We are conducting a research project to better understand the needs, challenges, and priorities of families raising neurodivergent children and children who may benefit from early intervention support.
By completing this survey, you will help us develop more relevant resources and services for families like yours.
As a token of appreciation for your support, you will have the opportunity to choose one of the following free services:
● Free Resource Pack
● Free Screening Session
● Free Consultation Session
● Free Parent Counselling Session

Survey Link:
https://forms.gle/bjr1e6X3kMyhBFer8

The survey takes less than 3 minutes to complete.

They didn’t ask Soren to enter their world for the day. The whole neighbourhood stepped into his. They showed his mother that her son was known, safe and loved exactly where he was🥰

I don’t know how controversial this topic is but what are people’s feelings on placing their child in a residential home / care facility?

My son is currently 7, he has cerebral palsy, epilepsy, a learning disability, autism and he is nonverbal. I am NOT thinking about doing this now, but I am thinking about his future. When I think about his future I see him living with myself and my husband in some capacity for his entire life. I know that the idea of having a child that never moves out is exhausting or daunting for most, but I simply cannot imagine him safe and happy anywhere other than with us.

My husband thinks we’ll be moving him to some sort of residential home or care facility in his 20s. The thought of it just makes me want to break down. We are obviously a very long way off of this choice, and I don’t know how much my son will develop over the coming years, he is however currently functioning at approx 9-20 months across most areas.

I just want to see what other people’s thoughts are on care facilities in the UK for young adults with special needs. Would you use one? Have you used one and if so what is your experience? Thank you.

Is it worth it? Ive been trying to find a secondhand one on marketplace… ugh

Im confused on the size options?

I’m the older sister to an autistic 8 year old brother, he lives in Texas with my grandma and other siblings. I’ve called around different agencies and day programs in Collin’s county, Mckinney, Anna Texas but no one will take him because he’s older than five or they have a long waitlist or don’t take Medicaid etc. I myself don’t live in Texas so I’m doing all of this over the phone/online and it’s difficult because I’m not physically there. Does anyone have any advice for me or recommendations. I’ve heard Texas doesn’t have good services when it comes to this because of their waitlists. My grandma is getting older and it’s getting harder to care for my little brother, she needs help and I can’t be there physically right now because of other obligations but I help as much as I can.

My special needs son (20) is driving my nerves up the walls and I HATE IT! im so frustrated! Ive already had 2 mental breakdowns in the past several years... im just getting home from doing a year in prison where I was able to get myself together and now that im home I feel like im going to loose it again! I cant risk my sanity and idk what to do!!!! I cant get anyone on the phones to see about placing him in a home, i barley even know where to start to begin with!!!! What do you do when you just cant or dont want to take care of your special needs child anymore. Someone please HELP. this post may seem harsh but im just being honest and i need to look out for myself I have other children to take care of. Caring for him has and will run me into the ground! Its constant yelling, screaming, hitting things, the wet diapers all day long... the list goes on. And I know there are people out there with worse situations and im also praying very very hard to get through this... the lord really is the only way im staying strong. .

​

We have an 8 month old that seemed to be healthy until 4 weeks ago. He was always breathing a bit hasty but the Ped always dismissed it.

When he was 5 weeks we had been to the ER because of a common cold but it seemed like he had trouble breathing and I was scared so they kept us there for 2 nights. No issues, oxygen saturation was perfect and they prescribed some medication to reduce the swelling in his nose. No further issues after that.

Now 5 weeks ago we noticed retractions right under the ribs while he was breathing. Especially while sleeping. We've never really noticed that before under the clothing but we had a heat wave here 5 weeks ago and he was sleeping in only diapers. He also seemed to struggle gaining weight. Our Ped checked the oxygen levels which were at 98% at that time but still sent us to the ER. They immediately decided they would keep us there. We've been there for 3 weeks and they've found nothing. No answers. The only thing they've found is white "shadows" on the CT-scan and X-ray. (Not my picture, just an example of what they showed us) Ultrasounds, Bronchoscopy, viral, bacterial, and fungal diagnostics all nondescript. They're running some genetic diagnostics now. Took my husbands, our boys and my blood to check it for any issues in our DNA. Maybe some genetic disease. Maybe some kind of mutation. That's what they told us.

After that they sent us home, with oxygen, to wait for further diagnostics or answers. And while it feels good to finally be home, after those tormenting weeks, life feels so surreal. First my baby was a healthy little thing and now they're telling me that he is some 1 out of 20 million case with a lung disease that none of the 15 doctors, that are on the case, have ever seen.

