I was so proud of Freya last night and wanted to share to show how's she's growing and changing :)
I decided to pop to the post office straight from school to post a parcel for my husband.
Freya came out of school noticeably excitable, jumping and waving her arms about and being very noisy, this continued up the road and as we were nearing the post office door she managed to twist her ankle with jumping about and was screaming and crying. After comforting her (which is always a challenge for me as I always feel if she hadn't been messing about it wouldn't have happened and I can't stand her flinging herself all over me dribbling and screaming) she managed to hobble into the post office.
There was a queue as usual and I was trying hard myself not to get stressed about what might occur while we were waiting. Freya was babbling about them not doing the right sweets in here so I sent her off to choose something that wasn't a kinder egg and not too big. (It's just my personal opinion that kinder eggs are stupidly expensive for a tiny amount of chocolate and a rubbish toy that they're likely to break or choke on)
She came back with a little packet of chewy sweets and did her big hopeful eye thing while asking if they were ok. I said yes and told her she'd have to wait until we'd paid to open them.
There were still 3 people in front of us and she was getting restless again so I tried to distract her with getting her to try and read the cards. This worked to a degree but she can be a bit rough and I was worried she would bend the cards, I was also stressing about how loud she was being as we now had about 5 people behind us in the queue as well.
We talked about the get well cards and she asked to get one for grandma who has been feeling poorly, I explained I didn't have many pennies today but she could make one and grandma would probably like that more. She replied "what if we sneak one out without paying and take it home and copy it then bring it back? Would that be ok?" I now felt very awkward that I had to explain no that was still stealing and not ok with an audience of listeners close by and she went on to ask what would happen and if a policeman would take her away for pushing someone at school and what if it was an accident etc :/
By the time it was our turn I was feeling slightly frazzled and Freya was bouncing up and down on the counter jabbering away to the lady who was trying to serve me. We had to go to the other counter to pay so she excitedly put her sweets up to be beeped. I had only got £3 left in the bank so needed to pay on my card and it was then that the lady informed me the card machine wasn't working! I had absolutely no change in my purse and had to tell Freya that after holding the chewy sweets for about 15 minutes and waiting so patiently that she now had to leave them there :(
I was fully aware how hard she was going to take this and despite the opinion that we can't understand others feelings I often feel them too much and can't cope and end up in a worse state myself.
Her little face went bright red, her eyes welled to breaking point with tears, she fixed her eyes on mine and squeezed my hand and said "that's funny mummy isn't it?" "it's funny isn't it?" "isn't it mummy?" I could see her breathing faltering as she repeated it over and over. Clearly she didn't think it was funny and she was trying so hard to pretend it was ok I could have burst into tears myself.
The lady apologised but I was too busy trying to plan what was best to say I think I ignored her, I didn't want to over sympathise and make her cry nor did I want to brush off how she was feeling like it wasn't important. I squeezed her hand tight and said "no it's not funny Freya but we can go to another shop and get you the same sweets" before departing quickly from the shop.
Once outside we walked quickly and I told her she was a very good girl and asked what she'd like to get from the other shop. The post office don't do lollies which are her favourite and the other shop does so I was hoping she would have that to look forward to on the walk.
By the time we got to the other shop she was ok and chose herself another packet of chewy sweets in the end, not exactly the same and one she hadn't had before so that was another achievement and she munched them all the way home.
Disappointments are hard for any child but much harder for a child with autism to understand and she could so easily have had a meltdown about that lack of understanding and the overwhelming of her emotions but she didn't, she tried to control how she felt by repeating something over and over (she does this a lot, I'm not sure why, maybe to help her process it or to drown out something sensory as it's often when we're out and about) and she managed to calm herself. I was so proud of her I could have smothered her in kisses and I even remembered to tell her :)
Tuesday 17 November 2015
Friday 28 August 2015
Fit for work? It depends on the job!
Those of you who follow my blog will know that last year I started working for Waitrose after a long break from employment bringing up the kids and doing my degree.
I managed quite well at the job, I got stressed now and again and ended up having to confess I had Aspergers to explain why I'd been virtually in tears the one day they didn't send me for my lunch break within 45mins of the usual time!
After that chat with my manager she made sure I was always told at the start of my shift roughly what time I'd be going for my break :)
It's not the first job I'd had and I didn't think getting a job would be as hard as it was.
