Challenges over the years in finding suitable supports:
Between 2015 - 2019 a various support services were put in place and didnt work out because of either inconsistent service or workers not happy to work with Matthew in particular. I will not disclose these services, because i do think they are good services, however just did not suit the families needs.
Daniel:
Daniel was not a real problem and all the support services got on well with Daniel, however the challenge for me was Daniel was having the meltdowns at home, and as the years went on, he became more and more challenging. Daniel is a very loved and likeable young man who got on well with everyone in his company. He was afforded the chances to go away for long weekends with a number of groups, and the school from an early age, and this is why Daniel is in the postion he is now.
Matthew:
Matthew is a lot harder to deal with. Where Daniel was very hard for me in the house and good for other people, Matthew is the opposite way around, He is Challenging when he is out of the house and with other people, however at home he's settled, until Daniel started having meltdowns and Matthew would become very scared of Daniel and cling into me.
It was identified by Social work that both boys would not benefit from respite care away from me at the start of 2014/15 because they both needed the assurances from me. However i found it very challenging and constantly asked social work for additional support in helping me, however nothing came from this and i was expected to just get on and deal with the situations. My own health has suffered over the years where i had to give up a number of personal appointments .
Today being 20th May 2022 - yet another service provider has advised me that they are unable to cope with Matthews behaviours and i have been advised in an email that they are now unable to provide any sort of support to us. This now leaves us with no support and we are now only a few weeks away from the school summer holidays. This is where i really need the support the most
It is proving to be very challenging to find the right support for Matthew. Matthew does come with a number of past traumas along with the added issues that Kleeftra syndrome have.