Life Times Two with Autism
Our Journey to Getting Answers that Lead to an Autism Diagnosis
My younger self had always wanted to be a mother. I loved babies; it just seemed fitting. I had all these expectations on which gender I preferred and how many I wanted, and things would just be perfect. I would tell people constantly, “I want four kids, all boys.” By the time my first came and staying with my uncle and his four boys for a short time, the disappointment of it being a girl wore off fast! Growing up with a lot of siblings, I knew I wanted my daughter to experience the sibling love, so shortly after we fell pregnant again. After a false miscarriage, the shock of our lives hit us; we were having twin boys. Pregnancy and the birth of our twins went without a hitch and they had developed no different from any other infant. When it came to the point where babies start to speak, there was a short-lived mental panic I had; other twin moms I knew were expressing how their twins were starting to talk and, well, mine hadn’t quite reached there yet. But as quick as the panic came was as quick as it had left because they started saying the words every mother wants to hear first, “ma.” Something wasn’t right, though; call it mother’s intuition but I started to be concerned. Yes, they were saying “ma,” but they weren’t saying it directly to me. They would only say it if my sister came around, and even then, it wasn’t frequent. My sister and I would joke that they think she’s their real mama and trust me, they still treat her like a Queen and me nothing more than a mere peasant. Past the laughter there was a concern brewing. Is there something wrong with the boys?
As the boys grew older their talking began to lessen. There weren't many words to begin with, but they would be said less frequently, and no new words were added to their repertoire. As I would hear stories told by my fellow twin moms of how their twins were saying xyz, I knew that something was amiss. So, when they’d have doctors’ appointments there would be a development package. The questions were so black and white it was nearly impossible knowing how to answer them. When it came down to the question of if the baby was talking, a simple yes or no question with no line to write a concern, I explained to the doctor my trouble with answering the question. Yes, they can talk but were they “talking”? I’d say no because it wasn’t consistent. His response had left me feeling dumb, and like a weak advocate for my kids. I am not a confrontational person and I tend to go along with things because I don’t want to rock the boat. So, I left the appointment defeated and convincing myself that maybe nothing is wrong.
By the time their one year check up was coming up I was determined to go in there like the fierce mama bear I could be in my mind. Ready to defend my little cubs, and not leave that office until my voice was heard, dammit! Well to say the least that is not how it went. You see I brought up my concern once again as politely as I could, not mama bear like at all. His response this time was I simply had the TV babysitting them. That was like a punch to my gut. Now don’t get me wrong I’d have them watching movies to keep them entertained. At the time I was by myself with three kids, three and under, and to get things done like make dinner, tend to my oldest, and clean, I needed to keep them contained and entertained but I was still engaging with them. I was so confused because when my daughter was an infant she watched TV all the time too, and so did my nieces and nephew, and all developed when they should, some even before they should. Here I am trying to stay afloat and take care of these kids but obviously failing at it, and this doctor confirmed it. I am a shitty mom, I thought but part of me told me there’s something else and he’s just not listening. He told me if they weren’t speaking by 2-years-old then we would start intervention. At 18 months they still weren’t speaking, so this mama went on the search to find a doctor who would listen, and I did.
By this point the twins had stopped saying “ma” and were rarely even saying it to my sister. Communicating with them was strictly a guessing game as to why they were screaming at the top of their lungs. They would eat anything and everything besides actual food, from bugs, dirt, crayons and beyond. They were so active, it drained the life out of you trying to keep up with their antics. This was my first time having boys so I wasn’t sure if any of this was normal—ya know, boys being boys—or something more. Most days I had somewhat of a routine down so that I anticipated their needs. Still, I had to guess what they were screaming about. Often they’d wake me up in the morning by screaming. They would scream when their movie was done, scream for juice, scream because they didn’t want whatever food I had given them that day even though the day before they enjoyed it. At night I’d put on a movie for them to help them sleep, 1 AM and five movies later they’d fall asleep then BOOM! They’d wake up at 3-4 AM screaming and stomping because the movie ended. I’d have to pop right out of my sleep and rush to try and calm them down. Find the solution quick before the downstairs neighbors bang on the ceiling. Tiredly I'd put on another movie and try to go back to get some sleep, but twin A would start back up screaming and crying. I’d try and go into ninja mode to sneak out, but the second he would see me inching away… turn on the waterworks. I was losing it, mentally and physically, and I just needed answers! Well, start up the band because my savior was about to gallop in.