I have noted over the years that I'm never the first person to get the job I apply for, I am the next on the list when their first choice turns out to be unreliable or doesn't like the job etc
That used to annoy me but since my diagnosis and my acceptance that on face value I can't always hold my own and can be a tad shy and awkward I've come to see it as proof of my reliable nature.
The first job I had was at 13, I worked in the local newsagent which was very small but I mainly worked alone and had a variety of little jobs to do to keep me busy. The owner was nice and made me lunch and I had customers who came in and bought me chocolate or sweets. I worked there until I fell pregnant at 17 when she felt it best I leave. I think I did well at this job.
The next job I had was at a train station in the newsagent where I worked from 6am with all the commuters rushing through throwing their change at the counter for you to rummage through the sweets to find or screaming at you for not having their paper. You would think this would have been too stressful for someone with my high anxiety levels but I still did ok. I put this completely down to the young lady I worked with. She would come in singing at 5.45am and rarely lost that smile and happy outlook which made it pretty hard to get grumpy. She had been doing the job a few years and made me feel very safe and looked after. She later became a good friend of mine :) I left this job when I had my first baby, I lost the first one in case you're confused.
When my daughter was 6 months I got a job at a small video rental store in the evenings. It was a warm friendly place with regular customers and I really enjoyed organising the videos by number and of course getting to watch all the new releases. I remember them releasing the first x files box set :)
I worked here for a few years and the only problem I remember was getting along with some of the other staff. My manager was sacked for sexual harassment and I had been oblivious to the fact that most of what he said was highly inappropriate and unprofessional.
The only work I did after that was volunteering at the girls school for lunch duties and listening to reading etc
When I was working at Waitrose I had no idea how well I was being treated and I did get stressed with the noise levels in the store sometimes especially if I was on the kiosk near the cafe with the coffee machine going. I did forget to make eye contact with the customers sometimes. I tend to go bright red when people talk to me and this was commented on a few times. One of the toughest things was fighting the tiredness. I find concentrating on getting things right for the job and all the social interactions incredibly tiring. After an hour with my therapist I am fit for nothing but sleep because it's so incredibly draining engaging so intensely for an hour and challenging your thoughts and beliefs it totally knocks me for 6. Therefore working a 6 hour shift is really draining for me, I'm not lazy I'm just so overwhelmed by all the sensory input and all the thinking involved in trying to appear as though I'm like everyone else.
You may wonder then why I decide to leave Waitrose for a job elsewhere doing a different role? In simple terms I wanted to be closer to home. Getting to Waitrose involved an hour and a half's travelling if I had to get myself there. This included a train journey, a long walk and a bus ride, all of which cause me a lot of anxiety. You wouldn't know if you saw me sat on the train station that I was having constant visions of throwing myself under a train and when the fast trains go flying through I'm screaming internally with terror. You wouldn't see how uncomfortable I am sat on the bus with people talking and listening to music and smelling weird. I internalise all this anxiety and at some point it comes out in the form of a melt down or more often just me being snappy and mean to my family. I just look miserable from the outside (so I've often been told) like I'm a moody cow, which I guess I am :) but really I'm just frightened, terrified by people and their unpredictable natures, deafened by noises, blinded by lights, tortured by the visions in my head and confused and stressed by the constant chatter in my head trying to make sense of it all.
Maybe I should not have been surprised therefore that my new job did not go well. My first impression on visiting was 'wow, that's a small space behind the counter and there's about 4 girls trying to squeeze past each other while bustling about busy with orders' you see my instincts were spot on that this may be an issue for me.
The first day was truly awful, 8 hours on my feet rushing orders back and forth, carrying heavy trays, tying to learn how to use the coffee machine, (which was less annoying when making the noise myself?!) being told different ways to do things by different people, 30 mins for lunch when you're not sure how to get to the canteen meaning wolfing down half your dinner before running back. I genuinely thought I was going to break or die. Every part of my body was in agony by the time I finished and my head felt like it was going to explode.
I told myself my body would get used to the work but my head was a different matter.
The next shift was no better, there was no let up in the pace, no chance for a sip of water or a loo break. I had a 6 hour shift that day and was told I was not entitled to a break. I don't do well when I haven't eaten and I knew this would only add to my problems.
The other girls seemed impatient with me, I was always in the way, I had to be reminded over and over to check for tables that needed clearing. I couldn't get the coffee right. It was hot, I had such a bad pain in one foot I could barely walk.
