Attending appointments with your child or adult with learning disabilities and autism can be very challenging for a number of reasons.
It’s likely that over a number of years you will have to attend many medical appointments and may have lots of admissions to hospital too. There will also be various therapy appointments, visits to the doctor, the dentist, even things like going for a haircut can be particularly challenging. Unfortunately, these things can’t be avoided so we have to find ways to make them manageable and less stressful for our child and that in turn makes it less stressful for us too.
One of the most difficult things for James is ‘waiting.’ Inevitably it doesn’t matter how you try and time it to avoid having to wait too long you will have to wait. It’s a balance between trying to arrive not too long before your appointment but leaving enough time to travel bearing in mind there can be hold-ups on the way with traffic. It’s even more tricky when you are attending somewhere for the first time and not sure of where you are going. We recently had to attend a neurology appointment with James at a hospital we had never been to before, parking wasn’t easy and then it was a long walk to find the correct area of the hospital we had to be in.
Go Prepared
James has got better at waiting as long as I take some things with me to occupy him. I mean, there would still be a limit to his patience but it’s possible to entertain him for a while. I always take books as he enjoys these, some of his favourites. Phones are great these days too as we have lots of pictures on there to look at and James will go through signing everyone’s names in the pictures. Depending on the time of the appointment I may take him something to eat. As James is on a soft diet only, I can’t rely on being able to get him food where we are going so I always take it with me, and anyway a snack will also occupy him for a few minutes.
I’m sure other parents and carers will have specific things they like to take to occupy their children and this may include technical gadgets. However, I prefer not to rely on those as I’ve found to my cost that if technology fails as it often does, especially if you are unable to get internet access, then the fallout is even worse. If something doesn’t work in the way James is expecting it to then he will become incredibly distressed. Going off subject here, during lockdown we used Facetime and Teams for occupational therapy sessions and also to keep in contact with James’ grandparents. Apart from the fact that James would just hit the off button if he didn’t want to do it, if it took longer than expected to connect, Facetime crashed or the internet failed then James would have the worst meltdown actually outweighing the benefits totally. Technology can be unpredictable.
Many hospital waiting rooms, doctors’ surgery’s, dentists etc will have a toy or book area for children. In hospitals though it will often only be in the paediatric departments so if you are going to be in another area it’s advisable to take your own things and in my experience, what is on offer was not really appropriate for James.
What Else Can We Do To Prepare For Appointments?
There are a number of books for young or autistic children about going to appointments and on outings. These can also be suitable for our adults with learning disabilities. James has some which I bought from Amazon a few years ago. Written by Avril Webster they are relatively short with clear pictures and just one or two sentences per page. Not only do they cover topics such as going to the doctor, dentist or optician, but there are others covering various other aspects of day-to-day life. Look for the “Off We Go” series of books online.
Depending on the ability of your child, talk to them beforehand about where you are going and what is going to happen, they may have some questions. It is important that you are as honest as possible with them and if you don’t know the answer to a question you need to say so. Role play may or may not be appropriate, you can show your child how the doctor will listen to their chest and reverse the roles letting them be the doctor too.
Hospitals are often big places, there can be lots of unfamiliar noises and lighting too. For someone who has sensory issues it can be a particularly chaotic environment. It may be appropriate for them to wear ear defenders if this is an issue for them.
Life Story Work
For those who struggle with going to new or unfamiliar surroundings some life story work may help. I have made books online to prepare James for life events and I also make shorter versions to support him with appointments. Most recently this has included going to the dentist. I will take pictures myself of where we are going or find pictures on Google Images that can be used as you can see below.
Plan Ahead
Talk to your hospital if you are going for an appointment or an admission and see if they have learning disability nurses who are able to support you. Be confident in explaining what you anticipate as being difficult for your child, you know your child best. The ‘needs of the individual’ should be taken into account so that they can access the required services and ‘reasonable adjustments’ should be made to make this possible. They may be able to help, for example there may be a quieter area you can wait in if this is an issue for you, they may be able to update the paperwork while you wait in the car. I recently read of a case where a child with a severe learning disability refused to go into the dentist’s room and so the dentist came and saw the child in the waiting room.
Continuity of care should not be underestimated so don’t be afraid to ask to see the same person each time. Of course, this may not always be possible but it may be important for your child to build a relationship of trust. I have had this with James’ dentist. The receptionist will want to book any available dentist but I express the need to see the same person even if it means waiting a little longer for an appointment. She has got to know James a little over a period of time and knows how to approach and encourage him.
Think about what time of day is preferable for your appointment. Often earlier appointments may be running closer to time reducing the amount of time you have to wait whereas clinic appointments often overrun later in the day causing longer delays. If you know a particular time of day is going to be difficult for your child then say so. Let them know if you feel a longer appointment will be needed and if there are any specific triggers for your child you think they should be aware of. As long as you explain politely most staff will try and accommodate you. I think we do need to bear in mind that its not always possible to get an ideal time, staff only work certain days or hours and may be off sick at short notice but it doesn’t hurt to ask.
Routine is important to James so I always try and get his dentist appointments either at the beginning of the day of the end so it means he can still attend his day service, be it going in a little later or finishing early. Appointments in the middle of the day mean his whole day is disrupted and this is confusing and unsettling for him. It does mean for routine appointments that you may have to plan ahead to get a time that suits you.
Online Resources
I have also found some online resources on www.gov.uk and some videos on YouTube about going for blood tests etc. Look specifically for the ‘learning disability’ versions. Some were a little dated and I advise you watch them yourself first to check their suitability.
Tips For Parents
🗯 Always remember to take your hospital appointment letter and a list of current medication.
🗯 If at all possible take another person with you to be an extra pair of hands while you talk to the doctor/consultant etc. This may be your one chance to discuss something important with them so you want to make the most of the opportunity.
🗯 Write down any questions you have or a list of bullet points to discuss. It’s so easy to forget what you wanted to say or ask when you are there.
🗯 If at all possible, try and leave other siblings at home with a friend or relative or, if old enough, in the waiting area so you can concentrate on the job in hand.
🗯 Let the hospital know in advance if you need a translator for your appointment.
As always, we’d love to hear from you if you have any tips on how you manage your children or adults in these situations or if you are aware of any great resources that you find helpful.
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