Change, & Funny Words

I am coping better with E's distress when I leave him now or can't do something for him. I have started to think about it like this: E is a kid that does not like change. It upsets him a lot when things don't go the way they usually do, and when people do things they don't usually do. This is why he flips out when I go out on my own, or do anything on my own, because he is used to having me around. I am not abandoning him or ignoring his needs. It is just hard for him because it is different. The more I do it, the less different it will be become, and he will gradually be less and less distressed by it. It is not my fault.

So I just keep telling myself that when I am feeling close to caving, and it helps so much. I need to feel like it is not my fault, which gives me the strength I need to just do it.

And it is working for him. I spent yesterday afternoon pampering myself and christmas shopping while the kids stayed home with husband face. He was so upset that I was leaving, but he had a great afternoon with his Dad and I came home to a happy house. Then, he was mucking around in the big bed at bed time, so we said, if you do it again, you have to go in your own bed. No negotiations. So he starts doing somersaults and husband face takes him to his own bed. He was screaming and crying, kicking the walls and his Dad. But he fell asleep. And for the first time in his 4.5 years of life, when he woke up (as he does many times during the night) he called for his Dad and not for me. I am so excited and happy about this that I am awake at 6am and nobody else is!

Moving on to something else..
E has a wonderful vocabulary and great expressive language, but he says some words wrong. He can't seem to help it and doesn't seem to recognize that he is using the wrong word in place of another, even after we have corrected him.
For example, he says
"lion" instead of "line"
"wizard teeth" instead of "wisdom teeth"
"crutz" instead of "crotch"
"eject shop" instead of "reject shop"
He also says "gravy yard" instead of "graveyard." We passed a graveyard in the car the other day, and he was asking what the tombstones were. I was trying to explain without freaking him out, and M pipes up "Don't want gravy on chips! Want sauce! Tomato sauce!" and E was like... 'Wtf? Why is she talking about sauce and gravy when I am talking about a graveyard?' So I was trying to explain that he says "gravy" instead of "grave" and he just had no idea what I was talking about. And she is yelling "want chips now! No gravy!" Fark it was flipping hilarious, but maybe you just had to be there ;)

Doctor, Doctor!

We saw our pediatrician today for the second time. He had us fill in an evaluation that I now cannot remember the name of! Gr! Something about identifying developmental delays I suppose. So he looked at that while we were there but did not comment much. I am hoping he will CC us the letter he sends to our GP as he did last time. We also showed him the results of E's speech assessment, which said she did not test his receptive language ability (only expressive) due to time constraints and non-compliance, so he said that may be worth revisiting further down the track.
He seemed concerned mainly with E's sleep. He has nightmares, night terrors and terrible separation anxiety throughout the night. We told him that we had followed up on his advice to contact Redbank House who I have mentioned before. They deal with child and adolescent mental health "stuff." They can't see us until March, but he says that is actually quite a short wait so that's good. He said they should be able to help more with the sleep stuff.
He said obviously we should just keep treating it as "high functioning autism" and follow the recommended guidelines for early intervention which we are doing.
He bought up medication again but agreed with us that it is not 100% in E's best interest to go down that path (yet.)
He also asked if we wanted to do blood tests for genetic testing, looking for abnormalities on the genome that may show that there it is a genetic factor. He said it is helpful from an academic point of view, but considering E's anxiety, would likely cause him extreme stress (yes indeed it would!!!!!!), and it isn't going to help us in treating him. So we have that on the back burner for now. Autism is in my family so there probably is a genetic factor, but like he said, not worth the stress of looking at that now.

So that was that and we see him again in 6 months. I think husbandface was slightly disheartened, but I didn't expect much more than what we got out of the appointment. E was less distressed than he was during the initial consultation so if nothing else, we have at least proven to him that it wasn't as bad as he had been imagining for 2 months.

In other news, E is back on the sticker chart wagon! Hooray! He placed the last sticker last night and after careful consideration, decided he would like an alarm clock for his reward. Just what every 4 year old wants?
I thought we would be looking for ages, but he spotted one he loved in the first shop we went to. To be fair, it is kind of awesome!

The Sweetest Things

I was tidying E's room earlier tonight and opened one of his little cupboards. I took a photo of what I found. The top shelf has all the deodorants and perfumes from the whole house. He loves smelly stuff and loves smelling nice. The second shelf has photo albums, mainly baby photos of E. The third shelf has buttons and clasps and whatnot from a special button box of mine that used to belong to my Nan. I didn't realise he had taken the photo albums or the buttons, but to see them treated with such care makes me want to weep. So sweet. I just shut the cupboard and didn't say anything. I don't mind if he wants to hold on to them.

