James is in his late teens, is autistic, has learning difficulties, epilepsy and anxiety, and so he came in towards the bottom end of category ‘six’ in the Government’s COVID-19 vaccination first phase priority groups: Adults aged 16 to 65 years in an at-risk group.
Last week it was James’ turn to have his first COVID-19 vaccination. Now James has had jabs before, he gets an annual flu jab for example, but it’s always a process that needs a lot of planning and preparation. One of the reasons for this is that James is not cognitively able to make decisions about things like medication, vaccinations etc. for himself (a long and detailed CAMHS assessment was gone through just for this); these decisions need to be made for him, in his best interest.
Now in this case, it was in James best interest for him to have his jab, but from his perspective he wouldn’t be too keen on someone sticking a needle in him, so the whole thing had to be carefully arranged so that the jab was administered at home and the needle only appeared at the last minute!
Despite social stories, pictures and lots of talking with James about jabs, we only just about got the jab done in time before James might have flatly refused, a few more seconds and we would have been in real trouble.
But getting the vaccination into James’ system was just the beginning. The following couple of days were really hard for James as side effects kicked in causing him to feel unwell, have a painful arm, aching limbs, loose bowel movements and a headache. James is almost entirely non-verbal, so we had to piece together the clues alongside James’ limited communication in order to figure out what side effects he was experiencing and how to help him.
Some pain relief for the aches and pains. Some deep massage for the painful arm. Letting him flop across us miserably and giving him gentle reassuring cuddles to ease his overall sense of feeling unwell. School was completely out of the question, he struggled to get up, move around the house, eat his meals etc. let alone leave the house; something that is a trigger for his anxiety at the very best of times.
The side effects subsided after 48 hours or so, but the impact of it all stayed with James for a few days longer. It was only when we took him to his favourite farm shop that weekend that we saw him perk up and that familiar smile began to return.
It has been over a week since James’ jab and he has now been back at school. It wasn’t an easy return back, each day it took ages to get him to transition from the house to the car, and even longer to transition from the car to the school entrance, but he made it and had a great time there on each of the three days that he was scheduled to be in. We hope that next week will be even better. Little steps.
The positives of James having the jab are clear, he will be protected from the virus and will be helping to protect others. The negatives, while hopefully short lived, have nevertheless been significant for him. Would we go through it all again? Yes, the long-term positives are worth it, it is still very much in his best interest, and James is playing his part in overcoming this virus, but I wish I had read a blog post like this beforehand so that we could be aware of what might happen and be even better prepared.
I hope this blog has been helpful for you if your young person/young adult is due to have their jab. Do get the jab for your young people, just don’t plan much for the few days afterwards!
Images and script © Mark Arnold except header image (unknown)
The Day Finally Came, But Who Would Be The Anxious One?
2 thoughts on “COVID-19 Jabs And Young People With Additional Needs”
Yes, true. Most people we know have a mild fever, chills, headache and serious fatigue for 2 or 3 days. If you have symptoms on the 4th day, we were told to contact the GP. We briefed our son (he has anaphylaxis, classic autism & intellectual disability & is the same age as James) on these side-effects in advance.
But he didn’t get any of them! He was amazed! So he gave very grateful thanks to God again & again individually, to friends & during family prayers. He was full of thanksgiving to God!
That’s not to say that we will not remind & rebrief him all over again before his next (second) Pfizer shot… because with autism, they need advance notification EVERY time. Like you said, autistics need forward planning.
I feel sad you weren’t forewarned? In London we were & still are often – forewarned. Having said that, we could all give thanks that James has learnt something about the fact & promise that even in a bad time when he was laid real low, those 2 days, God’s Grace was sufficient for him to survive & recover even then. God is so good! Either way, praise HIM.
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We had a special vaccination clinic put on for our guys with Down Syndrome organised by an amazing amount of work between our support group and a forward thinking Nhs team. The first jab most of them reacted as you said- the second which they’ve just had , a couple of reactions out of 170.
It’s a real challenge isn’t it – but so necessary to get our guys back to things- we are waiting til after Easter to go back – whether we will manage it – we will see!
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