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A day in my life….

It’s 2am, 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 and 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 smack on my head and a pull of my hair. It’s 5.30am. 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 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 into 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 lunchbox. 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 assistants 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 day out.

Exhausted and it’s only 9am. 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, dreading.

At 3pm I make my way back to the school. Her door opens and all the children charge out. Her little face looking 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, 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.

How we helpOur Programmes

For Parents

Early bird teen life programme

Teen Life is a six-session programme for parents/carers of young people aged 10 to 16 years on the autism spectrum.

Programmes are run for up to six families at a time. Each family is allocated three places on the Teen Life programme: two for parents or carers and one for an accompanying professional.

Find out more …

For Parents

Nurture programme: parenting puzzles

The programme is intended to provide adults and children with the understanding, skills and ability to lead emotionally healthy lives, build resilience, empathy, self-esteem and support positive relationships and to inspire positive changes.

The 10-week Nurturing Programme is effective in universal settings and is also used by practitioners to deliver targeted support as part of specialist interventions such as: working with parents in prison, and parents whose children have special needs

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For Parents

Lego based therapy

Lego Based Therapy is a Social development programme for children with ASD and related conditions such as ADHD. It is now used in school settings and is often recommended by professionals as an intervention for children with social communication needs.

We have a 2 week programme to train parents to be able to use Lego Based Therapy at home with their children.

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For Parents

Parent & carer wellbeing programme

Most parents put the needs of their child first.  Parents of children with Additional Needs have even less time and energy to focus on their own physical and mental health & wellbeing.

CBS aim to shine the light on parental mental health and alleviate some of the problems by offering parent led respite activities, specialised counselling and wellbeing workshops, such as, relaxation techniques, yoga and mindfulness addressing stress and anxiety.

Parents’ Guide to the Galaxy – A six week long series of workshops and information sessions to encourage parental self-care and emotional well-being.

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For Parents

Early intervention behaviour programme

This 6-week programme, aimed at parents who have children with behaviour that challenges and have no diagnosis.

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For Parents

The Parent Factor in ADHD

The Parent Factor in ADHD is a 9-week programme for parent carers who have a child diagnosed with ADHD.

The programme starts with a pre-group meeting which allows the group participants to meet with the facilitator. This serves a number of functions, but most importantly it gives parents the opportunity to talk (as much or as little as they wish) about their experiences, including any concerns they may have.

Participants then attend a weekly series of six, two-hour long sessions. Each session has specific aims and is led by a CBS facilitator.

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For Schools and Organisations

Mission Incredible! – Teacher training package

A specialised training package designed to give teachers and teaching assistants key skills and techniques for coping with children with additional needs.

This training package can be tailored to the specific needs of each school.

Schools Programmes are free this year, thanks to external funding. Please contact CBS to discuss your needs. 

For Schools and Organisations

Restorative approach programme – Linking parents and schools

We offer a Restorative Approach Programme, building a bridge between parents with children with additional needs and their schools to support a positive relationship and mutual understanding.

Schools Programmes are free this year, thanks to external funding. Please contact CBS to discuss your needs.