When Something Is Wrong
I work in the mental health field because I want to help people help themselves.
Specifically, I work with children. I’ve been bitten by an angry 5-year old, cursed at by an angry 17-year old, and had adventures with children all ages in between. Some avoid me in public, others come up and hug me. It’s the life I’ve been used to since I started working in the field close to 10 years ago.
I’m an expert with the speeches I have to give a lot. The one for the parents that starts with, “This has nothing to do with you. Nothing you did caused this.”
I’ve always kinda assumed it was at least somewhat comforting.
Fuck that. It’s not.
My adorable, amazing 2-year old is non-verbal - completely non-verbal. Even typing that makes my chest hurt. I was convinced he was a later talker. His older brother, who’s almost 5, was a late talker and now won’t be quiet to save his life. But this is different.
He doesn’t talk. He makes some noises. As he got closer and closer to 2 I got worried. At his 2-year check-up, his doctor told me that we could do a speech evaluation, but he figured the most “therapy” we’d need was to teach us how to MAKE him talk.
Source: bandbacktogether.com
It’s Not Fair, Why Autism?
Approximately 1 in every 88 children has an autism spectrum disorder.
This is one parent’s story:
“God never gives you more than you can handle.”
“You must be a very special mommy to get such a “special” child.”
“Are you SURE he is autistic? He just seems quiet.”
“Well, at least autism isn’t fatal.”
Stupid things people have said to me.
Growing up, I always read Women’s World magazines, and they always had sections about moms with special needs kids. I always marveled at these mothers: how strong they were, how they never complained, and how they loved their kids just as they are. Still, I could never fathom BEING one of those special needs moms.
When Andrew was born, he was a whopping 12 pounds and four ounces - a giant bouncing bundle of joy. Though he had a seizure at three days old, he was a healthy, happy baby. Never any trouble. Perfect from his fat little toes to his bouncing blonde curly hair.
At 18 months, I noticed he wasn’t talking as much as I thought he should be. Since he’d had a seizure, I was routed to the children with special needs department where they sent out two chipper 25-year olds to evaluate Andrew. They played with him, whispered, and wrote notes. They told me that, yes, he was behind and he would now be visited by a special educator and a speech therapist.
Fast-forward a few months.
Source: bandbacktogether.com
Ask The Band: When Children Break Your Heart
Here at The Band, we believe in kicking stigmas to the curb, flinging glitter, and shining a light into the dark. And now?
Your bandmate needs a sounding board.
It’s time to Ask The Band!
My husband and I got married four years ago but we have been together and sharing families for six years.
I have two children, a 16-year-old girl (who thinks she’s a diva) and a 10-year-old son with high functioning autism.
My husband has a 20-year-old son who was 15 when we started dating. He’s always had such a big, sweet heart. He has struggled with learning difficulties, but he has always been a wonderful kid. He moved in with us full-time at age 17, and last year his girlfriend moved in with us, as well.
They got into a fight last November, and she moved out.
A few months ago, I saw a picture of her on Facebook. She was very pregnant.
I called my son and told him. He later learned that she was having his baby, and had been afraid to tell him.
Source: bandbacktogether.com
Parental Failure
So many of us have struggled with the challenges of being a parent.
This is the story of her struggles.
I’ve kept my fears and feelings bottled up for so long that I’m almost afraid to let them out. I’m afraid to to let them go.
Here goes nothing.
Even as a teen, I was afraid of being a mom. I felt my issues meant I shouldn’t have children - I didn’t want to be responsible for screwing up another’s life like I had my own. Sometimes I wish I had listened to those feelings.
My daughter, she’s a spitting image of me and I have no idea how to help her. She’s in the fifth grade and extremely intelligent, which she sees as a curse.
She has ADHD. We struggled for many years before getting a diagnosis. She’s struggling socially, trying to fit in, trying not to be different. She feels everyone hates her - I think she truly believes that they do.
Her teacher says that the kids at school accept her for who she is, yet she doesn’t feel that they do.
How can I help my daughter if I can’t help myself? How do I ease the pain of rejection when I feel the same rejection? I want to tell her it’s okay to be different; that the world will accept you. I wish I believed that.
Source: bandbacktogether.com
Jealousy
It’s an ugly thing, jealousy - it doesn’t serve any good purpose. I try not to be jealous but I can’t help it. I’m riddled with jealousy. I have many things to be grateful for, and yet I still feel cheated.
I like to think I’m a decent human being - I try to do the right things. I’m kind, rule-abiding, and I work my ass off. I’m currently married to a great guy who knows most of my flaws and still loves. I have two children who I love more than anything. I have a job, a place to live, and food on the table. I have a few friends who are more like family - that’s a blessing. I’m healthy. I’m not in too much debt and I’m rebuilding my credit, and I’m now on the border of fair and good which is a huge improvement.
But I’m sad all the time.
Despite trying my best, I’ve had to file bankruptcy, I’ve had my car repossessed, I’ve had my lights shut off, my bank account levied. I’ve been laid-off and I’ve been disowned. I’ve been involved in three car accidents - none were my fault - but all caused huge problems and inconveniences. I’ve had to deal with all those things on my own - dig my way out on my own.
Source: bandbacktogether.com
The Beginning of A New “Adventure”
I’m using “adventure” loosely here.
We found out four days ago that my son is at “high risk” for autism. I was only worried about his lack of language (he’s two and only says “mama,” “dada,” and “licky, licky”), but his new pediatrician noticed other signs - signs my husband and I just thought were cute parts of his personality. Instead, they are signs of something wrong - signs that I didn’t see or that I was told to “wait and see” about.
I am waiting for an appointment with the doctors at Children’s Hospital here in Seattle; we should have an appointment date by the end of next week. This limbo time is the worst.
