My amazing daughter

My Chloe is amazing. Yesterday she got up early and got ready to go off to 'adoption shop' for SA dog rescue to be a helper for the day. She's done this a few times as my parents are volunteers. She spends the day helping organise the pens for the dogs, patting them and making sure they're happy and getting them anything they need. She also helped my dad do the coffee run. Dogs are Chloe's "thing". Her Aspie obsession. Her walls are covered in dog posters, her shelves are filled with dog books and DVD's, there are sketches of dogs coming out of everywhere and she knows all there is for a ten year old to know. She has been talking about opening a dog boarding kennel when she's grown for as long as I can remember. Recently I suggested she be a veterinary nurse so she could take care of them and she thought this was brilliant. She has such a caring nature and when it's something she wants to do, isn't afraid to get her hands dirty or put in a bit of hard work. Last night after her big day, she went off to a sleepover. At 5am I got a phone call from her asking me to pick her up because she had an earache. She's never come home from a sleepover in her life so it must have been bad. I think it was just all too much for her. I put her in bed with Noah (20 months) and I. This morning when Noah woke, he was delighted to find her there and cuddled up to her with his arm firmly around her neck. It was very sweet. Chloe woke up and said that she felt much better but has gone back to sleep where I think she will stay for some time. It's so lovely to see my children act in such a caring way towards each other and outsiders as well. I'm very proud of them.

Cuteness

I've just been laying next to Noah (20 months), listening to him chuckling in his sleep. It's such a great age. He keeps randomly picking up clothes (like my jeans) and towels and putting them around his head or neck. Sebastian is 3 this month. He is at a point where he is old enough for his speech to be clear but little enough that what he has to say is amazing and cute. A few weeks ago he stole a whole loaf of bread, piled it up in front of him and wouldn't let me touch it. Last week he sat next to me and while staring at his hands said "my little hands are cold. They're little...they're mine". Last night in the car he started to cry and said that he'd lost his eyebrow. It's sad to think that one day they'll all be big and there will be no more cuteness.

To sleep perchance to dream...unless you're stressed.

I was at the Dr a few days ago and he asked me a random question. "do you dream?" he asked. If he hadn't asked me it never would have occurred to me that I had stopped dreaming. I hadn't given it any thought. Once he asked me it hit me... My dreams had gone away, probably for the last 3 months. "where have my dreams gone?!" I asked him slightly disturbed. He said that I'm probably so exhausted from the daily pressure that my brain was spending all it's time in a deeper sleep to cope. A place where you can dream but are unlikely to remember. Fascinating.
In other news, for the first time yesterday I took fluoxetine. I found the day so much easier to manage. Today I'm feeling quite positive. Hopefully this feeling can continue. I admit I like it.

Frustration

What if the children that I am trying sooo hard to help turn out like their aspie father anyway? What if the 'early intervention' counts for nothing in terms of general disposition, meltdowns and selfishness. Is it possible to teach children to not think of their own needs first? I haven't noticed that amongst the intervention strategies. What if we are so busy trying to get our kids to make eye contact and pay attention at school when really, if at all possible, we should be teaching them that your first thought in every situation shouldn't be 'what do I get out if this?'or 'can I be bothered with this issue'. Take aspie husband- despite constant forgetfulness, untidiness, aggression, constant critisism of myself and children, foul language and even the occasional man handling he has decided that I am not allowed to tell him I'm cross or show in anyway that I'm bothered by any of his behaviour. He has been saying 'You just go on and on' or 'Anna, I've tuned you out'. It doesn't matter how blatantly guilty he is, he doesn't want to know about it. Why? Because I have gotten angry or bothered too many times in the past and I've used up my quota. I kind of feel like he has more than used up his own quota of critisising and correcting. I also think that he fails to see that he continues to do the same things wrong and a lot of these things are really unacceptable behaviours. He's going to keep doing them but I'm just now not allowed to mention it. He's going to continue to critisise all of us but I am going to pretend he's perfect. "get out of jail free card" or what?! He gets to behave as bad as he likes, I'm not allowed to speak and apparently I brought it on myself for doing crazy stuff like HAVING EMOTIONS that didn't suit him. He can't see that the reason our disputes go on is because he keeps the conversation going around in a loop.
I despair for the kids because he says he is trying so hard but I see no sign of that. Is this what they are going to say to their loved ones? He yells, he swears, he's rude and he's extremely critical and he dictates but can only say "I have no control" and then continue telling me what I do wrong. He seems to like to give off the impression on Facebook that he really tries hard and wants to be supportive but shutting down communication so you don't have to take responsibility for your actions isn't supportive. It makes me feel frustrated, angry, desperate and miserable. It's just me copping all of the crap but having no ability to vent.. Hence the angry post. The rage has to go somewhere. Grr

