Real-life experiences of our parent carers, stories to guide, teach and inspire.

Parent of a child aged 9 diagnosed ADHD and ASD

Finding group….

I was told to attend the CBS group for many years before I could find the confidence to attend. And then you go back, and I was at breaking point with my son and I had seen on their Facebook page that they were running a course in ADHD and I decided to attend as I had nowhere else to turn.

The first time I attended, I sat in a room with people I didn’t know and cried my heart out while explaining what was going on with myself and my son. I found people who truly understood what I was going through on a level that my family and friends just didn’t get, I received advice, help, support and strategies that helped myself and my son massively. To me, this group has been a lifeline, and I don’t know how I would have got through the difficult times I have faced without them.

It’s hard to explain in words just what this group means to me. The advice I have received has covered every issue we have faced. This is a place where I can meet people who feel the same as me and understands me in a way and on a level no one outside this group understands.

My confidence is grown in such a short space of time, I have given a talk to the group about my daily diary and have recently started volunteering for CBS helping with fundraising, this is not something I would have been able to do last year. Since coming to the group, my family’s life has improved greatly due to the help I have received.

Parent of daughter aged 7 undiagnosed

A day in my life….

It’s 2 am, I wake with a jump as she pokes at my face. I’ve only had my eyes shut for 2 hours since the last wake-up. “My tummy is hurting,” she says as she stamps her feet and stiffens her body so I can’t move her. I finally get her back to bed after she has physically protested. I’m desperately trying to keep her quiet, so she doesn’t wake her brother in the bottom bunk.

I wake to a smack on my head and a pull of my hair. It’s 5.30 am. There’s no way I can get her back to bed this time. I don’t know how long she’s been up, but she’s mad. “I can’t get her dress on!” She says as she thrusts her doll in my face. I fumble in the dark with one eye open, trying my best to keep a lid on her emotions. “I’m hungry. My tummy hurts” These are the words I will hear for the next 3 hours.

“What day is it?” The question I dread. My tummy was filled with knots. “It’s Monday,” I say with a forced smile. How will she cope today? She starts to unravel. Circling the floor listing all the things that will go wrong today in school because they happened once before so of course they will happen again today. I calm her down and tell her I will explain it all to the teacher today. I help her to dress in her school uniform, holding her by the arm as she twists and pulls away. She jumps on my lap knees first without any warning, almost winding me and grabs my face hard as she pushes her forehead against mine. “I love you, mummy,” she says excitedly through her gritted teeth. And I know she really really does. She eats her breakfast of Nutella sandwich (crusts cut off) as I prepare her no-crust Nutella sandwich for her lunch box. Now the dreaded time of teeth and hair. You’d think I was trying to force bleach into her mouth and stick pins in her head. That will have to do.

As we walk towards the school gates, she pulls and swings around at my arm, unaware of the cars around. My heart is racing, my eyes are looking everywhere, trying to search out the triggers. My son is excitedly chatting to me about his best friend and asking me question after question. My chest feels tight. My tummy has butterflies. Her hand starts to squeeze mine, so tightly it makes my fingers click. She’s starting to tense and pull away. I frantically try to comfort her and pop her ear defenders on. My son is still blissfully unaware of the situation and demanding I answer the question he’s asked me 5 times, but I didn’t hear. We reach the classroom doors. We say goodbye to my boy, I give him a big kiss and a squeeze, and he kisses me back. I look at her, and she looks vacant, staring at the other children. “Come on then, babe,” I say as cheerily as I can. Still holding her hand, I haven’t let go of it since we got out of the car. She tells me she doesn’t want to go in, she pushes against me. When we get to her door, I am filled with anxiety. I see the look on her teaching assistant’s face. “Here we go again, what is it this time” she’s thinking. I begin to tell her about how my daughter has felt this morning, and I’m greeted with eye rolls and “Come on in now, she’ll be fine” as she ushers her in. My heart breaks as she goes out of sight, looking so lost. The teaching assistant turns to talk to another parent. Not a care for the morning, no, 7 years I have had. The emotional fight I have day in and day out.

