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World Voice Day post #WVD

Well, before World Voice Day ends, I guess I should follow through on my impulse this morning to post something about it, spawned by a suggestion from the National Spasmodic Dysphonia Association. I guess I should start with I don't actually have a diagnosis for my vocal spasms and the related breathing, and sometimes swallowing issues, #Undiagnosed but SD was one of the working assumptions by several people in my life (medical professional and otherwise) for a long time. I've been questioning if we got it right recently, but am not sure I'll ever really know, given the lack of specialists arouhd here, and several other factors. Or, for that matter, how much good it would do me, other than just knowing, given the lack of research and knowledge that exists on some of the other possibilities.
#Dystonia #VocalCordDysfunction

Anyways, combined with some of the #CPTSD #Trauma #PTSD issues, and the #Autism and #AdultDiagnosis and #SensoryProcessingDisorder #SensoryIntegration issues, I've been dealing with voice issues, and difficulties with #speech and #SpeechDisorders all my life. It was only by giving up on speech as my main method of communication that I was able to learn that there was a purpose for speech, and that it sometimes did have its' uses. #CommunicationDisorders after many years of using AAC for any communication situation I wasn't comfortable in, I am slowly coming to see that not only is speech not the enemy, nor is communication as a whole, but that despite my #CentralAuditoryProcessingDisorder , sometimes I do also prefer to hear certain people's voices, and communicate with them in real time, and through this very difficult medium (for me) with them.

Having been allowed to take control of how I communicate in communicative situations has made a world of difference for me, and changed my whole perspective on socialization on general. Especially as diversity is becoming more accepted in society (mostly. Don't get me started on the backsliding I see happening during COVID!) so that there is less animosity and more patience exhibited by society when they see me using AAC.

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I am a Keeper of the Storm.

My grandson is back in the psych ward Baker Acted again. I am, his biological maternal grandmother (Nanny). The court awarded me full guardianship, he's now 23 yrs old. I have been a constant figure in his life since he was 4 months old. His mother, my daughter has cerebral palsy. It's difficult enough raising a child but when your physically challenged it's extremely hard. Now let's factor in things that just weren't "right"..delayed speech... wouldn't look you in the eye...night terrors.... tactical issues..no boundaries..constant motion...hitting..self mutilated.. .and the tantrums that escalated into severe violence. He would always scream to his mom/teacher get nanny, get nanny she knows.. After years of many doctors shrinks medicines behavior analysis the diagnosis is... Rapid cycling raging bipolar.. ADHD.. Autism. spectrum.. hearing impaired..speech delayed..ambulation issues and if that isn't enough severely emotionally and mentally delayed. When he was only 10 yrs old he had been Baker Acted 13 times. I went into court yelling at the judge and finally had him removed from his mother's home. I was terrified he'd wind up hurting her or himself more not on purpose he just doesn't understand. The police actually thought we were destroying her apartment until one day it happened in school. He lived in a small group home for several years was doing well, then one day he destroyed the entire home. Where he is now he has destroyed property there also. He's also snuck out and gone to a neighbor's home and broke their windows. Now they have alarms and cameras everywhere. He'll sit in the middle of the living room with a belt around his neck saying he's hanging himself when the police see that it's immediate Baker Act... doesn't matter if he doesn't comprehend.
Today I get a call he got out of the group home went to a neighbor's home and took a brick to the guys car! Police/ Baker Acted. The second he's non compliant he gets shot with psychotropic meds. It just seems unfair that somebody who doesn't have the mental capacity to understand he has a mental illness gets treated like this and there's no other way. This is what breaks my heart into a billion pieces each time. While I never laid a hand on him except to restrain during his rages
He would spit on me tell me I'm a f...bitch try to bite me and f*** you I hate you I'm gonna kill you. Finally it would stop he'd start crying, then ask "whys everything a pig mess" our word for broken mess.
When he was little I'd tell him if you don't listen I'll snatch you bald headed. That always scared him. So now I wait for the med call from the psych ward and we're back on the carousel of mental health.
My biggest fear, since he's 23 yrs old and 6'1" what if he gets or pretends he has a weapon and...... #Bipolar1Disorder #ADHD #Autism #mentally Challenged# Emotionally Delayed #DisruptiveImpulseControlAndConductDisorders #SpeechDisorders #AuditoryProcessingDisorder #HipDysplasia # mentally delayed

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Learning to live again now with severe disability suck! #Fibromyalgia #ChronicFatigueSyndrome #SensoryProcessingDisorder #SpeechDisorders #Mobilityissues

I am the sickest I have ever been and keep having to see professionals to keep my insurance benefits but both them and I are sick of reviewing the same concepts. I have tried it all, there is nothing new to offer except retrying the old.

I now spend over 90% of my time alone trying to cope because I am so limited by severe symptoms. Everyone in my life has to relearn pr take new roles to accommodate this change and it is frustrating.

Today I am angry about an apathetic medical system the is inflexible and significantly underestimates the brutality of this condition!

I am angry that my family hasn’t figured out that the medical outings in the last few days were hugely overwhelming and debilitating so much so I haven’t been able to eat in 24 hours. Part exhaustion, part nausea, part upset/frustration that has formed a pit in my stomach.

I tried to distract myself with art and then my supplies fell on the floor. I tried to pick them up but the nausea and discomfort and likely anxiety was too high so I though if you can’t beat it join it. So I cathartically threw a few more items on the floor to go with the ones I accidentally dropped. Then I decided a shower could work if I just focused on the shower and getting dressed. I have not showered for a few days as I have been too tired to do it and clean up after myself. So I did I showered and left my mess.

Not neat, not pretty, not my normal but Iaccomolished a shower and I am clean.

Not sure where I going to gather the energy and the emotional strength to clean up and eat but I will. Just for one day I decided to join my body in it’s disfunction rather than to fight it!

It’s got to get #CheckInWithMe better than this soon!

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