Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 My child was diagnosed with CHARGE at 3 weeks of age, we didn't understand that combined vision hearing loss equaled deafblindness until 13 months of age. Because Dylan did not lose his vision or hearing, he does not grieve its absence. This is just how life is, and he is happy. Learning to parent a child who cannot hear you when you sing to them or talk soothingly to them when they are upset, who cannot look into your eyes as you lovingly tell them it is going to be okay is different for us. For me I had to learn to parent Dylan according to his cues instead of how I parented my other kids. When I did we enjoyed each other. We rely on touch and understand each other well. Finding educational strategies that can help Dylan communicate has been important. Programs for the Deaf and programs for the vision impaired / blind are not adequate. His professionals must understand deafblindness, which I think is near impossible in the public school setting. The biggest impact to our family is on our social lives. Because Dylan learns about environments through opening and closing doors, and understands the world through movement, it is not relaxing to take him to people's homes for barbecues etc. I must be with him every second, so I miss out on the socializing while there. We are not invited over as often as we used to be. In any article I would want people to know that although life is different, it is not bad. Humans are uncomfortable with what we do not know, so someone looking in at my life thinks it must be so hard or so sad. It is not. It is just the life that we know. We have different challenges, but also different blessings. For someone who expects their child to steadily progress through their development, they will never understand the joy of watching your child wave goodbye for the first time at age 8yrs. Yes there is grief along the way, but there is in parenting any child. The only thing I can say about living with Dylan is that he is pure and he brings incredible peace and joy wherever he goes. If you have further questions you may feel free to call me. Kim Lauger > I'm a reporter, whose past experience has been in writing about older > people with acquired deafblindness - so I have much to learn. > > > > >> >>> Hello >>> >>> I've been asked by Sense to write about what it's like for > families >>> of children who are deafblind or who have multiple disabilities. >>> >>> What do you think needs talking about? >>> >>> Are there any taboo areas which you'd like discussed in the open? >>> >>> I've been told that Dads don't often get much say in conversations >>> about family life, so it would be great to hear from some of you. >>> >>> Thank you - I'm looking forward to hearing from you. >>> >>> Best wishes >>> >>> >>> >>> >>> >>> >>> Membership of this email support groups does not constitute > membership in the >>> CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@c... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, > 2005. >>> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, > you may >>> contact CHARGE Syndrome Canada at 1- (families), visit >>> www.chargesyndrome.ca, or email info@c... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Dear Kim, your email was wonderful, and really helpful. Would you mind if I quoted you in my piece? If you'd be OK with that, it would be useful to know where you're based - we're in the UK, so even a vague idea would be fine! Thanks, and best wishes Re: Re: family life > My child was diagnosed with CHARGE at 3 weeks of age, we didn't understand > that combined vision hearing loss equaled deafblindness until 13 months of > age. > > Because Dylan did not lose his vision or hearing, he does not grieve its > absence. This is just how life is, and he is happy. > > Learning to parent a child who cannot hear you when you sing to them or talk > soothingly to them when they are upset, who cannot look into your eyes as > you lovingly tell them it is going to be okay is different for us. For me I > had to learn to parent Dylan according to his cues instead of how I parented > my other kids. When I did we enjoyed each other. We rely on touch and > understand each other well. > > Finding educational strategies that can help Dylan communicate has been > important. Programs for the Deaf and programs for the vision impaired / > blind are not adequate. His professionals must understand deafblindness, > which I think is near impossible in the public school setting. > > The biggest impact to our family is on our social lives. Because Dylan > learns about environments through opening and closing doors, and understands > the world through movement, it is not relaxing to take him to people's homes > for barbecues etc. I must be with him every second, so I miss out on the > socializing while there. We are not invited over as often as we used to be. > > In any article I would want people to know that although life is different, > it is not bad. Humans are uncomfortable with what we do not know, so > someone looking in at my life thinks it must be so hard or so sad. It is > not. It is just the life that we know. We have different challenges, but > also different blessings. > > For someone who expects their child to steadily progress through their > development, they will never understand the joy of watching your child wave > goodbye for the first time at age 8yrs. Yes there is grief along the way, > but there is in parenting any child. > > The only thing I can say about living with Dylan is that he is pure and he > brings incredible peace and joy wherever he goes. > > If you have further questions you may feel free to call me. > > Kim Lauger > > > > > > > > > I'm a reporter, whose past experience has been in writing about older > > people with acquired deafblindness - so I have much to learn. > > > > > > > > > >> > >>> Hello > >>> > >>> I've been asked by Sense to write about what it's like for > > families > >>> of children who are deafblind or who have multiple disabilities. > >>> > >>> What do you think needs talking about? > >>> > >>> Are there any taboo areas which you'd like discussed in the open? > >>> > >>> I've been told that Dads don't often get much say in conversations > >>> about family life, so it would be great to hear from some of you. > >>> > >>> Thank you - I'm looking forward to hearing from you. > >>> > >>> Best wishes > >>> > >>> > >>> > >>> > >>> > >>> > >>> Membership