ARTICLE AND PHOTOS BY LACY BROWNE
We’ve been fighting for our sons from the day we became parents, but no one knew that we would be fighting a daily fight that will never be won.
My husband, Clint, and I were young and excited to start our family; we even did genetic testing to ensure that we would have a healthy baby. Little did we know that, just a few years later, we would get news that would change our lives forever.
We were so elated when our first son, Tyler, was born. He scored great on the Apgar scale and started hitting milestones right on schedule.
But when Tyler was around 18-months-old, we really started worrying that something was “off.” By the time he was 2-years-old, we were on a quest to find out what we could do to help our beautiful son. We were told that he wasn’t autistic because he was too affectionate and had good eye contact. We had his hearing tested, did a brain stem response test and saw doctors all over the northwest. While we were on this journey, one specialist at a children’s hospital told us there was a 50-50 chance that Tyler would ever talk – that was a particularly low moment.
It was heartbreaking to hear such negativity and we simply told the doctor, “Our son has things he wants to say and we will help him find a way to express them.”
When Tyler was almost 3, he was finally diagnosed: autism, apraxia of speech, paradoxical collapsation of the larynx, among other issues. I was seven months pregnant with our second son, Riley, (who is also on the spectrum) when we got the news.
We went through many specialists at Seattle Children’s Hospital, getting great direction and advice on what to do next. Staying realistic but optimistic, we pushed forward. The diagnosis was heartbreaking, but by this time it was so good to finally have answers and a plan of action.
Life was a struggle, but we kept pushing through with behavioral, occupational and speech therapy. We lived therapy – and still do. Since we knew our second child was going to be a boy and we already had one child on the spectrum, our odds of having another were that much greater. We knew what we needed to do: Start therapy from birth to give Riley the strongest chance to succeed, regardless of needs. This also kept life consistent for Tyler, so he wouldn’t feel so different.
Since starting therapy, not a day has gone by that we don’t use those tactics. It’s just always changing; you have to evolve and be ready to embrace change so that you can help your kids be the most successful and happiest they can be. Driving Tyler to the ER in the middle of the night because he couldn’t breathe has shown us that if we stay calm and positive, he can too.
Are there times when we get depressed and feel bad for the boys, and ourselves? Yes. But more often than not, we just think about how we can make their lives as enjoyable as possible. Now that they are older (Tyler is 9 and Riley is 6), we are faced with issues like sports they can’t play and birthday parties they’re not invited to. It’s one of the hardest things to deal with as a parent and it just keeps getting harder. Day-to-day activities like brushing teeth, getting dressed and a “simple” trip to the grocery store can all feel impossible, but we continue to try to make them a learning experience...hoping that someday they can do these things on their own.
On a positive note, we cherish the smallest of moments that others may take for granted. For example, when Tyler was 4, he said “mommy” for the first time and I burst into tears of joy; knowing that our perseverance and belief in our son overcame what some doctors said would never happen. His ability to communicate and interact with others has blossomed and every day he impresses us with his determination and patience. He said “I love you,” for the first time (unprompted) when he was 8. There are still many days when I just melt when he says those words. They mean so much – knowing that he feels what unconditional love is really all about and has the ability to express that with words along with showing us...it’s just amazing.
It took more than a year to get Tyler’s diagnosis (Riley was diagnosed at 18-months) and every day is a struggle, old or new. But they choose to trust us to be the best parents we can be and we can’t let them down. There are days we feel as though we’ve failed...with a special needs kiddo or not, I’m sure we all feel that. It’s how we recover from those times that help our kids see the type of people we are. We may be two for two with autism, but it’s amazing how much each of them has grown. Our sons have their own set of skills, their own priorities and their own passions. It’s how we embrace those that make us the best parents we can be for them.
Tyler is a genuinely affectionate, loving, happy, forgiving, playful boy with a passion for music, specific toys and pretending. He loves his iPad, swimming, family, Disneyland and a couple of really close friends. Tyler is positive, determined, resilient and hardworking and will light up the room with his smile. Riley possesses many of these great attributes as well, but is also very energetic, detail oriented, an inventor and demands to know how and why things work the way they do. No one child is the same; special needs or not.
Bad days feel impossible, but the good days are what you live for. Just remember that, as a parent, you may need to speak for your children when they can’t; you’re their best advocate and they need your love and support to have the best quality of life. We are lucky to have a wonderful support system within the community, such?as school staff, therapists, doctors, friends and family, and we are so thankful.
Our wish is for less judgment and more compassion in our day-to-day lives. Of course we really wish that autism didn’t ever exist, as we wish many terrible things didn’t exist...but maybe love and compassion are the next best thing.
Lacy Browne and her husband Clint live in Bozeman with their two boys, Tyler and Riley.