WARRIOR MUM - JUSTINE BAILEY'S JOURNEY

Teenage son with autism. SEN. 

Since this series began I've featured several Mums of young children diagnosed with some form of autism. Today Justine Bailey from the North West of England is going to tell us about life with her teenage son Robert, who has high functioning autism and ADHD. 

Hopefully Justine's story will inspire other parents who are following on the long bureaucratic road behind her.....I must warn you she is hilarious....

Justine's Journey

I was a mother bear possessed at the beginning! I was not going to let this beat us. I was going to fight, scream and get results whatever it took. What I didn’t do too well was the bereavement, grieving for the child I could have had and all the emotions that are tied up in that one word. That train crash happened sometime later.

The Three Musketeers

 

My childhood was very complex! In fact it’s taken years of counselling to be able to talk about it.

I was born in Margate Queen Elizabeth, The Queen Mother Hospital in Kent quite some time ago. Somewhere between 3 and 4 years-old my parents separated. I can safely say it was a difficult marriage towards the end.
I have glimmers of happy times but they are few and far between. I remember the night we left my father really clearly; creeping out in the middle of a cold night, me, mum and baby sister. We walked and walked and the only bit I remember with any clarity is walking along the sea front. I believe we were heading for the train station. A taxi driver pulled over to make sure we were OK. I’m sure it must have been an unusual sight in the dead of night, a woman, a toddler, a babe in arms and a suitcase.

Me

I was too young to know the ins and outs of it all. I have some memories of relative’s houses we stayed at and lots of moving about. The significant chapter though, when everything changed for me, was a trip to see my Father and Grandparents (who I adored). It was only supposed to be for a week but they kept me with them and I never returned to live with my Mother and my sister, not as a young child anyhow. 

My Father refused to let me go back to my mother and no amount of intervention changed the situation. So there I stayed. A very messy divorce and custody case ensued - one in which the Judge decided in the interests of the older child (me) I should remain with my Father! I would love to meet that man today. I would have a few choice words to say to him and the Social Worker!   

Gran, Great-Gran and me

I could write a book and there would still not be enough pages to capture the unhappiness, despair, resilience and hope I felt. I have carried that 4 year-old child with me my whole life. It’s not easy letting her go.

Don’t think it was all doom and gloom. There were enjoyable moments but it’s a struggle to find them. I loved to sing and dance. Some of my great memories were putting on shows with my friends, entering talent competitions and just generally larking around showbiz style! Those were happy days.

Things changed again for me when I was 15 and my younger sister miraculously re-appeared in my life. She'd rooted in our Mother's attic and discovered that she had an older sister (me) and another Dad. Her relentless determination to meet us gave me an opportunity of ‘escape’ back to my mother's. Unfortunately my younger sister is no longer with us but I have so much to thank her for.

With that all said everything that defines me now as an adult stemmed from that childhood. All the decisions and choices I make now come from that childhood and the way I want to be as a human being come from that childhood. I wouldn’t change the past even if I could.

What was your first job after leaving school?

When I moved to the North I was in the middle of my CSE’s but I did manage to do most of them apart from English before I left. I had dreams of becoming a nurse. My Mum was really good at getting organised and within months I was enrolled on a Pre-nursing course at the local college. I completed the first year and got my O’ levels including English, which I was quite chuffed about. Towards the end however, I became somewhat disillusioned by the length of time it would take to become a fully fledged nurse so I opted out. I had already done two years typing at school so I signed up to a local YTS scheme. I quite liked the idea of earning money and started working for a freight forwarding company. 
I remember watching the 80’s Diane Keaton film ‘Baby Boom’ and thinking I quite like the idea of being a ‘go-getter’ in the business world. I spent the rest of my working life doing just that; working up the administration management ladder. The fact I now use this in a voluntary capacity is fabulous, I get so much more pleasure from doing it for free!

Tell us about how you met your husband? 
 I met my husband Jonathan through his friend who just happened to be a colleague at the freight forwarding company I worked for.

He's mine. All mine....

 I was always complaining that I never had a boyfriend. It had only been a couple of years from moving to the north so I hadn’t really made too many friends. I was still quite suspicious of people and if I’m honest didn’t trust too many people either. 
I was trying desperately to re-invent myself. Why then did I agree to a blind date? Fate only knows! 

Our wedding day

I remember checking him out when he came to pick my colleague up and popping my head between the window blinds hoping he didn’t see me and then giggling like a school girl with another secretary. It seems an age now because we have been together over 27 years. We’ve had our ups and downs throughout but we still keep bouncing back.

