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Posted by u/nus07 2 years ago
Ask HN: My child was diagnosed with sensory processing disorder. What to do?
My 3 year old kid was diagnosed with sensory processing disorder. She has trouble with transitions, has meltdowns and gets overwhelmed in public places like stores. Grabs and wants to cling on us and needs constant attention. Also very picky eater and has trouble falling asleep.

What can I do ? Should I try to minimize clutter and reduce screen time? Has anyone experienced it themselves or have anyone close they dealt with? What are some workarounds to make parenting easier and keeping my sanity while working a high pressure job? I feel very tired and can barely get any work done ( work from home) .

I recently received a coveted job offer as an engineering manager but I am so exhausted that I am planning to turn it down and stay an IC to concentrate helping my kid.

1ain0n_d3v · 2 years ago
Greetings,

I am not an expert or parent but I do have sensory processing disorder (although I also have autism and ADHD and it's hard to differentiate between them all). The first thing I would like to tell you is that it CAN and likely will get better as she gets older and you can better explain to her what is happening and communicate more clearly to navigate her specific struggles.

At this age, it's probably going to continue to be rough. Yes, I do think it is a good idea to "minimize clutter" and promote a sensory-friendly environment. That said, she will also need some exposure to things that are probably going to be uncomfortable to her! There are typically warning signs that someone is approaching a meltdown, so I recommend doing your best to identify them and help her regulate since she's still too young to self-regulate effectively.

Unfortunately I don't have a ton of practical advice because there's not really a one-size-fits-all solution here. Be understanding and patient. My parents very much were not and it exacerbated my struggles into adulthood. Know that she will appreciate your effort and will appreciate experiencing new things that might be uncomfortable at first, if you work with her instead of trying to force things onto her.

nus07 · 2 years ago
OP- here , I am very grateful for your and everyone’s replies. Lots of things I can read and try to make it better. I hope this helps anyone else in a similar situation. Thank you.
GlenTheMachine · 2 years ago
There are no hard and fast rules. Every such child is unique.

We got through by being as flexible as possible. We had a very small number of hard and fast rules, nearly all of which were to try to ensure everyone lived and stayed sane, and which we worked out during periods when everyone was calm.

For instance, I would take my daughter and drive around with her for a couple of hours on Sunday afternoon so my wife could sleep. I did that every Sunday for about two years. My wife and I had a work schedule that we mostly stuck to. We traded off housework. We traded off who handled the night terrors so at least one of us was rested the next day.

But in general, just being rigid only caused things to get worse. So we weren't. We slept when we could, ate when and what we could, and focused on making it to tomorrow.

We also weren't afraid to experiment - a little - with medication. Daughter went on meds to help calm the meltdowns and night terrors. Wife went on antidepressants. Yes, having a toddler on psychiatric meds is problematic, but so is have three 2-hour-long night terrors every night for a year.

Daughter is now a 23 year old young women who is amazing, a joy to be around, kind and fierce at the same time, with a solid work ethic and a life plan. She's a bit behind academically, but as we keep telling her, this isn't a race. She wants to do green architecture.

anon4692436 · 2 years ago
Went through a very similar situation (kid with sensory issues as you describe), which was a very hard time for our family any myself. Also every doctor had a very different theory what was wrong.

What we did in the beginning is establish a plan for getting sleep in shifts. One parent is responsible for the first part of the night, the other for the second part. For a job that requires a lot of concentration, getting little sleep is really hard. Also buy noise canceling headphones / ear protection for yourself and your kid.

Regarding the sensory issues, this got better over time. Not in the way that the sensory issues itself disappeared, but everyone learned to deal with that better, most of all the kid. At some point we also became more accepting with the issues and didn't try to work against them. My kid would only eat 2%-5% of food offered. But she can have her pick and essentially always picks the same foods. Similar with clothes (same sensory issue, it seems. My take it is is actually mixed consistency of materials that is unacceptable). Working against the issues has not proven worth it - in the opposite, I think it's better to be accepting as the child cannot really help itself in this regard.

The sleep issues sorted itself out over time, but that took some years and took quite a heavy toll, unfortunately. Nothing we tried changed the situation, the kid just outgrew the problem at some point.

jorgeleo · 2 years ago
I have the disorder and one of my kids have the disorder too. We both are in the autism scale (Asperger's)

As a kid, until 8 or 9 years old, my birthday parties with my friends (kids too) running around and screaming will push me to withdraw to my room and have a meltdown. I remember this stressing my parents because they wanted me to form social bonds, and in the 70s there was no vocabulary to describe what was happening to me. But this help me understand what was happening when I saw my kid doing the same.

