Stuff With Thing

Smiley Saturday time again. If you want to join in then click on the Smiley Saturday link above and head over to Lightenings to enter your Smiley Saturday link.

Heidi got assessed and diagnosed on the autism spectrum last year at La Trobe University. This week the University opened the Olga Tennison Autism Research Centre.

Looking at their current projects it is reassuring to see they are not getting side tracked by the whole vaccine issue.

I’m currently ploughing my way through “A review of the research to identify the most effective models of practice in early intervention for children with autism spectrum disorders”.

We are also smiling because the Sensory Diet is working really well for Heidi. We’ve spoken to the Occupational Therapist at our early intervention centre a couple of times and fine tuned the diet a little.

If you think your child or yourself would benefit from a sensory diet, then please seek professional help (Occupational Therapist) as you really do need expert guidance as doing the wrong thing can end up very very badly. With the right guidance a sensory diet can be a huge benefit.

A few things we have been doing that I’m so thrilled about are:

1. The chewy necklace which I mentioned in the museum post.

2. Changing what foods Heidi eats, alternating between crunchy food at meal times and chewy food at snack times. Also making her drinks much thicker (by adding yogurt) and making her drink them through a straw.

3. More yoga / gym ball work. Lying Heidi on the ball on her stomach and rocking her back and forward. Or sitting her on the ball and bouncing up and down. Or lying Heidi on the floor and rolling the ball over her.

4. The joint compressions that we have been doing for a while, now doing in conjunction with other activities.

5. Swinging upside down - Heidi just loves this - like really really loves it. Sadly my back is not up to it and we have to figure out other ways to get Heidi her upside down swing. She does enjoy hanging upside down over the arm of our couch, so that is a good start.

6. Sensory tactile play - sort of a formalisation of things we had been doing like the “poke slime” experiment (Slime progress - Heidi will now hold the slime and poke her hand in to pull out the ball . She still does not like the slime all that much though )

7. Sensory mouth play - blowing whistles, bubbles, harmonica, kisses. One big success has been feather blowing races, I give the girls a feather each and they have to blow them along the floor to the finish line.

8. We are trialling a vibrating pillow (like the one halfway down this page) which so far has made it much easier to to Heidi’s joint compressions (she does not try to escape as often) and helps at meal times to keep Heidi at the table - although I am worried about it getting dirty.

9. Jumping and bouncing and all those fantastic proprioceptive activities. My personal fav. proprioceptive input is for Heidi to get the wet washing out of our front loading machine, carry the basket full of wet clothes to the tumble drier and fill it up. Heidi really seems to enjoy it also, bonus of teaching her a vital life skill.

The sensory diet is all good stuff, heaps of extra work but well worth it to see Heidi much calmer and happier. It gives us more ways to help Heidi through difficult times.

One really fantastic positive is that Heidi does the sensory stuff with us and then starts to do it herself. She knows when she needs more / less sensory input and self-regulates really well, once she has the tools and the knowledge. We need to watch to see if she needs help or re-direction.

The second fantastic positive is that Annie is really on board with the sensory diet stuff. She enjoys doing the activities with her sister. Is a great example to Heidi of how to proceed in some things that Heidi does not understand and even leads some of the activities with Heidi.

I’m as proud as punch of both my girls.

If you think your child or yourself would benefit from a sensory diet, then please seek professional help (Occupational Therapist) as you really do need expert guidance as doing the wrong thing can end up very very badly. With the right guidance a sensory diet can be a huge benefit.

Yesterday (Monday) the girls and I went to the Melbourne Museum with my good friend S. Her partner J had to work which is a shame as we had lots of fun and I missed J being around to laugh with me at the antics of S and the children.

Particularly amusing to me was the horrified reaction of S and Annie to the conception and birth movie. I pulled them out as the baby’s head was emerging. Both had such similar expressions of horror and disgust it kept me giggling for the rest of the day.

Heidi loved the museum and I loved seeing what interested her. We all had fun in the childrens area, Annie latched onto a primary school group and I think would have happily stayed with them for the rest of their tour (if the teacher had let her).

We visited the display on the human mind and all had fun playing with the interactive displays that mess with your sense of perception.  One interactive display showed what your level of alertness was - calm, alert, watchful, worried, stressed.  You put your hand on a metal plate and it played a sound and a graph charted your response to the sounds.  I started of at ‘watchful’ and remained there the whole time, in a constant steady state of watchfulness no matter what sounds popped out.  Thats the way life is when you are out and about with two pre-schoolers.  S remained in a steady state of ‘alert’.  Annie started off as ‘alert’ but when the sound popped out the graph skyrocketed to ’stressed’, then down again.  Interesting stuff.