Moving On

We have decided to stop seeing our OT and start seeing someone with more experience. Unfortunately, we don't have an assessment with this more experienced OT until February. So for now, we are just seeing the psychologist, and have a follow up appointment with the pediatrician next week.

Things have been going reasonably well. E is coping really well with my newfound firmness. I had him doing jobs to earn the money to buy the little toy he wanted, and we have taken down our Christmas tree after our warning were ignored and he would not stop messing around with it. As anticipated, the reward charts have lost their impact, but we are keeping it up, hoping he will regain some enthusiasm.

Speech Results and whatnot..

I have not been coping beautifully the last few days. I am trying so hard to be assertive and consistent with the kids, but in doing that, it is forcing me to look at why it is so difficult for me to do that in the first place. I have been googling things like "how to unspoil your child" and so on. I hate that I am responsible for having made things harder, but the self-awareness I have does not fix the problem. I recognise that I have problems saying "No" to the kids, but have no idea how to stop myself. Perhaps it seems self-indulgent to talk about myself so much here. I have read many blogs and heard stories from many people, and they talk about their child and their child's condition, and not so much about themselves. But I am right at the centre of his universe and my mood, my history, my personality, all impact upon his life. Perhaps this blog should be called "parenting with a mental illness" or something. Who knows.Moving on. We got our results from the speech assessment. E scored at least average or above on all of parts of the assessment, and she has not recommended further therapy. So there we go. We aren't going to pursue further speech therapy, and have actually made the decision to find a new occupational therapist. We are very happy with the psychologist for the time being. And as promised, I have some photos of the visual charts we made with E. We did a hand washing sequence, and have a poster of house rules as well, which is proving to be handy as we refer to them often, and go through all of them again with both kids whenever they forget what is expected of them. I tried to make a sequencing chart for going to the toilet, as we are trying to encourage E to wipe himself, but he thought the pictures were disgusting and go quite upset, so we ditched it.All of the pictures were downloaded from a free website - http://www.visualaidsforlearning.comI have plans to make a getting ready for school/getting ready to start the day sequence chart as well, but did not want to overload him at the beginning. We have almost given up on the reward chart as, as always, he completely lost interest after a few days. I will give it one last big shot tomorrow, though. Perhaps if we re not spoiling him so much then a sticker will become more significant for him. We are trying to develop a focus for the chart as well as I think that will help. At the moment, he gets stickers for random things like using nice manners, helping around the house, or being kind to his sister, but I'm not sure what to focus on exactly. NB we changed the "I do it myself" picture to a "listen" picture. I'm not really sure why I out. The do it myself one on there in the first place! Nb again - it won't work from the iPad, so will edit this later with my little pictures.

Spoke Too Soon! (& Feeling Less Guilty)

So a few hours after my last post, E woke up at 2am and launched himself into full blown meltdown that woke our friends and M. It lasted over an hour, until he was eventually so exhausted that he fell asleep. However, aside from a little tiredness, we all had a happy day on Sunday, so I shall continue to claim the weekend as a success.

Today we had an appointment with E's psychologist, except he asked us that we try and leave the kids with someone for this session. My sister, bless her, had my two, but husband couldn't get out of work, so I went by myself. We talked mostly about Attachment Theory (he even had a little slideshow presentation on his laptop), and he went through the various Attachment Styles: Secure (50-60% of people), Insecure Ambivalent-Avoidant, Insecure Ambivalent-Anxious, and Insecure Disorganised (about 5%). He didn't go much in to the Disorganised Attachment Style he said it is quite rare and generally seen in children who are very badly abused or neglected.
He asked which style I thought related to E, and we agreed that what I concurred last week was true: E has an Insecure Ambivalent-Anxious Attachment style. But, here's where I went wrong. He explained that Attachment is all about needs, and whether or not they are met. In a child with special needs, like E, I could be a near-perfect parent and still be facing the same issues. He reminded me that only 50-60% of children have a Secure Attachment style anyway, and that first time parents respond appropriately to challenging behaviours only 12% of the time!!! He is a developmental and educational psychologist, and is a Triple P Parenting provider (can't link on the blogger app, but google away!) so I trust that he is not just pulling these stats out of his bottom.
He was also saying that it's not bad parenting, it's not just kids who have alcoholics for parents, or who work 80 hour weeks. He said in my case, my post-natal depression was probably a contributing factor, which makes me feel bad, but I still feel like I manage my depression well so we do as well as we can. It is not my fault I have/had depression.

