The realities of being the only caregiver for children with special needs, including round-the-clock supervision and "respite" hours spent cleaning her home, have been shared by a tired mother from Birmingham. Mother of three Halema Begum 'camps out' in her son's room at the moment to prevent him from spreading bodily fluids on objects.
In an urgent request for additional support from children's services and for her landlord, Birmingham City Council, to make housing adaptations, she disclosed the specifics of her "SEND crisis" and stated: "I'm exhausted, mentally, physically, emotionally - every way possible." She has had to clear out her room to keep an eye on her autistic, ADHD, and learning-disabled son, and remove all of his furniture—aside from the bed they share—to stop him from hurling it from windows.
Everything in their Erdington home, including shower gel and medications, has to be 'locked away' to keep him from getting to it, she said. Her eldest son, 14, also has autism, learning disabilities and hyper mobility and has been out of school since January after an exclusion - further adding to the mum's care load.
She is now pleading with Birmingham City Council to help him her teenager into education, while also urging Birmingham's Children's Trust to increase her respite hours in respect of her younger son. She told BirminghamLive: "It seems every single day is a new battle, you know when you just feel like crawling into bed and not facing the day?
"It's one of those situations where someone is asking for help numerous times and there's only so many times they're going to ask - then they are going to reach breaking point. I'm the only adult caring for two disabled kids plus my daughter, in this situation I don't matter, I live for them.
"I've got a child who literally requires every ounce of my attention when he's at home and then I have my eldest child at home when the other two are at school. There is no time to rest or recharge.
"This is because he's smearing every type of bodily fluid he can and when he's eating, he makes himself sick. He can make himself sick on demand. His smearing was becoming unbearable to clean on a daily basis, I had to bin his mattress and I moved into his room with him in February so I can monitor and stop, or minimise any sort of smearing from happening.
"I'm sleeping in the same bed. His room is quite compact, I've had to take every bit of furniture out the room because he chucks it out the window." Among the house alterations, Halema has asked for locks to be added to the windows to avoid such incidents.
"I've a child who relies on me; when I'm in the kitchen, he's in the kitchen, he's literally my shadow. When I'm sleeping, he's next to me. It seems like I've got a baby in my house." For an hour each day he has to have water therapy in the bath to help with sensory overload, but this too, requires her full attention.
She continued: "If I don't stay in the bathroom with him, the whole house is getting flooded. I've got outlines of the bath on the kitchen ceiling. I can't leave him." She has asked the council for a bathroom to be installed downstairs to avoid such incidents.
Her eldest son currently receives 56 days respite care a year, while her youngest receives 36 days - but she said she needed to increase his hours to match.
"He'll go for two nights to a children's centre and then two weeks later, he'll go for one night; he goes at 4pm and comes back the following morning. We've got Forward Thinking Birmingham involved, we've got a nurse that's allocated to him, they have given letters in support of him getting additional respite.
"I've pleaded with children's services and said: 'Can I have ten consecutive days because I'm exhausted, mentally, physically, emotionally, every way possible'. I'm just exhausted. You know when people say I'm done? I'm literally hanging on by a thread.
"My little bit of rest I did have was when my eldest son was at school, obviously that's not even happening because he's been at home since January this year."
Even when her younger son is away, she finds herself having to clean the house. "He spits a lot as well. When he's at respite, what I'm doing is literally just sanitising the whole house, it's not a break," added Halema.
"You go round every room to disinfect it. I've sent the school and social workers pictures of faeces over the walls and everything. When he's literally pooed himself and smeared it all over himself, walking up the house to get to upstairs, makes no sense to me. If there was a bathroom downstairs, I could wash him down.
"It seems like it's nothing, but to a family with disabled children, even the slightest thing - whether it's a little bathroom - it makes a huge difference. If my second son's respite matched up with my eldest son it would allow a break and also allow my daughter, who is seven, to have some one on one mum time."
A Birmingham Children's Trust spokesperson said: "We do not comment on individual cases involving children and families." A Birmingham City Council spokesperson added: “Whilst we do not comment on individual cases, we work hard to ensure all our children are placed in an appropriate education setting.”
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