sensory integration

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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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Community Voices

Help through meltdowns

Hi is there any suggestions that can be offered for helping through a meltdown? My son has sensory integration disorder, autism, learning/ developmental and speech delays. He has multiple meltdowns a day some caused by not being understood some by noises from cars passing by outside. I got him noise reduction headphones they help sometimes but sometime they don't help out. He has a quiet space to calm down but his meltdowns are getting to the point where it's taking him sometimes hours to calm down. I give him space and let him come to me when he is calm because if anyone goes near him during the meltdown it will last longer. More and more things that did not bother him before are now bothering him. Am I doing anything wrong should I try anything? Please I jus want to help my son through his struggles. #Autism #SensoryIntegration #meltdownsupport thank u for taking time for reading this and for the support

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Community Voices

Any advice or help for helping son with #Autism #SensoryIntegration #sensoryprocessing #SuperMom

Hi I'm new here. I am a mom of two handsome boys and a stepmother to a boy and girl. Alittle about me is my youngest biological son is a smart talented and special 6 year old. He has sensory processing/integration disorder, a speech delay, developmental delay and is going through the process of seeing if he has autism as well. He is such a amazing boy who has so much energy love and compassion. He is extremely smart and grasps onto things very quickly. He is able to complete up to 200 piece puzzles without any assistance and loves doing anything educational or learning related. He is loved by anyone who comes into contact with him. He is sensitive to loud noises and can be easily over stimulated. He tends to get frustrated when he is not understood due to him not being able to produce most words or he will create his own words for stuff. For example he calls all my cats by his own names for them " mittens is mackey and max is puppup. Another example is he will call YouTube "book". He kind of made up his own language for stuff. When he has a meltdown anything and everything will set him off whether it be someone walking into same room ad him If someone talks or touches him etc. He has to be left alone so he can calm himself down and once he settles down he will comeback to playing as normal or to be with preferred person he is around. Usually is me. He has a extremely close bond with me and is very attached to me. Don't get me wrong he loves his dad but when it comes to anything he needs or loves cuddles if he gets hurt etc he's all about mom. He's like my little sidekick :)he loves to help out when I bake or cook loves school and loves to do anything hands on. Any advice to help me out that'll b great he is alot to handle especially when in middle of a meltdown wich happens often due to he is super sensitive to anything said or done near him. I love my son he's amazing wouldn't trade this experience for anything. I also have a 11year old with adhd but that's a different story. My 2 stepchildren are great helpers and are very supportive of this all. #Sensory processing disorder #SuperMom # autism #Never give up

Community Voices

World Voice Day post #WVD

<p>World Voice Day post <a class="tm-topic-link ugc-topic" title="WVD" href="/topic/wvd/" data-id="607a544206126400fa9b851b" data-name="WVD" aria-label="hashtag WVD">#WVD</a> </p>
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Community Voices

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)

Community Voices

Sensory swing saviour

<p>Sensory swing saviour</p>
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Community Voices

My daughter is in the process of being tested for Sensory Integration Disorder. In all I have learned about it, I am beginning to wonder if I have it.

I think I read somewhere that a possibility is that it's hereditary. Where would an adult get tested for this? My daughter is going through a children's hospital Occupational Therapy dept.

