Sensory issues with my little Duck.

I have been asked about SPD (Sensory Processing Disorder). This is something that I feel Duck shows signs of alongside PDA/autism.

SPD is a condition which affects some of a persons senses. Now if I am totally honest, I have very little information about it. I have not researched it other than what I have been advised to look up by Occupational Therapy.  What I do know is how it affects Duck.  I touched on sensitivity in her hearing in my last post so I thought I would spend a little time explaining things in a little more detail.

There are 7 senses, yes, contrary to popular belief, there are 7, not 5 as we all learnt at school.  The regular 5 are obviously hearing, sight, smell, taste, touch but then there is a further two that I had never heard about until I got the details from OT, these are...vestibular sense (movement and balance) and proprioceptive sense (body awareness). These are the two senses which are not known about very much.

Then, each one appears to have an 'oversensitive' (hypersensitive) and an 'under sensitive' (hyposensitive) so, basically everything is double. That makes 14 areas of study for me to look into.

I have already explained about how Duck reacts to noise. She is hypersensitive.

Sight sensitivity
Duck shows no issues with her sight sensitivity. She has slightly weak eyesight, but that's very mild and there are no concerns. She does not appear to react to light and she shows a very slight under responsive system in response to lack of attention to her environment.

Smell sensitivity
Duck shows no issues with most smells, although she does react to very strong smells, this is very occasional.

Taste sensitivity
Duck is hugely taste sensitive, she has always refused strong tasting foods and stuck to bland tasting things only.

Touch sensitivity
This is one of the worst areas with Duck. She is hyper sensitive to so much. Firstly clothing, she wears the same pair of trousers to school every day, they are too short, they are old and fading and they are not in the best shape ever. But she wont wear any others. She is sensitive to texture of foods, currently she only manages to swallow liquid foods, she is refusing all solids. She is more sensitive when she is stressed. So during term time she eats even less, during the holidays, I can often get her to eat some solids. She insists on baths being HOT, so appears under sensitive, but she is hypersensitive to pain. She only wears a certain type of underwear, and cant have anything with lace on it. She regularly rips her clothing off saying it itches her and insists on socks being rolled down to exactly the same height on each ankle.

Vestibular sense (movement and balance)
This in an interesting area. You see, Duck is almost 10 years old. She can ride a bike on two wheels, however, she is very wobbly and she wont go up or down a steep, or even slightly steep hill. Learning to ride a bike was interesting.  Duck never seemed to 'get it' with bike riding. She would panic and wobble. In all it took years before she got it.  We tried every trick in the book of helping her, but she used to jump off the bike, mid ride and scream that it was alive. Then she would pick it up and throw it into the nearest bush. We have lost count how many times we had to dig the bike out of the bushes and encourage her to try again. We never really considered it as a huge issue. We certainly never related it to SPD type conditions. But then we did not know there were seven senses. It all seemed to make sense the day I took the triage appointment from OT and she asked about Duck riding a bike.  Duck always used to hate lifts ( I thought it was the enclosed space, but maybe I was wrong) although now days, she prefers lifts to escalators. Both of these fit in the movement category.

Proprioceptive sense  (Body awareness)
Poor fine motor skills springs to mind for this one. Duck can control a pen well when she wants to so again, school see no issue here. Yet I would imagine they have never given her aqua beads and asked her to follow a pattern with them. I guess they have never been on the receiving end of a whole box being launched across the room because Ducks fingers cant quite get it. I guess they have not noticed how catching a ball is somewhat hit and miss, probably more often luck or miss from what I see at home. This is yet another area whereby I see things the schools don't. But then I am 1-1 with Duck where as in a class they are 30-1 most of the time. A teacher will never see what I see and will never be able to give as much detail as I can.

Duck has to wait for about 4 more months for an appointment to see an Occupational Therapist. The lead time was 18 weeks, but we have moved on a little. They are trying a new system. They offer a telephone triage appointment within a very short time of the original referral, then they guide you to their new web site which has everything on it that you need to know to start and improve the sensory issues. The plan is that by the time you see a real person, you will have been improving things little by little and that will make a positive place to start your treatment from.  I was directed to SPD site and printed off all the relevant pages. Then I sat and went through it all, highlighting Ducks difficulties and also highlighting what we currently do to help, leaving other ideas to try out. After reading through it a couple of times, I realised there was no advice for eating issues, taste. Then I realised there was no advice for smell either. I revisited the website and searched. Nothing. In our triage appointment, I was concerned about the taste issue. The OT told me that children with SPD have issues with the texture of food in their mouths, and this is treatable. I had to explain that Duck doesn't mind food in her mouth, she just has sensory issues with it in her throat, she doesn't like lumps in her throat. The OT told me she did not know how to help that. I had secretly hoped to find something on the website that would help. But there was nothing what so ever about taste/food texture on the site at all. It took 2 days for the OT to return my call. She sheepishly admitted the details were missing from the site and that she would refer it to be changed. In the mean time, she could be no further help.  So we got half a job again.  We have not progressed much at all.  Duck still refuses solids and we have no idea how to help her. 

Not that I am getting frustrated, but everything we do seems to be half a job at the moment. Half the autism test. Half the information from OT, half and understanding from school.  Half an effort from CAMHS. The only person giving 100% here is me.