Exhausted and frustrated mum of challenging autistic child

As a service user of Braddan hub for past 10 plus years .. this is [was] a purpose built respite center for  children with special needs .it provided 24  hour 7 day a week respite to the most vulnerable and challenging children ..it was and excellent service and a life saver to parents like myself ..Until one day about 3 years ago along came Someone who decided it worked too well .. let’s mess it all up and that’s what they did !  I was informed that my sons respite  provision would b more tailored to his specific needs ... my child’s is non verbal autistic his senses r easily overwhelmed by sights  and  sounds and he screams and self harms to drown out the sensory stimuli . simple sounds like a child’s crying or the car indicator drive him crazy . The proposed  care plan was that his needs would be individualy met ie. taken swimming or on the trains trams /buses out with sailing for disabled ... the activities he really enjoys .. Not once has this been provided ... yes he has  been taken out with other kids to activies at Craigneish to lunch in cafes all normal things but not to [name redacted].  He doesn’t eat  doesn’t like the smells  ... believe me it would not have been fun for the other kids as [name redacted] screamed ant trashed himself!           Meanwhile back at Braddan hub, the top floor above the children’s area had been extensively extended into high spec office space ..  the sound of foot noise  above is unacceptable th any able bodied person ... but alas it’s deemed ok for the Autistic kids !!     As if not enough ,  on the ground floor  a number of rooms have been converted into bespoke clinic space with high spec fixtures and fittings so out patients clinics run along side respite provision !!   There used to be a small but reasonably kitted out sensory room .. my son loved it .. most of the equipment got broken/ mis lead during the extensive renovations .. there are no funds to re equip the sensory room.. the staff r fundraising to re kit it !!!   The children who used to have over nite provision  r transported by the dept by car ,driver and chaperone all the way to Ramsey and returned by driver and chaperone to school next morning ..  I am at loss to see the benefits  to these vulnerable kids and their exhausted families .. I took my son to Braddan respite on Monday of race week the roads were closed .. no big deal  the unit was stifling hot .. all doors locked and closed obviously .. the directive was that no kids were to b taken out on closed roads .. fair enough ..  the kids were outside in tiny cramped unusable garden space with big bouncy castle pumping out more  heat !!  There were staff in offices above the kids heads and a lot of foot noise ... There was also a out patients clinic on going as well  more foot fall !!   Did I mention that the children’s small area is in the middle of building opposite the only door in ,through which all foot fall for whole building trot through !! I was utterly furious and frustrated at the appalling provision for these vulnerable kids they deserve a lot better than this .. I took my son home again .. may I add that the fault clearly lies with social care poorly informed management not with the kind and patient front line staff who take the best care of our kids and I am grateful to them .MY Thanks to Mhk [name redacted] who done [their] best to highlight this 

Why the contribution is important

Special need s children don’t fit the one size fits all silo mentality .. millions of ££ are pumped into Social care every year sadly millions appear to just get wasted . Lessons never get learned . Consultations are endless but no-one  ever takes a blind bit of notice of what parents say  or need.. the  recommendations and the implementation of the reports are rarely in the interest of the kids .. 

 

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by ClairIOMGov on July 15, 2018 at 02:16PM

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