Christine's Story:

Insight From An Experienced Mum:

The challenges of raising a child with autism are great but with the right help and intervention many of the negative behaviors’, such as tantrums (meltdowns), difficulties in communication and socialising, educational needs, etc, can be mitigated to some extent. However, if the child is also diagnosed with FVS the a whole host of other problems come into play. The most obvious challenge is that the FVS child with autism looks different physically and parents have to deal with ways their child is perceived by others who do not understand the difficulties that are experienced on a daily basis.  However the real challenges are having to deal with other FVS symptoms which need intervention not associated with autistic behaviours. 

How do you explain amedical procedure to a person with FVS and autism when they can perhaps only understand two words in a full sentence? How do you prepare a child for a stay in hospital that needs constant routine in their lives to avoid the severe anxiety or fear that this causes to a person with autism?There isn’t an easy answer but education and information helps. When my 16 year old son, Tristram, fell at nursery school (aged 3) and split his lip this involved a trip to hospital where he needed me to be with him to keep him calm. I was very impressed when a nurse, who was expecting us and clearly understood autism, greeted us at the hospital entrance and took us straight to a lift. She immediately told the very large queue of people that the lift was unavailable to them and asked them to move before escorting Tristram and myself into the lift and up to the children’s ward where we were given a quiet room with LOTS of toys to keep Tristram occupied. He needed a general anaesthetic for just three stitches!

Never underestimate how good this treatment was. If I had had to take Tristram into a crowded hospital entrance and lift he would have likely had a major meltdown which would have involved him banging his head on the floor, biting me on my hands and arms and generally throwing himself wildly at me. Fortunately I am fairly good humoured and able to distance myself from this behaviour by just sitting quietly until it subsides. But if he had done this with his split lip (which was bleeding badly - though he didn’t really notice it) then he could have made it much worse. At three, Tristram had no speech at all - he would take my hand and lead me to the fridge if he wanted a drink - and he would not engage in any eye contact. Explaining the situation was impossible. The only thing I could do was to play with him and keep him as calm as possible. I was his ‘routine’ - his comfort blanket.


After his surgery, which I had been told was only going to be about half an hour, I waited in the corridor. Two hours later I was beginning to panic - a lot! Nobody had told me that he was in the side recovery room. Being a mum I was imagining the worst. The corridor was so quiet and remote and there didn’t seem to be any staff around. Then suddenly a trolley was pushed past and a small Tristram sat bolt upright and shouted “Mummy!”  to me. The relief was unbelievable. More surprising was the fact he had called me Mummy for the first time. I didn’t hear that again for another three years… (An important lesson - he could understand more than he could communicate and he DID recognise me)

I knew that Tristram looked different to the other children with autism and this was confirmed when I went to an autism conference in 2001. I was attending in my professional capacity as a psychology lecturer and Tristram’s nursery teacher was also attending to find out about autism as Tristram was in her mainstream class and she wanted to find out more about his needs. During the conference there was a lecture about the apparent rise in autism and some physical features were described that were different from previously diagnosed cases of autism. The professional team who were dealing with Tristram then called me over and said they had been discussing Tristram as he seemed to ‘fit the bill’ with his unusual eyes and other features. No mention was made of FVS at that time and I certainly wasn’t aware of it then.

Bringing up a child on the ASD is a huge challenge in itself - add the complications of FVS to this may explain why the child has difficulties but it doesn’t change anything. The child may change as they grow older, and if they get good early behavioural intervention, speech therapy where appropriate, education suitable to their specific needs, then things can become a little easier. I would describe my experience of Tristram as much easier in some ways now (fewer tantrums and better attempts to communicate/instigate communication)  but more difficult in others (cannot go out on his own/ make friends/ limited independence).

 

We have learnt to manage his tantrums or intervene to prevent them occurring. We can successfully take him out for a meal with us and he will behave impeccably and is polite to everybody and will order his own dinner. Conversation, however, is virtually nil. We can attempt to engage him in conversation but in reality my husband and I simply end up talking to each other while Tristram sits quietly eating his meal. (He is surprisingly good and will eat most things and enjoys trying out new foods) This is something we could not have contemplated a few years ago as we could not predict how he would behave and so would be on tenterhooks all the time - not exactly enjoyable!

At 16 Tristram attends an ‘Into Work’ course -far too optimistic but his special needs school recommended him. He has to have a taxi to pick him up and bring him home. He is not allowed to leave the college grounds as he is unable to recognize dangers and cannot cross a road by himself. He also doesn’t understand that a moving car on a driveway is just as dangerous as a moving car on a road. We have tried consistently to teach him but with no success at all. If we ask him to look out for moving cars he is unable to distinguish a moving or stationary car.


