Tantrums again

This week has been really bad for tantrums.

Saturday: big one before bed time. Why? He was having too much fun with grandparents and didn't want to stop.

Sunday: big one before church. Why? Dunno! Two more throughout the day - can't remember why.

Monday: At least one. Can't remember why!

Tuesday: huge wobbly at the Early Intervention Unit. Again, he was having too much fun and didn't want to leave. It was very embarrassing to have the school principal come outside to find what all the noise was about! Two more during the day as well.

Today: two so far. Daddy went out before school, so Bright Eyes had to accompany us to drop off big sister. He didn't want to, and ran away and screamed. I had to carry him part of the way.

Our 'activity' for the morning was going to post letters two blocks away. First he wouldn't leave the house, so I picked him up protesting and plonked him on the steps. Then I held him tight on my lap to calm him down.

By the time he was ready to walk (20 mins later), one shoe had been kicked off and there was no way it was going to go back on again. I decided a shoe was an unnecessary luxury and we walked anyhow - him with one shoe on, one shoe off! We got there posted our three letters and headed back, but before we crossed the street to our house, he decided he wanted to walk to the video shop and chucked another tantie. Thankfully Daddy was home and could give me a hand getting him into the house, where he took another 20 mins to calm down again.

This is like the bad old days. What is going on?

School?

We dropped in to the Early Intervention Unit yesterday in Moss Vale. It's a service that provides intensive support to children with delays in various areas. It's kind of like preschool, but in miniature, with two staff to only eight children.

We're trying to work out what Bright Eyes is going to do next year and especially in terms of preparing for school in 2009.

The Early Intervention Unit looks great (and it's free!) but I have a feeling that Bright Eyes time would be better spent focusing on RDI.

I found the quote below from Dr Gutstein in this week's RDI newsletter:

"By having school take up all the the child's emotional and attentional resources we leave nothing for the most critical objective.

What we know is that unless we directly address the core areas of Autism Spectrum Disorder, the prognosis for quality of life is very poor.

Imagine if we were talking about cancer and someone said they were so busy with homework they had no time for chemotherapy."

We've got some decisions to make!

Sausages

There was a bright side to the difficult tantrum day. And that is that Bright Eyes ate about two bites of chicken sausage at dinner time.

I found a supplier of sausages that have nothing but organic meat, filtered water and almond meal in them. The butcher makes them for his autistic child and sells them to others who need them. As sausages are usually full of preservatives and often gluten, this is a great option for parents.

I ordered a tray of beef, chicken and lamb sausages last week. Unfortunately Bright Eyes rejected the beef ones straight up when I gave them to him the other day. Today I tried chicken though, mixed in with his regular sausages. He ate one bit and spat it out, but I removed it calmly and encouraged him to keep eating.

When I took his plate, I noticed that only four bits out of about eight were left of the chicken ones. So he did eat some!!!!

I think I might dance around for joy.

A few forward, a few back

For every number of positive posts, there has to be a negative one, and today's is about tantrums.

For the last week, Bright Eyes has been refusing to go with me out of the house to anywhere except for preschool.

For the most part I have been able to get around this because my husband mostly works from home (he's a church minister) and I can leave him there if I have to.

However, this morning was Sunday and Daddy was already at church when Bright Eyes decided that there was NO WAY he was leaving the house or putting on his shoes, or changing his pull-up, or brushing his teeth, or or or.... you name it.

My options were:
1. Give in. But that's not really an option. We all go to church. It's pretty much a non-negotiable in our house. Besides, it's not fair to deprive Big Sister of her time with friends at Kids church. Bright Eyes had to go.

2. Ring for help. Not really an option either. Daddy was busy organising for the service and no-one else except me can handle Bright Eyes. Someone else could have taken the other children and I could have stayed with Bright Eyes, but that's not really an option either - see no. 1 above.

3. Wait until he calms down and then go. Possible, but see no. 4 below.

4. Take him and count on him calming down once we're there and settling right in.

I decided No. 4 was the best option. I knew that it could take up to half an hour to calm him, either here or there, but I knew that if I tried to move him again having calmed him here, he could very easily explode again, so calming there was the better option.

So, with deep breaths, and not a few swear words going in my head (sorry everyone) I organised the other two children, packed the bags and the snacks, and loaded the car with everything, having decided that our usual walk would be impossible.

I then walked calmly into husband's office, confronted screaming boy, picked him up kicking and squirming, carried him out of the house and plopped him in the car.

