Stephanie - One year on without you. I'm sorry.

I've tried to write this several times Stephanie and I'm finding it so hard. I can't believe a year has passed since you have died. 

Every postcard, letter, birthday or Christmas card written, every gift sent, every hello and every goodbye was the same. You didn't respond to us when you were alive. Every word spoken to you then went unanswered just as this message to you now.

Did you know who I was? Did you know how much I loved you? Cared for you missed you? Fought for you?

Were you even aware that all these things were possible?

I doubt you knew what day of the week it was, did you even have the concept of days of the week?

You knew when you were hungry, thirsty, when your pad needed changing, but you were unable to communicate that, ask for food or drink. You'd laugh or cry, pull your hair or ours, take yourself to your room or bang on the kitchen counter. It was all guess work with you Stephanie, a process of elimination, starting each time with your pad, a drink, then food, check your feet, make sure your clothing wasn't too tight, then what? Were you ill? tired? In the end you died because you couldn't tell anyone in time that you were unwell. Who knows if you'd been able to communicate that you were unwell, I might not be writing this letter to you.

Everything was a guessing game with you. Were you happy? Did you like the food you were given? Did you prefer cold drinks? Did you want more cakes and chocolates or were you a savoury girl like your dad?

You ate what we gave you, you drank what you were given. You stole food from your brother's plates, they would fight for their Yorkshire puddings, you'd win. 

Did we read into your responses that you preferred one thing to another? Did we choose not to give you a certain food, drink or experience because we saw a negative reaction one day and assumed it was because you didn't like it.

I'm sorry for taking the raw onion off you when you grabbed it in the kitchen, when you pulled a face but carried on eating it, you might have been enjoying it, but the social norms said not to let you eat it. I'm sorry I let you eat the garden snail that one time. I tried to remove it from your mouth. I was gagging as you crunched through the shell, you bit my fingers and clamped your mouth shut. In the end I walked away from the sound of the chewing but not too far that I couldn't see you until you had finished, then gave you a drink.

In that case I'm sorry for all those times and all those times I missed the signs that you were uncomfortable or were unwell or just pissed off with me or just wanted to be on your own in your room, but we dragged you out. I'm sorry I shut the car door on your fingers. I've never forgiven myself for that.

After you died I discovered the staff in your supported living had kept every card and letter I'd even written. They were chewed and battered, they had read them to you, they had given them to you to hold. Then after you tried to eat it like you did with everything placed into your hand or you swiped, you dropped them to the floor. 

I'm not sorry I fought for you, loved you and I'm not sorry if I got it wrong. I'm not sorry for the meltdowns I had in various supermarkets and coffee shops about the state of the disabled toilets. I'm not sorry for telling people to 'fuck off, life is hard enough as it is' without their thoughtless comments or stares and physical pushing into you as I struggled with a trolley, your bag, a door and a step.

I'm sorry that it's all over. That you don't get to be spit on me one last time, or get to pull my hair or leave me feeling absolutely shattered at the end of the day having taken you out for a coffee or a food shop. That I don't get to lift you in and out the car, while you dig your finger nails into my arm, or drag you round the supermarket anymore or pick you up off the floor because you're tired or change your pad and stop you from grabbing me or the pad and the dirty surfaces in an enclosed space. That I don't get to fight with the staff about remembering to put your socks on inside out so the seam doesn't rub your feet and cause blisters or sigh and raise my eyebrows and go through the whole why you had to wear certain boots to support your ankles and not these flimsy ones, they kept buying you because they were fashionable.

I'm also sorry not no one else shares our loss, that no one else misses you, no one else talks about you. 

Looking after you was hard. We were fortunate that we had lots of external support due to your complex needs. It wasn't a choice not to have you living at home. It wasn't a choice to love you.

Your death resolves us of worry, for your future, what happens to you after we've gone, who fights for you after we're no longer here. That was as much a part of our lives as you were. It came in equal measures. You are no longer with us, our hearts ache for you, our loss, our future without you.

I'm sorry there won't be anymore photos.

Word of the Week - Stopped

Time just stopped when Stephanie died on the 7th October 2024. Life goes on and since then we've had 2 new grandsons join our family. One in February 6 days after Stephanie's birthday and one born yesterday that we've yet to meet.

We have 4 grandchildren now and they are our world. When the 5 children were small they were hard work, managing their different needs and activities but Stephanie our eldest was always there and part of it, she was the one who bought our family together. The boys just saw her as their sister and didn't question what she could and couldn't do, just accepted her for who she was, but they all grew up, something that she never got to do.

France 2002

Another holiday time and time not spent with Stephanie. I'm not getting caught out by events anymore, but it doesn't mean I'm finding events without Stephanie easier. Occupying my time and brain doesn't fill the space, it just highlights how much space I have for her.

We've had a fun filled few weeks with our adult children and grandchildren with lots of Easter activities, camping, days out and time with friends, but there has been no visit with Stephanie, no Easter eggs bought and delivered, no coffees out with her on our way back and forth, calling in to see her on our travels, no taking her out with me while I've done my shopping for everyone else. Different routes driven as there is no need to go via Gloucester anymore. 

It's not just Stephanie that died, it's part of our lives that have stopped existing. Being the parent of a disabled adult child, is so very different than being a parent to our other adult children. 

All our children left home and live independent lives, including Stephanie. But they have jobs, financial independence, their own homes, partners, children. can make their own decisions, can ask us for advice, talk to their mates, make their own decisions, make their own mistakes, ask for help, ignore us.

They can do anything they want, they can even take themselves to the toilet.

Stephanie left home and moved into supported living, but Stephanie couldn't do any of that. Nothing. Stephanie couldn't speak, feed herself, communicate. Everything Stephanie needed to do, was done for her, other people decided what was in her best interest and every year there were meetings to decide what was in her best interest, she never attended the meetings, it was too disruptive for her, for the meeting.

Her budget, how much, how it was spent, her personal allowance, financial advocate, her staffing levels, her health, her home, her activities, her transport needs, dietary requirements, dentists, meetings for blood tests. Every single thing you do for yourself, every single thing you do for a child, if you can imagine it, it was done for her and every single thing had to be agreed. Not task by task, but yearly, financially and by whom. By us as parents, her carers, social services, health and everyone else who had a financial interest.