John was different to all the other guy’s I had met and that’s what drew me to him. He was kind, slightly aloof, quirky, solid and dependable. I’d put him through the ringer a few times just to see if he would walk but no he stayed put! 

You have a son and a daughter?

Elizabeth is simply gorgeous! She is at University studying Fashion Promotion and Styling and just has this ornate way of doing things. I love her creativity and expression.

She is fantastic at photography and I claim that side of her personality comes from me! When she was younger we used to go out shopping and ‘do brunch’ in Selfridges. I suppose I wanted her to experience everything I hadn’t as a child so to some degree she was indulged. When her brother came along we did carry on doing those things. It was really important for her we had that time together. Regrettably this did change though when it became clear that Robert was struggling. He seemed to take so much of my time and she was becoming an independent teen so those days were far and few between.
She treats him in the same way any neuro-typical sibling relationship would be. She doesn't see his autism as him being different just a quirkiness that makes him Robert.

Robert is the main man. I so wanted a little boy. When I found out I was having one, I just went blue crazy. Oh I had so many dreams for him. Along he came and such a delightful baby, and so good at sleeping - didn’t really cry very much. I felt blessed.  

When did you start to be concerned about Robert's development?
It all started with little things first, baby asthma, baby eczema and an allergy to cow’s milk... he then started to struggle developmentally with his speech. I was still working while all this was happening and the guilt was unbearable. A lovely SLT decided that at 26 months Robert wasn’t really that far behind his peers in speech and that it was probably because he was a boy and lazy! Never mind the fact he couldn’t ask for even the basics like juice or biscuit, and the words Mum and Dad didn’t seem to have an ending. The only reason he could say ASDA was because of repetition and he loved the advert. Move on 12 months and I’ve given up work and Robert is in mainstream nursery having been placed by them on their SEN list within his first 6 months!  This was the start of a very long journey for us.   

What age was Robert diagnosed with Asperger's?
By the time Robert was six we had an Asperger’s diagnosis with a specific learning difficulty – Dyslexia and by the time he was nine we had added ADHD to the list.

I was a mother bear possessed at the beginning! I was not going to let this beat us. I was going to fight, scream and get results whatever it took. What I didn’t do too well was the bereavement, grieving for the child I could have had and all the emotions that are tied up in that one word. That train crash happened sometime later.
It wasn’t until we found out about our son’s autism diagnosis that I realised Johnathan could be in that camp too! It answered so many questions within our relationship; how he dealt with social interaction and so many other awkward situations, his obsession with having enough money and not being in any kind of debt, which could be completely irrational sometimes. Other people just couldn’t understand why we were still together! I knew somewhere there would be answers which I found when Autism came crashing headlong into our lives.

How did the school respond?

Robert attended mainstream school and was on school action during nursery and school action plus from Reception until his Statement of Education issued 2005.  During this interim period before statutory assessment Robert was such a handful that a TA, who was already supporting a child with statement in the class, helped him too. Personally we were not happy with this arrangement; apart from taking up time from another child we felt they were using it as an excuse not to fully address Roberts’s needs. I was told by school that the only way I could possibly 'speed this up' was to put in a parental request. I had no idea where to start and was really left to my own devices. No clear signposting or direction given at all. School agreed to support the request but to be quite honest I don't think they really wanted to engage with actual 'doing' bit! I wanted everyone singing from the same hymn sheet so to ensure this was going to happen I knew I would have to take the lead on this. Scary is an understatement, I knew my sons education and life depended on me making the right choices. Many professionals came to 'make observations' of Robert and had plenty to say about him but nobody was actually making a decision. I had really good dialogue with school; I think having an older child in the school helped as relationships with staff had already been established. I was starting to get slightly paranoid being called in after school almost every day. I just knew what was coming when the door opened and the hand beckoned! I think I spent years mastering the art of rolling my eyes! During my search I stumbled across the local Parent Partnership Manager, she was a god send and I would strongly recommend to any parents in the process to seek out their local Parent Partnership Officer. She really helped us when we had to appeal against the decision NOT to assess, and we managed to turn it around.  The whole process was about us leading the way, pushing, and basically getting on their nerves to get results. It was physically tiring to say the least but Jonathan and I decided that we wanted Robert to experience everything that Elizabeth had; we wanted to give him chances like all the other children were given. We were quite prepared to do absolutely anything to give him those opportunities. Someone once told me to never wrap him up in cotton wool the world will never be that fluffy! I've always stuck by that. If I don't let him dip his toe into the sea of life how will he know what it feels like!

