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 19 years, I have to admit that I find it hard to believe where I’m looking from, what we have achieved. What Joey has achieved. With all my heart I ask other parents, friends and family who are struggling right now — please read this 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! And if we can get better – so can you!
To explain how far we’ve come, I must take you to where we started.
I was 34, on a very hot July day when Joey, my second child, was born all 9 pounds 8 ounces of him. Joe was a tough baby who turned into a tough toddler. The only thing that saved him from getting left 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 a beautiful baby.
Joey’s huge, soft, 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.
Joe 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 by the end of the night my arms would ache from holding him.
I couldn’t wait until he was a toddler thinking it would get easier, and then, when he was a toddler, I thought I would die! Now that he could walk it got worse. Joseph ran away from me constantly; we couldn’t keep him contained. We had two gates on every doorway – one on top of another and had no furniture in most of our house. 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.
Where was he going? It didn’t matter -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.
Sadly, I have to admit, 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 and safe, 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 and moving. Would you believe that this kid figured out how to take apart his crib when he was about two and half 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 the diagnosis when Joey was about 17 months old. It wasn’t easy. This was over 19 years ago, and autism wasn’t such a household word. It was hard to find a pediatric developmental 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 dollars 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 out loud before.
Joey’s doctor would not give a prognosis. When we asked, “So, what do we do now?” This was his reply: “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 strategy or therapy. And there is no cure. His words sounded like thunder; I realize now that was the sound of my heart breaking. I remember feeling faint. How can this be happening?
The Doctor. 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, not sleeping, 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. But we kept our heads up and kept swimming.
We went from doctor to doctor, therapist to therapist; it was exhausting and expensive. We learned that 40 hours of ABA therapy per week was the suggested protocol, not to mention at $80 bucks an hour. But 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, saw more hospitals, doctors’ offices, and therapy centers 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. At first you are almost afraid to say it out loud – could it be? An extra hour sleep at night. Less running, keeping his clothes on and at 8 years old he was potty-trained! Even his eye contact was better – yes, it was just a glance and he’d only send an almost-smile in your direction for a mere second but it was there. And that was all it took to keep your heart from totally falling apart. He was changing – things were getting better.
So, year after year, we kept throwing things at the wall –and it kept changing. Joey received services at school and at home. Therapies that included applied behavioral analysis, behavioral modification, speech therapy, PROMPT speech therapy, hippo-therapy, sensory learning therapy, art therapy, auditory therapy, occupational therapy, vision therapy, Greenspan therapy, applied verbal behavior therapy, IV Gama globulin, secretin and the list goes on.
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 and never giving up. But, most important—without question it was getting better.
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, clapping at baseball games, enjoying vacations. It’s like watching a miracle unfold right in front of your eyes.
Thankfully, I can say that we might have started from a tragic place, but now, 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 very THANKFUL for good!
Joey is amazing; he works so hard to be part of our world. Now, at 21 years old he has come so far. Joe aged out of his school district program only after being asked to the prom (by my beautiful, sweet niece) and attending his graduation. Yes, my boy with a little bit of hesitation walked down the graduation
Joe now made the transition to a day program. We were concerned about his new routine, but believed in his skills and used our faith to take our next jump together. Thankfully he took the change in stride and LOVES his new friends and routine. Joe now has traded in his pencils and ABA programs for Zumba and volunteering his time at meals on wheels. Bowling on Wednesdays and Movies on Fridays. I’ve never seen him smile like he does when we drop him off. The staff proudly reports how wonderful his skills are and what a fabulous young man he is. And I am thankful.
The change is amazing. Like a caterpillar slowly, VERY slowly -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, I get the chance to say that we are in the light! 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. Somehow with God’s grace we grew stronger.
We feel blessed for having the courage and 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.
I don’t feel as panicked about what comes next. I am starting to believe somehow we will be ok, he will be okay. We’ve just got to believe, especially when it seems the darkest. Keep working and moving forward—and most important, we must always take the time to stand back and admire the positive changes and NEVER EVER give up.
Phyllis Lombardi is a mom who has been blessed with 2 beautiful boys, one with autism. Happy wife of her childhood sweetheart, and a strong special needs advocate. Phyllis has spent the last 18 years helping others in the special needs community while working towards giving her son Joey the best opportunity to a happy, successful, and rewarding life. Being a special needs mom sometimes leaves you powerless — helping others is what has given Phyllis her power back. While working full time at Barger & Gaines an education law firm, Phyllis also works to help the community. Lombardi created the Ardsley Special Needs Committee, for the Ardsley School District. She is also a board member of the Hudson Valley Family Advisory Council, Board member of Foundation for Empowering Citizens with Autism, and is an administrator of one of the most active Special Needs Facebook pages, the “Special Mom’s Network”. Phyllis also works with the Westchester Institute For Human Development as a L.E.N.D. fellow family mentor for 15 years and helped create, and launch their building bridges program. Being a Mom is her favorite job where she enjoys cooking and making memories with her family