anxiety, autism, dance, depression, diet, excercise, general, health, health and fitness, lifestyle, mental health, parenting, post natal depression, special needs, wellbeing

My postnatal depression story

I’m no longer ashamed to admit that I have trouble remembering the first two years of my sons life. I can not tell you at what age he got his first tooth, his favourite food as a baby, his first word or when he began to sleep through the night.  I’m not even sure of what age he took his first steps.

My second child, I can tell you all her milestones. I think that’s mainly due to the amount of times I’ve had to go over them with paediatricians, therapists, doctors. She has autism, and was finally diagnosed at age six just last year.

My youngest,  Emily. I know all her firsts. Mainly because I was extra vigilant looking out for any red flags we had with my eldest daughter.

Each pregnancy was different. All had the usual sickness and discomfort.  But my third pregnancy, I just wasn’t feeling those feelings you associate with pregnancy. The excitement,  the happiness, the eagerness. I didn’t really feel anything.

I brought my feelings (or lack of) up with my midwife whilst getting my bloods done. I was assured it was perfectly normal , due to hormones and it would all settle down probably by my next appointment.

Only it didn’t.  I didn’t take joy in shopping for baby clothes, I was in no rush to pack my hospital bag, I just wasn’t feeling it. I was emotionless.

I booked a 3D scan around the 32 week mark, hoping that would make everything feel more real, I don’t think it did. It was a wonderful experience, of course it was, but the sadness continued.

The years which followed my daughters birth in September 2011 were dark, very dark. I was dealing with the likelihood of my oldest daughter having autism, which was causing stress along with that lingering feeling of worthlessness. But before even falling pregnant with my daughter, I was dealing with body image issues. I hated my appearance to the point it was affecting my everyday life. These feelings got worse. I’d stay home all day unable to face the world, or I’d only leave the house when it was dark. I’d avoid mirrors and my reflection in windows. I’d panic if we had a party or wedding to go to. I hide away in the toilets to avoid any social interaction.  And my heart would pound and my  head spin if I saw anyone with a camera.

I’d apologise to my children, as small as they were and unable to understand, for being a useless mother. I’d tell them I loved them as the tears rolled down my face, and that I was doing my best. I’d ask my husband why he was with me and give him the option to leave, which always left him gobsmacked and confused.

I’d go to bed each night and secretly wish I wouldn’t wake up. I’d have dreams of living a life where I am happy and have friends around me, and wake up devastated when I realised they were just that. A dream

My husband found me a video on Youtube about the ‘Black dog’, and asked me to watch it. I did. I broke down and he told me to get help.

I went to my GP, told her my feelings and filled in a questionnaire. From that she gathered I had depression and extreme anxiety. I was referred to the Mental Health Team. Again. I was already in therapy before falling pregnant with Emily dealing with body image issues. Hence my panic when faced with the prospect of having my photo taken. I was a mess. An absolute broken mess

That was September 2013. From then on I had fortnightly visits from my Health Visitor. She didn’t come to pry or check up on me. She came to lend and ear aswell as advice and support, and I thanked her for that.

October 2013 I began attending well-being courses. I picked up techniques to deal with stress, become assertive and gain confidence.

Summer 2014 I had my first appointment with I think it was a life coach. She pretty much assessed me to see if she could help. She couldn’t. My condition was too extreme.  I was then referred to a clinical psychologist. Again

I met with my therapist every two weeks and I think I had around 10 sessions before I decided I felt ready to face the world alone once again.

I learned through these sessions I was suffering with post-natal depression, and that the depression had even grown DURING pregnancy. I found out through a quick glance at my notes at the doctors surgery as they came up on the computer screen during an appointment, that  I had been suffering with PND after the birth of my second child. I found out through a letter sent to my doctors and a copy to sent to me, that I’d even been suffering with PND after the birth of my first child way back in 1999. I had my son at 21 so I’d spent most of my adult life with depression. I genuinely thought I was just useless, unlikable, disgusting. I was non of those. I was depressed.

PND took away my memories of my first child growing from baby to toddler, it kept me indoors, it filled me with fear, took away my self-esteem and stripped me of my confidence

When the therapy ended, I took up blogging. I decided to chase my dreams and enrolled on a distance learning course. This both occupied my mind and my confidence began to grow. I‘ve taken up exercise, and spend most days either in a gym or an exercise class. I’ve made new friends. I even spend two hours on a Sunday night as part of a team for a local radio station. I’m still building up my confidence to become more involved, but I know I will. I know I can do it. I can do anything if I continue to believe in myself.

