"I don't know how you do it". Just one of the questions we frequently get when we talk about raising our oldest son, Cameron. He was diagnosed a few weeks after he turned 2 with an Autism spectrum disorder. It wasn't easy to even get to the diagnosis, as we were both in huge amounts of denial, yet our son needed help. My husband and I researched and learned a lot of things in a short amount of time following diagnosis. He performed WELL below the "normal" range in a lot of important categories. He even performed in the less than 1 percentile in some areas. As lifetime overachieving parents,
we dealt with plenty of tests in our lives. Testing in school, testing to get into college, testing for certifications. We had pretty much always done well, passed, and been in the top tier of things. Personally, I never wondered what being in that bottom tier felt like. I mean, SOMEONE somewhere had to be the lowest performing. Now, we are learning as parents what it takes to be at the bottom. In the "least of these" category, if you will.
When we tried to wrap our heads around the diagnosis, one thing we did was try to find our "new" normal. What can we expect from this child? What plans do we need to make long term? What are his chances at "recovery"?. The questions snowball you directly into depression. Just like that. You start thinking, " How long can I do this?". "What happens after I die?" Then, "Was there something I did to cause all of this?" It can get really scary in a short amount of time. The internet is a blessing and a curse.
So, what did we find? Based on his level of severity, we should not fool ourselves into thinking he will ever communicate effectively. We should also plan on diapering him well into adulthood. He won't be able to function well in a typical classroom and will need daily supportive services, none if which will be covered under any medical insurance or plan. Your kid will pick the worst junk food you can think of and will eat ONLY that item or select few items FOR THE REST OF TIME. He will be isolated. Some of that isolation will be self induced, but society as a whole will ignore, or gawk, or refuse to include him. It will be next to impossible for a marriage to stay together. You will isolate yourself from society. Prepare to lose most if not all of your friends, as well as familial support. Your other children will loathe him. They will feel robbed of childhood and cheated, only to be left to care
for the unwanted sibling after you die. Don't expect him to ever maintain a job or live independently. He will drain you of your life savings, retirement, and put you in a state of poverty. Want to know what this is? BS. Yes, bull s%#t. Who knows what the future holds? If you let your OWN self limit the potential, then yes, this could be your reality. What we found online looking for answers was the devil's attempt at weakening the miracle in front of our faces. This is the devil trying to tell you that what God has made for you is less than perfect. (Yes, I referenced God and used a cuss word in the same paragraph. Get over it.)
Eventually, we both made it to a place where we had to stop trying to predict the future and just live in the moment. Live in the here and now. LIVE. It is still a struggle every day to get up and push the negativity away. Especially when very little comes easily. The effort, pain and struggle that lies ahead can seem daunting.It is like running a marathon for the first time with no training. If you look at a map of the start and finish, it might overwhelm you. Instead, you focus on attainable goals, or landmarks. You make THOSE your own personal goals. Like the new Marathon runner, we make an attainable goal. We push for that goal. EVERY. DAY. We work on improvement of ourselves as human beings.
The list of things that my husband and I found online about what to expect has become a sort of checklist of things to accomplish instead. We aren't trying to cure anything. We are, however, doing our very best at raising our children to live happy and fulfilling lives. We will continue to push for the finish line of this marathon we are running. We will relish and appreciate every milestone, landmark, and achievement along the way. I am pleased to announce our current progress. Cameron speaks! People understand what he has to say. He speaks in full sentences! His functional language is improving every day. He follows directions, (well, he sometimes refuses like any other typical kid, too.) He imitates and plays with superhero toys, PRETENDING! Cameron knows the difference between happy and sad. He expresses emotions, and has learned some nonverbal communication. He goes to class and is included for some of the day with other kindergarteners.
Cameron had his first night in big boy underwear, and he stayed dry. So much for needing diapers all of his life. He is going to have his first play date this week with a neurotypical neighborhood child. We have made a consious effort to include him in every thing a kid his age would normally do in public. This includes going to the grocery store, baseball practice, football games, school clothes shopping and birthday parties. Sometimes, we have to adapt, but my husband and I refuse to become reclusive. Speaking about my husband and I, we have found that through our challenges, it has made us so much stronger as individuals, but also as a couple. We grew together instead of apart. We do a lot of leaning on God, praying, and leaps of faith. On occasion, we are able to sneak in a new food and have him eat it. Another big thing.... Our boys are literally each other's best friend. Our youngest still does a lot of what other neurotypical kids his age do, although it does take more effort for that to happen. Our youngest wants to do everything with his brother and understands that he is different. He constantly pushes Cameron to try new things, explore the world, and meet new people.
Let that be a lesson to all parents facing a diagnosis of autism for their child. Do not let a doctor, the Internet, a family member, or yourself put limits on what your child can or cannot do. You will create your own goals. Each child will be different, so you should not compare them to any other. Persevere and fight EVERY DAY. Be hopeful and optimistic about the future. If today was particularly rough, be hopeful that tomorrow will be better. In those moments of desperation and struggle, just know that you are not alone. There are networks, and groups across the nation, and even globally that you have access to at your fingertips. You will find a brother/sisterhood amongst other parents raising kids on the spectrum. There will probably be some philosophical division amongst each other, but don't let that divide you. No matter a person's approach at doing something, the intent is the same.... To benefit their child.
To answer the question, "I don't know how you do it", How WE do it is by setting a new goal every day. Persevering, taking leaps of faith, challenging our own perceptions as well as other people's perceptions of what autism looks like. We wake up every single day by the grace of God. We push ourselves farther than we ever thought we could. WE stay united as a family. It isn't a single person's achievements, but a husband, a wife, and two children that refuse to leave someone behind. We have a support group of other families all over the world, and a movement that has started to shape the world in the form of awareness and acceptance. We are changing that list of "cannot or will not" into "watch me and just try".
“The man who moves a mountain begins by carrying away small stones.”