A 6:30 A.M. phone call remains in the panic window for me, particularly when the I.D. shows a close friend or family member as the caller. So begins my story of a friendship that never was.
"Andrea... Andrea..." My friend Dina was crying and could barely talk. "Please, don't hate me. Okay?"
What on earth? Dina and I had become very close, very fast, but I was a reluctant friend. I had been involved with a couple of friends over the years prior to meeting her, where the relationship became all too much like dating a controlling man, rather than being the other half of a healthy give and take ... friendship. I had met Dina through Lisa, a long time, truly beautiful friend of mine. Lisa had begged me for months to meet up with Dina who had recently moved back to her hometown. "You two will get along so well Andrea! She needs a friend right now. She lives two minutes away from you! It's meant to be!"
I didn't have the time. I didn't have the physical and emotional fortitude it takes to have a new friend. I did it though. Did it for Lisa. I liked Dina. Actually, I had given the girl my heart. Now hers was seemingly lying bare on the other end of the phone. How could I hate her?
"Dina, relax girl. Spit it out."
She composed herself. "Andrea, I've been really concerned about Sam. Scott is concerned as well. Especially since Sam joined T-ball with Paxton... Well, they're the same age Andrea, you know? When poor Sam just stood there not knowing what to do... you know? Then crying during their picture time..."
"Dina, "I laughed to lighten things up. "So far, so good. You're concerned about our son. Go on.”
" Well, I... I've been up all night, literally. I couldn't wait any longer to call. I was praying and praying and I feel as though you need to hear this... So okay... I was researching autism. I... I had heard some things and it sounds so much like Sammy. I couldn't believe what I was reading online! He has every marker. Literally, like every symptom Andrea. Do...do you hate me?"
I went on to assure her that it was the opposite. I was touched that she cared enough about Sam... about us, to do research. To further keep herself up all night to do it, was amazing to me! I told her that Sam's pediatrician had been talking about autism since shortly after Sam had turned a year old. His first year of life had some strong markers, but his pediatrician didn't say anything to us until Sam's 18 month check-up.
I told Dina about how Sam had been talking since he was six months old. Very, very early. By the time he was ten months old, he was saying short sentences and with perfect diction. At one year, he just stopped. Like someone flipped a switch on his birthday. When I mentioned this to the pediatrician, he didn't want to alarm me, but I could see it in his eyes. "Well, this is a big red flag for autism. Hey, it could be that he's into developing his walking and more physical things. If he's not talking by 2 yrs. let's get him some speech therapy and go from there. No need to panic."
Sam wasn't talking at his two year check-up. By the time we went through all of the insurance approvals and the state needing to get involved with developmental delays, he was a little close to two and a half years old when he began speech therapy. He began speaking almost immediately and we were thrilled. The speech therapist however, was very concerned for Sam. She told us in as many words as possible without stepping over what she was able to tell us without losing her job, that she was concerned about Sam being autistic. She suggested we get further treatment and assessments.
We didn't. We didn't do this firstly, because there were some (a good many) friends and family who felt that even the speech therapy was too aggressive. We couldn't possibly look into autism now. Sam was fine and we were being too dramatic. "Oh, those people need to justify their jobs." And "They diagnose every kid with something these days." So it went.
Continued treatment also meant that because Sam would've been turning three very soon, we'd have to cart him off to a public pre- school every day. No way was I sending my "baby" to a farm to be talked into a diagnosis. He was talking and he'd be fine. Besides, I had seen autistic kids. Sam certainly wanted no part of being held or touched as an infant, but through prayer, we had been unwittingly practicing "Squeeze Therapy" by "stealing" hugs from him, tickling him (Sensory Integration) and the like. Sam was now beyond affectionate with Adam and I. So cuddly. The opposite of aggressive. He was extremely well behaved... He TALKED, he played. Autistic kids don't talk and play! Therefore he was not autistic.
Still, at the time when Dina called me, things were going downhill rapidly. She and I met when Sam was in speech therapy, but I was much more guarded then about letting her in on anything personal I had going on. Back then, Sam was talking a bit "normal" but now absolutely nothing made sense. He was repeating lines from little movies he'd watched to go along with whatever mood he was in. At least when he first began speech therapy, some things made sense. "I carry you" meant "Will you carry me?" When he meant to say "Yes" he'd repeat what you asked him. "Do you want to go to the park Sam?" His "Yes" was "Go to park?" Lately however, absolutely nothing he said made sense, yet we could see that he was trying to tell us something.
