So I've been harbouring a little secret.....
When Freya was diagnosed we were sent off with a bunch of leaflets about autism, I'd only ever met one child with autism and I'd only seen him a few times briefly and just remember thinking he looked perfectly normal, his mum never said much other than he was obsessed with slamming doors. So I was pretty ignorant to what it was.
As I sat at home reading them I remember thinking that not much of what they were mentioning seemed odd to me, I also began to notice that a lot of the signs and symptoms were things people had moaned at me for doing over the years. I mulled over this in my head but tried to dismiss it.
Clearly I'd forgotten how my mind works and not obsessing over things that worry me is something I don't have control over and so I began thinking about it more and more.
Little things popped into my head from my childhood, how early on I could remember my own ocd crippling my actions, my dad holding my face so I had to look at him when he was talking to me, it still makes me squirm internally, it was so uncomfortable.
I thought about how I'd never had more than one or two friends during my school years and how difficult I'd found it to fit in with anyone.
I started to research further online......
As I read it was like being hit with a sledgehammer, it became less discovering how many signs I had and more trying to find one I didn't have.
Every time I would mention another marker to my partner he would just say "uhuh, fancy that" eventually he just gave me a sad look and said "I have tried to tell you"
My partner's brother and sister are both autistic, one is moderate and one severe so he grew up around autism. He recognised it in Freya long before I would accept she was a little different.
It seemed like a bad joke at the time, he's always got really frustrated with me and said I see things in a completely bizarre way, he can't explain to me, my explanations make no sense to him etc
According to him these randoms comments of "you have such a weird way of looking at things" and "my god you're so special" were meant to be telling me I had a problem?!
After ranting on facebook about it my eldest sister also informed me she had tried to tell me several times!!
I've recognised recently that I don't do subtlety but to my knowledge no one has EVER even remotely suggested to me there was something different about me.
Yes every partner I've ever had has ranted at me about the way I behave but I honestly thought it was just men being idiots and not understanding women.
Yes I've always had anxiety and lived at a high stress level but I have a lot going on in my life so that just seemed normal.
I've got to 36 believing that everyone hated me, that I'm just an annoying unsociable person, I've kept myself to myself to try to protect myself from being hurt.
I feel so angry, everything I thought about myself and my life is now in question.
My sister says autistic people don't find it helpful to have a diagnosis but I disagree, whether I'm on the spectrum or not I would have found it very useful to know that I was struggling for a reason, that it may not have been my fault that I couldn't express myself to others. I have blamed myself for everything that has gone wrong in my past and now I need to know if this is why I've always found life so hard.
Adult diagnosis however is a lot harder to come by and it took me 2 trips to my GP to get a referral. The first time I just couldn't spit out what my concerns were and the doctor ended up suggesting I have my thyroid tested! After many tears and frustrated rants I made a long list of all the things I did that concerned me and reasons why I didn't feel my thyroid was to blame and went back to the GP.
I have just received my appointment and I have to wait until October.
I keep adding to my list and I keep going over and over things in my head and October seems an awfully long way away. I feel like my own identity is hanging in the balance, like I don't know who I really am. I don't know what's real and I can't help but wonder how different my life would have been if someone had actually told me straight out that I needed help.
Friday 26 July 2013
Documenting the inappropriate behaviour
It has started to really frustrate me that nearly every time Freya is seen by a professional she acts as though butter wouldn't melt, she still displays her repetitive behaviours and ocd tendencies but she just never seems to be naughty. So I decided to try and snap a photo of her every time she is doing something inappropriate so I can show them what she's like for me!
Here she is showing how she likes to eat her sauce!
One of her key workers says I must insist she sits at the table to eat and play, this is all well and good but for nearly 3 years Freya has stood to eat and done jigsaws in the doorways, (I have no idea why she does them there), despite the fact she loves licking stuff she isn't meant to lick she would rather stick her hand in her ice cream cone and lick her hand than lick the ice cream :/ Yes I can suggest she does it the way she's meant to but then I haven't been sat watching for the last 3 years as she ran riot just not trying to do anything about it but it just hasn't got through to her. I am becoming less bothered about the things she does too, ok it's gross but she's not hurting anyone and the alternative is a very unhappy screaming child!
