to always remember. She will make more mistakes and I will continue to do the same. Our family will have to constantly adjust as the kids get older. Jayson is doing SO great right now, but elementary school and adolescence are right around the corner and I’m sure that time will bring more struggles. I can only know for sure that God will keep teaching me and supporting me on this whole journey.

And in the end, I think we will find that this autism will be a blessing for our family – that’s right, a blessing. Our kids will grow up more accepting and compassionate (I already see Katy defending her brother to other kids), and we will have more grace and understanding for people. We will know more about Star Wars than any living human being (that’s a joke, kind of…) We will slow down our pace of life and always enjoy the little pleasures. We will never take anything for granted and we will celebrate every little victory. We will keep our priorities in check. We will continue to follow God. Jayson is going to make us all better people – I just know it.


  1. See the incredible .pdf booklet published by the University of Melbourne about Success in Tertiary Studies

  2. I think it is very awesome that you published this despite how it goes against your belief system Paul. You are an awesome person with a great insight and clarity! I'm very happy to know you. And this is a wonderful story, regardless of your beliefs! Thank you for sharing it!