Going Fishing

Today Emma had a massive day at the STAR centre.  It was back to back sessions - which last week she struggled with - as it was sensory overload.  But not today.  I wanted to share with you her fishing expedition and see how they work with her many senses and give her complete body sensations and work on proprioception.

Her first challenge for the day was to climb up the tree-house and using the zip line crash into the ball pit.  She was a bit nervous at the start as Miss Nikki would not be holding her waist, but Emma problem solved her way through it, by searching for a soft landing mat to put on the first level of the tree house.

 Seeing her problem solve her way out of this dilemma was fantastic.  She is starting to learn her words to tell us how she is feeling, and to help her.

She went flying down the zip line and crashes into the ball pit.  The ball pit is excellent source of whole body stimulation.  It also helps build up strength as you swim through the balls.  Also, the colours helps lower her sight stimulation - so it works on many different levels.

Once she had crashed into the ball-pit it was time to climb on the boat and start fishing.  She had collected the worms earlier by scooping them out of a mixture of water and sand.  This also works on a sensory level as she is learning about how to cope with wet and dirty stuff on her hands.  She also had to problem solve her way out of having her hands sandy.  She did very well with the help of a spray bottle of water.  But back to the fishing.

She had to row out to the deep ocean blue, and lower her bucket into the water. AND.... lo and behold, she was catching fish.  They were attracted to her worms in the bucket.  

Climbing onto the boat

Row, row row the boat

Pretending to snooze

She had to haul the bucket up (there were knots placed in different positions along the length of the rope to give her some resistance to help with muscles) - then work out how to get the fish out.  

First... she just wanted to whack it out with the oar - but that did not work, so she had to climb up the side of the ball pit and balance to get the fish out.  She did very well and four fish were caught in all.

Then, for all of you who know Emma, know that she has a very vivid and active imagination - and they do let her imagination rule these sessions (they have discovered that if they let Emma's imagination rule her therapy and feeding sessions - she stays more relaxed and less stressed).  She started to make the shark noise... du dum du dum du dum - OH NO.. there are SHARKS in the water.  They are wanting to eat all our fish.   Miss Nikki then used this opportunity to work with Emma with another texture and source of massage.  "Lets make shark repellant lotion".  By using her smell and sight, Emma chose two lotions that would help repel the sharks and Miss Nikki massaged them into Emma's hands and feet.  (As you know smell is another sense which they are also tackling). 

Once they were both safely ashore, they then fed the fish to the giant green serpent.  (Emma sits inside it - it is a tunnel with a hole at either end, so she would take the fish and then crawl to the end of it) .

It was a session that was filled with lots and lots of sensations, body strengthening exercises, an assault on all her eight senses, and she came out the other end happy, relaxed and not stressed. 
Also, very keen to see Miss Lainy for Food School.  (Last time she did not cope with it at all).  So all in all, a very successful therapy session. 

We can see her balance, strength and bravery growing every day.  Also, her tolerance to different smells and textures is also increasing.  They really are doing a wonderful job.

The Steps To Eating - and Where Emma is

I have mentioned before that there are 32 steps to eating .. so I thought I would list them...

TOLERATES

• being in the same room
• being at the table with the food on the other side of the table
• being at the table with the food 1/2 way across the table
• being at the table with the food outside of the child's space
• looks at food when directly in child's space 

INTERACTS WITH

• assists in preparation / set up with food
• uses utensils or a container to stir or pour food/drink for others
• uses utensils or a container to stir or pour food/drink outside of own space
• uses utensils or a container to serve self onto own place/space

SMELLS

• odours in rooms
• odour at table
• odour in child's forward space
• leans down or picks up food to smell

TOUCH

• one finger-tip
• finger-tips, finger-pads
• whole hand
• arm, shoulder
• chest, neck
• top of head
• chin, cheek
• nose, underneath nose
• lips
• teeth
• tip of tongue, top of tongue

TASTE

• licks lips or teeth
• full tongue lick
• bites off piece and spits out immediately 
• bites pieces, hold in mouth for "x" seconds and spits out
• bites, chews "x" times and spits out
• chews, swallows some and spits some
• chews, swallows whole food with drink
• chews and swallows whole food independantly

THEY ARE EATING!!!!! ... YAY


Some of the touch comes before smelling, but it is important they can tolerate strong smells...