Exhausted and it’s only 9 am. I head to work. Worrying about how will she cope today? Will there be any triggers for her today? That’s how my working day is spent…worrying, thinking, and dreading.

At 3 pm, I make my way back to the school. Her door opens and all the children charge out. Her little face looks so blank as she glances around, looking at all the parents. I give her a wave and a smile. Nothing. She walks towards me and pushes her bags into my hand. “TAKE IT” she barks through gritted teeth. “It’s been hurting my hand all day” she cries. You can just see she’s had a tough day holding it together. We get home and its release time. Climbing over the furniture. Raiding the fridge and cupboards. Then she needs me. Just me. I can’t do anything else other than hold her under her blanket. Do I dare suggest a shower? It’s been 3 days, and she needs one, but do I have the strength? My boy needs to read me his schoolbook, but his talking is hurting her ears. She needs the lights off, her eyes are hurting too. All the things I had planned in my head to do after work and school run feel like such a mountain to climb. I need to put a wash load on, but I just feel drained. Now we have hours and hours of “I’m hungry. Mum, I need something to eat.” She hasn’t stopped eating since she got home. There is no more food. I seem to dread the next thing to come. Pyjama time, teeth time…. bedtime.

I spend an hour trying to control her as she runs away, hides from me, cries and screams while I try to dress her and get her into her bunk. Her brother is already asleep on the bottom. Now it’s time to arrange all her special things on her special shelf. Something she must do every night before bed. They must be in the correct place. Finally, after some more fighting, she’s in bed. This is where she melts my heart. Where she tries so hard to show me affection and kiss me and hold me, even though she’s rough, and it hurts me, I’ll take all that love and affection she’s got to give. This is where I feel terrible for all the times throughout the day, I’ve lost my patience at things she just cannot help. This is where I tell her how much I love her and I leave the room, closing the door behind me, feeling defeated yet again.

I know this isn’t the last time I’m going to put her to bed tonight. I know I have another long night ahead of me. I know I have another challenging day tomorrow. Yet I know she’s worth every single second of it. I know we’ll get there, and I know we DO have better days than today, as well as worse days. I know we have days where she laughs so hard her milk comes out of her nose. She has days where she loves us all so so much and shows us over and over again.

Parent of child diagnosed with ASD

A haircut….

It’s fast approaching the Easter holidays here, and I’m not sure what I’m dreading more: being surrounded by copious amounts of chocolate (for some reason it tastes nicer when in egg form) and haircuts. Not for me, I might add – I don’t complain about being sat in a chair and pampered for three hours – but for my boys…

Now, Juan would have his hair cut every other day, with no qualms. Number 3 only needs a shave around his man bun, now and then, but number 2 HATES having a haircut. Having ASD means that being touched in any capacity is unacceptable. Completely and utterly out of the question. Our last trip to the barber was eventful…

Our normal barber was full, and given that my musketeers’ hair grows out, rather than long, I had no option but to try elsewhere. I’d only just picked all the boys up from school, and number 2 was tired and hungry: I wish I’d been able to try again on a day when he wasn’t already narky. We walked into the new barbershop and Juan went first, to show 2 that it was OK. 2, at this point, decided that I was worthy of a call to Child Line for not letting him grow long, greasy, death metal hair and for this, he was going to make me suffer. He sat in the chair and shut down. No eye contact or response when I asked if he was OK or tried to throw him a smile. Mr barber man was relatively quick, trying to (unsuccessfully) strike up some chit-chat with 2. This was never going to happen, but bless him for trying.