The next shift was the day after so I'd had no time to recover, I tried to escape into the kitchen to wash dishes where at least I could focus on one task and was not being constantly touched and shunted to one side while being given several different jobs in the space of 5 minutes.
I struggled to remember all the rules while serving, I apologised countless times for getting them wrong. I tried to remain friendly and upbeat but it was all getting too much. I tried to ask one of the others about an order and was ignored twice then told to do something else but I couldn't, I'd been asked about an order by a customer and I needed to answer her before I could do something else.
I snapped both internally and literally, I couldn't wait to get out and I knew I couldn't go back.
I felt like a mental patient there, like I had no grasp on anything in my life. Even when I got home I couldn't function, it was as if I'd been physically assaulted and mentally tortured for days. I felt ill, I felt really disabled and I felt as though I'd never be able to do a job again.
It took a while and a reminder from my husband that I could manage at work, I'd managed at Waitrose. I'd still struggled with some things and some days I'd been very stressed and taken extra medication and then had trouble staying awake, but on the whole I'd done ok. Both my husband and therapist have said I coped better in general when I was working there, maybe having the time out from the stress of family life or having something for me to focus on that I felt I was doing well with? I don't know what it was and I don't know if I was coping better. When you're in a constant state of high anxiety it's hard to notice the small moments when you smiled, relaxed for a millisecond, to feel proud that you helped someone or that you managed a situation well.
Anxiety is huge for me, every minute of the day I am on high alert, my jaw is clenched, my head is running overtime processing and making up nonsense that just adds further to my anxiety.
I have sometimes felt like I should have achieved more given that I have a degree and I know many people think working in a shop is a sad and somewhat pathetic job but now I see what an achievement this was for me. I may be over qualified in academic terms but I was born with restrictions and I have struggled for nearly 40 years to understand why I have these. You can't see them from the outside but they're very real for me.
There is a lot of talk right now about getting disabled people into work and especially those with mental problems and it frightens me. I was lucky to find jobs where I could manage my anxiety, where I had people willing and able to make adjustments for me even before I knew I needed them.
Not everyone will be this lucky and a bad experience like I had could totally break someone who is forced to remain at that job either by the system or because they need to feed themselves.
If I had had to stay in that job it would have broken me, I would have had a nervous breakdown. I am lucky that I am in a position where I could walk away and with a hopeful heart re-apply for my job at Waitrose :)
I managed quite well at the job, I got stressed now and again and ended up having to confess I had Aspergers to explain why I'd been virtually in tears the one day they didn't send me for my lunch break within 45mins of the usual time!
After that chat with my manager she made sure I was always told at the start of my shift roughly what time I'd be going for my break :)
It's not the first job I'd had and I didn't think getting a job would be as hard as it was.
I have noted over the years that I'm never the first person to get the job I apply for, I am the next on the list when their first choice turns out to be unreliable or doesn't like the job etc
That used to annoy me but since my diagnosis and my acceptance that on face value I can't always hold my own and can be a tad shy and awkward I've come to see it as proof of my reliable nature.
The first job I had was at 13, I worked in the local newsagent which was very small but I mainly worked alone and had a variety of little jobs to do to keep me busy. The owner was nice and made me lunch and I had customers who came in and bought me chocolate or sweets. I worked there until I fell pregnant at 17 when she felt it best I leave. I think I did well at this job.
The next job I had was at a train station in the newsagent where I worked from 6am with all the commuters rushing through throwing their change at the counter for you to rummage through the sweets to find or screaming at you for not having their paper. You would think this would have been too stressful for someone with my high anxiety levels but I still did ok. I put this completely down to the young lady I worked with. She would come in singing at 5.45am and rarely lost that smile and happy outlook which made it pretty hard to get grumpy. She had been doing the job a few years and made me feel very safe and looked after. She later became a good friend of mine :) I left this job when I had my first baby, I lost the first one in case you're confused.
When my daughter was 6 months I got a job at a small video rental store in the evenings. It was a warm friendly place with regular customers and I really enjoyed organising the videos by number and of course getting to watch all the new releases. I remember them releasing the first x files box set :)
I worked here for a few years and the only problem I remember was getting along with some of the other staff. My manager was sacked for sexual harassment and I had been oblivious to the fact that most of what he said was highly inappropriate and unprofessional.