Emma is slowly working her way through the heirarchy.   

Emma already achieves the "eating" stage through her formula drinking - we just need her to start eating solid foods..... 


She tolerates orange juice being at the table with her - but outside her space.

She interacts with soft cubes of food by using fingers or utensils

She is still very hesitant with hard food that shatters - but she can interact with it at the lowest level.


She is in the touch area with purees and fruit/veg with skin on - and that she has shown massive improvement.  She will lick skin on fruit and veg, and will put her whole hand into puree.


The big goal with Emma is to strengthen her visual system so it does not hold her back - so that she can tolerate foods of different colours, shapes, texture etc.


As we work through the heirarchy steps of eating we are also working on

1. getting her to trust all adults who will help her interact with food - that no-one will ever force her to eat something she does not want to;
2. Getting her to identify and express her emotions, so the adults present can help her process the feeding issue;
3. Need her to build her sensory and emotional problem solving skills
4. As adults, we need to make sure we build structure and success around eating
5. And the big one - make her know that "she is a person 'learning' to eat, not a person who does not eat.

So there we go... now you know what we are aiming to do with every class and lesson we attend. 

Our New Food Routine

So much information to get across.  We had another family food school yesterday, which we passed with flying colours, though we still need to work on increasing the positive feeding experience.

So now we are well and truly working on our new eating schedule.  The boys are finding it a bit difficult - Jazz is loving it cos he is eating ALL the time.. hahaha... and sometimes it feels like we are constantly feeding but we are already seeing positive results.

The goal of the meals is for Emma, James and Jasper to eat a good volume of their preferred foods , but also for them to learn about other foods, either new or not preferred.  At every meal and snack, we have to give them one protein, one starch and one fruit/veg.  It is a lot easier than it sounds.  They can have a snack of tiny teddies or crisps, so that can be taken as a starch.  Same as chocolate cake - that is their starch.  Also, they are NOT allowed to snack outside feeding hours.  But since children are supposed to eat every two and a half hours, we are not having any issues with that.  Of course, if they dont fill up at their meal time, they can get hungry but they have to learn. 

So our new schedule (of course when we get home and start diving into the day to day routines of school and kinder we will have to change it) is eating at 8.30am, 11am, 1.30pm, 4.00pm, 6.30pm and 8pm.  In between meals they can have water only.  At the end of the meal they are allowed to have a high calorie drink, such as juice, or in Emma's case - her coke - but she gets offered her formula at the meal time.  We need her to be drinking it at every meal time - her body needs to start recognising that is her meal times - because - her formula is her meal.

Our learning meal of the day is 6.30pm.  That is where we learn about the learning plate - and we do a bit more interaction with the food.  We also play the special clean up game.


5 minutes before we serve up, we warn the children that we will be eating shortly.  We then start doing some movements, or what the therapists call "Postural Activation Exercises" - to warm up the big body.  They can run around and march.  We also get them to move the foot stools to the sink to give them some pressure exercises.  


The next thing we do is we say "It is time to wash our hands now" (dont tell them that it is time to eat).  Use the hand washing as a sensory exercise by using different soaps, water temperature, different sponges or flannels, or brushes.  We then all sit at the specially prepared table (with food in the middle and learning plates).


We then do the family serving style, where the child can help themselves to as much or as little as they want of each bit of food.  Either goes on their eating plate or learning plate.  And then we eat.  Yum yum.


Once the eating has slowed, we then move onto the learning plate (of which I have talked about in earlier blogs).  After that... FUN clean up game starts.  


It can be exhausting - but we are seeing results.

