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.
53 comments
[ 4.4 ms ] story [ 103 ms ] threadI 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.
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
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
For instance my daughter does not show any autistic symptoms, but is a very picky eater and, what presents the most difficulty for us, has clothing sensitivity - no hair clips, bands, or pony tails, only very specific baggy oversized pieces of clothing, no elastic bands wider than an inch on pants, only specific socks, etc. Its a pain and we can never get it quite right. But she is 14 now and it’s all quite “normal” to us now and we just deal with it. You find ways to cope and handle it so it becomes routine and you don’t even notice it anymore.
Also asthma is a pretty common thing to go along with this, and allergies. She is even allergic to cold - gets hives if ambient temp is low. You should check her for allergies not to end up in the hospital with something you weren’t aware of.
There are online forums dedicated to this sort of thing, hn is not a common place to go for advice.
If you have to ask if you should reduce the screen time of your 3 year old, I figure the answer is probably yes. For their own sake at least.
On a flip side - some children with autism that I know are greatly calmed by playing mobile and tablet games, and find books/games/tv/films uninteresting/confusing - so playing a video game is their release - limiting it too much would be negative in my opinion - as they aren't able to engage in a lot else at times.
As a scientist with no kid in the game whose opinion carries no weight though, I would concur with both you and Dr. Phil on the matter of telephones vs threenagers.
https://out-of-sync-child.com/
Unfortunately she was most open about this in a web forum which is now defunct. But various blogs may be of interest:
Her live journal (entries tagged autism) https://e-moon60.livejournal.com/tag/autism
The blog on the (fiction) book she wrote from the PoV of a character with autism: http://www.speedofdark-thebook.com/blog/?cat=46
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.
Does this mean optical nearsightedness, or a neural thing limiting vision by distance?
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 bring her back.
However the better we did about staying on top it, the better she learned self control. She’s older now, still a pistol, but is generally very well behaved.
We watch her closely for migraines, as that runs in the family and is a cause of sensory issues for a lot of us.
We only use dye and fragrance free laundry soap which helps a lot. No scented anything in the house.
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.
It's been helpful and was initially counterintuitive. I think the author has one for teens as well.
This may not apply to your situation but the parents have to be on the same page as each other and have a mutually respectful parenting style otherwise things will appear unstable and the kid will exploit that loophole.
Also for all behavioral problems, the only person you can change or control is yourself.
And remember that every behavior is a form of communication of some underlying need.
They absolutely love it, and it’s been a big positive in many ways for them. Our lazy unmotivated child works hard now and talks constantly about college, getting good grades etc. basically, she’s doesn’t want to disappoint the team or her friends, so she’s learned to push herself hard. Plus they are so busy they don’t have time to get into trouble.
We had them in horses at one point. Person selling us on it had a good point that keeping them busy and active was cheaper than teen pregnancy or years of therapy.
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.
My daughter had similar issues and ended up being diagnosed with PANS and later with autism. She didn’t have the typical autism characteristics, but we learned it’s often expressed differently in girls.
Long story short, she’s a high achiever and is studying to become an RN. Hang in there!
Try cooking down fruit for nutrient dense calories.
Have you tried the tastiest, highest-quality foods you can figure out? [tasty produce, whole starch sources from good soil, decent cheese (Cabot aged cheddar or better), grassfed ideally local dairy/beef, wild fish, flavorful spices, etc.]
Make sure whatever else your kid is well rested, hydrated, and has sufficient blood sugar and nutrient levels.
Spend as much money on food and housekeeping and quiet, plentiful sleep for a few weeks as you would on doctors.
Pay attention to your kid. If there are unnatural sounds or smells that seem uniquely bad for her, don't expose her to those things...
Your kid's body reflects their needs. Be kind.
Sleep is extra extra important. Excellent mattress, mattress cover, blanket/comforter, pillow, sheets--cleaned regularly.
If her skin is sensitive and she sweats at night, sweat may make salt crystals and she'd be better off with seets changed every day...
Be kind. Be attentive. Be loving.
My son (Ender) has it far worse than my daughter, and the biggest suggestion I offer is to disregard the opinions of others when you find methods to deal with meltdowns. Until we found a medication that worked for Ender, the meltdowns were catastrophic and the loss of control was overwhelming. Eventually I found that holding him tight near me eventually calmed him down. My arms wrapped around him like a great bear hug, pinning arms to the side so he cannot lash out and hurt others or break things (we lost two TVs before I figured this out). I'd even have to wrap my legs around his to prevent kicking. He would calm down after a time, and usually end up falling asleep and taking a short nap.
We purchased a nice weighted blanket and that now plays this role of comfort during his times of need. Finding Nemo was magical as well when he was beginning to melt down. The relatively quiet scenes would mesmerize him and eventually the meltdown would pass. We'd also use his favorite food as a motivation to get through particularly arduous tasks, like when he started kindergarten.
The other side of this coin is to not feel guilt or shame when meltdowns occur in public. His brain is receiving an overwhelming barrage of external stimuli and he didn't know yet how best to manage this stress and anxiety. The children will need to be around others and in stressful environments, so public meltdown is inevitable. Whenever it happens, I pick him up and remove him from the situation temporarily. You'll get side eye or accusatory glances from others who simply do not understand, but you're doing your best meeting your child's needs. Apply the calming methodologies that work for your child (I will head to the car and snuggle my son until the storm has passed), then praise them for calming down and tell them they will be going back to that environment, but it's okay. Over time, both you and your child will improve -- meltdowns will become more rare, and coping will become easier.
Finally, look into occupational therapy. Ender went for a little over a year and has learned multiple coping mechanisms we use to this day (like deep breathing...the mantra for him is "smell the flowers, blow out the candles).
I'm in a very fortunate situation for work, where my employer is incredibly understanding of my domestic situations. I have incredibly flexible availability when needed and they trust me to accomplish what is needed. I'd talk to the potential employer and describe the situation before outright turning down the offer. See if they empathize and perhaps something can be worked out.
I am far from an expert in any of this, but I've learned a lot about my situation in the past 4 years. Please do not hesitate to ask any questions if you desire.
Best of luck, and remember two things: - This is no one's fault, least of all your's or the child's. - It gets better. It will never go away, but it gets better.
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.
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.
I would stay a manager, not sure why it would be much different as an IC.
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
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 "<name> 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.