P
poulsenjosh
Guest
Please pray for our baby to get better. For our marriage to grow stronger, for me and my wife to grow closer. Pray that this next week I will be abel to go out to the community to raise more support for the addition to our hose to give my baby a therapy room and a special needs bathroom. Pray the lord guides me who to talk to, that he is a light shining through me. That he gives me strength, and peace. That the lord bless my steps, and makes my words sweet. Please pray the lord will make this project of adding a addition to our house that other call impossibel possibel. May the lord be with my family, and strengthen us. May he provide peace and understanding in our house. May he make my words clear, and easy understood. May he help raise the $20,000 for the elvator. May he always be in charge, and may I just be he feet and hands. May God Soften and open others hearts to my daughters project. May he make a way, when there seems to be no way. May her restore my marriage and bring peace to my wife. May he make me a better husband and father.
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I am writing to ask for help, as a father and a disabled veteran to let you know how you can help, raise awareness, support, supplies, and/or funds for an important Christmas wish that will greatly improve the quality of life for one small angel, my daughter Alexandria (Alex) Poulsen. Alex is a 4-year-old female who has been diagnosed with an incurable disorder, Rett syndrome. Rett syndrome is a Neurodevelopment disorder due to mutations in the MECP2 gene on the X chromosome. She has been identified with a unique mutation, c.298C>G (p.L100V), in theMECP2 gene. This a rare incurable diagnoses that causes severe developmental disabilities and physical disabilities.
Alex's disability has inflicted itself all the way throughout Alex's' inner and outer extremities resulting in intensive medical needs. She requires full time assistance with all major areas of her life, i.e. feeding, bathing, walking, toileting, and personal hygiene. Caring for Alex is a full time job, requiring patience, finances, time, and energy. There is hope, it has been demonstrated that mice with the Rett mutation responded to environmental enrichment by increased ability to coordinate motor movements and motivation to try new tasks. This hope means that even though Alexandria has a disability and physical limitations, she has the ability to make progress with appropriate environmental enrichment in her physical environment.
This request is essential for her to build self-confidence and independence for the rest of her life. An accessible environment would help her independence, and minimize her disabilities; allowing her to grow and blossom. Alexandria's current physical environment is not contributing to her development, not supporting her learning and exploration. This an impediment to the above stated goals. The current poor design of our home, we have had to learn to adapt to be able to care for Alex and as a disabled Veteran, and as her full time caregiver, the poor design has made the task even harder for me because of my disabilities. This was not our plan when buying our house before our daughter was born. We envisioned thoughts of happiness and joy for our family, but we our house has turned into a jail for our daughter.
Our home is not designed for someone with triple disabilities and not designed for myself to be able to fully take care of my daughter. Her current limited physical home environment both inside and outside, is preventing her from exploring opportunities for herself due to her chronic disabilities. Our home does not foster independence for our little girl, but instead, it creates a situation, which is very unsafe for all of us. This is why she has a greater need for environmental enriched adapt recreation and play spaces.
As Alexandria's parents, we want to help our daughter Alex to increase her quality of life and safety by enhancing her independence and mobility by creating both an indoor and outdoor adapted therapy and play environment that is age-appropriate and developmentally appropriate. These adapted spaces will give her ample opportunities to establish a disposition to take risks and to believe that she is a competent and capable learner. By creating these spaces, Alexandria will be given a physical environment that encourages her to do as much as possible on her own to support, promote, and include self-directed and self-initiated play and learning. These new spaces will be designed to not only meet the needs of our 4 yr old daughter, Alexandria, but to also meet our safety concerns as parents.
The new spaces will offer Alexandria a simple, clear layout, accessible routes, and ergonomic design details that offer a barrier-free environment that foster active, creative play and exploration, which is central to normal child development. A developmental task of normal child development (and parenthood) is to move from total dependence on adults to a more independent stage. For Alexandria, independence can best be achieved by creating adapted environments that incorporate her individual preferences and abilities. In addition, these spaces must be designed to aid me in the full care of my daughter safely and without hurting myself. This is why we hope to build an indoor and outdoor adapted therapy, and playroom, and want to build a special needs bathroom.
We need an additional storage room for her equipment to be organized and safely put away. To safely tie these two spaces and bathroom tougher a wheel chair elevator is needed. As a father, I am ashamed to say I have fallen twice on the stairs with my daughter and worry about falling with her as she gets bigger, and taller. I consider myself strong, but with Alexandria's body cast, she is very awkward to carry. Alexandria needs a safe environment to get from the first floor to the second floor to be able to freely play in these two new spaces, and to go to bed. I need a safe way to get her to these spaces.
