Tuesday, 4 April 2017

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.




33 comments:

  1. Thank you for sharing this post. It can't be easy, please don't feel guilty. I'm sure your daughter enjoys spending time with you whatever you do and wherever you go. Keep things simple and enjoy quality time. #Triumphanttales

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    1. we did take her out again and the teen joined her and staff for horse riding on Friday

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  2. I can't even imagine the struggles you must go through. Fingers crossed the walk in the park creates a relaxing vibe for both of you.

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    1. we had a much better visit with her in her own home

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  3. I can't even imagine how mentally and physically tiring it is. Having worked with people with disabilities in the past I know how challenging it can be! Thank you for sharing #triumphanttales

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    1. when we had her every weekend, it was easier, she knew us and the routine, but now with it only being a few times a year we tend to forget how difficult it is

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  4. Thank you for sharing this post with us all. Having spent a few years with my stepsister growing up who is also disabled, I only know too well to the hardships the parents face. Do not feel guilty. You are doing your best and I'm sure your daughter appreciates everything you do for her.
    Thank you for joining us again at #TriumphantTales

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    1. thank you, we really couldn't do it without the support of her siblings

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  5. As others have said before: I can't begin to imagine how difficult, exhausting & challenging this all must be for you and the rest of the family! You truly seem to be amazing coping with all of this.
    #PoCoLo

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    1. thank you, it's certainly not an easy day out when we try to go anywhere

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  6. Local sounds good. It's time together that is important. #PoCoLo

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    1. yes, you're right we don't have to go far to spend time with her

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  7. I'm always amazed at how physically strong and determined disabled adult childs can be when they put their mind to something. Previous neighbours also coped remarkably well, in ways most people never imagine and I'm full of admiration. Hope the next visit is less shattering. Thanks for sharing with #PoCoLo

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    1. yes, future visits were less stressful when we lowered her expectations

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  8. I'm always amazed at how physically strong and determined disabled adult childs can be when they put their mind to something. Previous neighbours also coped remarkably well, in ways most people never imagine and I'm full of admiration. Hope the next visit is less shattering. Thanks for sharing with #PoCoLo

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  9. It sounds like it is quite a challenge. Don't feel guilty.
    I hope the next visit is better for you x
    #PoCoLo

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  10. I think as humans who feel compassion by default, it's always on our mind that we don't do enough, don't manage enough and we criticise ourselves for it. It's so difficult and you did really well. I hope the next visit goes well X #PoCoLo

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    1. thank you, we want to spend as much time with her as possible but also not kill ourselves in the process

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  11. You are doing amazingly. Some wouldn't cope as well as you do. Thank you for sharing this with #TriumphantTales, please do come back next week.

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    1. thank you, we do have friends who don't cope at all with their children now they're adults

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  12. Suzanne, I couldn't not comment, I just wanted to tell you that you are doing a fantastic job, we all beat ourselves up with guilt but you coped fantastically. #spectrumsunday

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  13. Suzanne, no guilt necessary - you are doing amazingly and I'm sure visits in your step-daughters own surroundings are as worthwhile as taking her out. You are there and that is the most important thing. Nicky x #TweensTeensBeyond

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    1. yes, you're right it's quality not quantity

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  14. This sounds like a terribly challenging situation and you coped brilliantly. You do not need to feel guilty, you have made a sensible decision to ensure everyone's safety. I hope that your next visit with your step daughter is less stressful. Thanks so much for joining us at #TweensTeensBeyond

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    1. thank you, it was much more enjoyable when we visited her in her own home

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  15. Suzanne the most important thing is that you are there for her and she knows that. It is very easy to place unrealistic expectations upon ourselves sometimes and really the simplest activities are those that reap the greatest reward. I hope you have a successful day together on your next visit with your husband. Thanks for sharing this with us. #TweensTeensBeyond

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    1. it was much more successful with my husband there, we could share the work, i don't like to put on her siblings

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  16. There is no reason to feel guilty. You're doing the best you can. Just being there is good enough. Anything beyond that is a bonus. And there is nothing wrong with expecting grown children to help with a memeber of the family. It's good for all of them to spend time together and develop bonds. #PoCoLo

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    1. oh the kids love their sister, but i don't want them to feel that she is their responsibility

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  17. Like everyone has said you have absolutely no reason to feel guilty, but of course as a mother we instinctively do. About everything. I hope you do get to enjoy more outings with your daughter. xx

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    1. no, we can't help ourselves can we

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