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Chair lift for disabled mom & Autistic child

$981 of $5,000 goal

Raised by 19 people in 9 months

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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We heard back from the bank that our mortgage got through the underwriter stage, so thus far, everything is still on track for us getting our house just barely in time! Unfortunately, we're still only around 1/3 of the way to the minimum of what we need to make that house safe for me to live and take care of Jamie in. I have about a month and a half to raise around another $2,000 for a staircase chair lift, the first vital piece of accessibility equipment the house needs. All other avenues of aid we've explored either can't/won't help*, or they only MIGHT help, but wouldn't be able to until a long time past when we need this in place.

* Some think we should've just moved into a single-story house, not caring that we used up most of the year we had for this process trying to accomplish just that, but we couldn't find any in decent enough condition that the bank would agree to finance them....or an apartment, which was not a viable option for us because Jamie with his Autism requires a single-family home so that he can control his sensory environment.

All donations received through this fund-raiser funnel directly into a separate bank account earmarked for this purpose alone, as they come in. That means that every little bit really does help, even if we don't meet a specific financial goal at a specific time. Donations through PayPal Family & Friends (butterflyrosecreations@gmail.com) are even better, because then we don't lose anything to fees. Whatever you can do, whatever you wish you could do, we thank you.
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Slightly earlier this evening, after posting the last update here and on facebook, I received a less than helpful message. It was the kind of message that makes me say that I've found one of the best ways to learn just how uncaring a person can be, is to wait for them to rationalize why they shouldn't have to care in the first place. I was going to post the identity-masked screenshot of the message here, but GoFundMe's image formatting requirements tend to make that challenging. Anyway, the message said, "Instead of trying to get money from other people for your "medical needs", why dont you just spend less on what you probably self-medicate with. I dont known a single person that has the kinds of things to complain about you say you live with, that aint wasting thousands on booze, pot, or whatever."

Actually, the only alcohol ever purchased by this household is a bottle of wine twice a year to cook my favorite lamb dish for my birthday and our wedding anniversary, and a bottle of Bailey's once a year to use in baking. We don't drink at all. I couldn't if I wanted to, because combining alcohol with some of my medications would be highly counterproductive to that special needs parenting mantra of, "Well, I simply can never die." That said, I don't want to drink. One of the reasons I don't want to is that, as so many people constantly remind me, I have 'so many reasons to'. Even if I wasn't genetically predisposed towards alcoholism, starting to drink when you have too many reasons to not want to stop, strikes me as an exceedingly bad idea.

Also, we don't smoke....anything. No pot in any form is consumed in this household. Nope, not even though I could easily get a medical script for it. I'm allergic, as it happens.

Wanna try again? Oh that's right, the, "...Or whatever." Well, there's what I'm prescribed for my chronic pain, the Arthritis medication for my mobility, the birth control pill I actually take to control my cystic disorder -- oh wait, but those don't count as 'self-medicating'. Ohhhhhhh I know, you must mean the chocolate! Yeah, hubby brings home a bag of Dove Promises once a month. My son bought me a dozen Lindt Lindor truffles for my birthday back in April, too....I've been rationing them and still have two, though.

Gee, I guess I *can't* save money for a staircase chair lift by not spending it on getting drunk, high, or 'whatever', after all. Y'know, since I don't spend any money on that to begin with. (I'd say you DO know someone who has lived through abuse, lives with chronic pain and fatigue, raises a special needs child, etc., and all without trying to drown it out chemically....admittedly, something that very few people are able to do....except clearly, you DON'T know me.) But hey, maybe *you* could put some of your 'self-medication' budget towards what doctors all agree that I need for my health. No? I didn't think so.

That's fine. We all prioritize whatever we have to work with, for our own reasons. I didn't plan to shame you for your choices, but don't try to shame ME for your choices, either.
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I know, I'm overdue for an update again. I've spent most of my online time recently helping someone else out. Eniways...

THE HOUSE UPDATE!

At this point, we have a mortgage for house #4!!! We've done the sending and re-sending of records needed by the banks, lawyers and agents, and at this point there is nothing much we can do except wait, feel paranoid, and try to take care of all the tangential issues. We're not going to feel secure until we've done the Final Walk-Through and Closed, and have the deed and the keys in our hands....but there are no more steps for us to take in direct relation to the new house until then, and we're finally at a point where it seems *in*advisable to keep spending time looking for back-up houses.

Since we have a mortgage for that particular property now, we're also at a point where it's possible to make some headway with more of the tangential issues. Some things require that we already own the house, but some things we can kick-start with proof that we should end up owning the house.

Unfortunately, the banks feel that the initially contracted Close date of the end of August is unrealistic, and Sept 20th is more like it. They will try to rush things and get them set earlier, but they could just as easily run late, which means we need to extend our overlapping lease (and utilities) here through the end of October to be safer, and make sure that we have time to arrange help from friends, prepare the new property, book a moving truck, arrange help from friends, actually move, finish cleaning up this place, etc. Maybe moving trucks are cheaper in Oct., since most people don't want to move then, and that will help offset the cost of the extended overlap? Unfortunately, while more time to pack sounds good, the delay does complicate other things, such as the fact that home renovation stuff appears to all be on sale during the summer (the biggest sales on things we know we need right away, like new flooring, all ending before we can start doing anything in relation to them), and oh yes, now there is ZERO chance of being settled into the new school system, before the school year begins.

