Wednesday, December 12, 2012

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.

Sunday, December 9, 2012

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.

Sunday, December 2, 2012

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.

Saturday, December 1, 2012

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.

Monday, November 26, 2012

New People - The Speechie, & Ambivalent Attachment

Well, I am glad the speech assessment is over. It was supposed to take 45 minutes and ended up taking an hour and 45 minutes. E started sobbing the minute I said we were going to meet the speech pathologist, and didn't give me much chance to explain or try and reassure him, so I opted for a bribe quite early on in the day. I said I would take him to get a new miniature skateboard or bike (those little rip-off things that fit in your hand that he is currently obsessed with) before we went to the appointment. So, he calmed down and we went to the shop. He picked his little toy and we drove from there to the Speech Pathologist's. At first, he was O.K. I was actually quite relieved because he just sat on the bench waiting patiently for her, wheeling his new mini bike up and down his leg. He sat next to me, trying to bury himself in to my back/side/shirt as we went through some paperwork, but would not sit opposite her at the desk to do the assessments. He wouldn't speak at all, but fortunately, the first task just required him to point at some pictures. He was sitting half on me, half on the ground, t-shirt pulled up over his head with one eye looking out while sucking his collar. He went from getting every question correct to stuffing them all up, so the therapist and I tried to get him out of his t-shirt, off me and on to a chair.

Cue meltdown.

The therapist said to him "I don't think you even CAN talk" and E started shaking. His face went bright red and he SCREAMED at her "I CAN talk ACTUALLY!" and cried, and cried, and cried, and hid under the tiny chair, pulled at my clothes, ripped my hair etc. Awesome. In the end, the therapist ended up hiding in her office and spying on us while I did the assessment. Fortunately, it was all pretty straight forward for me, but jeepers. Exhausting.

Anyway, the good news is that we were right, and he doesn't seem to have any significant problems with his speech. We ran so far over time that she couldn't do one particular assessment, so we have to go back next week I think. Ahhh! Anyway, she said he just struggled a bit with pronouns e.g. His/hers, but I have never noticed a problem with that in real life. Otherwise, he struggled a bit with repeating sentences I said to him. I think he is just not a very good listener, especially in that situation! Anyhow, she said probably another 2 sessions and we will be done. Hooray!

Moving on to

Ambivalent Attachment

So, Attachment Theory (according to Wikipedia) describes the dynamics of long-term relationships between humans. Its most important tenet is that an infant needs to develop a relationship with at least one primary caregiver for social and emotional development to occur normally. Attachment theory explains how much the parents relationship with the child influences development. So this is all relevant for a 0-2 year old which is when these attachment behaviors are being established. Childhood, adolescence and adulthood all follow on from that so can obviously be effected.

Secure Attachment is what you want for your kids. It means they will cry when you leave, and be comforted by your return. You are their rock, and you are stable and consistent enough that they trust and rely on you to be the one who looks after them.

Ambivalent Attachment is different. Also known as Anxious Attachment, it describes a much smaller number of children who respond with a great deal of distress when the primary caregiver leaves, but are both comforted and aggravated by her return. It is the 'push/pull' kid, who pushes the caregiver away then panic and pulls them back again.

Oh Lordy is this our boy. It comes from inconsistent, incoherent or ambivalent responses from parents to a child's needs. Jeepers I am bawling just writing this. It doesn't necessarily come from negligent parents, or terrible parents. It can happen in children who are put in to day care at a young age, children with parents who are physically or mentally ill.
We don't know how this has happened to E. Not entirely. Research suggests it is something that can be passed down from generation to generation, and it was both mine and husband face's experiences as a child. I am trying not to get too cut up about it. I love E and always have, but we were very young when we had him, and I was so very, very depressed. I always said I was a terrible mother and maybe I am. Or maybe he is just a particularly sensitive kind of kid. Maybe it is our histories. Fuck, I don't know. I want to fix it. That's what I do know. I want to break the cycle. By some miracle, M has a secure attachment, so at least we have only managed to f*** one kid up.
I don't know how to fix it, but I hope we have figured this out in time to help him.

I can't speak for husband face's childhood, and out of respect for my parents, I won't talk about them either, but the impact of their histories are starting to become clear. It is obvious that our experiences in childhood help form the scaffolding of our own parenting styles, and I think there comes a point where you have to rip out all the rusty, wobbly bits for fear of collapse. Ya dig?

This is very hard to post about, very hard for me to even understand. I am
hoping our psychologist can really help us with this. All he did was ask us if we'd read much on Attachment Theory and I have read all the rest of this on my own, and all of these little bombs were exploding in my head as I read. I am not a professional, so maybe I am on the wrong track, but I'm not usually. We will see. Lots of work to do. I feel fuxking terrible.

That Familiar Feeling...

of DREAD! Ugh!

I managed to book E in for a speech assessment tomorrow morning. He doesn't know yet that we are going. I don't want to risk him losing sleep worrying about it. The speech pathologist seems very nice. She had a son with autism herself, and has a special interest in helping families who have children 'on the spectrum.' We discussed whether or not we though he even needed therapy (remembering that husband and I never even considered it for E until our occupational therapist suggested it), and her opinion based on what I told her is that he would probably benefit more from time spent at preschool or with other kids than he would from therapy. But we (she and I) decided to go ahead and assess him anyway, and see if any concerns are raised.
She needs him to be calm (unlikely), cooperative (highly unlikely) and preferably, alone (impossible.) She had also requested we leave M at home. Any time we go somewhere without her, he knows it will be intense, but I understand it from the therapist's point of view.

M is actually getting considerably harder to take to E's appointments. She is approaching 2 years old, and is really living up to the role of the tantruming toddler! She has developed a particular dislike of wearing nappies, but is not ready for toilet training, so every nappy change is like wrestling a tiny crocodile. If you can get the nappy on her, she generally manages to figure how to take it off, quite often in public, and rolls about on the ground squealing "I a sushi roll! I a sushi roll!"
I imagine it will get trickier before it gets easier.

Anyway, wish me luck. Next blog post I will talk about something called Ambivalent Attachment. I bet you can hardly wait ;)

Thursday, November 22, 2012

New People - The Psych

Yesterday afternoon, I called a psychologist who sounded (from some online blurbs) like a good choice for us. He is a clinical psychologist, as well as a developmental and behavioral psychologist. They had a free appointment at 10 this morning so we met him today before our occupational therapy session. He is very good, and E seemed quite comfortable there. I think he may have even said a few words, which is remarkable. He seems very clued in to what we might need, and I am looking forward to us working with him. He is also extremely good looking *blush.* Not a necessary attribute, but it does well to increase my enthusiasm.

I know we haven't been doing nothing, but it has felt a bit like we have been stuck on pause for a while now, and this week, someone has hit the play button.

Have a happy weekend x