Food fads in teenagers are bad enough but around your dinner table they're slightly more challenging, aren't they?

Food and the art of eating it has always been a contentious issue in our house, long before the children came along. Before I had my epiphany about my hubby and his undiagnosed Asperger's, I used to think his attitude about food was incredibly unreasonable at times, spoilt, snooty and downright stubborn and when I presented him with a home cooked spaghetti bolognese and he would only eat the bol, I really did become quite paranoid. He would claim that the pasta was like eating slugs all slimy and I often thought this was quite simply an exaggeration. So many times he used to remove himself from the dining table because the noise of crunchy carrots was like someone running nails down blackboard, or the over dramatic outbursts at the prospect of crisp packet rustlings whilst watching films. The rigidity and inability to compromise was so frustrating to me and a dispute would go on for days. I had been brought up with the attitude you eat whatever was put on your plate or go hungry! I wasn't very sympathetic! That was until I had children!

Easy job with my daughter, she would try anything, hardly any resistance and loved veg! I became quite complacent when Robert came along, that was until I stopped breastfeeding and tried to bottle feed him. Ewww icky baby! Projectile everything... and I mean everything, everywhere... I didn't know one small baby could hold so much. He must have been holding onto more than his own body weight....Poor mite, he suffered dreadfully with eczema and asthma, and ended up only tolerating baby soya milk. By the time he had reached solids and beyond we had a limited palate of taste - weetabix or ready brek, chicken nuggets, loved the taste of fromage frais though we had to be careful not too many, raw carrots if we were lucky, bread and butter, sultanas (they were 'sweets') and if we were in the mood mashed potato. Over time we have added to our list but we are not experimental and have been influenced by hubby's own food issues.  

Robert's sensory issues include food smells - that’s tricky to deal with when your 30,000 ft in an aeroplane and he's screaming he wants to get off!  Robert can't abide anybody eating in close proximity so eats on his own even on Xmas day too! We don't seem to have an 'off' button either so the consumption of a treat, biscuits say, can go on until we have eaten the entire packet in one sitting!  Quite recently I entered the dark hole that is Robert's room only to find the empty packet 500g packet of sultanas hidden under his pillow. I'd only bought them the day before! I have tried to ask him why he does it but he gets agitated with me, so I've just accepted it's one of his 'things' and I will just have to watch him carefully.

Robert's medication for ADHD doesn't help; it suppresses appetite, so when it's worn off he's got the munchies. I cook most meals from scratch because I'm fully aware of the necessity of five a day, but it’s tricky when you have a child who has so many issues with food.  Until you start to really think about it, you don't pay much attention to how much these issues control our lives. 

Father and son don't seem to have a food clock either, so if left to their own devices, well quite frankly, they don't eat! Our meals out depend on whether their menu contains cheese burgers! Or how close the tables are! 

So as Robert moves into adulthood I take a long hard look at my husband and our foodie past, because within it is my son's foodie future. Can I change it, not likely, but I've learnt lessons, ways of coping and dealing with the anxiety, a life of strategies and hope, hope that at some point repetition will pay off and he can remember to eat breakfast before 10!

You've had a lot of involvement with your local SEN Parents Forum, has the contact with other parents helped? 
In my quest for SEN knowledge and a keen interest in meeting other parents locally, I joined the Parents Forum three years ago. Initially, I went along just to find out what was going on in our local authority as most of you are familiar with local authorities REALLY don't like SEN parents getting to know too much! Crikey, if we knew too much we might see more clearly their short comings!  Through the meetings I became aware that I did have more to contribute than I first thought.  I'd spent years trapped in this emotional bubble, and trying to find that even keel, trying desperately to balance that see-saw of our life, that I lost sight of who I was and who I had worked hard to be. What I found confusing too was the 'who I had worked hard to be' because realising that who you want to be is an ever evolving situation can be unnerving, a little bit scary and I was treading uncharted territory. Could I possibly have anything to give or share? Do you know, and I can say this now, YES I DO!

I'm really passionate about SEN parents and their capacity as an entity, a united voice to influence change. I've participated as a Parent Rep on local authority task and finish groups, third party steering groups and parent led visioning events. I started off being very conservative and reserved, taking a much secure position of just nodding and listening. I was struggling inside to have that inner confidence that  
1. Had I anything relevant to say?  
2. That I would be heard.   
Stepping over that line came as a bit of a shock to me. I'd had a really crappy week with Robert's anxiety and was truly fed up with the attitude of some people, so when asked whether parents might engage with a new process I just let rip! Not in a nowty way, or angry outburst kind of way... I merely pointed out quite honestly and calmly the impact of continual assessments, the tiresomeness of repeating your child's history to half a dozen practitioners and the endless filling out of forms, etc, etc. 