Over the months I’ve thrown myself into situations I would usually avoid. I’ve done things I could never imagine doing and I am in a place now where I have never been in before. A very good place and although I am an anxious person by nature, I have my anxiety under control and I will never let depression take over my life or steal my memories again.

general, lifestyle, parenting

A little girl and her Random Act of Kindness

The most beautiful, heartwarming thing happened to me yesterday afternoon, so special that I know I need to share with the world.

I was walking through Whitley Bay town centre with my daughter Jessica yesterday, when I heard someone shout ‘Excuse me’, I turned around expecting someone to tell me I’d dropped something, or ask who my energy supplier is – the norm in my home town
But instead a young girl aged around 8 or 9 handed me a bunch of daffodils, a chocolate bunny and a note and said ‘These are for you’ completely thrown I asked ‘Oh my goodness, why’? and she replied ‘Because you’re special, and people need to be told they’re special. And we all need to be kind to each other. So these are off me and my Grandad’
rak
Completely gobsmacked and amazed by this kind gesture, I thanked her and told her she’s extremely kind and that makes her special too, and wandered home, abandoning what I had went out to do. I needed to get home and tell my son, and share the story on social media there and then, when full of emotion.
Reading over the note again, I saw the little girls, name is Cassidy. I have since found her parents on Facebook and my post has gone viral and full of compliments Cassidys mum and dad can read to her to let her know what a special little girl she is.
Of course I was not the only person to experience this amazing act of kindness yesterday, I have heard from at least five or six others too.  One my friend Jo who runs local homeless charity Making Winter Warmer and it’s great to see her on the receiving end of kindness for all the good work she does.
This little lady and her Grandad completely made my day, if not my year and I’ll keep the note forever and look at it every single time I feel I’m having a difficult day.
rak2
On the note Cassidy states we need to be kind to others, and she’s right, we absolutely do, and as parents, we need to teach our children to do the same ❤
birth, general, health, humour, lifestyle, parenting, post natal depression, pregnancy

The truth about pregnancy

We’ve all read stories and watched documentaries where mums-to-be talk about feeling so maternal and womanly and fulfilled now that their body is doing all the things it’s made to do, and how they are fully embracing their expanding bodies.

But maybe we should talk more honestly and openly about pregnany and realise it’s perfectly ok to admit you’re finding it tough and wishing the 9 months over without feeling inadequate or ungreatful.

So I thought I’d share an insight into what to really expect during pregnancy, based on my own experiences

‘Morning’ sickness

How naive was I when I thought it would just automatically stop at I around 12 weeks, like it’s on a timer. It lasted all day, every day, with all three babies. I’m not talking just little bouts of nausea as you go about your day. But a full on hangover. I spent the majority of 9 months with my head in the toilet. Any toilet.

Baby brain

The pregnancy-induced fog which many women experience and scientist ‘claim’ may exist. It does exist and we don’t need a dude in a white coat in a lab to confirm it.

You’ll forget everything where the ability to remember even your own name becomes difficult. I was asked the DOBs of my two children whilst pregnant with my third, along with my due date at a doctors appointment. All I could offer was a blank stare which just screamed ‘are you freaking serious’?

I ended up skint for four days when I incorrectly entered my pin number in the cash point three times and said goodbye to my card.

It’s not just a pregnancy thing either. You’ll still be going to Boots for nappies but leaving with toothpaste and finding your keys in the fridge well after the birth

The sonographer isn’t always correct

From my 20 week scan with my first, we eagerly awaited the birth of ‘Chloe’  and I built up a collection of pretty little frilly dresses and dinky pink shoes.

Some went back to the shop once Callum arrived into the world at 42 weeks, and some my sister dressed him in anyway for a giggle and photos which we will get blown up for his 18th

Obviously technology has progressed over the last 18 years, and they were bang on the money with my other two. But I’d hold out on decorating the nursery pink or blue until little one arrives, and have a back up name of the opposite gender.

Sometimes I wonder why I didn’t just leave the sex as a surprise, but there is no bigger surprise than expecting a girl but giving birth to a beautiful baby boy.

