1. If this is your first time on BYC, we suggest you start with one of these three options:
    Raising Chickens Chicken Coops Join BYC
    If you're already a member of our community, click here to login & click here to learn what's new!

My Son is leaving home soon.

Discussion in 'Family Life - Stories, Pictures & Updates' started by oesdog, Oct 23, 2014.

  1. oesdog

    oesdog Chillin' With My Peeps

    3,444
    79
    234
    Jun 7, 2010
    Ireland
    Most of you know that I have a very handicapped son who is nearly 30yrs of age. We have been trying tog et him perminent care as we are getting older and he is getting more difficulet for us to look after and meet all of his ongoing needs.

    Well - honestly it has been like wading through glue to get this far. - I am not sure how adult services work in the US but here it is dead slow!

    This is crazy and I wanted to share it for some input from my BYC friends.

    Last time we met with Social services - they told us that our child could not stay longer than 2 hrs at the supported living unit we are trying to get him into because the unit cannot feed him? WHY? Because on his notes which they have not updated since he was about 9yrs old said he had to have his food minced up ( blended?) Anyhow this is total nonesence as I have been caring for him for nearly 30 yrs and he has not had blended food since he was a baby! He eats like everyone else only I have to be careful of certain things like you would for any toddler really. You knwo cut up food in managable chunks and not feed him anything that may cause an obstruction if he seizures etc. Other than this our boy loves normal living - he goes out for dinner and his respite center take him for chinese and all sorts. The day care has had him out for fish and chips and everything ( I know this as I have had to sign the parental concent forms.) I am darn sure they never took a blender.

    Anyhow we told them that our boy eats everything they are very keen to emphasise usually that we the parents are "the experts"! lol. This time they insisted he has his eating assessed! ( I found this a bit insulting as I have fed him good food for all of his life and not once has he ever choked on anything.) ANyhow they came today - we had to threaten them with legal action as they were going to put him on a waitng list that would take us into the new year! We got them out today. - 2 girls looked like they just dropped out of high school. One started to explain how to put on a nappy? Yeah right? Bet the girl has never had a baby let alone changed a near 30 yr old especially hard when he is bitting you in the head while your trying to put the dipper on in the middle of the night! - Then she started to tell me how to feed my son and what to seed him and how to chop it up and all that? I felt like slapping her face and throwing her out the door!

    The other girl that came was supposed to be a nurse. - I guess one of these new nurses we have who go to college a few years and think they know everything! At the meeting she said she was not qualified to take responsibility to tell the supported living unit how to feed our son and then 10 mins later told them they count give him his Jaffa cake biscuits only if they were cut into 1 cm cubes? - ( Either she is responsible or she isn;t ? Either she is trained or not?) Anyhow that aside supported living phoned up on Monday to say they would take him after day care for a few hours. He didn;t have some things with him extra dippers etc. So I dropped them off at the day care. - Once there I realised I had forgotten his Epistatus ( Epilepsy meds.) - I knew the day care had some of his meds there so I said to them to send it with him to the Supported living unit. They flat refussed ! This meant the lad went without his meds? Meaning in short that they didn;t care if he has a major seizure and dies in the bus or at the Supported living unit as long as he doesn;t choke to death on a Jaffa cake!

    I was so mad I sent a message with more meds the next day. I said those Meds were not to be removed from his bag (normally I would be a responsible parent and tellt ehm about Meds in bags etc for safety of other disabled. So they could lock the meds up) This time I said if the Meds are removed I would get a solicitor on the grounds that they have witheld life saving meds, failed to provide a duty of care and prevented my son from basic human rights to access his meds. After all they are perscribed to him NOT THE DAY CARE CENTRE - well they have now agreed to lock his bag up. SO they now have two loads of epilepsy drugs - one they keep in a cupboard and I guess stroke every now and again? What a wast of tax payers money.

