Does anybody know anything about Sensory integration dysfunction?

[morethanyoubargainfor]

As my ds 7 has just been diagnosed with SID and tactile dysfunction and dyspraxia.

He already has hydrocephalus, hypospadias, hypermobility syndrome, migraines and severe allergies!

A majority of this conditions have been diagosed in the last year, (after a long fight to get assesments). The others don't really impact too much on us but the SID really does. How can i get other people to understand this and recognise that it is more than little quirks he has that he can over come.

We are still learnig about SID and currently reading 'The out of Sync Child' which is helping us to understand a little more and is written just about my DS . I can't believe that we have unknowlingy lived with this for so long and not completely messed him up!

His o/t says he is a text book child with SID and maybe wants to use him in trainig videos as apparently he is quite rare .

Please come talk to me about SID and how you cope with everyone else and their opinions, apparently we have brought alot of this on ourselves as we have been so relaxed with him and just ket him lead us on what he does and doesn't want to do and we don't 'encourage force him to do stuff . Unknowlingly this has helped him alot.

ok thanks for that indigobell, although i have to say i have read different outcomes with the auditory treatment, mainly bad TBH

Morethan - this might help

Sensory integration and sensory processing disorder, are the same thing, just people use different names.

My ds has SPD too. We have sensory diet and he sees OT from feeding clinic with regards to his eating.

Certain things in his sensory diet have helped. Im happy to pass on any info or what is included in his sensory diet, if its any help to you.

Oh its not recognised as a diagnosis in this Country, hence limited help available and its seen more as a difficulty, than a disorder.

Thanks for links.

Claw i have read all that info probably twice over tbh and he ticks nearly every box!

I am interested in the sensory diet stuff as it is becoming so difficult to feed him now.

I will try the stuff from a. ayres when i have finished the out of sync book.

Any info is good IMHO. So thank you

Morethan, if you can get some sensory trained OT help, that would be the best thing, but i know how hard it is to come by.

Ds attends the feeding clinic at Evelina Hospital and sensory trained OT is part of the team.

Her suggestions so far have been more messy play, things like making pizza dough with his hands, corn flour, breaking jelly cubes to make jelly etc.

We are currently trying a food we will look at, a food we will touch, a food we will smell, a food we will lick, a food we will eat.

We are also attempting to get ds to try a new food. We are focusing on meat as he has never eaten any. It has to be a new food, that he has agreed to. Getting him to agree is the hard part! I give him a couple of choices of meat which was very child friendly ie meat with faces on. He refuses point blank. I have found taking him shopping and showing the choices has helped ie you can choose Billy Bear or Bob the builder. He choose Bob the builder and has eaten some!

The idea is to put it on his plate every meal time and even if he wont eat it straight away, just tolerating it on his plate is the first step. Once tolerated, then getting him to touch it. Once touched then getting him to smell it and so on.

To get him to tolerate it on his plate, we use if you leave it on your plate, you can play for half and hour on your games console.

With ds the key is him agreeing, if he doesnt agree in the first place, he wont tolerate it on his plate and we dont get past stage one.

Sensory diet we got from Bibic, it is more of a general diet as oppose to a tailored diet from OT, although OT has given it her seal of approval.

The general idea is to increase input to try and create more appropriate sensory awareness whether your child is under/over or sensory seeking.

Sensory diet consists of

tactile stimulation - to increase awareness
facials - to improve eating.
oral - to improve eating.
tactile to hands - increase awareness
whispering - to improve listening
Rotation - to improve spatial awareness/balance
Olfactory stimulation - to improve sense of smell
To calm - exercises
Rough housing - to improve body contact/eye contact/tolerance
Also recommendations of equipment which might help.

Was there any of the above areas you were interested in, save me typing the whole lot?

thanks for that, that is really helpful.

With his diet i Know i won't even be able to get him to agree to have new foods on his plate, he literally has a panic attack, just gets himself away from the plate and shakes and hyperventilates. He can't even eat from a plate that has had the 'new' food on it.

I am most intersted in the tactile stimulation, tactile to hands, whispering, roatation. Any reccomedation of euquipment would be great.

He is over sensitive and majority of the time but he is under is some areas. Smells he is over sensitive to! As you know no two days are the same.

