Parenting kids with Disabilities: A Father's Advice

today's the day we celebrate our dads and make sure they give the recognition they deserve we speak with fathers of kids with disabilities about the joys heartaches and the wisdom they've gained there's no script for Parenthood and dad's don't talk about it a lot these dads are all probably raising kids with disabilities we will always some oh but that's just Jimmy which is the classic thing to say are you trying to make me say what I like it a see thank you a different person maybe you know so no I don't know whether I'm Ashley that's what you know being a father of us is being there and making sure that your children have every opportunity to do everything they want to do you just get the hard facts thrown in your face and it's quite quite hard all my mates get different ways of doing things and every now and then they'll talk about a little nugget of information ago you know I never pulled out Dylan was diagnosed with Down syndrome and a heart condition before he was born but the disability wasn't his parents focus they passionately wanted Dylan to survive as a threat to his life was he gonna make full - and if he did make form to him Richard - PAH and his partner Mel arrived back from there Oh a with their first baby ten week old Natalie they had no idea she was blind originally my brother saw him see there's something wrong with her eye well ten year then that was blindness Campbell Crawford had always been a hands-on dad to his two boys an accident on a ride on mower cause five-year-old Harry to have his leg amputated and change Campbell's focus as a father I really did nothing for a year workwise just sort of made a few built yeah just did the general stuff but most my time was spent just with Harry David SS three children all with disabilities he confronted the challenges of disability as a first-time dad to Rebecca she was born with the spinal abnormality but is now in part thanks to dead a Paralympic swimmer when you that there was something wrong Pete was small her legs were small her feet brushed her ears all the time she was better as a stable and it wasn't until three days later that we actually went to a specialist he told us what the proper term disability was Derek Reed's eldest daughter Amelia was born with proud of Willi syndrome a rare genetic disorder they causes both intellectual and developmental delays it was kind of evidence within a couple of hours of her being born that there was something not right she was very happy tonic but just swapping care you can hold a lot like that and she'd Bend into a you know you shape business leader Roderick Dean has led some of New Zealand's largest corporations but he too had to manage the reality that his daughter Kristin was born with a disability Kristin died 16 years ago as a result of her degenerate disorder Rhett syndrome oh she was 16 when she was diagnosed but of course she was 18 months to two years when we realized there were complications Russell Brown is a journalist and media commentator he and his partner Fiona have two sons Jimmy and Leo who live with Asperger's a condition on the autistic spectrum what I have learned and through the kids and it's actually it sounds wishy-washy but it's actually incredibly practical thing is a knowledge of how people are different because of how they're wired and it's actually incredibly useful thing for a journalist to know to understand how and why people can be different that we are not all the same Headley was born blind and in some areas hospital in London we had you there 14 weeks before we bought her home the first sign was when she dropped an ice cream and she loved ice creams and so that was so unexpected and then that happened a couple of times and we realized that a hand coordination was having problems she's broken there's something wrong and you know what the hell is gonna happen in the future we just it was just heartbreaking it was confusing and it was a bit frightening and it was very demanding because of course Kristin found it very frustrating so she would sometimes in the middle of the night she'd cry for no explicable reason I don't know until literally what the challenges would be for raising them as as a father's point of view when you give a diagnosis you're always resistant to the idea of you know that your child could do this so I was really really hard that everybody else that we'd known and had no problems you know maybe the old cesarean or something like that it's better I think the problem is you wind something happens that drastically you actually don't know the consequences of what's gonna happen me you trying to protect this child and I something she'd read in you get a beard and almost cry yourself to sleep because it was like you know now this is this is horrible now we could tell you life expectancy so annoying it's a bit devastating when he out once once I finally got it all into my head what was going on I went outside by myself I think I cried for a fair amount of time and then and then just God knows something must have clicked right and I just saw right I'm gonna do whatever I need to do and you don't know what that is at the time but you know you're gonna do it and when I spoke to make mind Tony about it he's got two two kids that I've got downs in there and he said Chris he's another kid how do you treat your kids something I thought