There's a Panda in my Bellybutton

  Neologisms [nee-ol-uh-jiz-uh m] noun 1. a new word, meaning, usage, or phrase. 2. the introduction or use of new words or new senses of existing words. 3. a new doctrine, especially a new interpretation of sacred writings. 4. Psychiatry. a new word, often consisting of a combination of other words, that is understood only by the speaker. When Ryan was little he didn't communicate in a typical developmental way. Ryan has never been typical. He spoke late and when he did start speaking he had his own 'funny' little language, that I had just about tuned into and could sort of understand, but no one else could not even his dad.  Throughout his life Ryan has said some of the strangest and sometimes highly inappropriate things, but this post is going to focus on some of the funniest of things he has come out with. To which friends and family now simply brush off with a shoulder shrug and smirk as “well that’s Ryan for you….” · Speech Therapist (ST): How do we keep dry during ...

In addition to the Walk with Me poem, I also love a particular song that gives me strength and courage when dealing with Ryan’s dark days. Cyndi Lauper’s True Colours is a beautiful simple song with some of the most powerful words that absolutely describe Ryan and his struggles almost better than anything I can write on this blog.  The lyrics are:   You with the sad eyes Don't be discouraged Oh I realize It's hard to take courage In a world full of people You can lose sight of it all And the darkness inside you Can make you feel so small But I see your true colors Shining through I see your true colors And that's why I love you So don't be afraid to let them show Your true colors True colors are beautiful, Like a rainbow Show me a smile then, Don't be unhappy, can't remember When I last saw you laughing If this world makes you crazy And you've taken all you can bear You call me up Because you know I...

I do not know who wrote this poem nor can I remember where I got it from. I do not try to take any credit for this work but would like to share it all the same.  I love this poem and read it often to help give me strength when times are tough. If anyone does recognise it or knows more about its origins I would be very interested.   Walk with me Walk with me my darling. I'm here to hold your hand Talk to me my darling. I'll try to understand. My hand you may not want to hold, words you cannot say But still I'll walk beside you, I am with you all the way. Children with special needs are born, I once heard someone say Only to those who have enough love to guide them on their way. Well I may not always get things right, but love I do have plenty You've taught me so much and without you, my life would be so empty. The world can be so cruel, to one who doesn't conform But remember that from difference, often brilliance is born. People tend to be afra...

Autism So now we have established that Ryan is Autistic and has a particular type known as Asperger's.  Well what are Autism and Asperger's and how do they differ? If you have found this blog you may well already know the answers to these questions and I am certainly not trying to teach you to suck any proverbial eggs.  However, if you are at the start of your journey then I hope this post and blog are of some use to you and will be to help guide you on your way. I am not an expert or recognised Autism professional, but I have sought education and training, and now have several qualifications in addition to my own experience as a parent to better support Ryan. I have become a qualified teaching assistant in 2008 and since 2012 have worked as a Speech and Language Therapy Assistant with children in a speech and language communication unit; several of which are also on the spectrum so I do feel I am well placed to offer support. The following information is taken...

By being a member of the National Autistic Society, I receive a quarterly magazine from them called Communication. A very interesting magazine packed with heaps of information, articles and advise. It was in the Summer 2010 edition that I first saw an advert by the Kings College London, Institute of Psychiatry looking for Autistic children to take part in a 3 year research study. I thought what a fantastic opportunity and promptly called the number advertised. I was put through to a wonderful young researcher who gave me the low down of what was involved and required from us. at the time we were currently living in rented accommodation while our house was rebuilt after the van parked itself in our front hall. (See When House Met Van post and blog for a recap). The Institute was studying how the brain develops, in particular the development of the white matter that builds connections between brain regions. They were studying this in children with and without Autism, to fin...

That is pretty much my story told to date, But I am truly hoping not to abate. I have lots more to say on the subject, I hope that you will stay to connect. There is a lot more still to come, I hope you will enjoy at least some. Ryan has settled well into secondary school. He still has his moments, but hey who doesn’t.  He has an excellent support network around him. It has only taken me 8+ years to get to this point. I feel that I am finally beginning to really cope and understand.   He has two superb support workers in school and access to a well set up Speech and Language unit. He still has regular reviews and the option of EP & SaLT are available to him. He sees his paediatrician annually and as he matures is learning more of the ‘rules’ of social interaction and how to cope with the difficulties he faces as a result of being Autistic.  Ryan finds it very difficult to fit in with the world.  He does not like people and he feels that no one li...

The build up to moving from Primary to Secondary school became more and more apparent as the months rolled by and the time crept ever closer. Ryan's meltdowns increased and he took to regularly sleeping on his window sill. In his bedroom he has a lovely deep sill that we made into a window seat. He spent a lot of time sitting, contemplating and so it appears, sleeping. Unfortunately Ryan was once again excluded during year 5 for violent behaviour, which although is inexcusable the reasons go back to that metaphorical fizzy pop bottle . The instances of bolting from school and becoming angry with the world once again escalated, but we now knew why these were happening and the SENCos from both schools where in close contact helping us all to prepare for Ryan’s next biggest challenge. Ryan was given extra ‘transition days’ in his new school to prepare him and make it a little less daunting, but the stress was too much and Ryan developed Shingles. He was really poorly for ...

Ryan continued to show signs of post traumatic stress disorder and was in close contact with a myriad of health professionals, but the good news was that he had finally gone through his assessment process for a statement and a proposed statement of education needs was issued in June 2010, when Ryan was eight years old. He asked me one day soon after starting year 4 in Sept 2010 if I knew what a ‘Marmington’ was? I admitted that I did not. He explained that it was a bald man, with white eyes and long fingernails from his nightmares. He continued to suffer with his sleep so his Melatonin was increased and a slow release version also given to help calm him. This worked for a short while but unfortunately Ryan was once again excluded from school for violent behaviour just before his 9 th birthday. His behaviour continued to prove erratic and he was finally given an opportunity to attend a program of social skills groups with the Speech and Language therapy team, which went ...

Day 1 Wednesday 13.1.2010 was not a usual Wednesday morning but it was similar  to recent days. Snow had been laying for over 3 weeks and we had another 5-8cm fall on Tuesday night so the Primary school was shut yet again due to dangerous roads & pavements and broken heating. My work was open however, so Dunk decided to work from home to look after boys and we decided there was little point dragging Owen up and out to trek Ryan across to his school as the conditions were not safe so we let them sleep in. I had a leisurely breakfast and left for work early as the roads were very slushy and icy. I got to work on time but very few children had yet made it to school so I put my bag and coat by and sat down to sort out the readers I was going to listen to that day; it was 9:05am and my phone rang. “oooppps, sorry Mrs H-P I forgot to put my phone on silent”. The actual phone conversation is somewhat hazy at this point by it went something like: Dunk – “CO...

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 da...