In order to accomplish this goal we need to add an extension to her room that will be used for her independence to participate in therapy and learning. Our living room is the space currently used for Alexandria's therapy, and storage of equipment, but is not appropriate space for Alex's therapy sessions or storage. It does not allow us a space to relax with our child or to relax with family and friends. Alexandria's current bathroom limits her independence and requires someone to help support her on the toilet, and support her in the bathtub. Her new bathroom would help create a barrier free space designed to grow with Alexandria to adulthood, giving her freedom, and us safety.
Our goal outside is to create Alexandria an outdoor space that provides a safe and nurturing environment, in which Alexandria can interact and learn. This space will empower her and better meet her needs. One of her needs is to help her with sensory integration by engaging all her senses. Helping her gain more independence will be very rewarding for everyone. Moreover, in order to accomplish this goal she will use outdoor equipment that has been adapted for her disabilities to be used both for therapy and for play. Having this space will help her independence, confidence, and pride to increases.
Therefore, in order to create this space for Alexandria we want instead of just dirt, a concrete pad in the back, on the left side of the house and a pad on the right side of the house. In addition, we also want grass areas and other landscaping to help minimize the dirt that Alexandria has to breathe in and in order to have an environment that engages her. The outdoor therapy and play space for Alexandria will allow more space when she is using her mobility aids (walker, wheelchair, or bike) and provide her with safe ways to enter and exit our house (using a French door in the back and a 36 inch door on the side to create a barrier-free design). This is essential that she receives this space and opportunity to move her body and explore. Moreover, for her safety and security and for us to feel safe and secure, she needs security. To accomplish this goal she needs a block wall extension on both sides and two lockable gates that will prevent unauthorized access and exit. For security, and in order to be functional day and night, the outdoor space needs proper lighting.
Furthermore, a dog run needs to be made to help separate and safely included the dogs when she is outside playing, so the dogs do not topple her over. Her new physical environment and equipment will be arranged to minimize hazards and will support our role as parents in assisting in her play and learning environment. This will support us as a family by showing us the possibility of us being happy again exists. We have been so overwhelmed by all the amount of care, therapies, and doctor appointments for daughter that we need to to have space to reconnect with each other and friends. Creating these spaces would provide us with security, wellbeing and safety.
So far, in our community, we have talked to a designer Tom (Tomenstock Design), who has finished and donated the blue prints, our General Contractor, Kevin Evans (Annex General contracting). Barnett Aldon Ironworks (Don Best) has decided to make and donate 2 of the gates for Alex, and jprgravel (Racquel Villegas) has said they can help with gravel. Coyote Concrete will help with concrete. Chavez Roofing has donated the roofing supplies, and roofing labor, Champion Truss will donated the truss. Utility block has decided to donate all the cinder bllock need for the wall extension and dog run. sherwin williams, will donate the paint, Martin Brothers plumbing will donate the plumbing rough in. In addition, KDS Homes (Kevin Emmons), Aberdeen Construction (Kendrick Johnson), Tony Villalobos, are willing to donate some labor. This is amazing considering most of these companyies them selves are strugling. We feel so blessed.
Finally, three great Veteran groups, What would you give? (Shane), Disabled American Veterans, and Patriot Baptist Church (Pastor Mcbride) joined this cause. A veteran owned business from Florida, Abrams Group Construction,addition, Veteran friendly bank, USAA (Susan J. Stoutamire, Barbara Gentry) has stood up to the plate.
We have talked to some companies to try to get the supplies need for this project (Home Depot (Shawn Morton), Stocks Building Supply (Tom Primmer), Lumber Liquidators (Juli Denike), and 89 Lumber (Vicki Fender, Alamogordo) (Both for Lumber Liquidators and 89 Lumber, I need a nonprofit to sponsors us, and news coverage) .
We are not there yet and we our reaching out to our community to ask for help to build a safe environment for us as her parents to care for her. I understand you may not be able to help with the whole amount, but I ask your help to collaborate with others in our community to support and encourage Alexandria's abilities, not her disabilities. In order to build the new indoor and outdoor space that will allow flexibility and independence that includes safety, we still need help with labor from all trades. We need building supplies, to included joist, lumber, electrical, plumbing, and roofing supplies. We need finishing products, to included cabinets, storage organizers, plumbing fixtures, sink, doors, molding, and lights. We need landscaping materials, concrete and block for the walls.
Finally, we need help to raise the $20,000 to pay for the elevator and installing the elevator. This is only 200 people giving $100 or a 1000 giving $20. As a 100% OIF disabled Veteran with PTSD I am unable financially to undertake this vital environmental modification for my daughter, and as my daughters full time care giver I do not have the time to undertake it by myself.
Alexandria should be allowed have her independence to choose where she wants to go and play. Independence is something people take for granted, but for Alexandria, having the ability to go to her room, the kitchen, or go outside and play are all activates that are central to her development. Therefore, if you could help with as much as you can, we would appreciate any assistance, or guidance. Thank you very much for considering this request. If you require further information, please do not hesitate to contact me.