The only work I did after that was volunteering at the girls school for lunch duties and listening to reading etc
When I was working at Waitrose I had no idea how well I was being treated and I did get stressed with the noise levels in the store sometimes especially if I was on the kiosk near the cafe with the coffee machine going. I did forget to make eye contact with the customers sometimes. I tend to go bright red when people talk to me and this was commented on a few times. One of the toughest things was fighting the tiredness. I find concentrating on getting things right for the job and all the social interactions incredibly tiring. After an hour with my therapist I am fit for nothing but sleep because it's so incredibly draining engaging so intensely for an hour and challenging your thoughts and beliefs it totally knocks me for 6. Therefore working a 6 hour shift is really draining for me, I'm not lazy I'm just so overwhelmed by all the sensory input and all the thinking involved in trying to appear as though I'm like everyone else.
You may wonder then why I decide to leave Waitrose for a job elsewhere doing a different role? In simple terms I wanted to be closer to home. Getting to Waitrose involved an hour and a half's travelling if I had to get myself there. This included a train journey, a long walk and a bus ride, all of which cause me a lot of anxiety. You wouldn't know if you saw me sat on the train station that I was having constant visions of throwing myself under a train and when the fast trains go flying through I'm screaming internally with terror. You wouldn't see how uncomfortable I am sat on the bus with people talking and listening to music and smelling weird. I internalise all this anxiety and at some point it comes out in the form of a melt down or more often just me being snappy and mean to my family. I just look miserable from the outside (so I've often been told) like I'm a moody cow, which I guess I am :) but really I'm just frightened, terrified by people and their unpredictable natures, deafened by noises, blinded by lights, tortured by the visions in my head and confused and stressed by the constant chatter in my head trying to make sense of it all.
Maybe I should not have been surprised therefore that my new job did not go well. My first impression on visiting was 'wow, that's a small space behind the counter and there's about 4 girls trying to squeeze past each other while bustling about busy with orders' you see my instincts were spot on that this may be an issue for me.
The first day was truly awful, 8 hours on my feet rushing orders back and forth, carrying heavy trays, tying to learn how to use the coffee machine, (which was less annoying when making the noise myself?!) being told different ways to do things by different people, 30 mins for lunch when you're not sure how to get to the canteen meaning wolfing down half your dinner before running back. I genuinely thought I was going to break or die. Every part of my body was in agony by the time I finished and my head felt like it was going to explode.
I told myself my body would get used to the work but my head was a different matter.
The next shift was no better, there was no let up in the pace, no chance for a sip of water or a loo break. I had a 6 hour shift that day and was told I was not entitled to a break. I don't do well when I haven't eaten and I knew this would only add to my problems.
The other girls seemed impatient with me, I was always in the way, I had to be reminded over and over to check for tables that needed clearing. I couldn't get the coffee right. It was hot, I had such a bad pain in one foot I could barely walk.
The next shift was the day after so I'd had no time to recover, I tried to escape into the kitchen to wash dishes where at least I could focus on one task and was not being constantly touched and shunted to one side while being given several different jobs in the space of 5 minutes.
I struggled to remember all the rules while serving, I apologised countless times for getting them wrong. I tried to remain friendly and upbeat but it was all getting too much. I tried to ask one of the others about an order and was ignored twice then told to do something else but I couldn't, I'd been asked about an order by a customer and I needed to answer her before I could do something else.
I snapped both internally and literally, I couldn't wait to get out and I knew I couldn't go back.
I felt like a mental patient there, like I had no grasp on anything in my life. Even when I got home I couldn't function, it was as if I'd been physically assaulted and mentally tortured for days. I felt ill, I felt really disabled and I felt as though I'd never be able to do a job again.
It took a while and a reminder from my husband that I could manage at work, I'd managed at Waitrose. I'd still struggled with some things and some days I'd been very stressed and taken extra medication and then had trouble staying awake, but on the whole I'd done ok. Both my husband and therapist have said I coped better in general when I was working there, maybe having the time out from the stress of family life or having something for me to focus on that I felt I was doing well with? I don't know what it was and I don't know if I was coping better. When you're in a constant state of high anxiety it's hard to notice the small moments when you smiled, relaxed for a millisecond, to feel proud that you helped someone or that you managed a situation well.
Anxiety is huge for me, every minute of the day I am on high alert, my jaw is clenched, my head is running overtime processing and making up nonsense that just adds further to my anxiety.
