Every day from the time my son was at day care until he was about three and ½ years old, I would pick him up from school and perform the routine. “Did you have a good day?” (Expected silence from the back seat….) I’d wait a moment. “What did you do today?” (More silence). “I bet you guys had fun today, Mrs. So and So said you guys got to use the computer today….” (Silence). Every now and then he’d sing an inaudible song or there would be a familiar tune he’d hum.
I remember childrearing books talking about how you should talk to your infant – talk to them about how you are dressing them. Talk to them about what the colors of things are. Just talk to them. I did this with Grant until he was about 3 or 4 years old and still do now (at 6 years old), because he still doesn’t respond sometimes. During his periods of regression, it is very common to have a long day of: “Grant- GRANT! Answer me” (and physically turning his blank face toward us). But I still talk to him anyway.
If I sang to Grant when he was an infant, he cried. I actually made the comment in his first 3 months of life that I felt like he was autistic. It seemed the sound hurt his ears (and not just because my singing just sucked). Since he was born he was hard. I didn’t know what to do as his mother. He wasn’t a happy baby at all. From the moment he was born until he was 3 months old he cried. It was beyond colic. We ended up in the ER twice because there was something wrong with my baby. I knew there was. I still don’t know what he needed and that upsets me more than words could ever express. He spit up so badly the night he was born in the nursery, the physician switched his formula to soy. We switched it roughly 4-5 times thereafter. Along with multiple bottle switches, adding Kayro syrup to ease his constipation (along with enemas), and he also took Zantac as an infant. He only slept for 2-3 hours during the day solid- then at night- not at all- we were up every hour. We had days in which he slept only 4-5 hours total. That was it. I knew the lack of sleep was not only killing us- but had to be physically bad for him, too. We eventually hired someone to stay up at night with him by the time he was two. Aside from the colic, reflux, and sleep disorder, he was slow to crawl, walk, and the speech was slow to evolve… he did have one word commands and two – three word sentences, but then the progression just stopped.
When he was two ½ years old, we noticed he would NOT get into a bouncy house at a birthday party with anyone in it, but he did want to try it out when the other kids were eating cake and opening presents. While the other kids were bouncing, he stared intently at the motor on the ground for 10 minutes or more. Apart from his unbelievable hyperactivity, we noticed some other things. He had begun flapping his hands and fixating on anything that spun. He lined his toys up and just liked to watch his cars roll back and forth. He liked to stare at the car’s tires as he rolled them on a table at his eye level. He’d do it quietly and methodically—over and over.
When his pediatrician referred him to a specialist, my husband and I knew there had been a problem all along. I was relieved to finally have a “reason.” What I didn’t expect was the specialist to just smile and nod as I naively rattled off so many hallmark symptoms. She, in turn, let me know he had severe comprehension and speech delay and was Autistic. Get intervention. Come back in six months. It was a quick and easy call for her. We didn’t even have to spin the football we brought like dumb asses to make him flap his hands for her—this mysterious thing our child was doing. It’s called stimming. I know that now. As we left I felt a huge wave of relief in some ways, and my husband wept as we finally walked out of the Medical College ahead of my parents and Grant into the cold January air. It took a full year for the full impact of what was happening to hit me, and for me to be able to weep. I am still now struggling with this evolving diagnosis.
The hardest thing about having an autistic child is that it has completely isolated us. His behavior was extremely challenging and there were a lot of temper tantrums because of his severe speech and language delay. We may as well have been speaking French for the first few years of his life. That was the way it was explained to me. Grant didn’t understand language had a function; when we asked a question, he didn’t realize we expected him to give us an answer in return! Grant never responded to questions save a handful regarding his basic needs. He didn’t understood or take direction if you gave him a task, nor did he respond to his name at times. We did, of course, have his hearing checked. Oftentimes, the more you’d verbally try to engage with Grant, he’d eventually burst out into a dialogue off of a cartoon he’d seen (verbatim).