It’s not just 9 months,

The first 20 weeks are the longest, although probably not as long as the last two weeks, or the two weeks after your due date

And if you have pregnant friends or know anyone who is due round the same times as you, they’ll give birth before you. Guaranteed

My hubby made the mistake of telling me one of his work mates had just gone on paternity leave as he walked through the door one night. My eyes widened as he realised he shouldn’t his error. I was due before his wife. I was due before pretty much anyone I knew who dropped before me

Everything makes you cry

News articles, songs, films, pregnancy books, adverts, Call the Midwife, the price of prams, everything. Especially the price of prams

Then there’s the other end of the spectrum when you get ‘the rage’. I’m not a jealous partner. And that’s not because I’m all confident in myself, I’m not. I just don’t seem to feel jealousy as an emotion.

Except whilst with child.

My hubby went to an open day at a gym with his friend. I was fine with it as first, why wouldn’t I be? Till I started to envisage hot girls in gym gear, with a tiny little waist whist mine was that of a baby hippo, and the texts went from ‘are you having a good day’?, to ‘SO ARE THERE ANY WOMEN THERE’. Yeah I felt a slight niggle of jealousy that day

The ‘glow’

Spots, dry skin, bloodshot eyes from sickness – absolute radiance

Food aversions

I remember smuggly discussing diet with my midwife right at the start of my last pregnancy. I had just lost around 50lbs so obviously wanted to gain as least weight as possible,  so sat and confidently told her how disciplined I now was and would 100% be sticking to a healthy nutritious diet of fruit and veg

I could literally only stomach bread, chicken and mash for around the first 5 months as I found myself unintentionally on some king of beige coloured food diet as anything with any colour made me want to barf.

I gained around 60lbs and only just under 9lb of that was baby, lets attribute about 20lbs to fluid, placenta, boobs and uterus, and you do the maths.

bump

Fail

Heightened sense of smell

We’re talking that of  a blood hound. It drives you crazy and it makes you nauseous.

I wasn’t living with my now hubby till about 7 months into the pregnancy, and he knew to remove all the plug-ins before going to his. My new sofa got doused in olbas oil (hubs idea) making the smell even more unbareable than that of leather which was knocking me sick in the first place, and all plastic bags went in the bin. Yes, plastic bags have a smell

I got the bus home from work during my first pregnancy and some fool got on with a pizza. I suffered for 30 minutes with the overpowering meat feasty smell wafting around in front of me.  Ran (or wobbled quickly) home down the never ending street (I lived at number 208), opened the front door and thank god there was a downstairs toilet as I just made it in time

Luckily, it doesn’t last the whole nine months, I’d say 8.

I’m gonna be a good blogger and make this more balanced. The best, most special things about pregnancy, which you think about for years and years after giving birth, probably forever, is the tiny little flutters you feel at around 16 weeks, which turn into little patters then tight squeezed wiggles and kicks which wake you up in the night and keep you awake for hours as you lie and watch growing bump knockout some rather impressive shapes.

It’s without a doubt, the best, most precious feeling in the world.

babycal

So maybe like almost everything else in your life, the best, most wonderful, most amazing things come from the hardest, darkest and most difficult of times.

 

anxiety, diet, excercise, general, health, health and fitness, lifestyle, mental health, parenting

Man Down

Things have been a little bit hectic since my last blog. My hubby has been poorly and a trip to his doctors Thursday morning led to an overnight stay in hospital, and an emergency op that night. I had to stay at home with the kids so I had a really anxious day waiting for news. He went straight to the hospital from the doctors with a very low phone battery and no charger. Meaning contact was going to be very brief. Until a nurse realised the situation Friday morning and kindly gave him a charger.

So I spent two days last week at home on my own with the kids. Feeling very worried and stressed. I didn’t really eat anything for those two days. Being anxious I had no appetite at all.

But he’s recovering really well and feeling much better now, but will be off work for a few weeks unfortunately, due to the nature of his job.

We obviously missed a PT session, and I couldn’t go my Thursday Clubbercise double. However, I did make it Friday night. I needed that hour and as it was a later class. the kids were ready for bed when I left so it was no problem for Andrew. I was able to go Sunday morning, too. I’m not sure how much the class did for me physically as my head wasn’t really with it and I don’t feel I put my all into the routines, but it definitely helped relieved some of the anxiety.

