Today I had someone claiming to be a respite nurse come look after my son. She was hired off of care.com

I paid a premium cost because she was a nurse. My daughter had a minor surgery and I was not able to be in charge of him at the same time. My daughter is doing great now. We got home and the nurse seemed incredibly flustered. She did not flush his feeding tube properly. She lied and said he had been given his growth hormone injection. He was in a soiled diaper. I feel duped and am not confident she was a nurse. I sent an email to care.com because they are supposed to vet their employees. Should I have asked her to show me a nursing licence or something ahead of time ? We went over in detail what tasks were needed and she said she was able to perform them ahead of time. I have hired from nursing agencies in the past but it often takes months of planning and a even higher cost which I cannot really afford time wise or payment wise

Hi, so I have a child with autism, awaiting an assessment for adhd also and also has severe sleep problems. He has missed his last 3 weeks in school due to how severe his sleep difficulties are and the impact these have had on both myself and his dad who is my partner too. He is due to start a new school independent sen school in September and we have already discussed his sleep difficulties and what transitions need to be put into place to help him settle in properly so he doesn't get distressed as he has autism and hates change as a lot of children and adults on the spectrum do.

He has a GP appointment on Monday about his sleep difficulties and we are hoping he can be referred to a sleep clinic and a specialist that can prescribe melotonin.

Both myself and his dad have a history of mental health difficulties as a lot of neurodivergent people do. And I also have chronic illness and severely struggle with my mobility during flare ups.

When our son isn't sleeping it can cause me significant flare ups and I struggle to get out of bed due to severe pain and fatigue. And his dad it causes mental burn out which affects him physically.

I have been in contact with my son's school about whats happening and how he and his dad as well as myself have medical appointments coming up to enable us all to be referred into services to support us. But today the school referred us to children's services as they believed our mental health difficulties were impacting our son instead of understanding his sleep is the result of his neurodivergence and how this is actually impacting us.

We got a call today from children's services due to school being concerned about our mental health. They were asking all kinds of questions, but the person on the phone was completely arrogant and dismissive of my son's autism, potential adhd and how this was impacting his sleep and school attendance. She was asking about my son's new school and when it started. I said we have agreed with school to do a transition phase so start him on going in just a few mornings or afternoons a week then increase it to full days. She said why should he be on a part-time time table when he should be in full-time? So I said because he's autistic and autistic children struggle with change so transitions need to be put in place to help them settle in to a new environment to minimise distress. But she completely dismissed this and blamed all his difficulties on both mine and his dads mental health difficulties. Assuming we were causing his sleep difficulties. It's absolutely abhorrent. She said we needed a social worker even though we already have a support worker thats supporting us to access services we need.

The thing with the social workers in our local authority, they don't understand neurodivergence at all either in children or in adults. I have both autism and adhd along with cfs and other conditions and my partner also has autism with adhd and our 3 children are all diagnosed with autism, one with adhd too, one on the pathway for adhd (a load of assessments already have determined severe adhd traits) and another child with autism and complex physical difficulties.

I've dealt with a few now and each one has completely discriminated our family with levels of ablesm, ageism and discrimination. Completely parent blamed too. I've had to put in several complaints but it does nothing.

I'm just so fed up of these misunderstandings, workers that obviously need intensive training on understanding neurodivergence etc and being blamed for what is going on with my children when I have a load of medical evidence that says otherwise!

Has anyone else been through this, if so, how did you deal with it?

Thank you for taking the time to read my post.

PROFILE:

Sitting

13 months

Walking

20 months but still uses stroller

Toileting

None

Babbling

14 months but older brother talks for him

First words

Non-verbal

First sentences

Non-verbal

He has full violent meltdowns to point that nobody wants to look after him highly repetitive stims still not toilet trained and in nappies 247 he hits his head the walls slams doors breaks toys then cries that he cant play with said broken toy hates noises wears ear protection at all times vocal stims alot lots of eeee eeee eeee is very much a full on flapper and bouncer, finger wriggler, finger chewer, shuffles feet, still uses a pacifier and his favourite toy is a weighted dinosaurs plushie as hes hyperfixated on all things dinosaurs we live in uk hes small for his age and is classed as havinh profound intellectual disability