It took a lot of our time, not a minute of it was resented, we were grateful of every single bit of support and help we received, but it was time consuming. Phone calls, meetings, emails, forms, assessments, budget cuts, reviews, worry. In between there were problems that needed sorting, staffing issues, safeguarding concerns. 2 years of covid, constant changes of staff, management, ownership of her home, changes of service users, issues with other parents to contend with.

After Stephanie died there was a flurry of activity sorting out her finances, exchanging emails sorting out a few bills, collecting items from her home, a few visits and calls and then nothing. 

It all stopped. Everything has just stopped.

Missed opportunities - every weekend. When a child dies.

Every weekend since Stephanie died on the 7th October has been a weekend missed.

We visited her every 2-3 weeks. 

We took her out to the local supermarket and did our weekly shop, we had lunch in the cafe.

We went to The Range, B&M and into Starbucks for a coffee.

We went for a walk around Gloucester Quays and popped in for a Caffè Nero.

We went to B&Q when Peter had a DIY project on the go.

Stephanie didn't care where she went, she didn't know who we were in terms of 'mum and dad' and why we were taking her out, but she trusted us, recognised our routines and was happy to be with us.

We planned our visits around events that were coming up, such as birthdays, Christmas, Halloween, Easter, any shopping we needed to do.

We alternated our visits to the above places depending on the weather, her mood and health. Had she slept well the night before? Was it over lunch time we were taking her out? Did she have a planned activity in the afternoon? Get her home in time for dinner?

Occasionally we took her further afield, but she wasn't a fan of longer car journeys.

We chose places where the ground was even. She treated every colour change in the supermarket tiles as a drop and would just stop walking and let us help her over the non existent obstacle, clutching our arms, leaving pinch marks in our skin.

She liked the noise and the lights of the supermarkets, she loved pushing the trolley and would often grab someone else's trolley and attempt to wander off with them if we stopped too long to look at something.

She liked to be on the go all the time, then sometimes she's just want to sit down and rest and it would be hard work getting her going again.

Once I took her for a walk near her home and she just sat in the leaves on the pavement as they were too deep for her to lift her feet through and eventually I had to pick her up and carry her out.

We needed to always have a toilet nearby and carried a large changing bag with a set of clothes, her plate, cutlery, a bib and her water bottle.

When she was younger we mostly visited family and friends, went to the park and she'd play for hours on the swings. 

She joined us for holidays, days outs, walks up the hills.But as the kids grew older, as did she, the time became just Peter and I and the supermarkets.

She didn't sit and watch the TV, there was no resting when she came home on weekends and gradually we went from every weekend, to alternative weekends, to once a month, until eventually she never came home again.

It didn't stop her being part of our lives. We saw her often, we had regular contact with her home, even when we lived abroad for 12 years. The boys now adults would come with us for visits, my mum would meet us in Gloucester for days out.

It took 2 of us to take her out due to her needs. We moved back to the UK because of her, we moved back to our former home to be near her. We planned our old age around her.

The last 10 weeks have been unbearable. 10 weeks of only being 25 miles away from where she lived for the last 16 years of her life. 

'What shall we do this weekend?' We'll pop to see Stephanie. Take her out for lunch. I would combine a trip to B&M and The Range because she took forever to get around pushing the trolley and Peter would patiently walk with her while I go the chance to shop. 

In the supermarkets, Peter would do the food shopping and Stephanie and I would wander around the parts that Peter had no time for, the clothes, toys, toiletries, homeware. 

At Gloucester Quays if the weather was nice I could shop and Peter and Stephanie would go for a walk. I'd meet them at the coffee shop. Phone in hand ready for the call to say she needed to be changed and the endless battles of finding a clean and useable disabled toilet.

Every weekend is now an opportunity to visit Stephanie. I had two dates penned in my diary to visit her. I honoured both dates on my own. The first one I visited her home and paid her final utility bills. The second one I went for a coffee in Starbucks, but I couldn't face the shopping on my own.

We didn't go to her home or into Gloucester in November. There are plenty of other places and people we can visit, plenty of things we can do to fill the time, but each time we did anything our thoughts were 'we could've been with Stephanie.'

Two weekends ago Peter and I dropped off a Christmas present for the staff. We would've been dropping her gifts off, taking her out for a coffee.

We're going away for Christmas, it was already planned and booked before she died. We would've popped in this weekend, just because. There would've been a Starbucks, another opportunity to visit her.

There are no more opportunities to visit Stephanie, but there are endless weekends where we'll be thinking 'lets go see Stephanie, it's been a while since we last went'

Our last visit.

What I need from a disabled toilet?

Life is hard enough as it is parenting a disabled child, but to not have access to clean and hygienic toilet facilities when out and about is just not acceptable.

A brief bit of background before I continue.

(Step) Daughter is 34, she is double padded and has no control over her bladder of bowel movements.

She lives in Residential Care.

We take her out twice a month in her local community.

She does not require a changing table as she stands to be changed.

Her only need from a disabled toilet is a space big enough for her to stand in, with a sink or rail to hold onto.

What I or her carer need is the following:

A clean toilet so the lid can be closed meaning there is a place to put the clean nappy/pad and the wipes. A shelf or table top of course would be even better.

A clean sink for her to hold onto so I can reach the items I need.

An accessible, clean, fully working pedal bin for waste.

A working lock for privacy.

A clean floor.

Fully working hot and cold taps.

Hand soap.

It's not much to ask for. We are a 1st World Country. The disabled toilets we visit are in Supermarkets, restaurants, coffee shops. Owned by global companies with paid staff on site.

We had a particular nasty experience in a supermarket over the weekend, due mainly to the fact the toilets were filthy, which ended up with me in desperate need of washing my hands as there was no soap in disabled toilets or the ladies. With our daughters mobility I need to hold her hand when she walks plus carry her changing bag, if her dad hadn't been there to pass her to, I would have had big problems with hygiene.

I made a complaint at the customer services desk and emailed a complaint, but I still haven't had a reply from them yet, so I may end up naming and shaming online.