Here she is showing how she likes to eat her sauce!
One of her key workers says I must insist she sits at the table to eat and play, this is all well and good but for nearly 3 years Freya has stood to eat and done jigsaws in the doorways, (I have no idea why she does them there), despite the fact she loves licking stuff she isn't meant to lick she would rather stick her hand in her ice cream cone and lick her hand than lick the ice cream :/ Yes I can suggest she does it the way she's meant to but then I haven't been sat watching for the last 3 years as she ran riot just not trying to do anything about it but it just hasn't got through to her. I am becoming less bothered about the things she does too, ok it's gross but she's not hurting anyone and the alternative is a very unhappy screaming child!
Tuesday 16 July 2013
Trying some healthy eating!
When Freya was little she ate such healthy stuff but inevitably in a house with 3 teenage sisters she soon discovered crisps, chocolate and biscuits were much nicer especially as they seemed to be rationed!
She still enjoys humous and raisins (not together, though she probably wouldn't mind) and has just taken up wholemeal pitta bread as long as it's got ketchup in (everything must have dip for Freya)
However when she demands food on a half hourly basis and usually its ice cream she wants you do worry as all mums do that they're not getting enough of the good stuff.
I know the old skool thinking is that they'll grow out of these fads and it won't do them any harm but based on what I've read, autistic kids just don't grow out of them and in some ways I'm grateful her obsessions do change now and then and sometimes I can convince her a banana would be yummy instead :)
That said, since she started eating more rubbish than good stuff her skin has got really bad and you can't argue that when it's right in front of you.
Having had trouble shifting that last bit of pregnancy weight since I had Lucas, (he was 9lb 10oz, I ate quite a lot over christmas and he's still a hungry baby) I ordered myself two graze boxes a week to try and help me snack more healthily. Freya took great interest in these little boxes in a bigger box that started appearing from the postman so I was delighted when they announced they were launching kids graze boxes.
Here is a photo of Freya with her first free trial box, she was quite pleased with it as you can see!
If you know a little nosher who would enjoy these they are doing free trial boxes just for july, I have a code you can use, just leave me a note and I will email it to you. Also don't worry you will get stuck with future boxes it's easy to cancel online at any point if you don't want any more. There's no commitment :)
She still enjoys humous and raisins (not together, though she probably wouldn't mind) and has just taken up wholemeal pitta bread as long as it's got ketchup in (everything must have dip for Freya)
However when she demands food on a half hourly basis and usually its ice cream she wants you do worry as all mums do that they're not getting enough of the good stuff.
I know the old skool thinking is that they'll grow out of these fads and it won't do them any harm but based on what I've read, autistic kids just don't grow out of them and in some ways I'm grateful her obsessions do change now and then and sometimes I can convince her a banana would be yummy instead :)
That said, since she started eating more rubbish than good stuff her skin has got really bad and you can't argue that when it's right in front of you.
Having had trouble shifting that last bit of pregnancy weight since I had Lucas, (he was 9lb 10oz, I ate quite a lot over christmas and he's still a hungry baby) I ordered myself two graze boxes a week to try and help me snack more healthily. Freya took great interest in these little boxes in a bigger box that started appearing from the postman so I was delighted when they announced they were launching kids graze boxes.
Here is a photo of Freya with her first free trial box, she was quite pleased with it as you can see!
If you know a little nosher who would enjoy these they are doing free trial boxes just for july, I have a code you can use, just leave me a note and I will email it to you. Also don't worry you will get stuck with future boxes it's easy to cancel online at any point if you don't want any more. There's no commitment :)
Thursday 11 July 2013
Freya meets peppa pig
When I saw that Freya's favourite pig was coming to woburn safari park I thought it would be lovely for her to go and meet her. Also since we took her to paradise wildlife park a few months ago she has been asking to go back and see the lions and bears! Days out are always expensive when you have a big family so I just took Freya and Lucas as you don't have to pay for under 3's.