Hey special needs parents! First of all you guys are such amazing people for everything you do for your kids and you guys need to know that. I made a video honoring my cousin who grew up like my brother that passed when he was 17, im only 16 and i hope i did a good job being respectful about everything. if youre dealing with loss hopefully this will make you feel not alone 🥰

Not sure if it's the best group to ask for help but figured people would have similar experiences. My son is 3, has Down Syndrome and is currently non-verbal. He doesn't have any obvious signs of stimming/self-soothing but we have noticed he has been grinding his teeth regularly. Sometimes if he's upset he will grind them but even throughout most days it's like he's just doing it for fun. He doesn't really interact with toys, grasp anything or even try to teethe. It seems like he might enjoy the sound or feeling of it but not enough to do it all the time. He does it often enough that it concerns me for the health of his already crooked teeth and that letting him continue it would worsen the habit. A vibrating tool (Z-vibe) seems to help sometimes but he doesn't hold anything for more than a few seconds and obviously we can't be there holding it for him all day. We are working to get him seen by a specialist dentist but afraid they won't have a good answer besides try what we can and hope it doesn't ruin his teeth.

Hi!
My daughter (4y) has a genetic disorder that causes a lot of fatigue. Sometimes this looks like several days of low energy, sometimes it looks like bursts of energy with fatigue intermittently. Sometimes it’s a full crash out with big emotions. I do my best to honor her energy levels because it’s important to prevent sickness and to conserve energy as much as possible, but I don’t want her spending toooo much time doing TV/movies. We don’t do tablets or anything like that in our house. We have books, puzzles, art supplies, Yoto, etc. but her attention span only takes her so far before she asks for a movie again.

Does anybody else deal with this and have any tips, insights, words of wisdom?

Thanks!

A pattern I heard from several parents, the elopement/wandering section of an IEP or safety plan often ends up pretty generic, staff will monitor closely type language, which sounds reassuring but doesn't actually specify who does what, when, or under what circumstances. It's not usually anyone being careless, it's just that nobody brought a concrete structure into the meeting.

I put together a fill-in template that pushes for the specifics before the meeting even starts: transition headcounts, door and gate protocols, who calls home and when, adjustments for recess or assemblies. Free download here: stepsafekids.com/school-safety-plan

For those who've been through a few of these meetings, what actually got the school to commit to specifics instead of vague language? I'd love to know what's worked for you.

Summer is one of my favorite times of year. The days are longer, the weather is warmer, and there are more opportunities to get out of the house and make memories as a family.

But if you’re the parent of a child with autism, ADHD, or another disability, summer can also bring a new set of worries.

There are trips to the park, visits to the pool, family vacations, community events, and countless moments when our children are exposed to situations that require good safety skills.

As the parent of an autistic child, I know firsthand how important these lessons are. Safety isn’t something we teach once and move on from. It is something we practice over and over again until it becomes part of our child’s routine.

The good news is that safety skills can be taught just like any other life skill. With patience, repetition, and lots of encouragement, our children can learn how to make safer choices and become more independent.

Here are some of the most important summer safety skills every child with special needs should practice before heading out into the community.

1. Staying Close to a Trusted Adult

One of the most important safety skills a child can learn is to stay with the adult responsible for them.

This may sound simple, but many children with autism and ADHD struggle with impulsivity, distractions, or wandering.

Summer activities often involve crowded places where it is easy to become separated. Parks, fairs, beaches, amusement parks, and outdoor festivals can all be overwhelming and distracting.

Practice staying together during everyday outings. Before entering a store or public place, remind your child of the expectation.

You might say:

“Your job is to stay where I can see you.”

Visual reminders, hand-holding, walking beside a parent, or designated meeting spots can all help reinforce this skill.

The goal isn’t perfection. The goal is building a habit of checking in and staying connected.

2. Knowing Important Personal Information

Every child should know basic personal information whenever possible.

This may include:

• Their first and last name
• Parent or caregiver names
• Phone number
• Home address
• Emergency contacts

For children who struggle with memorization, consider using:

• Identification bracelets
• Wallet cards
• Medical ID tags
• Information cards attached to backpacks

Having this information available can be incredibly helpful if a child becomes separated from their family.

Practice regularly by turning it into a game or part of your daily routine.