Both girls were wearing their “Who Am I look inside” tags which was greatly reassuring as Annie had a tendency to wander off out of sight.

Annie wandering off - yet again

I also took the pram which gave Heidi a place to hide when everything got a bit too much and she used her new chewy necklace a couple of times. Which reminds me I must post about her new sensory diet at some point.

All in all a great way to spend the day.

Now my screwup.

Screw Up Tuesday is the brainchild of Bettina. Once a week we can confess our screw ups, good for the soul right :D.

I ordered my groceries through Coles Online last week and got them delivered. This was fantastic, no impulse purchasing, no major dramas taking the girls grocery shopping. All smooth sailing… that is until I realised I’d not purchased anything for my lunches. I remembered to get stuff to make lunch for hubby. I remembered to get stuff for the girls to eat for lunch. But nothing for me and I’m not a great fan of vegemite sandwiches :(.

I also neglected to purchase any convenience meals for days when I’ve just had too much. So we ended up getting McDonalds for dinner last night. 12 days of no-takeout. A record for us. Ah well. Now I just have to try and beat that record.

Quick health update. Monday 30th June I will be going into hospital for the day to have some further tests done for my Crohns. Wooo. So much fun. Not. I need to have an MRI and am waiting on the hospital to call back and tell me when that will be. Very likely things will go quiet for a few days around here over this weekend and the beginning of next week.

We went to Church today for the first time in some months and Heidi happily went to Sunday School but got very distressed when the teacher left the room for communion and things went down hill from there.

I’m trying to put a social story together to tell Heidi about Church to make the next visit a little happier. This is what I have so far. I’d appreciate any help with this.

*Going to Church*

Sometimes I will go to the Church with my family.

At Church we sing and pray and listen to Pastor.

When Pastor is speaking, I have to be quiet.

Sometimes other people might read from the Bible or say some prayers and I have to be quiet.

During Church I can chewy on my chewy necklace, colour in, play with the toys in my toy bag or do something else quiet.

When it is time for the Childrens Address all the children in the church go up the front to sit.

I can go and sit with the children up the front or sit on a chair with a grown up. I sit quietly and listen to the story. If I want to I can chewy on my chewy necklace or rub the red carpet with my fingers.

After the Childrens Address is over I go to Sunday School with the other children. Mummy and Daddy will stay in Church.

At Sunday School we play games and sing and listen to Bible stories.

If I need to go to the toilet I can tell the teacher “I need to do wees or poos in the toilet”.

Mummy will give my Sunday School teacher a chewy snack for me to eat if I get hungry.

During Sunday School our teacher will leave the room to go to Communion. Another teacher will stay in the room with us until our teacher comes back.

When Sunday School is finished Mummy or Daddy will come to the Sunday School room and get me. I need to stay in the Sunday School room until Mummy and Daddy get me.

Then I can have morning tea at Church and have something to eat or drink.

We are practicing tense with Heidi.

I hold a toy and jump it over an object and then say “The toy jumped“

Or I drop a toy and say “I dropped it”

Our focus words are ‘jumped’ and ‘dropped’ and it has been fun trying to emphasis the ‘ed’ on the end without making it into two words.

Toys of choice are the highly motivating “Fisher Price Little People” in this case her cars: “Eddy jumped the car” or “the car jumped Eddy”

I noticed over the last few months that Heidi will get see, hear and smell confused. Examples:

In an underground carpark where our voices echoed “I see my voice”
Standing next to the front door ready to leave “I smell the door”

So we’ve been playing with a sound effects game, listening to a sound on the CD and then finding the matching picture

eg play sound of toilet flushing
“I hear flushing”

And use the ‘hear’ sign of a hand cupping the ear to reinforce the verbal cue.

(picture thanks to PictureSET who have some great visual aides available free of charge)

point to the picture
“I see flushing”

And point my finger from my eye to the picture to reinforce the verbal cue.

This has worked amazingly well.

Smell we play with during meal times (naturally) and when the girls are helping me to cook - hold item of food to our noses for example vegemite “I smell vegemite”.

We’ve now almost got ’see, hear and smell’ sorted out although Heidi will still get them confused if she is very excited or distracted.

In, On and Under came to our attention during a recent speech therapy session.  We thought Heidi had these under control but while doing a test she got shown two pictures, one was a hat under a chair, the other was a hat on a chair.

The speech therapist pointed to the first picture and said “the hat is under the chair”.

Then the therapist pointed to the second picture and said “the hat is?”