Source: bandbacktogether.com
The Beginning Of A New “Adventure”
I’m using “adventure” loosely here.
We found out four days ago that my son is at “high risk” for autism. I was only worried about his lack of language (he’s two and only says “mama,” “dada,” and “licky, licky”), but his new pediatrician noticed other signs - signs my husband and I just thought were cute parts of his personality. Instead, they are signs of something wrong - signs that I didn’t see or that I was told to “wait and see” about.
I am waiting for an appointment with the doctors at Children’s Hospital here in Seattle; we should have an appointment date by the end of next week. This limbo time is the worst.
Right now I watch him more closely, differently, taking note of any and all “quirks” to tell the doctors and let them decide what is and isn’t important. I noticed two tonight that hit me like bricks (one fairly literally). One, he really doesn’t enjoy change. A song came on the satellite radio (one he had never heard before), and when it ended and the new song came on, he threw a fit and gave me a fat lip. It took everything I had not to cry - not from physical pain but from emotional pain.
The other hurts far more. I watch as his sister (Lil’ Miss), who is four, tries so desperately to engage him - to interact, play ball, or dress up. He doesn’t want a thing to do with her. Well, actually, he pretty much doesn’t want anything to do with just about everyone. He will sit on us to watch a show for a moment, get our attention by throwing food he wants at us, or come to us for a hug (or hit us) if he’s mad/upset/hungry/hurt. But I feel so much hurt for my daughter who wants so badly to be his big sister and play with him. In a few years she’s gonna want to teach him how to tie his shoes and how to throw a ball, and he won’t want anything to do with her.
Source: bandbacktogether.com
Julia At Support For Special Needs Goes To 11
To celebrate our one year anniversary, we’re going to work to highlight other sites around the Internet that are Doing Good. Every Tuesday at noon (central time, yo), we’re going to bring you a story of why someone else chooses to devote their time Doing Good.
You know our beginnings. Now it’s time to see theirs.
I’d like to introduce you to Julia from Support for Special Needs. Becky and I had the pleasure of meeting Julia at Type A Parent Conference in June and fell madly in love with her — after we realized she wasn’t THE MOVIE STAR Julia Roberts and realized she was A BIGGER AND BETTER STAR than Julia Roberts. She’s got an amazing site that helps find common ground among those who are raising children with special needs. But it’s not our story to tell, it’s hers!
Source: bandbacktogether.com
On Being Addison, A Child With Asperger’s Syndrome
I spend a lot of time trying to explain Asperger’s Syndrome. I’ve become quite educated about Asperger’s since we knew that Addison had it before the doctors would consider testing him for it.
When someone asks me about it, I usually start by explaining that AS takes away the affected person’s ability to understand the effects their actions may have on other people. In Addison’s world, what Addison does is only of consequence to Addison.
People with Asperger’s are usually described as aloof, cold, or even rude. To you, it may seem undisciplined for my child to tell you that he doesn’t want to talk to you right now and to leave him alone. To Addison, this is just fact. It isn’t meant to be hurtful. There is no way to teach social grace to a person with AS.
People mean well. They think they have the answers. People generally believe that they can fix Addison for me. I stopped letting it bother me a long time ago, but it still doesn’t go unnoticed.
Source: bandbacktogether.com
Autism And Glitter
“He’s autistic,” said the doctor.
At that moment, I felt all of the hopes and dreams I had built up for my family crumble into dust. I felt it, in the same way you feel a baseball bat hitting you in the head.
I had considered the possibility of autism. Of course I had. At the age of three, my son had a functional vocabulary of fewer than ten words, and he just didn’t do the things that other kids do. But right up until that moment when the doctor told us it was autism, I allowed myself to believe that this was just some kind of delay that would resolve itself with time.
Autism does not resolve itself. As of this moment, we were dealing with a lifelong disability.
The doctor did not give us a great prognosis. In fact, it was pretty darned bleak. The same kind of bleakness you’d get if you stuck us in the middle of the desert with no water within a 100-mile radius.
Source: bandbacktogether.com
BB2G World Tour: Strangely Grateful
I have many things to be grateful for. Right now, though, I am most grateful for the thing you’d least expect.
I am grateful that my two year old daughter has been diagnosed with Pervasive Developmental Disorder. I am grateful that she is on the autism spectrum.
Please don’t misunderstand – it’s not that I’m happy that she is considered disabled compared to typical children. I’m her mother; all mothers want their children to grow, learn and develop just like their peers do. I certainly didn’t spend my third and last pregnancy thinking, “Gee, I hope this baby turns out to have special needs.”
What I am grateful for is the road we chose to take as we started the journey of raising this precious little girl. I am so glad I shared my concerns about her lack of speech with her pediatrician when she was 18 months old. I am pleased that we chose to have my baby evaluated by our local Early Intervention agency, despite the pain of watching strangers encourage her to perform tasks that she couldn’t do. I am happy that we accepted the agency’s offer of weekly therapy for my daughter.
Source: bandbacktogether.com
Looking For Big Red
No, not a lumberjack. Not even a tall redhead who’s worked the diner for 30 years. My niece Marie swears she sees red haired children in her future, and in 5.5 years (I know you’re reading this!) it may happen. But for me, the search over the past several days was not as complicated. I was looking for gum.
You see, when I travel to Springfield, where my almost 18-year old daughter lives, it’s not like any other trip. My daughter has multiple disabilities, and since autism is among them, some errands take on an almost military importance.
Like gum shopping.
Oh, in the past it’s been light-up t-shirts, beef jerky, and skorts, of all things. And when you find something that works, you use it.
So on my recent visit, Joanna fell in love with my mom’s Big Red gum. I myself prefer my cinnamon on toast, but I digress.
Source: bandbacktogether.com
