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.

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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.

autism, parenting, special needs, speical needs, Uncategorized

Jessicas ADOS assessment and the next steps

Yesterday morning I went into Jessicas school, where the next part of the autism diagnostic process was to be completed. After a short wait in reception and a brief chat with one of Jessicas teachers, I was then invited into the room in which the assessment would be carried out. I then met the two psychologists who had been busy setting up the room, and the child disability nurse who came out to ask me a series of questions regarding Jessicas development and behaviours, a couple of weeks ago. It was then explained to me that I had to literally just sit on the chair next to the door, and not give Jessica any help, or interact with her at all, unless asked by Jessica. The idea is they want to see how much of the assessment she could do on her own without any help. Turns out she did it all.

Jessica was brought into the assessment room by her teacher, she then looked at me, gave a big smile and shouted ‘Mummy’! And gave me the biggest and longest hug I think she ever has. She then looked around at everyone in the room, then pointed at me telling everyone ‘Look, that’s my mum’. Jessica then noticed the selection of toys on the floor. Amongst the toys was a jack-in-a-box which Jessica played with briefly, some small wooden bricks which she then began to stack up, a book which Jessica read all of (she can’t read the words just yet, she just reads what she sees whilst following each word with her finger), some plastic cutlery, and a car, I’m struggling to remember what else was amongst the toys, but it was easy to see why each one had been selected. I’ve just realised that the car was there to see if she would play with it, or be more interested in spinning the wheels, however, I don’t even think she even picked the car up.

Jessica played with each toy appropriately, without any help, and until she was invited to do the next activity. I was asked if she would play like that at home and I reinforced my answer given during the questionnaire, that Jessica never plays with or shows interest in any toys. If she had those toys on the floor or table at home, she would still be walking along the back of the sofa, doing roly polys and climbing on the furniture.

Jessica was then invited by the psychologist carrying out the assessment, to sit on the chair next to  her. She then said ‘Okay’, got up, walked over and sat down. Jessica was then presented with more toys. I could see that the idea was to now observe her imaginative play skills, aswell as joint attention, and sharing. Jessica was asked if she would like to play with the little wooden dolls, which she did, picking up the miniature plate for ‘dad’ when she was told he was hungry and picking up the tiny baby doll when she was told it was crying, which she then said she would put into bed as it needed some sleep. Some more items were then placed on the table. A plastic cup with a spoon, a small plastic ball, a small square of material and what looked like a box a necklace would be presented in, with the foam padding inside. I was pretty gobsmacked when Jessica then opened the box, saw the foam inside and said that the baby needed a bubble bath and put the baby inside. It didn’t even occur to me that was the idea of the box. She then said she would dry the baby and picked up the small piece of material wrapping the baby inside of it. I didn’t notice the link between the actual wooden dolls toys, and small non related items which were to be incorporated into her pretend play. Again, Jessica doesn’t do any pretend play at home. She has monster high dolls which she wanted for her birthday, but rather than play with them, she carries round in her Monster High bag, along with her Monster High books and pens. She also has a baby doll which she may pick up, give a cuddle to, then throw on the floor. We ended up binning her Hello Kitty kitchen about year after we got it, as she would just dismantle it rather than use it for imaginative play.

Whilst playing with these toys, the psychologist then said ‘Jessica, look’, and pointed to a fluffy toy rabbit on the table opposite. She looked, said what it was and was excited as it then started to move as the nurse controlled it.

The tasks which followed included Jessica being presented with a picture of a beach. She then started to describe what she could see, using verbs such as ‘boy swimming’ ‘playing football’, and adjectives such as  ‘holiday’, and a series of nouns. Jessica was asked if she had ever been on holiday before, which she replied with ‘No’, even though we went away three times last year. But we’ve never been abroad, just for long weekends away in this country, so Jessica in this context was associating a holiday as in somewhere with a beach. Jessica was the given a baby doll, and the psychologist used some play-doh to make a birthday cake. Jessica then put four candles in the cake, began singing happy birthday (without being asked to), cut the cake when asked, but not before she took out the candles, fed the baby, then wiped it’s face. When asked how old the baby was, she said 7.