Anyhow, he was saying that the 'trouble' with autism is that it limits a person's ability or interest in forming attachments. So we were working against one another from the start. He also said that these Attachment Styles are "slow-moving traits." A trait is something that is generally ingrained and can't really be changed. He used the example of a person who is introverted. They can go off and do a course to learn how to speak in public, but they will never be the kind of person who dances on a table top in a pub. So, Attachment Styles are somewhat ingrained, but can still be changed. He said not to expect immediate changes, and that any change will be gradual and the result of some hard work by all of us. But at least there is some evidence to suggest it can be done. I think to the future and how this will influence him as a teen, a young adult, in relationships and so on if we don't intervene now, and it's quite motivating.

He gave me some truly useful and practical advice. He said that although E has not responded well to sticker charts in the past, it is worth trying them again. I suggested that Husband and I know him best so between us, we could make a huge effort to find some way to make a reward chart work. He gave me a few different ideas, like instead of a sticker, using a puzzle piece and having to make the whole puzzle before he receives his reward. He said it will be useful for us as a means of encouraging us to notice all of the good stuff he does, and all of the positive behaviour. He said we need to let him know explicitly all the things we do for him and provide for him, so he begins to understand that we ARE meeting his needs and that we appreciate him. He said it may seem silly to parents with typical children, but even stuff like "here is your cereal that I got for you, E. I am so glad that I could give you such a yummy breakfast today. I hope you like the cereal I got for you."
We have only just realized that E has a problem with his working memory. His long-term memory is remarkable, and his short term memory is OK, but I think the working memory issues explain a lot. We have been playing at parrot talking, where I say something and he repeats it. This was one part of an assessment we did with the speech pathologist, and in mentioning it to the OT, we have decided what the problem is. He can process a simple sentence, like "the cat sat on the mat" and can repeat that back to me, but once it gets more complicated, like "the cat sat on the mat and scratched himself," he can't repeat that or even rephrase it. This obviously has an impact on how he responds to requests, and might explain why it often seems like he is deaf!
The main thing though is that we must make our lives and his environment as reliable, consistent and organised as possible. This is something we seem to always be working on as Husband and I are not naturally tidy or organised, and both tend to live in the moment. But if we work together and start small, we can do this. For E.

Anyway, that is all I have time to write. Husbandface just got home and I need to run through it all with him before it falls out of my head.

Oh and he also suggested visuals for processes and for our days etc. We have tried this unsuccessfully before, but will try again. I printed off some free images from the net. I will take some photos when I've made the charts.

Continuing To Be Surprised

We are staying in a holiday house this weekend with three friends of ours. They don't have any kids, but they are very lovely and enthusiastic about mine, bless.
E has been amazing. He had been alternating between being totally excited about coming to bawling his eyes out with dread. He desperately did not want to sleep away from home, and was adamant that he would not. Well, he has. Twice. And has been a total dream in between.

We went to the beach which he was also dreading. He loves shallow water, but is very scared of drowning. After some trepidation, my friends managed to coax him over to where the water was racing up the beach, and he loved it. He had a wonderful time and I am so proud of him for facing his fear.

He seems so determined this weekend to be just one of the adults. He keeps telling me I am embarrassing him! He needed to poop, which is very often a hassle when we are away from home. He went through a period of almost a year where he would just hold it in for days and days because he just seemed to hate going to the toilet. We now have him OK with going at home, but somewhere else is much trickier. But anyway. What does he do? He walks to the loo silently, closes the door, wipes his OWN bottom (has never happened EVER), washes hands, returns to table. Insane. Husband face and I were staring at each other in disbelief!

I think so much if his anxiety comes from fear. He is so afraid of hurting himself, or dying (he talks about this fear a lot), and is so self-conscious in his actions and movements. I really hope the psych can help, because this has been an amazing glimpse into what life could be like for him. I'm not sure what it is about this weekend; perhaps I am just really relaxed and he is picking up on that, but he is so much more confident and relaxed than usual. He still didn't want me to go and get takeaway without him, and he has still made little piles of treasures that he is very anxious about anybody moving or touching, but they are minor things. It is so lovely to see him be able to be himself and have a good time. It has been a wonderful surprise.