I finally completed the first round of my game of phone tag with the Director of SpecEd, this afternoon. There is a lot to navigate, between registering a transferring student before we're technically living there, so that the school can prepare for accommodating him, meeting to discuss the IEP and any changes needed relative to differences between their program and the one in our current system, meeting with the staff to teach them about how Jamie's brain works, and, as noted, trying to figure out how to deal with the fact that we won't be settled in until AFTER the school year starts.

Obviously, on top of packing, trying to organize everything and everyone for a transition we have no set time for yet, dealing with the schools, and all that, I have to keep attempting to fund-raise, in addition to looking into other potential venues of support when it comes to making the new house accessible. Most of the donations seem to have dried up, which makes us no less grateful for the help we already received, but is disconcerting since we're still only just over 1/3 of the way to our goal for being able to purchase a staircase chair lift for my safety.

This is as close as we can get to KNOWING we have a house that needs this equipment installed in it, before we are already living in the house that needs the equipment installed in it, for us to safely live there. My family would be grateful for any extent or form of help with fund-raising that is in within anyone's capacity, whether that is continuing to help with algorithmic visibility and outreach, whatever dollars you can spare here and there, or....well, we are open to ideas! Unfortunately, because of James having to work so much, and me having everything else to wrangle mostly on my own, along with taking care of Jamie and trying not to ignore my health too counterproductively, there are a lot of things that friends do to fund-raise that just aren't options for me right now. I can't take new art commissions (or even complete existing ones) until I have a functional studio/workspace set back up at the new place. I can't get involved in something and collect sponsors. I can't get Jamie's photography print sales or our t-shirt design sales set up. I can't organize and host a big sale/event/raffle/whoknowswhat. It is, unfortunately, a lot easier to think of things I CAN'T do.
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As of this evening, we have a signed (by us and them) addendum to our contract with the sellers of the house. This relates to the things on the Inspection that they agree to take care of before the date of Close, as well as their agreement to a $1,200 credit towards our Closing Costs, to compensate us for the need to purchase a new furnace, to actually have the kind of furnace the house listing said was there.

James is going to try making an appointment with our bank for Wednesday before heading to work, while kiddo is at his dental/orthodontic appointment, so that he can give our home loan agent a copy of the updated contract and formally apply for the actual mortgage. At the same time, we're hoping he can set up a separate or partitioned savings account specifically for the donations to this fund-raiser to channel directly into, so they won't get mixed in with what's used for anything else in this process.

Once we do that, the bank arranges its own assessment (their version of an Inspection), and then there's nothing we can do except send more copies of financial-related paperwork as requested, and wait, as the banks, agents and lawyers do their thing....until it's time for our final walk-through. (Also, less formally, we hope to communicate with the sellers just to exchange other kinds of information, like what is already planted on the property and what kind of care it wants, their established maintenance schedule for the hot tub, pool, and utility appliances, etc.) Technically we're not in the clear until we have the deed and the keys, but once we get past the meeting with the bank, we're supposed to be able to count on the fact that, unless something catastrophic happens (oh please no), the house will be ours on or near the anticipated date of Closing that's written into the contract.

Technically the bank itself could require the Closing Date to be pushed, if they don't think they'll have quite enough time for their part of the process -- apparently the agents and lawyers think the original date on the contract is still work-able -- so we're waiting until we've gotten through this step with the bank, before we try moving forward with any of our tangential processes. That includes discussing timing....we do aim for at least a one month overlap between properties, to give us more time to prepare the new house, move, and clean up the rental house....with our landlords. That includes seeing if we can recruit help from friends that can help us with various aspects of preparing the new house (redoing the floors, painting, etc....the things MUCH harder to do after you've moved things in) and moving, figuring out when our best bet will be to arrange days off for James and renting a truck for the major parts of the move, figuring out when to arrange switching our postal address and records of such, utilities, etc. That includes my discussing things with the new school system -- Jamie's transfer as a student, his IEP and if any changes need to be made to it in relation to differences between their program options and his previous school, opportunities to meet with the staff to teach them about his brain, show him the school, etc., and also how to navigate the fact that at this point we won't be able to be moved before the new school year begins. That also includes starting the application process with programs that even MIGHT help with things like building ramps, insurance, etc. Some won't let us begin the process until the house is officially ours, but some will let us kick-start things once we cross that fairly-reliable, aforementioned line. It even includes being less casual about our research into everything from comp-shopping flooring options and HVAC options to double checking on what companies will even consider insuring the house while that old knob-and-tube wiring is still in the attic....and, hunting down another electrician, since we didn't jive with the first one.

Of course, it also needs to include really picking up the speed with packing. Whooooo boy...
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$981 of $5,000 goal

Raised by 19 people in 9 months
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BW
$100
Barbara Warren
1 month ago
$50
Anonymous
1 month ago
$75
Anonymous
1 month ago
$25
Anonymous
2 months ago
$25
Erik Kjellquist
2 months ago
$6
Sharon Tokar
7 months ago
$25
Jenna Metalsome
7 months ago
LG
$50
Lois Gurnsey
8 months ago
$25
John Harnois
8 months ago
$25
Mike Meagher
8 months ago
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