The last two years have been a blur given we have been through a pandemic that hit in March 2020 a few days before my youngest son's 10th birthday which was on 23rd March, 2020. I had to cancel his birthday party which he really wasn't bothered about in any case so was I was quite glad to be spared another party especially as the year before he had a video game party van that turned up and all the boys loved it and the girls really couldn't stand it. So we had to get my nail varnish out and turn it into a pampering day with manicures and hand massages for the girls with spa music and video game hell for the boys in a smelly large lorry/van. That was a true experiment in gender stereotyping and while the boys were finally charging around the garden wired up after an hour of video game playing, the girls were quietly indoors enjoying the peace away from the charged up boys. I diverse....
10 Positives of Lockdown
1) Not having to host kids parties. I have never really enjoyed hosting kids parties so that was a real positive of lockdown to be spared two years of kids parties including having to host stray parents who surprisingly want to stay at the party with their child (I have always wanted to leave my children and run away very swiftly at any party they are lucky enough to be invited to although in Joel's case I always had to stay...)
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| Lockdown birthday for second year in a row, Max turning 11 |
2) More family time together and more meals together, no commuting to work. Working from home.
3) Appreciating any type of food delivered to the house especially coffee and flour at one point oh and making Irish soda bread for the first time
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| Irish soda bread gluten free too! |
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| Home grown lockdown rhubarb |
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| My brother Gavin's 50th in December 2020 spent outside having takeaway curry and cake. |
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| Just about all in the photo on a lockdown walk |
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| Lockdown cooking |
4) Discovering more walks
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| More walks in Sussex |
5) Doing daily workouts with Joe Wicks
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| This was Friday Fancy Dress with Joe...with a Pokemon and I think I am trying to be in 80s gear |
6) Discovering hair clippers and cutting hair and deciding I could be the next Nicky Clark
7) Discovering Disney Plus for the kids. Screen time rules went out the window. Embraced Netflix, Prime Video and Sky too.
8) Saving the planet by not driving much, not flying abroad for a holiday and embracing the Staycation and not shopping for clothes...dressed pretty much in exercise gear for two years....
9) Not having to come up with any excuse to be anti social and not having lots of appointments....bliss
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| Staycation in Cornwall |
10 Negatives of Lockdown
1) Being a teacher, mother, wife, dinner lady, freelancer, cook for breakfast, lunch and supper, medical specialist, kid psychologist, hairdresser, cleaner, launderette service and general motivator
2) More family time together and more meals together
3) Cooking breakfast, lunch and supper....did I say that? Who cares about Irish soda bread pics!!!!
4) Discovering more walks...really? Can't we just go to Spain? I hear myself thinking...
5) Doing daily workouts with Joel Wicks I switched to workouts with Rosie who didn't speak as got tired of answering Geography questions with Joe and he does like to talk.
6) Making my children look like 1970s kids with really dodgy pudding bowl haircuts.
7) Watching the Daily News updates which eerily sounded like the theme tune to Hunger Games which I finally switched off
8) Not flying abroad and going on a Staycation to Cornwall with the rest of Britain. Holly missing her French trip abroad. Finally loosing any dress sense I ever had and resorting to t shirts and gym wear on most days
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| Joel and Jake on staycation year two of pandemic 2021 |
9) Lockdown zoom parties (I didn't manage to avoid the adult parties)I love seeing people in person not over zoom. I also don't drink so while people can get more sozzled to handle the whole situation I am sipping on tea
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| New lockdown outdoor furniture to create a new 'living area' |
10) Gardening, weeding and thinking my garden is going to look like Monty Dons. Got so over zealous in the beginning making pots of garlic plant that I thought would be like pesto but turned out pretty bad...
I diverse....What was it like for Joel? He surprisingly was really chilled during lockdown and even though we couldn't see him for about 6-8 weeks we facetimed him lots and his lovely children's residential was a safe haven with a huge garden he played in and enjoyed being King of his Castle in his lovely big house that he only shared with one other girl Hannah. Joel could finally come and visit us every Saturday after the initial no contact when the world seemed to stop for a bit. Thankfully we have a pool that Joel was in every Saturday over the summer and think we opened it at the beginning of April 2020 for the summer season so the kids had this luxury and we didn't take it for granted knowing we were blessed to have the outdoor space to enjoy through this somewhat tedious time. Joel has been through numerous 'licking' phases where he likes to like floors, lamp posts and other covid friendly surfaces and of course this behaviour didn't stop through the pandemic but I like to think his defences were strong for this reason and although Joel had covid in November 2021 he thankfully didn't have bad symptoms.
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| Lockdown laughs on the trampoline (Joel is the other side of Jake) |
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| Joel contemplating another lockdown walk... |
So although Joel was in his safe haven children's residential home up until his 18th birthday, we were told he would have to leave bang on his birthday - 30th July 2021to join an adult residential and because of lockdown it was pretty impossible to see any homes for most of 2021 and most were unsuitable in any case. We finally found somewhere that didn't have senior disabled people (yes it does happen that suddenly an 18 year old disabled young adult can be put in with a 60 plus disabled adult) but a residential with young adults. It was also near home which we are very adamant about and also close to his wonderful school as he has a place at the college there next year which goes up to the age of 23 (although on paper it says 25 most only get the funding to age 23).