I tried to convey what it's truly like on the front line of SEN parents, warts and all! Letting them know we don't what pity, we want answers. We want compromises. We want choices and most of all we want respect and a voice in the decision making of our children's futures!  Shocked! You bet I was, more so because they all listened! I wouldn't say now I have a Rottweiler reputation per sé but I don't hold back and will ask squirmy questions. Parents want to be able to make informed choices and that's not too much to ask!

 


So now I just love these sessions at the local parents forum. They get you fired up, enthused and above all made me realise that goals are attainable...  

Oh, and did I mention that three weeks ago I was voted Chair Person? And to think I started off as a wall flower....

 
Justine, thanks so much for sharing your story. I'd like to finish with your two blog posts. After I read them the words school and egg shells sprang to mind. It must be horrendous for parents who have other children going off to school in the mornings and have to spread themselves so thin. There are so many school-refusal kids it seems like a nightmare scenario always having to be one step ahead to prevent anxiety and meltdowns. I expect many of them will relate to this...

Hey Ho! Hey Ho! It's Off To School We Go....The dark cloud had finally immersed our house this morning! I feel I should be playing some dum dum dahhh music in the background. This year there was no new bag, no new shoes, no new pencil case or pens. In fact the blazer became such a contentious issue; well quite frankly I just threw my arms up in the air and accepted defeat! Well not completely! Like most mums and most mums with children on the spectrum, I try to be two steps sorry two feet ahead. I cope by having backups, backups that nobody else knows about, those secret little draws or hidey holes stacked with contingencies and a mind of solutions and resources. It fits in with my strategy and allows me that indulgence of taking things up to the wire - Meltdown Management!  I laugh and tell people I live by the seat of my pants, which is partly true. My time keeping is atrocious unless I have Johnathan and Robert with me, (where to start with that one it is a post in its self!).  I rebel you see, not often it’s just the teenager in me!

So there I am early this morning washing out pencil shavings out of the bottom of old case, decantering last terms books from rucksack and frantically polishing up a well worn pair of school shoes in silence. Re-pressed the trousers, shirt and tie - check. Clothes in the right order - check. Shoes at the bottom of stairs - check. Blazer no more said about that - check. OK let's go.

I'm mindful about Robert's anxiety, even more so this year because he has been so vocal in expressing it! His school have been really good supporting him. They have spent lots of time talking about social and emotional issues, helping him develop his own strategies to manage these aspects of his life in particular whilst at school and delving into the world of social interaction from which he will recoil. So I was confident if I made the call and spoke to the Learning Support team, between us we could set about lessening the impact with some discussion and reinforcing positive messages of support. Call - check.

So engrossed with the uniform debacle, forgot all about the fact that Robert had missed the last two days of the summer term because he had an emergency visit to hospital. Now was this a factor in the anxiety? I mean we didn't fully complete the school term, didn't get to say those goodbyes and the reminders that come with closure of an academic year. SIX WEEKS ON? Surely not. I know my boy can hold onto 'botherings' but this one is going to be a record. The ability to be consumed by irritations, and produced hours and days later is a key skill he developed quite early on. One in which I usually see coming! Patterns of behaviour don't generally change, plus I know my son! School, being fantastic again, have suggested they get his TA to have a chat with him and will try to discuss how going to hospital made him feel. I thought "Good Luck!" That old chestnut had been and gone, but there was the off chance he may share the experience! What they're likely to get is a grunt!

I try not to bellow up the stairs but for a split second I forget.

 "C'mon lazy bones up you get, It's school time!" .....Ooops

There's clonking and banging, and shuffling of feet, then bang, bang, thud, bang, thud....he presents himself with a blanket wrapped round his head.

"Where's me breakfast?" I point in the direction of a breakfast bowl, glass of orange juice and medication carefully placed in a line. So things just never change and the order in which we receive our breakfast is one, the order in which we put our clothes on and the order in which we scrub up in the bathroom are the others.  

Reassuringly I let Robert know about my conversation with school, to which I get a grunt! I pass on the information about where he goes, what time and how the timetable will look today, I get a grunt!  We manage to not pace the hall but I can see the anxiety is taking its toll, and what he really wants me to do is to get in the car and arrive half an hour before he needs to be.