At college he was given an email address but he has never accessed it and doesn’t know what email is or what to do with it. We had applied for an Educational Maintenance Grant for him but heard nothing. When I contacted them to find out what was happening it appeared they needed more information from me - which had been sent to Tristram’s email address… I am Tristram’s financial appointee because he is unable to deal with any form of correspondence or financial affairs. They have had to change his email details so it all come directly to me now.


Despite his difficulties Tristram has made some lovely things at college including a wooden bi-plane and a superb moulded chess set with a chess board ( we don’t know how much help he was given as he can communicate very little of his college day) and he has clearly enjoyed being there.

A lot is made about encouraging independence as they get older - and of course all children should be encouraged to achieve their potential. However I also wish that professionals would understand that parents/carers are probably best at recognising their children’s difficulties and limitations and not simply assume that ‘we are frightened to let go’. We have encouraged Tristram to do all sorts of activities such as swimming, riding, playing musical instruments -  he even went to Glasgow to swim in the Scottish National finals which involved a couple of days away with teachers from his special school, and he used to go to a respite bungalow once a month. Personally it didn’t make any difference to us as we normally take Tristram with us when we go out but I would recommend respite to families where there are similar age siblings so they can have a dedicated night with parents/caregivers without interruptions.

 

We are presently doing up two rooms at the end of our house so that Tristram can have a ‘bedsit’ arrangement and feel a bit more independent while getting the attention and supervision he still needs. He can have a fridge for snacks, possibly a kettle to make himself hot drinks, etc, but he will still need to join us for a family meals as he cannot cook a full meal. Without supervision he would eat poorly and probably eat all his food in a day or two and go without because he has no concept of managing his snacks anymore no more than he can manage his financial affairs. 

Also it is important that we encourage him to keep touching base by coming out of ‘his space’ or he could go for days without any interaction. He would like friends but he has no idea how to go about achieving this. When pressed he will describe a couple of lads he is at college with as ‘friends’ but when observed there is little talking or interaction. He is also desperate for a girlfriend but does not really understand the concept. That has it’s own problems. The reality is our friends and his brothers, who live away,  are his friends by default. This doesn’t seem to bother him and he enjoys it when we have visitors. Of course we worry about his future when we are no longer here but we do not envisage Tristram living away from us as he simply would not understand why he cannot be with us. Equally we cannot imagine a life without Tristram in it.

The sudden drop off of services at 16 when they are deemed an adult can be alarming and happens in a relatively short space of time. We are dreading the next step - leaving college. There is no way that he would be able to hold down employment. He has the communication skills of a 6/7 year old and would need constant supervision and attention. It is difficult to imagine any form of employment where this sort of support can be achieved. The problem we can envisage is that he appears much more able than he actually is - this is a real problem as if he has to attend a work capability assessment he would likely answer that he can do things just to please the interviewer. Obviously we will have to apply on his behalf for benefits to cover the loss to our income - the most obvious one being Child Tax Credits and Child Benefit which we can still receive while he is in full time education - but we do not envisage a smooth transition.


In conclusion it is really difficult to fully appreciate the extra challenges of autism in a child with FVS as there are clearly many and often it is difficult to distinguish when the difficulties are due to FVS or the autism symptoms alone. The reality is that the challenges of a child with complex needs are many and a holistic approach via a multi disciplinary team involving parent/caregivers and professionals  is essential but services may be patchy nationwide. The parent is often left to find out what is available for their child and may have to fight to achieve a service or intervention. I think my professional background meant that I was able to access services and a diagnosis much sooner as I recognised the developmental problems before Tristram was two. Also I tend to be fairly proactive in finding out what is and what isn’t available. I wish I had been better prepared for certain transitions such as educational changes, etc. There is a tendency for educational and social work professionals to try and shoehorn your child into services that are available rather than try to provide services that are actually needed. Also I wish I had understood much sooner that the services that are available are often dictated by current policy and ideology which may or may not suit your child or your families circumstances. The one thing I learned is that you are your child’s best advocate and that is a skill that has to be acquired very quickly!
 

cook a full meal. Without supervision he would eat poorly and probably eat all his food in a day or two and go for days without because he has no concept of managing his snacks anymore than he can manage his financial affairs. Also it is important that we encourage him to keep touching base by coming out of ‘his space’ or he could go for days without any interaction.

 

Author: Christine Hathaway-Coley

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