How are you coping at the moment with this new way of life? as we carefully keep our distance from those that we really want to just fling our arms around and hug. Today in England it is warm, bright and sunny so the day is passing fairly pleasantly for me, but my son Simon is finding it all very difficult to deal with.
For those of you who follow my blog you will know that Simon has, what we call between us, ‘A few little problems.com’, (in medical terms he has mild athetoid cerebral palsy and learning difficulties, along with dystonia) but that is quite a mouthful, so we stick with our little phrase.
For the past 2 years Simon has been living in a supported living complex and has been doing amazingly well, but the restrictions that COVID-19 had placed him under proved too difficult for him to comprehend. Loosing all his weekly trips out, and being confined for most of the day to his flat, alone, was just too much. As is often the case for Simon when faced with a situation that is causing distress, it is not safe for him to be alone, so he is back at home living with mum for the time being.
I wanted to write this blog just to raise a little awareness for all the parents who are in a similar situation. Im quite sure that I’m not the only one. Independant Living is all well and good, but there is a fine line between being able to live independantly and not. It only takes something like this horrible virus for us to cross that line and have to do a U turn and a rethink to adjust life, in order to keep Simon in as safe a place as possible, both for his physical and mental well being.
We are at least in the middle of some beautiful countryside so fresh air is in abundance, but the days are long and my thoughts go out to those who do not have the space that we have, but who are having to deal with similar situations. The lack of stimulation and routine is hard for many of us, but for those in similar situations and conditions to Simon it is incredibly difficult to fill endless hours with very little.
I heard him muttering under his breath today that he “was fed up with all this corona virus “s**t” (please excuse the language). I quietly thought to myself that I was fed up of trying to explain it on a daily basis in as easy a way as possible for him to understand! Im sure I’m not alone in those feelings as many parents of children or adults with special needs will be feeling the same frustration. As well as many parents of children without the additional needs. It makes me thankful for uncondtitional love which is what gets us through.
I take my hat off to you all, and wish you the strength and courage you need to get through this difficult time with those you care for. I hope you all stay well and healthy, and that we all get through this difficult time and soon come out the other side. Hopefully stronger and more thankful for the daily pleasures and routines that we may too often take for granted.
Stay Well
Love Alison x
Through rose tinted glasses. 
Good luck Alison, you are a very caring mother. Lucky the weather is sunny so you can get outside, would be a real pain, I imagine if it rained every day. My best to Simon. Can he handle a computer, iPad for games etc?
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Hopefully the sunshine will continue Len. It lifts all our spirits! and yes rain every day would make life much more difficult. Simon loves You Tube and listens to music and watches music videos but his attention span is limited. He can be a joy to be with but also a lot of patience is needed.
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Alison, I am happy to read your post, it reminded me that there are so many people going through so much more. I am well and because I already live a limited life with a vehicle, I have created a life that is busy and enjoyable. While there is a high level of fear and frustration globally, my mainstays are faith and one of appreciation. With so many unknowns and projections made every day, I seek ways to fill my mind and time with a variety of ordinary and positive activities that I can. My sister is married to a man that has bipolar disease, so they live in the country and an isolated life. She has created a life around activities that are a big help her difficult situation, there is a very large garden being prepared now for their growing season and plenty of land for enjoying the outdoors. So what you’ve done for Simon is wonderful, you’re very blessed to live in such a beautiful location with plenty of space for him to spend outside. Wishing you and your family continued health. xo
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I meant to say without a vehicle, sorry for the miscommunication.
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Ah thanks for that message Laura. It must be difficult without a car but filling our time with positive things is the best we can do. Thats Simons difficulty really is the ability to fill his time with things that benefit him. At least as a family we all know he is safe while he is with me. Take care and stay well x
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I’m struggling too, I like routines and breaking them distresses me. I understand why it has to be broken and that normality is not going to be any time soon. But understanding it and getting my mind and thoughts to accept it are totally different.
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Hi, Im sure you understand Simons difficulties. Im sorry I havent been visiting you blog, I will pop over and have a read soon. Yes its all very difficult to comprehend and we all take different amounts of time to accept what is going on. Stay well x
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No worries, hope you both are well too
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You made me realize what my sister is having to deal with concerning her two daughters with Down Syndrome. I’m forwarding her a copy via my email. Thanks so much for this message. Hang in there! This, too, shall pass . . . though it tarry . . .
