Martina is pleading for more support before her family is torn apart.
Here, Martina McNeill, 48, tells the story in her own words.
F￼or a while, we’d put it down to him being a boy, but now I was seriously worried.
Our two-year-old son Alex acted as though his four older sisters and little brother didn’t exist. During dinner, he’d barely eat and would stare up at the ceiling, laughing hysterically. And he’d stopped speaking. ‘I think he’s autistic,’ I told my husband Rod, 50. We arranged for him to have a series of tests, and when Alex was 36 months, the results arrived. They confirmed he did have autism, affecting his ability to communicate and interact. It was such a severe form, he was at the developmental stage of an eight to 18-month-old.
Bursting into tears, I grieved for the future my little boy would miss out on. Living in a rental, Alex shared a room with his brother and would wake him up by jumping on him. With no sense of danger and a high tolerance for pain, it was terrifying. One time, we were woken at 3am by a loud noise. Alex had opened the dishwasher and smashed the glasses, before walking on them. ‘This place isn’t safe for him,’ I told Rod. Scraping together what we could, we managed to buy a house so Alex could have his own room with a lock on the door.
Aged seven, he was prescribed medication, but a terrible reaction meant he had to come off the pills. Unable to be treated for his behaviour, it grew worse. Alex wrapped his curtains around his neck and hung from them. He also swung from the rail and tried to kick out the windows. We installed shatterproof glass and took away the curtains. When Alex smeared poo on his carpet, we replaced it with lino. It was like he had super-human strength too. He’d rip apart his sheets, mattress and bed frame, preferring to sleep on the hard floor. Biting his hands, he’d draw blood and he’d slap himself repeatedly. Bruises covered my body from where he hit me and skin was gouged out of my arms.
Moving all the furniture out of his room, except for a large chest of drawers, it looked like a prison cell. But it really was the only way we could keep him safe. Rod reduced his hours to work part-time too. There were moments I treasured. With his floppy blond hair and big grin, the rare times Alex asked for a cuddle it melted my heart. Because of the severity of his disorder, our boy wasn’t able to access respite care or go to school. Some care workers simply found it too difficult to engage with him. It meant I supervised him constantly. I’m not being a good mum to any of our kids, I tortured myself. Then Alex refused to leave the house altogether and wouldn’t wear clothes.
Every night, Alex shrieked constantly and jumped from his windowsill to the floor until about 4am. Sleep deprived, I could barely function and Rod took two weeks off work to help.
‘I can’t bear the idea of you going back,’ I sobbed after a week. Desperate, I had a nervous breakdown. And feeling like there was no other option, I finally called the child protection services.‘We need to relinquish care of our son,’ I told them. They said there was nothing they could do, which was soul-destroying. I loved my boy, and wanted the best for him. But I needed help. We applied to the National Disability Insurance Agency (NDIA), asking them to provide enough funding to have a carer eight hours a day, as well as an extension to our home. This would allow Alex to be separated from his siblings, aged 22, 18, 15, 12 and eight, for some much-needed respite.I also decided to share our story in the newspaper. Afterwards, complete strangers got in touch to thank me for speaking out. It helped something in me shift. ‘I’m not going to stop fighting for you,’ I told Alex. I want him to have a chance at a good life.
Alex, now nine, sleeps on a mattress used for psychiatric patients. It has no seam so he can’t destroy it. He’s happiest surrounded by mess, particularly shredded paper, as tearing magazines calms him down. He can rip up to 50 a day. Recently, Alex’s anxiety reduced enough that he agreed to go on a drive with one support worker. ‘Alex got out of the car,’ she told me back home. ‘He got out of the car!’ I screamed. I was thrilled! After that, they sent me photos of Alex at a playground and at a farm with the animals. Bursting into tears, I couldn’t believe it.
The NDIA has now approved funding for a carer six hours a day, but they couldn’t support the extension. So a friend of ours has set up a GoFundMe page, to raise money. If Alex had a sensory room and an area where he could play, I know he would feel so much happier. We love our son and want him to live to his potential. We want to help him live free of pain and discomfort. But we can’t do it without help.
To donate to help Alex, go to gofundme.com/fundraiser-for-alex-mcneill
Read more in this week's issue of that's life!