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.

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.

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