He finished his cut and 2 stood up, with a face that said, ‘if I could pick up the pool table in the middle of this shop, it’d be going through that window’. I was still in full-on reassurance mode (making things worse, as it went) and I wanted him to know how smart he looked. ‘Oh, buddy! You look lovely! What do you say?’. Big. Mistake. 🤦🏼‍♀️ I’d asked a brutally honest child how he felt about a haircut I already knew he didn’t want. Even so, ‘I LOOK LIKE A PILE OF WANK!’ was not the answer I’d expected… the barber looked at me, mortified and asked ‘what did he say?!’ at which point, 2 glared in his direction and growled ‘THANK YOU!’, before storming out. Dave* didn’t know whether to piss himself laughing or hug me. Instead, Captain Sensible took over as he pointed to the door closing behind 2 as he shot down the street and shouted, ‘Go! I’ll pay!’ 3 is not quite as sensible as Dave, and some might say he’s like his dad in that he’d laugh if his arse was on fire. So, imagine my joy when he’s barely able to say anything other than ‘pile of wank!’ amidst his fall-down-laughing giggles.

So, if you see us over the break, please don’t comment on 2’s close resemblance to Worzel Gummidge: I’m aware and with this incident as the alternative, I couldn’t care less 🤦🏼‍♀️

*Name changed

Parent of child aged 15 diagnosed with ASD

Our experience of getting a haircut….

In his primary school years, he hated getting his haircut, he knew that if he let it grow, he could hide behind his fringe as if nobody could see him and also, he wouldn’t have to give eye contact, the teacher would ask me to get it cut, say that he was using his long fringe to hide behind, he was under so much anxiety and sensory issues we couldn’t find a solution as quick as that.

Until 1 day I managed to get him to agree to a mobile hairdresser coming to the house, he could feel more comfortable in our own home, sit and play his Xbox to take his mind off his hair being cut, when I knew it was nearly finished, I would put the shower on and his pyjamas ready, so when haircut finished, he could go shower to feel clean again and get rid of that prickly itchy feeling.

Unfortunately a few years later and now high school age, The hairdresser left without warning, back to square 1, how are we going to find another solution, it’s not just as easy to find a new mobile hairdresser as he can be socially awkward especially around new people, OK we came to a compromise, we would try the local hairdressers which is only 2 minutes’ walk from our house, we made an appointment wrote it on the calendar, so he could see and count the days down, we had a very understanding barber who would let him wear his headphones to watch and listen to u YouTube on his mobile phone, this means he doesn’t have to talk to anybody and not listen to all the noises going on, luckily his hair doesn’t take long to shave, as soon as we get home, I have to put the shower on and pyjamas ready, then he wants the cleaner on yes Henry the Hoover with the soft brush on the end to Hoover his neck and head, then he strips off and goes into shower, I know it seems odd, but this is what works for him, so this is how we survive haircuts and this is how it is every 6 to 8 weeks, with the appointment on the same day and time and done exactly the same as a routine.

Parent of child aged 13 diagnosed with ASD

A typical day….

Our day starts at 7.30 not 1 minute less or more, he sits in the same seat on settee and I help put his socks on, apparently they feel more comfortable if I do this for him, they feel weird if he does it, then he goes to the toilet whilst I get the toothbrush and toothpaste ready, I have to brush his teeth (he is nearly 13) but he worries that he doesn’t do it to keep his teeth healthy and I suppose it’s part of our rigid routine, and I’m his comfort zone so mammy does make me feel secure, back to the living room to sit on the same seat of the settee and proceed with the getting dressed with each item being put on in exact the same order as each and every school day, the boxers, the vest, the trousers the trainers (mam has to do the laces as I struggle and can’t do this) then the shirt and jumper, then comb hair and blazer last as the hair bits must not drop on the blazer, then I will be asked over and over is everything OK, does everything look right, can you see my socks, we now have 2 minutes until the taxi is due, so I’m now asked what lessons do I have? I tell him, and he will repeat it over a few times until the taxi comes, finally, taxi here and off he goes, escort has to put the belt on him as he panics and needs to know he is safe, he sits in total silence and doesn’t wave me off, just gives a little head nod.