The time had come to finally meet their new doctor, and I went in once again with the mindset that mama bear was not playing around this time, although let’s be frank, I’m a pushover. His developmental questionnaire was a single paper, but it wasn’t strict yes or no questions. It provided space for you to list your concerns, and when he entered the room he discussed those concerns. Sweet, sweet relief! Could this be the answer to my prayers, my angel from heaven? He asked me how many words they have, and I informed him it was three, and inconsistently used. At this point they should’ve been saying at least 25. I was sent to an audiologist to rule out any hearing problems, and a referral for an early intervention program. Alas, I was getting help. I was on my way to obtaining answers and not once did he blame me. Once at the audiologist with the boys in tow, I no longer felt like the world was on my shoulders. I was one step closer to getting answers, one step closer to helping my boys.
You didn’t think it ended right there, did you? Oh no, the hearing test was a whole other obstacle we needed to master. The boys wouldn’t sit still and keep the little ear testing do-hickeys in, it took strength trying to restrain them, and getting them to stop crying was almost impossible. We left completely defeated and drained, but we weren’t giving up we just needed a better approach. With our referral to the children’s hospital, I was admittedly anticipating the worst. In the beginning there was some crying once we got into the hearing box, me holding on to one child at a time just wondering and hoping this worked. If this didn’t work the next option would’ve been sedation—that was a point I wasn’t wanting to reach. A quick scene from a cartoon would pop on the screen accompanied with sound varying in volume, and the boys would look. Sometimes they would babble in their language and not look at the screen that flashed, so I thought for sure either they failed to some degree or this method wasn’t working, and we’d have to try sedation. Once we got out of the booth I was reassured that they had passed, and I was relieved, no sedation for them. But, if their hearing was good, then why on earth aren’t my boys speaking?
I can’t really recall where the idea that my boys possibly might be autistic that lead me into a deep search of it, but there I was joining Facebook mom groups, googling, and asking questions. Through all of this it had confirmed my suspicion that it was a possibility, but I had no diagnosis, no professional to tell me yes or no. Once again, I was stuck in limbo, stuck with no answers. The early intervention program process was starting, and they referred me to a psychologist to get an official evaluation. They had seen some red flags that pointed to autism but they themselves could not diagnose. Meeting with the psychologist, I was filled with optimism (which is rare as I am a pessimist by nature). We spoke, filled out packets of questions, times two. It took a great tag teaming effort to get it all accomplished before the appointment ended, though I had to fill out a great portion because their father was in denial at the time. She would need a month to go over with her team everything, from how the boys did individually with interactions to what we filled out in the questionnaires. One month and I will have definitive answer on whether there was something wrong with my boys. One month and I will get help for them to succeed.
A month later and the day had finally come. We had to travel back to the psychologist to review everything, and my mama intuition was right. She had diagnosed both boys as being autistic, in what she determined as high functioning. Twin B had a score of a 1-2 which in layman’s terms meant he was “less severe” than his counterpart who had scored at a 3. So, there it was, the answer that I was seeking, and I could now move forward with tools I had to help them, and it would be easy breezy lemon squeezy. Or so I thought. I was naïve in thinking high functioning meant less challenges. That they only need a little bit of help and then they would be “normal.” We are a year post- diagnosis and I am here to tell you things are not less challenging, and things certainly aren’t the dryer setting “normal,” but that is a story for another day, my friends.