Hello morethanyoubargainfor,

have you looked at the 2nd book in the series "The out of sync child has fun" its full of stuff you can do at home easily and we found it invaluble for our younger ds. (He was diagnosed with SID by OT)
Now he's older things have improved. We still use a bouncy gym ball sometimes for him to sit on and foam football for him to kick around indoors. Soft play areas were great some of the times (but only when they weren't busy...)

Tessa

We found the stokke tripp trapp helped with sitting at the table. It's still not great but there's a difference.

Does anyone know if there are any books aimed at children (stories etc) about SID? my ds has some about benny the bear that has hydrocephalus and a shunt. I think this would really benefit my ds.

Hi. My little boy was born after an intraventricular bleed. - He has hydrocephalus and had to have a shunt fitted shortly after birth. They then allowed this to infect and he got meningitis. My point is that in the ensuing months as he developed, we noticed among his other problems that he was oversensitive in sensory terms. Our OT said this was the beginning of SID but didn't appear to know what to do about it. David just wasn't connected to our world at all, he would withdraw into himself I think because the world he perceived was so loud and scary. He would just sit all day in a bean bag if we let him.

We found a website by people called 'Snowdrop.'www.snowdropcerebralpalsyandautism.com - It's actually just one guy working alone out of a village hall, but he seemed to have a lot of good ideas. We went to see him about two years ago and started the programme he gave us. WOW! David is now walking and talking and doing everything his twin brother can do, he's a different child altogether than the one sitting in that bean bag! He still has a shunt and a large and mishapen head, but his latest MRI showed his brain to be absolutely normal. I'm just glad we did what we did.

Morethan, your ds sounds very similar to mine. The new food has taken us 8 months and he has only tried one, we did the lots of messy play first and sensory diet. We tried to include the new food in his packed lunch at school and it has backfired rather badly, he did the panic and shaking. Bob the builder is now off the menu too at home and he has restricted his diet to just toast for the last week or so. Too much too soon, no doubt.

Sensory diet is as followings:-

Sensory programme 2 x per day

Tactiles a, b or c plus hands and head 4 minutes

Facials 2 minutes

oral 2 30 seconds

Tactile to hands 1 minute

whispering 1 minute

Rotation 2 minutes

Olfactory 1 minute

Sausage roll up to 5 minutes

Additional recommendations trampoline, bat, ball and target games, rough housing, weighted blanket.

TACTILE STIMULATION A B C

Aims:

1. to increase tactile sensation.
2. to increase awareness
3. to learn to recognise by touch.

Method Use only one of the following methods per session Use upward movements to stimulate the arms, legs and trunk (*OT told us to use downward movements, which we do)

A Apply a vibrating massager. Use a different attachment each time.

B Use contrasting rough and smooth materials eg cotton wool/hessian. Baby brush/nailbrush.

First stroke the area with the soft material, then rub the same area with the rough material.

C. Apply hot and cold atlernately to each area, hot-cold-hot. (always use a cover for both cold and hot methods)

Extra: whilst playing with/washing/towelling dry your child at bath time take this opportunity to encourage awareness or their body and t encourage contact with you.

You do knee - ankle. Elbow to wrist. Shoulder to elbow etc. OT told us to avoid trunk.

Facials

Aims:

1. to improve tactile awareness of the face around the mouth and jaw.

1. to improve articulation and chewing.

Method: apply hot/cold/hot face cloths to one side of the face and then the other, working from the midline outwards in 3 movements. One side of the face then the other.

Then across forehead, above mouth and chin, working from the midline.

Then under chin, from midline.

Use one only of the following methods per session

Materials - soft only
Massager- vibrating
finger massage

oral 2

Aims:-

1`. To improve tactile awareness in the area on the mouth.

1. To help articulation.

1. To improve chewing.

Method: Use only one of the following methods per session.

1. with a spray bottle (empty of water) or a camera lens puffer cleaner, provide sensory stimulation to the fleshy parts of your childs mouth by blowing air onto the lips, gums, inner cheeks, palate and tongue, avoiding teeth.

1. With a spray bottle (set on its widest setting) send a spray of water of varying temperatures onto the fleshy parts of your childs mouth as above. Dont not use hot water, only warm.

1. With an electric toothbrush (or an ordinary tooth brush) immersed in water or a solution of mouthwash, provide sensory stimulation to the to the fleshy parts of your childs mouth by brushing the gums, cheeks, palate and lightly on the tongue.