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Gosh that must be really challenging, I cant imagine having two Simons to cope with. What a brave lady she must be. I hope she is well supported. Im really glad you appreciated the blog, take care x
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I will take him on a easter bunny chocolate hunt on Sunday morning. X
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I think he might be a bit old for that Mark but some chocolate would probably go down well!
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Alison, My heart goes out to you and Simon and all families who have problems similar to Simon’s. These times are hard and I pray for us all. I find the silliest challenges every day, like my email slowed to a halt because I had too much stored in my filing cabinet. It is better now but I can’t respond to other bloggers when their posts come to me by email. I have discovered the Reader works just fine. I am grateful for my small problems.
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Thankyou for your kind words. Its certainly time to notice the small things. I guess we all have difficulties to overcome. Hope your family are all keeping well .
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My sons and their families are doing well. Thanks for asking.
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Humbling post, Alison and I thank you for sharing this with us. As tough as we think we have it being in ‘lockdown’, there are many folks struggling even on a good day for which this situation is almost untenable. My heart and good wishes go out to you.
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Thank you Eliza. Im thankful for the lovely surroundings I have which especially on a sunny day make life easier. I know there will be parents in much tougher situations and so many individuals who wont have the family support that Simon always has. Thoughts are with you and your family too .
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Very humbling post and gives me for one a sharp slap around the chops. You’re a super star. It must be hard and I admire you for this. Enjoy the fresh air and sunshine and take pleasure in those little simple things together. Katie xx
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Dont slap yourself too hard. I know that where you are things are very difficult too. Thankyou for the encouragement though it really means a lot to me. Its great that we can be a positive influence on each other even though there is so much distance between us all.
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Sending love to you … 💕
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❤
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For most people the pandemic is bothersome and worrying, yes, but we’ll manage. But for many it really changes their lives in a way that is not possible to imagine, particularly those who might not quite grasp what is happening. Thank you for reminding us of for being grateful even when the world is in dire straits, but also to think of those who more than ever need our compassion.
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Thank you Otto for your kind words. It is a hard time for all but I can only imagine from my own experience with Simon how many will be in incredibly difficult situations. Wishing you health as we all travel through these difficulties.
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Thank you for your wise thoughts.
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Oh, poor Simon. You must be finding this very hard too as a result Alison. Sending you both a big virtual hug. My wife popped by her workplace today and her employers, who live on site, have two little girls who are very close to Susan but were unable to give her a hug today and could not understand why. Molly the dog could not be restrained however..
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Thanks Darren. Thankfully most of the time I get on well with Simon but he gets incredibly restless. Its just a constant lesson in patience. We will all certainly appreciate the freedom to hug those we love when we are able to get together again.
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An important reminder for all of us. Thank you Alison. And I do agree with Simon’s analysis.
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Thanks Gary. I thought when i was writing it that you would come along side him on that. He doesnt hold back on his expression of how he feels. Have a Good easter weekend 😊
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You were right! Happy Easter to you and yours!
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It is such a difficult thing and I, too, am glad for space, some room to breathe and beautiful views. Best of luck to you both.
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Yes we are very lucky to be in lovely surroundings at a time like this. Keep well x
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My heart goes out to you and Simon, Alison. It has been so surreal and the effect is different for everyone. I am on the verge of blogging again after over a year. Can’t believe it’s been that long. And now we’re living in this pandemic that none of us would’ve given much thought to happening in our future. My family and I are fine, working from home, and lucky with no loss of job, only some hours have been cut, which is doable for now. Because we’re all still working, our days are still busy, but we’re also taking the time to get other things done and enjoy nature and the time together. I miss my daughter and her fiance in TN, but they’re doing fine, too. I talk to her and text often and that calms the worrying. One day at a time. Anyway, thank you for sharing your story and I pray that Simon will be okay.
~Lauren ❤
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Thankyou so much Lauren and so good to see you back on here or nearly again. I can truthfully say that I missed you. I do hope that your year away has been beneficial and really look forward to reading your posts again. Simon is having good and bad days, he doesnt occupy himself very easily so difficult when he is out of his own surroundings. It is however beautiful here and lots of long walks are a tonic.
Love Alison x
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You sound like a fabulous mum Alison, thanks for sharing your situation, it certainly does help and inspire others.
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Thankyou for your lovely comment and for visiting my blog. Lovely to wake up in the morning and feel encouraged from the other side of the world.
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