Autism Momisms: 'The Dream'
A few nights ago, after managing a rather long and tempestuous battle, I lay in bed and thought to myself... Have the lambs stopped screaming yet, Clarice?
You see, with all of the noise, I thought I must have somehow stumbled into a horror flick. Soon enough, I remembered it was only my daughter having a tantrum. I’m quite convinced she has a great future in cinematography. At least her flair for dramatics would indicate as much.
This time, the trigger was over her bedtime attire. She thought it would be a good idea to wear a summer nightgown to bed. Given the 20 degree temperature outside, I felt otherwise and stood firm by my conviction. Thus began a brutal tug-of-war battle between a five-year-old girl, her frazzled mother and a pink princess nightgown.
An hour later, my daughter finally asleep, a pile of woulda-coulda-shouldas began infesting my brain… Maybe if I woulda just let her wear it, she coulda learned her lesson... let her see for herself how cold it gets. No, no, no she woulda not made this connection and coulda got sick. Then I woulda had to carry her, kicking and screaming, to the doctor. Maybe I shoulda just taken the gown out of the drawer before winter started. Why do I never think of these things beforehand? I can’t expect her to understand all of this yet, she has Autism!
She has Autism.
I will readily admit, I have a bad habit of throwing the A-card into any mix. I can’t seem to help it, as it does often present a difficult set of challenges. However, A-card or not, every parent goes through these battles and the nasty woulda-coulda-shouldas that follow. It’s natural to think too deeply into things. These are our kids. We want the best for them.
It all begins with ‘the dream’ – the one we have before our children are born. It’s the dream of having the most accomplished child in the world; straight A’s, lots of friends and excelling at everything he or she attempts, while we, the parents, sit on the bleachers and jubilantly call… That’s my boy! That’s my girl!
Through my first pregnancy, I had ‘the dream’, and throughout my son’s infancy, I held it firmly in both fists.
Parenting my son proved unexpectedly challenging. His behavior was different from the other children his age and his development lagged behind as well. Despite this, his pediatrician never seemed concerned, so I began questioning myself. After all, I’d followed the same recipe as my mother when she'd raised me. Was I a terrible cook, or a terrible mother?
Finally, we moved to Lilburn, and after seeing a new pediatrician, my son was referred to several psychiatric experts who diagnosed him as having an Autism Spectrum Disorder. On one hand, I felt relieved because I finally had an answer. I wasn’t a terrible mother after all. On the other hand, I was absolutely terrified. At the time, my only point of reference was the movie, “Rainman”. I had not anticipated this. This was not part of ‘the dream’. That’s not my boy.
That’s not my girl.
Count your blessings. This is usually the first thing any observer will advise, and true, it is healthy to do during any difficult ordeal. What I’ve learned from these experiences is it’s also quite healthy to grieve the loss of ‘the dream’. After all, with any diagnosis, one often begins with Denial. It is only through the stages of grief we can finally reach Acceptance. How else is one expected to recognize the pieces, pick them up and move on?
Once moving again, you realize, yes, ‘the dream’ is indeed gone. However, you’ve now awakened to real life now – one that will surely unfold into something more beautiful than a dream. You just have to wake up, open your eyes and see it.
I am the mother of two children living with an Autism Spectrum Disorder; my son, age 8, and my daughter, age 5. Our journey so far has taught me to never take a single word, smile, or moment of eye-contact for granted. This makes me just like every other parent - each of my children just like every other child. Our lives are really not so different. The only difference is often in how we are perceived.
I won’t lie to you, there are still days when I feel angry over our particular set of circumstances. Other days, I often wonder if they are putting the wrong people in the spectrum. Writing about it all allows me to gain the proper perspective. Sharing it through this blog, I hope it does the same for others.
I am honored to be given the opportunity to write an Autism Blog for Patch. Mind you, I don’t consider myself an Autism expert, rather a 40-whatever-year-old mother with some experience on the subject and a propensity towards sarcastic humor. Right now, I send these words from atop an embarrassingly large island of unfolded laundry. The only things missing are a lawn chair, a pina colada and… well, the ocean, unless you count the blue water in the nearby toilet.
Whether you have children in the spectrum or not, I hope you’ll be able to relate, gain something positive within my words, even if only a smile. Thank you for reading and I hope you’ll return again.