That was the loneliest time. He was three. I wasn’t sure what was in our family’s future. Assisted living? Just an eccentric young man? When it was just Grant and I, I felt completely alone. I couldn’t communicate with him, nor he with me. I was supposed to be his Mama. He didn’t respond to conversational questions. There was no reciprocal conversation. He never asked me any questions. Funny questions three year olds should be asking.
We never went out to eat. Ever. He couldn’t sit still for more than 3-5 minutes. Holidays were hard as well. Grant was only interested in the lights on the tree and the ornaments for the first 3 years of his life. He didn’t know who or what Santa was about until he was four- that was our first Christmas with him. It was wonderful. Before then, he had no interest in presents under the tree. He never understood the concept that there was anything in them- they were, after all, just boxes and that’s all he took them for. It’s the language thing again—his environment really didn’t make any sense to him. He didn’t open any presents on his own until he was about 4. He also was put off or fearful (not sure which one) of new toys. As early as one year old, if we gave him a new book or toy, he would have nothing to do with it until at least a full year later.
By the time Grant turned three or so and no siblings arrived, there were the constant questions from my employees and friends, “When are y’all going to have another baby??” I tried at some point to interject some quiet honesty, “We really have our hands full,” or “Grant is enough for us, we are totally happy with our family as it is,” etc. But that was never good enough. I was told how Grant would not be happy without a sibling. How it was wrong to have an only child. How this would not happen with my next child… SERIOUSLY? Every time a baby would come into our office where I work (which is at least weekly), my employees (about 20 females) would beeline to my office doorway: “Look at So and So’s baby!!!!!!” The visiting baby of the day was always smiling and acting content no matter who held it. My employees know I didn’t give a shit about seeing other people’s babies but they don’t care. They don’t understand it’s a knife in my heart. I don’t feel like I got to be a mom like they did. I was in a constant state of panic and despair. It was never happiness or milestones at our house.
I wish people understood or gave a shit that I have a child who is still recovering from a developmental disorder, and that it’s a constant struggle for him and for us. I wish people realized half the time when they brazenly bring a drooling, complacent child to my office doorway, I am typically dealing with a difficult decision about putting my child on medication (or more medication) or contemplating home schooling for the year because he’s suffering so badly in school. As I sit in my office with a lump in my throat, here comes the self-righteous baby brigade marching to my door.
It’s no different outside the workplace, either. At birthday parties now, Grant still avoids the crowd. He exiles himself to an empty room, and one of us has to sit with him to make sure he isn’t tearing the room apart. “Let him be!! He is fine! There is nothing in this house he can hurt,” the parent will insist and try to encourage us to join the other parents. But no- he’s not fine. Even though he’s chronologically a certain age, that’s not what his level of performance is. When parents insist we need to just ‘leave him be’ and “RELAX!” it makes my husband and I crazy. And hurt. We’re not taking turns sitting in your 4 year old daughter’s room with our 5-year-old son because we’re being weird and anti-social. We’re in here because Grant is really more on a 3 year old level overall and can’t be left alone in a strange environment or outdoors. And we’re concerned he’s overwhelmed right now. And by the way, this is no fun at all. In fact it totally sucks. No offense to your daughter’s room. In case no one here noticed my child hasn’t taken part in one damn second of your child’s party. No one ever asks what it’s like…
I overheard a comment at that same birthday party from a mother regarding how erratically and wild our child’s behavior was outdoors: “Good God!!! He doesn’t need anymore cake!!!!” He didn’t eat any cake to begin with, bitch. That would require his standingin line with a group of people and that’s something he’s not gonna do. The last two parties we’ve attended, he’s either left the house when all the kids gathered for presents and cake (walked right out the front door), or goes into an empty room. Naturally, he has to be watched, so we live in his solitude rather than he joining in our world. This has resulted in the loss of friendships. We began not going to many parties or functions that Grant was asked to, and so now we get no more invitations save a very, very few.
