Wanted to say a huge thank you to each and every person who was involved in making Khalen's quilt, it arrived today, he loves it, I am absolutely blown away by the love, care and attention that has gone into making this, you are all absolutely amazing and we cannot thank you enough xxx
From birth Khalen had problems with feeding. He was 4 days old when admitted to hospital with failure to thrive, this led to a diagnosis of lactose intolerance at 3 months. He kept missing the 'expected' milestones eg. he couldn't sit unsupported until 9 mths, he couldn't support his own head until 6 mths. When we started weaning him he wouldn't swallow, he had to have many tests done such as a barium swallow test and SALT assessments. By 2 yrs old he still wasn't walking or speaking, he continued to be seen by SALT and he was also seen by physio who diagnosed him as being knock kneed and pigeon toed and hypermobility syndrome.
He would line up his toys, everything had to be in its correct place, and our routine had to be stuck to no matter what. We always had to use the same route to get anywhere, he wouldn't play with other children, he just seemed to play beside them. He was seen by a community paediatrician who referred him back to SALT, OT and also for a hearing test. We went for the hearing test and that's when they told us he was partially deaf, he has worn a conductor hearing aid ever since. After being seen by OT he was diagnosed with dyspraxia, this was affecting his fine and gross motor skills and his coordination. The community paed diagnosed him with global development delay when he was 5yrs old. By this time he was in school and was falling further and further behind his peers. He had started to notice he was different and it was bothering him, he would come home from school so upset. He had been placed on the ASD pathway, this meant further assessments by SALT, OT, Ed Psych. They assessed him in clinic, they assessed him at home, they assessed him at school and finally in 2017 they diagnosed him with autistic spectrum disorder.
Last year he had to have surgery on his ears and they discovered that the reason for his deafness was different to what they first thought. After the small surgery his consultant said that he is going to need at least two major surgeries on his ears but first he had to have a CT scan, which he did, and now he is waiting for the dates for his surgeries.
Khalen doesn't let his conditions get in his way, yes he is limited in some ways but that doesn't stop him trying. He is an amazing little man, so kind and generous and loving, he always has a smile on his face