Heidi answered “the hat is up the chair”

So with the help of our highly motivating Fisher Price Little People we are practicing “In, On and Under”.  “Mummy is in the house”. “Mummy is on the house”. “Mummy is under the house”

A wonderful friend in the states is sending me a parcel of assorted Rubber Ducks and I’m really looking forward to having some new highly motivating toys for Heidi’s speech therapy.  All these things only work for as long as Heidi is interested in playing the game and she is more interested and plays for longer when there is a higher motivational factor. And lets be honest how could a Rubber Ducky Nativity not be highly motivating

And this proud Mummy thinks that for 3 and a bit years old Heidi is doing pretty damn good.

Pictures taken by Annie and Nephew M.

It has been 12 months today since I was sitting in a little box of a room at the La Trobe University Psych Dept. building hearing that Heidi was on the Autism Spectrum, and in all probability had Aspergers Syndrome.

Seems significant date in some ways and in others not so much. Of course last year the 13th of June fell on a Wednesday, not a Friday, so the whole Friday the 13th title is a bit misleading.

That was such a hellacious week last year that we didn’t have time to process the diagnosis because of everything else that was happening. Even afterwards I think that the 2 deaths (a close friends father and great aunt) helped us to see that having a child on the Autism Spectrum was not the end of the world. There was so much worse news we could have heard and Heidi was still the happy, healthy child she had always been.

12 months can make such a difference to our world. When we saw the pediatrician on Wednesday this week she said it was amazing to see how much Heidi has changed in 12 months. From the barely verbal child who didn’t make eye contact to the engaged toddler she is now.

We were exceptionally lucky to get placed into an early intervention centre very quickly. Everyone around us has been helpful, supportive and ready and willing to do what is needed to give Heidi the best start in life. The experts map our path and guide us and together Heidi, myself, Ralph and Annie walk that path with our family and friends giving us the encouragement we need to keep going (and that includes you my online buddies).

Heidi herself works with us and tries so hard to learn what she is being taught, often she exceeds all our expectations driving the learning process faster than anyone expected until we are all running to keep up with her.

We’ve not had the discrimination or battles to get treatment/help that so many others have faced, in that we are blessed. Our family, friends and the professionals we work with are all amazing and in that we are also blessed.

12 months ago we faced huge frustration simply trying to communicate concepts like asking for a drink when thirsty or something to eat when hungry.

Now we know the magic words – visuals, transitions, schedules, sensory input, vestibular, proprioceptive, and many many others that make life so much less frustrating for all concerned. We even have the joy of hearing other magic words come from Heidi “I love you”.

Such massive changes to our world, yet in so many ways life continues along normal lines, Heidi is at Kinder, just like other children her age. My girls colour in, paint, stick, glue, sing, dance, watch Barbie DVDs and play and fight together like siblings the world over.

12 months ago Heidis finger people would have the same conversation repeated over and over again.

“Ouch”
“R u ok”
“i’m ok”
“ok”
“ouch”

Just recently her finger people put on a play for me, she got behind her dolls house, used it as a stage and they did a little performance.

She started off with

“Once upon a time, in a little king.”

Told me a story about a Princess going to a playground.

Creative and funny.

On the 11th of Feb 2008 my girls height and weights were:

Heidi 3yo
Height - 102.50cm (= 3.36 feet)
Weight - 17.10kg (= 37.69 lb, lbs)

Annie 4y9mo
Height - 110.20cm (= 3.61 feet)
Weight - 19.60kg (= 43.21 lb, lbs)

Had a check up with the paediatrician today.

Annies blood test results came back with low iron but not too low and low white cell count which we have to get checked again in a couple of months. Her platelets were good and clotting tests came back normal. Negative for gluten intolerance. When we get the white cells checked again we will do more obscure clotting tests. We are now doing a stool test for H.Pylori to see if that is causing the reflux.

Annie 5yrs 1mth
Height - 117cm
Weight - 20.1kg

Heidi 3yrs 4.5mth
Height - 109.5cm
Weight 18kg

Annie is on the 98th percentile for height and weight, Heidi is as usual off the chart

Paed was happy with what we are doing with both girls. Just have to keep an eye on Annie’s bruises in odd places (upper thighs, lower back).

I try to do most of my grocery shopping at Preston Market, it has everything I need in the one spot - ALDI, Safeway, meat market, deli’s, fruit and veg market. The pizza from Vinnie’s pizza is the best I’ve ever had in Melbourne (not the best in Australia because that is my Mums Pizza :grin:).

