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Calling all parents of kids with special needs and disabilities!

Hi there, I've just created a group for parents of children with special needs and disabilities.

I'd love you to join!

I have two adopted children, one of whom has special needs. We're in the process of an autism assessment at the moment.

I'd love to connect with other parents and caregivers with similar and different experiences. I've made it a closed group because I think it's important that we can share and encourage each other in privacy.

#SpecialNeedsParenting #SpecialNeeds #Autism #Parenting #SpecialNeedsParent #specialneedsmom #autismparent #disabledchild #raisingadisabledchild #Children #Child #autisticchild #Carer #ADHD #childmentalhealth #anxiousparent #parentanxiety

Please join... I would love to meet you and hear your story :)

Parents of children with special needs and disabilities | An Online Health Community

This group is a safe place for parents and caregivers of disabled children and children with other special needs to come together, encourage each other, and share insights, wisdom, thoughts and questions.
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How do I cope with my sister moving abroad?

We’ve always been close and supported each other through shared trauma. Neither of us really have friends but we’ve always had each other. She’s younger than me and on the spectrum so I’ve spent a huge chunk of my life caring for her. I don’t want her to go and I feel like she’s abandoning me for a new life I can’t be a part of. I know I can’t stop her from going but I can’t be happy about it either and I’m afraid I’ll damage our relationship if I’m not supportive. I don’t want to be unable to share my day to day life with her. What do I do? #Autism #Carer #FearOfAbandonment #Anxiety

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#MentalHealth Musings

My husband found out today that his #Job is at risk. There'll be a consultation period of 40 days (sounds biblical, doesn't it?) so he'll find out mid January whether he's been transferred to another department (his department is being closed down) or whether he has to look for another one.
My #MentalHealth is already fragile so he's kind of my #Carer but to have this on top, and just before #christmas is just awful.
I wish I could do something but I can't work due to various conditions. Does anyone want a liver or kidney or something? 😉😉

See full photo

'We should just learn to live with it' 🤦🏿‍♀️🤢

I keep seeing the 'We should just learn to live with it' suggestion as a counter to restrictions. And it fills me with rage. Abject rage, because I cannot help but find the sentiment so selfish and ignorant.

Eventually yes, when we have a well researched and globally regulated & recognised vaccine fine! But even then!- the battle for survival will continue.

And till then!- I refuse! I refuse to sacrifice the lives of the elderly; those with learning difficulties, those with chronic conditions; those with disabilities. All of us. We have worked too gosh darn hard to live. To etch out our own existences.

And they too have worked too hard: friends, family, carers (formal & informal) have worked too blooming hard to ensure lives are lived to let your discomfort kill.

As I type this I know and acknowledge that this is polarising and I type this honestly sad that it is polarising.

I type this knowing and having experienced the fear of wondering if my employer would keep me on. Experiencing furlough and wondering whether it would cover bills and debts that still needed to be paid.

I type this knowing mine and most likely your nation has entered into a recession. One of the worst since records began.

I type this knowing we have a mental health crisis impending, when mental health services were already globally struggling.

But sacrificing the lives of one person, older or disabled, is not the answer.

If it is then it speaks more about how our societies chronically undervalue the lives of the disabled and elderly. How care homes were left to fend for themselves in the initial days of the Pandemic and are still reeling from losses:

It speaks how casually people assert 'Well they were going to die anyway, so 🤷🏿‍♀️'. As if that death, if even infinitesimally preventable, isn't a tragedy. As if it isn't a further stain on our overworked, under-resourced and underpaid health & social care systems.

This Pandemic is killing and it's killing cruelly and at times discriminately. BME/POCs/BIPOCs are dying at alarming rates globally:

So please, please don't even flippant entertain such a thing.

Listen to the fears of the elderly, disabled and chronically ill!

And listen to their hopes! That film they want to see! That best friend they need to chuckle with. That birthday party they can't wait to have!

We don't want to die. They don't want to die.