His fear of machines was the most disturbing change. The summer prior to his turning three, he was walking with his dad "helping" him mow the lawn. Now he was trembling in utter terror when he so much as heard the lawnmower outside. All machines, big and small, terrified him. He acted as if inanimate objects such as trees were monsters. Yet all he wanted to do was dress up like a robot and he BEGGED to have nightmares. He didn't sleep. We'd wake up to his laughing hysterically in his crib. Just as terrifying for us, was when he was through with his laughing fit, he'd begin sobbing and saying "Nightmare." Dina didn't know the half of it.
Sam was our first child and so many people told us he was normal when we'd question. Maybe we truly didn't need the speech therapy and he would grow out of it? Maybe he'd grow out of all of it. Everyone said so. Everyone save for those closest to us. Wait. We'd wait and see.
I told Dina that I so very much appreciated her concern. I just didn't want to jump on the autism thing. Now that she knew that she wasn't the first person to suggest this, she and Scott could relax. I would talk to Sam's pediatrician at his next check-up. That would give him a good eight or so months to work this out. "Sound good? Thank you girl. I love you. Now get some sleep."
In the coming months I had no time to think about much of anything. Sam was so sick with repeated strep throat and work became too much. I "retired" because I was pregnant with our third boy. Busy as well with church and every weekend Adam and I hung out with Dina, Scott and the kids. Dina was pregnant with her third boy as well. We had so much in common. Dina and I usually talked every day of the week, however with all that was going on, I had not been able to talk as much.
Sam had his tonsils removed a few months before his yearly check-up. It was a nightmare. He was supposed to go home the same day, but they had to put him back under with anesthesia to find the source of his hemorrhaging and stop the bleeding. They decided to take him by ambulance to Children's Hospital and keep him overnight for observation. Once my husband was able to talk the nurses and doctors into believing that we could get Sam to take in fluids at home, they released him from the hospital. Recovery was average after that, but Sam looked skeletal from eating so little and he wasn't talking "right."
I didn't make it to Sam's 6 week post-op appointment until 8 weeks post-surgery. The surgeon was happy with how everything had healed and was ready to say the unnecessary pleasantries, when I asked him how long it would take for Sam to begin speaking normally again. "I'm sorry. What do you mean by 'normally'?" Feeling uneasy by the seriousness of his tone, I replied "Well, he's talking like a baby I guess. Since after the surgery, he talks.... well, like a baby."
There it was! That face! He could've said nothing else and I would've known. I knew by his face, at that very moment, Sam was autistic. I had seen this look on the faces of enough medical professionals to know what was coming next. I'd also seen enough with our wee Sam to know that he was struggling, trapped somewhere.
The surgeon told me that he didn't want to scare me, but that this was a "big red flag" for autism (I guess that a plain old red flag doesn't convey the importance of the marker). He said that he would write a prescription to have Sam's speech and language evaluated. I would also receive a questionnaire for A-typical behavior. They'd use that, along with his speech and language evaluation results, to see if he needed further evaluation for autism. The surgeon was so kind and thoughtful, "Whatever the case, he's getting close to school age and well, kids can be cruel."
I left the office with sweet Sam, holding his tiny hand as we crossed the parking lot. I felt as if we were entering a dark forest filled with awful, awful things. Oh my sweet, sweet boy, we're going to help you! Do you even understand me? Oh yes you do. You understand me. God, please let him know we love him and that he's going to be okay. Please Lord.
I had to call Adam, Mom and Dad.... and Dina. This will certainly make an end of any harsh feelings she's had toward me lately when we hadn’t seemed so close. This is the kind of thing that will make people drop everything and come together. Besides, she'll be relieved to know that we're getting Sam the help that she had suspected he needed several months ago.
Adam was his usual calming and steady self. My rock within my Rock. "Get home and we'll work it out. I love you." He needed time but he was first and foremost, there for me. What a position he was in!
