DAY 13. AUTISM AWARENESS POST So todays post is about Aidens early Autism signs. Aiden was born full-term at Royal Darwin Hospital with a lump on his head thought to be birth trauma. He developed jaundice and spent a few days in the special care nursery before being discharged for home. A few days later I became concerned that the lump on his head was getting bigger and he was very unsettled. I called the hospital and they advised that I bring him in for assessement. The Paed Dr was concerned about the lump and admitted him straight away for further testing. The frustrating part was it was the Sat of a long weekend and so we had to wait until Tues to have an Ultrasound. In the meantime they decided to put him on IV antibiotics in case of infection. Alarmingly they started asking questions about taking folate while pregnant and if there was any Spina Bifida in the family. It was explained that they had to rule out all causes of the lump on his head and one of the conditions to consider was a rare form of Spina Bifida which affects the brain. On the Tues we had an ultrasound which came back inconclusive and so they ordered an MRI. To my relief Dawsons Paed was on-call on the Wed and he read through all of the notes and explained all of the conditions they were considering. He told me he would be on-call the following day and would follow up the results & that he was considering sending the scans to Adelaide for opinion by a Neurosurgeon. The following day one of the Resident Drs came to tell me that the MRI results came back confirming that the lump was a haematoma and that everything would be fine and we could go home. What a huge relief. So the next morning I called both our families to let them know the good news. At lunch time the same day Dawsons Paed called me to let me know that he had sent the scans to Adelaide and that the Neurosurgeons were concerned that there was something serious going on for Aiden and that I needed to take him to Adelaide ASAP. So we called Daves parents (who live in Port Lincoln) and asked if they could meet us in Adelaide. Aiden and I arrived on the Friday and met up with Daves Mum at the airport. Aiden was admitted to the Womens & Childrens hospital and we were told that they wanted to re-do all of the tests the following week. However the Head Neurosurgeon came to see us on the Sat morning to tell me that from the scans he had in Darwin he had identified that Aiden had an Encephalocele (a hole in the skull with part of the brain herniating through) and that they needed to determine if he also had Hydrocephaly (fluid on the brain). He would require surgery but he was unable to tell yet if his condition was life threatening. He also suspected that Aiden may have had some mini strokes in Utero. Completely devastated I called David and asked him to come down with Dawson on the next plane. The next few days were a blur of tests, tests and more tests. On the Thursday we received the news that he definitely had the Encephalocele and also parts of his brain were missing and other parts had formed in the wrong place. The Encephalocele could be repaired but they couldnt do anything about the brain malformations. They couldnt really give a prognosis other than to say that he would definitely have global developmental delays (possibly and intellectual disability) and most likely would develop Epilepsy. The one bit of hope the Neurosurgeon did give me is that the outcome can be changed depending on how much input and stimulation the child receives in the first few years and that it would be up to us as his parents to make that happen. So we started early intervention with Aiden (physiotherapy and music therapy) at 2 months of age and at 3 and a half months of age he had his brain surgery. At around the same time it was flagged that he had vision issues and it was suspected that his brain was not interpreting what he was seeing visually. By about 9 months I saw the first signs of sensory issues. He would become very upset if we were outside and the wind was blowing and he didnt like anything being placed in his hands. He would also laugh at absolutely nothing - sometimes a complete blank wall. At around 10 months of age I wrote to Prof Tony Attwood (Autism guru based in Brisbane but travels the world lecturing about Autism) and asked him what I should do about my concerns that Aiden also has Autism. He asked his receptionist to call me and offered to see Aiden in the next few weeks. He doesnt take new patients anymore so it was actually an honour and a privilege that he asked to see Aiden. He listened very intently as I told him about all of Aidens medical issues and the early signs I could see which were all mainly sensory based. He asked lots of questions and in the end came to the conclusion that while there were some red flags but it was too early to tell if he was actually on the spectrum and that his vision issues were going to make it more difficult to diagnose Autism because obviously you wont have eye contact or reciprocal smiles from a child with vision issues. Anyway he agreed to monitor Aiden every 6 months so that we could push for an Autism diagnosis at the earliest possible opportunity, if required, so that he could access funding for early intervention therapy and equipment. The first couple of years Aiden had many hospital admissions due to seizures and this obviously impacted on his development. At around 2 years of age I had a letter from Prof Tony Attwood suggesting that Aiden is given a preliminary diagnosis of Autism so that he could access funding. His Paed wasnt convinced though and felt that Aiden had issues in all areas of development and that I was focusing on the Autistic like features because I already had a child with Autism. As time went on though Aiden started developing a fascination with doors and would open and close them repeatedly as well as wheels which he would constantly spin. There were so many similarities to Dawson that I just wasnt able to ignore. So at 2 and a half years I begged his Paed to refer him for a formal Autism assessment and he turned to me and said Have you heard of the new funding that has just come out? Its called Better Start funding. I am ready to give Aiden a diagnosis of Cerebral Palsy and you can access this stream of funding instead of the Autism funding. He then went on to say that given his development to date (or lack thereof) that he may or may not walk and he may or may not talk and it was likely that he would have a mild to moderate intellectual disability. It was his opinon that I shouldnt expect too much and not to waste too much time or money because it wouldnt change the outcome. This was a lot to take in and I didnt know anything about Cerebral Palsy!! For the next week or so I was a mess trying to get my head around the new diagnosis and wondering how it was I hadnt seen it coming. At that point I realised that I had to ignore the opinion of the Paed and listen to the words of the Neurosurgeon. I had to find ways to stimulate Aiden and open the doors to learning. I knew though that Dawrin wasnt going to be able to provide the level of support and the opportunities he needed. So I began researching and came across a program called Conductive Education. We flew to Perth to look at the only school offering the program and we decided that Aiden and I would stay in Perth for a few months to trial it. For the first time I saw some real improvement and I knew we were finally on the right track. For the next 12 months I put all of my focus on helping Aiden learn to walk but all along I was still convinced he had Autism. My family were all in agree-ance because they could see similar traits to Dawson. He wouldnt respond to his name, he would look through you or past you when trying to communicate and he wasnt interested in playing with toys. I found a Paed in Perth who had a lot of Autism experience (as it turns out he has a son with Aspergers). During the first session I was giving him Aidens medical history and told him that I am convinced he is also on the Autism spectrum. A diagnosis wouldnt attract any extra funding but it may help with his application for aide time for school and more importantly it means that everyone working with Aiden has the full picture. He started to tell me how it is difficult with children like Aiden with complex needs because all of their issues can overlap and it can be hard to work out which condition is causing which symptoms (nothing I hadnt heard before). I was about to tell him that both Prof Tony Attwood and myself are of the opinion that he is on the spectrum but before I could he looked over at Aiden who was studying the angles of his coffee table and he said Having said all of that my dear that is very autistic behaviour and you deserve a referral for formal assessment. I left finally feeling validated. It would be a few months before he would be assessed by a speech therapist and psychologist but I was already convinced that he would receive the diagnosis. Finally, a couple of months before his 4th birthday two major events happened. Aiden received a formal Autism diagnosis and he also took his first independent steps. So as the saying goes ..... Mum knows best. ;)
Posted on: Sun, 13 Apr 2014 03:51:49 +0000
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