Life with autistic children – one family’s neverending struggle and overwhelming love
Sam has tried to smother and strangle his sister. He has frequent violent outbursts and is clinically depressed with a severe anxiety disorder. And he’s a little boy who is just eight years old.
Sam and his six-year-old sister Ellie are loved and cherished by their parents Steve and Emma Mills, but the strain of caring for children with severe needs has left the family at breaking point.
Sam has very serious autism and Ellie has autism and minor learning difficulties with social and emotional problems.
“Are we permanently exhausted? That’s an understatement,” says dad Steve.”It’s like looking down a horrible, dark, neverending path. It is frustrating and heartbreaking.
“We are not on our own and just want people to understand and see what it’s like. Autism is a hidden disability and affects children in completely different ways.”
Steve and Emma, from Handsworth, sit together closely as they talk about their children. There’s an abundance of love in the family but the couple cope 24/7 with no respite. The children don’t sleep, the family has financial problems and they have a constant battle to get help from services.
“It has ripped our family apart and we have been on anxiety tablets,” says Emma. “My child is in such a terrible mental state and it is constant for us all the time.
“Because they both have autism it’s dangerous and we can’t leave them together. Sam has tried to smother and strangle Ellie before.”
The couple want others to be more aware of autism and understand how it affects children’s behaviour.
“If you look at Sam in the street you may think he’s being naughty but we want to highlight that it’s more than that.
“He walks and talks but has very complex needs. He doesn’t sleep and has medication for sleeping and anxiety.
“He has quite a lot of meltdowns and can be extremely angry and violent and you have to speak to him in a certain way.
“He may want to go to the park but it becomes impossible for him to do it because he sees it as a demand. Even if we go somewhere that’s exciting or positive there’s still shouting, screaming and crying.
“He has really significant sensory difficulties so he can’t walk through town without it getting too much and he will collapse on the floor.”
Emma was forced to give up her job as a civilian with South Yorkshire Police to care for Sam and Ellie and the couple now struggle financially. They have been waiting 18 months for a disabled facilities grant for a loft conversion at their home in Handsworth.
They only have a two-bedroomed house but Sam can’t share a room with Ellie. Until the grant comes through, Sam is sleeping with his parents.
Steve says: “We can’t afford to move since Emma had to give up work and our children are going to be living with us for a long time. They won’t move out when they are 18 like a lot of children.
“We asked for a grant for a loft conversion to make another bedroom because Sam can’t share with Ellie. The council agreed to the grant but we are still waiting for it. All our savings have gone.”
“We have to pay the bills on top of everything else,” adds Emma. “There’s a perception that SEND parents are just out to get what they can but it’s not true.”
“Along with the children, we have the same daily problems as other people. Ellie is only at school a few hours a week so it’s hard for me to get anything done. It can take ages to get the children asleep at night and then we then have to start doing all the normal tasks like housework.”
Flaws in the system
The couple have spent years battling to get their children into suitable schools and say parents who are already struggling then need to spend months, if not years, fighting for services, completing paperwork and appealing.
Steve says: “It would be nice if people just sat with us for a few hours and listened but you have to do a 40-page document and then it takes six to eight months to try to do something with that.
“We have to write why our children are different and need help. We are already suffering from the way we are living and the council is making us suffer more.
“This is not going to stop, education is just the first battle. We only want the best for them but there’s very little help out there. We want them to be happy.
“We would like to think they will leave and be able to cope with the outside world one day but it won’t be at 18.”
Sam’s best friend
They say dogs are a man’s best friend but labrador Willow Star has been a godsend for all the family.
Readers of The Star fundraised for the support dog and Emma says their life has been transformed.
“Willow helps keep Sam calm and safe. I attached him to Willow and if Sam tries to run away Willow will stand still so he can’t move. If he has a meltdown on the ground she will lie on him to protect him.
“She is like my right arm and Sam’s best friend.”
Ellie has six hours of respite from Sam, when a carer will take her to the park or cinema. Her parents, however, don’t receive any respite.
Emma says: “She doesn’t have an easy life at home – if Sam is having a bad day, everybody is having a bad day.”