The next dilemma was the seatbelt. He wouldn't put it on. I'm not going to tell you what I did because it was illegal, but it was the best of many bad options. Needless to say, I was very slow and very careful, and we all arrived there ok.

Once there, I pulled right up next to the door of the church and let Big Sister out. Then we just sat and waited. After about 10 minutes of screaming, he let me cuddle him. Then it took another 10 minutes of huffing and puffing to talk about putting shoes on and then another 5 minutes to think up creative ways to get out the door of the car without it seeming like we were getting out of the car.

Once out, everything was fine. He had a lovely time at church and was fine, until... the next tantrum in lab time... and the next one before bath....

What is going on? I feel terrified that I've done something bad or wrong and he's going backwards again!

Rock stars

Bright Eyes and his big sister were in a band today. She organised it all of course including the fabulous fire headdress, and took the lead guitar role for herself, but Bright Eyes was pretty happy being the drummer. They let the baby play the piano. Everyone had 'shades' and they were all very cool.

Supplements

You might be interested to know where we're at with supplements and medications right now.

Here's the daily routine.

Breakfast:
He has digestive enzymes with his meal.
He has 3 ml of a homeopathic chelation therapy and 5ml of zinc drops in his glass of filtered water.
He takes a kiddies' vitamin supplement.
I spoon on a couple of blobs of goat kefir (like yoghurt) with his cereal and goats milk.

Lunch:
Digestive enzymes
In his tomato sauce, I mix a couple of capsules of Algotene, which is a nutrient supplement, based on seaweed.
I try to squeeze a couple of caps of fish oil over his food surreptitiously so he won't notice.

Dinner:
same as lunch
goat kefir for dessert, when he'll accept it.

In addition
I also mix his foul-tasting zinc undermethylation supplement with dairy free chocolate - he has a couple of bits a day.
He's currently taking a homeopathic remedy to try to clear his bowels.
He has a bath with epsom salts (magnesium sulfate) most nights.
After bath we squeeze on two capsules of evening primrose oil and rub into his back and tummy (omega6)

If I get all that lot in in one day... I'm a champion and I give myself some chocolate and go to bed.

Preschool meeting

I had a meeting with the preschool today about Bright Eyes' progress.

In a nutshell, after the first two terms, everyone is very very happy.

Socially: He's enjoying people and relating to all the children and knows everyone's name. He's learning not to stand to close to people, and is asking other children for help if he needs it. Lots of the bigger girls take good care of him and play with him. (One little girl went home to tell her mother that she was so pleased that Campbell was doing well at something...)

Independence: He needs much less adult help in doing things like getting his lunch or his jacket. And in the last two days, he took himself to the toilet three times! Wow - toilet training might be possible!

Skills: He's definitely improving in his fine motor areas. At the beginning of preschool, he almost never used his hands at all except to hold objects (trains mostly) or match similar sized things up with each other. Now he's regularly painting and drawing (with encouragement), squishing playdough, and even beginnig to use scissors. Gross motor is good too. He follows along and does all the actions in the exercise times, whereas at the beginning he would do the first couple and then space out.

Group time: he loves stories and sits happily for the whole of group time. When he began, he needed to have a train or similar toy with him to keep him happy, but that's not necessary now.

Language: this is where he falls down. We agreed that he has delayed receptive language - in other words, he doesn't understand a lot of what we say to him. Correspondingly, his expressive language is stilted and still quite scripted. He mixes up his pronouns constantly, gives odd answers to questions and comes out with extraordinary things at strange times.

Our teacher knows that RDI does not focus on language skills per se. RDI follows the idea that if we do the work of reteaching the brain to relate correctly, the language should follow along. In any case, language is something that should be worked on secondary to the relationship skills.

She did ask, however, if we would consider going to a speech therapist at any point. I assured her that yes, probably we would end up at speech some time, but I'm not that worried about it just yet. Anyway, Bright Eyes name is down on the list for the public speechie at the local hospital, so it's a matter of waiting...

I asked them to be aware of their declarative language versus asking questions all the time, and to sometimes try to do without language altogether when relating to him. When I went to pick him up from the other room, I cleared my throat and Bright Eyes looked up immediately to see what was going on. The teacher saw me do it and understood what I was talking about.

Something that I have to start doing is to think about where he is going to go to school after next year (starting in January 2009 - the Australian school year is the calendar year for overseas readers.) That's a scary thought!