The good news is that as we grow up we create coping mechanisms, so this is transitory and most likely will get better. Respecting the fact of having a quiet place to be helps. The clinging is the looking for safety, always welcome it or she will feel rejected at a vulnerable moment.

Which leads me to a warning. Trying to process the sensory overload put us in an emotionally vulnerable position, which in school leads to been a bully victim. Even in high school there was a guy that scream around me so I would contract and he could beat me. Same thing with my son who end up shovel into a locker. We had to involve the police on this one. Things get better around college when bigger responsibilities push away bullies.

Identify something that she likes to do and bring her peace, then provide that when she is overloaded so she can have tools to cope

loganwedwards · 2 years ago
Same boat here. When my 2nd child was around 5 was diagnosed with SPD (desires heavy input, sometimes auditory stimming) and autism. This is a journey and would recommend doing some reading. I can't recommend "The Power of Neurodiversity" by Armstrong enough to understand how every individual's mind works.

Each area (picky eating, social transitions) requires patience for incremental improvements. Also note that many of our social norms (at least in the USA) are not exactly fair to those neurodiverse individuals. Sometimes, self-awareness (when the child is older) will help as well.

Good luck and don't forget to love your child for who they are.

SEJeff · 2 years ago
Anxiety / meltdowns: We got some over the ear passive noise cancelling headphones for my daughter (who is moderately autistic and what you wrote would be a perfect description of her as well). They're lifesavers in public places like restaurants and stores. We have her on a pretty regimented schedule to try to minimize unexpected transitions. This helps her focus and really helps her sleep. What kind of therapists is she working with? Our daughter is diagnosed with moderate ASD and has therapy for ABA, Speech, and OT. She's 4.5 years old. We found a "sensory room" in the house is an incredible place for her to self sooth and calm down.

Sleeping: not a ton of good options. We frequently are up with her at odd hours. I'll bring her upstairs and we will watch Cocomelon at 3am for 30-45 minutes. I'll spend time sitting and reading with her as well. We often try to "wear her out" before bed by just playing a lot for a few hours before or after dinner. The hatch[1] was recommended by her ABA therapist, but we've not yet purchased it.

[1] https://www.hatch.co/rest-second-gen

neurotech1 · 2 years ago
Some friends who work with kids with autism use noise cancelling headphones a lot.

They also have timelines and schedules. For some kids they literally specify a "T minus" timeline.

Some therapists and parents have found it helpful to have standard routines (procedures) and checklists [1], as a few were Navy flight surgeons and aviators in their other careers. The kids get used to a standardized, but not overly rigid way.

[1] NATOPS (Naval Air Training and Operating Procedures Standardization) https://en.wikipedia.org/wiki/NATOPS

klyrs · 2 years ago
As a mom of a kid with SPD, yes reduce that screen time. We share custody 50/50, and when kiddo returns from the house with unlimited screen time, he is a monster and it can take several days for him to regain the ability to emotionally regulate.

Screen time is free dopamine. It rewards withdrawal and inactivity. For a kid with SPD, just existing in the world is painful due to all of the stimuli. Add "stop hitting people" or whatever and you're saying "ignore the incoming pain and stop redirecting that pain elsewhere." And that's really hard, and kids can do it but it takes effort with very little reward. But then you add the TV, the brain's baseline is "I can get huge rewards for zero effort," and regulation becomes a million times harder.

houseatrielah · 2 years ago
I think my nephew has this. The basic idea is they have low sensory perception and are not sufficiently copying adults' behavior, specifically communication.

Diet and therapy are working. Certain foods made him worse, specifically gluten. On day-1 the therapist determined his range of perception: he had no peripheral vision and could only see a about 5-feet forward also he had auditory perception issues.

Therapy is conducted within his perceivable range (which is increasing) and its objective is to get him to copy the therapist's behavior. The professions involved are occupational therapists and speech-language pathologists.

mwint · 2 years ago
> could only see a about 5-feet forward

Does this mean optical nearsightedness, or a neural thing limiting vision by distance?

houseatrielah · 2 years ago
Neural