A desperate father and special need family in crisis

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A desperate father and special need family in crisis

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Hello,
My name is Nick and I come to everyone begging for help in what will probably be a hopeless attempt, however I have no cards left to pull from the deck.

I am a father to 3 beautiful kids and a husband to my amazing wife. My youngest is 3 year old little girl who I full heartedly believe will rule the world one day but probably has one of the worst cases of ADHD I have ever seen and is about as graceful as a house fly. From the moment she opens her eyes to the moment they close at night, she is like a a squirrel on speed. Nobody can match this little girls energy and can be very exhausting most days. She also bright, caring, accepting, motivated and strong.
My middle child is 6 and is very brilliant but has some issues. He has what I believe is called echolalia and tourette syndrome as well as Autism. He repeats everything he says about 10 to 20 times in a row....over and over and over and over. His meltdowns are extreme and often. His needs are many but quite often gets overlooked as the middle child with high expectations because he is so brilliant. He learned to read before the age of 3. He's memorized the Russian and greek alphabet and started learning geometry at the age of 4. He can count up to 1 deceptillian, I believe it is lol. He is such a sweet boy but is pretty high maintenance and has no outlet to his trapped life besides screen time.

Then there's my oldest. Levi Ivan Edward Crosby Nolet. 10 years of age. If you live in Chatham Kent Ontario Canada, then you probably know who he is. He has a smile and personality that could light up the world and a complex so deep that his mind has been lost in the abyss. I honestly could right an essay on our struggles but more so, a novel on Levi's struggles since conception.
Levi is a non verbal level 3 ASD child who faces many struggles. He was literally, metaphorically and ironically brought in this world with a cord around his neck. He suffered brain damage as a newborn from birth trauma and also was jaundis with, what looked like, an almost broken foot that was black and blue. As time moved forward, we had several new diagnosis. Autism, oppositional defiance disorder, hypotonia, very poor eye sight, white matter brain loss, epilepsy and my personal favorite, bi latteral hearing loss which rendered him completely deaf. Talk about being dealt a crappy hand. He has gone through almost every therapist and specialist you can think of.
In 2016 I accounted more than 250 appointments on our schedule calender. 250 appointments!!!! That is not even including our own appointments. Needless to say, we have had busy life since 2014.

Fast forward to today. We are secluded and imprisoned in our own home, if you want to call it that. 3 kids with, 1 in particular, extremely high needs. No village to turn to, no family or friends capable of helping out. We are stuck! Surrounded by a concrete driveway and parking lot in a place festering with mold behind the walls. We keep a clean and somewhat organized house but it's outdated and full of allergens and bacteria we can't keep up with. Levi has made sure of it!

My 10 year old is a gentle giant. I use that phrase quite literally. He's 5 foot 9, 210 pounds with a size 13 shoe. Still 8 years away from adult hood. He wouldn't hurt a fly physically but is capable of such psychological warfare, one couldn't fathom to comprehend. He is completely non verbal and communicates in a way that makes your blood boil yet makes your stomach sink and your heart hurt for him. Destruction and anger is all he seems to know lately and why wouldn't he!? Hardly mobile, can't see very good, can't talk to anyone or even hear what they have to say. He has no sense of freedom, has no idea what the word means because he has no idea the word exists; about as much as any other word in the english dictionary. His language is destroy, pee and fecal smear until someone (parents) figures out what's bothering him. Imagine going through early stage puberty with all the hightened emotions and feelings, mix autism and being deaf in to the mix and not being able to express your concerns, feelings and questions. My poor boy. Confined to a world he doesn't understand and doesn't understand him. Trapped in his own state of consciousness and curiosity.

We are all trapped! The restrictions surrounding his life restrict our own. Levi's physical limitations from having brain damage, poor eye sight and hypotonia make it so he can't run, climb, stand for long periods of time, go down steps without difficulty; his inability to hear makes it difficult to take him into places that could be considered unsafe as we can not tell him the dangers involved. His epilepsy makes it so we can't be more than a few kms away from him with the little bit of outside help we get from poorly operated respite service that cut off overnight care over 5 years ago. We can't take him to the beach or most bodies of water because he is not that strong of a swimmer as much as he might thinks he is. His curious nature encourages him to see how far the body of water goes and how deep. Death trap!! This is unfortunate because swimming is his passion and one of the very few things he enjoys and is getting better at.
His incontinence and bowel problems means every half hour ( still in adult diapers) he needs his butt changed. The protective underwear isn't very protective. 9 out of 10 diapers leaks through so going to public places results in messes one should not have to worry about when going out somewhere. We buy him probably 4 mattresses a year and about 25 mattress protectors that accompanies them. We are trapped!! The little bit of time we do get out, we are seperated with turn taking. 1 parent to 1 child as all the kids have their own limitations and needs. We can not do anything as a family, or very rarely. When we do, it results in catastrophic meltdowns from both my autistic boys ending in exhaustion and regret. We can't trust them to play by themselves outside in our barron wasteland of a yard because they don't have a sense of danger and we live in a neighborhood full of bullies and street folk. I could tell you stories that would make your jaw drop but I don't think you have that much time to read them.