of this email support groups does not constitute > > membership in the > >>> CHARGE Syndrome Foundation. > >>> For information about the CHARGE Syndrome > >>> Foundation or to become a member (and get the newsletter) > >>> please contact marion@c... or visit > >>> the CHARGE Syndrome Foundation web page > >>> at http://www.chargesyndrome.org > >>> 7th International > >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, > > 2005. > >>> Information will be available at our website > >>> www.chargesyndrome.org or by calling 1-. In Canada, > > you may > >>> contact CHARGE Syndrome Canada at 1- (families), visit > >>> www.chargesyndrome.ca, or email info@c... Thank you! > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 Michele - many thanks for offering to help. I have so many questions - but I'll put down a few key ones. If you feel that any are too intrusive, please do say so, or just ignore them. Would you be happy for me to quote you in the piece? If so, it would be useful to know where you live - not in detail, just enough for our readers in the UK to place you. Here are my questions: What is the effect of CHARGE on Aubrie? What does it make hard for him? How has CHARGE affected the other members of your family? Has it affected your relationship with DJ? And how does feel? Has it changed the roles you take on in the family? What has been your biggest challenge as a family so far? How have you dealt with it? Have others helped? I'm hearing that health - both physical and mental - can be put under considerable pressure when caring for a child with a multiple disability. How have you and your family been? It sounds as though many people find that their social life and leisure is greatly affected - what has been your experience? Is there anything that people don't talk about in public, but which you'd like to see out in the open? And finally, how do you respond when people call you a saint (as I'm sure they do!)? What kind of person are you? Has Aubrie's CHARGE changed you? Many thanks once again Best wishes Re: family life > - > I'd be happy to help you with your article, but I'm feeling at a loss on > where to begin. Maybe you could give us some specific questions? > > Michele W > mom to Aubrie (6 yrs) CHaRgE and (12 yrs) wife to DJ > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Huge thanks Kim - I'm really grateful. Best wishes Re: Re: family life > > > > > >> My child was diagnosed with CHARGE at 3 weeks of age, we didn't understand > >> that combined vision hearing loss equaled deafblindness until 13 months of > >> age. > >> > >> Because Dylan did not lose his vision or hearing, he does not grieve its > >> absence. This is just how life is, and he is happy. > >> > >> Learning to parent a child who cannot hear you when you sing to them or > > talk > >> soothingly to them when they are upset, who cannot look into your eyes as > >> you lovingly tell them it is going to be okay is different for us. For me > > I > >> had to learn to parent Dylan according to his cues instead of how I > > parented > >> my other kids. When I did we enjoyed each other. We rely on touch and > >> understand each other well. > >> > >> Finding educational strategies that can help Dylan communicate has been > >> important. Programs for the Deaf and programs for the vision impaired / > >> blind are not adequate. His professionals must understand deafblindness, > >> which I think is near impossible in the public school setting. > >> > >> The biggest impact to our family is on our social lives. Because Dylan > >> learns about environments through opening and closing doors, and > > understands > >> the world through movement, it is not relaxing to take him to people's > > homes > >> for barbecues etc. I must be with him every second, so I miss out on the > >> socializing while there. We are not invited over as often as we used to > > be. > >> > >> In any article I would want people to know that although life is > > different, > >> it is not bad. Humans are uncomfortable with what we do not know, so > >> someone looking in at my life thinks it must be so hard or so sad. It is > >> not. It is just the life that we know. We have different challenges, but > >> also different blessings. > >> > >> For someone who expects their child to steadily progress through their > >> development, they will never understand the joy of watching your child > > wave > >> goodbye for the first time at age 8yrs. Yes there is grief along the way, > >> but there is in parenting any child. > >> > >> The only thing I can say about living with Dylan is that he is pure and he > >> brings incredible peace and joy wherever he goes. > >> > >> If you have further questions you may feel free to call me. > >> > >> Kim Lauger > >> > >> > >> > >> > >> > >> On 7/5/04 9:11 AM, " le6ygne " wrote: > >> > >>> I'm a reporter, whose past experience has been in writing about older > >>> people with acquired deafblindness - so I have much to learn. > >>> > >>> > >>> > >>> > >>>> > >>>>> Hello > >>>>> > >>>>> I've been asked by Sense to write about what it's like for > >>> families > >>>>> of children who are deafblind or who have multiple disabilities. > >>>>> > >>>>> What do you think needs talking about? > >>>>> > >>>>> Are there any taboo areas which you'd like discussed in the open? > >>>>> > >>>>> I've been told that Dads don't often get much say in conversations > >>>>> about family life, so it would be great to hear from some of you. > >>>>> > >>>>> Thank you - I'm looking forward to hearing from you. > >>>>> > >>>>> Best wishes > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> > >>>>> Membership of this email support groups does not constitute > >>> membership in the > >>>>> CHARGE Syndrome Foundation. > >>>>> For information about the CHARGE Syndrome > >>>>> Foundation or to become a member (and get the newsletter) > >>>>> please contact marion@c... or visit > >>>>> the CHARGE Syndrome Foundation web page > >>>>> at http://www.chargesyndrome.org > >>>>> 7th International > >>>>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, > >>> 2005. > >>>>> Information will be available at our website > >>>>> www.chargesyndrome.org or by calling 1-. In Canada, > >>> you may > >>>>> contact CHARGE Syndrome Canada at 1- (families), visit > >>>>> www.chargesyndrome.ca, or email info@c... Thank you! > >>>>> > >>>>> Quote Link to comment Share on other sites More sharing options...
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