Jessica then had a snack of grapes and biscuits, and was told to just ask for more if wanted. The psychologist then started blowing some bubbles, which Jessica jumped up and began popping.

At the end of the assessment, I said goodbye to Jessica and the psychologist took her back to her classroom, Jessica leading the way there. I was then told she had done really well, and was asked my thoughts on how it went. I agreed, really well. Jessica had also counted to 40 during the assessment (skipping from 20 to 30). I’ve only heard her count to 10 as she stops at 10 every time we count, refusing to count further. I also said I was very impressed with her role play, although role play is something she has learned through therapy, and it is repetitive rather than spontaneous. I then asked if they could give any thoughts and feedback but was told no, as this assessment is just part of the diagnostic process, which I already know I was just interested to hear if they had a clearer picture of where this will go. But I take it it’s their procedure to not give any results or indication of what the outcome of the assessment was.

The next steps are another questionnaire for me with more in-depth questions of family history and Jessicas development (I’m not sure how much more in-depth can they be from the last questions?!), and Jessicas observations at home, where I expect she will fully cooperated, participate and interact. I came home and did some more research in the ADOS assessment, and reading other parents experiences. I realised there are 4 different Modules, depending on a childs age and ability. Jessica did Module two, the module for children with some speech and phrases. Some parents had feedback and results straight after the assessment, some were sent a letter and score in the post, and some waited upto a year for a diagnosis. I had a look at the criteria and what exactly Jessica would be scored on. My initial feeling was she will fall short of the score needed for an autism diagnosis. Her interaction was brilliant, as was her attention, and eye contact, which made me feel disheartened. But I’m not a psychologist or nurse and they’re trained to look for things I probably never even noticed, so I guess it’s still a waiting game.

 

autism, parenting, special needs

The emotions of being a parent of a child with a disability

When we plan to have children and envisage ourselves as parents, we can only imagine a feeling of happiness as we picture life with our perfectly developing and functioning children. The thought that our child may have a disability, physical or neurological, never enters our mind. Unless of course anything is picked up in utero, we as expectant parents, just sit back and eagerly await the arrival of our little bundle.

And then the big day arrives, the day which we go into labour and give birth to our much-loved and long awaited for baby. Of course, we ALL feel love and happiness for our newborn, but I think we forget there are parents who are then faced with heartache and agony, as their tiny baby is put into the care of a team of doctors and nurses for medical attention, which may just be needed for those first hours, days, weeks, months, or even a lifetime. There are also the parents who have no idea that as their child grows, certain concerning behaviours may emerge, and life then starts to take a completely different path than we anticipated.

As already mentioned, it was two years before we realised that Jessica was developing differently than other children, our main concern being her severe lack of (or non existant) language and communication. As a family, we’ve been on an emotional rollercoaster over the last 4 years. I expect every family living with disbailty of any sort will go on that same journey.

ANXIETY was the first emotion I particularly felt. Andrew had a more laid back approach to Jessicas language delay, which I guess comes down largely to our personalities. I do suffer from anxiety, although I have learned to rationalise and control it. Andrews calm laid back nature, always balances things out a little.

FEAR, WORRY, UPSET – As I spent a LOT of my time on the internet looking for explanations as to why Jessica may not be developing any language skills, I became more and more scared. Especially as I went from typing ‘2 year old can’t talk’ to ‘three year old can’t talk’ into Google, even during the night as my anxiety was keeping me awake. I clicked on page after page and the explanations and advice I found, given to other parents with the same concern,  went from ‘be patient, give him/her time, some children develop at a slower pace than others’, to ‘take him/her to a doctor, they may want to test for autism’.

SHOCK, SADNESS – My immediate feeling after Jessicas very first appointment with a pediatrician who then referred her for a hearing test, concerned Jessica was actually lip-reading. I’d also went to that appointment alone, just me and Jessica naively thinking I would get a straightforward simple explanation and resolution. I left the appointment and rang Andrew to tell him how it went and I remember my head spinning as I spoke.

