Chair lift for disabled mom & Autistic child

SHORT VERSION:

One teenaged boy with Autism, Sensory Processing Disorder and a Neuromuscular condition that is the best human a whole lot of people know, one full-time special needs mom with too long a list of physical disabilities (that the aforementioned teenager thinks he couldn't possibly be a better human than), and the amazing husband/dad/human stuck trying to be the fully functional one....who need for a variety of interconnected logistical, financial and health-related reasons to be able to move into a single-family house of their own.  Unfortunately, they need help to be able to buy a house that already is or can be renovated into a place accessible in relation to their various medical needs.

 

WHO: 
Our family is the kind of family that tends to either inspire people, or annoy them because of how cute we are.  BigJ- and L- (best friends that met the first day of college) have been together for over 20 years, against a variety of odds that all too commonly prove more than relationships can withstand -- things such as L-'s physical disabilities, the neurological disabilities of our now-13 year old son LittleJ-, and the financial stress that our family has always been under because of medical debts, despite how hard BigJ- works to support us.  Individually, we strive to defy the odds, as well.

BigJ- works full time as a manager, does the majority of the household-related tasks, is an actively devoted husband and father (as well as friend and community member), is stuck with all the extra responsibilities of being the only non-disabled member of our family....and yet considers himself increadibly lucky and blessed, and also the one with the easiest load to bear.  L- is regularly told that she must be making him up.

L-, who lives with chronic pain and fatigue from her medical conditions and can no longer formally teach, functions full-time as a special needs Mom, but also puts in all the work she can on the side as a disability educator and advocate, abuse counselor, writer, artist, and as-opportunities-arise human, animal and environmentally-based charity volunteer.  No one, medical specialists included, 'knows how she does it'.

LittleJ- survived extreme prematurity complicated by a blood disorder at birth, despite his parents being told, "Don't get attached.  You can't expect this child to survive."  (His Mom and Dad weren't any better at meeting those expectations than he was!)  Although now physically healthy, those early medical experiences left him with Autism Spectrum Disorder, a highly complex and pervasive case of Sensory Processing Disorder, the symptoms of both of those exacerbated by Seasonal Affective Disorder, and an as-yet-unspecified neuro-muscular disorder.  You might say he lives to defy stereotypes.  He's a high honors student while mainstreamed in a GenEd curriculum, a five-time award-winning photographer, and he's the kind of kid that stands up for OTHERS against bullies.  In a lot of ways, he's the kind of 'inspiration porn' viral video you never see, but should.

WHAT: 
Our family has always rented, but now we need to buy that house we have always dreamed of making a home of our own.  Financially, circumstantially -- and even when it comes down to that long-awaited plan to adopt shelter and rescue animals -- we have to take this step both to give ourselves more security and stability, and to allow ourselves more freedom to thrive.  The trick of it all is that circumstances have put us into the position of needing to buy a house after paying off enough medical debt to repair our credit, but before we've had time to rebuild much savings.  Finding a place near BigJ-'s work, L-'s doctors and a good enough school program for 'twice exceptional' LittleJ-, within budget, that is going to meet our family's needs....is challenging, let alone when forced to start making decisions during real estate's 'off' season and a seller's market to boot.  (That particular glitch in timing was created by the time limit parameters of the first time home buyer program the bank that prequalified us for a home loan, offered, eaten into by significant delays in when the same program actually had any of their required classes running.)  We need a house that meets certain architectural requirements in relation to L-'s degenerating mobility impairments, and which also has enough room for all of LittleJ-'s therapy gear and the kind of sensory environment that he needs to be able to function well enough to keep growing into his potential.

Having more money to work with opens up more options for us when looking at available houses.  It means the possibility of being able to do more to renovate a property we are considering, allowing us to safely close on a house within our time limits and still know we can make the house what we need it to be.  It makes it possible to 'put more down' in an offer we make on a house we really want, making it more likely the current owner will choose our bid.  It makes it easier, after closing on a house, to have some overlap time between still living in our rental and moving into the house, so that we can prepare for and make that transition with less health-hazardous stress.  Even if everything falls into place, having some extra money means we could do more to make our new household healthier for us.  We could replace more lights with fake-sunlight bulbs for LittleJ-, consider a tub with hydrotherapy jets for LittleJ- and L-, a new mattress for BigJ- and L- to replace their nearly 30yr old one, etc.

WHEN:
The time is now!  Home-ownership is considered by financial advisors to be the more fiscally thrifty and reliable option for us, vs. renting in our area, and might eventually lead to our family being able to invest more in health interventions that would support our being able to thrive.  (L- likes to call it, "Unhandicapping the disabled life.")  We don't want to get into a pattern of buying and selling to keep 'trading up' as our situation improves, however.  The goal is to avoid having to move again for as long as possible, to provide stability for LittleJ-.  In fact, along with the ability to make a property wheelchair-accessible (that's an issue of when, not if, for L-), another long-term consideration is whether a property has a large enough lot space to potentially build an adjoining apartment for LittleJ-, should he go through a phase of life when he is capable of living semi-independently, and that ends up being the best option for him to do so.  So, I guess you could say that the 'When' is both right now, and moving indefinitely into our future.

BigJ- and L- only have until the end of July to secure a house, because they have to Close by the beginning of October.

WHERE:
If you are willing, donations send through PayPal as a friends-and-family style payment would go even further than donations sent through this GoFundMe page, because then nothing would be lost to processing fees.  Our PayPal account is linked with the butterflyrosecreations@gmail.com email address.  If we recieve any donations in that manner, I will be unable to alter the goal-tracker here, but I will update elsewhere with the grateful information.  We can also provide a mailing address for checks, if need be.

WHY:
Why donate to us?  Because being able to grow old in a house means something different when you KNOW a wheelchair is waiting for you, and won't even be waiting until you're all that old.  (In fact I have one waiting, that already gets used occasionally.)  Because being able to take better care of my health -- directly, by avoiding things like stairs that just degenerate my joints faster, and indirectly, by doing things like being able to pay for more bilateral lumbar spine nerve blocks because we're saving money not having to rent -- means I might be able to delay constant use of the chair for who knows how many extra years, and in the meantime my having improved health both now and later means that my husband and son can have improved health both now and later, as well.  Because my son is the most amazing human I know, and who knows how much farther he could go if we had more freedom to support his thriving?!  Because my husband has done everything humanly possible to take care of us, and has felt bad about it because without help, it sometimes just can't do 'enough'.  Because we miss being able to be in the position to help others more, and this is part of how we get back there.

We have stubbornly resisted asking for help until now, although we hold nothing back in our gratitude, if any is offered.

Anything would help.  Our family is available to answer any questions you might have, as long as our computer keeps working and we can access your questions to begin with. Thank you so much for your time and consideration.  We've been struggling for so long to survive.  We want so badly to have a home to truly LIVE in.

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Donations (0)

  • Anonymous 
    • 20 $ 
    • 1 mo
  • Barbara Warren 
    • 100 $ 
    • 3 mos
  • Anonymous 
    • 50 $ 
    • 3 mos
  • Anonymous 
    • 75 $ 
    • 3 mos
  • Anonymous 
    • 25 $ 
    • 3 mos

Organizer 

Leslie O'Donnell 
Organizer
Camillus, NY
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