#ChronicFatigue #ChronicIllness #Depression #SickleCellAnemia #SickleCellDisease #Carer #Fibromyalgia #ChronicPain #DiabetesType2 #Diabetes #Anxiety #COVID19 #Asthma #HypothyroidismUnderactiveThyroidDisease #ThyroidDisease #IrritableBowelSyndromeIBS #Insomnia


Struggling to be the carer #Carer

I’ve gradually had to take on more of the Carers role for my husband who is extremely unwell. I find it physically almost impossible to do it all. I’m constantly pushing past my pain barrier #Pain to help him, & things like lifting his wheely walker in & out of the car to take him to appointments. I’m exhausted because I have a condition that stops me from sleeping till about 8am & then if any I might get an hour or 2 sleep #Sleep deprivation. All of his appointments seem to be early. I feel like my needs are not being met. I need to have a Carer not be a Carer. #exhaustion #Carer fatigue


Getting older sucks

#Guilt . My husband has been ill for close to 10 years #chronicillness. I have become his #Carer &. I resent it, also #resentment because he has done this to himself. #binging on #junkfood & inactivity have ruined his health. He knew it but couldn’t control the #Addiction to food. Now all of his major organs are shutting down. He has been #neardeath 3 times in the past year. We are looking at #nursinghomes . I #resent that our lives have changed. I love my husband, but he’s always been a #difficultcompanion. I’ve had to do without many things that were important to my #Happiness & now I’m still having to devote all of my time to #beinghiscarer . When will it be #myturn ? Obviously I feel #disgustedwithmyself for thinking this way. And feel #Shame . To admit to it.


#Autism Accepting Change

Every year there is an Anime Movie festival that, as a fanatic lover of all things anime, I attend most years.

This year however, due to finances, I (#Autistic #LateDiagnosis ) and my brother (also autistic and I am his #Carer #AutisticCarer ) so we decided to host our own festival.

Guy is excited to have his 2 best friends over, and I have a good Uni friend visiting for the fun.

Have probably over-catered the event but I get enjoyment from seeing others enjoy themselves, and I like baking and the prep.

The only issue I have is allowing someone in my room, which I have to do, that’s where my stigma lies.

Of course you can’t talk to anyone about it because explaining to them why you will HAVE to deep-clean your room and wash your bedding after them using it is both socially acceptable and down right rude.

Understandably so! I know I would be feel offence if I knew someone did after I left.

But it is something I will have to do to feel like I have reclaimed my space. Secretly and without discussion.



13 1/2 hours

5.30pm last night, I was experiencing sickness from extreme tiredness caused by 2 months worth of even more extreme #Insomnia

Fed the cats and made sure my brother had had his dinner (#Carer #AutisticCarer ) then collapsed in bed without any ablutions.

I did manage to make sure that my alarm was set for the next morning, so I know that it was 1759 according to my minion (phone) before I finally closed my eyes.

Woke today at 7.30am!!

I had even turned off the alarm I had set the night before and slept an extra half hour!!!

AND it was properly sleep - solid and restful!!!

Feel so much better this morning. Am practically whizz bang with energy.

Don’t know how long it will last as I have people staying over for the weekend from tonight and I have sooo much to do before then

But #Fingerscrossed


Sick and Tired #SleepingSickness

Without my #Cats informing me that their meals are due, my schedule would no doubt consist of something akin to one of a night-worker.

Instead I subsist on a few hours sleep per night ( #Insomnia ). The evading rest with possible #SleepApnea combined with loving nudging mewing causes me to become more and more exhausted each day.

Today my batteries couldn’t continue (the image of swapping them around in the TV remote to eek out a few more moments of functionality comes to mind). By 11am I was feeling nauseated and dizzy.

My fatigue was exaggerating my #Autism as my subconscious couldn’t muster the ability to use #SocialMasking and the #Clumsiness attached to my #Dyspraxia kept causing me to constantly collide my flailing limbs with inanimate objects. #Forgetfulness is the bane of my life which is even worse when I am not just responsible for myself #Carer #AutisticCarer but it had reared itself up with surprising frequency in the 4 hours I had been awake so far.

I decide to be kind and relent on my usual rule of not napping when I can’t sleep properly at night, and give myself a few hours: followed by a relax in the bath listening to my favourite podcasts.

A quick recharge before real life had to continue.

However, when my alarm went off it was like my body was heavier than normal, my vision was unfocused, and my usually over-active mind was filled with one thought: #Sleep

My “kitten” kept watch over me like a little furry nurse-maid, giving me a quick nuzzle and a loving purr the few times I opened my eyes. Until the next meal-time eventually stirred my limbs into shifting into actual movement.

I thought about taking the evening off; having that bath, burning some incense, and catching up on of those long-recorded programs...but an email that I had forgotten for for the nth time reminds me that that nap was probably as selfish as I can be today.

It’s now nearly 7pm and I’m still going to have that bath ... but after dealing with reality once more.

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