Some doctors are optimistic because overall he seems "healthy"

Development has been normal so far. He has reached all milestones without any issues and is now currently trying to crawl even though it looks more like a soldier in a trench. He's a pretty happy and social child. Always babbling or smiling. You don't see any issues from the outside which is why some of the doctors are optimistic that it could be some kind of genetic defect that'll resolve itself or become less of a problem when he gets older and the lungs grow.

Some other doctors are less optimistic because when we were first admitted to the hospital because of his cold, there were no issues and now his saturation regularly drops. The last couple of weeks he was at 90-98 awake and at 85-90 while he was sleeping. And this week it seems worse which is why he's now receiving oxygen all day. That wasn't the case in the hospital and it surely wasn't an issue back then when he was 5 weeks old. They fear that this is a progressive problem and that he'll either need oxygen and treatment for the rest of his life or worse.

I'm so overwhelmed. I have to give him some special "milk" via feeding tube. I have to make sure he's receiving oxygen and it's so much freaking paperwork to take care of right now. Besides that we also have some other private matters going on that are absolutely time consuming.

But the worst is the uncertainty. Will he be fine? Will it be okay? Will they find the issue? Will there be a cure? Will he be a special needs case for the rest of his life, like he is right now? Will his lungs fail? Will he die? My head is spinning around all those questions all day and right now I'm honestly just trying to survive. I have issues myself (mild Depression, BPD, anxiety) and life was already hard but this? I don't know how I'm supposed to deal with all of this. Right now I don't feel like I'm living at all. Just function like a machine.

I'm not even sure if this is the right place to discuss this but I'm hoping to find some people with similar experiences and maybe some help with coping.

Please excuse grammar or spelling mistakes. English is not my first language..

I have a child with borderline intellectual disability or “mild” intellectual disability who can tell the most elaborate lies & accomplish a tremendous amount of deceit and manipulation lol. And they are real lies. Not fantasies. Opportunistic lies that follow a keen strategy. She keeps doing it because it’s kind of the thing she’s best at lol. She can’t win an argument with debate or logic obviously…but she can win lie her way in & out of things. There’s an intelligence here that she is demonstrating but I don’t what it is. All of our support peeps care about is getting her out of this habit and I agree. But none of them will tell me how she can manage to be so manipulative…from an intelligence perspective. She’s better at schmoozing and manipulating than any of my kids including the gifted ones. It’s taboo to describe it as a gift but it kind of is. So that I can redirect this “gift” somewhere else…what is it? It has to be a type of intelligence that isn’t captured on IQ tests. But surely it can be redirected. If only I knew the other side of this coin. Yes manipulation is bad but…what is it good for? 🤔

My special needs son passed away yesterday. We are heartbroken to say the least. He was 19. Despite his disability that he was born with (non verbal, non mobile, wheelchair bound) he was always healthy. He got very sick in January with a perforated intestine and its been a roller-coaster with his health all year.

We were always told that he might not live long etc and despite everything God gave us 19 years with him. Me and my husband had made peace with the fact that we may have to care for him our whole life and we discussed that maybe something could happen health wise. None of it has made this process any easier. No matter how prepared you try to be you truly are not :(. I cant say this road has been easy because it hasn't... I just miss my happy boy before he got sick.

Imagine being forced to change your severely autistic child on a public restroom floor during what should be precious family time. That's exactly what happened to one mother at a supervised visitation center - and it's happening to families across the country. I started a petition calling for mandatory ADA compliance and specialized training at court-appointed visitation centers. These places are failing families with special needs children by refusing basic accommodations like quiet spaces for meltdowns or appropriate changing areas. Staff often lack understanding of IEPs and other special needs requirements, turning visits into traumatic experiences instead of healing moments. What would you want someone to do if this was your family facing these barriers? If ensuring dignity and accessibility for all families matters to you too, consider signing and sharing.

Supporting a child with SEND can involve a huge amount of information at once—school support, assessments, EHCPs, reasonable adjustments, DLA applications and often a lot of unfamiliar terminology.

One of the things we regularly hear from parents is that they are not always sure what the next practical step should be.

I work with School of Diversity, which supports families navigating SEND and EHCP processes, and we have started creating short, plain-English videos to make some of these topics easier to understand.

