Living with Autism: Welcome Home Stevie

My name is Murray Alexander I am the parent of a 20 year old severally Autistic boy Steven. Steven was first diagnosed at two and a half years of age. And like most parents of Autistic children know we have had our shares of ups and downs. But undeniably the last four months or so... have been the most difficult of his life and ours. Steven has been away from us for over a year now. The only reason that we're doing this... ...is to show other people what went on in our house. (Murray narrates video) Welcome to our house. Hello Sam you've been a bit traumatised haven't you buddy. Nearly every room in the house. This is where we tried to hide at night time. But we would hear the "thump thump" as he came up into our room. (Janine) He knows that we love him. (Murray) We want him to come home and be like he was before. (Child's laughter) We were married in 1985. We had Tasha in 1991. And then Steven arrived in 1994. First two years were wonderful and he was doing brilliantly well. (Murray) He was always in the top percentile in weight and height. And meeting all his milestones. (Janine) Very happy little boy... until when he got a virus about two years old. (Murray) After that week where he was ill, we noticed things that he would start to walk up and down the corridor of our house. And he would be studying and looking at fine grains in the wood. And he seemed to lose all eye contact with us. (Murray) Tasha smile... Steven... Steven? (Janine) Through Plunket it was a Special Education person ...who came straight in accessing him. (Murray) When the idea was first put to us... that our son may be Autistic it was devastating. But at the same time it provided some answers as to how this rather unusual behaviour... it had a label. Steven is a loving boy... ...he really is. (Janine) It's weird to say it but I think he's very people orientated. (Steve) Watch camera. (Natasha) The happy times were everyday living with him and the funny things that he would do. The little routines that he has and getting to understand them. (Murray) We love him. We love him to bits. If Steven's happy then we are all happy. I have such a problem with this whole situation. It seems so unfair to me (tears). because he's such a good person and he doesn't deserve that. (Janine) He got very ritualistic and we had a few problems. (Murray) He has huge amounts of anxiety. His life had to be in order. And it had to be regimented, which I think helps to reduce that anxiety. Steven changed and he found it more and more difficult to alleviate the stressors that he was feeling. (Janine) He would bang a wall, which really wasn't like Steven. He wasn't aggressive... ...he wasn't. Then he would start to hit his own head when he got so frustrated and it was like him telling us... ...'I can't handle this.' By this stage the house was a bit of a shambles. But his own safety... he was really smacking his head really hard. I mean, to hell with the house... he could break walls. But I was scared he was going to break his head. Then he started turning it on us. (Murray) I hate to use the word attack but he would come to us and grab Janine or myself and would pull on our hair and push very hard. It was horrific. Because we'd always managed to cope. That last week in which we felt that Steven and ourselves... had really kind of lost the plot... we just felt that there was nothing more that we could do. (Janine) It was a night where I had actually rung... the Mental Health Crisis Team and said that he was medication... that he had Autism and I was told, "We can't help you we don't do Autism." And I did not know what to do. We went to Waitakere Hospital and spend 24 hours in that Emergency Department. Steven was so distraught, we were in a room... and he was smacking a concrete wall. By the time the 24 hours was up there was blood all over the concrete wall... ...from where he had split his hands. It was horrible. We got hold of the psychologist again and it was her recommendation that he be committed at that stage. Well we totally resisted that... ... there's no way that can happen. And we put him in a wheelchair and we took him home. I think that was the Tuesday night. On the Thursday night, um... ...he went absolutely berserk. I came out here and he was smashing the wall. There was no wall. Murray and I went outside because he was just rampaging. He was looking for us and he looked like he was going to do some damage. He had just had enough. He followed us outside and it was 11 o'clock at night. And he was yelling and smacking his palms on the pavers outside. Any sort of surface he was smacking. He was so angry and I had never ever seen... not only Steven... I had never seen anybody that