I have sometimes felt like I should have achieved more given that I have a degree and I know many people think working in a shop is a sad and somewhat pathetic job but now I see what an achievement this was for me. I may be over qualified in academic terms but I was born with restrictions and I have struggled for nearly 40 years to understand why I have these. You can't see them from the outside but they're very real for me.
There is a lot of talk right now about getting disabled people into work and especially those with mental problems and it frightens me. I was lucky to find jobs where I could manage my anxiety, where I had people willing and able to make adjustments for me even before I knew I needed them.
Not everyone will be this lucky and a bad experience like I had could totally break someone who is forced to remain at that job either by the system or because they need to feed themselves.
If I had had to stay in that job it would have broken me, I would have had a nervous breakdown. I am lucky that I am in a position where I could walk away and with a hopeful heart re-apply for my job at Waitrose :)
Friday 21 August 2015
Freya goes state side!
Freya had her first big holiday this year, all the way to Florida
I was dreading the flight and it was horrific but I have to say Freya was not a huge problem, Lucas took the medal for the most screaming ever done on a flight and causing most parental reprimands for unbuckling his seat belt!
I was dreading the flight and it was horrific but I have to say Freya was not a huge problem, Lucas took the medal for the most screaming ever done on a flight and causing most parental reprimands for unbuckling his seat belt!
So here she is on our first day, at Magic Kingdom. She had a makeover hence the hair but has already got the beautiful dress soaking by this point in the water play areas
The makeover was amazing and totally worth the high price tag in my opinion. She was so well behaved and just soaked up all that attention!
Freya really loved the characters, just look at that smile :)
For me this is why we went, not for the rides
They were busy days...
They both really enjoyed the water park, Freya loved the freedom the life jacket gave her
Freya enjoyed spending time with her big sister who doesn't live with us :)
We visited Hogsmeade...
Met Curious George.....
Played in the pool with her other big sister...
We saw a LOT of cool motorbikes
We visited the East coast....
The West coast..
poor Freya!
We had an amazing day at discovery cove :)
When I told her the chinese restaurant didn't serve chips!
Toddlers and teenagers loved dinosaur world
We had an amazing and tiring time :)
Freya photos
So here's a few pictures of Freya in the last few weeks
Just an average morning outfit!
She was very nervous but really enjoyed herself
First time on a kayak with mummy!
A rare sunny day in Wales!
The earmuffs were on constantly for a good few months, thankfully she's given them up again for now. We lost this dog somewhere on our trip to Yorkshire and had to make an emergency visit to Ikea to buy a new one! I'd like to point out we were not driving at this point as I took the photo before strapping her in!
A little older and little crazier
So I didn't do well with keeping up to date with the blog :/ there are a million excuses but none of them particularly good!
I started reading "I have Aspergers" by Erin Clemens and it inspired me to take the blogging back up
Life with Freya has never been dull, I am still trying to see that as a positive, however, my husband has become increasingly bogged down with the children's behaviours in the last 6 months or so and he has expressed the opinion that we need to try to have Freya put on medication in order to retain any kind of control over her behaviour :(
For what it's worth I hate taking my own medication as I have said before as I feel I am sedating myself to make myself more manageable for others at the expense of being myself and I'm often left feeling I'm just sort of dreaming my way through the days. Therefore I don't think that sedating a nearly 5 year old should even be an option just because we can't find a way to manage her.
I am not saying we are bad parents, on the contrary we have been to so many courses to help us understand her needs and make so many adjustments and concessions for her already but we are starting to notice that the things that were working before just aren't effective anymore.
We had been noticing for a while that while other kids came out of school tired and slightly more likely to sit down with their tea and favourite tv programme when they got home that Freya was in fact still "bouncing" at the end of school. I understand that due to her sensory needs she is very happy at school, she thrives on all that busy interaction you get at nursery and the routine is further reassuring for her. Home is by comparison fairly boring and due to mummy's sensory needs she is asked not to bounce on the furniture and to refrain from screaming at the top of her voice.
Given that she NEEDS to do these things school does pose some restrictions on her being herself so this further adds to her release of that inner ferret when she gets home.
I can fully see that from the outside this may look like bad parenting skills and a lack of provision at home for her to express her sensory needs but I can't seem to get the professionals to see that she is so affected by her senses that she is a totally different child at home than school through no fault of ours. If her teachers came to the house and tried to manage her they would eventually have the same problems as us as it's the school environment that helps keep her calm and focused and I just can't recreate that at home, nor would I wish too for my own sake!