We don't talk on the drive there. I pull up and Robert grabs his bag, gets out and disappears in the sea of bobbing heads. His anxiety may have lifted slightly but mine has just increased. And did he have a good day...no idea he doesn't want to talk about I just get a grunt!

Hey Ho No. 2 We Are NOT Going To School... Boy what a difference a day makes! My last post was all about the first day back and I seriously thought that we would at least get to the end of the week until our first blip! OMGosh! Smack me in the face with a wet fish, twizzle me round and kick my derriere! It transpires we couldn't get past the second day without a monumental, rip-roaring, completely lose the plot outburst. Robert saved this one just for me when I picked him up from school yesterday.  

It's moments like these that the complexities of having high functioning autism and ADHD are brought home, and I am reminded of the internal war he suffers. Initially we were told Robert had Semantic Pragmatic Disorder and I scoured the internet to find out as much information. I was like a dog with a bone! I had to do something, didn't know what, but something. My emotions were trying to creep out of the suitcase, and the more I researched the more power I had to push them back in there. In my mind I was charging right up to the gate, hammering on it, slapping my chest then gesturing with my hands "C'mon bring it on!" just like the gangster films. If I'd known then what I know now I would have saved that one for later. I used to sit in the dark with only the light of the computer screen illuminating my tear sodden face, because the more I read the more I realised that this wasn't just a blip in our speech and language development, whatever it was, it was going to be life-changing. You all probably wondering where Johnathan is? I'm sure this will resonate with some of you out there, the bucket of sand was more inviting! I knew my journey for knowledge or anything else relating to our children to be honest was going to be a solitary one. What I didn't realise was how close my son and husband's little quirkisms were and how by learning more about Robert did I learn to understand my husband.

Within 2 years we had gone through Semantic Pragmatic Disorder, Autistic Spectrum Disorder, and then to Asperger's, and our specific learning difficulty - Dyslexia thrown in for good measure! By the time Robert was 9 yrs old we managed to add ADHD and the diagnosing Consultant decided because Robert had developmental delay in speech it was not Asperger's but High Functioning Autism. Confusing to say the least but my dog and bone attitude meant that the acquisition of information at the time was top priority. I had to get my head round it all so I could help Robert. 

Not that I was much help yesterday. The incident was simple - last lesson of the day, one child winding up Robert, questioning about friendship with girl (who I might add has been one of two friends he has had since the beginning of secondary school that 'get him'), Robert does not want to answer (because you just don't!), pick, pick, pick throw a piece of lego at him and BOOM! Mum arrives and we start.......we go on about how it's always him they pick on, nobody listens, it's not fair, nobody punishes other people's bad behaviour, he always gets the blame, and then for the real cruncher, 

"It's all you and Dad's fault I have this autism and ADHD. You're the ones who have given me this cell. ADHD won't let my brain calm down" and "Autism and ADHD stop me from fighting my own battles".....and we went on, and on, and on...  

I try the calm approach, trying to reassure, trying to remind him about discussion we had about other people and how they treat us, and that some children find that once they get a reaction from you, feel that they can do it time and time again but more importantly, how do we control the situation when this happens....I pulled out everything from my mummy armoury....Could I comfort my boy not a cat in hells chance. 

Click click click on his ipad on one of our many drives

 I was driving while this was happening, heading for the motorway for a little diversion, I hoped it would work because I was running out of ideas! Robert was firmly told that the conversation would have to stop because I was driving and I couldn't concentrate on his issues and drive at the same time I would have an accident.  Ahhh silence!! The rule card played off.  

I took him to a shop, many will say not a bright move because we don't do supermarkets, but it worked. We bought our items, we grabbed a coke and some fries, went to get in the car and this young man walking out with me says

"Mum, I think I've calmed down now. It's my ADHD that makes me do that. I think my outburst was because it was the end of the day and my tablet had worn off."

I found myself having a moment... my goodness I never thought the day would arrive when my boy would be able to make a complex analysis of his own behaviour and attribute it to his condition. 
 My word Robert has started his journey into transition..

 

Now Robert is a bright, caring and sometimes surprising young teen. We have days that are not so good, some that are different and some days that are more autistic than ADHD. We are sailing headlong into adulthood transition which is challenging to say the least and if I had known back at the beginning of our journey what I do now I would have started my blog  sooner.

Saying that you can only start something when you are in the right place and we’ve come a long way to be in that right place, documenting it seemed the obvious next step.

I try to write about Robert with humour, sense of hope and positivity. I hope I achieve that. In our house there is no room for negativity we don’t have enough time!

To contact Justine

Twitter @jb200908

BLOG Adventures of an Autynary Mum


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