Theresa Waldrop
12:52 pm on Thursday, February 2, 2012
Welcome, Janie, and thank you for blogging on Patch! We have the same PJ -- and all clothes, really -- problem with our daughter with autism. She doesn't seem to feel cold, or heat, for that matter. You just have to pick your battles and hope you're choosing the right ones most of the time, don't you?
Janie Ruth
1:23 pm on Thursday, February 2, 2012
You're welcome, and thank you again for the opportunity!
Janie Ruth
1:20 pm on Thursday, February 2, 2012
Absolutely, and clothing often centers as the battles we have to pick and choose over as well. Aside from an aversion to wearing long sleeves, we also have the 'coat battle' every single morning. Does not want to wear it and will fight tooth and nail to keep it off! I finally bought a soft, cotton coat with no vinyl lining (outside or in). She's been a little better about wearing this one.
Theresa Waldrop
1:24 pm on Thursday, February 2, 2012
Same with my daughter. She will wear a fleece jacket, but the coat is a struggle and sometimes I don't feel it's worth it. But I'm afraid her school sooner or later will ask if the family needs a coat donated! Thank goodness we live in Georgia, where it's more often warm than not.
Janie Ruth
8:10 am on Friday, February 3, 2012
Sometimes we find the issue is centered on obsessive compulsiveness versus a sensory-related issue. Take this morning for example... My daughter woke up and got dressed without a problem. Then, just as she was heading out the door to get on the bus, she started protesting over the shirt she was wearing, something she'd done the previous 3 mornings. It was as if it had become a habit she couldn't quite break. We managed the situation by redirecting her attention, tickling her and making her laugh. Doesn't always work for us, but thankfully, it did this morning.
Colleen Walsh Fong
11:30 am on Friday, February 3, 2012
Thank you for this beautiful and honest description of your experience.
My brother was finally diagnosed with Asperger's Syndrome at the age of 58. He lived a tortured life for years, and as he described it to me, he always looked around to see his peers 10 steps ahead of him. So, he would work and work and so proudly arrive at that spot, only to see they'd all advanced another 10 steps. What a feeling that must have been! His "condition" affected our entire family. Of course, that was before a name could be put to it. I am so thankful to see all of the interventions available now. And there is a girl with Aspergers on Glee! I have to admit I cried the day our local high school put the basketball manager, all suited up, in to play. He made a basket! I believe he has Downs Syndrome.
The more we call attention to the various conditions and their challenges, the more awareness we build. Thank you for your courageous share.
Patty
12:53 pm on Friday, February 3, 2012
I am Janie's son's third grade teacher. He is very bright and an absolute joy to teach! He is full of excitement and just loves to learn!! Being around him makes all of us smile.
Janie Ruth
8:25 am on Saturday, February 4, 2012
Patty, I want you to know how much I appreciate you. You have a keen sense for teaching an all-inclusive classroom. I especially love the strategy you use to encourage my son's peers to keep him going in the right direction. (Ex. On Field Day, when you gave another student the job of making sure my son made it a particular event) Turns it more into camaraderie versus correction. It is absolutely brilliant teaching!
Janie Ruth
5:30 pm on Friday, February 3, 2012
Thank you for reading, Colleen and Patty! Also, a much appreciative shout-out to the editors of Tucker Patch and Loganville-Grayson Patch for featuring Autism Momisms on their pages today! Thank you all so much!
Kevin Madigan
8:24 pm on Friday, February 3, 2012
My pleasure, Janie. Please keep writing. (I should point out that I have an autistic child too. I use the term "child" loosely... he's 21 years old!)
Sharon Swanepoel
6:16 pm on Friday, February 3, 2012
Thank you Janie. We have a very active F.A.C.E.S. organization in Walton County so I've no doubt your contribution here is much appreciated in our community. We have a huge fundraiser in December that raises money for a summer camp for children with autism. Here's a link to the one from last year - Matt Yancey did a great job on the video. http://patch.com/A-k2xw
Janie Ruth
9:13 pm on Friday, February 3, 2012
Thank you for the link. My daughter attended a camp in Loganville this past summer.
Theresa Waldrop
10:25 pm on Friday, February 3, 2012
Love the video, Sharon.
Ronnie Snitker
7:32 am on Saturday, February 4, 2012
Just yesterday I thought of and praised God for the special moments I had with your little girl. Those moments included some of those trying issues with coats, socks etc. but also those special one on one times when others were napping and we were learning. You are right, they were more beautiful than the dream. You are a great mom!