So, whilst Andrew recovers, there will be no gym for at least 4 weeks. I know I could go alone, but he’s my training partner and it doesn’t feel the same without him. And with him being off work we need to cut back on spending for a bit. Obviously I’m still going to be going to Clubbercise. I don’t just go to burn calories, I go for fun and I need that. It’s my sanity (and social life).

This last week has really got me thinking about the importance of being in good health. I was worried sick when Andrew told me he would be put under a general anesthetic during surgery. Obviously any medical procedure carries a risk, but luckily he had the fact he is well within the healthy BMI range, physically fit, and a non smoker or drinker on his side. Had he been overweight, unfit, a heavy drinker and smoker, he would have been at major risk of complications during surgery and be looking at a much longer recovery period

With all this in mind, my ‘diet’ this week has became even stricter. I feel my focus is less about the outside and more about the inside. I’m far more concerned about my health than my appearance now. I don’t want to be at risk of any kind of illness or conditions now or in the future. I want to be in the best physical health I can be for my children, and my husband.

I’m now making extra effort to make every single meal from scratch. No cereal for breakfast, no bread, no convenience cold pasta meals picked up for lunch time from the supermarket. I’ve spent so many hours in the kitchen this week, making and preparing meals.

An average day now consists of eggs, scrambled or poached, wholewheat pasta, chicken (even to snack on), protein shakes if I’m struggling for protein or after exercise, fresh fish, brown rice, veg, lots of veg.

pasta

chicken

 

salmon

But NO shop bought ‘healthy’ snacks. You know the kind. The ‘low fat’ crisps, biscuits, cakes. No justifying a bar of chocolate with ‘I’ve done 4 hours exercise this week’.

I made chocolate protein brownies today. They didn’t turn much like brownies. I think I may have followed the recipe wrong and they turned out slightly too gooey to turn into anything other than a splodge. But a chocolate splodge. A really tasty chocolate splodge.

mix

splodge

So after my many failed attempts of a diet, I know I have got this now. My aim isn’t to ‘look good for summer’. It’s to be healthy all year round and for the rest of my life

image

diet, excercise, general, health, health and fitness, lifestyle, mental health, parenting, special needs, wellbeing

So I clearly can’t blog daily. But I’ve had a really hectic weekend. My hubby spent all day yesterday in hospital after feeling ill most of this week. He’s had a virus, but by saturday morning it was getting worse so he thought it best to go get checked out.

Obviously having two young children, I had to stay at home with them. There was no phone signal at the hospital, or wifi so I couldn’t get in touch with Andrew to find out what was happening and he couldn’t contact me, so I had an anxious few hours. I did the one thing that’s really not a good idea and googled his symptoms, then started to fear meningitis.

Oh and the central heating decided it wasn’t gonna work, so I had that to stress about too.

But thankfully he’s feeling much better today, but it feels a bit like we haven’t really had a weekend as he’s spent most of thisafternoon in bed. And I had a lonely saturday night infront of the tv with no one to talk to :o(

I hardly ate with stressing out yesterday, which i know isn’t good, but I have today.

We’re also having a diffucult time with my oldest daughter since returning to school. For anyone reading this who hasn’t read my blogs about her, she was diagnosed with autism last year. The diagnosis wasn’t a shock, we expected it. But she can be quite a handul, and her younger sister copies her behaviours so it’s often like having two children on the spectrum.

Jessica lives her life at a million miles and hour and want’s everything done instantly. She’s ready for school each morning an hour and a half before transport even arrives to collect her. And Christmas morning, she asked at 7.30am if Christmas was finished yet, and if it’s Valentines day next? Not sure why a 7-year-old would even be interested in Valentines day, but it’s Jess and she loves occassions.

She did seem to calm down and stop the demanding and shouting, and running around the house over the holidays, but she’s back to being her hyperactive self since going back to school. So it can get a bit mentally exhausting. If it wasn’t for having things in my life now which I enjoy and keeps me sane, I hate to think how I’d be feeling tonight.

I’ve done the usual 4 Clubbercise classes this week, my last one being thismorning, and it’s great to be back. I have found them more tiring than I usually do, particularly the first one on thursday, but I’ll get my energy levels back up again in no time (hopefully)

I’ve ate nothing I shouldn’t have this weekend, absolutely nothing, which I’m really pleased about. It’s so easy to justify something fattening just because it’s the weekend.

So this weekend has threw things at me which I may have resolved in the past with overeating. I didn’t sleep too well last night worrying about Andrew, but I was still up and ready for Clubbercise at 9.30 thismorning. I knew if I didn’t go, I’d only lounge about, and then regret not going, and feel crap.

