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Ethan's funds for autism services

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Hi everyone, so after a couple months of trying all other alternatives, we have decided to start this fundraiser for our son Ethan, because we dont know what else to do to get help for him. We have reached out and had meetings with our MLA twice, Autism Nova Scotia, Chief Medical Officer, and called lawyers. No one will call us back to direct us to relevant resources, or help us with the help we need.  Our local children's charity In Nova Scotia through Superstore has now redirected their charity work from needs of children with disabilities ( iPads, fences, service dogs, ramps, wheelchairs, vehicles etc.) to nutrition and nutrition programs in school systems.  There has been no alternative option set up to replace that valuable service yet. So after years of waiting patiently and months of fighting hard for services and support, during our most recent meeting with our MLA we realized we have to do our own fundraising. So here we are.   We have 3 children, 2 on the autism specturm, our son Ethan is 8 years old and he is severe on the autism spectrum / non verbal, PICA, flight risk etc.. and since his diagnoses we as most parents in our situation are left on our own to figure it all out.   Since the beginning we understood the wait times, and to be patient, "everyone will get help". But. After 6 years of waiting and not being able to get anywhere we had to realize help isn't coming from the main stream.  We didnt realize theres no coverage really for the treatments, therapies  and supports my son requires or what is traditonally recommended, let alone the actual medical attention he truly requires Unless you are rich and well connected, you and your child with ASD are going without accurate information, let alone assistance. The recommended treatments and therapies suggested by professionals come out to be $3-5 million dollars over a child's lifetime.    Our son is a flight risk and constantly putting himself in danger. We have no quality of life because we have to watch him 24/7 ( like you would a small toddler)  We have been trying to get help building a fence in a small area of our yard so our son can play safely.  He constantly tries to run, hes only getting bigger and faster. A fence and gates would offer a buffer to potentially save his life if he did manage to get out, or by us unnoticed.  We do what we can to being able to afford all these needs plus the needs of life so we did install new locks on our doors but theres more he needs. We have also been trying to apply for a service dog through the non profits for almost 7 years and cant even get him on the waiting lists. A service dog is something Ethan desperately needs.   We have also been advocating for more funding for us to acquire private speech therapy, which has gone no where.   These things would change everything for him and us.      Ethans life is hard, he has alot of challenges, and raising him is different then most children. It's hard to do when we cant give him what he needs to be healthy, safe and recover. Things like fences and service dogs and speech therapy exist to make the lifes of kids like my son safer, better and lives like mine a little less stressful. We can't access them, and  we are very worried about Ethan, even though we got the extra locks installed recently.   We are as well scared, because; if no one wants to help an adorable 8 year old child, certainly he is going to be dismissed as an adult.   Ethan is almost 9 and we have less then 10 years until hes considered an adult, and get him as ready as we can. To be honest, Shannons health issues with cancer, and around it's recovery, having the heart condition which took her mom at 57 and on going stresses, we dont know how long we are going to maintain the pace we are before needing to direct energies back onto Shannon.  We are so busy being Ethans bodyguard, speech therapist, doctor, nurse, technicians and we stopped working 6 years ago to help him and deal with cancer. (Shannon is considered no evidence of disease right now, so that's great :) )  We dont make alot, and anything extra goes to our children.   After working with Ethan for this amount of time and having limited sucess in behavior modifications, we explored and found out our water has toxic levels of arsenic. Ethan also has toxic levels of arsenic in his system. (doctor ordered provincially run lab tests) No assistance medically by the province in the past year in spite of being arsenic poisoned and this is with us reaching out and demanding help from The Chief Medical officer in Nova Scotia. We implemented biomedical therapy, and he has started speaking and recovering to a limited degree after treating him independently.  We want to encourage, and pursue this breakthrough because We were told he would never speak.  However, affording his biomedical treatments along with speech therapy isn't something we are able to do successfully. We do whatever we can afford, but Ethan needs so much.  We were sad to learn that this past year in school he only received 17 visits with the school board speech pathology team. (Ethan is supposed to have at least weekly appointments)  A non verbal child showing signs of becoming verbal at eight is not typical of diagnosis and we had hoped everyone would jump on this.  a Ethan has received zero speech therapy, or any support throughout the summer months aside from what we can afford to get for him and zero speech therapy sessions so far this school year. We do a great job of helping him learn to speak, and we have given up our lives and careers to do so ... We can't help but wonder where would he be if he would get the full services and supports suggested for children with our sons diagnosis, and provided by a professional. Not just his parents.  Imagine where he would be!   Money raised from this fundraiser will all go directly to Ethan and his various needs.   The goal is to get him his fence, his service dog, on going weekly speech therapy, his biomedical needs covered, and our water fixed.   We have eliminated our well as a primary source of water of course. The second we found out it was bad. We still have to bathe, do dishes and laundry in toxic water.   If we let the kids use water toys and kiddie pool it also uses our well water which is fine for anyone that knows not to drink it but Ethan cannot help but still try to drink it, in the tub or outside playing it's a real struggle to tell him "No" and to not drink water as that ultimately makes no sense to everything I told him so far in life.  He should just be able to be a kid and drink water at our house, water is supposed to be safe and accessible.  We have brought the water issue and plea for help there to our MLA as well but nothing in response.    If this fundraiser surpasses those mentioned needs of Ethans, then I will be using the remaining funds to start a nonprofit/charity to replace the one that's no longer here and help other autism families in Nova Scotia. Perhaps the maritimes maybe even the country/world!!!  ( who knows how far this could go)   Every child should be safe. Children on the autism spectrum, especially the severe end, needs to be safe and secure.    Please help us help Ethan be safe, healthy and learn even more speech! Let's get him talking!   Thank you so much.  Andrew & Shannon

Donations 

  • Donna Koscica
    • $90
    • 5 yrs

Organizer

Shannon Mosher
Organizer
Waverley, NS

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