Occupational Therapy

Emma has intensive Occupational Therapy every day.  Her classes involve everything from gross motor skill work such as running, jumping, swinging, sliding, playing in a ball pit - to fine motor skill work and messy play to help with her desensitisaton.

For the first few sessions, they were using musical therapy to help calm her down and keep her focused.  Here she is with her head-phones on. She wanted the pink head-band.  

  

 

This particular therapy class - we were busy baking for a surprise party for the toy cat.  As you can see, Emma bought her friend "Mitzy" along for the party.

It is an important factor with OT to help Emma learn the words to ask for help so we know when things are upsetting her and making her anxious.  And of course, the messy play helps with the desensitisation.

We did LOTS of messy play in this session

As you can see, lots of messy play.... she did wonderfully well with this session.  Nothing overwhelmed her too much and it was marked down as a success. 

The Big Lick

To be honest, sometimes it seems like we just dont get anywhere.. and THEN.... Emma does something that completely blows us out of the water.

Our food school today was about colours and food.  We are trying to show her that her eyes can be tricked, but it is still the same piece of food.   It might change colour, change texture or change shape - but dont be tricked - its still the same.

Our first item for the day was mandarins.  And just look what Emma did.

 THREE CHEERS FOR THE STAR PUPIL - MISS EMMA 


Anyway, we were very happy with this, but it was not the end of the session.  Food school today revolved around injecting different food dyes into mandarins and seeing how they change colour, but are still mandarins.  Still smell, taste and feel the same, but are just different.  Tricky on the eyes isnt it. -)

Injecting in the dye

It took a bit, but Emma was a very enthusiastic helper. As long as no colour got on her.  But she had her wiping cloth so all good.

Look at that... still mandarins - just different colours.  Of course, it was not without stress, but Emma worked through it and between her and Lainy worked out a coping strategy for her.

Her coping strategy - cover the eyes - thus limiting being over-stimulated by colours

Squeezing juice into a cup

The last exercise before clean up, was to get Emma to squeeze the mandarins, to see, yes it is the same, just different colours.


A very successful session.  WTG Emma! .

Family Food School

One important thing about food school is the family dynamic.  If the family dynamic is off, food school will not achieve the aim of the game, which for us is to get Emma eating.  So one thing that is going to be done on a weekly basis is family food school.  In family food school we are being taught different feeding techniques and learning a new food routine.  And so far it is working.

Firstly, we are all sat around the table, as most families are.  It is important to remember that food and meal times is very important to us as people, and as lives get more busy, the times people sit down to eat a meal together is disappearing.  Fast food eaten in front of the television, children being fed earlier and adults eating later, and also being fed different things.  We tend to feed our children what we label "kid food" - because we know they will eat it.  This consists of chicken nuggets, sausages, pasta, rice, etc etc.  While us adults dine on our steak, salad, delicious pasta, stir fries ec etc.  Even myself is guilty of this - James is at the fussy food stage and I know he will eat chicken nuggets and sausages and noodles until they come out of his ears.  My way of thinking was - well I already had one child that does not eat, I will feed James what I know he will eat.  He always gets offered veg and meat and whatever we are having, but does not eat it.  But he eats lots of fruit, drinks milk and cheese - and I am not worried.  He is a healthy, active little man, so why battle with him.  All kids are fussy at some stage, and they will grow out of it.  But anyways, what we were doing was not wrong, but we were pandering to James, and the way Emma is definitely influenced our feeding techniques.  Jasper is just fine.  A happy chappy who eats everything you put in front of him.

So now we are learning a completely new way of feeding the 'family' and Andy and I are learning new ways to tackle the fussiness of children's appetites and start instilling proper food and eating habits and routines in our home. 

One of the main things to remember is, when the children sit down to eat or drink at snack time, make sure they are seated correctly.  As we have learnt early on, if a child is not sitting properly, they struggle with feeding themselves.