Taxi arrives at home time, he comes through door and strips off down to his boxers and vest leaving the dirty clothes in exact the same place as he does every school day, gets himself a drink and goes up to h9s bedroom, turns Xbox on straight away, gets on the headset and chatters away to his friends(a few that he in the same unit with at school) not the loudness becomes unbearable with how loud he is, yes he’s having fun  and laughing, but he’s like a different child, as at school he is apparently the quietest child there,5 o’clock comes and will come down to ask what is for food and how long, I always offer 2 choices as any more overwhelms and confuses him, he goes back up to his room, say I told him it would be 30 minutes at exactly that time, he will shout down my food should be ready now, and if not now needs to know why, OK, so he comes down sits in the same seat and eats h9s food in silence (uses knife and fork in opposite hand as apparently that is more appropriate for him), back upstairs he goes, won’t see him for another few hours now until bedtime us approaching, which happens to be the same time that I now sit down to relax and watch TV, he will now come down and talk through the programme to insist on telling me all about his school day as he hasn’t had time before now, but I can always pause the programme as I am really happy that he wants to talk to me and tell he what he has done that school day or even tell me what his friends have done, he rarely does hugs but whilst he’s talking to me, he drapes his legs on me and asks me to scratch them, I guess this is sensory for him and forms a connection, brush teeth time again for him and off to bed he goes, doesn’t sleep very well and 3 hours is an average for him, when he wakes up he makes sure I know by calling me and coming into my room, he will entertain himself by drawing, or YouTube, often shouting to ask if I’m awake till its 7.30 in the morning and the whole routine will start again.

Parent of daughter aged 13, son aged 15 diagnosed with ASD & ADHD

A not unusual day in the life….

The day starts at 6.30 when my alarm goes off.  Get up, come down, sort breakfasts – a cup of tea and concerta for child no 1, blueberry muffin and hot chocolate for child number 2. Same every day.  Routine, consistency, sameness.

Breakfasts are delivered to their rooms.  No child is allowed out of their room until morning grumps have receded. Neither is a morning person, particularly child no 1 until the medication kicks in.

Both get dressed in their rooms before the bathroom argument commences.

Sock and pants combo tried and tested for son – Peacocks pants, Sock Shop bamboo socks.  Generally, assume 10 minutes per sock as they must be just so … clothes laid out in advance. Shoes can be a trial – DCs only, please.

Daughter will dress herself, having been prompted.  And then reminded … but carefully, not forgetting her demand avoidance so subtlety required.  Lots of prompting and walking away.  Lots of smiling through gritted teeth.

Then we have the hair and teeth performance.  Can be hit-and-miss.  Son takes his toothbrush and toothpaste which he keeps in his room – the only toothpaste he will use – and goes to clean his teeth.  In the meantime, I do her hair.  No brushes allowed – neighbours might think someone was being murdered!  Just lots of conditioner and water spray and hope!   No slides, bobbles etc as can’t tolerate them.  Thankfully, the son doesn’t have long hair.

Bags packed and sorted and left by the front door for them to collect on their way to the bus.

And they’re gone.

Morning spent on the phone trying to sort out various cock-ups made by professionals.  Who has time to work?  And a visit to school to go over arrangements for son.

Mid-afternoon- phone call from school.  Daughter having a wobbler.  Currently, at point 3 on anxiety/behaviour scale and heading towards stage 4.  Teacher not in school, daughter struggles with social hierarchies so doesn’t always understand her position in relation to LSAs.  She’s higher up the scale than they are … she thinks.  Combined with PDA, careful handling required.  ‘Will you speak to her please?’  Currently, cracking knuckles, giving off death stares, upsetting other pupils, scratching arms and just generally being difficult.  Spoke to her, brought her back down, tears flowed, apologies proffered and accepted and school bus now able to leave.

McDonald’s as too knackered to cook the usual chicken fillet and chips.

And the evening ritual begins….

Shower reminders start at 7pm.  Two hours later, he gets in the shower.  Changes into his PJs of choice – Matalan only please.  Then it’s pizza time as his meds have worn off, and he’s starving.

While his pizza cooking, it’s her bedtime.  Demand avoidance strategies aplenty … suddenly she absolutely must tell me everything about her day in minute detail, a blow-by-blow, minute by minute account.  Just to avoid bed.  Well practised routine.  Subtly ignored and bedtime instruction repeated.  After much faffing, she goes to bed.  And sometimes stays there!