Preston Market is a fantastic place to shop, especially if you love food and love to cook, lots of fresh ingredients, real deli’s and interesting / unusual foods available. But it is a busy place to shop, we drive over to Preston from about 30 minutes away and we are not the only ones. Additionally the market is in the centre of Preston, has a train station attached and is near a local TAFE (tech college). It is a busy busy busy place.

When we lived in Preston I’d be at the market almost every day it was open. The girls and I would walk down, we’d visit the library, go to the post office or just window shop. Heidi would get upset if we stayed too long but I was able to make shorter more frequent visits because we lived close so it was not really an issue. We moved from Preston when Heidi was 18 months old, before we knew about the autism and I always assumed she got upset at the market because she was tired and ready for a nap.

Last week we went to the market to do our shopping. My good friends S&J came along to help and it makes a massive difference when they are there, the girls are so happy and excited to see S&J that they are very well behaved.

This visit Heidi kept asking to go to the toilet, 5 times in 1 hour. We’d get into the toilets, she ask repeatedly to close and lock the door (close it, close it, close it. Lock it, lock it, lock it). Once the door was closed and locked to her satisfaction she’d sit on the toilet and say “shhhhh, quiet” and sit there not moving and not doing anything else either.

I realised (eventually) that Heidi needed time out from the noise of the market, the constant movement of people and at her height she really would have felt surrounded and snowed under by all the bodies.

Its not just the people at the market, there are so many different sounds and smells.

Annie gets very distressed every time I venture into the meat market and I made a brief stop just inside the doors this time to get some chicken. This time round both girls got a little cranky and Heidi was very insistent it was time to “do wees in da toilet”.

We get home and as usual the shopping stays in the car for hours (thank god for cold bags) whilst I get both girls settled down and calm Heidi, then I bring the groceries in and try to unpack often while carrying / hugging Heidi.

This is normal for after grocery shopping and I’ve not given it much thought as this is just the way it has happened for the last 1.5 years. But this time I thought about it and realised that something has to change because the whole experience leaves everyone feeling sick and tired by the end of the day.

My solution was to do all my grocery shopping online until Annie is at school next year then try and reassess the situation. But talking to Heidis teacher at her Early Intervention Centre we’ve come up with a different plan - Retail Therapy.

Each week I’m going to take Heidi to the Preston Market. The first week we are just going to get Pizza and then go for a little walk to a nearby park (quiet place).

Second week we will go get Pizza and visit our favorite fruit and veg shop to buy one apple (or other piece of fruit that Heidi chooses) and then go for a little walk to a nearby park (quiet place).

Third week again Pizza, then the fruit and veg shop and we will get one apple and one other piece of fruit and then go for our walk.

Each week we will slowly build on what we have done the previous week and hopefully together we will work out ways to help Heidi cope, sort of desensitization therapy. I’m still going to do my grocery shopping online because I can’t figure out how to fit in retail therapy and grocery shopping into the one week.

Smiley Saturday time again. If you want to join in then click on the Smiley Saturday link above and head over to Lightenings to enter your Smiley Saturday link.

This week Lightening has suggested using as our Smiley Saturday theme the idea that we need to care for ourselves more. Taking care of myself seems like a good reason to smile.

One big way I’m taking care of myself more is not doing Kinder duty as often. This week the Aide started at Heidis kinder which means Heidi and the other two special needs children in her class have someone on hand with experience who can help them.

My health is still problematic but I’ve started to get test results back and we’ve been able to rule out a few things that were worrying me. Plus I’m working out how to balance my diet to keep the latest flareup under control. Whilst the Crohns flare up has not really improved it has not gotten worse either and I’m working out how to manage with it as it is, sort of stability within the instability. The head cold and asthma have mostly gone away for which I’m very relieved.

I was flicking through TV stations 20 minutes ago and realised that the latest Barbie movie is on channel 7 today (started 10 minutes ago) AWESOME! I now have a guaranteed hour of children glued to tv so I can get some precious me time. Then once they get wriggly I should have enough energy to take us out to the park and run off those wiggles.

Reading over my journal for this time last year when we had our week from hell, in a period of 7days the following happened:

Ralph had just started a new job.
I was applying for that camp managers job.
Mr H passed away.
SIL L went to hospital.
One of the playgroup mums had a baby.
Got Heidi’s diagnosis.
Tante Anita passed away.
2 funerals to go to.
Lots of time spent at FILs house.

Life is super busy now but it is so much better than it was 12 months ago. That is something to reflect on and to maybe think that in 12 months time it will be just a little bit better again.

Edited to add another reason to smile is Stitch Pinks latest giveaway. Head on over and leave a comment to enter, you could win the kit to make this -

Heidi and Annie working out a computer game together.