Finding toilets with cubicles big enough is hard in the community, it does limit us on where we can go and places we can visit. Often these toilets are used for additional storage, are dirty and aren't properly equipped for our needs.

Do you need to use disabled toilets? What's your experience of them?

Life is hard enough without having to deal with prejudices around disability

Some background for context.

We have 5 kids, all adults now. Eldest is profoundly disabled and lives in a care home near by. Up until 2011 when we left the UK, she would come home for visits, alternate weekends and we'd visit and take her out with us, the alternate weeks. Back then with 4 other kids and full time carers we mostly took her with us to do a food shop, have a drink out and home visits.

For the past 10 years whilst we've been abroad, taking her out has only been possible when either both of us are together, 2-3 times a year or when I've been able to get one of the adult children or a friend to come with me. We can't manage her and her needs on a 1:1 basis anymore.

So visits have been in her home, taking her for a walk around the block, time in the garden or with both of us and/or help, we've been out for lunch or a drink and cake.

Since we've been back in the UK our visits have been fortnightly, just a couple of hours at a time, but we've been exploring further a field, spending more time out in the community.

Normally after a visit, it would be a couple of months before we saw her again, so we focused on different aspects of our visits. Now we're back in the UK, time is less precious and we are enjoying spending more time with her, however we've noticed just how uncomfortable other people can feel around her and us.

We had issues with the neighbours , which is now being dealt with by Social Services, but we can't deal with people's prejudices, it makes us upset and it spoils the visit.

This week we went out to the shops and for tea and cake. Our daughter doesn't do waiting, queuing, sitting still, she likes to be on the go and is happy to wander. However this wandering can lead her to other people, she'll steady herself on the back of a chair, with a shopping trolley, on someones arm. We don't let her grab at people, she is under full supervision, but sometimes she can get up and move quicker than we can respond.

In general people are caring and understanding, their reaction when grabbed can be quite alarming but when they look round they can see it's not intentional and will accept our apology, tell us not to worry. Other times people will baulk as she walks towards them. She has no speech, no social awareness and no way of expressing any distress (you can see an example here)

So while I stood in the queue in the coffee shop, my husband sat at a table, she climbed and crawled over him, she walked between the chair and me in the queue several times, then on her way back she went to steady herself on a chair, an empty chair where a woman and her daughter had just sat down. The woman recoiled, tutted, shook her head and promptly moved seats. Whilst the woman in the queue behind me raised her eyebrows, her friend seated at another table smiled at my husband and our daughter, in almost a sort of apology on behalf of the other woman.

We shouldn't have to deal with any of us, but unfortunately we do. We're usually too busy sorting her out to have to deal with these attitudes and always think of a comeback later on when we've calmed down.

Staring and looking is something we can cope with, as my husband says anything that looks outside someones norm always raises a second glance.

We're determined that the next time someone responds like this we're going to ask them just what part of the situation makes them feel uncomfortable?

Do you any experiences of this? How would you react in this situation, both sides?

The importance of wearing socks correctly with a disability

How do you wear yours?

With no verbal communication or the ability to express their needs other than crying, laughing, dropping to the ground, which can all mean happy, sad, angry, hungry, fed up, it is important that our eldest child wears their socks inside out.

It's often considered to be a control issue from the parents of a child in care, often it is the only area of control they have when their child moves into a care facility.

As a parent and as a carer, I've seen and been on both sides.

I used to work in a Residential home for children who were severely affected with their autism. One set of parents would inspect their child's wardrobe on each visit and complain about the staining on clothing and odd and missing socks.

It would upset the staff who all did their best to keep up with the cleaning, personal hygiene, laundry, cooking, education and just life in general with someone who would lash out, bite staff, run away, sit naked in the car park. Just keeping their child, others and themselves self was a full time job.

But I understand where the parents were coming from. They spent a fortune of good quality clothing that their daughter liked. You've no idea how many times we had to return to places often after our shift to collect items that had been 'posted'

Their 16 year old daughter was in care because they could no longer manage these things by themselves, the only area they had control over any more was the clothes they bought her.

We've been battling with our eldest's care staff for years over their socks. We don't care if the socks are odd or if they get lost, if they're dirty at the end of the day, all we care about is that they are put on inside out.

It's not a difficult request, it is on their care plan and we have explained the reasons why, numerous times.

So why?

With mobility issues and having been born with talipes, it is essential their feet are looked after, not having walked until the age of 8, mobility is the only aspect of their life they have any control over.

There used to be special boots made, but we were able to source supportive boots on the high street, which support the ankle and the arch, enabling them to walk, in comfort, without feet getting sweaty and more importantly no rubbing to cause blisters.

Wearing socks the right way can cause blisters, where the cotton and the pattern can rub the foot and as explained above, finding out what is wrong when their reaction ranges from crying through to laughter regardless of the issue, is a process of elimination, starting with drink, food, pad change, temperature, injured, in pain and if so, where?

Usually if the feet are hurting they just stop walking, they can't tell us, can't just fiddle with their footwear themselves or point or lift their foot up to indicate something is wrong.

It's the only request we make of the staff, we appreciate all they do, we make the request not only for our eldest's benefit to maintain their mobility, but for the staffs benefit so they can attend activities, go for walks, visit places easier with a mobile adult, rather than having to push a wheel chair or have to lift from seat to car etc.

How do you deal with a NIMBY? (not in my backyard)

We've had some horrendous neighbours over the years, from the woman who built a brick wall on my land blocking access to my parking when we were selling the house (it was empty, we'd already moved) and the drug dealer over the road with domestic abuse, police raids and parking a bus in the cul de sac, to the half way housing over the road from us with fights and late night parties to the inconsiderate drunk and his mates breaking a door down at 2am in a communal block of flats where we own an apartment we bought when we were visiting the UK.

I'm sure with 5 kids we've caused upset to the neighbours with shouting, fights and kicking footballs and I know we've upset our neighbours with two sets of 'tenants from hell' over the past 10 years while we were living abroad.

But this post is about recent events with our daughters neighbours.

Our eldest child is 32, she is profoundly disabled and lives in a group home in Gloucester. She's been there 12 years, living with another resident and a 3rd on and off. It's a bungalow on a street, just like anywhere else and for the purposes of this, it's in a large cul de sac and the garden backs onto the M5.