Following pizza, it’s his bedtime … which can take 2 hours. Melatonin administered, which helps. We play hunt the mobile, then the Hokey Cokey bed game … in and out and so on.

3 to 4 hours after first telling him to shower, he’ll go to bed.

And breathe….

Parent of daughter aged 6 diagnosed with ASD

A day in the life of autism….

I’m not ready.

It’s time to wake up, I lay in bed waiting for mammy or daddy to come with my warm milk. I love this part of the day, I like to bounce on my bed and scream really loudly to wake everyone up, including my big brother.

My mammy lets me rest in bed until I’m ready to get up but sometimes, without warning, she brings me downstairs and I see my school clothes it’s that day again. Why doesn’t she listen to me, I’m not ready yet. I’m not ready to get dressed, my brother does it with no problem but me I can’t help it, my frustration gets the better of me. The floor, the wall or my mummy is the 1st place I can reach out to headbutt over and over.

Please listen, mammy, I’m not ready to go yet.

I can see the stress on her face, but she keeps calm, kisses me and tells me good boy you’ve got dressed.

My Shoes go on. GO GO she says, but I’m not ready. Why is she rushing me? I love the car ride and the schoolyard. Oh, how I love to play in the mud, I can see people looking at me while I post stones down the drain. Why are you not doing it?? Stop looking, come and play.

That bell rings everyone rushes, NO NO not now mammy I’m not ready.

In I go she leaves me in this bright room full of noise, but the bubbles calm me down

Time to go home. I’m not ready, that was fun, but mammy is waiting.

She takes me home I don’t want to go home I want to stay out, but she doesn’t understand me, maybe if I throw myself on the floor even headbutt again, she will understand.

I’m not ready, I want to play.

It’s getting darker, I know it’s time for bed, but I’m not ready

Mammy and daddy lay with me sing songs.

But I’m not ready, I bounce scream laugh.

Why don’t they understand I’m not ready yet?

Parent of child aged 9 diagnosed with ASD & ADHD

And we start again….

After a typical night of not being able to sleep, anxiety being through the roof, I feel sick, my belly hurts, I don’t like the dark, nobody likes me, wondering the house for hours on end, can you hold me tight, squeeze me tighter to keep me safe he finally gives in and is sleeping more realistically napping 36 minutes and he’s up.  Then we start the day.

I’m not having a shower you can’t make me, the bathroom is too cold the water is too hot, the towel is too prickly, the water hurts my head… crying inconsolably, out and done where did those 30 minutes go.

Breakfast before medication, 2 slices of white toast with no crusts bread, no you can’t cut the crust off it’s not the same. Glass of strawberry milk to keep me calm.

Come on time to get dressed for school.  Boom 💥 here we go… I’m not going I hate school, you hate me, it’s not fair!!! Aww, look at the squirrel in the tree.  Where, where.  Aww, I love the squirrel don’t I mam?  Let’s get your pants on, not pants oddballs boxers mam.  Then clothes in the same order every day, t-shirt, jacket, joggers, left sock, right sock.   Here we go, the damn socks get us every day.  As he’s trying to yank the socks off, I hate socks they hurt, throwing himself around the room, while I’m trying to get the trainers on.

Oldest sister comes down, he gives her a hug they have a game of who can take their medication first.  Then the middle sister comes down and he gives the death stare.  He starts screaming he can hear her breathing from the other room, and then she opens her mouth to ask a question and boom we are off again.  She deliberately winds him up by touching him and coughing in his direction, he’s convinced she’s contaminated him and must wash himself where she’s touched him, yes after the 30-minute explosion of not wanting to wash.

Off in the car to drive to school.

Drop girls off to comp and onto juniors.  Car journey is fine, he’s talking about YouTube and things I have no idea what he’s talking about, but we get there with little issue until he sees the school.

