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100,000

So this happened and to say we are truly devastated is an understatement. So as you all know my beautiful boys Ryan and Kyle have Autism Spectrum Disorder, a global learning disability, auto immune disease and a list of health problems generated by this, they are pre verbal. We spend a lot of our days in doctors surgeries, attending consultants appointments or in a&e. This doesn’t include speech therapy, occupational therapy or physio therapy. The boys don’t sleep much so a lot of our days start at 3am in the morning. Since the boys diagnosis in September 2013 they were under the Home tuition scheme from the department of Education and in September 2017 a school placement became available for them in a asd class in a mainstream school unfortunately it was the start of what can only be explained as a nightmare for us. The school was not appropriate for the boys they couldn’t deal with their health difficulties even the simplest of ones like a temperature which Kyle developed one day, they put them in a room that was almost 30 degrees dressed him in his hat and coat covered him in a blanket and then called me. As a result of this he had a febrile convulsion and was rushed by me to hospital. That was just one incident they had several others including unsupervised falls resulting in cuts and bruises and also no communication system in place to deal with pre verbal children so they tried to guess what Ryan and Kyle needed. We took them out of the school as they were regressing pretty fast and this was heartbreaking to see as we put so much in to them ourselves. We had to fight with the department of Education and the school from September 2017 and ended up having to get legal representation to get our home tuition back, this didn’t happen until November 2018. So our children were without any education or resources for over a year. This left myself and Darren also without any help. The boys are under St. Michaels house for services which we also got no support from as when your child gets a school placement there support also stops so no speech occupational or physio therapy for them. It takes two people to look after Ryan and Kyle I could not leave the house to even go for a walk on my own with them as they are a flight risk and have no understanding of danger, never mind dealing with all there health issues. As a result of this Darren missed so much time in work , my health was deteriorating and most weeks we had hardly no income as Darren was at home. Everything we now had to do for Ryan and Kyle had to be paid for by us any therapies or treatment. It left us unable to pay our full mortgage for over a year and along with fighting for everything for our boys we were now fighting the bank. Anyway we lost our fight and the bank won our house is now up for sale and if we don’t sell it by March the bank will repossess it. The problem for us is our house has a little positive equity in it but not enough to buy another house and obviously as we got in to arrears with the mortgage not another lending company in the country will touch us with a small mortgage to buy another property. This home is all Ryan and Kyle have ever known and if you know anything about Autism you will understand that routine and familiarity is key. Imagine yourself  you have no words but knowing that you can cope because for your whole life you have done the same thing, so you know where the bathroom is and your bedroom you know how to get a drink as it’s always kept in the same place, you know where all your favorite toys are and your clothes to get dressed, and you know every station on the tv and you need not worry because your favorite safe spot is still tucked away in ur room for when you feel frightened or need some quiet time. You know where we are going in the car and all your favorite shops and of course all the amazing staff that have taken the time out of their day to get to know you over years and can now sign to say hello to you. Now imagine what it’s like to wake up one day and it’s all gone, everything and you have no words to ask why, your Mam and Dad will try to explain with pictures and familiar things but no one really knows what your thinking so what will happen next ....Regression that’s what will happen. I’m not posting this for sympathy but for awareness for other parents like us who always put their very special children first, and also for ideas maybe there is something I don’t t know or haven’t thought of or maybe you know someone who can help us. And yes I have been to MABs and got in touch by email with  the minister for disabilities Finian Mc Garth and a very unsympathetic lady called me and asked why did I send that email to the minister when apparently I’m not in his constituency? This man has a daughter with special needs you would think he could have taken time out of his day for a ten minute conversation with me but apparently not. The nearest place I can find a house for us is  Carlow, Darren and George would still have to travel to work every day in Dublin. This whole community knows Ryan and Kyle and on the many occasions I have to ring an ambulance for one of them ,I always have a neighbor who knows and understands them to stay with the other till help arrives. I will leave it at this the boys will never be able to come back to this area when we leave as all they will only  understand and want to come home, this means that I can never even bring them to visit my mam their Nana whom they adore and she is housebound. I thought about doing a fundraising page but who in this day and age has money to be giving away. Please share my post and let other people know so this doesn’t happen to them. We as a family are broken
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Donations 

  • Nicola Dempsey
    • €40 
    • 2 yrs
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Organizer and beneficiary

Kay Noonan
Organizer
Gillian Bolger
Beneficiary

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