Skip to main content

Autism Spectrum Condition Diagnosis


Jigsaw Puzzle Pieces - Autism, BellybuttonPanda.co.uk


The paediatrics team confirmed officially a diagnosis of Aspergers in June 2009 and Ryan now 7 was then placed on the waiting list for the ASD team*.  A full report was sent to the school detailing Education provision required. Referral made for Occupational Therapy and Melatonin prescribed.


http://mentaldisordersofhumans.blogspot.co.uk/2015/09/autism-spectrum-disoder.html


Unfortunately the LEA did not agree, even though Ryan had 17 further major meltdowns (10 in school & 7 at home) over the next 6 months with 6 formal letters from my MP to the LEA and a final step of moving Ryan to a new school for them to finally agree to a formal statutory assessment for a Statement of Educational Needs. 

Bear in mind also, I now had 2 children in separate primary schools 10 miles apart, while DS & I worked 22 & 25 miles respectively in the opposite directions to the 2 schools. School runs were a fun time as they both started and finished and the same times of day, but needs must.  

Ryan joined year 3 in his new school in October 2009, still part time only and I continued to home school him, but he was so proud of his new school jumper he asked to wear it outside of school. All the children were also given a water bottle each with the school logo and their name. Ryan slept with it. By the end of the school year, Ryan had managed several full days in his new school and on one of the days I had arrived to collect him at 3:15pm, he turned and said to me “I do full days now mummy, you are too early”. He had such a good day, he hadn’t realised the time.” 

*The term Autistic Spectrum Disorder (ASD)  is no longer used and Autistic Spectrum Condition (ASC) is now the commonly accepted terminology. 

Comments

  1. Thank you Sarah for sharing this, thank you too Ryan for giving us a glimpse into your world xx

    ReplyDelete
  2. You were/are/will be fantastic. Love.

    ReplyDelete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We