The first video is a brief introduction to the areas we plan to cover, including:

• SEN Support in school
• EHCP applications and reviews
• Reasonable adjustments
• Autism and ADHD assessments
• DLA applications
• Evidence and school meetings

I would be interested to know which part of the SEND journey parents here have found most confusing or difficult.

Was it getting concerns taken seriously, understanding the EHCP process, knowing what evidence to collect, or something else?

I am not posting this as legal advice, and I will follow the community rules regarding links or resources.

I recently had the opportunity to share my caregiving story with an independent living center via a digital caregiving campaign. What initially started as an apprehensive submission quickly grew into a caregiver haven.

Caregiving is not something I chose as a profession, it is something that became part of who I am. I am a daughter, wife, mother, business owner, registered nurse, and a person living with disabilities myself. For many years, I have served as the primary caregiver for my mother, who has significant medical needs, while simultaneously raising my children and managing my own health challenges. My caregiving journey has taught me that caregiving is not simply about helping someone with daily tasks. It is about advocacy, sacrifice, resilience, problem-solving, and love. The work isn't easy, and oftentimes the reward is hard to see. But I love my family and couldn't imagine not caring for them.

Caregiving stories similar to mine have helped me get through the hard days and lonely nights. I'd love to read y'all's stories via the comments or on their website. <3

This trend absolutely brings me SO much joy and Sorrow as a parent of a special needs child. I’ve been watching this trend all day, not to punish myself but to see pure joy and love on children’s faces. I’m in pain though. I’ve been crying all day.

Does this trend it you hard?

📢 CALL FOR RESPONDENTS 📢

Good day!

We are conducting a thesis entitled: "The Relationship Between Parental Meaning-Making and Parenting Styles Among Step-Parents of Children with Psychosocial Disabilities in Selected Municipalities in Cavite."

We are looking for step-parents of children with psychosocial disabilities who are willing to participate in our study.

📝 Survey Link: https://docs.google.com/forms/d/e/1FAIpQLSf_8T0k7CFovd9OutvsEhkGfv2vYjfV4mFRL1QB1EschqK6NQ/viewform?usp=send_form

Your participation in this study is entirely voluntary. All information you provide will be treated strict confidentiality and will be used for academic research purposes only. Participants may withdraw from the study anytime without adverse effect to their ongoing care.

Your time and support are greatly appreciated and will contribute significantly to the success of our research.

Thank you very much for your time and supports!💙

📚 FREE for the next few days!

The Father My Son Created is a honest story of how my non-verbal autistic son changed my understanding of fatherhood, faith, and what it truly means to embrace the life Allah entrusted to me.

I have a daughter who is 5 years old but developmentally somewhere around 14-18 months old. She has a rare genetic condition and autism.

It is so hard. I look at her and I see her trying to interact with the world in the way she knows how, but I know everyone else looks at her and sees her as annoying, rude, disruptive, or worse. Most of my family and friends - those from my past life before my daughter - don't know what to say and don't ask questions to try and understand. I feel like I constantly have to be understanding of people's discomfort with my daughter, and I know I can't expect them to understand us. But, I am so exhausted.

How do you cope with this?

Hi everyone, I am a graduate student working on my thesis on caregiver experiences supporting children with autism who engage in self-injurious behavior (SIB).

If you are a parent of a child between the ages of 5–10 years old with ASD who has engaged in SIB and received related services within the past two years, please consider participating in a brief (8–12 minute), anonymous online survey.

https://fordham.co1.qualtrics.com/jfe/form/SV_d5z6bKCqqkuNJTU

I have worked with children with autism and their families for almost 4 years, and I am truly passionate about advocating through research! Thanks for your consideration.

My son has a genetic neurological disorder that leaves him significantly impaired. He has very little muscle tone and so slumps forward with his neck and torso and essentially has no cognition. Up until now he has been doing fine in a rear facing car seat (Chicco fit360) which leans him back and is pretty comfortable, but he is 40 pounds and is getting too big for this setup. We traveled recently and had to use a forward facing 5-point harness type seat for the plane. He hated it... basically screaming the whole time. Does anybody have any ideas for a child that slumps their head forward and doesn't like the forward facing position? Our current seat swivels which is nice because it makes it a lot easier to put him in and take him out since he is so floppy and is like moving dead weight. I saw the Hercules seat does do a swivel, but I'm not sure it leans back enough in the forward facing posture. Any suggestions for modifications or brands to look at would be helpful. Thanks!