FRUSTRATION – My main feeling during the time then spent waiting for appointments. Hospital appointments for hearing tests, appointments with speech therapists, the frustration when the speech therapy did not go as I hoped. Not knowing the future. I said a lot in the beginning that I just wanted to know if Jessica would ever talk. I couldn’t handle the thought of not being able to communicate verbally with my daughter. Not knowing how she was feeling, or if anything was bothering her. I didn’t want to think of having only Makaton or sign language as a way of communication, I wanted to hear a voice.

RELIEF, ENCOURAGEMENT – Jessicas first word during speech therapy was ‘bear’, which she would say when prompted as her therapist sang ‘Round and round the garden’. That was the only word she would say for months, and often with weeks inbetween saying it at all. However, this was still no indication or guarantee at all that Jessica would develop language. Relief has been the most consistent emotion I’ve felt over the last year. But i have still experienced strong not so positive emotions amongst that.

ANGER, CONFUSION, DENIAL – I have asked ‘Why us’? ‘Why Jessica’? and I have felt eaten up inside with envy towards other parents. Especiailly when Jessica started nursery. I hated dropping her off and picking her up and seeing the other parents who weren’t faced with the emerging situation our family was. I have blamed myself, was it something which happend during labour? Is it something which could have been prevented? The first time autism was suggested, I catagoraically stated Jessica was not autistic, and was offened at the very suggestion. I would say I felt this mixture of negative emotions for the most part of a year. They have also been the hardest to deal with.

CALMNESS, CONFIDENT, THANKFUL, GREATFUL – The positive emotions I would use to describe my feelings since Jessica started school. Having a statement of special educational needs meant that Jessica could go to whichever school we want her too (as long as the LEA agree it can meet her needs), and by law, the school must provide the exact help and support Jessica requires. We chose the school which the LEA recommended, a specialist school for children with moderate learning difficulties and autism. It is actually part of a mainstream school, which Jessica still experiences being part of. This is without a doubt, the best decision we’ve ever made.

PRIDE, HAPPINESS – Every Star of the Week award Jessica brings home fills me with pride, every assembly, every comment in her home/school diary she brings home each night, and I would not ever go to her schools Christmas Concert they perform each year without a pack of tissues. Jessica is in a class with 7 other children, all boys, making her the only girl. Jessica gets picked up for school every morning in a taxi with two other girls. She brought home a letter one night a couple of weeks ago, from one of the girls mums inviting Jessica for tea. Last Wednesday night, Jessica went straight to her friends house for tea after school, and we went to pick her up at 6.00. I never expected that both me and Andrew would be sat teary eyed in the car as we listened to Jessica tell us how much of a good time she’d had. Jessica has been to a few parties since starting school, but we were worried she would never have a best friend or go to a friends house for tea. Just the usual things we all do growing up. We’re excited that her friend is coming to ours for tea this week.

And to bring everything up to date, thinking about tomorrow, I don’t know how I feel. In the beginning, I would feel anxious the night before an appointment, anticipating what the outcome may be. I’ve become desensitised to that. It is just another appointment. I’ve asked Andrew what he would like the outcome to be from Jessicas assessment. A diagnosis, or no diagnosis. He agrees with me. We would like a diagnosis. We feel it will help us to explain a lot of things to Jessica in the future, such as why we chose the school we did, when she could have gone to the mainstream school which is literally a minutes walk from our house. And help her understand why she has developed in a different way and at a different pace to other children. It’ll help us explain to Jessica who she is. If she doesn’t receive a diagnosis of autism, we’re expecting the alternative explanation to be a ‘learning disability’. Jessica is a visual learner and requires visual aids and prompts to reach her potential, which indicates Jessica does have a learning disability, but it doesn’t explain the behaviours. So if we don’t receive a diagnosis of autism, I’m expecting a level of frustration to emerge again.