We've had words with a neighbour opposite in the past about parking in front of their drive. Their definition of 'in front of their drive is opposite and half on the road, half on our daughters drive. They have a large, gated drive, for which they can turn around in, one car and we rarely see visitors when we go there. The road is more than wide enough to allow cars past if one is parked on the street.

But recently a 3rd resident has moved in, so more staff, more family visits, more cars. But the neighbours have decided to have a go over recent months and it's not been pleasant.

The staff and management informed us they've received letters through the door, neighbours calling round to complain about taxi's making the street look untidy and the noise from 2 of the residents, squealing and spoiling their ability to sit peacefully in their gardens. I'll remind you again that the gardens back onto the M5, you can hear the noise of the motorway through closed windows most days.

Life is hard enough with a disabled child. It's also NOT an easy decision to find 24/7 care for your disabled relative.

'how can you put a child in care?'

'just giving your child away'

'I'd never do that if it was mine'

Well until you walk in our shoes, you shouldn't judge and mostly these comments have come from people who actually have a disabled relative. We don't judge their reasons for keeping their adult child at home, often at the expense of other family members, for going a full nights sleep for the past 30 years, or holidays, or days out, or spending a day without being hit, or having curtains still hanging over the windows. Add to that physical age of parents of an adult child, the personal care needed. Even getting in and out of a car is a struggle for me alone and I know for a fact I would not be able to get her in the bath unaided.

We go to the supermarket, she spits, she grabs at others, she yells out, she will pull hair if you're too close, she'll try and sit on your lap if she's tired. We take her out together or with a friend or one of the other adult kids. We do our very best to minimise any disruption to other people. We avoid busy cafes, pubs, shops, tourist areas. We stick to supermarkets with level floors, good lighting, large cafes, decent toilets, we avoid getting in and out the car. We don't stop in the middle of the aisle to piss you off, we don't yell out for no reason.

As parents we have to try and work out what the problem is, she could be in pain, hungry, need her pad changing, just randomly happy. The floor colour could've changed and we've failed to notice and for her it could be a small step or a 1000ft drop. We just don't know.

We've had people tut loudly, ask us to 'do something about it' and once had a woman ram her with a trolley to try and shake her off holding on while I was unloading at the till.

In general though people are pleasant and helpful when asked, cafe staff will bring trays of food to us as queuing for her is difficult and she will grab at the food in a the blink of an eye. People will hold doors, help with steps if she's in her wheelchair. Kids will come over and ask questions and we tell the parents it's ok to ask. Occasionally someone will tell us, in a nice way that their neighbour/friend/family has one like this at home and they understand and tell us not to worry about the noise (we don't worry)

Mostly we get asked 'did we know before she was born?' my response is always whilst I'm not her birth mother, I've been 'mum' for 21 years and known her since she was 8, I often wonder if what people mean is 'if it was known she'd be like this, do you think she'd be here now?' I think I'll ask that in return next time.

Anyway, like I said 'life is hard enough' without the current situation at her home.

I firmly informed the neighbour who had a go about parking that she lacked compassion and was a throughly unpleasant woman and I hoped she never found herself in this situation with people like her as neighbours and if she wanted to complain further, I strongly suggest she complains to the council about the disabled people living in her street, who make a bit of noise now and then when they're enjoying their own garden that also backs onto the M5 on the few weeks the sun shines and whose staff members (on the minimum wage) use a taxi rather than walking home at 9.30pm as suggested by another neighbour or at least get their taxi ordered to the next street, so theirs doesn't look untidy.

I don't think this will be the end of it, another neighbour who was weeding by his front door, blatantly came out the front and was half heartedly weeding the drive when we arrived back and the neighbour opposite had enlisted support from someone else and they'd set up table and chairs in their driveway to stare at us on our return.

Have you ever experienced something like this? I'd love to hear from you if you have.

3rd - 5th September 2021 Post Comment Love

Welcome back to #PoCoLo a weekly linky hosted by myself and Stephanie from Lifeat139a.

We have a variety of posts linked up each week from personal stories to knitting patterns, fashion and hobbies. It makes for interesting reading and I'm loving the new friends I'm making through the blogging.

I can't believe it's September already, I think I say this every single month at how quickly this year is going.

Having decided to stay put in our family home and not move again, we've been getting quotes for the work needed and we want done in the house and the garden, trying to get builders though is harder.

The weather has been nice and we're outside as much as possible. We're out today with child 1, she is in her 30's now and lives in care home in Gloucester, we visit once a fortnight. It gets difficult taking her out and about with covid as she won't wear a mask and won't keep a hat/hood on, so if it's cold or raining we need to be indoors, same for food and drinks and getting access to toilets to change her.

You are invited to the Inlinkz link party!

Click here to enter

Visiting a relative in care during Covid

Our 13 month old grandchild smiles when they see us, says 'who that?' to people they recognise and responds to their granddads voice on video calls, interacts, shows him things when asked, blows kisses and waves goodbye at the end of the call.

Our 32 year old child who is in care does none of that.

They rarely make eye contact, don't respond to our voices, are unable to follow any instruction and shows no interest even in their reflection in a mirror or on a screen.

Keeping in touch with them is almost impossible. For the past 9+ years we've been living abroad and although I write and send gifts, it is mainly for the benefit of the staff to show them we are still here and interested in our child's life.

However the response is sparse. The staff aren't permitted to whatsapp us with updates on how they are doing or send photos, so we make expensive phone calls to be told, 'yeah they're ok'

There are many other issues in regards to communication like not being informed of medical appointments, but that's for another today.

Prior to moving abroad we visited weekly, had monthly over night stays in our own home, took them shopping, out for lunch, long walks and visited other family members.

Since moving abroad we've still been able to do that when we've been in the UK for visits, although due to the levels of disability and as we get older, there have been no over night stays. Sadly apart from the youngest child who is now 21, no other family members visit or phone to see how they are and rely on updates from us when we're in the UK.

Covid has been a strange time for us in regards to seeing our oldest child, we just haven't been able to, despite me having been in the UK since March and only 20 miles away.