Sometimes I just don't understand where things come from

Road signs are a particular favourite of Bright Eyes. He has an odd little script that goes with them too. If for example, we saw this sign on the road, he would say, "Forty sign red circle shape zero dancerr" in one quick breath, and with a very pronounced r sound on the end. It would take far too long to explain where the zero dancerr bit came from...

Mum and Dad were here today. Bright Eyes turns four in about three weeks, and Mum was talking to him about it. What follows is an approximation of the conversation.

"How old will you be on your birthday?"

"Bright Eyes is birthday cake."

"Yes, you'll have a birthday cake. Yummy. But how many candles will you have on the cake?"

"Birthday cake has candles."

"You'll have four candles on your cake. You'll be four."

"Bright Eyes three."

"Yes, soon you'll be four. You'll have your birthday and you'll be four."

"Soon four. Bright Eyes birthday."

"It will be Sister's birthday too. How old will she be?"

"Not sister birthday. Bright Eyes birthday."

"First yours, then sister's birthday. How many candles will she have on her cake?"

"Traffic lights."

Interested in me

In the last few days, Bright Eyes has been noticing what we've been doing, and asking us about it.

For example, today I was reading a book. He looked at me and said, "Is your book good Mum?"

"Yes" said I, surprised and pleased.

**************

I often call Bright Eyes a 'little duffer' when he's being silly or cute. We have a good laugh about it together.

Tonight he said, "I'm a little duffer." Then he looked at me and said, "You're a little duffer too Mum."

"No," I said, "I'm a big duffer."

He grinned, then looked at his little brother and said, "He's a baby duffer!"

Not wanted

I picked up Bright Eyes from preschool today, just when the group was heading outside for some active play.

He saw me and smiled, but then said, "go away Mummy, go away!"

Some might be hurt. I was delighted.

Crisis mode

Something that's really important when we do RDI is to get out of 'crisis mode'. Slowing down helps this. And getting through grief stuff also helps.

Being in perpetual crisis is exhausting and unworkable. You can't think creatively, and you have no energy to do anything more than react. RDI is about going beyond the reacting phase, and acting intentionally with your child.

I think we're getting there. And I really liked this quote from Dr Gutstein, the brains behind the program:

"You know you have turned the corner when, instead of spending all of your time worrying about what your child will do next and how you will deal with it, your child is spending all of his or her time wondering what you will do next, and how he or she will deal with it."

Objectives

One of our current objectives goes something like this: he should be able to make a comment on something he sees or hears or experiences, for the purpose of finding out our perspective on it, and then incorporate our perhaps different perspective with his own.

Yesterday we got out of the car into a very windy and cold atmosphere. Bright Eyes: "I can hear the beach." Looked at me.
Me: "Oh, no, that's not the beach. That's the wind making the noise."
Bright Eyes: "Wind making the noise."

I think he can do it!

Cooking

Bright Eyes and his sister made brownies this afternoon. It was her idea, but Bright Eyes stuck with her the whole 20 minutes or so that it took to find the ingredients, put them in, and mix it up. I could see he was desperate to taste the mix, but unfortunately we didn't make them gluten-free!

Afterwards, he hung around the kitchen, and I got him to help me make his 'heart chocolates' with his medication in them. He broke up two bars of chocolate, put it in the bowl, put it in the microwave with help, and then mixed in the icky stuff with me. He even tried to spoon it into the heart moulds. Beautiful!

Playgroup

Today we hit playgroup again. The weather was just too cold outside for our regular Wednesday Walk, and I didn't want to stay in, so out we went.

It was much more successful than last time. I was pleased to see Bright Eyes playing appropriately with a whole range of toys, including a home corner.

Then there was a beautiful five minutes where he was playing next to two little boys of a similar (or younger) age. They had a car each and were taking turns to go up and down a ramp toy. No language was involved, but they were cooperating and aware of each other and regulating accordingly.

Add in a burst of sunlight through the window, and it made a scene which I wish I'd caught on my camera.

RDI Consultant

We met with our RDI consultant this week to catch up and go through a few things.

(My mother kindly looked after the two boys so we could have some proper chatting time. Thanks Mum!)

It was a useful time. We went through a lot of the Stage 2 objectives and talked about whether Bright Eyes was getting them or not. We ticked off a fair number together and have a few more to work on while we wait for our next big assessment in September.

It is so helpful having a consultant. I often feel doubtful about what I'm doing ("Is it right? Am I ok? Is he doing ok?") so it is great to have someone who can affirm, or tweak as necessary.

Camp

Bright Eyes came on a camp with me and the baby for four days this week.

