Post 6 2012

James regularly ran away from me.  If he became distressed or overwhelmed, that flight instinct would kick in and he’d just run mindlessly away without so much as a backwards glance.  It’s terrifying when a child does this in a car park, in a crowd or near water.  I was determined that I was going to teach him to stay with me.  We tried a variety of different restraints but he would just throw himself to the ground and scream hysterically, refusing to walk!  The thing that ended up being successful was doing a quick walk around the block every day.  The rule was that he had to hold my hand and walk with me.  I’d press his hand in mine regularly and say, “Good job for walking safely with mummy”.  If he tried to run, I would pick him up and refuse to look at him which he disliked.  After about a minute, I’d put him down and we would try again.  And in the spirit of being truthful and honest, on MANY of these occasions I would cry almost the whole way around the block – it was so frustrating!!!! After some months, he did get better at it.  It was a skill he just had to learn for his own safety … and for the sake of my nerves!

Around the 12-18 months of age mark James continually had ulcers in his mouth.  They looked really sore and angry.  We had blood tests done and it was thoroughly investigated because we just couldn’t seem to clear them up.  Then one evening I went in to him during the night as he was crying, and his bed and his face were covered in blood.  It gave me such a fright!  We got him out of bed and identified that the bleeding was coming from his mouth.  He would not give us any eye contact and he was chewing his cheeks and his lip.  We tried everything to get him to stop but he just wouldn’t! It was so distressing! By the time he fell asleep his little lip was hanging open.  Chris and I were just beside ourselves.  Why would he do this to himself?  We didn’t know it at the time, but this was probably the first evidence of his extremely high levels of anxiety and stress.  We worked out a program to deal with this problem.  He loved his dummy almost pathologically. So we dipped it in glycerol which is a sweet tasting liquid which has many different uses but medically has been used to reduce bacteria in the mouth.  When it is sucked, it heats up and this distracted James from the biting.  At other times we used lollies or ice to distract him from the biting.  This problem continued for some years.  Anxiety is a big issue for many children on the Autistic Spectrum. It becomes such a significant issue for some children that they end up being diagnosed with General Anxiety Disorder co-morbid with Autism.  James is still medicated for anxiety and it continues to be the most disabling component of his Autism.

From a young age, James put everything in his mouth … and I mean everything!  He would put sand in his mouth, rocks, dirt, soap, chalk anything! I found it totally repulsive and just could not understand it!  I forget the number of occasions I’d run him into the laundry (whilst simultaneously dry retching) in order to hose some foreign filth out of his mouth.  There is actually a name for this condition – pica and it is prevalent amongst children with autism. 

James had and still has big eating issues.  He doesn’t like his food to touch. He doesn’t like to mix textures. He doesn’t like more than one colour to be on his food.  White bread is OK but white toast is often not OK because the colour of it is not consistent.  Chicken breast with no coloured bits in it is OK.  Chicken thigh is not OK because the colour is not consistent.  Cous cous is OK.  But chicken and cous cous together is not acceptable.  He has always had a love of ice and other textures that are crunchy.  He requires lots of oral input to relax him and give him feedback in the mouth.  I have always incorporated a number of crunchy items in his diet throughout the day.    He takes a multivitamin each day and eats enough of a variety of foods to keep him reasonably healthy but this is an issue that worries me and also drives me utterly insane!!!  We have discussed the issue with a number of specialists who simply say that he’s in great health, and just to persevere (which makes me want to slap them!!!)

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