Yet more negativity

Well what a day.. First I got an almost $1000 quote to have veterinary work done for our dog and it's not optional as he is pretty uncomfortable with an injury. Next I finally went to the GP about my obvious decline in mental health over the last few months. He suggested I start taking prozac and has referred me to a psychologist who specialises in Aspergers (which i don't have). The psych is actually the woman that my husband and children see and therefore she knows my situation. I'm not sure how to feel about this. It was suggested that I think of it as something I am doing for me (for a change) but I'm finding it hard not to feel resentful because it's my situation that has brought me here. I feel driven to it by those who are supposed to care about me. I haven't made a firm decision about what I will do yet but I guess I have to help myself in order to be the best parent I can be.

Taylen (6 with Aspergers and ADHD) had an assessment this afternoon with the OT. It was so hard to watch. He is an incredibly intelligent child and yet getting him to do even the smallest amount of tabletop work is like pulling teeth. It took us 10 minutes to get him to write the alphabet. He fidgeted, he made noises, he asked irrelevant questions but he didn't seem to be able to put pen to paper. I came away feeling completely drained and I think the appointment had the same effect on his teacher's aide. We just kind of stood there trying to console each other. The whole thing made me feel even more forced into trialling Ritalin as the Paed suggested. I feel like my aversion to medication is denying him an education. I feel guilty for considering it but even more guilty for rejecting it.

I also had an appointment with Autism SA to organise Noah's funding for his PDD-NOS diagnosis. While he is eligible for the money, he is not able to be registered for any services and will not be given help at school when he is older unless I can get his diagnosis "upgraded" to Aspergers when he gets a little older (he's 19 months now). It just doesn't seem right.

When I took Taylen to Joeys (scouts) tonight, I just found myself sitting on the sidelines staring at the floor. Usually I get involved as a parent helper. Tonight every parent in the room was standing with their child...except me. I just wanted to curl up in the corner and have a meltdown. I'm sure it was noticed but I just felt like I had nothing left to give to him or anyone else for today.

This special needs thing is a tough gig. Surely it's going to get easier as they get bigger. Here's hoping :)

Cuddly, cute toddlers

I've been loving hanging out with my 2 little people lately. Sebastian climbed up on my bed the other night, cuddled up and said "I love you". I think it's the first time he's been so affectionate. He's nearly 3 and usually keeps me at arms length while he is exploring the world but it turns out he likes me afterall.
Noah who is nearly 19 months has taken to wearing a bin on his head. It's sooo cute. He runs around all excited and absolutely refuses to take it off. Im not sure what he thinks it is but im letting it go for now.
Toddlers are so much fun.