All in all, it was relatively successful. He had two big tantrums and I managed to head off two more by not requiring him to do some things I would normally have expected of him. For example, he didn't use the toilet the whole time. And I didn't make him have a bath. (He was a bit stinky by the time we got home...)

He was very interested in the 40 teenagers who were at the camp, and was keen to chat to them, although the encounters were not entirely successful as they didn't understand a lot of what he was saying, and many people asked him questions he didn't understand or couldn't answer.

I was struck by the difference in the way we talk to him, and the way most people start a conversation. We are still making a huge effort to use declarative language, but the majority of talk by others to him was instrumental and imperative.

(Of course, it's not their fault - that's the way most conversation with three year olds would start! But it was interesting to notice the difference.)

I noticed that he repeated himself constantly, looking for reactions from people. For example, he would look around the table at dinner and say loudly, to no one in particular: "I watched TV." When he got no response, he'd say it again and again, until I stepped in and reacted to his satisfaction.

Since we've come home, he has stopped this to a fair degree.

One nice thing was the fact that he slept in a bunk bed all on his own for the four nights. Back home, he has started in his own bed every night so far, but has ended up in ours... again.

Building memories

Something RDI tries to focus on is building what it calls 'episodic memories'. It's more than just remembering something that happened. It's remembering the emotional reaction that went with it.

For example: not just "we went to the park today" but "we went to the park and I felt sad when I fell off the swing"

Bright Eyes is beginning to have these sorts of memories.

Yesterday his little brother and he were jumping on the bed and giggling their heads off. I said "oh, you're both so naughty" with a big smile on my face. They laughed even more.

Later that evening, I was talking to him as I usually do about what we did that day. I said, "you were being so naughty, jumping on the bed," and straight away he grinned ear to ear and started to giggle. "Naughty boys. Jumping. Two boys jumping." He laughed and laughed.

As he lay in bed, I could hear periodic giggles before he went to sleep.

That's episodic memory.

Kitchen happiness

Another great day. Wow. God really does answer people's prayers.

Today Bright Eyes was helpful and cooperative in the supermarket. He found things on the shelf and put them in the trolley, following my point and gaze, spoke to the cashier, waited happily in the chemist, and answered the shop assistant's question of how old he was.

He was friendly to our lovely helper Laura, greeting her by name. We all went for a walk to the park to feed the ducks. He walked a little ahead of us on the side of the road, but then stopped at the kerb and looked around for us to catch up before we crossed the road. He played with a little girl at the playground and copied the way she went down the slide. He came home calmly with no tantrums.

He coped with extra unexpected visitors at lunchtime with no worries, and even said "Goodbye David" at the end when they left.

He played beautifully with big sister all afternoon, running, jumping and dancing with her. I put some music on and started to do some actions, which he copied happily.

Lab time was quite successful. I did some of the same things as yesterday, but tried not to let him control it or turn it into a script. We had a few little standoffs but nothing major, and he came out with more original thoughts and remembered the new word 'tears' from yesterday.

The piece de resistance, however, was at dinner preparation time. I had my apron on and was starting to get things out. He came in and asked "What are you doing, cook?" I answered, "I'm cooking. What are you doing?" His reply: "I'm cooking. Put on cook." (That's his word for apron). We grabbed his apron, and he brought a chair into the kitchen to stand up on.

He got out the vegetables that I asked for from the fridge. He tried to cut, but couldn't, so asked for help. I cut and showed him how to put the pieces in the saucepan. Then we filled up the pan with water, and together put it on the stove. He helped me place the meat on the grill, and then helped me set the table.

RDI Implications

The kitchen episode is the most 'helping' that Bright Eyes has ever done. The greatest number of different jobs, the longest time together, and the most interest shown, with no deliberate obstacles thrown up.

Importantly, it is probably the only helping he has ever done that was not initiated by me.

An important part of RDI is getting a good 'guide-apprentice' type relationship going. Six months ago, this was pretty much impossible. He was just not interested in doing what I did at all.

Seeing my younger baby (now 20 months) who just loves to do everything I do, and who tries to take over when we empty the dishwasher together, comes as a good reminder of how neurotypical children love to imitate their parents.

So guide-apprentice stuff has been progressing very slowly. Sometimes I can get Bright eyes to help me put the washing in the machine, or empty the dishwasher, or water the garden.

But today was completely spontaneous, easy and, dare I say it, 'normal'.

I feel terrific!

mud puddles and original thoughts

I was dreading lab time* today, but it turned out to be so delightful that I just had to document it.

