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+--- Thread: Desperate for help and advice (/thread-1338.html)
Desperate for help and advice - Achelois - 06-16-2014
I'm an adult living with Aspergers and mother to a daughter also on the spectrum. It's only in the past month or so I've come to realise that what makes our lives so difficult is SPD. I've unwittingly created the sort of stressful home life I escaped as a teen - my father and brother have Aspergers and clashed constantly.
My eldest, who is the afflicted child, is 10 and home schooled as we moved towns and her new school was not providing for her. As you can imagine, moving homes and towns was immensely stressful for all of us. To make matters worse, we've had two more children in the last two years and I now have a two year old and a 9 month old.
My issues have been present since childhood and are around noise, smell and textural/touch oversensitivity. I used to chew my clothes and plastic farm animals, still chew my fingers and nails and could never wear wool. My issues with food seem to have changed and instead of being fussy and texture-sensitive and getting upset about food mixing, I've moved towards sensory-seeking and loving the foods I used to hate, eating all kinds of smelly, tasty and crunchy things.
The other issues persist, though. I get incredibly over-touched and my hearing especially gets overwhelmed very, very quickly, especially if other triggers like smell and touch are involved. I can hear high pitched whines from the CRT television that no one else can hear. The sound of the babies' crying makes me shut down completely and I end up taking myself away from the rest of the family and it takes me hours of alone time to recover, and often my sleep suffers. When I'm shut down, I can't even respond effectively to resolve the things that are causing the problem. To stop the babies from crying I hold and breastfeed them, but then I end up overtouched and in pain. I babywear, but I can't accomplish a back carry because I lack the coordination and motor skills. So nothing gets done, all day, and this feeds my overwhelm and stress and despair.
To recap:
- I am oversensitive to noise, touch and smell
- I have two small breastfed (and tongue tied) babies
- I have an older child who is ASD and SPD who I have no support for who yells at the other two
- Babies mean noise and smell and touch that I can't escape! Did I emphasise that enough?
All the support I've seen around SPD revolves around eliminating the source of the problem or minimising it. I really don't see how we can do this because:
- We're poor and can't afford childcare
- I am stuck at home with the children 24/7 with no escape
- I can't afford OT or other forms of therapy that could help
I want to help my daughter but I'm afraid that I can't even help myself. I'm not the sort of person and mother and wife I want to be. I've come close to ending my life a few times because of this.
Are we screwed? Is there a way out for people who are wretched from SPD and in stressful, triggering situations where other people depend on them?
I need help, real help and practical advice. For example, my daughter wouldn't wear socks and we clashed endlessly about it because it meant that her sneakers stunk. I finally worked out that if she just turned them inside out the seams would stop rubbing her and she would wear them every time. If I only had simple fixes like this for all our problems...things that have helped other people...our lives could be so much better.
Please, if you have any hints or tips for issues like these, anything quick, easy, free - share them with me. You could save my life.
RE: Desperate for help and advice - HannahAnnieRae - 12-06-2014
Hi!
I'm fairly new to the idea of SPD, and the more I've read the more I've realized that my mother and I have it. But I've learned to cope on my own and I'd be willing to try to help. Since I'm 17, I don't know much about dealing with SPD as a mother but I can ask mine .
The seam of the sock is all too familiar with me. I would always just move it so the seam was on top of my toes.
Get clothes a size or half a size bigger than she might need. That will help if she's complaining about that.
If I knew more of what you or her were having problems with I might be able to help more.
RE: Desperate for help and advice - lostNtransition - 04-12-2015
I don't have any practical advice Im sorry, but reading this has sent a flood of emotions through me. I am in the exact spot! I have SPD and they are thinking about testing me for adult Autism they are talking Aspergers I think. My son is 4 and also Autistic with SPD. I have a 6month daughter. Noise and touch are my huge triggers. When you described how the crying makes you feel I broke down in tears. Thats exactly how I feel. I feel like a really shitty mom for it. I cant afford child care, I here 24/7 largely on my own. I have no one to really help. I obviously cant "get rid" of my triggers I quite love my kids lol. Id like to keep em lol. Its nice to see Im not the only person out their looking at the ceiling screaming to no one "please someone help me"
RE: Desperate for help and advice - Tuttleturtle - 04-15-2015
These are very general ideas, but are hopefully useful. Because I do not know your specific challenges, I cannot help with your specific challenges. What I can do is try to help with HOW YOU figure out what to do.
Break it down into pieces.
Figure out what are things that you need to avoid.
Figure out things you crave.
Figure out other sensory oddities you have.
Avoidance things.
-Yes, not everything can be avoided, you can do things to avoid, you can minimize. Some of this is using tools. Some of this is using change of behavior.
-For example, noise, wear earplugs! Wear earmuffs/ear defenders! Wear noise canceling headphones! There's nothing wrong with needing to wear earplugs at home, or in public. Wear them around. Wear what hearing protection you need.
Craving things.
-Getting things you crave is necessary, not a luxury. How you get it is the question. You do not need the most expensive food that you might think of and want, but if you want it because of the texture in your mouth, get that texture.
-Even when you don't know your body craves things, because you don't have cravings like food, there are things your body craves. Watch your actions, and figure out what they are. A common one is deep pressure, and propioceptive input. I automatically wrap my body up, and wrap my arms around my legs instead of sitting normally in a chair. I didn't recognized that this could be sensory-related, it was just what was comfortable. Eventually I learned that these are things my body craves and could get more of these inputs. Now I have a weighted blanket, which is a hugely regulating device, and use compression shirts, which again, help regulate me.
Combining these two
-If you are needing to do something hard, give yourself good input immediately before or during. The more good input you have, the easier it is to have the bad input too. Removing as much other bad input as possible during the hard time is also a good idea.
-This is done both in general - as much good input, remove as much bad input, bodies function better with good input in general so it is harder to hit your breaking point
-And in specific senses - flood as much good input into the sense that is having to deal with the bad input
Figuring out more powerful ways to avoid, more powerful ways to give yourself input, what your actually needing to avoid and get, and where you are giving yourself inputs you shouldn't and don't realize it, are where a lot of things start.
The other thing you might need to do is figure out what you have for sensory oddities that aren't craving, needing more input, needing less input.
You might have these, you might not, some people do, others don't. I have a lot, I know a bunch of people with SPD who have none.
IF you have these, then what you need to do is start sorting out what is the question you need to ask yourself about how to function. Rather than looking at everything and getting overwhelmed thinking about it, what is the specific thing you are looking at, and what is the question you are really seeing. Then, you can find ways of helping your body process it better, by teaching yourself, or by adaptively coping with tools. I use apps on my phone to help with the fact I can't always trust my senses. I have taught myself how to navigate with any of a variety of senses, rather than using vision like humans expect, because my senses are unreliable. This took figuring out what the questions were - not "my senses are unreliable and sometimes I get good data and sometimes I don't", but "How do I get safely around, when that is the case?" Because once I asked that, I could answer it.