#SensoryIntegration #sensoryprocessing #SensoryIssues

Morgan Turpin

Parenting a Child With Dravet Syndrome

Morgan’s son. The last eight months have been nothing short of exhausting. In November of 2015, Dravet Syndrome pulled the rug out from under us, and we are still struggling to get back up. My sweet boy has gone from having one to two seizures a month, to now having 15 in a day some days. He has clusters of tonic clonic seizures every few days, and we never know how bad a particular day is going to be. I have seen his right side get progressively weaker, since that is the side he seizes hardest on. He has had seizures during sleep, in the pool, while eating, at the top of the stairs…pretty much every extremely dangerous scenario I could have imagined. He missed so much school this year, due to being constantly sick, or having multiple seizures in the morning while trying to get ready. We have tried medication adjustments, supplements, diet adjustments, cannabis, so far with no real relief from any of these measures. In the past eight months I have gained a perspective for how truly devastating this disorder can be. Now, instead of counting seizure freedom by the weeks, some days we count it by the hour. Thankfully, despite all of this, he’s still our Shayne. His language has drastically improved this past year, as well as his interactions with his baby sister. Despite all of the “bad days” and hospitalizations and all of the many many seizures he has had, he keeps smiling and persevering. He is hands down the strongest person I know. He inspires me, and I hope his story can inspire others as well. In honor of Dravet Awareness Day on June 23rd, I wanted to write about what Dravet means for our family. Dravet is a word I avoided for a long time. When we first got the results from Shayne’s genetic testing, I googled everything related to SCN1A mutations and came to the conclusion that Dravet was terrifying and the worst case scenario. We found out he has a nonsense mutation in SCN1A, that was detected by my very own work. When his doctor at the time assured us that clinically Shayne did not have Dravet, I felt so relieved. I pushed it out of my mind, and even felt defensive when I would tell people about his genetic mutation and they would say, “Oh, so he has Dravet, right?” It wasn’t until he was 2 years old and we saw our current epileptologist that he finally referred to him as having Dravet Syndrome. I immediately felt sick with worry after that appointment. It was as if something had changed, even though nothing had, just two simple words on a paper. But somehow those words implied a different outcome. They caused me to believe he was suddenly so much worse off. The worst part is that in my heart, I knew it all along. Those two words have caused me a lot of grief, but along the way I’ve also gained some understanding. It has taken me a long time to accept that a diagnosis is a good thing. It grants him access to services he needs to help him thrive, and it establishes that what he has is different than other seizure disorders. So what is Dravet? If you do a quick google search, you come up with some scary definitions. Most include the term “catastrophic.” As time goes on and more kids receive genetic testing, that definition is changing. Dravet itself is a spectrum, and unfortunately there is no real way to predict an individual’s outcome. No two cases of the disease are the same, so even finding another child with the exact same mutation as him would not give us much information (and so far we have not found another child with his same mutation). Dravet is a rare epilepsy syndrome, with a population frequency of about 1 in 22,000. I recently read an article that put that in the context of other genetic conditions: Down Syndrome occurs in about 1 in 800, cystic fibrosis (CF) is about 1 in 3,000. That means if you filled up Staples Center you would have about 25 people with Down Syndrome, six with CF, and maybe one with Dravet. He will have the condition his whole life, and it affects nearly every aspect of his life. Along with seizures that have multiple triggers and cannot be controlled with medication, he has issues with his autonomic nervous system (affecting his ability to regulate his internal body temperature), sensory integration issues, speech and language delay, behavior issues, and other learning difficulties. We have already seen aspects from each of those areas start to affect him, mostly within the last year. Dravet can also come with orthopedic issues, growth and nutrition problems, sleep difficulties, and chronic infections — that list we have managed to (somewhat) avoid so far. His seizures are not benign, and cognitive and physical decline is correlated with seizure control. He requires 24/7 supervision, due to the danger having frequent and uncontrolled seizures puts him in while performing simple every day tasks (like eating). He also has an increased risk of sudden unexplained death in epilepsy (SUDEP) due to the intractable nature of his seizures. There it is. It’s a long ugly list, but it’s reality. So now that all the scary stuff is out of the way, here’s the good stuff: He is funny. And smart. And handsome. And so sweet. And affectionate. And social. He has an incredible memory; you cannot promise him something that you don’t intend on following through with. He will remember and remind you until it happens. He loves music and dancing and going out to restaurants or to the movies. We call him FOMO because he truly has a fear of missing out. He loves his family, especially his baby sister. Although “Master Shayne” can be quite bossy at times, he also has an infectious smile and laughter. We don’t know what his future looks like. We don’t know how much independence he will have, or how much help he will need one day. All we can do is be happy with how he is today. The other day he was running around the living room with a pink fedora on, humming very loudly to the music in his head. I stood there watching him and I had a moment of clarity. Normally I would be stressed out that he is running around being loud, but this time I just watched him in awe. This time I was grateful that he has the ability to run around the living room. I was thankful to see him so happy, just being a kid. I spend so much time thinking about scary outcomes and worrying what life is going to look like for him later on down the road, that I forget to savor these moments. I forget that each day (or even each hour) without a seizure is precious, and cause for celebration! Each new word or phrase he learns is something to be excited about. Dravet has given us a serious dose of perspective. It has showed us that the “worst case scenario” does happen sometimes, but you just have to deal with it. I’ve had people tell me, “You are so strong. I don’t know how you do it.” Believe me when I say I’m no different than anyone else. I’m just a mama who loves her son, and I do what I have to do to take care of him. And I want what all moms want — to see her child happy, and for him to feel loved and cared for. Yes, I have had to think about things that most parents don’t have to think about. Yes, we spend so much time working on basic skills that often come easily to other kids. Yes, I have faced a time where I thought I could lose him. I have watched my husband perform CPR on him and I have suctioned food out of his mouth so he wouldn’t choke or aspirate. But at the end of the day, I’m just a mom who is doing what I have to do to ensure my son has the best life possible. Follow this journey on Our Journey With Epilepsy The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.