Stuff With Thing

I’ve put together a little social story for Heidi about Annie and I going away.

After some thought I kept it very simple. I put in a table with the 3 days and 2 nights we will be away. This way I am hoping (if hubby remembers) that at the end of each day / night that square can be crossed out. This should give Heidi a very visual way to see when Annie and I will be back.

It isn’t the best social story I’ve every done because I left it to the last minute and I realised after printing it that I didn’t use the bigger kid friendly font I usually use.

Here is a .pdf copy of the social story:

Going-Away

She is wonderful, amazing, funny and perfect just the way she is.

She is autistic.

She is not damaged

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.

Coping With Autism

Fantastic interview about getting your child diagnosed and different therapies.

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.

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.

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.

We are having a family party at our place today for Annie’s 5th Birthday. Mothers Day with the in-laws, should be good, we like each other and it is coming up to the anniversary of my MILs passing away so we don’t want FIL to be feeling alone (especially on mothers day).

But our home being invaded by 20+ people does leave us with some problems - namely Heidi and how will she cope.

I’ve emailed the family -

quote:

---

A few requests.

To make Heidi feel more secure with so many people around I need to ask your help in a couple of areas.

1. the girls bedroom is a no-go zone. This is Heidis safe place and I need her to continue to feel safe there so that she sleeps at night. We will be putting a lock on the door but if things get too heated the I will have to unlock the door so Heidi can hide out in there away from everyone. If you can prompt your children before hand to be aware that they are not to go into the girls bedroom I would greatly appreciate it, as it is usually easier to enforce this rule if everyone knows in advance.

2. Heidi has the hyper-sensitivity to certain noises so common in those on the autism spectrum. In particular high pitched noises can cause her great pain which results in unpleasant meltdowns - I’m talking here about things like the mosquito ringtone, 80s pop music, other childrens screams (when constant and on going). Please be aware of this, I know there is not much we can do in some cases (ie crying child) but in others they are avoidable (high pitched ring tones etc).

3. If things get too much for Heidi then either Ralph or I will pop her in the pram/car and go out for a little while with her, thus allowing the part to continue. We don’t anticipate needing to do this but just so you know there is a plan B.

Thank you so much. We are looking forward to seeing everyone on Sunday.

---

After I did that my next priority was a social story for Heidi. I don’t care if the party food is not ready in time, if the house isn’t clean, so long as I get that social story ready and Heidi fully prepped.

and here in all its glory (well minus pictures because they’d take forever to upload) is the party social story. Basically each line is a new page complete with pictures to illustrate what the written words are saying. It is much longer than anything I’ve previously attempted.

[snip] list of people who will be at party names removed for privacy [/snip]

one of those days

From Autism Vox:

“So I wasn’t surprised to read that the Mosquito—-a black box that emits a high-decibel pulsing noise several times a second over a 15-mile radius—has been having “serious effects” on autistic individuals. The Mosquito is being used by a number of retailers in the UK to keep teenagers from loitering around, on the grounds that only those 25 years and younger can hear it. As reported in today’s Guardian, the Co-op has said that it will cease use of the devices and instead play Mozart and Barry Manilow music to (it is hoped) keep away the teenagers.”

I wonder if something like that is what sets Heidi off when we are out shopping. Have worked out that certain music (80s Pop) makes her scream and cover her ears, wonder if that is related to pitch or just the sheer horror of 80s Pop? Christmas is always difficult and now I’m pondering what it could be about the constantly repeating Christmas carols that might set her off - or is it just the increase in sound, more people, more movement, more sensory input on every level.

The shaving brush. It doesn’t seem inherently evil, there is nothing there to say ‘I will cause great grief and destruction”, it looks so innocent.

Yet grief and destruction follow in its path.

“I painting”

“I a Daddy painting”

Which leads me to wonder why soap (which now covers every surface in our bathroom) is so hard to clean off, I mean we use it to clean ourselves. Why can’t I just wipe it off the walls, floors, doors etc as easily as it washes off my hands?

Annie went to a birthday party yesterday. She wanted to take a gift for the 1yo birthday boy but the invitation said ‘no gifts’. So we compromised and Annie made him a rattle - we 1/3 filled an old drink bottle with rice. Then I sealed the lid on with colourful childrens bandaids and Annie decorated it with stickers. She looks a little crazy in the picture but was very proud of the end product.

And I got a little more stitching done. Been very productive the last couple of days. Keeping up with the laundry, dishes, doing stuff with the girls and even getting some stitching in - plus I caught up on all my blogs and commenting. But I’m lacking in sleep and living on coffee. Not sustainable but it is nice to feel all caught up for once.

Well that is enough of my mad mutterings. I’m off to try and work out some kind of menu plan, seeing as it is Monday and all.