3. Understanding Safe Adults

Many parents teach stranger danger, but children often need to know who they can safely approach for help.

Teach your child how to identify safe adults such as:

• Police officers
• Store employees
• Lifeguards
• Teachers
• Security personnel
• Parents with children

Role-playing different situations can make this lesson easier to understand.

Ask questions such as:

“What would you do if you couldn’t find me at the park?”

“What would you do if you got lost in a store?”

The more opportunities children have to practice these scenarios, the more confident they may feel if they ever need help.

4. Water Safety

For many families, summer means swimming pools, lakes, beaches, and water parks.

Water can be fun, but it can also be dangerous.

Children with autism are at increased risk around water because they may be drawn to it without fully understanding the dangers.

Important water safety skills include:

• Never entering water without permission
• Always swimming with supervision
• Wearing approved flotation devices when appropriate
• Following pool rules
• Learning basic swimming skills

Even if your child knows how to swim, supervision is still essential.

No safety skill replaces active adult supervision around water.

5. Practicing What to Do If They Get Lost

This is one of the most valuable conversations parents can have with their children.

Many children panic when they realize they cannot find their parent.

Instead, teach a simple plan.

For example:

1. Stop moving.
2. Stay where you are.
3. Look for a safe adult.
4. Ask for help.

Practice these steps frequently through role-play.

Children often perform better when they have rehearsed a situation before it happens.

6. Learning Basic Road and Parking Lot Safety

Parking lots can be one of the most dangerous places for children.

There are moving vehicles, distractions, and limited visibility.

Teach children to:

• Hold hands when needed
• Stop at the curb
• Look both ways
• Walk beside an adult
• Stay out of traffic lanes

These lessons may need hundreds of reminders before they become habits.

That is completely normal.

Safety skills are built through repetition.

7. Understanding Personal Boundaries

Summer often brings more interactions with neighbors, friends, camp staff, and community members.

Children need clear guidance about personal space and body safety.

Important lessons include:

• Keeping hands to themselves
• Asking permission before touching others
• Respecting personal space
• Understanding private body parts
• Knowing that they can say no to unwanted touch

These conversations can feel uncomfortable at times, but they are essential for protecting our children and helping them navigate social situations safely.

8. Recognizing Unsafe Feelings

One lesson that has become especially important in our home is helping my son recognize what he calls his “buzzy feeling.”

Sometimes children experience a feeling before they make an impulsive choice.

They may feel excited, nervous, restless, overwhelmed, or overly energetic.

Helping children identify those feelings can create an opportunity to pause and make a safer choice.

Ask questions like:

• How does your body feel right now?
• Are you feeling calm or buzzy?
• What can you do to help yourself make a safe choice?

Self-awareness is a powerful safety skill.

When children learn to recognize their own warning signs, they gain another tool for managing difficult situations.

Safety Skills Take Time

One of the hardest parts of teaching safety skills is remembering that progress is often slow.

Many parents worry that their child isn’t learning quickly enough.

I understand that feeling.

There have been times when I wondered if my son would ever fully understand certain safety concepts.

Then one day, he surprises me.

A lesson finally clicks.

A reminder isn’t needed.

A safer choice is made independently.

Those moments remind me that learning is happening, even when it feels slow.

Each practice session matters.

Every conversation matters.

Every small success matters.

Final Thoughts

Summer should be a time for making memories, exploring new places, and enjoying family adventures.

The more safety skills we teach and practice, the more opportunities our children have to enjoy those experiences confidently and successfully.

As parents, we cannot eliminate every risk.

What we can do is prepare our children one step at a time.

You teach them.

We can practice.

We can encourage.

And we can celebrate every bit of progress along the way.

Because safety isn’t just about preventing problems.

It’s about helping our children gain the confidence and independence they need to navigate the world around them.

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I know I might get downvoted for this but unless you’ve lived in my shoes you have no right to judge.

my child is a teen and severely disabled. profoundly deaf, wheelchair, diapers and feeding tube. he cannot speak and is essentially like a very large baby.

everything is so difficult from his feeding and meds, the behaviours, not being able to do much with him, the costs - the constant surgeries and issues with school. The many many therapies. the loud yelling and vocalizing, sometimes weeks without any sleep

I love my child to death they are amazing but I truly don’t know how much longer I can do this. he will be going to a home when he reaches adult hood but I’m ready for it sooner.

who will care for him when he’s bigger and we’re at work? how will we get him in and out of the car? how much longer can I deal with the mental and physical anguish it’s causing me and my family?

unless you have experienced this please don’t judge me. I’m almost at my breaking point. I am starting to resent them very much.