Seb's head

Well in my haste to get to Chloe's school assembly on time because I promised I wouldn't miss it, I had to run into the supermarket to grab some rice milk to keep Noah and Sebastian quiet while we were there. I put Noah in the seat at the front of the trolley and put Seb into the big part. As I pushed up onto the escalator (the flat type) the trolley jerked and Seb fell head first onto the escalator with an incredible bang. The floor was obviously made of metal and it was in this pattern IIIIIIIIII. Two of the ridges stabbed into Sebastian's head and blood started pouring out. I was covered in blood and so was he. I felt like a horrible mother. He was breathing in short little gasps. I took him to the dr. He calmed down and they glued his head. I then raced to the school and amazingly hadn't missed Chloe's performance so at least one thing went right.
He seemed fine for the rest of the night but the following day he started vomiting, refusing food and being lethargic and sooky- all signs of concussion. So off to the hospital we go. They did a cat scan which Seb was fascinated by-"I'm going backwards" (as the bed automatically slid backwards into the machine). He insisted I take a photo. They said he had no bleeds and that he had a beautiful brain :)
The night however was not over because the dr picked up that Sebastian has a heart murmur. She obviously didn't like the sound of it because she made him have a chest x-ray, an ECG and has referred him on to a cardiologist. That appointment is still pending.
I've been trying to clean Seb's head a bit but he won't let me near it and I'm not pushing him. I know as parents we all have these things happen- babies roll off beds, toddlers touch fire places and kids fall of their scooters but when it's your kid it's hard not feel guilty and replay the event over and over. I could have taken an extra 30 seconds and gotten the pram out of the boot or I could have insisted he sat down in the trolley. Lesson learned I guess. I think I've apologised to him enough times. He was saying "I'm so sorry" to the floor when he bumped it which is exactly what I was continuously saying to him. Very cute. Kids are great fun.

Seb in the cat scan machine

Coping

I have come to accept that I only get enough motivation to blog these days when I'm feeling truly miserable. I'm not going to fight it. I'm going to look at it as an opportunity to look back on all my negative feelings and feel better about my present in the future because surely life has got to get better than this.
I've had a couple of periods of my life that felt really difficult to deal with. The first was when my husband was leaving for uni by 7am and then going straight to work and arriving home at about 9pm. At the time Noah was a little baby, Sebastian was 1 and very stuck in his development, Taylen was 4 and a very angry little boy and Chloe was 8 and probably at the peak of her bad behaviour. I felt exhausted and like I was carrying far more than my share. The other time is now. 4 kids and a husband on the spectrum mixed with ADHD. I probably shouldn't say this but I feel like I live in a mental institution and I'm the only nurse.
Anyway, when I feel like this I have noticed that I do something a little bit interesting. I remember in Sam's university days whenever I got a chance I would go for a 15 minute walk. It was only about once a week but my memory of doing this is so strong because it was like finding water in the desert..it was just so desperately needed. As I walked I would stare intensely at everything. I wanted to see every detail of every flower, every leaf, even the dirt and gravel. It was like sucking in as much visual input as possible to keep me going until I could escape my prison again. I just wanted to burn what I was seeing into my brain. My overwhelming feeling was and is again now "what about me?" and "how did I get here?". When walking I try to suppress this. I didn't want to think about it even if just for a little while. I try not to dwell on it anyway because my family needs so be okay and that's my first priority but still at least my husband should be giving me something in return for my sacrifices, shouldn't he? I don't know and it's not really my point right now. I just find it amazing how fixated my mind becomes on seeing every vein in every leaf, the vibrancy of the petals and even seeking out the most vibrant of flowers as though they were worth more in my sensory pursuit. Even the bitumen becomes fascinating because it's something for my eyes to process that is not the four walls of my house. It was almost like petrol. I needed to keep taking these visual seeking walks to be able to keep functioning at home. I noticed I would do the same with music. The lyrics meant more and the sound was more beautiful.
The mind is incredible but I wonder if this particular coping method is a little bizarre or if others can relate.

