As Autism Awareness Month comes upon us, I reflect on how many of these I have been a part of.
How I had never even heard of “autism” years ago, and when I did, I had no idea just how much this word was going to become a part of me, my family, my life, and my son’s struggle.
As I look back on the past 15 years, I have to admit that I find it hard to believe where I’m looking from . . . what we have achieved.
With all my heart I ask other parents to please read this part carefully if you have a child with autism: Don’t give up, don’t despair, it can get better. No, it’s not perfect, but it gets better. WE are BETTER!
To explain how far we’ve come, I must share where we started.
I was 34 on the hot July day when Joey, my second child, was born (at 9 pounds 8, ounces). Joe was a tough baby who turned into a tough toddler. The only thing that saved him from getting put on someone else’s doorstep was that he was the most beautiful child you ever saw. Honest. I know, I know, all parents think their children are beautiful, but Joey WAS really beautiful.
His huge, dark brown eyes seemed even larger and deeper when his face was little. His cheeks were pudgy and round; he had a chubby, soft, perfect baby body and sweet pink lips. He also had the best laugh—it sounded like music.
Unfortunately, we didn’t get to hear him laugh often; this poor baby cried all the time. Only when I rocked him and held him did he stop, and then only for a few moments. Those days seemed to go on forever. I remember that by the end of the night my arms were actually aching from carrying him.
I couldn’t wait until he was a toddler, and then, when he was a toddler, I thought I would die.
It got worse. He ran away from me constantly; we couldn’t keep him contained. We had two gates on every doorway and had no furniture in our playroom. We couldn’t have anything in the room he was in. Why? Well, he would use it to climb on, to get out. Once he removed our stereo equipment from our hutch shelves and made a stairway out of it so he could climb out of a window.
It didn’t matter where he was going; he just had to keep moving.
It was insane! I cried myself to sleep so often, I don’t remember a night I wasn’t crying. All while trying to be strong, put on lipstick, and care for my hardworking husband and other child.
I have very little memory of my older son Nicholas’s third, fourth, and fifth year; they are a blur. We were so busy running after Joey and trying to keep him dressed that Nicholas just seemed to grow up while I was taking care of his brother.
My husband and I were scared, lonely, and tired, so tired. We never slept. Joey was always up. Would you believe that this kid figured out how to take apart his crib when he was about two years old? Yes, bar by bar he disassembled it while he was inside, all so he was able to climb out—anything to escape. He just had to keep moving.
We got a diagnosis when Joey was about 17 months old. It wasn’t easy. This was over 13 years ago, and autism wasn’t such a household word. It was hard to find a pediatric development specialist who would diagnosis him. We had to use a connection to finally get this big shot at Colombia to see Joey. That and over $2,000 for his two-session visit.
And then it happened: The doctor told us, “Your son has autism.” We knew it in our hearts, but nobody would say it before.
Joey’s doctor would not give a prognosis. I know now that it’s because he just didn’t know. When we asked, “So what do we do now?” this is what he told us: “TRY EVERYTHING—as long as it doesn’t hurt him.” Really, I swear, that was our guidance. I can still hear the doctor’s voice saying it. It sounded crazy. He further explained that there is no definite answer, strategy, or therapy. And there is no cure. That sounded like thunder; I realize now that it was my heart breaking. I remember feeling faint. How can this be happening? I thought to myself.
He calmly continued, “Every kid is different, so the best advice I can offer you, Mr. and Mrs. Lombardi, is to keep your head up, learn as much as you can, and hopefully if you throw enough against the wall, something will stick.”
That was it; that is what we started our war against autism armed with.
Yes, five, to six to seven years of his running, taking off his clothes, not being able to be potty trained, not wearing diapers, not holding down any food—the stress was constant and ruthless. From the early age of 2 Joey was able to open every child lock that existed. He used to take them off, stop to hand them to me, and then run away. If I hadn’t been so exhausted, I probably would have laughed.
We went from doctor to doctor, therapist to therapist; it was crazy. We learned that 40 hours of therapy per week was the suggested protocol. So we made it happen.
My husband worked hard to pay for it and I organized it, while caring for little Nicholas. My front door should have been a revolving door, we had so many people coming and going. Poor Nicholas, he saw more hospitals, doctors’ offices, and visiting therapists than I’d like to admit. I don’t know how we made it through. I was always tired, always cleaning, and always praying.
Just when I thought I couldn’t take it anymore, Joey started to change. Little changes. An extra hour’s sleep at night. Less running. He started keeping his clothes on, and at 7 years old he was potty trained!
And it was the little changes that kept us going. Even though the eye contact was quick and he’d send an almost-smile in your direction for only a second, that would keep your heart from totally falling apart.
And year after year, it changed more. Joey received services at school and at home. Therapies have included applied behavioral analysis, behavioral modification, speech therapy, PROMPT speech therapy, hippotherapy, sensory learning therapy, art therapy, auditory therapy, occupational therapy, vision therapy, Greenspan therapy, applied verbal behavior therapy . . . the list goes on. Yes, we keep throwing stuff at the wall.
As each year went by, it became easier. It wasn’t just the therapies or the therapist, the homeopathic supplements or the medication, the doctors and specialists or the prayers. It was all of it, and the continuing of it for years. But, most important—without question it was getting easier.
We started enjoying the things most people would take for granted—dinners out, movies and car rides together as a family. Our Joey started to deal with our world—he was keeping his clothes on, including his shoes, and using the bathroom appropriately, which meant not playing with the toilet-bowl water.
Thankfully, I can say that we might have started from a tragic place, but now, my friends, life is good.
Don’t get crazy—I didn’t say great. I said good. We still have our struggles. But good is good. We enjoy good. We appreciate good. We love good. We are THANKFUL for good!
Joey is amazing; he works so hard to be part of our world. Now, at 15 years old he has come so far. He warms his food in the microwave, dresses himself in the morning for school, and gets himself ready for bed. He takes a shower by himself with oversight, but 90 percent is done independently. He follows directions, understands, plays games, helps clean up, goes to bed himself, sleeps through the night, and has stopped running away.
Joey now looks at me—really looks at me! He speaks in sign language and uses his iPad. Joey is a happy boy today. He is comfortable in his own skin. And, even more miraculous, lately he has been talking more than ever; it’s approximations, and he’s hard to understand most of the time, but he’s using words, and he’s courageously trying all day long. To me, it sounds like music, just like his laugh, which I also get to hear more often now.
He loves his home, his room, and his iPad. He enjoys going out to visit family and behaves well when visiting. My husband and I get to sit at parties and family get-togethers, drink our coffee while it’s still hot, speak in full sentences, and enjoy ourselves.
The change is amazing. Like a caterpillar slowing turning into a butterfly, he is changing. Changing every day!
So, during this Autism Awareness Month, life doesn’t seem as dark as it has in other years. Now, in my mid-forties, I get the chance to say that we are in the light! And it brings me great joy to be here with my family intact and our bond stronger than ever. I know so many families that have shattered under the pressure of autism.
We are enjoying basking in the glow of the school district where we found a better education for Joey, where he has attended since he was 5 and which is undoubtedly a big part of his change.
We feel blessed for having the strength to aggressively fight autism; for not giving up; for being stubborn and for loving each other and him so much that we wouldn’t, we couldn’t, take no for an answer. We made changes in our life so he can have the chance to change his.
For the first time, I don’t feel panicked about what comes next. I am starting to believe that it will always get a little better . . . we’ve just got to believe and keep working and moving forward—and, most important, we must always take the time to stand back and look at the positive changes.