I’m not going, please don’t make me.  I get out of the car he locks the car from the inside, I unlock the car he re-locks it.  I unlock it and pull the handle and the door is open.  He’s squirmed himself into a ball in the footwell of the car, and with a bit of manoeuvring he’s on the pavement (in a heap) but we are out of the car.   We guide each other across the road hand in hand whilst his face looks like you are leading him to the gallows, we get to the bottom gate he’s heaving and makes himself sick.  We slowly proceeded to the reception door, we chat about anything and everything until we make it to the door.

I get my pen out of my bag and put a cross on his left hand under his third finger, I put a cross on my left hand under my second finger, and we high-five each other to charge up our crosses when he feels anxious or stressed, he touches his cross to get a hug from me to get himself through the school day.

His teacher arrives at the door and takes him into the school building with his eyes full of tears and a ghostly look on his face, I see him pressing his cross on his hands until he goes through the door into the hall.  Then the wait begins, waiting for the phone call from the school.

This is a morning in our life.

Donna

I am a co-founder of Behaviour Support Hub. In 2014, I attended an 8-week workshop centred on challenging behaviour. I was at my lowest point, I had just begun a carer break due to my son’s complex needs and challenges at the time and had come straight from a GP appointment where I was put on anti-depressants.

During the 8-week programme, I made friends with Claire (co-founder) and we decided to start a support group in RCT. 5 years later, I look back and think of the crisis point I was at and wonder how we as a family got through it. Over the years, my confidence has grown and enabled us to help hundreds of other parent carers in similar situations.

Claire

I am a co-founder of Behaviour Support Hub. My son had recently been diagnosed with ADHD after a 5-year fight. I didn’t know what the process was, had no one to talk to, and felt overwhelmed as the doctor said he was putting my son on medication, which I knew nothing about. I was not going to do this without finding people to talk to who had real-life experience with this.

There was nothing in my area but did find a 6-week course in Aberdare where I met others with children on medication, through this and founding the Behaviour Support Hub I learned a lot and my knowledge has increased massively. I use my knowledge to help the hundreds of others we support through the Behaviour Support Hub.

Sarah

Sarah’s daughter was diagnosed with multiple conditions and displayed very challenging behaviour, including violence. Sarah was pregnant and in the process of divorce due to domestic violence, she had also experienced previous trauma within her family. Needless to say, Sarah was in a very bad place, suffering from stress and anxiety and having no confidence when she walked into a group support meeting for the first time.

After much nurturing, advice, training, peer support and friendship, Sarah became a committee member and is now a director under our new status. She has been successful in securing 3 grants for Behaviour Support Hub and is a great support to her peers. She has the confidence to lecture at the University of South Wales and continues to be a great asset to the Behaviour Support Hub.

Ceri

Ceri has dipped in and out of the Behaviour Support Hub over the years because she suffers with her own mental health. After many years of fighting and with Behaviour Support Hub’s help and support, Ceri’s daughter is finally on the path to diagnosis. Ceri attended our Lego Based Therapy programme and made friends. This has given her the confidence to volunteer for the Behaviour Support Hub, managing the lending library.

Jade

Jade has been a member of the Behaviour Support Hub Facebook group for some time. She has made contact with us a couple of times over the years but was just too anxious to attend a group. After much encouragement, Jade signed up for our ADHD programme. She was so nervous and tearful for the first couple of weeks, but over time you could see her coming out of her shell, with her confidence growing week after week.

By the end of the course, she stated she has used lots of strategies we talked about and that it has made her family a happy one again. She has since actually done a talk on the importance of keeping a diary for evidence in front of 15 other parents whom she had never met in one of our group support meetings. Jade is now a valued volunteer for the Behaviour Support Hub.

Laura

We first met Laura at one of our support group meetings. She walked in low confidence, tearful and broken, she was ready to put her child into care. After much support and advice from members of the Behaviour Support Hub community, Laura has been very proactive and after many battles, she and her family have come out the other side.

Laura has become an integral part of the Behaviour Support Hub and now uses her skills and knowledge to help her peers, both in the support group meetings and in our online support group. She also gives a few hours a week to help with admin. Laura often says that the Behaviour Support Hub has saved her life.