Sincerely,
Joshua Poulsen
Disabled OIF Veteran
New Mexico International Rett Syndrome Representative (IRSF)
602-791-8572
3304 Crimson Rose Lane Sw,
Albuquerque, NM
poulsenjosh@aol.com
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I am writing to ask for help, as a father and a disabled veteran to let you know how you can help, raise awareness, support, supplies, and/or funds for an important Christmas wish that will greatly improve the quality of life for one small angel, my daughter Alexandria (Alex) Poulsen. Alex is a 4-year-old female who has been diagnosed with an incurable disorder, Rett syndrome. Rett syndrome is a Neurodevelopment disorder due to mutations in the MECP2 gene on the X chromosome. She has been identified with a unique mutation, c.298C>G (p.L100V), in theMECP2 gene. This a rare incurable diagnoses that causes severe developmental disabilities and physical disabilities.
Alex's disability has inflicted itself all the way throughout Alex's' inner and outer extremities resulting in intensive medical needs. She requires full time assistance with all major areas of her life, i.e. feeding, bathing, walking, toileting, and personal hygiene. Caring for Alex is a full time job, requiring patience, finances, time, and energy. There is hope, it has been demonstrated that mice with the Rett mutation responded to environmental enrichment by increased ability to coordinate motor movements and motivation to try new tasks. This hope means that even though Alexandria has a disability and physical limitations, she has the ability to make progress with appropriate environmental enrichment in her physical environment.
This request is essential for her to build self-confidence and independence for the rest of her life. An accessible environment would help her independence, and minimize her disabilities; allowing her to grow and blossom. Alexandria's current physical environment is not contributing to her development, not supporting her learning and exploration. This an impediment to the above stated goals. The current poor design of our home, we have had to learn to adapt to be able to care for Alex and as a disabled Veteran, and as her full time caregiver, the poor design has made the task even harder for me because of my disabilities. This was not our plan when buying our house before our daughter was born. We envisioned thoughts of happiness and joy for our family, but we our house has turned into a jail for our daughter.
Our home is not designed for someone with triple disabilities and not designed for myself to be able to fully take care of my daughter. Her current limited physical home environment both inside and outside, is preventing her from exploring opportunities for herself due to her chronic disabilities. Our home does not foster independence for our little girl, but instead, it creates a situation, which is very unsafe for all of us. This is why she has a greater need for environmental enriched adapt recreation and play spaces.
As Alexandria's parents, we want to help our daughter Alex to increase her quality of life and safety by enhancing her independence and mobility by creating both an indoor and outdoor adapted therapy and play environment that is age-appropriate and developmentally appropriate. These adapted spaces will give her ample opportunities to establish a disposition to take risks and to believe that she is a competent and capable learner. By creating these spaces, Alexandria will be given a physical environment that encourages her to do as much as possible on her own to support, promote, and include self-directed and self-initiated play and learning. These new spaces will be designed to not only meet the needs of our 4 yr old daughter, Alexandria, but to also meet our safety concerns as parents.
The new spaces will offer Alexandria a simple, clear layout, accessible routes, and ergonomic design details that offer a barrier-free environment that foster active, creative play and exploration, which is central to normal child development. A developmental task of normal child development (and parenthood) is to move from total dependence on adults to a more independent stage. For Alexandria, independence can best be achieved by creating adapted environments that incorporate her individual preferences and abilities. In addition, these spaces must be designed to aid me in the full care of my daughter safely and without hurting myself. This is why we hope to build an indoor and outdoor adapted therapy, and playroom, and want to build a special needs bathroom.
We need an additional storage room for her equipment to be organized and safely put away. To safely tie these two spaces and bathroom tougher a wheel chair elevator is needed. As a father, I am ashamed to say I have fallen twice on the stairs with my daughter and worry about falling with her as she gets bigger, and taller. I consider myself strong, but with Alexandria's body cast, she is very awkward to carry. Alexandria needs a safe environment to get from the first floor to the second floor to be able to freely play in these two new spaces, and to go to bed. I need a safe way to get her to these spaces.
In order to accomplish this goal we need to add an extension to her room that will be used for her independence to participate in therapy and learning. Our living room is the space currently used for Alexandria's therapy, and storage of equipment, but is not appropriate space for Alex's therapy sessions or storage. It does not allow us a space to relax with our child or to relax with family and friends. Alexandria's current bathroom limits her independence and requires someone to help support her on the toilet, and support her in the bathtub. Her new bathroom would help create a barrier free space designed to grow with Alexandria to adulthood, giving her freedom, and us safety.