them all that certain I just immediately took that fear out you will always have to grieve for the child that you didn't have and then you really really have to get on with loving and raising the child you do here and that's yeah I'm quite proud of the fact that we were able to do that that we knew that we actually accepted the kids that we had and all that yeah and valued them as well actually I think I think your kids are amazing guys have a neat perspective they and every guy has a different way of being a dad my dad was a builder I Cavender a very practical man you know I think more than anything he that's what he gave me the limb center keeps Harry's old leagues cuz they're actually trashed they were broken to show kids this is what you this is what you parents need to bring your kids League and looking like which means it's climbing trees jumping off things I did approach people at a very senior level including meeting with the Minister of Education and the head of the Department of Education and the head of the Ministry of Health and so on who were very kind and seeing me as a youngster but totally unhelpful in terms of progressing matters and of course I also discovered that children in New Zealand at that time were not entitled to a free education so there's no obligation on anybody to help us his first day at schools really hard time you know take a kid in a wheelchair to school was pretty tough yeah we managed it we applied to form to go to the school which has older brother Wing T and he actually got tuned down so I rang the principal I said I'm bringing my son now I said this is what's happened I want him to be with his older brother the same school and they said no I'm sorry but he's hasn't been accepted that's no I'm gonna buy a uniform I'm gonna bring him on the first day at school and I'd like you to come and tell him it's not coming with this age in the meeting with the school week before and they accepted which was fantastic we've always had this situation where the system's worked really well for Jim and not at all well fully oh and I think there's a real listen and there is that there is no one-size-fits-all Crispus onsen as a hands-on dad runs his own tattoo business and shares the role of getting the kids out the door in the morning it's the practical stuff he's good at this is the man cave oh we try and call the Irish the kids will scratch it you don't really know it talking about this man cave I love this area I guess it's my little sanctum guys want to fix things with fixes men like to be able to get things fixed and to address problems and then typically I think find it pretty frustrating when they can't get a grip on what is the matter on how do we fix up the first few days first few weeks when we're just separately kind of like devastated and helpless there was no pain no goals you know what can we do here in this situation you can't fix anything so you just have to accept that you just yeah you can't fix things you just kind of just gotta be yeah I was out there for hard fix you know first thing I did jump on the computer make some phone calls you know try to talk to somebody try to kind of like say well what's gonna happen and you know at the time when Amelia was born it was issues with getting the appropriate drugs that Amelia needs from farm and things like that so really it was like focus okay someone's somebody to attack you know to to try and get what we need from the New Zealand government and farm X so I can fix the wheelchair I can fix a bit of equipment if it's broken but I can't fix what's wrong with either Rebecca meteora likes dollar bill I've bought picked the killer II you know it's you gotta be you gay you got a fit into any kind of situation and she has to to you I think that's all right I hope that's what I'm giving her there's a good sense of humor because you got to be able to laugh at at your situation and I think she keen ruling the opportunity to be with your kids and build a family life because you're off charging around you know trying to get some sort of buyer Kim cure or something is just a tragedy of my view I didn't think it was all that complicated all I wanted was somebody to tell me what they didn't know about Kristen's dilemmas and what they did know and in New Zealand we got so many alternative possible propositions offered to us that it was very confusing in America on the other hand they told us that they did not know they told us what they thought it could be but more importantly they said there's not going to be any way in which this can be fixed we have asked to if they had her operation that they could do would you like it done and she I don't think she answered she didn't know because he she's never now on site so to somebody's head site before great but for here I don't know and then we got on with our life in terms of making the most of Kristin's life without then feeling for example you know it became too difficult for her to go to school physically we didn't worry about that we just worried about making sure she had an enjoyable life the only thing that I do feel about with the boys is friends because that's always something that I can't do for my cat make friends for him and I think Jimmy's at the stage where he would like to have more friends he just doesn't have the skills which are it's a really complex skill set making friends any applicant to Australia just