Janie Ruth
7:52 am on Saturday, February 4, 2012
Your words touched my heart, Ronnie. Thank you for all your hard work in helping my daughter find her voice. You'd be amazed to see how much her language has grown since you last saw her!
Ronnie Snitker
8:24 am on Saturday, February 4, 2012
Your little girl touched MY heart! (and my shins a few times). I would love to visit with her sometime and see her progress. I hope our decision was a good one. Contact me if you need a break and I can help.
Janie Ruth
10:02 am on Saturday, February 11, 2012
We'd love to see you again sometime, Ronnie. Did we made good decisions? Yes, absolutely. As long as we do the best we can with the information we have at the time, it's always a good decision. Did I carry away any hard lessons from them? You bet, and I will most likely share them here in the future. We don't yet have all the answers for Autism, thus we're still somewhat the pioneers in all this. Our decisions are often going to be a shot in the dark. Some will light the way and some won't. Still all good, because I firmly believe my daughter will grow up stronger from everything we did or will do for her. Things always happen a certain way for a certain good reason.
Regina Waldrep
10:07 am on Saturday, February 4, 2012
Really enjoyed your blog, and all of the comments. We don't have children, but a niece and nephew (differnt families) with Autism spectrum disorders. My core beliefs tell me that we are all in this together...not just the kid thing, but the "life" thing. It's so hard to relate when you are not in a particular situation. I mean we all have dreams, we are getting older and struggling in the process...the 40's kinda suck, really! hehe. But, I digress. Blogs like this unite us, give us a glimpse into the lives of those around us - and often help us love harder. Thanks for sharing, and making the connection to "average." Really interesting.
Janie Ruth
12:30 pm on Tuesday, February 7, 2012
Thank you for encapsulating my thoughts so eloquently, Regina! And yeah, in some ways, the 40's do kinda suck. :)
marlene buchanan
8:39 am on Saturday, February 11, 2012
Janie,
I have enjoyed your writtings on autism. You have done an exceptional job of making like with a special needs child very real. I have a special needs son who will soon be 30. There are a lot of Asperger's Syn walking around, undiagnosed. Through my years working in education, I am pleased to say that special needs children are better accepted and treated than they once were. I am not saying that every thing is fine, but it is a better acceptance.
When James was born there were not as many resources and we had to dig for a lot of what we got. I spent 34 years in public education, the last 4 helping just special needs families. I would love to share the resource guide I began 30 years ago with you. It might help you to find other resources and you might help me with new information.
Take care of yourself as your love those babies.
Theresa Waldrop
8:46 am on Saturday, February 11, 2012
Marlene, I would love to see your resource guide -- I have a young daughter on spectrum. Maybe other Patch readers would be interested?
Janie Ruth
9:21 am on Saturday, February 11, 2012
Hello Marlene. My heart goes out to you, as well as other parents with older children in the spectrum. I can't even imagine how much more difficult it must have been raising a child with Autism prior to the 21st century, much less 30 years ago! Even today, the day-to-day lives and issues of adults in the spectrum are not highlighted nearly enough. We only hear about the young children. For this reason, I love hearing from parents like you with older children in the spectrum because it's a perspective I don't yet have but would like to provide a voice. Love your idea of sharing information. Until I can set up something better, please feel free to email me at autismmomisms at yahoo dot com. Thanks for reaching out, Marlene!
Mekonnen Askale
12:47 am on Monday, April 2, 2012
Janie
Thank you for your beautifull blog. I have son who is in spectrum . I am from Africa I came to US with big dream of a better life, when we found out our son has autism I was crushed, but I am so glad my son was born here I can't even imagine what will I do if I had him back home, every single day I thank God for my blessing- my son.
Janie Ruth
6:59 am on Monday, April 2, 2012
Thank you for your comment, Mekonnen! I'm very glad you came to the US, too. I have found that things always happen for a very good reason. :)
Lynn Hubbard
11:34 am on Wednesday, April 18, 2012
Welcome to patch! My son has fibro and is extra sensitive. Even today he still picks out his clothes by feel rather than look. They have to be soft and or silky.
Here's his story: http://healthmad.com/teen-health/fibromyalgia-in-teens/