So here’s hoping for a better week.

asd, autism, general, health, mental health, parenting, special needs

Today I hate autism and this is why

I like to keep my blogs light-hearted, positive and happy, as that’s pretty much how I feel most of the time. But I would be lying if I implied all the time, and that life with an autistic child is all rosy and I cope just beautifully. The truth is, it isn’t and I don’t.

Today I hate autism and the reason I hate it is because I took Jessica to a pop concert yesterday, and spent most of it completely choked up inside. It’s not often we’re around other kids. We rarely go to softplay, the cinema is virtually empty whenever we go, I doubt there are parents desperately trying to entertain their kids before 10am on a sunday morning, and Jessicas party invites are few and far between. Being in a class of only 9 children, and some of those children unable to deal with sensory issues a party brings, it’s not often she brings home any invitations.

It’s when I’m in a situation where I see other children, I’m overcome with sadness. Jessicas differences become more apparent, well more apparent to me. And it hurts

The reasons I hate autism are

1)  Four years in and I’m tired of having to explain Jessicas condition to people. Not friends, I’ll answer any questions they have at all, but strangers. Whether it’s some grump complaining about her behaviour (I got evil looks off a man trying to eat his lunch in a cafe last week when I was there with the girls, which I chose to ignore), or someone being friendly and talking to her. She won’t answer any questions she is asked, I answer for her. Then I feel the need to explain she has autism and doesn’t conversate well. It hurts so bad even hearing myself say that.

2) The whole ‘label’ or ‘autism doesn’t exist’ comments I’ve had thrown at me. It’s not a label, it’s and explanation, and trust me, it exists.

3) Apologies. People ‘apologising’ when I do explain Jessica has autism. But to be fair, I’m not exactly sure how anyone should act. I mean what else can you say to that little conversation stopper.

4) The assumption that people with autism don’t show empathy, or sympathy. Jessica knows when someone is hurt, and will tell me and her teachers in school. She may not run over and ask if they are alright, but she will alert someone. That’s empathy and genuine concern. She also gives the most amazing loving cuddles you could wish for.

5) Stupid damaging articles such as this one http://www.telegraph.co.uk/education/educationnews/11553012/Smartphones-making-children-borderline-autistic-warns-expert.html Talk about demonising autism and the very thought of having a child on the spectrum. Oh the actual horror!!

6) Attitudes and reactions towards my choice to stop vaccinating my children. I chose to refuse Jessicas MMR booster, and Emily hasn’t had a single vaccination since she was 16 weeks. I’m not for one second insisting the MMR is the cause of Jessicas autism, but I’m not saying it wasn’t either. I’ve spent a lot of time reading into this and concluded that I would be silly to allow Jessica to have a booster. How would I even live with myself if I had to then watch her regress? I’m not a neglectful parent, I’m a cautious one.

7) The feeling of isolation I experience every single day. Over the years I’ve lost all confidence and even refused to leave the house sometimes. I’ve missed opportunities to make friends at parent and toddler groups, and turned down meeting up with friends and nights out. How could I possibly have enjoyed myself when I’m experiencing such sadness at home?!

8) The assumption that I’m coping fine. Jessica is on the whole very well-behaved, so I must have an easy and quiet life, right? Wrong, I’m up at a time most parents only get up at at Christmas every single day. Jessica lives at a million miles an hour. She wants her breakfast the second she is awake, then her clothes on instantly, then her shoes. Meal times – she wants pizza, but she wants it now, she doesn’t have the patience to wait for it took cook, so I find myself repeating ‘wait, good waiting’. It’s exhausting both mentally and physically.

9) Milestones taking so much longer to achieve. I hate seeing other children become more responsible and mature than Jessica and I find myself wondering if she will ever even achieve some milestones. I feel consumed with guilt that I dread seeing Emily overtake Jessicas developement. What kind of a parent dreads seeing their youngest  child reach milestones??

10) I’m constantly ‘on alert’. I follow Jessica meticulously around a park, I avoid softplays as I’m constantly scanning the damn thing looking for Jessica, which gives me a headache. I’m terrified she may wonder off so I can not take my eyes of her for a single second. I go to bed at night aware I will up in a few hours, a few hours less than I want to be. I’m constantly waiting for the next meltdown. Not that she has meltdowns like you would expect, she’s just very anxious and crys over the littlest thing, then will apologise for crying and I tell her she has nothing to apologise for. The anxiety is becoming more apparent, I have to speak to her really gently sometimes and offer constant reassurance.

