August, what does it mean to me? Well, I can’t really answer that without giving you some background…

It started one day over a decade ago. That’s when I realized something wasn’t right. I was so scared I actually felt my insides shake. I prayed for strength and somehow this weak, afraid, unsure person started to slowly find out what was going on with her son. He was only 17 months. But it was apparent to me he had trouble with the things you’re just not supposed to. He couldn’t look at me, he couldn’t play with toys correctly and he couldn’t call his own mama. By the time my Joey was 22 months old, he had a diagnosis: autism. The day I heard the diagnosis was the darkest day of my life. I thought losing my mom, at 14 was a pretty dark day … but nothing compares with the fear and concern you have when they say that your child has an issue. And they don’t know why. And they don’t know what to do. And they have no answers.

And it began, our road. The bumpy, expensive, emotional, uphill, lonely, no answer, doctor-filled, therapist road. I swear I thought I’d never make it. I often felt I couldn’t breathe, and even typing it now, I feel a numbness — it’s amazing how it never stops and never seems to really get that much better.

Autism: what would it mean for Joey, for our family? I set my sights on finding out. I wanted to get on this road and ride it and get somewhere, and make sure my son gets there with me. I promised myself that I would help him become the best kid with autism he can be. And I did. We did. My husband gave his dedication and unselfish love by working as hard as he can to give me the money to do whatever it took to make this road, smoother and less of a hill. And I researched and learned and connected and together we walked the road of autism with Joey.

As Joey turned two-and-a-half, I realized how much education played a role in his improvement. In his chance to say “Mama.” And he was going to say “Mama”! I know he wanted to and I was going to make it happen for him. Who doesn’t want to call their mom?? I used think, when you’re scared and lonely — or happy? I had to give him that.

I wanted to make sure education was a strong component of his life. I started my search, a yearlong search that took me to a small school district in Westchester County. It wasn’t an easy search; school districts don’t allow you to tour their school if you are not in district. So how do you find out if a school is the right fit? I went to PTA meetings: I found out when they were happening in different schools and talked to parents. Parents are your best resource; they are the most educated and not financially motivated resource you can find. When I was in the schools at the PTA meetings I used to write down the names I saw on doors and called and asked for those folks the next day. I sent pizza to some school secretaries that were helpful and used my gift of gab to help me make the best choice, to give Joey a chance.

We were living in New York’s Rockland County at the time. But then I found the school — across a river, in Westchester. That meant we had to sell our home and move. But I felt I didn’t have a choice. Thank God, my family supported me. The school was the right place for my boy. I loved that he could go to school with his brother, and that they could grow up together in the community. Joey would be in a self-contained class. He would receive all of his occupational therapy, and speech and applied behavioral analysis therapy but still get to roam the halls and have lunch and enjoy the experience of typical children. It was perfect.

So we disrupted our master plan in Rockland, and moved to Westchester to give Joey a chance — the best chance we could. I knew we couldn’t fix autism. I knew deep down inside, there might be a chance he might never say “Mama.” To find peace and be able to sleep at night … this mama had to at least know I gave him every chance. This way I didn’t have to live with “What if … ?”

So we moved. Unable to buy a house at the top of the market, we lived in a rental. It gave us what we needed: an address in the school district we wanted. But it was underground and small. We couldn’t modify it like we needed to for Joey. My beautiful boy didn’t have an alarm system or a fence. We slept, honestly, for seven years with one foot on the ground. Never knowing when he would run out in the middle of the night. Swim in the neighbor’s pool, cook in the kitchen or get into the bathroom. So we slept with one eye open and I prayed a lot. I aged a lot, too.

My mother used to tell me if you ever doubt yourself — and oh boy did I — if what you’re doing is hard, it’s probably right and if it’s easy, well … you get it. And this was so damned hard, it had to be right. So we stuck with it, and stuck, thank God, to each other.

It was a hard seven years. And what kept us going was Joey. He was improving. It was slow, so slow, but steady. And he started to understand and relate. He started to look at me and learned to say a few words. And yes mama was one of them. We knew we gave him every opportunity and even though we were not satisfied where we were living, we found the strength to muddle through because in our hearts we were at peace.

August? What does August have to do with this story of diagnoses and struggle? Well, chances: you give them and guess what? You sometimes get them back. Someone gave us a chance last August. We were able with this chance to buy a house in my sons’ school district. Our dream! Yes, our own home. We now own a beautiful home in Joey’s school district. And most important and exciting is that we have been able to modify it for Joey. Our beautiful house has a 6-foot fence that keeps Joey safe. We have an alarm system that advises us on what door or window is opened. We have special locks on the bathrooms and kitchen. To prevent stuffed up toilets and midnight cooking sprees.

But mostly what we have is a home where we can all live together, happily, satisfied, proud and at peace. So August will never be the same for us. It’s the month that gave us our peace. I now sleep with two feet in my bed, and so does my husband. My son Joey plays and enjoys his yard and home. And we are happy.

It’s an amazing road … this autism road. And we still hit roadblocks and hills along the way. But last August, the uphill road, became a little less steep, and we now have a home on it. And if you listen closely, every once in a while you hear the sweetest voice saying “Mama” inside.


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  • Gretchen August 4, 2011 at 11:30 am

    Phyllis, This is awesome–well written and I feel your love and tenacity! Thank God for August and all the other blessings He brings to you!

  • Diana Bradley August 4, 2011 at 9:09 am

    This article is so beautifully written and can tell it’s from someone that has a HUGE heart. Your family is so lucky to have you. There is so much love in your writing, for people who don’t know who you are you can tell how much love is in your family 🙂 I look forward to reading your next article everytime.