The destruction

As you can see from some of the pictures posted, my sons room is a danger zone. I replaced the ceiling 3 times after he's ripped it down, then proceeded to peel the drywall thereafter. I have had to glue all the receptacles as he has almost set my house on fire twice by ripping them from the wall. Replaced the paneling twice in the basement and we are currently in the process of drywalling the whole basement. He's has flooded our place in the middle of the night about 6 times, very cleverly I might add. Clogging the sink with his own feces filled diapers. Taking lids off totes and placing them under the faucet etc. Broken toys, tvs, tablets, furniture, every baseboard in the basement, house siding, floor boards, cupboards, .....everything. You name any house hold item and he probably broken 1 or more....and I mean everything. We have locks on most things in our house. This prevents my other 2 children to live their life. They lash out daily because of lack of attention and constant limitations and restrictions. It breaks my heart that my kids have to endure a life of confinement, solidarity and high a anxiety household.

My wife and I are very respectable people. Did all the right things in life. Went to school,fully licensed, volunteered places, help friends and family whenever we can, you know, the usual good Samaritans. All our time is focused on the never ending needs of our disabled children. We haven't set an alarm clock in over 10 years. We sleep maybe 5 hours a night on average if we are lucky. Every morning, and I mean EVERY morning we wake up to a poop mess smeared all over walls, blankets, sheets, couch, floor and our child. EVERY MORNING! I'ts now just part of our routine.

My wife has recently had to give up her job and put her career on hold. She couldn't commit herself to a full time job to an expanding business that needed her to be availabe all week for 8 hour shifts. As any committed and good mother would, she needed to be home for her children more than she needed to be in office for a job. Family first, right? Why not both? The answer lies with our government financing ( or lack there of...), the federal and provincial budget cuts and the lack luster support system our vulnerable community gets. We are not the only family that is suffering and this saddens me knowing someone else and their children have to go through this as well. That being said, this summer look to the Toronto Star for a news peice on our family and the struggles we, and others like us, have to face because of our failing system. We are going public and it won't stop there!!

Guys!!! I can't express how hopeless things feel. We gave all sunk into such a deep state of depression that as a husband, it feels I failed my wife and my children. I am the father and feel I am here to fix whatever needs to be fixed and give my family everything they deserve. Even with an incredible job, I'm still broke and broken at the same time. Most moments I feel like an empty shell who is nothing but dead inside but mask it with a smile and sense of humor most people can't decipher. Our life is stuck in a pit of despair and hopelessness.

Expenses and the autism diet

Almsot 4000 a month in groceries and diapers!!! Car payments, insurance for 2 vehicles which we need since our son was kicked off from riding the school bus indefinitely. Our bills are enormous every month, parellelled with the autistic need of excessive utility usage. Mix in broken electronic replacements, gas and rent...yes renting the place my son has single handedly destroyed. We went through 14 container of laundry detergent last month 100 kitchen garbage bags. My wife has done 2 loads of laundry every day for years for just sheets and blankets alone. Everyday!!! Add another 2 load for just regular clothing. The expenses associated with autism are astronomical and unless your family makes six figures off one income, you are screwed as a family in this economy.

CONCLUSION

We need a home! A place with a backyard where my kids can have fun and explore without asking to go out and without the dangers and need to travel to find a sense of peace. A place where my kids can be kids and not have to live in unsanitary conditions. A place where we can have hobbies and a sense of freedom and sanctuary. A place we can call home.

I can't do it alone. I need your help!

We have the credit, we have the income but we just can not save for the down payment. We are good hard working people and attentive parents. I'm not asking for help for us but help for our kids. They deserve the world and it breaks my heart to know I can't give it to them; not without help.

I am asking for a lot. $ 20000 dollars!!! Enough to secure a down payment on a small house with a big backyard.

My kids are unhappy here and our souls are being crushed. We all know the definition of insanity, "Nick's household". It's groundhog day the directors cut! Living everyday knowing it is going to be exactly like the day before. My poor kids have to live it .

Please I am hoping this reaches 20 000 people who are willing to donate 1 dollar a peice...just one dollar.

I am always there first person to donate to a good cause or lend money without expecting it back or anything in return. I am begging everyone to help me out. If you can't afford a dollar, I completely understand why, with the way our economy is. All I ask is that you share this with someone who you think can.

Please

Thank you so much for taking the time to read our story and God bless

Co-organizers2

Nicholas Purves
Organizer
Chatham, ON

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