Tonight when Tavia had a seizure in the community someone stole from her while she was unconscious. I'm disgusted that someone could do that but I'm not surprised. Nor am I surprised that no one helped her. As someone who's worked in the field of disability for over 20 years, I am appalled at the lack of support for my daughters health and safety. I've been fighting for support for more than 10 years for her. My experience is hard to put into words. Doctors, Fraser Health Authority and service providers make promise after promise. Each time they fail to come through with any support. My daughters mental and physical health has continued to decline. Our family and Tavia continue to suffer as a result of not having proper supports for her. I've taken to social media because I'm begging anyone out there to help. I'm trying to find families, parents or people, who continue to fall through the cracks because their needs are considered too complex. The solution seems to be to ignore the people who don't have an easy ‘fix'. I'm trying to draw attention to this gross over-site in the community living and health sector. If I told doctors I drank during my pregnancy my daughter could get the support she needs (no I didn't drink alcohol during pregnancy). But because she was born without a disability and her disability was acquired later, due to a progressive brain disease (epilepsy) there is no appropriate support. The minimal support she does receive is useless. The staff are not allowed to administer meds, take her to appointments, or supervise for adequate time while I work. Most of the day my daughter is alone and at risk of sustaining a major injury, as she has many times already. She is left alone, so her depression worsens and her mental health plummets. What's painfully sad to me, is that her life will continue to look this way until she gets some appropriate support. She will continue to deteriorate and sustain more injuries. Her mental health will worsen, putting her life at risk to suicide in addition to the fear of her life being taken by a seizure or serious injury from a seizure. Her circle of support becomes smaller and smaller and we are left alone to watch her suffer, feeling powerless and helpless, unable to help no matter how hard I advocate. Change starts with a single person saying NO. NO i won't accept this anymore. NO you can not push us to the side and ignore our cry's for help. NO I will not let my child's life be taken because of a system of government that continues to deny my daughter the services she needs. I will be contacting our MLA and the Minister of Health and social services. Please share any other ideas you have of contacts for me to reach out to. Please share this post. Please tag your friends who work in social services or government or media. Please help me get in touch with whoever it is that can help us. Epilepsy LifeLinks Epilepsy Centre Twitchy Epileptic
Posted Date : 02/03/2019
Anonymous
Tonight when Tavia had a seizure in the community someone stole from her while she was unconscious. I’m disgusted that someone could do that but I’m not surprised. Nor am I surprised that no one helped her.
As someone who’s worked in the field of disability for over 20 years, I am appalled at the lack of support for my daughters health and safety.
I’ve been fighting for support for more than 10 years for her. My experience is hard to put into words. Doctors, Fraser Health Authority and service providers make promise after promise. Each time they fail to come through with any support.
My daughters mental and physical health has continued to decline. Our family and Tavia continue to suffer as a result of not having proper supports for her.
I’ve taken to social media because I’m begging anyone out there to help.
I’m trying to find families, parents or people, who continue to fall through the cracks because their needs are considered too complex. The solution seems to be to ignore the people who don’t have an easy ‘fix’.
I’m trying to draw attention to this gross over-site in the community living and health sector.
If I told doctors I drank during my pregnancy my daughter could get the support she needs (no I didn’t drink alcohol during pregnancy). But because she was born without a disability and her disability was acquired later, due to a progressive brain disease (epilepsy) there is no appropriate support.
The minimal support she does receive is useless. The staff are not allowed to administer meds, take her to appointments, or supervise for adequate time while I work. Most of the day my daughter is alone and at risk of sustaining a major injury, as she has many times already. She is left alone, so her depression worsens and her mental health plummets.
What’s painfully sad to me, is that her life will continue to look this way until she gets some appropriate support. She will continue to deteriorate and sustain more injuries. Her mental health will worsen, putting her life at risk to suicide in addition to the fear of her life being taken by a seizure or serious injury from a seizure.
Her circle of support becomes smaller and smaller and we are left alone to watch her suffer, feeling powerless and helpless, unable to help no matter how hard I advocate.
Change starts with a single person saying NO.
NO i won’t accept this anymore. NO you can not push us to the side and ignore our cry’s for help.
NO I will not let my child’s life be taken because of a system of government that continues to deny my daughter the services she needs.
I will be contacting our MLA and the Minister of Health and social services. Please share any other ideas you have of contacts for me to reach out to.
Please share this post. Please tag your friends who work in social services or government or media. Please help me get in touch with whoever it is that can help us.
Epilepsy LifeLinks Epilepsy Centre Twitchy Epileptic