Thursday, 5 March 2015

Cant I just bury my head in the sand??

Iv been living with autism in my life for as long as I can remember. Pretty much my entire parenting life. I came to terms with my beautiful toddler being diagnosed with this really quickly. Quicker than I should have now that I think about it. And I've been the warrior mom from the beginning. If there was an obstacle put in his way, I made damn sure we moved it! Whatever assessment or service he needed, waiting wasn't in my vocabulary. I found the expert parents who knew their stuff as quickly as I could and they told me more than any professional would!
Getting early intervention, school placement, speech and language, occupational therapy, it came way too easy. Although the slt and ot didnt last as long as he needed.  I am blessed he has an amazing team of therapists around him though and Im one of the lucky parents who actually gets to see them and talk to them for help. Even his social worker is a gem. Not many autism parents are this lucky.  I've done all the courses, read all the books, and for the 8 years or so since diagnosis we've managed.  The main problems are behaviour, and aggression due to different things. He has speech, Thank god!!!  But expressing himself when hes upset, over stimulated or frustrated is impossible and he lashes out. Sometimes badly.  He has an addiction to food which is probably the number 1 cause of anger.  I have to say enough at some time and NO isnt a word my son understands.

This also means hes over weight. At ten, hes 5ft something and 10 stone 5lb. We've met too many specialists to check for genetic problems, diabetes, everything, iv lost track and it was during these tests they confirmed his testosterone levels are high. Which means, yes, puberty is on our doorstep.
 Hello body hair. Hello body odour. Spots, shaving, hormones,wet dreams and oh my god masturbation.  No one tells you about this part when they tell you your little boy has autism.  This is a whole new chapter that I dont want to write.  But like it or not, whether his mind is ready, his body is, and Im going to have to help him through it.

Where do I start? How do I start? When do I start? HELP!!!!!


  1. When genetic tests were carried out, was a test for Prader Willi Syndrome done.. It's a chromosome disorder - I'm sure it would have been tested for, given your sons symptoms, but thought I'd mention it (incase not) - my daughter has PWS....symptoms include, autism (or traits of) food obsessions (inability to feel full) low muscle tone, developmental delay, and behavioural problems (including emotional discontrol) rigid behaviour, sometimes OCD symptoms, and often (but not always) lack of empathy for others.

    If your son hasn't been tested for PWS, it may be worth asking that he is. - If you google PWS (prader Willi Syndrome.... you will find many info sites about this rare genetic condition.

    Thank you for sharing your story

    Take care, Kimmie

    1. Thank you for your comment Kimmie. After much pushing and begging from me he was tested for Prader Willi but that came back clear. They are doing other tests for a different genetic problem for weight gain but im awaiting results. Im not sure of the name but he would have big problems loosing weight no matter what diet or exercise is put in. I think the medication he is on also increases appetite which doesnt help. Taking him off it will cause more problems than leaving him on it. Its all catch 22.