This poses the recent problem that the pediatrician wants to diagnose her with adhd but to do this they need to see this in her behaviour at school as well as at home. Our experience so far tells us they don't struggle with her other than the occasional getting a bit too silly as they put it.
I don't know if this will change this term as she goes into full time reception where she will be expected to sit for longer periods concentrating and it will not be acceptable to shout out of turn or not sit still. I do feel the differences may become more apparent and while this will help us it's not going to be easy for Freya.
I forgot to say at her appointment last week the pediatrician thought it a splendid idea to medicate her and even let us know that while they don't usually medicate until age 6 she may be able to get a small dose until then?! I let her know that I thought it should be my husband who was medicated since he finds living with us all so difficult!
There used to be a definite pattern of hyper activity after tea and it didn't seem to matter how much she'd been stimulated before that point. Now we are seeing this type of off the wall behaviour from when she gets up some days and within a few hours we are both pulling our hair out.
If you imagine being sat on the sofa and next to you is a wild squirming child throwing her legs up the back of the chair, climbing on the back of the chair, flailing her legs out and in repeatedly and jumping her bum off the seat meanwhile kicking you nearly every time while either shouting or singing full volume a repetitive something then beginning to pounce on your body with all her weight while shoving her face within an inch of yours grinning madly you get a small idea what life with Freya might be like. If you're standing then she's probably attached herself to one of your legs so you can only move by dragging her along or is madly jumping up at you talking non stop.
The talking is a big problem and a huge issue in our marriage. It is impossible to talk to each other at any point while Freya is up, she can't go more than 6 seconds without speaking, yes we timed her, and if you try she just screams, talks louder or sings to a level that you can't hear yourself so we give up and the tension builds. The concept of waiting your turn to speak is just lost on her and yet I slightly understand as I know I butt in when people are talking as I'm worried I might forget what I was going to say.
There has been a resurgence of jumping on Lucas's back and pulling him around by his head which obviously you have to stop and just a general increase in not listening or responding to the 1-2-3
It is very frustrating when you are trying to explain to a highly intelligent child that she's hurting you or her brother or that she's doing something unsafe and all you get is her laughing in your face and carrying on the behaviour, often she churns it up a level at this point! I really am at my wits end what to do with her when she's like this, you used to be able to distract her onto something else but most of the time she's making such a racket she can't even hear you and it's like somethings come loose in her head temporarily and she no longer remembers how to communicate with you.
She is such a beautiful, happy little girl and it breaks my heart the thought of loosing the bond I have with her but I find myself being stretched beyond reason these days by her full on behaviour.
Does this sound familiar? I would love to know how other parents manage this type of behaviour as I know we are not alone. Has your child been helped by medication?
I feel quite sad at all this negative focus, I will post some photos of her happy smiley face on the next post
I started reading "I have Aspergers" by Erin Clemens and it inspired me to take the blogging back up
Life with Freya has never been dull, I am still trying to see that as a positive, however, my husband has become increasingly bogged down with the children's behaviours in the last 6 months or so and he has expressed the opinion that we need to try to have Freya put on medication in order to retain any kind of control over her behaviour :(
For what it's worth I hate taking my own medication as I have said before as I feel I am sedating myself to make myself more manageable for others at the expense of being myself and I'm often left feeling I'm just sort of dreaming my way through the days. Therefore I don't think that sedating a nearly 5 year old should even be an option just because we can't find a way to manage her.
I am not saying we are bad parents, on the contrary we have been to so many courses to help us understand her needs and make so many adjustments and concessions for her already but we are starting to notice that the things that were working before just aren't effective anymore.
We had been noticing for a while that while other kids came out of school tired and slightly more likely to sit down with their tea and favourite tv programme when they got home that Freya was in fact still "bouncing" at the end of school. I understand that due to her sensory needs she is very happy at school, she thrives on all that busy interaction you get at nursery and the routine is further reassuring for her. Home is by comparison fairly boring and due to mummy's sensory needs she is asked not to bounce on the furniture and to refrain from screaming at the top of her voice.
Given that she NEEDS to do these things school does pose some restrictions on her being herself so this further adds to her release of that inner ferret when she gets home.
I can fully see that from the outside this may look like bad parenting skills and a lack of provision at home for her to express her sensory needs but I can't seem to get the professionals to see that she is so affected by her senses that she is a totally different child at home than school through no fault of ours. If her teachers came to the house and tried to manage her they would eventually have the same problems as us as it's the school environment that helps keep her calm and focused and I just can't recreate that at home, nor would I wish too for my own sake!