distraught. In the morning I rang the psychiatrist and I said, "Okay you win we can't do this any more." I had just had my diagnosis the day before of course... ...of breast cancer. My whole family was falling apart. Everything was falling apart and it was just a big mess. So I didn't tell Steven... I packed him a bag. I wrote him a social story to say that he was going to hospital and he was going to stay there for a few days. And they were going to help make his head better. Um... I made him his favorite dinner and he came out and was eating his dinner. And I gave him a Lorazepam to calm him a little bit. Then they all arrived... so it was like he was going on a little adventure. He was quite calm and went to the bathroom... changed his clothes and brushed his teeth. Then they went to take him out through the hallway and then he got quite agitated. So the Police turned him around and put handcuffs on him. And put him in the Police car and took him away. Oh... That night we just hugged each other. It seemed so wrong but there was nothing else we could do. We could not help him. (Murray narrates video) It was a frightening situation. I want to show you a little collection of his tapes, which he adored and collected all his life. For some reason it gave him some sort of ousted to destroy stuff. This is Steven ten months before he went to hospital, showing his very gentle and caring side. When Steven went into the Mental Unit at Waitakere Hospital we quickly realised that he was in a place where... these were grown adults who were... going through horrific things in their own lives to be in that Unit. And our 20 year old boy who has... the mental capacity of a three or four year old is in with adults. (Janine) We were told that they couldn't guarantee Steven's safety ...in an adult mental health facility. And I was distraught. I was going into surgery the next day for a mastectomy and they're busy telling me they can't care for him... ...they can't look after him while I can't. So it was pretty rough, yeah. (Murray) We had to get him out of that place. We needed to do whatever we could. He was in there under the Mental Health Act. So we had lost our legal rights to remove him. That's when the battle started. I decided that if I did a short video and briefly showed people... people that matter... that what we were going through at the time that someone might be able to help us. (Murray narrates video) He was sectioned under the Mental Health Act. It breaks our heart to see him there. But after four Police interventions, including one at the Sturgess Respite House there is nowhere for him to go. That video had an impact and the right people did see it. And from an absolute desperate situation that we were in... things started to happen. (Janine) Wendy Duff is a great friend. She was the first mum of an autistic child that we ever met. She has huge involvement with Autism New Zealand and is an amazing advocate for all families. (Wendy) Are boys are close in age and they're pretty similar. And as they started to get into trouble with Steven, I was there for them. I came every second Friday to pick up Elliot to take him home for the weekend. The worse thing that can happen is that he's very inpatient and wants to go now. I've also prepared a plan my husband's at home in case today goes badly wrong because if he is uptight he's likely to hit out. He can be really dangerous and I can't handle him by myself. Hi Elliot how are you? Are you good? Have you got a kiss for me? In 2010 we ended up in crises. For about three months we were beaten and hit. For us it was diabolical. Through that process of us being in crises I realized how bad it can get. And I realized that the people who sit in the "ivory towers" have no idea when you say to them, "I'm trying to support a family... and we've got holes in our walls." They think, 'Oh someone's just put their hand through the wall.' Over the last year of working in the community and trying to help families, I've realized New Zealand has gone backwards. We thought we had it hard when we were first diagnosed. But I've realized now that actually we had it far better back then. Our funding was easier to obtain than what it is now. It's really scary because what is going to happen in the future? I fear that soon there's going to be another child killed by a parent... or vice versa because there is some aggression going on... within some of those families that I am helping. There is also some parents sadly the mums mostly... turning to mental health themselves. (Murray) From that point on where we had to find somewhere... for Steven to go to get him out of the Unit. And I rang up from Hamilton to Dargaville... and that's where the difficulty was