I took in a 'megasketcher' toy which we have enjoyed before. I started out by looking at him and drawing circles on the writing surface with my finger. He got the hint, picked up the 'pen' and drew circles around and around just like I did. We did that a few times very happily.

Next I said, "My turn" and he gave me the pen. This time I drew a simple shape, and gave him back the pen saying "your turn". He looked up at me and then traced, in a very wobbly way, around my shape. We both looked quite happy, so I drew more shapes and he traced them. Then he asked for a few different shapes, so I drew them and he traced them.

We went on trace around each other's hands, plus he traced over the letters of his name. This is the best pen work that Bright Eyes has ever done!

After 15 minutes, I took the pen and drew a round circle. "It's Campbell's face" I said and waited. He said, "eyes" so I drew in the eyes. Then "nose", and then "sad face".

At that I made sad sort of noises and pretended to cry. His face crinkled up too in imitation. I took the pen and drew little tears down the cheeks of the face. "He's crying" I said and waited. "Wet", he said. "That's tears" I explained. "Tears" he said.

We pretend cried for a few minutes, and then Bright Eyes said, "I fell over. I hurt my head." I made appropriate ouch noises. Then he added, "fell in the mud.... eeergh". I joined in with disgust sort of faces and noises. "Yucky! You're muddy!" I said.

After a few more minutes of enjoying the ideas of falling over, feeling sad and being dirty, I grabbed one of the little shapes that come with the megasketcher. I pressed it on to the face, made a smudge and said, "Look - it's all muddy!" He took it and made more smudges. We took turns doing "muddy on eyes, muddy on ears" and covered the whole face! Then we did it again, this time on a new picture of Bright Eyes and his sister together. It was great fun.

By the time we had completely obliterated the pictures of the two faces by covering them in smudges, Bright Eyes said, "They're hiding" and then "they're in a cave."

These are original thoughts, people! This is all good!

At this point I switched games and went with the cave theme. I got him to hide under our little table while I crept around the room singing the 'bear hunt' song.

"I'm going on a bear hunt, I'm going on a bear hunt... oooh! there's the cave. OOOOOOhhhh, there's a bear, ruuuuun!" At which point he emerged from the cave smiling his head off and kind of chased around a little bit.

We took turns to be a bear, and then we switched animals. He was a lion, a tiger, a crocodile, and then (his choice) a sheep, cow, duck, pig, dog and cat. Not sure we have the whole wild animal thing down pat, but I don't mind.

After ten minutes of playing we stopped lab time and went back out to the lounge room. He ran up to Daddy and said, "We animals Dad. Play some games!"

It was a hit! In fact, he enjoyed it so much that he tried to get me to go in again to play 'animals'. And at bedtime, when we talked about what we did today, he said, "animals" and proceeded to list the species we had played.

Later in the afternoon in the kitchen, we rolled out some cookie dough I had made last night and cut out bone shapes (cute cookie cutters!) and ginger bread men. He really enjoyed it, and helped me put them in the oven. He also tried the cookie dough (first time) and said, "I like it. Yum." He was waiting for the cookies for the next hour and talking about them. And at bedtime, he said, "made chocolate bones".

A very very positive day.


*Lab time is our half hour per day in a closed door room with no distractions, doing things together and focusing on developing relationship skills.

New shoes

It must have been the prayer requests that I sent around yesterday... because Bright Eyes had a great day.

First off, we put on his new shoes. These are shoes that have been hanging around the house for at least two months. He is notoriously fussy about what he wears and will not wear anything interesting (no pictures, patterns or cute colours) or new. So given that his current shoes are getting too small I knew it was going to be a hard job to put new ones on him.

For a few months I've been pointing out the shoes, holding them up against his feet ("No no no no no no") and talking about them. Yesterday I "lost" his old shoes and tried to put the new ones on, but he ran screaming into the other room, so I miraculously "found" the old ones again to reassure him.

Today though, we managed to get one new one on. At that point, he got upset, but not uncontrollably. I stopped him from pulling the shoe off, got him on my knee and gave him a cuddle for about five minutes. Then I picked up a few favourite books, and we read together for a while. I got the second shoe on when he was happy, and again did the cuddle and the book routine so he wouldn't take it off.

At that point, he was still protesting mildly, so I kept him close to me for the rest of the morning before we went out. If he even had a minute alone, I figured he would have taken it off, so he didn't get a chance.

End result: the shoes stayed on all through church. He walked there and back in them and didn't complain. Hooray.