This poses the recent problem that the pediatrician wants to diagnose her with adhd but to do this they need to see this in her behaviour at school as well as at home. Our experience so far tells us they don't struggle with her other than the occasional getting a bit too silly as they put it.
I don't know if this will change this term as she goes into full time reception where she will be expected to sit for longer periods concentrating and it will not be acceptable to shout out of turn or not sit still. I do feel the differences may become more apparent and while this will help us it's not going to be easy for Freya.
I forgot to say at her appointment last week the pediatrician thought it a splendid idea to medicate her and even let us know that while they don't usually medicate until age 6 she may be able to get a small dose until then?! I let her know that I thought it should be my husband who was medicated since he finds living with us all so difficult!
There used to be a definite pattern of hyper activity after tea and it didn't seem to matter how much she'd been stimulated before that point. Now we are seeing this type of off the wall behaviour from when she gets up some days and within a few hours we are both pulling our hair out.
If you imagine being sat on the sofa and next to you is a wild squirming child throwing her legs up the back of the chair, climbing on the back of the chair, flailing her legs out and in repeatedly and jumping her bum off the seat meanwhile kicking you nearly every time while either shouting or singing full volume a repetitive something then beginning to pounce on your body with all her weight while shoving her face within an inch of yours grinning madly you get a small idea what life with Freya might be like. If you're standing then she's probably attached herself to one of your legs so you can only move by dragging her along or is madly jumping up at you talking non stop.
The talking is a big problem and a huge issue in our marriage. It is impossible to talk to each other at any point while Freya is up, she can't go more than 6 seconds without speaking, yes we timed her, and if you try she just screams, talks louder or sings to a level that you can't hear yourself so we give up and the tension builds. The concept of waiting your turn to speak is just lost on her and yet I slightly understand as I know I butt in when people are talking as I'm worried I might forget what I was going to say.
There has been a resurgence of jumping on Lucas's back and pulling him around by his head which obviously you have to stop and just a general increase in not listening or responding to the 1-2-3
It is very frustrating when you are trying to explain to a highly intelligent child that she's hurting you or her brother or that she's doing something unsafe and all you get is her laughing in your face and carrying on the behaviour, often she churns it up a level at this point! I really am at my wits end what to do with her when she's like this, you used to be able to distract her onto something else but most of the time she's making such a racket she can't even hear you and it's like somethings come loose in her head temporarily and she no longer remembers how to communicate with you.
She is such a beautiful, happy little girl and it breaks my heart the thought of loosing the bond I have with her but I find myself being stretched beyond reason these days by her full on behaviour.
Does this sound familiar? I would love to know how other parents manage this type of behaviour as I know we are not alone. Has your child been helped by medication?
I feel quite sad at all this negative focus, I will post some photos of her happy smiley face on the next post
Thursday 29 January 2015
Now I'm 4!
So it's been a long time since I wrote a blog about Freya or indeed any of us.
Life has and still is hectic and lots has happened since my last entry.
Firstly a photo seems a good start, she's certainly grown up a lot :)
Life has and still is hectic and lots has happened since my last entry.
Firstly a photo seems a good start, she's certainly grown up a lot :)
This is Freya on christmas morning with her new Teal doll
We moved into our new home in July and it's a project and a half having not been touched for nearly thirty years. We are awaiting adaptions for my husband and some adaptions have been made to keep Freya and Lucas (who is fast following in her mischievous footsteps) safe!
We have been blessed with a very large garden and they have both enjoyed running riot
We've acquired a cat! Logan
My daughter got married and had a baby, my first grandchild and Freya's niece!
Freya started a new school in the nursery section and is doing incredibly well, nothing's changed there, she's still a star at school and an information sponge!
Her memory just gets better and better and she can recite whole books to me now from memory even though it's often at such a pace I can't make out half of it!
I'm still struggling to make people understand my condition and how it impacts me but on the plus side I have got myself a part time job working at Waitrose which I love.
A big adventure is just round the corner for us as we prepare for our first flights with the children next week to Florida, Freya is beyond excited to be going to disney and just as excited that the villa has a pool! I am frankly terrified at the prospect of occupying the 2 of them for a 9 hour flight but am hopeful it will all be worth it to see their little faces when they get there :)
I will try to find the time to share our holiday stories before she gets another year older!
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