    Well the little chlld nurse who came to the house today started a whole things about the day care not being able to sign out controlled drugs etc as it is "their policy!" naturally I tore her throat out and bashed her brocken body up and down the street ( In my mind of course!) - Hubby was a pathetic wast of space trying to maintain the peace by siding with the box ticking brigade! I was very mad indeed that thay could leave an epileptic boy with a history of status with heart failure without his meds because of a box ticking excersize! If our son had of had a seizure on the bus or at the supported living unit and his meds were not available ( because the Day care wanted them as an ornament! and were *** covering) Then what would have happened he could have been at risk certainly especially with his previous history of heart failure - Mental note - He has NEVER HAD A HISTORY OF CHOCKING OIN JAFFA CAKES! - UGH!!!!!!!!!

    Anyhow once they left of course had a big fall out with hubby. over his understand of the *** covering for begginers brigade! I was so mad I told him I didn;t care a hoot about their darn box ticking *** covering - I cared about OUR BOY and his right to have access to his lifesaving meds all of the time!

    So now I am stressed and have endured a day of these little jumped up teenagers telling me how to feed my son and even how to put a darn dipper on - DH doesn;t understand why I am Mad? They are only doing their job he says vainly as I sceem at him - that I am DOING MINE - LOOKING AFTER THE INTERESTS OF OUR CHILD! Not worrying about some child nurses arse! or a day care centres obsetion with holding onto other peoples meds like they are planninng to sell them on the back market!

    I need a cofffee - mentally tearing heads off and hiding the bodies in the chicken coop hoping the girls will eat the evidence!

    Oes [​IMG]ok rant over some one say something before my chickens get fed a big dinner!
     
  2. rrrmamma

    rrrmamma Chillin' With My Peeps

    599
    43
    143
    Jul 27, 2010
    New Concord,Ohio
    Oes, It is very frustrating and upsetting working with these kind of people. The older I get the younger the "experts" seem. I don't have any real answers for your dilemma, but my prayers are with you to find a solution. You must worry so much about how others will care for him when you have done all you can all of his life. Are there other alternative. Respite care and day care are not enough now. I hope you can find a solution soon.
    Deb
     
  3. wyoDreamer

    wyoDreamer Chillin' With My Peeps

    3,162
    236
    226
    Nov 10, 2010
    OES - I have no advise, I just wanted to give you a virtual hug. [​IMG]
    I have been following your trials and I am so sorry that you are going through all this.
     
  4. oesdog

    oesdog Chillin' With My Peeps

    3,444
    79
    234
    Jun 7, 2010
    Ireland
    Thanks for listening to the vent.
    I do get really upset and cross about how these folk treat us. It is really awful like a violation. Someone comming into your home after 27 yrs to "tell you how to feed your child and change his dippers?!" Some jumped up little kid straight out of uni with a degree and no common sense! Certainly NO respect for us at all. We are only told we are the experts when it suits them. I am frustrated and angry and very stressed out. DH and I are no longer able for all this now. The government here has closed the funding on home care. So everything goes through the local authority there is no options now. Without the funding it would be impossible to pay someone privately to come into our home and care for our boy. Also there are all those other things like our own privacy and having to train up and police check yet another person - Ohhhh let me think now am I actually going ot be able to "train anyone" since I can't FEED MY SON OR CHANGE HIS DIPPER WITHOUT INSTRUCTIONS FROM A 12YR OLD NURSE! OMG - still seething mad! We were told this would all be done by September! We still don't have the spinal surgery date for DH - UGH.
    They said early Autumn? It is now getting on for November and still nothing. I sure home the lad is sorted in supported living before the letter comes as I simply cannot cope with it all.
    I was out for lunch with DH and our boy on Thursday because the day care cancelled their bus so the wee man was home. While there in the paper was a story of a lady with a low grade Downs lad of 45yrs. She and her hubby had cared for him all his life and were now getting on for their 70s. She said she wished he had died when he was born. She went on to say how much she loved him and adored him but how his existence had so affected the family and every aspect of their lives. - I totally understand how she feels. Some folk were shocked when I said the same thing about our disabled twins. - Life would have been so different if they had died naturally when babies. We would have gone on to have more children though we would have grieved we would have come to terms with our loss! - This is just an ongoing nightmare that will last a lifetime. I so wanted to give that lady a hug for having the courage to voice what so many of us parents of the disabled feel. It is not that we don't love our kids it is that there is NO place for them in this world because the care provision is so bad the prospect of meeting all their lifelong needs is quite overwhelming. Parents are so left to cope very much alone and muppets like those above just add insults and open up wounds that should be left alone. They are not helpful at all. They are simply HURTFUL!