Another important thing to try and do is at least once a day to have a sit down family meal.  I am sure that ALL of us are guilty of not doing that at some time.  There is always something that gets in the way, we are too busy, too tired, kids are grumpy whatever.  But it is very important that it does happen once a day.   Of course, sometimes it is just not possible due to work committments, but you just do the best you can.


At this meal,everyone gets two plates.  A dinner plate and a learning plate.  Dont forget a napkin or face washer to allow children to clean their hands and get rid of anything that makes them uncomfortable.   Next, all the food for the meal is to be placed in the middle of the table.  The next process is to pass the food around and make sure everyone gets a bit of everything.  Whether it goes on their main plate, or learning plate it does not matter.

Emma's plate and learning plate

My plate and learning plate

One of Emma's coping techniques - her learning plate is covered with a napkin to shield her eyes

One thing I did not know... serving size for children = 1 tablespoon per year of age.  :-)

After all the food has been distributed, everyone eats, and we have to allow the children to feed themselves for at least the first ten minutes.  They encourage us adults to talk about the food and make exaggerated chewing movements... haha.. bit of giggling here...

After ten or so minutes, after the children have started to slow down, time to move from the dinner plate to the learning plate.  Talk about the food on the learning plate.   What colour is it, is it soft, hard, smooth, bumpy, can you touch, pick up, is it hot or cold, see what you can do about it.


One thing to do... and we find it difficult sometimes, is that at the end of the meal, if the child has not eaten enough, dont push it.  Be positive with them to make sure they have eaten their fill, but dont push the issue.  


Then clean up.  Let the children help throw all the food in the bin.  Food rockets if they want, throw, toss, spit, whatever you want to do and what the child can tolerate.  Emma normally wants it gone as soon as possible.


I will put up a therapy meal plan and key phrases to help.  But this is what our feeding as a family looks like.  We do this once a day, and a the clinic we do it once a week.  Our next family therapy session is next Wednesday.  :)

Emma's OT Assesment

As you all know, Emma has been extensively assessed and tested in regarding to her developmental and sensory advancements.   Of course, our primary concern is her feeding, but as I have mentioned before, there are some severe sensory issues behind her non-feeding.

Emma is hypersensitive to all sensations of feel, sight, taste, balance and smell. As well as being hypersensitive to all of the above, she also showed "decreased tactile discrimination" - which basically means that she finds it difficult to determine the "specific properties of tactile input entering her system, whether in her mouth or on her skin".  

Of course, when she gets these sensations that she cannot identify or comprehend her body goes into shutdown mode, becomes agitated, worried and stressed.  She just does not have effective methods of regulating her responses to sensations.

To defuse the influx of information and sensation, Emma shows avoidance and withdrawal behaviour to help avoid becoming overwhelmed.  Emma has got a stutter, and this presents itself prominently when she is in this shut down state. She is unable to verbalise her emotions, and this lack of communication can make it very difficult, and has been making it difficult for us, to read her non-verbal cues as to what is worrying her and stressing her out.  So we are learning to read her cues to help eliminate this stress during sensory activities.

Another major issue, of which I have also touched on previously, is her posture and stability while feeding.  She has no stability or strength or endurance in her little body which enable her to maintain a stable and solid sitting position. As stated in the report 

"with a strong and stable postural base of support, it is difficult for Emma to focus on and plan the isolated movements required to move her tongue, teeth, lips and hands in order to effectively get foods into her mouh, and to adequately manage foods from an oral-motor standpoint."

But, regardless of this, Emma is extremely bright and passed her mental tests with flying colours.  She is struggling functionally due to her global sensory processing issues, but with all this intensive therapy we are going to improve her tolerance with sensory stimuli.  

We have set up a plan of attack.   Over the next few weeks we are going to be working on making things more tolerable for her.  She is aware that she is heading towards eating foods, so we need to decrease her anxiety and awareness and give her an escape outlet.   We will be working on decreasing her sensitivity to taste and smell, and of course, working on her posture.  We need her to learn how to verbalise her discomfort and get away from her aversive behaviour.


