More about Edward

Around this time we started getting worried about Edward’s speech. Having three older sisters to translate for him, we thought he was just being a lazy boy. He understood everything we said to him but when he answered, he substituted a ‘d’ sound for almost every consonant, but we all managed to get the gist of what he was trying to say.

After having three little girls who were relatively easy babies, the arrival of a boy came as a bit of a shock, although I guessed that maybe all boys were more difficult. Or maybe just ‘more’. More affectionate, more clumsy, more noisy, and more hungry.  Edward didn’t sleep for longer than two hours at a time at night until he was two and a half, and seldom at all during the day. He was out of his cot at the age of ten months, and very accident-prone.

To reassure myself about his speech, I made an appointment for him with our GP for a check-up. As usual we sat in the waiting room for an hour because the doctor was running late. By the time we got into the surgery Edward was bored with the various toys and stories I had taken along to entertain him and he lay on the floor and kicked the wall. The doctor took one look at him and said ‘I can see why you have problems with this child’.

I saw red. He wouldn’t have been so bored if the doctor hadn’t kept us waiting. She referred Edward for a battery of psychological tests and requested that both Michael and I attend. While Edward was undergoing a basic IQ test, Michael and I were placed in a children’s playroom with a one-way mirror. There was a doll’s house and various toys, but no magazines. We could see shapes of people behind the glass, obviously watching to see which toys we played with. I was so tempted to go up to the mirror and make faces, but maybe that was what they hoped would happen. I disappointed them and took a book out of my bag while Michael sat looking at his watch and growing irritable.

The outcome of it was that Edward was hyperactive, and I did not know how to handle a hyperactive child. I was then referred to a Miss Smidt for counselling, who being an unmarried lady, no doubt knew all about raising children. After two sessions she had completely negated everything I believed in without offering me a practical alternative. I was indecisive and pathetic and it was impacting on my children. So I did the only sensible thing and stopped going.

After a while I took Edward to a private speech therapist twice a week. We kept this up for eighteen months, but little improved. She then referred the little boy for full assessment, which included an EEG and a brain scan.

We were told that the EEG showed epilepsy, although at that stage I was certain he had never had a seizure of any sort. He didn’t go to crèche or nursery school. He was with me all the time, so I would have known. The professional opinion was that the epilepsy was latent and would probably appear around puberty.  The brain scan showed damage to the cerebral cortex which might have been caused before or during birth or from any one of his little tumbles. The best prognosis they could offer was that Edward would make sheltered employment and we were advised to send him to the school for cerebral palsied children.

We were devastated. Michael refused to accept the diagnosis and retreated into himself. When I took Edward to the school and saw children with every form of disability, I could not believe this was the right place for him. He was a bright little boy who just happened to speak a language all of his own. I went home and cried until it was time to fetch him.



3 thoughts on “More about Edward

  1. Hi Marian, very good reading but I see I must wait till next Monday to know the rest.
    Sorry to hear you had to go through this with Ed. keep strong+++


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