getting Amelia into a school took Derek and Debbie months of planning and meetings the issues are ongoing and it's a balancing act making sure Zoe gives her time to see this tool their big deal we can start a folder might not have much in it though he wants your own folder we don't need always for you we don't need to with the Ministry of Education and we don't need to have it individualized program for you so it might just be a little small section for Zoe have you got some pictures you want to go in here this is Amelia's medical folder or all the reports and bits and pieces that we need to keep for her various issues I kept Debbie Does take Amelia to most of the appointments but all the things that I need to read or anything that we need to referred is all keeping here I mean yeah it's not that not your typical child you actually to engage with her you have to go and see her and be with her and and impromptu to do things and stuff like that whereas Zoe will seek you out hunt you down for more flowers to 3/4 the problem was actually kind of like trying to moderate how much time he's been with Zoe and how much you with Amelia because Zoe would take a hundred percent of our time and Amelia wouldn't complain about that so we you know we have to kind of like try and try and kind of balance things out of it yeah she loves accounts and cheese because she's quite a hypotonic she's quite a floppy she actually kind of molds into you and she's giving it giving you a cuddle so this big cattle that you can even hear Zoe's bony years and she just she she's just just hippie and smiley most of the time we're gonna get a lemon shall we all right okay so they get a lemon for mummy get a lemon for mummy are you ready oh yes stuck isn't it the EU guy she we gonna give that to mommy here's a lemon for mummy isn't it did he kiss rollercoaster analogy is perfect and I'd say the the highest point is right probably the last couple of months is where wife and I have grown closer together probably closer together than we have in the last or since we've been going out with each other or married like any couple your struggle and yeah you argue and you make up and you argue it's like just one big circle I think that's it's how normal relationships are supposed to be I don't think there was any any added pressure from having a special-needs child but they were a tag team we we do what we can when we can but having a wife like Jillian there was not much space to you know get depressed or unhappy about things because we were off forever you know looking to what we could do next to enjoy life in those times when you have to make a very crucial set of decisions you want the unity and the relationship to be stronger than ever before but as a team I think we've done pretty well together you know one thing we're a good team we actually have a very close family life which in one way is what you get when one member of the family doesn't like to leave the house but I think they I see that as a real triumph I sometimes feel sad when I see parents of kids on the spectrum over cigarette feast with the idea of a cure rather than accepting that the child they have and for me he always think he could have done more to help you could achieve but I think the big achievement for us genuinely has been the fact that we have a good say on family life Kristen had the same mood about life as Jillian had so you know I was just uniquely blessed and having these you know to one young girl and why young woman who you know made my life such a huge pleasure well I think dads have got to sit at the back watch the overall and it's the nature my wife who does the all that talking to doctors talking to teachers only come on where I feel it's necessary and I think that's probably better for me cuz I'm more likely to shoot than wait and I think the fathers need to sit vacant gave gather everybody out and make sure everybody's alright I think we were we were lucky in some ways that in the beginning there when well one of us is really down the other one was an estate to be able to help and support the other 4db and I was it worked quite well at that time I kind of remember and I think if we were both down really upset at the same time it would have been a nightmare and that's the reality put a huge strain on our relationship and last year I think was around about this time we she's separated for about three weeks they've only been separated for four years three throwing our peers but I can't really blame that for any part of the separation really that was a lot of other issues I thought it was turning into the worst time of our lives but we couldn't have got to where we are now without going through there try maybe try and give yourself a bit a few more breaks than we got I think it was something like 13 years before Fiona and I got the nice way and there was too much me timers taking the dog for a walk around the lake when the girls are swimming or don't get to go sailing on a kala he bring every now and then and they're just times where it's just just me and doing my phone Richard's a health painter that was natural firm to share his love of music with Nathalie he reckons her talent was obvious right from the start you noticed that she had really good reason was the young kid you know she used to tape a feet as like a little two or three month old baby to the beat of the music and I just thought