I asked a friend of mine to take me off the invite list to a Mom’s group. Childcare is provided while the mom’s hang out and chat. I was not up for comparisons, and it had become extremely difficult to be in mommy circles. It was making me highly aware of how different things were at my house. I asked her to take me off the list and confessed to her I had been depressed since the diagnosis had been made. I told her I also felt like I had nothing in common with any of those moms and there was no way Grant could be left in the toddler room, anyway.
My friend seemed to take offense to my feeling that this group wasn’t the place for me to find support. She said they have many moms dealing with very hard issues such asinfertility and a “variety of issues with their children.” She also added: So just know that we aren’t sitting around talking about quilting baby blankets…
Ouch. I tried to reach out and let her know we were very much tied down to our house and I was feeling depressed. I feel like in return I got chided somehow? I didn’t ask for a lecture about how hardcore the Methodist Moms were. Frankly, they are just moms of normally developed kids that are socializing. After this exchange, we never saw much of each other again. Her kids became busy with sports and social activities. Mine did not. Many of the friendships I enjoyed dissipated as my husband and I watched them enroll their kids in t-ball, dance, soccer, different schools, etc. All things my child was not ready or able to do despite his chronological age.
These chicks may not be talking about quilting baby blankets true enough, but …. does anyone else’s child’s bathroom look like a Meth lab like ours? Who else is crushing up pills and making concoctions just so their babies can sleep every night? And what of making decisions about adding schedule II narcotic medications during the day on top of that for focus? Do these parents still change diapers and sheets everyday? Who else is getting ugly looks and having people shake their head at you when your child hits you in the face when he gets over stimulated and has giant melt downs you know he can’t help?
There won’t likely be any running discussion of laxatives (most Autistic kids have GI problems), sleep disorder woes and medications tried, the insurance coverage issues, receiving services through the school system, and surviving in the school system would likely be the topic of most meetings for many autistic parents that aren’t home schooling their kids. Moms with Autistic children wouldl be discussing how your child doesn’t respond when you talk to them, stimming, medications, seizures, EEGs, mysterious and frightening regressions at different times that no one can explain or give you any hope or help with…. Fears that keep you up every night that your child won’t be ready to take care of himself after you are gone. Hearing your child say I love you for the first time after waiting for three years. None of that will likely be discussed at those meetings. Socialize, de-stress, and get in touch with your creative side all you like, ladies. That’s not the hand we were dealt at my house.
Kindergarten should have been fun. It was anything but. I have spent the last year fighting for my child at IEP meetings so he can have what he needs at school in terms of the proper support and services. His IEP called for Occupational Therapy at the beginning of his school year, and the county was “between therapists.” It was November before Grant began Physical Therapy. He is behind in handwriting because of his fine motor deficit in his hands. His schoolwork was also not being modified at the beginning of the year because his teacher was afraid he wouldn’t do well on his statewide school assessments. Grant was struggling without the modifications and he was miserable.
Grant’s school years will continue to be a fight. Grant needs individualized attention in the classroom, he is still learning the concept of language and comprehension, social skills, and receiving occupational therapy. Now we are adding medications. I am doing everything I can to make it so Grant will be a successful, independent adult, because one day we’ll be gone and won’t be here to care for him any longer.
A lot of other moms have had a very different experience. They have been able in many ways to just watch their children grow and absorb most everything they are taught. These moms got to experience their children wanting them and outwardly loving them. They experienced all the milestones, even if a little late. They filled out the books they were given. Got their babies’ pictures taken. Grant still won’t look at the camera. These children will thrive in social situations. My child will probably not be as socially proficient, but he has a photographic memory and excels at computers. He just does not recall it or store it the same way we do. I will never, ever forget the first conversation I had with my child. He was four years old.
Grant’s milestones are completely his own. I put away the baby books that want you to record “Baby’s First Year.” I never did put anything in them. Those milestones never came. He has his own path.