11) Not knowing Jessicas future. I heard the other morning that only 15% of adults with autism end up in employment. I’m guessing that is down to capacity to work rather than job opportunities. I am praying she is in that 15% I want her to live alone and independently. I want her to fall in love, and have children, and live a happy life. I want everything that my other two children will have.

12) The belief that autism is a ‘gift’. Really?! Jessica is a gift, all children are a gift. But I’d like to return the autism, please. It’s somewhat hindering my beautiful child’s development and distorting her understanding of the world

13) I hate myself for having all these feelings, but I am only human and I’m entitled to my own thoughts and the ability to voice them. But they don’t come guilt free. I love my daughter unconditionally, but today, and every so often, I hate autism

asd, autsim, parenting, speical needs

What followed Jessicas diagnosis

Three weeks ago, I received Jessicas Autism Assessment report. I’ve spent the time since then just kind of taking it all in and reading it over a few times. It’s 10 pages long, contains quite a lot of information and each time I read it I seem to pick up on something I hadn’t already.

I met up with the Clinical Psychologist and Autism Specialist nurse, who gave me some time to read through the report, which is quite hard to do when in someone elses presence. The pressure!  Obviously there was no pressure, but it’s a bit like being asked to provide a sample on demand during an anti-natal appointment. Your bladder refuses to cooperate, as does my brain sometimes. Some parts were quite upsetting to read, but I wanted to remain composed and deal with any feelings later on my own.

It’s not easy reading that during the school observation, the psychologist found that Jessica would sit next to, but not interact with other children, or that she doesn’t show any emotions other than excitement. Her ADOS assessment also showed that Jessica would only talk about items or topics she was interested in, and didn’t participate in to-and-fro conversation. I already knew all these things, but it’s different seeing them in print.

The report concluded that Jessica demonstrates a range of autistic traits in the areas of language and communication, reciprocal social interaction and stereotyped behaviours, reaching the threshold for a diagnosis of autism. Along with this, Jessica also has a learning disability.

After a few minutes I started to ask questions, after originally having non. After almost four years of reading up on autism, I kind of felt like a pro. I thought I would just thank them for their help and that would be everything done. But I needed to know how her future looks regarding school. I absolutely love her school and feel like I owe the world to the staff, but there is a little bit of me that remains convinced I could be taking her to the school just down the road myself some day. But the learning disability means that Jessica needs a visual timetable to get through a school day, she needs a quieter environment with minimal distractions to concentrate and visual aids to learn. She learns through seeing pictures rather than hearing words. Her needs may always be too high for a mainstream school. But I do mean it when I say I am absolutely fine with that.

I was also interested to know where Jessica falls on the spectrum. I didn’t really get a definitive answer. I think there is a preference not to classify as children can move about on the spectrum. But from what I could gather I think the general feel is pretty much mild, but almost leading into moderate.

The nurse then stared to talk about Jessica growing up and going through adolescence and how I might need help preparing her for change, and different stages of life. I know all kids need help with that, but more than a neuro-typical child. Something I hadn’t really given any thought to. And about how she is going to need to be taught skills which she doesn’t have or will ever come naturally to her. How to hold a conversation. How to act in social situations. What is and isn’t acceptable behaviour in public as opposed to at home. Just everything. Everything we do and our children do and we take for granted. I’ve pretty much got to manually programme my daughter in a sense. But with the help of support, books and any resources I can get my hands on, I can do it. I’ll do whatever I can to make Jessicas life as fulfilled, enriched and absolutely full of friends, as it should be.

asd, autism, general, parenting, special needs

So today we got a diagnosis

Today came the news I’ve been waiting for since january this year, and anticipated since january 2011. I’ve gone from fear and denial to acceptance and hope.

It was just over a year ago that we decided we wanted an offical diagnosis for Jessica. I know some people feel a diagnosis is a label, I did at first, but it’s an explanation. I want people to understand why Jessica is who she is, using just one word, and I want her to be able to do the same as she gets older.