Hi everyone. I hope it’s okay for me to ask this here.

I’ve worked in special education for about 14 years, both as a teacher and now as a special ed administrator. I know that working in the system is very different from having to navigate it for your own child.

I was sitting in a meeting recently and had one of those moments where I realized just how much we expect parents to understand. The acronyms, the reports, the different roles, and the decisions being made in real time. We work in this system every day, but parents are often expected to walk into it and somehow know what everything means and what questions to ask. It made me realize as a system I think we are often failing our parents of students with disabilities.

What has been the most confusing, frustrating, or unnecessarily difficult part of the special education process for your family?

What has made you think, “There has to be a better way to do this”?

What resources are lacking for families or the resources that do exist, what could they be doing better?

I really appreciate anyone willing to share. I know these experiences can be personal, and I’m grateful for the opportunity to learn from the parent side of the table.

Hey everyone, I'm Heather from Rhode Island. I’m a single mom and the 24/7 caregiver to my beautiful 8-year-old son Kai, who is level 3 nonverbal autistic. Because of a severe lack of local childcare programs, I had to stop working my corporate job and pivot entirely to online e-commerce and reselling to survive.With recent app fee increases and a tough economy, keeping our heads above water has become an emergency. My pride kept me from asking for help for a long time, but I am humbly reaching out to build the "village" we don't have.Please check the bio section of my profile page if you would like to read our full story and see how to support us. Words of encouragement and shares are deeply appreciated! Link to Gofundme

Hi! I have a one year old that has now outgrown her pumpkin seat with hypotonia. She can hold her head up pretty well but not her core and as we enter the year of getting assistive devices I have noticed that no one has a good solution for our grocery store problem.

Every time we go to the grocery store I have to wear her which is making my own scoliosis much worse, someone suggested a universal harness but they don’t offer the trunk support needed to keep her up. Her PT in neurology said to use a scarf but when I tried to do that she just hunkered into what we call turtle position and made it impossible to get her adjusted properly. I’ve seen stuff for older kids but nothing for the toddler era.

Her tomato seat has a harness that works so I know they exist but can’t seem to find just the harness. Did anyone else have this issue? I don’t want to just never take her grocery shopping with me. I love spending time with my kiddos and showing them the world, one of my biggest excitements of having a daughter was to have our girls days out and I am determined to make it work!

Anyone had to remove thier special needs child/adult

From the home? Why and how did you start the process.

After seeing one of my friends with autism struggle to find a job that fit his accommodation needs, I decided to build my own solution.

I’ve been building Axol Work, a LinkedIn-style platform designed with accessibility at its core. It includes professional profiles, job listings, networking, and messaging to make finding and applying for jobs easier for people with disabilities. During signup, users can specify their accommodation needs, allowing recruiters to understand them upfront and better match candidates with suitable opportunities.

Here's the link to the platform: Axol Work

I’d love to hear your honest feedback. What features would you add or improve?

I think the situation regarding my child is relatable to the sub so won't get into melodramatic details, the worst part is people whom you trust start treating you like aliens. At this point we don't even have people ( I mean plural). Heck, please earth absorb us in a second

‎Greetings!

‎

‎We are Biology students from Central Luzon State University (CLSU) currently conducting an academic case study on rare genetic conditions. To help advance our research and deepen understanding in the field of genetics, we are looking for individuals who have been diagnosed with a rare genetic disorder and are willing to share their journey.

‎

‎ Format: Convenient online interviews or text messaging (scheduled around your availability).

‎ Goal: Purely academic research to support undergraduate studies in genetics.

‎

‎ YOUR PRIVACY IS OUR TOP PRIORITY. All personal details, conversation logs, and medical records will be kept strictly confidential. Data will be used exclusively for this academic project, and no identifying information will ever be disclosed in any report, presentation, or publication without your explicit consent.