How to train an aspie

I can see how that title might be a little offensive but hear me out. My kids watched how to train a dragon the other day- wonderful movie. It kind of reminds me of the Aspies in my house. They all thunder around yelling. They get angry quickly and they are so defensive which makes them rude- "I'll get you before you can get me". When I say "do this" in a stern, grumpy voice or "why did you do that?" in an annoyed tone, they immediately shut down and become difficult and defiant, this includes the aspie husband. When I say "hey, can we get this done really fast so we can do..." in a motivational style or happy voice..I actually get results. The same with starting my sentences with "I'm not angry but...". I realise more and more how much better it is to be calm and supportive towards them, to work with them. So easy to say. I'm pretty good at not yelling at the kids. I can diffuse a meltdown in half a moment as long as it hasn't gotten too far. Trying to do the same with Aspie Hubby, not so easy. I think it's because I'm not relying on the kids for anything. I need him to be the other adult and I often feel like he's not. I expect the kids to fight and set each other off- even NT kids do that. I can't tolerate their father causing them distress and winding them up because he can't calm himself down over trivial things. He knows that he has certain requirements and deficits due to his aspergers but won't accept the kids do too. He can't clean the kitchen in one go without getting distracted but master 6 (aspie/ADHD) should be able to clean his whole room in 10 mins without getting distracted, overwhelmed or angry. The hypocrisy drives me crazy. It's so much easier to forgive your child for yelling at you or upsetting the family. What will happen though when they are adults? If my boys marry, I hope they find a partner who is kind and forgiving and tolerant. If I want that for my boys, shouldn't I do that for my own husband? Shouldn't I be the kind of wife that I want for my sons? But how do you cuddle up to someone who has critisised you all day? How do you be best friends with someone who yells at you all the time? How do you forgive... Everyday for the same things? I guess it's just a matter of taking one day at a time. Sometimes I get it right and other days I feel bitter and it shows. Maybe though, if I'm willing to try to forgive him everyday, he could do the same for me.

On the hunt for services..

Another crazy day! I discovered that Sebastian can do physio at the hydrotherapy pool. I have put him on the waiting list. I have also put the 3 big kids on the waiting list for 'riding for the disabled'. I think they would get a lot out of it with all their sensory issues. They are all really good with animals and they do qualify to go (I asked quite specifically today if Aspergers was enough). I think they'll love it.
Today I got out a big blank canvas and got the kids (and the dog) to cover it with their handprints. It looks amazing. They decided to write on it "little hands, big dreams". Very cute.
On another happy note, I have managed to convince my father in law to come to kinder gym each week so that both of my little people have an adult to look after them. I think there is a lot to gain from kinder gym if you are on the spectrum. Lots of gross motor activities, one on one time with your mum (and/or grandpa in our case). Also they generally have some structured floor time which I think will be good for them as well as far as learning to sit in a circle, listen to the instructor etc.
I've been considering a Montessori childcare program for Sebastian. He's such a bright kid and I wonder if we should be getting him into a learning program now but I just can't make myself do it. I'm so worried about him feeling abandoned because he won't understand why I'm leaving. He hates being left. I hope that if I put him in kinder gym, take him to playgroup and put him in the crèche once a week at my time and of course spend lots of time with him at home- maybe I can give him everything he needs. He also does OT once a week with Autism SA which he loves. It's good because he has to take instructions from someone who isn't me (which he's not good at) and he's getting one on one attention. This is that "doing it all" thing I worry about. I Just hope I'm getting this right.

Doing it all.

How can I possibly do everything I need to for all 4 kids all the time? Gluten, dairy and additive free for all 4. Gross motor skills and muscle strengthening activities for Seb, fine motor activities for Taylen. Literacy practice for Chloe and on the hunt for a good Maths skills program. I'm trying to teach Noah not to be so dependent on me as he's so anxious. Not to mention the typical school homework, scout badges and general maintenance of 4 children. Throw in the many appointments and it feels like a never ending merry go round. There aren't enough hours in the day and I can't spread myself this thin amongst the kids. I need to split myself in 2.

The worst of it is the guilt. Judgement comes in at a close second. The raised eyebrow when I say "no I still haven't started taking Seb to physio", the look when I explain that I don't have time to help Chloe with her assignment or when Tay's reading log only has 2 entries for the week. I just can't seem to pull everything together at once. If they could just stop for a minute. If Noah could not wrap himself around my legs and Seb could not fight me on every decision I make and the meltdowns could stop and if they could just for a little while manage their own homework and take themselves to their appointments. If I could just get a break for a minute, I'm sure I could get back on top of it. These people don't need to raise their eyebrows at me because I already know what I haven't done and what the impacts are. Don't they know I'm doing the best I can?! Everybody wants to judge but nobody wants to help. It can't just be me. Surely there are more mothers than me shaking there heads wondering how their life turned out like this.

Tired

I'm really tired. It's a never ending circle of therapy and being yelled at by the all the people who are supposed to care about you. I get that their lives are complicated by a differently wired brain. I understand that they feel angry all the time but why do i always have to be the punching bag?