A diagnosis takes time, and it wasn’t until January this year the process began. The four parts were all done in quick succession. The first part was a meeting with the Child Disability nurse where we talked about Jessicas development, then the second part, the ADOS assessment in school, part three involved the team meeting and talking with teachers, and observations. Part four, a meeting with the psychologist where we discussed Jessicas development, her areas of concern and family history. Everything was done the first week back after half term in february, and I’ve been waiting every day for a phone call to arrange a time to discuss the results. Every time the phone has rang I’ve answered it hoping it was about Jessicas assessment. I said I wouldn’t let the wait get to me, but it has.

The phone call came today. I knew it was the psychologist as soon as I heard a voice. She apologised for not being in touch sooner, as they’d been very busy. She said she would like to arrange a time to come out and discuss the results of Jessicas assessment along with the nurse. We arranged next thursday afternoon. My heart sank as I thought I’m going to have to wait another 9 days to find out some kind of conclusion. I thought about asking her what I could expect to be told, but I knew if she could give me any information over the phone, she would, so decided not to. But, she then went on to explain that she and the Child Disability Nurse will be meeting up with Jessicas pediatrician next week, and they’re going to tell her that Jessica does meet the criteria for a diagnosis of autism. The doctor will then give the official diagnosis.

She then kept talking, but I have no idea what she said, I was taking in that one sentence, the one I’ve waited four years to hear. I think I cut the phone call short by saying ‘ok, see you next thursday at 1.30’, hung up the phone and just stood there. It’s the result I’ve both expected and hoped for. It’s the only diagnosis which explains every aspect of Jessica. If I’d been told she didn’t meet the criteria, I’d have been disappointed. But it’s news you don’t ever really expect to be told, so it’s one of those situations where you can’t possibly predict how you will react.

I have had a few tears. I rang my mum to tell her, then my dad. I knew Andrew would be home in about an hour and didn’t want to have it on his mind driving home, so decided to wait to tell him. He came home, I told him and like me, he expected it but still felt slightly in shock. We told Callum, he gave her a cuddle and even actually asked if I was okay.

I’m not sad, I’m not upset, I’m not worried. I’ve spent too long being all of those things. I’m relieved, I’m content and I feel so incredibly lucky to be her mum. If it wasn’t for Jessica, I wouldn’t not only be writing this, but any blogs at all. I wouldn’t be the strong person I’ve had to become. My life wouldn’t be half as unpredictable and colourful.

So that’s it. My beautiful, smart, funny, clever, intelligent 6-year-old, who didn’t call me ‘Mummy’ till a week before she turned 4, who repeatedly asks the same questions, who is currently OBSESSED with shop names and clothes labels and will only wear clothes from H & M at the minute (not a fashion or brand thing at all, a logo thing), who tires me out with her sometimes 5am rises and extensive energy, who lights up my life like I cannot describe, has autism. And I’m so very proud of her

asd, autism, general, health, parenting, special needs

What April 2nd means to me

For many parents, today is the last day of term with one long weekend followed by two weeks to spend with their children at home. For me, it is that, and so much more.

April 2nd, is World Autism Awareness Day. A day I wasn’t even aware of until two years ago, and a condition I knew nothing about till 4 years ago. Today is about spreading awareness of a condition which affects 700,000 people in the UK, and taking into account their families, touches the lives of 2.7 million people, every single day.

If you’re reading this via Facebook, and you’re one of my friends, I know you’ll know what autism is. I’ve made my families journey with autism public for just over three years now. I’ve done it because I want to normalise a condition which I knew pretty much nothing about, as I’d never been exposed to it. I’ve done it because it helps me cope with the situation. It’s an outlet, it’s therapeutic. I’ve done it because I’m so incredibly proud of my daughter and I want everyone to know that disability does not mean inability.

But for anyone reading this who is unfamiliar with autism, it is a lifelong and disabling condition, which without the right support, can have a profound and often devastating effect upon individuals and their families.

Autism affects how a person communicates with and relates to other people, and makes sense of the world. Autism causes difficulty in three main areas, social communication, social interaction, and social imagination.

For me, it’s important to create awareness as autism can be described as an invisible disability. A child having a meltdown brought on by a variety of factors (light, sound, smell), can easily be mistaken for a ‘naughty’ child. I want my child to be accepted and understood. I want to feel supported, and not judged.

But most of all, I want EVERY parent of a child with autism to feel their child is accepted and understood. I want EVERY parent of a child with autism to feel SUPPORTED, and NOT judged.

autism, general, health, parenting, special needs

Experiencing how it ‘should be’

Our house has been hit with a lingering bug this past week, Jessica suffering the worst.