The drive there was fairly quiet and she was excited to see the tiger pictures at the entrance.
The problems began at the entrance.....
There was a long queue to get in and it was already incredibly hot. I had told Freya that we would drive round and see the animals and that we must keep the windows closed as the tigers etc were dangerous, dangerous is always tricky to explain to a child who has no sense of danger but I tried every angle, "if the tiger bites you it will be sore, ouch, it will bleed", she is obsessed with opening her window and as they're not electric you can't lock them.
As the tour round began I became aware of my first mistake, I had kept saying we are going to see tigers and while I had mentioned other animals the tigers had been the main topic as she wanted to see them again.
As we crawled past some cattle looking things and my partner and I debated what they were instead of looking at the map?! Freya began to get restless in the back.
The rhino was next and while she showed mild interest the inevitable began....
"see tigers" she began, I now know better than to let her say it more than once or she doesn't stop so I quickly said "yes we will see tigers in a minute". Lately though it seems anything that involves the words later, soon or anything else that means not right now is a HUGE problem. So the wailing began "see tigers" "see tigers".
I try to remember the advice the professionals have given me so I dig out the map to show her the order of the animals. It's hard to say if she wouldn't have had the tantrum if I'd showed her it first as sometimes I do it all "right" and it's still wrong.
By the time we got to the tigers she was screaming too much to even notice them! It took a long time to get past the wolves and bears as someone was taking about twenty minutes to look at them and holding everyone else up.
I know we are always being told that kids pick up on your mood so I was trying extremely hard to stay calm, it was incredibly hot in the car and Lucas was starting to grizzle as we were crawling along. I suddenly felt a wisp of fresh air on my neck and realised in horror that she had wound down the window.
I tried to explain again why the window had to be closed but she was just yelling "no" at the top of her voice.
So I now had to complete the rest of the route with one arm twisted behind me holding the window knob. My partner was innocently pointing out all the idiots sat by the lions with the windows right down with their arms hanging out and that just annoyed me, one because I was boiling and two because Freya could hear.
We decided by the time we got out of the first bit it was best to go and park and do the walking bit as both of the kids were well fed up.
We spent ages trying to find a disabled space with Freya repeating "get out" "get out" until I felt like my head was going to explode. I was trying to point out things out the window to distract her, showing her the swan boats and promising we'd go on one when we got out and this seemed to quiet her down temporarily.
As we pulled into a space I started to get really stressed, parking is always a nightmare as my partner is in his early forties and at a quick glance doesn't look disabled. Everywhere we go we get people staring or questioning us, "that's a disabled space" he is well used to it but it makes me so angry. I don't know how he stays so calm. I think it's worse as we have the kids as people think you're using it as a child space. They stare as I get out and get the buggy out and they stare as he lifts Lucas out and puts him in. On the whole old people are the worst, I want to yell at them yes he was born disabled you're just old! You can't see pain and he worked so hard to learn to walk again after his condition deteriorated a few years back he won't use his wheelchair unless he's crippled with pain, he's a young bloke, he's proud and stubborn and because of that he has to suffer abuse whenever we go out. If it was me I'd have a row with everyone that looked at me.
Anyway, we headed off to the swan boats when Freya saw a climbing frame, I had bought her a new bee bag with reigns so she dragged me over to look at it, it was way too big for her so I bargained her away with the as promised swan boat ride. We joined the queue, which I knew would start another trauma, only to hear the man telling another family they had to be 3 to go on them.
We left the queue and I tried my hardest to explain to Freya that she wasn't big enough, the whole time knowing she doesn't understand and it's my fault now for promising a boat ride, why hadn't I checked all this beforehand, there's always a reason why under 3's are free.
As it was nearly lunchtime we talked her into having a picnic and this appealed to her first love for food, she sat down nicely next to the buggy and we had some lunch. The trouble is when she's had enough then she thinks everyone else should be done too. My partner takes ages to do everything so we often have conflictions over this. He feels I'm rushing him and he doesn't matter and Freya just wants to run off and I've now got indigestion with the pair of them.