This is just a vent. I'll get over it tomorrow when I watch Tay try really hard at T-ball and at Chloe's 10th birthday party. I'm so proud of the person she is becoming.

People have way bigger problems than me but... this is hard too.

Layers

I took Taylen to the psychologist today and she said "I don't know how you do it". I just said "I'm ok" and kept talking about Tay. It did get me thinking on the way home though about how people must see me. I think there a lot of smaller issues that make my situation look tough. For instance-

Layer 1- I have 4 children
Layer 2- included in those children are a 1 year old and a 2 year old.
Layer 3- I suspect my youngest is heading for an Aspergers diagnosis. I spend a lot of time worrying about him. Noah is extremely clingy, he has a lot of anxiety and I can't put him down for 2 minutes without him screaming and shouting "up". He is also quite rough and bites and gouges when he's cross.
Layer 4- My 3 eldest children all have Aspegers syndrome and eldest son has ADHD as well.
Layer 5- My Husband has Aspergers and ADHD- taking away some of the necessary support I need from the second parent and additionally adding his own set of problems to the mix.

That looks pretty bad but there are people in the world with real problems. There are many people in the world that I wouldn't trade places with. Parents who have a child with cancer, said child battling cancer, wives being beaten daily, parent mourning loss of child- no trade.
I am tired and I do sometimes wonder what people do who don't have all these layers. They might actually have a life. Actually even if they do- no trade. I wouldn't swap my kids for anything. I've learnt a lot from my kids. I have so much more patience these days. I appreciate people's differences and I'm less judgmental. I think I'm doing alright. But if anyone wants to fly me to Paris for a week- I'M IN!!

A word on Sebastian

Sebastian was always an interesting child. From about 6 months I would say to people "he's a funny baby" but they always dismissed my concerns. It took him a long time to start talking. He could say 6 words and then he progressed no further. He had repetitive movements. He would spin and intentionally bang his head and the most obvious sign that things weren't right was his play. He would empty the pieces of a toy out of its container onto the floor and then immediately put them all back in. He would then tip them out again. He did this over and over and over. He also stacked anything he could. He would stack the same 3 clear plastic cups repetitively for an hour or more. Taylen had just been diagnosed with Aspergers so I knew where this was going but the frightening difference was that Seb wasn't gaining words. We weren't looking at Aspergers, we were dealing with Autism. He was diagnosed very quickly and we began intervention immediately. I don't know if it was the hours of therapy, the supplements, the dietary changes or just absolute pure luck but he suddenly progressed RAPIDLY. Sebastian is 2 and a half and no longer qualifies for an Autism diagnosis due to his incredibly ADVANCED speech. It started with a lot of echoing but it quickly became spontaneous language (he does still echo occasionally though). The speech therapist is sure he will still qualify for Aspergers which seems like an almighty gift compared to where we all thought he was heading.
We have discovered that he is incredibly smart. During ABA we repeatedly heard the words "we've never had a 2 year old do this before". He learnt his colours and shapes in the blink of an eye including trickier shapes like pentagon and crescent. He could build towers with blocks from memory, even taking over the therapists role and building a tower and then pointing at it saying "build this". He has learnt to play a lot more functionally- though I often see that he is working from a script in his mind. The train will always crash in the same place. The cow will always get on the track and the trains are never to detach from each other. Still, it's a lot better than the cup stacking.
Sebastian is still very bossy. he has to control his environment all the time. His cup must be a certain colour and he has to choose the animal on his t-shirt. Those are just 2 of the many, many decisions he MUST make for himself every day. I suspect that one day he will be very good at his job as he is such an independent, intelligent perfectionist. Whether he will gain the social skills to have any friends or a partner is yet to be seen. He has a certain charm. He's disgustingly cute and makes friends everywhere he goes. He seems to have a lot of charisma. People are more willing to forgive you for being bossy at 2 though.
This year we will be working on his social skills. He is going to the playgroup where he will eventually attend kindy. He is about to join a kinder gym also and I'm occasionally putting him in the crèche at 'My time'. Of course,we are doing things at home as well. We are trying to get him to share with his siblings, take turns and lose sometimes. I'm about to start trying to play some simple board games with him, so we'll see how that goes.
He is just beautiful. He's a quirky little boy and I think he has a hard road ahead. I kind of feel like I'm his employee... but it's a pleasure working for him.

