by Band Back Together | May 15, 2016 | Anxiety, Family, Fear, Happiness, Hope, How To Help A Friend Whose Child Is Seriously Ill, Love, Pediatric Caregiver, Speech Disorders |
Last week, my daughter Anna was on the radio! She was invited by Angie Evans to do the Triple Play Takeover on WCFX. She was able to request three songs. She picked “Baby” by Justin Bieber (of course), “Fifteen” by Taylor Swift and “King of Anything” by Sara Bareilles. She also was able to describe a prize for a giveaway, answer the phones, and do the weather. She even got to talk with Angie on air, and tell everyone a little bit about herself.
Of course she was a little bit nervous beforehand, but I think I was even more nervous for her. I didn’t need to be, though. She was a natural! She joked around, and even shared some entertainment gossip she had just learned!
Years ago, I never would have imagined this would have happened. You see, Anna’s been receiving speech therapy since she was a little over a year old. When she was a preschooler, I was the only one who understood what she was saying. I was constantly having to act as an interpreter. Speaking clearly and slowly enough for others to understand has always been a challenge for her.
Yet there she was, on the radio, speaking clearly and totally coming out of her shell. Doing the Triple Play Takeover was so much more than having fun on the radio for 30 whole minutes.
Instead, it was a huge milestone that she was finally able to achieve
by Band Back Together | Oct 22, 2015 | Asperger's Syndrome, Autism, Grief, Help For Grief And Grieving, How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting, Speech Disorders |
I am the mother of identical twin sons. They turned two in November.
At 12 months, they seemed to be moving right along in their development. They were walking, starting to say words; everything seemed fine. I was a little worried they were late in talking, but they were talking, so that was something. By 15 months, they still had very few words but they were both doing some signs and also had a full repertoire of “action” songs in their arsenal. By 18 months, there were no words. None. No signs. No action songs.
Everything was easily explained away as a boy-thing, or a twin-thing, or an identical-twin thing.
We tried not to worry.
Friday, they had their first visit with Early Intervention. I wanted to get their speech back on track as soon as possible. Language delays were our number one concern. Of course, in the back of our mind, we’d thought about autism, but we weren’t going there unless we had to. It’s too difficult.
After thirty minutes of watching the boys “play,” and watching their interactions with me, the Early Childhood Development teacher and the Speech Pathologist, there was an early diagnosis of sorts. They weren’t as concerned with the language as they were all of the other things: they didn’t really play with their toys, they didn’t really interact with, well, anyone in the room.
Early Intervention wanted to proceed with autism evaluations.
The next thirty minutes involved me, sitting on a chair nursing my four-month old. Trying to not to break into an ugly cry, trying to keep it together and sound somewhat intelligent until I could get all of these people who just brought my whole world crashing down, out my door.
My sons are perfect.
And I don’t know how to fix them.
by Band Back Together | Nov 10, 2010 | Shame, Stress, Stutter, Tourette Syndrome |
To speak. To form sounds, syllables, words, that when combined, convey a specific meaning to the listener.
A lot of people I’ve met take this ability for granted. They don’t contemplate their ability to articulate a certain sound in the brief moments before they are expected to respond or answer the question looming in the room. Others appreciate the hard work and seemingly miraculous events that occur to allow them to talk.
I’ve never known such bliss. For as long as I can remember, I’ve had a stutter. It is what my childhood neurologist referred to as a “hesitation stutter” in that I have difficulty moving past initial sounds.
Throw in a few ever-changing involuntary muscular tics, and you have a diagnosis of Tourette Syndrome, which is a genetic condition consisting of both verbal and motor tics. I rarely admit this as the root cause of my stutter because of the next question I inevitably get – “so why don’t you swear all the time, then?”
Well, I do, but it is completely intentional and not related to the 10% of Tourette’s patients who have coprolalia (involuntary swearing or inappropriate comments and usually how the media portrays Tourette’s).
It feels like a giant lump in my throat, paralyzing my vocal cords and restricting sounds from emerging. Stress makes it worse, as does lack of sleep, or too much sleep, or sometimes just the changing of the winds.
I have struggled with the mundane aspects of life, the things my husband does without a second thought. For me, they require meditation and at least 10 minutes to psych myself up.
Calling to schedule an appointment? Awkward. Answering the phone with the professionally appropriate, dictated script? Impossible. Going through a drive through window? Painful for all involved. Successfully navigating a phone interview? Screw it.
I’ve tried being honest and upfront with employers and customers (I have a very public-facing job. In this recession, I took what I could find. Call me a masochist), and sometimes it helps.
The sympathetic ones understand that my stutter does not define me, nor does it indicate a lack of intelligence. I can’t say that has been the universal reaction from everyone.
The ones who laugh and mock are the most painful. I’ve learned to have a thick skin, at least outwardly. I’ve learned their insults and degrading comments are indicative of their shortcomings, not mine. I thought it would get better once I was out of high school and into the professional environment, where “adults” would know better.
10 years later, I’ve found that’s true about half of the time.
I’m 28 years old, but I still long for just one day where I can say what is on my mind without struggling to get the words out. It sounds so stupid when I put it on paper, and it almost seems ridiculous in comparison to other people’s issues.
In the last 6 months or so, it has gotten worse, likely because of the stress of my current job. I’ve tried medications, but the zombie effect is counterproductive to successful employment, and my doctors took me off all of them two and a half years ago at the start of our child bearing efforts.
I’ve tried alternative therapies, yoga, acupuncture, long hot baths. Nothing helps for long.
I’ve learned to fight past it. Keep doing the things I want to do, and screw anyone else who doesn’t understand. I don’t normally talk about it except when absolutely necessary because I don’t want to be the whiny chick who feels sorry for herself. I keep my head down and go through life as best as I can in that moment.
I’ve noticed a common theme on this site – a lot of the posters say they don’t like to complain or talk about the issue in their post, myself included. I am so grateful for this forum and the creators for providing a safe, open environment for all of us to gather and support each other.
Sometimes we need encouragement, a listening ear, thoughtful words, or a place to vent without judgment.
Sometimes we just need to know we’re not alone