I did a door step drop off visit in June and thankfully they'd just got back from a drive so I was able to say hello from a distance outside. They have poor eye sight and I although we can't confirm if they recognise our voice or not as there is no physical reaction, no turn of the head, no smile.

My husband was over in August and by then, after 2 weeks isolation, we were allowed a garden visit. But no touching, so we couldn't do anything other than walk round the garden and we left after half an hour. We couldn't bounce on the trampoline, take their arm and go for a walk, give a cuddle, anything that might prompt a response.

I made another drop off in September and was told I was allowed in, that was an easier visit, but wearing gloves and a mask and not touching anything meant again I only stayed a few minutes and left.

The government advice is no indoor visits and to communicate via video and telephone calls wherever possible. As this isn't possible I was informed I could have another house visit yesterday before I return to Dubai next month until February.

I'm not comfortable with indoor visits as it exposes me to risk from the virus with the care staff and the other resident. I've explained to management it's not just about me protecting them, so I arranged to go for a walk and asked if a member of staff could accompany me. They could assist our adult child physically and we could spend more time together. However the 2nd member of staff called in sick, so they were wrapped up, sat in their wheelchair and wearing gloves and a mask I just pushed them around the local neighbourhood for 30 mins.

No interaction, no face to face time, no benefit to them as it was cold and they were stuck in their wheelchair.

But I've done my bit, taken photos to show the family they are ok, had a video call with my husband so he can see our child and my visit has been noted and recorded in official records, so future carers will know there is family around even if they can't visit often.

A day out with a disabled adult child

We're fortunate as parents that our eldest child, child 1 lives in an excellent home with wonderful staff and management. Yes, we've had some issues along the way especially with me only being seen as her 'step mum' quite often, despite being her 'mum' now for 20 years and most of the time having more contact with her than the rest of the family, including my husband, due to the distance we live from her.

A while ago I found myself unable to take her out on my own, usually because I hire a small car which normally only has 2 doors and she's a bit of an escape artist when it comes to getting out of her seat belt. I'm also getting older and she's getting stronger.

Normally child 2 and 2a come with me when I visit, to open doors, help guide her with steps, carry her changing bag and assist with getting her in and out the car in narrow parking spaces. But 2 and 2a are having a baby later this year and child 1 is what we call 'a bit grabby' she also lashes out, no malicious intentions, but she can pack a punch.

Usually these days I just take her for a walk around her neighbourhood or turn up with cakes and drinks to enjoy with her in her own home. Sometimes it's tricky visiting her with certain members of staff on duty, but it's a lot less painful than taking her out on my own.

This is me and child 1 when we go out. Just like Andy and Lou in Little Britain, I have this image in my mind as I'm explaining what help I need. Click on the link below.

A trip out with child 1. BBC Little Britain with Matt Lucas and David Walliams. But unlike Andy, child 1 doesn't make my life difficult intentionally.

My journey as a parent and how it went.

Do I miss anything about parenting?

NO.

Seriously, I miss nothing about it, let me tell you why.

My time as a parent has come to an end. Obviously there are 5 adult children out there in the world who still have a mum, who may or may not want my advice, my input, to be part of their lives. But my responsibility for them has come to an end. They are responsible for their own actions, their own thoughts and their own feelings.

Just a quick background. Mother of 3, mother to 5. I'm not including the trials and tribulations of merging 2 families together, as all the kids consider themselves to be siblings and Peter and I are the parents as they refer to us. Also our eldest child is profoundly disabled and is in the full time care of Social Services, but we still have an active involvement in her life and decision making on her behalf. There are 10 years between the boys. They were toddlers and teens at the same time, we only ever had 3 teens at anyone time. Now they are 4 adult men.

2002 our one and only holiday as a family of 7, France.

Parenting isn't about stages and development, it's not a tick box for successfully getting through each stage and moving onto the next. All these stages slowly morph from one to the next, they run concurrently.

We spend a lot of time as parents in the first few years encouraging our children to move onto the next stage. We can't wait for our baby to sit up, start weening, crawl, move onto solids, talk, walk, sleep through the night, then start school.

Taking first steps, maybe better footwear would have helped.

Then as they reach every stage we look back and wish they were babies again. I guess this is why people want more than one child.

The ages 5-11 sort of just happen, they develop differently, they discover their interests, have their own personalities and as parents we tend not to give another thought about the next stage until it happens.

There's a newish word for the pre teenage years, tweens. I've never really got this stage, maybe it's because I have 4 boys, I do tend to find it's more something that parents of girls refer to more. With 4 boys I never really stopped to think about hormonal changes. Yes their voices got deeper, they started to shave, they started to inflict their presence on each other as equals and exercised their right to be the alpha male.

During the teenage years we want it to all stop. We realise they're growing up and turning into adults and one day they'll be leaving home. We look back on the earlier years and question if we could've done things differently, ask ourselves why they have to grow up, wish we'd not encouraged them to move at the speed they did, wish they were still little.

Life with a disabled child has been very different, milestones have still yet to be reached, despite her being 31 now. Milestones that will never be reached were acknowledged a long time ago. Different milestones were set, more realistic ones. Hopes and dreams for a profoundly disabled child are different. Getting through a day without wet clothes when your child is in their 30's is something to be celebrated, just as much as potty training the boys was.

So how did my journey as a parent go? Most of it just happened, the memory fades. the children feel like they've always been the age they are now. Yes we can recall individual challenges, achievements and first words, but if I'm honest a lot of it gets merged, it gets attributed to the wrong child.

Me, aged 20 with my first born. 27 years later, I'm grey.

Being pregnant:
I was never the material type, even now I look at other peoples babies and think 'there's nice' but I prefer them when they're a bit older and have a personality. I didn't enjoy and neither did I not like being pregnant, it was just something I went through. I have to consult the boys red books to tell you what day of the week and time they were born. I do remember the date and year though. There are no photo's of me pregnant, ever.

Giving Birth:
No one in their right mind enjoys the physical side of giving birth, but nature has a funny way of protecting us from the memory otherwise we'd never have more than one child.

Breast feeding:
Nope, didn't like it.