    Oes
     
    Last edited: Oct 24, 2014
    1 person likes this.
  5. donrae

    donrae Hopelessly Addicted Premium Member

    31,452
    3,522
    538
    Jun 18, 2010
    Southern Oregon
    [​IMG]

    [​IMG]

    and more

    [​IMG]
     
  6. Suzie

    Suzie Overrun With Chickens

    3,091
    622
    298
    Jul 9, 2009
    Auvergne
    OES...having read through this thread I am 100 per cent with you...

    I have witnessed the dereliction of duty of care in the UK...I have spoken to carers and asked them directly ...if this was you Mother, Husband, Child ...would you accept that this was acceptable for one of your own family ?

    SILENCE...is the response or lack of response...

    In this day and age it is sadly lacking that what is given out in the name of care is not fit for purpose...

    My heart aches for you...the odds are so stacked against us that do not accept the disgusting way that we and our families are treated by these so called professionals...I am sickened that it is Ok to treat vulnerable people in such a manner...it is about time that the UK woke up and listened to the people who are affected by the negligence and disrespect of the system that dictates that this is acceptable...unless of course it is their own family...

    Doctors bury their mistakes....

    Rant over!
     
  7. oesdog

    oesdog Chillin' With My Peeps

    3,444
    79
    234
    Jun 7, 2010
    Ireland
    Well it is so upsetting - my hubby says when you have a disabled child you have a disabled family! Now nearly 30 yrs on from when he first said that to me I know that what he said and predicted was apsolutely true.

    Since having the disabled twins we have had to fight for everything - once they reached adult services everything stopped! Once DH also became disabled it has become near impossible. Dh has had two heart attacks and stents fitted, we are also waiting on surgery on his spine which is collapsing and compramising his spinal cord. This means he often drops things without warning or falls because his arm, hand or hip lose feeling.

    We had folk here to look inot his own needs and so we asked about a chair lift for the stairs as DH has fallen down them more than once. - They fitted an extra hand rail but would not fit a stair lift, WHY? Because he is unsteady on his feet? - Surely if he was "steady on his feet" - HE WOULD NOT NEED A DARN STAIR LIFT! - Conclusion to this was that they would biuld him a £30,000 extention on the ground floor ( That would mean - it would be biult over our sons sensory garden!!!!) WHY????? Clearly we do not need more bedrooms - UGH???? Oh the other option was that they would "fit" a lift shaft in the middle of my living room? Like I need that kind of ornament to show off to my guests?

    A fellow came to fill out paperwork and he litteraly talked over DH - stupid questions like can he feed himself? take himself to the toilet? etc right infront of DH like he was not there. I stopped the ignorant idiot and said listen he might have difficulty with his movement but unlike our son HE IS NOT MENTALLY HANDICAPPED so just ask him he is sat right there!

    What a wast of tax payers money and what stupidity - We don't want an extension, we don't want our beautiful sensory garden destroyed - we want a STAIR LIFT!!!!!!!!!!! - Have to go private as ever and try to fund it ourselves - which is the way of everything here. Yes you can have things but only what they want not what you need! Once they gave me a bath aid that spent its entire lifetime in the attic because it did not "fit " our bath tub! We were given a chair for our boy that he could not sit in, a rolator for DH that was supposed to have been cleaned but had an old ladies tights inside? A chair that helps push you up to stand - that smelt of ciggeretts so bad and had burn marks on that I threw it in the garage and told them to come get the filthy thing because it was not comming in my house! Yes care in the UK is real bad - not like it used to be once, before we had a glut of imagrants overwhelming the health service.
     