I took her off to see about tickets for the sealion show and as one was just about to start I thought we may as well go to that one. We rushed off and I was babbling about seeing sealions on the way. It never occurred to me that Freya had no idea what a sealion was and that sitting to watch them was going to be a problem.
I was wrong......as soon as we went in she started, everyone was already seated so I made my way to some empty seats near the front with her totally forgetting my partner has great trouble with steps and he was carrying the baby, I sat down with her, "my daughter can't see now" came from behind me, Freya was jumping up and down trying to get back up the stairs and I'm trying to take in what the man was saying, "ok, I'll swap with her" I said, meanwhile freya is now on the floor screaming and I'm trying to wrestle her up by her reins. "we always get one wherever we go don't we" came from behind us again, "yeh what is it about us" I turned round to see it was the mother talking to her other child. My partner had been trying to make his way to me and I was trying to hand Freya to him as she seems to listen to him more but I ended up just picking her up and making my way to the back. I tried so hard to be calm explaining to a screaming child that she just had to stop screaming and we could watch the sealions jumping and swimming.
Another woman now turned around and just stared at me for ages not saying anything but her look said it all. I wanted to say what the hell do you want, do I look like your opinion will help, no I can't control my child would you like a go, but instead I just got up virtually in tears with freya wriggling and screaming in my arms and left the show. It wasn't even that we had paid to see it but I love watching the sealions and now I was stuck with her on my own until my partner came out when it finished half an hour later.
I realised it was nearly time for a peppa pig appearance so whisked her off to queue to see peppa. I was sure she would want to see peppa, it was only about ten minutes till she was appearing so we made our way to our seat to wait.
As you can imagine Freya didn't want to sit, she wanted to wander up and down the benches. This in itself was not the worst thing until she noticed a gap in the fence and went out of it. sigh....
After leaving my bag in my seat and chasing her back into the fenced off area I managed to get her to sit on my knee. The man next to me now appeared with an ice cream for his daughter to eat while she waited! What a fantastic idea I thought and was tempted to offer him a large sum of money to go back and get Freya one for me :/ now not forgetting that Freya is obsessed with ice cream you can probably guess the outcome of this seemingly innocent act :( she was like a wild cat on a lead, just trying to keep hold of her made it look like I was trying to strangle her with her reins. She was kicking the people in front and throwing herself on the floor in front of the people next to us stepping on their feet. There were some children playing down the front with the pebbles so I considered maybe she could go down there so I could let go of her safely.
I forgot that Freya likes to throw things and the pebbles were soon flying through the air to more disgusted looks from the other parents, (and kids) trying to divert her from that she then ran off up the opposite steps and off through the park.
I've noticed I always seem to be wearing flip flops when she does this so am unable to run at her speed!
With her tucked under my arm again I returned her to our seat, amazed that no one had stolen my purse and phone!
Fortunately peppa then appeared which briefly distracted her, the problem now was that she wanted to go down and see peppa and they were doing it one kid at a time so they could take photos!
I tried to remind her of when the lady came to play at home and they'd taken turns, I showed her how many children there were before her and then it will be Freya's turn.
This didn't defuse the tantrum but did mean when it was her turn she actually stood and smiled for the photo, before going back into a tantrum because we had to leave for the next childs turn! :/
My partner was by now sat on the opposite steps with a very amused expression on his face!
I thought the promise of an ice cream was sure to bring her round so we headed off to the hut. Unfortunately so had everyone else on this blisteringly hot day! My partner went off to feed the baby and I was left with Freya in the queue, I'm sure everyone in the queue thought I was very cruel keeping her attached to me as she tugged and tugged at the reins screaming "let go of me!", I kept saying again it will be Freya's turn soon and tried to distract her by asking which ice cream she was going to have. Choosing can often take her an excruciating amount of time but when I wanted her to take ages she just said "strawberry" and carried on yelling!
We went on the train and the family in our carriage actually got out at the half way point to escape :/
We managed about another hour before exhausted we headed back to the car. Freya later was all smiles when we talked about seeing the animals and peppa, "see again" she said!