Time out..the good kind

I think that everyone needs to take some time out. Today I went to 'Quirky Kids', a parent group for people with children with Aspergers/Autism/Sensory processing issues. When ever I hang out with these mums I always come away feeling fantastic. Special needs mums can be incredible. They leave me feeling empowered, hopeful and understood. Parents have been my best source of information since my first child was diagnosed with Aspergers. Back then I did an 'Early Days' workshop for parents just discovering the world of Autism. There I met my wonderful friend Debbie. We immediately became friends and I felt like she had all the answers and she was the first person to truly understand what I was dealing with. Debbie continues to have all the answers. She also continues to be my biggest source of support in my Autism journey. So, i think everyone needs to take some time out but I also think that everyone needs a Debbie.

 Today when Debbie was leaving she said that Chloe makes her feel quite hopeful when thinking of her own aspie daughter's future. Chloe is a couple of weeks shy of ten and she certainly has come a long way. She was only just diagnosed a few months ago. Before that she had to not only deal with the frustrations of her Aspergers but she also had to deal with the frustrations of being told off when she wasn't functioning well because we just saw her behaviour as defiance and laziness when in fact it was despair, anxiety and confusion. I feel bad that she has had to deal with such a heavy load with no support but since her diagnosis everything just fell into place. I now understand her behaviours and what's driving them. Now I can work WITH her. For years before she was diagnosed I would speak to her teachers about why she may have been struggling. They never had the answers. I took her to psychologists and doctors and they couldn't work it out. I think one day, after the 2 boys were diagnosed, I was pondering the issue for about the millionth time and it hit me like a tonne of bricks. She did act differently to the boys but ultimately it was the same deficits holding her back. She just handled it differently. It was no surprise when I did a little bit of research and discovered that Aspie girls and Aspie boys have significant differences. For a start, Chloe does have some empathy. Also she is less self focused than her brothers. She will try quite hard to make others happy. Chloe's number one trouble is the anxiety. She doesn't like a lot of attention and will try to fit in at all costs. Still, we have come a long way from the screaming meltdowns. I'm sure the neighbours thought that we were beating her rather than hovering next to her trying to calm her down. She has a lot of challenges to overcome and obviously she will never lose her Aspergers traits but she is back on track and I no longer panic about where she'll end up in her adult years... well anymore than any other parent. She's a lovely kid with a lot of potential and by far the easiest to deal with in our world of Aspergers.

A typical day...

Another day of chaos...


Chloe (almost 10) was home sick from school AND..


Taylen's (almost 6) school shorts went missing and he had to go to school out of uniform. Of course walking in late in the wrong clothes was just too much for him and the teacher practically had to pry him off my leg so i could leave AND..


Sebastian (2.5) had a really "autistic" day. He was SUPER controlling, micro-managing every little aspect of his day down to what plate and spoon he used to what t-shirt he wore. After the 50th or so melt down for the morning he decided that he could no longer function unless every single light was turned on despite it being a perfectly bright and sunny day. Every time i turned even one light off he would drop to his knees and scream as though his world was crashing down around him. I just gave up in the end.


Noah (16 months) was his usual clingy self. "Up" is his favourite word and he constantly cuts me off when i'm walking, wraps his arms around my legs and refuses to budge until he's perched on my hip. He has this new funny trick where he scrunches the bottom of my top up and blows raspberries on my stomach. I try to stop him but he is so determined and is so proud of himself when he gets in a good one. Of course it doesn't help that his 3 siblings laugh and cheer him on.


Oh well, I now have 4 sleeping little people and I'm looking back on my day with a smile. I find that I often feel amused when I think about my children's antics that people would consider frustrating or difficult but they really are funny little creatures- my Aspie babies.

The beginning

I have explored Facebook and Twitter extensively and while they are both dear friends, you can only talk about yourself on these mediums so much before you are annoying... hence the beginning of the blog.