    Last edited: Oct 30, 2014
  8. Chickerdoodle13

    Chickerdoodle13 The truth is out there...

    6,817
    316
    331
    Mar 5, 2007
    Phoenix, AZ
    I'm so sorry OES. My heart breaks for you every time I read your stories. You are a beautiful person for all you do. It definitely takes someone special to care for disabled children. It is even more difficult the less those children can do for themselves.

    My uncle was a severe schizophrenic and got worse as he got older. The system here in the US was no better than yours and getting him any kind of assistance was like getting blood from a rock. Then when we did get help, it would be sub par. Towards the end, it was looking like he was going to have a foot amputated due to an old injury, but there was no way he would be able to deal with that. He ended up passing away right before and while we were devastated, I do think everything happens for a reason. I was young when this happened, but it still hurt me to know he was suffering in life because our country is unwilling to give the help disabled adults need like they do for children.

    I really hope somethjg permanent comes through. You and your husband deserve a break, and doing that for your son would only prove to me your love for him!
     
  9. Suzie

    Suzie Overrun With Chickens

    3,091
    622
    298
    Jul 9, 2009
    Auvergne
    OES..

    I have not been back to the UK for 6 years now but when my severely disabled Mother was alive I applied to the local council for a grant...for a stair lift..it was supplied and fitted by Stannah engineers within three weeks of the grant paperwork being submitted to the council...surely Social Services can do something positive to help you out here...it's bad enough dealing with the great difficulties that we as our family carers have...without all the hassle of objectionable insensitive people to deal with in "authority"...

    Why should you have to pay privately for something that is your right ? A stair lift is a few thousand pounds...an extension ????? Crazy system! Stair lifts do have seat belts on them so there would be no problem if your Husband were unsteady on his feet...much safer than a hand rail on the stairs...

    I would speak with your Citizens Advice Bureau if you can't get any sense out of the council...they do have dedicated telephone numbers for disability needs...it may be worth a try!
     
  10. oesdog

    oesdog Chillin' With My Peeps

    3,444
    79
    234
    Jun 7, 2010
    Ireland
    Suzie He he - thanks for that but I guess you are not used to the way things are here. It is a post code lottery. My sister who lives on the uk mainland has MS and like your mother she was able to get a stair lift fitted! Great and she uses it all the time. However on the down side the powers that B where she lives won't fit disability handles to her doors so she cannot open the front door to let folk in (even her Dr!) and more worrying she cannot turn the handle to get out if there was a fire! They also would not "fit" a sink in her downstairs bathroom although it is ilegal to have to use the kitchen sink to wash after using the bathroom? When she tried to fight for the things that should be done they told her they would put her into a nursing home and stop her home care! Now she just gets upset. But still nothing gets achieved. Stupidly also her social services through her OT provided her with a thing that fits over the sides of plates and dishes so she can use a spoon to feed herself. When we asked our OT for one for our son we were told that we could buy one on the internet! It is crazy and nothing is equal here at all. We don't live on the UK mainland we live in N. Ireland (part of the UK) But we do not get what they get and they don't seem to be able to get some things we get. As my sister has MS and My mother had Polio ( now passed away) I know only too well the difference between Post codes. NO they do not supply stair lifts to anyone here it is their "polic" as if someone were to fall from them they say the compensation would cost them more than providing a downstairs extention?????? I DON'T WANT AN EXTENTION !!!!!!! Meanwhile Hubby struggles up and down stairs holding the banister which wont stop him falling and breaking his hip!

    Oes [​IMG]
     
    Last edited: Nov 3, 2014

BackYard Chickens is proudly sponsored by