Still in the parking lot of the surgeon's office, I told Dina how I felt sick about what was happening. But she didn’t react the way I thought she would. She asked what the surgeon meant. Was he saying that he thinks Sam's autistic? Is that exactly what he said? He's an E.N.T. surgeon, how would he know anything about autism? Sam hasn't even had the evaluation yet Andrea! Why was I jumping to conclusions? Sammy's fine. He's just a little slow. I began trying to defend the surgeon's credentials. I told her that the surgeon taught speech and language courses to teachers at a college. Everything I said was met with another question of credibility.
Who was this? She was talking like those speech and language naysayers that I had confided to her about. What was she doing? I was dying inside and she was... What? WHAT? Maybe I had caught her at a bad time?
I remember the details of the month that followed as if it happened seconds ago, yet it all seems so alien. The entire time plays in my memory as a fever dream. Sam's speech and language evaluation showed that he had a severe delay. He was in the first percentile for his age in expressive language and less than the first percentile in receptive language. When the same naysayers came along, with some new faces, balking even more at the idea of Sam being autistic, I called Dina for support.
Well? She questioned. What was wrong? They were just trying to be helpful and positive. How about Rita? Rita is a school teacher and she has babysat Sam. She doesn't see a thing wrong with him. She's trained in this stuff. I was really overreacting. They DO over diagnose these kids today. Peter acts just like Sam. I needed to relax. Sam was just slow.
Dina went as far as to ask me if I had perhaps exaggerated "even accidentally" filling out the A-typical behavior questionnaire.
It got worse. She almost did me in when Sam was officially diagnosed. "Moderate-Severe Autism." It didn't matter that I was prepared, it still came as a shock to hear the words and then to further, see it written in black and white. Dina’s response to the diagnosis was much less passive this time, “Sam is not autistic, Andrea.”
Our Sam is in mainstream middle school today, and recently celebrated his 13th birthday. He's proved every prognosis wrong and then some, but not without a tremendous amount of work, patience and perseverance. He's still as sweet as can be. Besides having a dry wit that gives the best of Brits a run for their money, he's extraordinarily handsome and as his grandfather predicted, smart as bleep! How dare the naysayers take from Sam and his siblings, this time of heartbreak, incredible perseverance and accomplishment, and call it a lie?
How dare they sit in their armchairs of ease, saying how it was all a sham? How do I "prove" the pain? Dina certainly saw the proof, she researched, found it and gave it to me. Still, she managed denial. Her comments and the denial of what we were going through as being valid and incredibly gut wrenching for us, ended our friendship. It was all too common from many others. It is one thing to not have the courage and fortitude to stand by a friend through an awful, horrific time in their life. It is quite another to minimize the pain because you can't handle it, or whatever reasons people have for minimizing another's pain. It hurts. It makes the pain worse.
I still have to pray about the bitterness and I often feel that it's completely gone. Still, all that it takes is for Sam to come home from school, stoically holding back tears and telling me that he's fine. After some prying I'll hear that he's sick of thinking differently and not understanding things that come as given for everyone else. I'll get the latest results to his evaluations and despite his awesome grades, the typical "severely impaired" boxes are checked. All a lie, right? It gets me going, you know? It's a lot like having acid reflux. I need my "antacids" (lots of prayer and meditating on what's pure and lovely) or that acid rises up and I find myself choking it down whilst my throat burns and the bitter taste remains in my mouth. We do have a lot of support now. Even some of the old deniers stuck around and eventually began talking as if they had always been there for us. Whatever, they're here now and I appreciate them.
Who is in your life at this very moment, suffering from the pain of autism, chronic illness, malignant and aggressive illness? Do you sing when they suffer, or do you weep with them? Do you try and help by making the required sacrifice? The uncomfortable sacrifice? Do you choose instead to make up your own story, minimizing their pain and anguish so that you feel comfortable?
To all of those who have been there, thanking you will never be enough, but it's all I have. Thank you, with all that's in me. Please, to the rest, minimizing a loved one's pain, questioning the validity of it, is akin watching someone get hit by a car and your singing whilst telling him to stop his moaning... asking him if he's certain that it was a car that hit him.
The time and way to be positive is after you've held his hand. Bring him some goodies, tell him you're sorry about his having to miss work and the pain and trauma of being hit and hurt. It's going to be okay and you're going to be there for him. As long as it takes, whatever it requires, you'll be there, in word and deed.