Her OT is a young, active and extremely enthusiastic therapist who is excited at the challenges that Emma has presented her.  Since the report, we have had several OT sessions, and I will go through these in more detail later on.

 

Feeding Evaluation - Tuesday afternoon

This afternoon we had a slight change of pace from our normal therapy sessions... we all headed in for a parent review and assessment appointment.

We are slowly making inroads on Emma and lowering her hypersensitivity, but now it was time to get some changes happening in the family food dynamic.  We need to start making meal times more structured and less stressful for Emma (and for the rest of the children - when James plays up, it makes Emma feel overwhelmed).  

Firstly, we were advised the whole family would be coming in tomorrow morning for Food School.  We were to bring in foods that simulate a typical meal in our home and Lainy would start teaching us the proper way to have a meal.

Also, we were informed that we had to start making meal times for positive and productive for the children.  It was stressed to us, that we had been doing nothing wrong, but unfortunately a lot of parents are not taught about proper feeding techniques.  

Back in the olden days (he he), we were taught, sit at the table and eat everything on your plate.  And that was fine then, but now with so much different foods (and fast food taking over) and variety our way, and also the hustle and bustle of family life, families have forgotten about feeding times.  

Due to Emma and her food issues, we ALWAYS made sure that once a day we all sat down together and had a meal, and when the boys were having lunch and/or breakfast, I always made sure Emma was involved, but all this needed tweaking.

Our new schedule.  Lets feed the children every 2 and a half hours.  And NO snacks in between.  We now have the proper feeding chairs that we ordered and a high chair for Jasper (which we will be donating to the clinic when we leave), and we sit the children down, and they all get a plate of food which contains, one starch, one protein and one fruit/veg.  It sounds difficult, but its not really in the scheme of thing.  The starch can be a handful of crisps, or a packet of tiny teddies - so the boys can still have their treats.  For Emma we need to give her a plate of the food the boys are being given, and a bowl of her salt and vinegar biscuits, and her tinkerbell (fortisip) - and off we go....

So now we are armed with a new feeding routine, and time to implement.  Its very difficult when we are not in our normal home environment, but we are doing the best we can.  We are also working on new coping techniques with the children to allow a more positive feeding experience.  

So many different facets and aspects we are studying... but we are loving it. 
It is only Tuesday, and we are already overflowing with information again.  :-)

Tuesday 17th January

WOW.. and what a day it turned out to be at the clinic today.  Due to all her amazing work yesterday, they decided not to push the issue, and stepped back a bit with her therapy.  Their jobs as therapists are to push and expand their tolerance, but also to know when enough is enough and to pull back.  We dont want Emma to go into shut down mode.

Another thing we learnt today, that the meltdown she had the night before - something that HAS never happened before, was because her sensory system is waking up.  In the past she would never get absorbed into what was happening or what happened with drink, she was shut down from all sensory activities that would upset her.  

So with that explained, I will go on and talk about today's therapy session.

We made a food face, which Emma called "Elizabeth".  This is Elizabeth. 

Aint she just beautiful.


Emma made it herself and had lots of interaction with different food stuffs.

The tortilla

Its the face

Go the cheese whip

and spread it around with our special tool - knife

luncheon meat - wet and slimy

Gotta wipe my hands - did not like the slimy wet feel of the luncheon

Go the mayonnaise - its face cream

Another special utensil to help

Dried strawberries for the mouth

Bubble gum liquorice for the eyes

Currants for the eyeballs

Lots of sprinkles for blush

and more sprinkles

Dried noodles for eyelashes (and nose hair?????)

Twirly carrots for hair

As you can see she did very well with all the different textures and varieties of food given to her... as long as she has her cloth to wipe on that is all that matters..... 


She then walked around the centre showing everyone her lovely food face.... everyone was sooo happy with her and her artwork...

This just shows that her tolerance for handling different foods is there.. we just need to build on it...


Go Emma !!!!