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Monday 18 Dec 2017
You are here: Home Blog Articles Going to hospital with a child with autism
Going to hospital with a child with autism PDF Print E-mail
Written by Avril   
Sunday, 03 February 2013

We all hear lots of nightmare stories about the HSE, but I want to share a good experience with you! Stephen, our 14 year old with autism/rare chromosomal disorder had a bad fall before Christmas. He does not have the reflex action to put his hands out so his mouth took the force of the fall. The result being that he badly broke his front two permanent teeth. He was already missing a front tooth from a previous fall. As we all know those front teeth are really important for eating and speaking, so we had to try and save/repair what we could.

Last Wednesday, Stephen had restorative dental treatment, including two root canals done at Roscommon County Hospital last week by Dr Keith Finn and his team. Because of the amount of work to be done, Stephen was under anaesthetic for over three hours. You can see from the photo here the great job they did. Every one we met went out of their way to help us, especially Eileen Goldrick, Dr Finn’s dental nurse.

As you can imagine, Stephen was very anxious and distressed and we had a hard job to get him to the ward and then on to the operating theatre. And of course he was fasting and could not understand why.

Here are my top tips on bringing a child with a disability/autism to hospital:

  1. Be persistent in finding for the right treatment for your child. It may take you a while to get the right doctor with access to the right equipment. In our case, root canal is normally done in a dental chair but for Stephen he needed to go under general anaesthetic, which a lot of dentists don’t have available to them.
  2. Phone in advance and explain that your child will be very upset and distressed. Organise to have the pre-med (medicine that helps make the patient relax and drowsy, sometimes they go a little hyper before it kicks in) written up by the anaesthetist in advance so that your child can get it the minute you go in. Stephen wanted to go home and the pre-med calmed him a little bit.
  3. Tell them in advance about any small things as they make a difference. E.g. Stephen is very sensitive to certain textures. We know from previous experience that he will not tolerate a hospital identification bracelet on his arm, no matter how tight it is put on he will get it off. The nurses on Wednesday were very understanding and left the bracelet off.
  4. Ask if there is a private room available on the day ward. Sometimes this is not possible, but it makes a big difference if you can get it. Stephen was shouting and would not go near the bed. Eventually, he sat on the chair.
  5. Ask the staff to screen off the sink area/water fountain and make sure you do not see food or drink. Sometimes there are patients coming back from theatre getting tea and toast and your child must not see them.
  6. Do not underestimate how much the experience will take out of you – on a physical level it took all of my husband’s strength and mine and the theatre staff team to hold Stephen as he went under anaesthetic. Going into an operating theatre it is a very daunting and overwhelming experience. Stephen would not let them numb the back of his hand or put a line in his arm. As you are holding him down and they put the gas mask over his face, it is very emotional and you have to get through it. It is very scary watching your child going under anaesthetic. Stephen has had lots of anaesthetics over the years and it is always very hard.
  7. Go for coffee and a walk around the hospital while the procedure is going on. Distract yourself as best you can. Make sure you are not on your own.
  8. Ask if you can go to the recovery room to be there when your child opens his eyes. Normally you are told they will bring the child back to the ward and you will see them there. We have had the experience in the past where as soon as Stephen opened his eyes he got extremely distressed as he did not know where he was. He jumped up, ripped off monitoring devices and pulled lines out. They let me in on Wednesday, so that as soon as he started to come around he saw my face and it helped keep him calm.
  9. Bring along your child’s favourite food and drink for afterwards.
  10. You will be exhausted for the few days afterwards, plan in some time for you yourself and a nice treat!
Best wishes as always,
Avril
 

Comments  

 
0 #1 2013-02-07 17:08
Great post Avril, I wish such words of wisdom were there for me 15 years ago! My darling son regularly reminds me of the vivid flashbacks he still gets of his first experience of going under anaesthetic! I can see the mistakes I made so clearly now and I fully endorse each and every one of your tips! Words of wisdom indeed T
 

About Me

I’m Avril, married to Robert and I’m Mum to 3 kids, Stephen, Michael and Rachel. Stephen has special needs (he has a rare chromosomal disorder). We can see he has lots in common with children on the autistic spectrum and children with down syndrome. As well being a Mum, I’m an advocate/lobbyist for those with disabilities. I feel strongly about the importance of including Stephen is as many everyday activities and I have created the Off We Go! series of books to help Stephen and kids like him manage with everyday events.

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