Teething:
It was just something we all went through.

Sleepless nights:
At both ends of the spectrum, as babies, then as teenagers, waiting for them to come home at 2am in the morning.

Playgroups:
OMG no, no, no.

Weening:
Fussy with what they'd eat one day, they wouldn't touch the next. However they ate anything and everything as a rule. We had a few food intolerances to deal with but in general they'd eat hummus, veg, fruit, fish. But as teens they lived off pot noodles, pizzas and what I call 'orange' and bland foods. Now as adults they've had the gaul to complain that I didn't cook tasty food.

No baby led weening here.

Yep, letting my baby have chocolate.

Potty training:
Just one big night mare, from poo droppings behind sofas and peeing against the bathroom walls.

A note by child 4 to remind himself to wipe his bum, it's framed and in the bathroom still.

Siblings:
They hated one another, they still don't really get on now. Arguments and physical fights over toys, who they shared a room with and how the others were always favoured over them.

School:
There were tears on the first day of school for the first child only for primary and secondary. It was a relief when the others went. School was a constant battle with being called in for at least one of boys on a monthly basis, fighting, not doing homework etc. Don't get me started on school fees either, we paid enough over the years to have purchased an average 4 bed house in the UK.

After school activities:
No, no, no. I hated the amount of time I spent driving, the organisation and timing of activities. Standing for hours on end in the middle of a field while they played football usually in the rain. The cost of gym, music lessons, horse riding etc, all the activities they insisted they take part in then wanted to drop just after I'd paid a terms fees.

Teenage years:
See siblings. They just happened, we didn't survive them, we just got through them, of course we did we can't stop the ageing process.

Leaving home:
This was tough, but inevitable. For us though it was a bit different than it is for most parents. Our eldest left home aged 12 to go into care, the next, aged 18, joined the army, within a year he was posted in Germany. The next one, also aged 18, left home and 3 months later we moved 6000 miles away to South Africa. Our youngest left home next, aged 13, to return to the UK for boarding school and the last one left home aged 20.
As each child left home, the others filled the gap, it didn't get easier because we were down in numbers, it just changed. There was more time for homework, activities, but meals still had to be cooked, washing and ironing done, school runs and breaking up fights.
We weren't around to support any of our children into adulthood, it wasn't a gentle break for any of us, it was an arm ripping off moment each time.

Empty nest:
We moved to Dubai the same time our last child left home in 2014, the youngest two returned to South Africa to say their goodbyes and to physically move with us, although they returned to the UK within a few weeks. Moving countries is stressful in its own right and while I was grateful to not have to sort out schools, negotiate traffic on school runs on the wrong side of the road, helping them make new friends and finding activities for them to join in with, I was incredibly isolated and lonely.
I'm over empty nest now, but I do wonder what the future holds for us in regards to our relationships with our adult children as they begin their own journey into marriage and parenthood.

You'll notice I have more to say about leaving home and empty nest and this is because they happened more recently, they're fresher in my mind. They were recent events, I've not done much since the kids left home, I did return to teaching for a year which contributed to filling my days and I had the death of my father and health issues to deal with over the following 2+ years.

When we all get together, which is rare as a family of 7, with our chosen homes, the last time was for the youngest's 18th birthday in 2017, we talk about the fun times, the memories that make us smile, the holidays, the time we lost the children and the day we went on holiday only realising we'd locked one of the children in the house and left them behind was one another child asked where they were.

At the end of the day we can't stop the process or even slow it down, parenting just happens. Sometimes we need the support of the wider family, teachers, doctors and other professionals.

Most of the time we can't stop or change what our children go through, they develop at their own rate, we can't fix a friendship, stop the bullying, mend a broken heart, get better grades or even have a great deal of influence over their lives as they become adults. We're just there to support them however we feel best at the time. We will have regrets, we will have issues. I know I do.

Please note: ALL this was done without the internet and there aren't many photo's to prove it.

What are age appropriate toys when you have Special Needs?

This is my almost 30 year old step daughter, she has multiple special needs and physical difficulties. She does not communicate verbally or with PECS (Picture Exchange). She does not respond well to hand over hand activities, anything and everything will be put in her mouth, sand gets rubbed in her eyes, paint would be smeared around, play dough eaten and water trays would be emptied all over her and she really does not cooperate with a clean up process.

She needs 24/7 supervision and full support to do everything. Dressing, feeding, going to bed, getting up, toileting, finances etc.

She lives in a care home with one other woman and full time care staff, she attends physio, horse riding, swimming. Has visits from the Occupational Therapist, has trips into town for cake and lunch, enjoys visits to the supermarket, walks and trips out in the car.

A full and busy life, but there is lots of time when she is in her home, she has access to a sensory room, but due to their being a ridge to access and another service user and often only 1 staff member she rarely uses it and if the staff member is in the kitchen managing paper work or cooking she will stand and watch, but once they have to do something else, she wanders back to her room, where she favours and just sits for hours on her bed.

The staff are unable to restrict access to her room, they're also unable to encourage/make her stay in the sensory room. They are also unable to lift her off the floor or move her manually into another room.

She receives a lot of 1:1 time and care, but does not entertain herself, she will follow you from room to room and if you're busy will just wander off back to her room, she doesn't seek out activities or toys, you have to keep her supplied with items that light up, make a noise and have a sensory feel to them. They have to be indestructible, sturdy, but not too sturdy that they won't hurt you when after she's put it in her mouth she throws them across the room.

She doesn't stack things, sort things, work out that if she pushes a button, there's a reaction, she just shakes it, tastes it and lobs it.

This makes it difficult to find things that she can entertain herself with. She has access to a ball pool, a water filled floor mattress, there are fibre optics in the room and cushions and soft toys. I introduced a CD player to the room on the weekend and suggested furniture was moved and that the staff member did their paperwork in the room to encourage her and the other service user to stay in the room, which they did.

I then went out shopping for some new toys. I was faced with a limited selection. I tried several shops, too many toys were unsuitable, small parts, too sturdy and likely to cause others damage, too many small parts that could be swallowed, too flimsy and could be ripped apart.
I usually end up buying her baby rattles and musical instruments, but they're made from plastic or wood and after being biffed several times, which really hurts, I'm always on the look out for alternatives.