1. with ice cubes (frozen water lolly) provide stimulation to the inside of the mouth and lips.

Tactile to hands a b c

Aims:

1. to improve manual function.

1. to improve tactile awareness.

Method: Use only one of the following methods per session. Provide stimulation to the palms, backs and individual fingers of each hand. Ensure all areas of the hands are covered during the time allowed.

a. Apply a vibrating massager. Use a different attachment each time.

b. Use a variety of different textures to help aid tactile awareness. Use only one texture per session.

Examples feathers, hessian or sacking, fur fabric, corks, stones/marbles, bubble wrap, make up brushes.

C. Apply hot and cold stimulations, either by using hot and cold packs or bowls of water. Always finish with hot.

Whispering and soft sounds

Aims:

1. To improve ability to listen and to concentrate.

1. To increase awareness of sound.

Method: with other sounds around the house kept fairly quiet, whisper a short story, a joke, a rhyme, or something else of interest into your child's ear.

Alternatively use a cassette recorder to play music, soft sounds or a story etc at a very low volume.

Rotation

Aim: to improve spatial awareness and balance.

Method: your child should be placed on a swivel chair/in a swing.

They should not be able to touch the floor or the the walls.

The chair/swing should be rotated in one direction and then in the other direction slowly.

Each rotation should take at least 30 seconds and should pause for 10-15 seconds before changing direction.

Olfactory stimulation

Aims:

1. To improve the sense of smell.

1. to increase the childs sensory awareness.

1. to teach the child the name of various smells.

Method: In each session allow your child to smell three different substances, whose aroma is reasonably strong. Each substance should be kept in a tightly secured bottle and when opened should be placed under the childs nose for 10 seconds. Always tell your child what they are being given to smell.

Examples, perfume, vinegar, garlic, vanilla, camphor, orange, olbas oil, lemon, almond oil, oil of wintergreen, citronella oil, peppermint oil, mustard, nutmeg, pepper, aniseed, dill, rosemary, fennel, coriander, cloves.

Avoid sage and rosemary if your child is subject to seizures

If your child is on a salicylate free diet avoid curry powder, paprika, thyme, ginger, almonds, oranges and tea

sausage roll

Aims:

1. To calm or arouse through pressure and active movement.

1. To improve awareness of body parts.

Method: Roll your child up tightly in a sheet or duvet on the floor and hold, keeping the head free.

Your child is the sausage, which you are pressing firmly into the roll as you apply deep, gentle pressure to the back.

Now wait for the child to unroll out of the sheet/duvet. They might need a little help at first.

Rough housing

Aims:

1. To improve body contact and interaction.

1. to help improve eye contact.

1. To improve tolerance of another person.

1. To increase confidence.

Method: In a safe soft play area, free of sharp edges or obstructions, wrestle gently with your child on the floor, trying to move them through a good range of different positions, maintaining close body contact.

Try to establish as much eye contact with your child as possible.

please note not all OT's agree with brushing. Some OT's do not perform brushing anymore. Our OT agrees with it and gave it her approval, but some dont

Most of the diet like whispering, rough housing, massage, etc is pretty standard, general stuff.

OT also gave us some exercises such as jumping jacks, pushing against the wall etc.

Bouncing on a trampoline and rough housing and exercises have really helped ds from seeking this input in inappropriate ways.

We got sensory diet from Bibic in Somerset, a charity. A two day assessment cost £50 plus travel and accommodation. Well worth it.

Anyhow i hope this gives you some idea of a sensory diet. My hands are aching from typing!

Sorry should have added, obviously i know nothing of your ds's medical history and you should always seek advice.

thank you so much claw, that is os vbery helpful.

I think i will look into the somerset thing for ds it sounds well worth it.

bibic contact details

Waiting list is usually a couple of months. They also have a sensory swimming pool, which you can have the sole use of for an hour a day. Helped ds overcome his water phobia, he had never been in a pool before. He even had a shower back at the B&B for the first time ever. They also have sensory rooms.

They also do all kinds of other assessments during the 2 days, prepare a report and sensory diet and demonstrate how to apply it. We also got EP assessment done while we were there. Paid separately for this, but they let us use their premises for the assessment.

Traveling there and back took a few hours, but you have a couple of days to recover.

Very helpful post claw -thanks

You are more than welcome, i have had so much support and advice from the board, its nice to give something back if and when you can.