he didn't have anywhere to go. The one shinning light was Spectrum. (Janine) Right now as with every Thursday... I always get butterflies... because I only get to see that little snap shot of Steve now... I only get to see him the once a week. It's actually really important that I see him happy. The guys that look after him know that as well... because I just think about him all week anyway. (Janine) Hello... come on. Hello good to see you. Okay let's take our bags in and do some cooking. Good man. Can you carry those in? That's Sean... yes drivers licence there you go... good boy. That's Hunter. That's Hunter's drivers licence. I got a picture of Hunter for your board okay. It's really important for Steven to know who's coming into the house so we use visuals all the time. New people in the house and also the carers for the day. Their photo goes up as well. It just decreases Steven's anxiety if he knows who is coming into the house. My name's Vaosila. I've been with Steven since he has come into the house. Coming from the Clinic he was a bit edgy. But since then he's progressed really well. We get him use to the environment and that this is his home. You're a good boy and you are doing really good. Good boy. Hey it's all good. It's all good okay. (Steven) Mmmm... Arghh... arghh... Which one? (Steven) Savage Garden. Bear necessities? (Janine) He likes a lot of the Disney songs. He knows every song that Robbie Williams has ever put out. There are certain other songs from different places that he's heard and I don't like him listening to those at all. They will either make him really happy or not. Savage Garden is a bit of an anxious song for him. So he portrays his moods through what he's asking to look at. Can I sit here too? (Janine reads from book) 'I Wish That I Had Duck Feet by Doctor Seuss.' 'I think it would be very good to have them when I play.' 'My mother would not like them she would say "Get off my floor." 'She would say, "You take your duck feet and take them out that door." (Steven) Ehh...urrr... (Janine) It's all good. (Steven) Mmmm... Mmmm... Do you want to finish the book? (Steven) No. (Steven screams) Ehhh! Yaaa!!! (Screams) Arghhh!!! And gone now!! Why!!! How!!! Do you want to have a rest? Yeah? Are you feeling better now? Those outbursts of behaviour happen probably once a day. But it is not every day of the week. There are moments where he's good. And there are moments where he just blows up. But they are only short and we try to redirect his focus. You did so good buddy and I am so proud of you. You did really good okay. Well done. I will see you next Thursday and what are we going to make? (Steven) Cupcakes. Cupcakes alright done. (Music instrumental) (Vaosila) We take Steven out every day and he has a weekly program. It's to places that are of interest to him. Good man well done. We have walks on the beach. Ambury Farm is a good place to go and visit the animals. (Murray) He's getting on really well. He has three full time carers because it is 24/7 care. They are fantastic guys and really brilliant. Steven loves them and they love him too. So obviously the house looks a lot different than it did. We had a lot of help. He hasn't been back here for over a year. When he does come back for a visit... none of us want that last scene to happen again. (Janine) He could come in and he could start smashing walls. We want this to still be a safe place for him. It's taken us all time to accept how Steven was then and actually see now that he is coming back to his old self. And for him to know that we've forgiven him. (Murray) He's coming up the driveway Janine. Right I will go downstairs. Yeah you can go inside darling. (Janine) He was straight in checking everything out. Checking our fridge out going straight in to help himself and feeling very comfortable. (Steven) Mmmm... Mmmm... Emmm... (Murray) This is still his home but he has another home as well. Now as he grows into adulthood he's moving onto a new part of his life. (Janine) We've given him wings so that he can fly. And we have got them as well now. (Beep beep) (Janine) We were really lucky that things have turned out... the way they have for our family. There are still a lot of families out there hurting in crisis who need help. (Murray) And they could be your neighbors.

Channel: Attitude

Views: 346,998

Rating: 4.8448567 out of 5

Keywords: AttitudeLive, Disability, Autism, Autistic, Aspergers, Asperger Syndrome, Independence, Parenting a child with a disability, Politics and advocacy, intellectual disability, My Perfect Family, Welcome Home Stevie, Murray Alexander, Janine Alexander, Waitakere secure mental health unit

Id: wHNMCfhiIOw

Length: 29min 12sec (1752 seconds)

Published: Mon Jul 11 2016