Looking for tips/advice for son getting successful ... - Mencap

Mencap

4,793 members1,286 posts

Looking for tips/advice for son getting successful COVID vaccine jag

Runningmum2 profile image

My son has Down Syndrome and was offered his first vaccine jag on Friday. I spoke to a liaison person at the venue to ensure a plan was in place for a successful visit and emphasised that they would only get 1 chance at it. Unfortunately it didn’t go to plan and he realised what was going to happen and from that point onwards he was having none of it. I came away so angry, frustrated and emotional as I wanted the experience to be as positive as possible knowing that it would have to be repeated in a few weeks. I’m now not sure how to move forward and get these jags done. Does anyone have any advice which could help, please.

15 Replies

My son has autism and learning disabilities. Our local LD nurses came to his supported living and vaccinated all the service users. Could you see if your nurses locally would be able to offer the vaccine that way. I’m a nurse in a large vaccination centre and I think that environment would not have worked for my son either.

hi i agree with lindypop56 a few of my sons friends have downs and they all had the jabs at home its worth asking your doctor if they can do that for you good luck

Hi, so sorry to hear this. I completely agree with Lindypops and pogdog - venue is so important to reduce anxiety and give your son the best chance of remaining calm. My daughter (LD/severe ASD) had Emla cream beforehand, it’s a topical anaesthetic applied to the site at least an hour before, ask your GP or practice nurse. They will hopefully provide it along with instructions. We made a story explaining how only people who have the “special medicine” can go out and have treats. We also used a bit of bribery and promised a McDonald’s as soon as it was done. Anything that your son really enjoys could be used for this, it’s hard to give advice when all our children are so different but I hope some of this helps. Best of luck for your next appointment X

Lindypops56 profile image
Lindypops56 in reply to C-N-M

A bribe is also a great idea - we told our son he might be allowed in the pubs and coffee shops when they opened again unless he was vaccinated! That did the trick 😂

Sarah_Mencap profile image
Sarah_MencapAdministrator

Hello

I am so sorry you have both been through this. What a stressful situation.

I have asked our helpline for their advice with this, but I think contacting your GP would be a good idea to see if they can help. You can also contact our helpline on 0808 808 1111 or email helpline@mencap.org.uk so you can talk to one of our advisors.

You may find this guide from the Challenging Behaviour Foundation useful - challengingbehaviour.org.uk...

Best wishes

Sarah

My 21 yr old daughter is learning disabled and has mental age of a young child and often gets very upset with medical situations . She received her vaccine an hour ago!

Last week I called my GP and spoke to receptionist explaining that we would not be able to go to a mass vaccination centre as daughter would get too upset. I also said we would require numbing cream (Emla) to have any chance of this working.

GP agreed to request, cream collected on Saturday, telephone call this morning to arrange time (cream needs an hour to work) and nurse arrived this afternoon. She prepared syringe out of sight.

Daughter was upset and panicked but we reasssured her, promised a McDonalds if she would take jab, held her in a hug and got it done. She cried but watched the needle go in and did not even flinch. Lots of hugs and praise afterwards. Calmed down quite soon afterwards and is currently singing along to a favourite dvd.

I would discuss your situation with GP as I really feel that home setting made a huge difference. Good luck.

Glad to hear your experience went well.

Numbing cream might be a good idea but it could be a battle just getting that applied as he tends to remove things like that(from past experiences).

I’m in two minds about home being a better place as I’m thinking home should be somewhere that he feels safe and that might be jeopardised if he has another bad experience. It’s so difficult to know what to do for the best outcome.

Sally426 profile image
Sally426 in reply to Blackhouse

Good idea also get a leaflet to read with a parent so he or she is distracted i did that for me

Dear Running Mum2

My son lacks mental capacity. In the autumn the nurse came to his care home to give flu jabs to all residents. Unfortunately he refused and I imagine his anxiety levels rose when the nurse returned 2 more times to try. I don't think any of the brilliant strategies outlined by other parents/carers would have helped because he lives very much in the moment and does not think about actions and consequences. He would not agree to a jab to protect him from illness. He would just feel afraid of the injection and wouldn't understand its purpose.

When it was time for his covid19 jab I happened to be nearby and was asked to go to the home to be with him. I knew he would recognise the nurse and would become very anxious so it was done without him seeing. I felt the most important thing was getting the vaccine into him. Of course he was surprised and upset but 2 minutes later he was happily eating lunch. That may sound cruel but it is a few seconds to safeguard his future health with the minimum worry time. Of course everyone is different and i felt this was best for him. For the 2nd jab I have suggested they get some numbing cream. Like your son, mine is likely to wipe it off if distraction doesn't work. He is going to be more aware next time so I'm not sure how this might go. But I can say his upset lasted no time at all...chocolate, lunch and straight on to a favourite footspa afterwards. He still trusts his carers and is quite content.

Blackhouse profile image
Blackhouse in reply to Gus56

With regard to numbing cream - it is covered with a very light plastic dressing to stop it being wiped off.

Gus56 profile image
Gus56 in reply to Blackhouse

Yes thanks for the tip. We have experienced the cream during stays in hospitals. Care staff need to be quick and aware that he will pick off anything that should not be there, so we will will try the cream but they will need to be very vigilant to keep his attention away from his arm. Also I am worried that he will catch on that a jab is coming and this will increase his anxiety. It seems kinder to try the cream and of course in the future there will be more jabs to come. We need to keep the trauma as low as possible. It is all quite tricky when you can't reason with someone.

Runningmum2 profile image
Runningmum2 in reply to Gus56

I totally understand where you’re coming from. My son would whip a plaster off in no time. He managed to pull out a drip once in hospital which took the staff by surprise! As parents we know what our children are capable of, it’s trying to get others to understand and believe it that’s half the battle. Our other problem is that when our son senses fear and doesn’t want to do something he won’t simply cuddle into you, he puts up a fight and can be incredibly strong so it can turn into a wrestling match which is not what you want when this procedure is going to have to be repeated. I know I’m sounded negative about all these suggestions but it’s because I know how he reacts in these situations. I wish I could just wave a magic wand!

Skye_Bear profile image
Skye_BearExpert

Hi,

I'm sorry that this wasn't a successful trip to get his vaccine, I have provided the link to our reasonable adjustments Easy Read that you may find helpful.

mencap.org.uk/sites/default...

This has only just been released but I hope you are able to find it of some help in asking for some reasonable adjustments including asking your GP to have a home visit rather than the busy hubs.

If you have any further issues, please do feel free to get in touch through one of our Webforms:-

mencap.org.uk/contact/conta...

Kind Regards

Lyndsey M

Contact & Assessment Team Advisor

The Learning Disability Helpline

In a similar position. My son is at residential college and the first jab was done there. They came from behind whilst he was distracted on his iPad and did it. However there is no chance in hell that he’ll fall for that again! They have an on site surgery and I doubt they’ll even get him in there. He may be silent but he’s definitely not stupid!

Your son is entitled to reasonable adjustments to be made. I would imagine given the poor experience he has had he needs extra TLC to get thro this challenge.

Cold you speak with your practice manager and see if a Dr or nurse he already has a relationship with could come to your home. My daughter used to be anxious with any intetvention. Getting a urine sample took an hour of pleadimg.I was s cimplete wreck. The women's health service had a team of nurses that built up a good rapport by coming to the home and taking ample time to treat her with dignity and respect until she eventually accessed community clinic sessions.if the gp can't help perhaps the practice manager could suggest an alternative as they should know what s available.

You may also like...