What I hadn't expected was the total lack of services beyond 18 and how Joel lost every single specialist doctor he had overnight. He turned 18 and was suddenly responsible for paying for some of his residential care and I was responsible for filling in forms for his Universal Credit that was vaguely told to me by the care manager of his new home. There is no guide book for this and no social worker had sat me down and told me what I needed to do or what to expect. This hasn't surprised me as most of my life with Joel has been about finding things out for myself and through other parents or by hiring specialists like educational psychologists to tell me where Joel should go to school for example. No one ever sits me down and explains anything. It just happens that you hear terms like 'lacks mental capacity' and 'best interests meeting' and 'he will need Continuous healthcare'.... you have to piece together this double Dutch language and jot down some of the jargon and then refer back once it slowly clicks in.
Basically Joel turned 18 and I had no more parental say over his life. This was now down to 'best interest' meetings where a bunch of professionals to talk about Joel who don't know Joel like I do and then decide what's in his best interest. Thankfully my viewpoint and Jake's viewpoint were taken into consideration recently when we had a best interests meeting about Joel's health but it seems a long winded way of doing things now. Also no one talks about funding and what the best direction to go down for Joel would be - via social care or NHS Continuing Healthcare. Currently we are applying for Joel to have Continuous Healthcare as he has very complex needs and before he was 18 he also had a list of NHS specialists that have been dropped even though his needs are still the same.
Because we want to have the final say over Joel's healthcare, wellbeing and finance we now have to apply to be Joel's Duputy - this is for people who lack mental capacity and the equivalent of Power of Attorney (for those who don't lack capacity they can allot a Power of Attorney). But as Joel lacks mental capacity we have to apply to the High Court Judge to ask if we can be Joel's Deputy and obtain Deputyship for him. Being his parents is apparently not enough. We need to have a reason to be his Deputy and go to the Hight court judge with a reason. We have engaged with a Specialist Educational Needs Lawyer to help us through this very complicated process. Which leaves us with very costly fees and still no idea what reason to use. 'I'm his mum?' is not good enough. That still stumps me. I was told by one lawyer that some parents might not act in the best interests for their children so this is why you almost have to justify why you want to be their deputy. God help those kids who don't have parents who just go into the 'system' and have a social worker as their only person to watch over them. Joel's social worker has probably been to see him once since he moved to his adult home which is now over six months ago.
So for Joel's 18th he moved the day before his birthday to celebrate his birthday in a hotel in Dorset called Knoll House I can only describe as Faulty Towers. But he had a lovely time in the jacuzzi there and enjoyed a good birthday with his Godmother in Corfe Castle bombing it around on a tractor in the countryside and enjoyed a steam train ride so as long as it moves Joel was happy.
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| In Faulty Towers Hotel for Joel's 18th |
It's been a bumpy road moving into 'Adult Services' and Joel isn't an adult he is still enjoying Peppa Pig, Thomas, Fireman Sam and The Hungry Caterpillar'.
Most 18 year olds can do the following :-
Drive
Work (Joel was sent his National Insurance number which made me sad as it was another reminder that he wouldn't be able to work)
Live independently
Travel
Socialise and have relationships
Go to parties and concerts, festivals etc
Look after themselves, dress independently and wash themselves, cook for themselves
Going on to further education, university, college, apprenticeship scheme
Joel cannot do any of the above apart from dressing himself just about. He still loves his dad giving him hot potatoes which is a real priority on a Saturday and he enjoys telling us to copy him when he talks about a train to call it out with him. This is not the average 18 year old stuff and that's ok. It's just another milestone age where most parents are breathing a sigh of relief that their young adult child is leaving home and getting a job. We don't have that as we don't know what the future will hold for Joel other than trying to make damn sure he has a life which is as meaningful to him as possible. Music therapy is meaningful to Joel and so is swimming, trampolining, school and next year college will be meaningful to Joel. Family and 'home' is meaningful to Joel as is riding and fish and chips and hot potatoes from dad. I meant to say these meaningful things like riding and music therapy that Joel had funded in children's services stopped being funded when he turned 18 so we have kept these going and in the meantime are trying to get funding for this. Again, Joel has not changed overnight and is used to these things being in his life so why take the funding away? Joel's holidays to Cornwall seeing extended family is meaningful and so is Lily the dog and 'Blue' the dog from his past who belonged to his Grandparents but he will still talk about. As long as we can keep Joel's life meaningful and purposeful and if he is happy we are happy. That's it. No 'just passed your driving test' celebrations. Just well done Joel for saying a new word and we are happy because that is progress and that is meaningful to us.
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| Joel's happy place with ipad on trampoline |
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| Lockdown walk..... |
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| Lockdown lake swimming |
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| Staycation in Joel's favourite place in his trailer at Granny and Grandpa's House |
