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!!
Tuesday 28 February 2012
Saturday 25 February 2012
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.
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.
Friday 24 February 2012
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.
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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.
Wednesday 22 February 2012
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.
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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.
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