autism, parenting, special needs

Knowing the signs of Autism

When I decided to start-up a blog, I knew that I didn’t want to make it all about being an autism parent. I want to be current,  topical, informative and varied. However, next Monday (2nd February), Jessica has her Ados assessment. Having already completed the first part of this assessment two weeks ago at home with the children’s Disability Nurse, where I answered a series of questions regarding family history, Jessicas development and behaviours, the Ados assessment will give a very clear and final indication if Jessica will in fact receive a diagnosis, or not. It’s taken us literally four years from Jessicas first appointment in february 2011 at age 2 years 3 months, to now, age 6 years and 2 months to get to this point. However, this has been by choice as we discussed with Jessica’s consultant at each appointment, how we were still very wary of Jessicas autism traits, but would wait a little bit longer to see how she progresses before deciding whether to go ahead with a formal assessment or not. I should also point out that Jessica is not in need of a diagnosis as such, as she has all the help already in place. But I feel that a diagnosis will answer questions in the future as Jessica grows and maybe herself feels a little different from her peers. I want to explain to her why she may find it hard to interact, or why she may be experiencing sensory overload for example

Anyway, I shall list what we noticed that brought Jessicas struggles to our attention, and also Jessicas autism traits

1) Sensitive to sound – Jessica would cover her ears quite often, particularly when we were out. If an aeroplane went overhead, the sound would mean nothing to me, but would be loud enough to make Jessica cover her ears whilst looking up to the sky. There was also one particular episode of ‘In the Night Garden’, in which Upsy Daisy would shout her name in a high pitched voice. This would make Jessica cover her ears and cry. We didn’t really think anything of both of these behaviour or actions at the time, but looking back they were a definite red flag.

2) Lack of interest in those around her – Jessica not only had very little interest in toys, but she also showed no interest in wanting to intereact with us, other family members, or other children around her. Emily will draw a picture and been keen to show me, or initiate singing nursery rhymes. Jessica did non of this, and she had no interest at all in Emily once she was born. Again, this isn’t something which prompted me to speak to a health visitor, as I was completely unaware of autism at the time.

3) No speech – This was the red flag for us. By the age of 3, Jessica had still not spoken a single word. I had worried about this from before the age of two, but kept telling myself give her time, she’s just a late developer, it will come. I had mentioned it previously to the health visitor, but I just kept giving it time and reading storys on the internet about children who were late talkers and telling myself it was nothing to worry about.

4) Lining things up – not a red flag, but an autism trait. Jessica would line toys up rather than play with them. Cars, blocks, lego, pens, pencils.

5) No interest in toys – as I mentioned earlier, Jessica showed zero interest in playing with any of her toys. When presented with a toy, she would play with it in the wrong way. For example she wouldn’t pretend to wash up or prepare tea in a toy kitchen, but line the cutlery or food items up, or draw all over it.

6) No use of social imagination – Again, regarding toys, Jessica showed no attempt or understanding of pretend play. No dressing up as a doctor or nurses, or being mum to a baby doll.

7) Need for routine. As Jessica grew older, we noticed how governed we were by doing things in a particular order, or to a certain routine. Jessica has gone through phases of wearing the same clothes each day, same pyjamas each night, even refusing to wait until they were dry after washing to wear them. Jessica comes in from school every night, pulls the bobble from her hair and drops it on the floor, goes upstairs and changes out of her uniform, and there is nothing which would get her to break this routine even for one night. I’ve told her I have a surprise for her in the living room to see if she would be intrigued enough to wait to change out of her uniform, but that didn’t entice her.

8) Repeating words, sentences or phrases over and over again. As Jessica began to use speech at around age 5, she would repeat words or sentences again and again. She would find, and still does find particular sentences or words funny enough to say again and again and laugh. Jessia went throught a period of Echolalio, when she would repeat back everything said to her. Rather than give a reply to ‘Hello Jessica, how are you’, she would respond by echoing the sentence back to you.

9) Short attention span – one of the biggest struggles in Jessias earlier days of speech therapy, was figuring out how to get Jessica to hold her attention in an activity long enough. She still flits from activity to activity althouh her attention has improved.

And last of all

10) Hyperactivity – Jessica is on the move from waking up at 6am to going to bed at 7pm. She is full of energy and never sits still or even sits down whilst at home. From doing handstands on the sofa against the wall, to jumping on her bed and running up and down the stairs. She even walks around the room whilst eating her tea.

So there you have it. The red flags of autism and the traits which go with them