On Record- My son's story as told by his nursery head teacher with some photos from age 3 months to 3-4 years. Lloyd was at the Meadow's nursery from 1998 (age 2 1/2 when we arrived from the US) to August 2001. Jacquie, his head teacher was very supportive and assisted him greatly in his progress. She is a remarkable person who became a friend to our family, later joining us on a volunteer basis in our home education programme.
The video intends to recapture how my son was before regression age 6, as I do not have any film footage of him before this. These photos are more or less in the correct order, though for some of them, I am not 100% sure of the age. None the less, they illustrate well how lively and smiley Lloyd was. Photos from age 4-5 were essentially in forms of slides and I have not scanned and included those.
The video is a little long but I did not want to exclude too much of Jacquie's report and I also wanted to keep these photos on record for us.
These photos are demonstrative of joint attention, play skills (functional play), communication (eye contact, smile, facial expression, pointing, social referencing), imitation, and socialization skills (large group settings and joint attention with other children). The story told by Jacquie also demonstrates that Lloyd had some difficulties prior to this regression that needed to be taken into account in order to assist him in his development. Most of these skills, actually all these skills were lost within 2-3 weeks after starting primary school. Nothing else which I know of happened around that time, and I have looked for many potential medical issues, which have essentially been ruled out. A month and half later, he had status epileptus fit lasting 50 minutes. He had already lost his speech and acquired totally novel set of beaviours that had never been seen before by then. We call these stims in the autism field. But these were new. At the time, he was either covering himself under a thick blanket, spinning, putting a book right against his face, or running back and forth endlessly, from the sofa to the wall in the sitting room. He started to escape and run away from supervision, and would scream at the slightest demand and challenge. He could no longer go to a supermarket for example. I home educated him for 4 years after this regression as it became very apparent than his new school was not equipped suitably to teach children like him and there was no other place suitable in Edinburgh. The progamme (Son-Rise) stagnated for a year, and essentially no speech was regained. It is only through a combination of more directed teaching (using a whole range of Autism-based interventions) and play + sorting out somewhat his health issues, that he improved. He regained skills, learned to write, read and count. He was then able to join a small unit attached to mainstream with support. But he lost gradually his skills in this school setting again. At the same time, his epilepsy progressively worsened, it is only after this second slower and progressive set of regressions that his epilepsy worsened to about 50-15 fits a month, and again this happened in a school setting that was essentially not matching his needs. His epilepsy is not controlled by medication, and medication affects his cognition.
The story of his regression has been told here:
youtube.com/user/Skymaker69#p/u/7/o3vfB7K7oRY
And the 4 years of home education here:
youtube.com/user/Skymaker69#p/u/9/0c893ztbYdc
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Ethan 21 months-before autism diagnosisby ethansmommy030930,676 views
@thetruthergirls _ I don't know yet if Lyme can explain it all. Only the treatment will tell. But what has been described in the literature is that Lyme is a complex, multi-system condition that can have devastating consequences and even cause death if untreated. But my son started at Asperger / ADHD till age 6- perhaps all he has is AS + Lyme- then the epilepsy causing more issues as it builds up. Nobody could ever know for sure though.
Skymaker69 1 year ago
@Skymaker69 Thanks for much for your reply. I did not know Lyme could do this. I hope that knowing what it was associated with will help you to get him treatment that is well taylored to his medical needs.
thetruthergirls 1 year ago
@thetruthergirls Hi there- Sorry- Only see your comment now. No, he did not. We have found last week that he has a diagnosis of Lyme disease. We went camping in Corsica for one month before this happened. Perhaps he caught this there. in Eu, Borrelia rarely causes a rash. We could have missed it.
Skymaker69 1 year ago
He lost his skills within 2-3 weeks of starting primary school. Did he happen to have any vaccines just before starting school? You didn't mention this.
thetruthergirls 1 year ago