It would be nice to buy toys for her that were a bit more age appropriate, toys that weren't manufactured for babies or had peppa pig or paw patrol on them, regardless of the fact that doesn't register with her anyway.

This is what I've come up with so far from Asda, The Range and The Works. Total spent £18. I'm still looking out for some stretchy toys, handheld stress balls, solid enough not to hurt anyone, but not too soft to be bitten into and more toys that light up or make a noise when shaken, so if you know where I can get these from, please let me know.

Disabled toilets in the UK - JD Wetherspoon, I'm talking to you.

Whilst I appreciate there is a lack of space in older buildings and disabilities vary from wheelchair users to those who are mobile and those with hidden disabilities, there is no excuse for the toilets and facilities to be so dirty.

A disabled person has the right to use public toilets like everyone else, but for someone with a disability toilets are often needed fast and in many places they are shared with the baby changing units, meaning long waits and as they tend to be on the ground floor in public buildings, they are often locked requiring the user to go and fetch the key before they can gain entry.

Our 29 year old daughter is profoundly disabled, she can walk short distances, but wears nappies and requires changing in the upright position fortunately, I have no idea how people manage when they are out if their family member needs changing in their chair as the baby changing units won't support heavier weights.

If I'm out with our daughter on my own, I too need to use the disabled toilet as I cannot leave her outside a public cubicle or even ask a member of the public to keep an eye on her, as she can lash out without warning and left unattended will wander off and is a danger to herself.

When our daughter needs to be changed, I need a clean toilet with running water, soap, toilet paper, a sink big enough to wash my hands in, something to dry my hands on, a shelf to put her bag on and more importantly a clean floor that I often have to kneel on whilst changing her.

Disposable gloves would be too much to ask for.

What I found on my last visit to the UK was over flowing nappy and sanitary bins, that were dirty, where foot pedals didn't work, broken changing tables, emergency pull cords that were hanging over the sink, lack of rails for our daughter to support herself with when standing, no soap, broken hand dryers and taps that didn't work. I opted not to take photo's of over flowing bins.

This tap didn't work and there was no soap, I was unable to take my daughter to the upstairs toilets so I could wash my hands after changing a full nappy full of faeces and I had to use baby wipes only before eating my meal and feeding her.

I complained in every place I visited where the toilets were as above, but the staff weren't interested and I didn't have time to wait for the toilet to be cleaned, which obviously wasn't an option anyway. I congratulated the staff at the Cafe Nero in Monmouth for keeping their toilets spotless. Sadly this was not a toilet I visited with my daughter, I just popped my head in to see how toilets varied from place to place.

The toilet in Costa Coffee in Monmouth.

It's not difficult to keep a toilet cleaned and well stocked, life is hard enough with a disabled adult child as it is, without all this.

JD Wetherspoon in Gloucester, you really need to up your game, we won't be visiting there again and I doubt the staff passed on my complaint to anyone either. Sadly it wasn't just the Gloucester branch. We tend to take our daughter to your establishments as the food is prepared quickly and brought to the table, but the lack of empathy from the staff leaves a lot to be desired when I ask for table service as I can't take my daughter to stand at the bar and manage her and drinks back to the table.

The supermarkets don't fare much better in Gloucester in regards to cleanliness but staff are far more helpful and will help when asked.

Coping with a disabled adult child.

It's been 6 months since I last saw my step daughter, child 1 of 5. I live in Dubai, she lives in a care home in Gloucester.

The teen, child 5 of 5, and I took her out on Friday for the afternoon. Nothing too adventurous, a trip to the local supermarket, for lunch and a bit of shopping.

We were both shattered and badly bruised. Despite the teens best efforts, she managed to reach out and jab me in the ribs while I was driving, I received an elbow in the chest and a punch to the stomach. She rammed everyone and everything with the trolley, grabbed hold of other peoples trolleys as they walked past and actually went off with one woman. The glass spice jars narrowly escaped crashing to the floor, she refused to eat her lunch and lobbed her drinks bottle across the café.

We weren't out long enough to battle a nappy change, thankfully. The staff in the café exclaimed 'ooh she's not usually this lively, are you new members of staff?'

3 hours, that was all and we were both physically and mentally shattered.

We're visiting again tomorrow, we've decided to stay and play with her in her own home and take her for a walk around the neighbourhood.

As much as I'm getting older and find it difficult to get her in and out the car, the kids are all adults now, over 6ft tall and more than willing to help mum with their sister and spend time with her, but I don't allow them to do any of her personal care, apart from helping with outer clothing and shoes on and off. Sadly I think the last time I ever take her out on my own has now been and gone.

It's not easy admitting you can't cope any more, difficult to admit to yourself, battling with self imposed guilt that you can no longer take her days out on your own, and just a simple trip is hard work.

Peter is joining me in the UK in 2 weeks time, so we'll try again, no agenda, just keep it local and simple and keep the visits short and try not to feel guilty about being able to do more.

Planning a trip with a disabled young adult.

Our eldest child is in care in the UK, we now live in Dubai. We are getting older, she is getting harder to deal with.

I visit the UK several times a year and take her for days out or a few hours, rather than visit her in her home where she just does her own thing and I'm left staring at the walls or chatting to the care staff. I do this at the beginning, several times in the middle of my stay and at the end of my trip, depending on the length of my stay, anything between a 1-8 weeks.

Going out involves packing and carrying an adult sized baby bag, making sure I've hired a car big enough for her wheel chair, choosing somewhere to go based on the weather and her toilet changing needs, somewhere that sells food and drink and somewhere where I can hopefully get a bit of help. I try to coincide her visits with taking one of the other 4 kids with me and although they come with me willingly and do more to help their sister than I could possibly expect from them, it adds to the length of my day by collecting and dropping them off. I'm worn out at the end of the day.

We usually end up spending our days out visiting different supermarkets, we've been doing this since 2011.

Over the past 6 years we've not had a base where we can take her and usually her father and I make separate visits to the UK. She doesn't sit well in a car and has crawled out her seat belt before so longer trips to visit the inlays or take her back to my parents house for the day/afternoon are out of the question when you have to be driver, carer and support all rolled into one whilst driving up and down the M5.

