That First Year

About 2 ½ years ago, a well-meaning friend turned to me in the middle of a Bible study and asked if I ever thought of checking my son out for autism. Little did I know that question would send me spiraling into a whole new world.

I had never been asked about Alex in this way before and I froze up in defense. We suspected he was developing at a slower pace language wise and was a bit quirky, but hey...so was Einstein. The question stunned me. I felt as if I was caught in the act of being unaware of my son’s problems. Over the next few days I would well up with tears at the most inconvenient moments.

I searched the web, going over the autism checklists to see if Alex matched up to the criteria. Every time I wasn’t sure how to answer, I thought, “See, he doesn’t do that! Maybe he’s not.”

I spent the next few days asking people in very indirect ways if they thought he could possibly have autism. I was hoping they would say, “No, are you kidding, he’s fine.” But they didn’t. A good friend got silent, nodded her head in agreement and, with pained eyes, admitted, “I just hate to say it…I know how much you love him.”

How could it have not been clear? I wondered just how many other people thought there was something wrong with him. “Who else knows?” I thought with thick paranoia. We were so fearful of him being labeled that we thought keeping it a secret would be helpful for his future. The only problem was, it appeared everyone was in on the secret except us. It may seem absolutely insane to think not telling anyone would be helpful, but please understand, I wasn’t dealing with a full deck. A year and a half prior, both my parents died three months apart from each other and in between, my precious daughter Shannon was born.

In retrospect, being in denial and trying to cover up the obvious can be pretty embarrassing.

I remember one of the first times I saw it for myself. I had given Alex a time out and when he had finished his sentence, I asked him if he knew why he was in trouble. His big blue eyes were blank and transparent. He mumbled something that didn’t make an ounce of sense and his eyes gazed off in different directions. He knew it was his turn in the conversation, but hadn’t a clue what to say. He wasn’t present and connected – he just didn’t get it. It became obvious just how much my mind had been filling in the blanks where his communication and social abilities lacked.

Did I create a sort of imaginary relationship with my child to buffer the pain of the truth? Was the connection I thought I had not really there? Perhaps this is why people could see something was wrong with Alex before I could: they didn’t have anything to lose with the truth (except maybe a stunned friend, temporarily).

As the truth sunk in, it didn’t take long for my husband and I to see that we needed to act quickly to figure out what exactly autism was and what we needed to do about it. I felt as though I were in quick sand. My grieving process was moving at a slower pace than his need for help. It’s like I was on the wrong side of the people mover.

As I juggled through the myriad of websites and books I set out to fix him, even before I was completely convinced he had autism. There’s a tremendous amount of pressure to get your child intervention early and I felt that time was running out. I had to steel myself and get to work, viewing this whole thing as a project to get him where he needed to be.

A friend, trying to respect my secretiveness, handed me a slip of paper with the phone number of the Valley Mountain Regional Center on it. I contacted Soledad Gutierrez-Cabral, Intake Coordinator at the VMRC (209-955-3330). She answered all my tear-couched questions with kindness. We set up an intake meeting and Alex was put on a wait list to be officially diagnosed. By Soledad’s recommendation, I contacted the LUSD School Psychologist Mary Caruso (209-331-7298) to receive initial evaluations and to see what options were there for him through the school district.

Mary treaded lightly and was very sensitive to our situation. She came to our home and spent some time observing and testing Alex. I remember watching Alex sit next to her and pull out an entire mound of tissues from a Kleenex box, one by one, and throw them everywhere. We would usually allow this to keep the peace, but boy did it seem weird and inappropriate all of a sudden. I was getting increasingly frustrated with him and completely overwhelmed with what was becoming more and more clear. I remember getting choked up, wanting to break down and cry, scream and possibly throw something.

I guess, in my selfishness, I was thinking everything was a reflection on me and who I was as a mother and a person. I so needed people to show me that we are both loved, in spite of this disorder. I remember Mary letting Alex keep a cute little black and white kitty puppet she used during evaluations after seeing how much he adored it. It’s those little acts of kindness that get you through.

At the end of the home evaluation, Mary suggested we meet again. She said she wasn’t completely convinced he had autism, but after the next set of evaluations she’d be sure. I was still secretly hanging on to the hope that perhaps everyone was wrong.

After the next meeting my hope ran out and it was clear that my little boy had autism (or should I say “autistic like behaviors” because the school district can’t officially diagnose). I resigned to the fact...what else could I do?

We had an IEP meeting (which I’d never heard of before) and he was placed in a preschool class using the TEACCH program at Nichols Elementary School. He did well and was then placed in a special day class with speech and language emphasis at Lawrence Elementary School. Under the tender direction of Mrs. Diane Baker and her ever firm, ever loving cohort Cher Bear, Alex improved greatly.

I would grovel in thanks to everyone who would care and help him, being so relieved that we weren’t alone.

A breakthrough for us was when we joined a few clinical research studies at the UC Davis M.I.N.D. Institute. I filled out an online form from their website showing my interest in their CHARGE and Phenome studies. To my surprise, I was phoned the very next day. Our understanding of Alex and autism was certainly illuminated at the MIND. What a blessing to go where he was fully welcomed and wanted, where we could pick the brains of the experts and where there is solid, up to date knowledge of the disorder and hope for breakthroughs in treatment options.

He received another unofficial diagnosis from the MIND and then finally he got his official diagnosis through the VMRC’s designated psychologist.

Over time, it became obvious that he needed additional one on one behavior intervention. We were blessed with discovering Dr. Nancy Hoff who performs play therapy based on RDI principles. (I will write about what an incredible help Dr. Hoff has been to all of us in a future blog).

It took about a year to complete all the evaluations and feel like we had a solid program set up for him. If I had to answer one more multiple-choice question about his behavior I was going to implode.

We continue trying new things to increase his ability and will to connect to others. Over this past year, we’ve tried a social skills/parenting combo class at UOP, enrolled him in a play group at Speech Therapy Associates and have tried a few other activities such as swim lessons, basketball and movement class. We've had the wonderful help of Steve Taylor, our Behavior Specialist who, among other things, had Alex and his little sister potty trained in two days! We are interested in trying out a Therapeutic Riding Program and perhaps an art class in the future. Then there’s the whole biomed thing…

All along the way, we’ve been on a learning curve, trying to mimic all the various techniques of the professionals at home while continuing to learn how Alex sees the world.

There have been so many wonderful people who have and continue to come along side us and have helped Alex in so many ways. What a blessing to watch grace in action.

I did thank my friend who asked me that monumental question. Turns out, it was the nudge we needed.

The journey continues…