wow so what all kids do I don't know if they do but yeah so what yeah you know we just always had music on play guitar to her average guitar but played guitar drew just like a flower of course you know they get to page 16 year old and you know you kind of got a guide their own ways she writes a lot of a music she stopped telling slavery beyond where all he would get to say you know he got a night when went to get him guy say right thing but so being a big uncle you gave me strength but she's got to watch your team power but that way yeah David hoped his kids would share his love of sport you have your expectations of probably that's most fathers through their sons Ben all blacks or whites or something rather Alex lives with autism which has instead enhanced his creative talents it's stored as Rebecca Madeleine who have David up poolside most mornings your expectations of what you're gonna be able to do with your children changes with you when you're presented with something that had abnormal you've got to re-evaluate where you're going with you know with your life and that's what I found to be that you know the hardest thing to start with was Rebecca came to me when she was 10 years old after being to a safe life-saving trip with school and said I want to DC of life-saving I really enjoyed what we did on the beach and I thought I think I can do it so we took a wheelchair down and joined her up and she she went through and did all of the all of the things that it just makes you really proud when your children achieve things that you never thought that were possible the same with with all kids you know that the walking the the talking always all those things are all proud moments and I think that's what you have kids don't show them off when I look at my kids just why Brandon and Paige just hanging out together and just done little stuff in their room and they're just playing with the toys or reading a book or just hanging out to you that we're doing on the floor I just take that moment little moments all about the little things now it's one thing we've all got in common we all loved up to Hertz and they've have a geek culture that we all work yeah we all do seem like sci-fi don't we yeah as a matter of fact you guys pulled me away from System Shock 2 for Russell the future for his boys has always seemed uncertain at one time he never thought they'd be able to leave home who created the original Doctor Who theme I don't know but these days he's much more optimistic Jimmy who's been on this program and is about to start a film course we thought he would need sheltering all his life there was a period in his life where he was in the bubble and now he is independent his personable he has a great sense of humor so here things change you just don't know what they're going to change to I think a lot of people put too many more people into the into the complication I think it's your children you need to spend time with your children and love them and dese cool stuff with them just to see them all laughing I think it's that's one of those things that you have to live through grow through as much as anybody trust them taught me patience because one realized that you know she wasn't going to be able to make progress in the normal way but on the other hand she had this great enjoyment of life and so one understood that enjoying life has great diversity about us I remember the you know the smile and the laughter and the joyousness when we'd go to a new place I'll never forget it took o'clock in the morning driving in Hong Kong City and she couldn't speak but you know there she was peering out the window you know just so excited about being in a new place and that happened over and over so it's all that positive stuff that comes into my mind yeah I hope she's happy yeah you know the the career things not going to be something that she's going to have she's not gonna do a degree she'll be like anything get through school so you know it's I hope she's hit me you know this there's lots of people that I know that haven't got children and a money rich that it's the quality of life that we give our children that is our and we spend the future they be forgiven me for coming like to training this morning the unreal out of the family unit that we make we're not like other families public but I think that's a big achievement posh special needs puppies just takes you down a different Avenue I don't feel tired I don't know if it's just the way that I handle it but would to other photos I think you just gotta you got to accept it and do what you can a big thank you to all those father's for sharing their stories and I want to say Happy Father's Day to my dead Abbey fathers they don't welcome to airboats Athens home of the Olympics and this year's host city to the biggest sporting event on the international calendar the Special Olympics world Summer Games right in the thick of it attending his first major international power lifting event 21 year old Layton man hi go burn for Middle's check those out Arnold shoot Alya attitude was made with funding from New Zealand on earth you

Channel: Attitude

Views: 28,483

Keywords: Attitude, Episode, Fathers, Day, Dads, Sons, Daughters, Family, Russell, Brown, attitudetv, Disability, tv, downs, syndrome, autism, aspergers, Auckland, New, Zealand

Id: IB9N20-w5fU

Length: 28min 33sec (1713 seconds)

Published: Wed Sep 07 2011