It’s like there’s a time bomb always ticking in the background. The background of my thoughts, of my routine, of everything in my daily life. The closer it gets to E’s 4th birthday, the more panicked I feel. The more restricted my airways become. I don’t think I ever really really believed that he wouldn’t talk. I kept thinking, not my E, he will eventually. He’ll get that speech therapy and it’ll take off. But, here we are at almost 3.5. Still no speech. He is smart as a whip and communicates in so many different ways, but I feel like the day is winding down. I am in the 11th hour. That might be a slightly dramatic description. There are kids that talk after the 4 year mark, and I do still have time. But in this moment of my fears, it feels exactly the way described. I think it goes hand in hand with the stages of grief. You swing from acceptance, to denial, to bargaining, to depression and back around again.
It’s the not knowing that really kills you. It’s also the seesaw of optimism mixed with the “well, its a spectrum” lines you get from the doctors. They never will tell you just how severe your kid actually is. I spend my nights googling, searching other autism forums, just trying to find out what I am up against. What group of autism is my son actually in? I hate this spectrum stuff. The spectrum is too broad, and it slights everyone. You are given a blanket diagnosis, with over a million different outcomes, and you just have to wait to see where your child lies. If you ask, they give you vague, nonsensical answers about it, “Well everyone is just so different on the spectrum. Anything can happen.” No definite answers. Tell me then what is the purpose of this “spectrum diagnosis“? What good does it do me if I still have no idea the true prognosis for my son? And why is it an unspoken taboo to ask just where your child lies in the vastness of this spectrum diagnosis.
It’s as if you were to take your kid to the doctor because something is clearly not right. He is coughing, he has random fevers, he randomly throws up. You know something is wrong but you don’t exactly know what. You get to the doctors office and they confirm your worries.
“Well ma’am, you did the right thing by bringing him in. There is definitely something wrong with him.”
“What is it? What’s wrong with him?”
“It’s Childhood Illness.”
“Okay. What is Childhood Illness? Will it get better?”
“We are not sure what will happen with him and his Childhood Illness long term, or even short term. He could always have these symptoms, he could get rid of them, or he could end up having just half of them long term. It’s hard to say.”
“What should I do to help him?”
“There are 100 different things you can try. Some might work, some might not, and… maybe, its a possibility, that all of them will not do a thing.”
“Okay… well, is there one that would work better for his type of Childhood Illness? Could we get more specific?”
“Don’t get caught up in the labels, just accept your son and his Childhood Illness.”
“Can I talk to anyone else that has a child with Childhood Illness?”
“Oh definitely, there are tons of support groups. There are so many moms that have kids with this. That mom over there in the waiting room,” the doctor says pointing. “Her son has it too.”
“It kind of looks like her son actually has completely different symptoms than my child.”
“It’s still Childhood Illness.”
“But there is literally nothing the same at all between our two kids.”
“Well, that’s the way Childhood Illness goes. Read this book about it.”
“But, this book is about children who sneeze not cough and have chronic bloody noses. My son doesn’t have any of that.”
“Like, I said, it’s a spectrum. Just read it. I’ll see you and your son in six months to discuss how trying as many of those 100 things you can in that period goes. Try not to go bankrupt on the way.”
Outside of autism and other disabilities is this considered an effective plan of action? I feel like the doctors around me spend so much time trying to instill me with hope and optimism that they forget to fill me in on the realities. I know that nobody can answer the questions that I want to know about E. But just give me a ballpark. There is a big difference in my life long-term having a non-verbal moderately severe child with autism, and having a verbal child with moderate autism. I just want the facts. I am not alone in this. In the autism forums that I frequent, the pages are full of, “Tell me where my child is on the spectrum. Does your child, who is doing this and that, talk? What should I expect?”
Nothing from a medical provider can change E. They can’t change the future. But could they help me better prepare for it? In a situation where hope is a dangerous thing, what’s the harm in just giving the hard facts? If my hopes are low, I can only go up if he exceeds those expectations.
3 thoughts on “The Ramblings Of Pessimism.”
Oh Annie, hugs brave lady! You articulate it so well and it sounds so very frustrating.
When my oldest daughter was diagnosed with “long arm deletion of the 18th chromosome” at age 1 and I had to keep saying to the doctors – there is something wrong here…..- there were 10 known cases in the world – and all of them were in institutions. Doctors didn’t know where they’d go – it was very frustration and very worrysome. THe answers always were – we don’t really know – each case is different. Finally I went with the statement that medicine is an art, not a science. Yes science is part of it but not black and white – humans are all different in reactions to medicines, to therapy, etc – I finally decided that I would do everything I could to help her progress as far as she could – she was one of the lucky ones – able to live on her own with an aide once a week – holds down a job with help etc. Now due to better science and study – there are a lot more known cases of her problem. and all over the “spectrum”. The first few years were a stress and difficult time – but knowing that we did all we could to improve her life – made a difference…she was herself and we loved her – (but spent some sleepless nights!) It is so hard to not get answers…but hang in there – you will keep doing all you can and worrying/crying/laughing/loving is all part of it. Life is hard sometimes but you and E will make it thru the best he knows how. PS Such a cute kid – glad he’s my great great nephew? Right
I love you Annie, and E. I understand your drive and search for answers. I really believe your persistence and love will create a bright future for E. A mother’s love knows no boundaries. This lifetime is a leap of faith. Hold each other tight as a family. ❤️