School transport pulled up outside as usual on wednesday night. I opened the door and was handed a black bin bag containing Jessicas coat, scarf and book bag. Dennis, the driver began to explain she’d been sick on the bus, as a very pale Jessica ran right past me and upstairs to the bathroom. I wasn’t concerned, Emily had been ill today also as was I. don’t really worry when the kids get ill. They pick up and spread germs all the time, it’s part of life. My initial thought was at least we’ll have a quiet night rather than the usual chaos which starts from the second Jessica comes home and continues till bedtime. But, I was wrong. I went upstairs to change her out of her uniform, pick up a blanket and her bun bun, and lie her on the sofa. And there she was, jumping on her bed, as you do minutes after throwing up.

The next day I kept her off school. She seemed fine, but it’s school policy. Although complaining of a sore tummy, thursday was as tiring a day as usual. Both girls fighting. Jessica running up and down stairs, jumping up and down on and climbing on furniture. At this point I was feeling quite convinced Jessica just does not ‘do’ ill. She’ll have the symptoms, and the temperature, but it’s like she remains unaffected, she still functions as normal.

Friday she was fine, but saturday she was quiet. I could tell she was coming down with a cold. I managed to have a shower without having to grab a towel numerous times and run downstairs to break up a fight between her and Emily. We spent the afternoon at the Tim Lamb Centre which we take her too. She sat for about half an hour in the art room painting a picture. Then went into the games room and she sat next to two other girls playing a board game. Emily tried to join in with the other girls, well the best a 3-year-old can, which was taking the counters off the board, but she wanted to be part of the game. Jessica sat near the girls, but playing with lego. She wanted to be with the other girls, but doing her own thing. That was fine. I then took Jessica to the sensory room where she sat next to a water light for about an hour, and we just talked, and sang.

We went shopping, no drama, came home, no drama, and both girls were in bed by 7 and I had very little mess and destruction to tidy up than usual. Sunday morning, Jessica woke up with a temp again, and complained once again of a sore tummy. We did go out just to get her some fresh air, but she said she wanted to go home, so we did and the three of us watched Peppa Pig together.

Monday, although more colourful and happier, I kept her at home. We spent the day playing shops, singing and drawing. Jessica NEVER sits still for more than a few seconds to watch anything, or can hold her attention long enough to engage in any kind of proper conversation. We get fleeting replies to questions, as that’s what most of our conversation is based on. She has to be asked questions, or she will just pretty much narrate what is going on around her.

Today, I kept her off school again. She’s better again, but slightly pale and nothing like her overly energetic self. We took Emily to her little pre-school. I then took Jessica for her breakfast as we discussed yesterday we would do. I was even ready to leave the house earlier than normal for a week day.

We went to a cafe, and we left when I suggested. Not because Jesscia refused to sit down, or because I was sensing animostity from others, but because we had finished, and I knew she wanted to go to the library, which we did, for an hour, with no outbursts, no running up and down the aisles of books. She even prompted me ‘one more minute then we’re going to get Emily’.

When we got home she told me she’d had a lovely morning and that I’m an ‘amazing mummy’. Words to melt anyones heart. We had another enjoyable quiet afternoon. When Jessica is calm, Emily is too.

I’ve had four days enjoying both girls more than ever. Four peaceful days. Four days of how it should be. Watching them both play together. I’ve loved hearing Emily ask Jessica ‘would you like to buy an ice cream’ as she’s stood holding rolled up paper, then asking Jessica for ‘one thousand pounds’ as Jessica says ‘yes please’. I’m loving Jessica asking me questions and answering mine, Jessica singing, Jessica reading, snuggling up and watching a dvd with me and Emily. Just things I would expect are pretty much the norm of a 6-year-old. I can handle the routines and rituals, the embarrassing things she says in the wrong place or at the wrong time, her waking me every couple of hours in the night to tell me that she knows she has to be quiet because Emily is asleep, her new little obsession of only wanting to wear clothes which she has, from a particular shop as she has a new little fascination with labels. It’s the hyperactivity, anxiety and screaming which makes everything hard. It’s like her body is being taken over with too much energy, which takes a full day to burn and she is refuelled while we should still be sleeping, and those three things which I hate right now as they are stopping me from learning more and more about my beautiful girl.