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Ask HN: My child was diagnosed with sensory processing disorder. What to do?

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Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#21
I'm not THAT type of neurodivergent, but for those who do have meltdowns in loud and crowded situations (this does not necessarily ever go away), they usually have something to help regulate their hearing so that they're not audibly overwhelmed.

You might try noise cancelling headphones for one. Doesn't even matter that they've got music playing in them, just that they're on to dull the cacophony of crowded spaces.

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#22
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.

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#25

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 c…

> could only see a about 5-feet forward

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

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#26

My youngest is like that. Severe ADHD. Opposition defiance disorder. She is amazing and exhausting. We do a mix of give where we can. Foods that she can tolerate, clothing that doesn’t bother her. But also strict on expectations. She follows directions or gets a time out. We had many horrible times trying to give her a 3 minute timeout. 90 minutes, 3 adults drenched in sweat. She would run out of timeout, we would br…

You just described my eldest child, only daughter. We just hit the teens and things are only escalating. She's vindictive and destructive, particularly when she can exercise her resentment towards her mother.

Still trying to figure out _something_ that works, but every failed attempt is both taxing and disheartening. I wish there was more awareness regarding ODD.

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#27
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

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#28
My son hasn't been formally diagnosed but has/had some similar issues (he hates fireworks/loud noises, picky eater (not great given that he's a type 1 diabetic)), and also used to have trouble falling asleep on his own. Everyone and every situation is different but I think it's important that you don't stop exposing him to these triggers - introduce them slowly and be persistent. Some people take longer to become comfortable (emotionally) with something that's new/"scary"/unfamiliar with. My son (11 now) still dislikes fireworks, but he no longer is terrified of them. He tolerates them (he used to cry on the 4th of July, etc.) Despite not enjoying loud sounds he loves to hear his favorite NHL hockey team's goal horn/siren and all the noise that comes with attending a sporting event. Six years ago we took him to a soccer game featuring his favorite team at the time (Real Madrid) and while there were fireworks at the beginning and the end of the match he tolerated them because he got to see some of his favorite players.

We were at the beach last week and he was afraid of going into the ocean. I didn't push him to go further than he was comfortable with (compared to our older daughter who is fearless). I encouraged him to take a step forward with me and just stand there. We were out there for probably more than 45 minutes and by the end he was waist deep and laughing. There were a few hiccups (a few waves came in that caused him to drink some water) that made him retreat some, but he got over it.

Picky eater - this was me as a kid and my parents did me a disservice my not making me try foods "I didn't like" (even though I'd never really tried many of them). We make him try foods he claims not to like and gradually his tastes are changing (more slowly than we'd probably like, but that's ok.)

Falling asleep has been an ongoing issue that ebbs and flows. It ultimately comes down for him to learn to quiet his mind and body. Occasionally he'll have something irrational that he's afraid of. We'll have a chat, I may sit with him while he falls asleep and over time he realizes that he's safe/fine/etc.

My neighbor had a similar situation with their teenage autistic nephew who came to live with them. Rather than tip-toe around his fear of loud sounds, my neighbor forced him to learn to cope with them. He made his nephew help him hold some lumber that needed to be cut with a chop saw (they're loud if you're not familiar). At first he cringed and didn't do what he was supposed to. He told him " I know you're scared, but if you don't do this I can get hurt. I know you don't want me to get hurt, so I need you to do this." The next time he did job and they kept cutting the lumber until he figured out how to cope with the noise. His nephew is now an adult in his 20s and is the lead singer in a heavy metal band.

In the end, be patient, persistent and don't stop exposing your child to these things.

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#29
post #5

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…

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

Re: Ask HN: My child was diagnosed with sensory processing disorder. What to do?

#30
My daughter had the same diagnosis at 24 months. We caught on to something at 18 months when we saw all she was doing was either running back and forth across the room (making the same verbal sound), or pressing a light up toy's button again and again for an hour, without any other interest.

We ended up finding a behavioral specialist who worked with her on a weekly basis. From age 2 to 3, and through some of the pandemic. The day she said "I don't think your daughter needs me anymore" was one of the happiest days of our lives. I still say "Thank God for " every time the topic comes up with my wife, or friends.

She challenged her, got her to come out of her shell and talk to her, and my daughter is about to start kindergarten this year. She still has verbal tics, and loves to stim by running back and forth, but she's also interacting with all her friends, loves to play imaginary games with herself and her brother, and if you didn't know her past, you wouldn't ever assume it about her.

So, yeah, find someone to help. It's worth it.

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