Then there is getting her in and out the car, changing her nappies in the bathroom, dragging the supermarket trolley around with her pushing in the opposite direction. Trying to manage a tray with food, a queue and just having to clear the table and make sure nothing in front or behind her is in her reach is mentally exhausting, she just never stops.

Visiting family and friends, even with support is hard work, she has a habit of grabbing peoples hair, she spits excessively and will wipe her hands on you, your walls and soft furnishings, she grabs things, would swipe ornaments off a shelf and has a habit of throwing things and hitting you with objects in her hand. It's not fair on other people whether they are family or not.

We've bought an apartment now, but it's 40 miles from where she lives, it's also on the second floor, due to us leaving it empty most of the year and although she can climb steps with support, I can't then leave her unsupervised in the apartment while I run up and down the stairs to get her changing and over night bag.

My family live near by so I can arrange for them to meet me there and either a) supervise her for very short periods of time or b) they can do the running back and forth to get her bags out the car.

Then there is getting her in and out the bath, getting her used to sleeping in a new room, getting some sleep myself.

The town we will be staying in is old, with narrow streets and restricted access, with steep steps into  a lot shops as the pavements are too narrow to install ramps and while people will help, I just get fed up and tired of explaining and then when we get in the shop, despite strapping her in her wheel chair she has quite an extended reach and you need eyes in the back of your head.

So on my next trip, I'll just stick with days out to the local supermarkets and wait for Peter to join me over Easter, so we can have here at home for a night or two for the first time in 6 years, just because we want to.

Managing emotions when your chid is in care.

Disclaimer: Although I make references to 'our daughter' I am her step mother and have been since I met her Father in 1999. I consider her and her brother, referred to children 1 & 2 of 5, as my family. In the same way my husband considers children 3, 4 & 5 as part of his. The children refer to us as their parents and their siblings as just that. The children were 1, 5, 7, 10 & 11 years of age when we blended our 2 families.

In February 2016 I wrote a blog post about our adult daughter being in care and the self imposed guilt we feel about living thousands of miles away, you can read the post here. It was featured on Mumsnet Blog of the day and there were some lovely comments from people in similar situations on both the blog post and Mumsnet forums. In October Mumsnet contacted me to write a follow on piece for their forum, but due to disability and special needs being fiercely debateD in several forums after the BBC documentary featuring Sally Phillips, it was shelved and I forgot all about it.

I decided to post the piece I wrote for Mumsnet after receiving an email in February a year on from the original post about implementing a new assessment for our daughter, an assessment we were not asked to take part in by her care home and there are many errors in the assessment that are relevant to the original post that need addressing. Most of the content isn't relevant to our daughters day to day care, it's the historical information that is incorrect, such as her father only visiting once a year, us moving to Dubai after she went into care and no mention of the fact that from 2000 -2011 the year she went into care and the year we left the UK, that she stayed at the family home with us and her siblings almost every weekend.

It is important to us that this is corrected. It happens every time there are new management, social workers, owners of her care home and we sent similar emails and correspondence in 2013 and 2014 when this happened last. Surely her personal information should remain the same, just with an update on the previous year.

For the past 16 years, our daughter has been in care. She is now 28.

She lives with another disabled young woman and requires 24/7 care - the same kind you need to give a baby or toddler.

She is profoundly disabled and wears nappies. She can feed herself with a spoon if the food is chopped up, and can drink unaided out of a sippy cup. She has no form of communication and doesn't make eye contact, so if she is unwell, uncomfortable or in pain, we must use a process of elimination to work out what is wrong. She may laugh hysterically, cry or stay quiet. There is no pattern to her behavior.

My husband and I now live in Dubai. Putting a child into care was hard; moving thousands of miles away was even harder. People sometimes suggest that by moving abroad we no longer care about her, but that isn’t the case at all.

Our daughter has no concept that we are so far away. Her life carries on without a second thought for us - she doesn’t realise that she only actually sees us for a few weeks every year. She recognises us only by our routines with her when we visit. Our photos are on her wall, but we don't believe she knows what she is looking at.

Prior to leaving the UK in 2011, we had her home every weekend and went to see her once a week. We felt welcomed visiting her and our other children would play with her in the garden as if they were in their own home.

However, we had to manage these visits carefully - seeing other friends and family with her was difficult, as she has a tendency to grab hair and clothes and has no awareness of personal space or danger. She’s active and needs space to roam about, but she walks unsteadily and falls easily.

Since moving abroad, we try to keep in contact by sending post and emails, but we rarely receive a reply from the people caring for her. There is a constant turnover of staff, and there is little time for them to be briefed on her history and family background. Although we can’t fault the care she receives, we often feel our concerns and efforts are dismissed - it seems her carers assume we have abandoned her.

This can be difficult to cope with. When I last called to wish our daughter a happy birthday, the person who answered had no interest in talking to me, although I tried to find out details about how she was. I used to work in care and I know the kind of assumptions that are made about families who don’t visit regularly; it’s difficult knowing that these are being made about you, and being powerless to stop it. We feel guilty about the situation, but we also know it’s best for our family.

We’ve had to make these kinds of difficult choices throughout our daughter’s life. We also have four sons, and when they were younger we made the decision to go on holiday without her. Family days out always took an enormous amount of organisation; the boys were often restricted by their sister’s needs. In the end, we decided that their need for individual time and attention outweighed the guilt we felt at leaving our daughter behind.

After 16 years of navigating the care system, we no longer have the desire or energy to constantly justify our relationship with our daughter. We also know that as time passes and we age, we will be able to do less for her: we’re already finding it harder to get her in and out of the car and change her nappy. We have a lovely time taking her out and spending time with her when we visit, but we wouldn’t be able to cope with her day-to-day care. While we’ll always feel guilty that we’re not with her on a daily basis, we’ll always feel relief when we drop her back at her home at the end of our visit. 

We need our daughters record to be accurate and reflect our relationship with her and her extended family. There have already been occasions where I've turned up to visit and I've had to justify my relationship with her as the staff haven't met me before and aren't aware of her relationship with me.

Mummy Times Two