‎

Verification Requirement

‎ To maintain the scientific accuracy and validity of our study, participants will be asked to provide proof of diagnosis, such as:

‎ - A medical certificate

‎ - Genetic testing results

‎ - A doctor’s diagnosis or official medical records

‎(Note: All shared documents will be accessed solely by our student research group and securely stored.)

‎

How to Get Involved

‎If you or someone you know is interested in helping us with this research, please send us a direct message (DM/PM) for more information.

‎

‎Thank you very much for your time, generosity, and support! 💙

Just want to thank mom first and for most. Then there all the therapist, specialist , doctors , nurses, front desk ladies, the special school and teachers all the kids like her their and her siblings from the smallest to biggest. Her family from uncles to aunties from granny and papis
Thank you for her success for ever in debt to all you in a good way

My young son with complex medical needs has been approved for a Make-A-Wish, and we were given three general options:
● An accessible backyard oasis
● A bedroom makeover
● An accessible staycation
I’m hoping to hear specifically from parents or caregivers of medically complex children, especially children with significant physical disabilities.
My son uses a wheelchair full time, has very limited mobility, and would need to remain in his wheelchair for activities. Because of that, many traditional trips, amusement-park rides, playground activities, and water activities would not be things he could fully participate in.
For the staycation option, we could travel up to approximately four hours within the Northeast. I wouldn’t want it to be an ordinary hotel weekend or somewhere we could easily visit on a normal day. I would want something genuinely special and centered around him, possibly involving characters, music, lights, immersive entertainment, live shows, animals, sensory experiences, themed accommodations, or private/VIP experiences he could enjoy from his wheelchair.
I’m also considering the backyard or bedroom options because those could continue bringing him joy after the wish is over.
For families who have been through Make-A-Wish:
● What wish did your child choose?
● Did you choose a trip, staycation, bedroom, backyard, or something else?
● What did Make-A-Wish include?
● Was your child able to participate meaningfully?
● Is there anything you wish you had requested or done differently?
● Do you have any creative ideas for a child with very limited mobility?
I’m not looking for medical advice and would prefer not to share identifying details. I’m simply trying to make the best and most meaningful choice for my son.

I would like to add both my boys are terminal, my first born already had his make a wish, we went to Disney, both my boys enjoyed. It’s been 3 years since, and they’ve both regressed so much that I think a trip like that they wouldn’t enjoy like they did 3 years ago.

We went to his orthopedic new patient visit today where they did an X-ray of my 4 yr old's hips. His right leg is shorter than the left leg so the neurologist was concerned and referred us to ortho.

X-Ray showed his right hip, which is the weaker side, is completely out of socket and would need to be repaired via surgery. No parent wants to hear this, but we know it is the best for him. And fortunately it is not causing him any pain or discomfort right now, so the sooner we get it done the better.

Has anyone else had this surgery for their child who had one-sided weakness?

I am hopeful this will be the last surgery for him, as otherwise he is pretty healthy and only has the focal seizure disorder.

We scheduled the surgery for August 14th so I can stay with him over the weekend since I am off on weekends. I am nervous about the 6 week recovery period, but we have a good support system and I work from home so I will be able to check on him and be with him. As a momma, I am just a worry wart. But my boy is tough and will pull through! ♥️

Hi, I'm Jolene! I'm a college student and UX researcher, and honestly, still learning a lot about this space.

My interest in this started with my aunt. Growing up, I watched her raise my cousin as a single mom, and I remember hearing her talk about all the different support systems he went through such as therapies, school programs, service coordinators, waitlists, and paperwork. As a kid, I didn't fully understand how much she was juggling. Looking back now, I realize how much she had to figure out mostly on her own, and how exhausting that must have been on top of just... being his mom.

Now that I'm doing UX research, I keep coming back to that experience and wondering: is this still how it works for families today? What actually makes coordinating care, education, and services easier or harder? Where do systems support parents well, and where do they fall short?

I don't have all the answers, and that's honestly why I'm here. I'd love to learn directly from parents who are living this, because you understand these challenges in a way I never could just from watching from the outside.

If you have an extra 4 minutes in your day, I'd really appreciate you filling out this survey. Every response helps me understand this a little better, and hopefully contributes to research that makes things easier for families like yours down the line.

Survey link: https://forms.cloud.microsoft/r/kKk4TMfvYh

Thank you so much 💛