This is a guest blog written by an adopter friend. This blog explains her journey to getting a diagnosis for Foetal Alcohol Spectrum Disorder for her adopted son, and her struggle to get the necessary help.
The impact can be physical and emotional. I got this image from the British Journal of Nursing. Only 10% of Children with FASD have these facial features. FASD is generally a hidden disability.
Our five year old son was sitting underneath a chair in the clinic room with his bourbon biscuits on the floor next to him whilst he vigorously pumped both his thumbs down in disgust.
We had finally got to see an experienced Consultant Community Paediatrician to ask for help with his behaviour and his sleep.
He had recently been diagnosed with Foetal Alcohol Spectrum Disorder from the Clinical Genetics Clinic.
However, they only made the diagnosis, and could not offer anything further.
We had prepared a whole heap of information ahead of the appointment but were met with a brick wall.
We were being lumped into the category of parents who can’t cope with their child’s behaviour.
We are not people who give up easily, and managed to negotiate a trial of Melatonin.
We were all desperate for sleep, and we hoped this would help.
We were told that we could only have a month’s supply as our son did not have a disability and would not therefore be eligible for ongoing prescriptions.
We came out of the room and our son uttered those now infamous words in our household.
‘That stupid woman, she needs training’.
I’d like to point out that I’m a highly trained, highly experienced medical professional.
I was not impressed with the way we had been treated but we had some Melatonin and we had some hope.
That night we gave our son the Melatonin crushed in his milk well before bedtime. We took him to bed at the normal time and two minutes after he put his head on the pillow he was asleep.
Sitting in my bean bag next to his bed I cried.
This was nothing short of a miracle.
It was the first time our son had shut his eyes to go to sleep. It was the first time he had gone to sleep in less than an hour. Most nights one of us sat in the dark next to his bed for about 2 hours hoping and wishing him to sleep. We were experts on his breathing patterns that might suggest he would soon drop off.
And then he would be up again for some time in the night, most nights.
We were exhausted.
And suddenly this miracle happened and he could sleep.
We slept too.
The Community Paediatrician did not seem to believe it had made that much of a difference.
She only agreed to prescribe another three months and then it would have to stop.
We sought a second opinion.
We did some research into the options for seeing another Community Paediatrician.
We found someone who listened and did prescribe the Melatonin as it was working so well for our son.
He now sleeps. We now sleep.
Foetal Alcohol Spectrum Disorder is still not taught on the medical curriculum and medical professionals have limited knowledge or experience of the disorder.
Teachers have no formal training about Foetal Alcohol Spectrum Disorder.
It is difficult to says how many people may be affected by Foetal Alcohol Spectrum Disorder.
The number of children with FASD who have been in care or are in care is likely to be considerably higher than the general population.
For further information go to https://nationalfasd.org.uk/
Other organisations are available.
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