Our goal outside is to create Alexandria an outdoor space that provides a safe and nurturing environment, in which Alexandria can interact and learn. This space will empower her and better meet her needs. One of her needs is to help her with sensory integration by engaging all her senses. Helping her gain more independence will be very rewarding for everyone. Moreover, in order to accomplish this goal she will use outdoor equipment that has been adapted for her disabilities to be used both for therapy and for play. Having this space will help her independence, confidence, and pride to increases.
Therefore, in order to create this space for Alexandria we want instead of just dirt, a concrete pad in the back, on the left side of the house and a pad on the right side of the house. In addition, we also want grass areas and other landscaping to help minimize the dirt that Alexandria has to breathe in and in order to have an environment that engages her. The outdoor therapy and play space for Alexandria will allow more space when she is using her mobility aids (walker, wheelchair, or bike) and provide her with safe ways to enter and exit our house (using a French door in the back and a 36 inch door on the side to create a barrier-free design). This is essential that she receives this space and opportunity to move her body and explore. Moreover, for her safety and security and for us to feel safe and secure, she needs security. To accomplish this goal she needs a block wall extension on both sides and two lockable gates that will prevent unauthorized access and exit. For security, and in order to be functional day and night, the outdoor space needs proper lighting.
Furthermore, a dog run needs to be made to help separate and safely included the dogs when she is outside playing, so the dogs do not topple her over. Her new physical environment and equipment will be arranged to minimize hazards and will support our role as parents in assisting in her play and learning environment. This will support us as a family by showing us the possibility of us being happy again exists. We have been so overwhelmed by all the amount of care, therapies, and doctor appointments for daughter that we need to to have space to reconnect with each other and friends. Creating these spaces would provide us with security, wellbeing and safety.
So far, in our community, we have talked to a designer Tom (Tomenstock Design), who has finished and donated the blue prints, our General Contractor, Kevin Evans (Annex General contracting). Barnett Aldon Ironworks (Don Best) has decided to make and donate 2 of the gates for Alex, and jprgravel (Racquel Villegas) has said they can help with gravel. Coyote Concrete will help with concrete. Chavez Roofing has donated the roofing supplies, and roofing labor, Champion Truss will donated the truss. Utility block has decided to donate all the cinder bllock need for the wall extension and dog run. sherwin williams, will donate the paint, Martin Brothers plumbing will donate the plumbing rough in. In addition, KDS Homes (Kevin Emmons), Aberdeen Construction (Kendrick Johnson), Tony Villalobos, are willing to donate some labor. This is amazing considering most of these companyies them selves are strugling. We feel so blessed.
Finally, three great Veteran groups, What would you give? (Shane), Disabled American Veterans, and Patriot Baptist Church (Pastor Mcbride) joined this cause. A veteran owned business from Florida, Abrams Group Construction,addition, Veteran friendly bank, USAA (Susan J. Stoutamire, Barbara Gentry) has stood up to the plate.
We have talked to some companies to try to get the supplies need for this project (Home Depot (Shawn Morton), Stocks Building Supply (Tom Primmer), Lumber Liquidators (Juli Denike), and 89 Lumber (Vicki Fender, Alamogordo) (Both for Lumber Liquidators and 89 Lumber, I need a nonprofit to sponsors us, and news coverage) .
We are not there yet and we our reaching out to our community to ask for help to build a safe environment for us as her parents to care for her. I understand you may not be able to help with the whole amount, but I ask your help to collaborate with others in our community to support and encourage Alexandria's abilities, not her disabilities. In order to build the new indoor and outdoor space that will allow flexibility and independence that includes safety, we still need help with labor from all trades. We need building supplies, to included joist, lumber, electrical, plumbing, and roofing supplies. We need finishing products, to included cabinets, storage organizers, plumbing fixtures, sink, doors, molding, and lights. We need landscaping materials, concrete and block for the walls.
Finally, we need help to raise the $20,000 to pay for the elevator and installing the elevator. This is only 200 people giving $100 or a 1000 giving $20. As a 100% OIF disabled Veteran with PTSD I am unable financially to undertake this vital environmental modification for my daughter, and as my daughters full time care giver I do not have the time to undertake it by myself.
Alexandria should be allowed have her independence to choose where she wants to go and play. Independence is something people take for granted, but for Alexandria, having the ability to go to her room, the kitchen, or go outside and play are all activates that are central to her development. Therefore, if you could help with as much as you can, we would appreciate any assistance, or guidance. Thank you very much for considering this request. If you require further information, please do not hesitate to contact me.
Sincerely,
Joshua Poulsen
Disabled OIF Veteran
New Mexico International Rett Syndrome Representative (IRSF)
602-791-8572
3304 Crimson Rose Lane Sw,
Albuquerque, NM
poulsenjosh@aol.com