The drive there was fairly quiet and she was excited to see the tiger pictures at the entrance.
The problems began at the entrance.....
There was a long queue to get in and it was already incredibly hot. I had told Freya that we would drive round and see the animals and that we must keep the windows closed as the tigers etc were dangerous, dangerous is always tricky to explain to a child who has no sense of danger but I tried every angle, "if the tiger bites you it will be sore, ouch, it will bleed", she is obsessed with opening her window and as they're not electric you can't lock them.
As the tour round began I became aware of my first mistake, I had kept saying we are going to see tigers and while I had mentioned other animals the tigers had been the main topic as she wanted to see them again.
As we crawled past some cattle looking things and my partner and I debated what they were instead of looking at the map?! Freya began to get restless in the back.
The rhino was next and while she showed mild interest the inevitable began....
"see tigers" she began, I now know better than to let her say it more than once or she doesn't stop so I quickly said "yes we will see tigers in a minute". Lately though it seems anything that involves the words later, soon or anything else that means not right now is a HUGE problem. So the wailing began "see tigers" "see tigers".
I try to remember the advice the professionals have given me so I dig out the map to show her the order of the animals. It's hard to say if she wouldn't have had the tantrum if I'd showed her it first as sometimes I do it all "right" and it's still wrong.
By the time we got to the tigers she was screaming too much to even notice them! It took a long time to get past the wolves and bears as someone was taking about twenty minutes to look at them and holding everyone else up.
I know we are always being told that kids pick up on your mood so I was trying extremely hard to stay calm, it was incredibly hot in the car and Lucas was starting to grizzle as we were crawling along. I suddenly felt a wisp of fresh air on my neck and realised in horror that she had wound down the window.
I tried to explain again why the window had to be closed but she was just yelling "no" at the top of her voice.
So I now had to complete the rest of the route with one arm twisted behind me holding the window knob. My partner was innocently pointing out all the idiots sat by the lions with the windows right down with their arms hanging out and that just annoyed me, one because I was boiling and two because Freya could hear.
We decided by the time we got out of the first bit it was best to go and park and do the walking bit as both of the kids were well fed up.
We spent ages trying to find a disabled space with Freya repeating "get out" "get out" until I felt like my head was going to explode. I was trying to point out things out the window to distract her, showing her the swan boats and promising we'd go on one when we got out and this seemed to quiet her down temporarily.
As we pulled into a space I started to get really stressed, parking is always a nightmare as my partner is in his early forties and at a quick glance doesn't look disabled. Everywhere we go we get people staring or questioning us, "that's a disabled space" he is well used to it but it makes me so angry. I don't know how he stays so calm. I think it's worse as we have the kids as people think you're using it as a child space. They stare as I get out and get the buggy out and they stare as he lifts Lucas out and puts him in. On the whole old people are the worst, I want to yell at them yes he was born disabled you're just old! You can't see pain and he worked so hard to learn to walk again after his condition deteriorated a few years back he won't use his wheelchair unless he's crippled with pain, he's a young bloke, he's proud and stubborn and because of that he has to suffer abuse whenever we go out. If it was me I'd have a row with everyone that looked at me.
Anyway, we headed off to the swan boats when Freya saw a climbing frame, I had bought her a new bee bag with reigns so she dragged me over to look at it, it was way too big for her so I bargained her away with the as promised swan boat ride. We joined the queue, which I knew would start another trauma, only to hear the man telling another family they had to be 3 to go on them.
We left the queue and I tried my hardest to explain to Freya that she wasn't big enough, the whole time knowing she doesn't understand and it's my fault now for promising a boat ride, why hadn't I checked all this beforehand, there's always a reason why under 3's are free.
As it was nearly lunchtime we talked her into having a picnic and this appealed to her first love for food, she sat down nicely next to the buggy and we had some lunch. The trouble is when she's had enough then she thinks everyone else should be done too. My partner takes ages to do everything so we often have conflictions over this. He feels I'm rushing him and he doesn't matter and Freya just wants to run off and I've now got indigestion with the pair of them.
