apraxia of speech

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Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

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Questioning the origin of my vocal spasms

#VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.

What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .

Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.

But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)

Apraxia of Speech: A Mom's Response to a Person's Comment

My boys I’m sure you didn’t know who I was, sitting in front of you watching my two littlest guys. They were singing songs about bugs for an end of the year kindergarten performance. I’m sure you didn’t know that was my youngest son on the end, smiling as he played with his pipe cleaner “tentacles.” I’m sure you didn’t know I heard your comment when you said, “That boy on the end isn’t even singing!” I’m sure you didn’t know that while I proudly watched both my boys, the comment stung. I’m sure you didn’t know that he is on the autism spectrum and is predominantly nonverbal due to speech apraxia, even though his aide sat next to him. I’m sure you didn’t know how many hours my little guy has spent in speech to be able to vocalize the words he does today. (Two to three days a week, an hour at a time for the past three and a half years.) I’m sure you didn’t know how many nights all six kids and myself piled on my bed practicing these songs with him. I’m sure you didn’t know how he would hand us the papers with the lyrics on them and smile as we sang them with/to him. I’m sure you didn’t know how we worried if he would even be able to stand with his classmates and be a part of the performance, since he had melted down during practices. I’m sure you didn’t know my heart was exploding with pride that day to see both my little guys on that stage, “singing” their bug songs in their own unique way. I’m sure you didn’t know that while that boy on the end may not have looked to you as if he was singing, in my eyes, he was making beautiful music. The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

Evana Sandusky

The Answers I Wish I Had When My Baby Was Diagnosed With Down Syndrome

I sat in the cold, sterile NICU staring at my newborn baby. I’d just found out my daughter had Down syndrome, an atrioventricular heart defect and was in congestive heart failure. An open heart surgery was in my sweet baby’s future. As a first-time mother at age 25, I was completely caught off-guard with these diagnoses. With Jaycee’s birth going nothing like I had planned, my mind struggled to process what was happening presently and what would happened in the future. So many questions… about my life, Jaycee’s life and our family’s future. It was overwhelming knowing I had none of the answers. Only time would reveal them. Ten years later, I have the knowledge I wanted while I held my infant daughter with a million questions running through my mind. Will Jaycee survive the open heart surgery? Yes. At 3 months old, the surgery will go without a major complication, but she will need oxygen for three months afterwards. Unfortunately, small leaks in her valves will result in another heart surgery when she is 2. Getting the news that a second heart surgery would be needed would be devastating for a period of time, but this won’t be the last heart issue she has. When will I “get over” my child’s diagnosis? The first year will be tough. Actually, it will be the toughest. Adjusting to her Down syndrome and heart problem while to trying to start Jaycee in therapy to address her developmental delays will just be the beginning. The first year will also include a failed hearing test, which later prompts tubes, and a referral for strabismus surgery when Jaycee’s eyes start turning in. Asthma will also become an issue before age 1. You will be pushed to your emotional limits. Things you believe about God and faith will tested. While you sit and try to figure everything out, you realize it’s very easy to love Jaycee. Eventually, you understand there will be things throughout her life to “get over,” and that acceptance is a process, not a definitive moment. Will I be able to add more children to our family? Yes. You will have a son a few years later. He will be healthy and develop ‘typically’ (except for a few minor issues). Seeing him grow up and surpass Jaycee in some areas will be hard at times, but you quickly learn to view each child on their own life path. Jaycee and he will be great friends until we play too many “Frozen” songs in the van. Then, he will get annoyed. Will my marriage suffer? Jason and you have stayed together through everything. There have been stressful times without a doubt. Together, you have worked through them all. Date nights become increasingly hard. Most of the quality time is found after the kids go to bed, which is thankfully at 8. You both remain dedicated to the things you vowed to do. You never knew “for better and for worse” would meanwatching your daughter have several surgeries, be on a ventilator a couple of times for illnesses, and be in so many emergency health situations. Will Jaycee be able to read? Yes. In pre-school, Jaycee was memorizing sight words and reading them “aloud” through signing. Her ability to memorize is one of her strengths that you found early on. Currently, Jaycee is reading first grade material, which is pretty good considering she says less than 30 words. Her expressive vocabulary is hindered by severe childhood apraxia of speech, but she uses sign language and her speech generating communication device well. Sometimes, you are sad because your child can’t say much, but this eventually just becomes a fact and doesn’t feel like a loss. Will I be caring for Jaycee forever? Ten years into this journey, I can say that you are planning to be Jaycee’s caregiver long-term. Given her limited speech and daily medical interventions, Jaycee requires fairly intense supervision and care. Things could change, but realistically speaking, Jaycee will most likely never live independently. But here’s the thing, it doesn’t bother you anymore. The thought of caring for her the rest of your life no longer overwhelms you. You love her. Whether she lives with you until she’s 18 or 45, you will help her as long as you can. She is your daughter and friend. Somewhere through the years the thought of caring for Jaycee forever changed from sadness to love. There have been moments in Jaycee’s life when her future wasn’t guaranteed. These moments have taught you the value of appreciating each day with her and solidify one key thought: Life is better with Jaycee. Follow this journey on A Special Purposed Life.

Katie Paulson

To Super Bowl MVP Von Miller, Who Gave Me Hope Before My Son's Surgery

In 2011, a year before I became pregnant with my son Von, I was watching a Denver Broncos game. It was a really nice fall day, and the Broncos were winning. I’ll never forget the hard-hitting linebacker. He would strip the ball from the opposing quarterback’s hands, and he had a ferocity in how he attacked the opponents and drove them to the ground. I looked at my husband and said, “Von Miller is a beast.” I had been a fan of his since his day at the draft. He appeared so different from the rest of the players. Even the checkered shirt and purple tie he wore that day stood out to me. He made an impression on me that day. When the Broncos picked him, I instantly became interested in the team. I knew Von was a unique talent, and he could be the center of the team. It was clear to me that day in 2011 that he was going to be the reason the defense thrived. It wasn’t until that day I even considered the name Von for a future child. I looked at my husband, and I said if we have a boy I really like the name “Von.” The name felt strong and brave to me. It felt proud and invincible. I felt as though any man named Von would be able to accomplish almost anything. My husband looked at me and said, “We aren’t naming our child after a football player.” A year passed, and in 2012 I became pregnant with my son. I remember bringing up the name again. My husband liked the name but said, “If we pick this name, we are not naming him after Von Miller.” As we explored the origins of the name, we learned it was a Norse name, a very old name. Then we looked up the meaning. Von means “hope.” I remember looking at my husband and saying,”Hope is a powerful word, and it means to me that despite all adversity we can always have hope.” That sealed the deal for my husband. When the 20-week ultrasound showed a boy, we knew our son would be Von Arthur. 2013 for my son Von was incredibly rough. He was diagnosed with panhypopituitarism, and he spent a week on life support. He battled respiratory syncytial virus (RSV), whooping cough and had eight ear infections. As the year progressed and 2014 moved forward, he continued to rally. My son started to walk in April of 2014. 2015 was a year of so many milestones for us. He started speech and occupational therapy in May 2015. He was diagnosed with sensory processing disorder and apraxia of speech. Through our team, my son learned better balance, developed more advanced fine motor skills, and in September 2015, he learned to talk. In 2015, the Denver Broncos defense was #1 in the league. They were led by a shaky offense that had an injured quarterback most of the season. Thankfully the defense with the help of Miller kept them alive in the games. It wasn’t until the Super Bowl that Von Miller really broke out. He swarmed around the field, and he tackled the quarterback multiple times. He forced two fumbles, and with his efforts the Broncos won the game. He was named Most Valuable Player (MVP). A week before the game, my son Von was delivered some terrible news. In addition to his other health issues, he now needs open-heart surgery. The past 10 days have been a blur for me since the news. I’ve had to leave work, manage care of my son, and prepare for him to have the biggest surgery of his life this spring. The cardiologist said his mitral valves will have to be repaired or replaced due to mitral valve stenosis. This has rocked our world. We know Von will have many mountains to climb through the surgery and recovery. Our lives are flipped upside-down as I’m now unable to work due to the severity of his disease. It’s been hard to find a sliver of hope during the past 10 days. During the Super Bowl, as I watched Von Miller attack the offense, I felt hope for the very first time. Then when he was named MVP, I felt like all things were possible. Despite adversity and injuries, he came back and won MVP as a defensive player. When I woke up the next morning, I realized Von Arthur is going to be the MVP of his heart surgery and recovery. We have no idea what the journey will be, but we know he has hope. Thank you Von Miller for giving me hope. Thank you from the bottom of my heart. You were true to your name. Katie’s son, Von. A longer version of this post originally appeared on Without A Crystal Ball. The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

5 Mighty Sports Stories You Don't Need to Be a Sports Fan to Love

Maybe you’re not a huge sports person. Maybe your favorite parts of the Super Bowl are food and commercials. Since that’s the case for a lot of people, we thought we’d round up some of our favorite Mighty sports stories. The best part? You don’t need to be a fan to understand why we root for moments like these to happen. 1. Danimal’s Army In 2014, when a peewee football team’s official water manager, 6-year-old Danny, was being bullied because he wore suits to school and had difficulty communicating due to apraxia of speech, his team stepped in. All 40 boys wore suits to school to support Danny and send a message to his bullies. It worked. Months later, Danny’s mom told The Mighty the only reason kids call him out now is to say they saw him on TV. 2. –> We’ve written about brothers Hunter and Braden Gandee a few times on The Mighty because their relationship is something else. Last year, Hunter, a sophomore on his high school wrestling team, carried 9-year-old Braden, who has cerebral palsy, on his back over the course of a three-day, a 57-mile walk, –>. The year before they walked 40 miles. To date, the brothers have raised more than $200,000 and opened the CP Swagger Shipyard, an inclusive and accessible playground. Sports Illustrated named Hunter its High School Athlete of 2015. 3. A Special Olympics Pep Talk Last summer, Los Angeles hosted the 2015 Special Olympics World Games. We met up with athletes from all over the world and asked them, “How does someone achieve their goals?” Their responses are worth revisiting: 4. –> Last April, Kayley Drake set out to run the 15th annual –>. The 24-year-old from Yukon, Oklahoma, has cerebral palsy and was approaching the 12-year anniversary of a –>. Around the 10-mile mark, when Drake’s energy began to falter, she thought she’d failed. Two firefighters who’d been walking the race in their gear, noticed this happening and offered to help. Together, the three completed the 13.1-mile race. Garrett Matlock (left) and Caleb Bryant help Drake across the finish line. Photo credit Traci Cook 5. The Zoom Soldier 8 In July, Nike debuted a sneaker for people with disabilities. The shoe was inspired by Matthew Walzer, a 16-year-old who has cerebral palsy. The teen wrote a letter to Nike asking the company to consider developing a shoe designed for people who have trouble tying shoelaces. “My dream is to go to the college of my choice without having to worry about someone coming to tie my shoes every day,” he wrote, according to Nike. “As a teenager who is striving to become totally self-sufficient, I find this extremely frustrating and, at times, embarrassing.” Nike listened. Do you have a sports story you’d like to see featured on The Mighty? Send one to community@themighty.com.