I took her off to see about tickets for the sealion show and as one was just about to start I thought we may as well go to that one. We rushed off and I was babbling about seeing sealions on the way. It never occurred to me that Freya had no idea what a sealion was and that sitting to watch them was going to be a problem.
I was wrong......as soon as we went in she started, everyone was already seated so I made my way to some empty seats near the front with her totally forgetting my partner has great trouble with steps and he was carrying the baby, I sat down with her, "my daughter can't see now" came from behind me, Freya was jumping up and down trying to get back up the stairs and I'm trying to take in what the man was saying, "ok, I'll swap with her" I said, meanwhile freya is now on the floor screaming and I'm trying to wrestle her up by her reins. "we always get one wherever we go don't we" came from behind us again, "yeh what is it about us" I turned round to see it was the mother talking to her other child. My partner had been trying to make his way to me and I was trying to hand Freya to him as she seems to listen to him more but I ended up just picking her up and making my way to the back. I tried so hard to be calm explaining to a screaming child that she just had to stop screaming and we could watch the sealions jumping and swimming.
Another woman now turned around and just stared at me for ages not saying anything but her look said it all. I wanted to say what the hell do you want, do I look like your opinion will help, no I can't control my child would you like a go, but instead I just got up virtually in tears with freya wriggling and screaming in my arms and left the show. It wasn't even that we had paid to see it but I love watching the sealions and now I was stuck with her on my own until my partner came out when it finished half an hour later.
I realised it was nearly time for a peppa pig appearance so whisked her off to queue to see peppa. I was sure she would want to see peppa, it was only about ten minutes till she was appearing so we made our way to our seat to wait.
As you can imagine Freya didn't want to sit, she wanted to wander up and down the benches. This in itself was not the worst thing until she noticed a gap in the fence and went out of it. sigh....
After leaving my bag in my seat and chasing her back into the fenced off area I managed to get her to sit on my knee. The man next to me now appeared with an ice cream for his daughter to eat while she waited! What a fantastic idea I thought and was tempted to offer him a large sum of money to go back and get Freya one for me :/ now not forgetting that Freya is obsessed with ice cream you can probably guess the outcome of this seemingly innocent act :( she was like a wild cat on a lead, just trying to keep hold of her made it look like I was trying to strangle her with her reins. She was kicking the people in front and throwing herself on the floor in front of the people next to us stepping on their feet. There were some children playing down the front with the pebbles so I considered maybe she could go down there so I could let go of her safely.
I forgot that Freya likes to throw things and the pebbles were soon flying through the air to more disgusted looks from the other parents, (and kids) trying to divert her from that she then ran off up the opposite steps and off through the park.
I've noticed I always seem to be wearing flip flops when she does this so am unable to run at her speed!
With her tucked under my arm again I returned her to our seat, amazed that no one had stolen my purse and phone!
Fortunately peppa then appeared which briefly distracted her, the problem now was that she wanted to go down and see peppa and they were doing it one kid at a time so they could take photos!
I tried to remind her of when the lady came to play at home and they'd taken turns, I showed her how many children there were before her and then it will be Freya's turn.
This didn't defuse the tantrum but did mean when it was her turn she actually stood and smiled for the photo, before going back into a tantrum because we had to leave for the next childs turn! :/
My partner was by now sat on the opposite steps with a very amused expression on his face!
I thought the promise of an ice cream was sure to bring her round so we headed off to the hut. Unfortunately so had everyone else on this blisteringly hot day! My partner went off to feed the baby and I was left with Freya in the queue, I'm sure everyone in the queue thought I was very cruel keeping her attached to me as she tugged and tugged at the reins screaming "let go of me!", I kept saying again it will be Freya's turn soon and tried to distract her by asking which ice cream she was going to have. Choosing can often take her an excruciating amount of time but when I wanted her to take ages she just said "strawberry" and carried on yelling!
We went on the train and the family in our carriage actually got out at the half way point to escape :/
We managed about another hour before exhausted we headed back to the car. Freya later was all smiles when we talked about seeing the animals and peppa, "see again" she said!
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