[bekki1970]

Hi i'm  Bekki, im 38 married to richard and we have 4 boys tom 14 elliott 12 ewan 5 and harry 4. Ewan is at the moment diognosed with epilepsy and severe global development delay. Richard is in the army and spends a lot of time away so it has been my job to bring up the boys a lot of the time. We have had so much pain and heartache in ewans short 5 years, with trying to control his epilepsy to getting him statemented, and to now trying to handle his behaviour. He goes to a special school which is lovely and he has developed so well there. Although he has no sense of danger and  can become very aggressive they have done wonders, and with one on one constantly they are able to help him settle and learn to share etc. Yes they say he is hard work , of course they have the facilities and time to manage him.
At home its a different matter. Ewan will run away from the house if he can so every door is bolted, but with 3 other boys you can imagine the difficulty in following this through. I have now got to the point where i cant control ewan, on return from school he is running around smashing up the place and attacking harry constantly. He shows no willing to sit and do an activity , and i spend every moment running after him to protect the other kids, and what furniture i have left. I have been trying to fight for respite for 2 years. Social workers have come and gone , seeing how desperate we are, but they never follow it through. We now have one that says she understands and has done a core assesment, which is supposed to help us. I have had several breakdowns, all of which begging social services to help. I cannot give Ewan the one on one he needs whilst looking after the other kids and trying to be a housewife. All they have offered over the holidays is a few hours a week in a assesment centre, but nothing else after that.
they came and said they would help us to gain a safespace for ewan and apply for family link and direct payments  so that i can find help. None of this has materialized. In this time ewan has hurt himself on many occasions as he can get out of his bedroom. he comes down stairs and fills the microwave with  cutlery and turns it on. Social services know this, but still they dont bother doing anything. Then i requested to see the cams team and spoke to someone about how we are living. She immediatly put in a request to social services that ewan go into temporary foster care until my batteries are recharged , and also stating that there is a risk to the other boys from ewan. We have had to agree to this as we have no other choice, although its totally voluntary. Our hearts are breaking. Ewan can be loving and sweet and loves his cuddles from all the family. I cant bear the thought of him having another set of parents, i feel like i am failing him, as when things are quiet he is loving and sweet, and thats all i can think about at this time.

We meet the family they are arranging on Wednesday. I can't believe we have no other options ? I found a school not far away that caters for children like Ewan. I spoke at length with the headmistress and she believed they could accomodate EWan on a weekly board basis. To us this seemed the best choice for everyone and We know Ewan would love it. She thinks he needs the round the clock routine they offer and it would prepare him for his future. Ewan is becoming impossible to take out as he spits and hits out or screams. The head thinks she could change all this. I put this  to our social worker and she says that no way will Ewan be able to attend as his educational needs are already being met very well. The only other method of entry is paying the 50 k a year fees, which we dont have.
so rather than do what will probably be inevitable in a year or 2, they would rather tear our family apart,as apparantly educational needs and  home needs don't run together.

I feel like part of me is being ripped apart and i'm failing Ewan by letting him go. Am i doing the right thing? or is there another way that nobody is telling me about?
i am trying to now get the funding myself for a safe room to be built but this could take weeks or months to do.

I know i have to protect the other boys also but i want to protect ewan as well. He hates change and loves his routine. How will it be if he has to go between us, the other family and his school.
please please can anyone give me any advice, i have no other support and no family near by to help. I'm so sorry this is a long read but the flood gates opened and its such a long story i'm only skating over things as it is.
thanks Bekki

[Speeds]

Hi Bekki

Firstly welcome.

Secondly, you have an awful lot on your plate.

I am going ot be very brief.

If you do not want your son in foster care and there is a better alternative then for me it would be better to fight.

However, if things are so bad at he moment perhaps you need to let him go to fosterers while you pursue getting himot a weekly baording school.

I am assuming that the fosters would not be able to keep him at the same school.  If he is doing well there then I cannot understand sending him to a fosterer that is not able to get im to that school.

Probably been no help but I am thinking of you - where are you based?

Also, is there no army assistance - please forgive my ignorance if there is no one to help.

Please keep posting.

big hugs to you

[bekki1970]

hi speeds thanks so much for your reply. What i cant get my head around, nor can his teachers is that we have never been offered any respite, this foster care should be the last option, not the first. I feel that they know they are responsible for letting things get this far, and now they want to get the problem out the way. We are in salisbury, and no the military arnt interseted, altho they are going to help us with finding funding for a safespace. As for the boarding school social services arnt budging, (its gotta be all about money), and they are my only hope. I feel completely let down by the system. Well i am going to see what they have to say about my final request fo respite, and if i get no joy i will be going to the papers. It is a sad country to live in, if they wud rather split up a family, and leave a child with special needs distraught, than pay out a few extra quid to get us the respite, ewan and us deserve and are entitled to. Will let you know how things go, ... have suprised myself with my sudden burst of energy lol,

[paula]

Hi Becky,

Thank you so much for your post. You are having a really tough time and I was so moved and angry to hear your story.

Would definitely agree with you all, that foster care should be seen as the last resort rather than the first. If they can pay for fostering, why on earth can't they pay for respite?!!  This sounds ridiculous to me. I do feel from your post that you feel a little backed into a corner with regard to this which worries me as we are the ones that know our children the best, not social services. I am just a bit worried that you may feel a great deal of guilt if you place your son in care which will not be good for your own well being. Whatever decisions we make, we have to be sure that they are the right ones and that if you have any doubt, this doubt needs to be addressed and perhaps discussed with others close to you. What does your husband say about all of this? Certainly if you are not happy with the foster family when you meet them, you must say - it is a huge thing to entrust your child with others in whatever setting.

With regard to school, who has told you that your son cannot go there? If it was the social worker, then they are not an education specialist so you must get in contact with the educational psychologist to do an assessment. Never take anyones opinion that things are impossible - you must get a second and third opinion at least.

John and I had quite significant problems with Elise's school provision and the best route we found was to arrange an appointment with our local MP. She was really helpful in pointing us in the right direction and it is amazing what response you get when a letter is headed with the Parliament logo!! Similarly, I always ask the Citizens Advice Bureau as they usually know a man who can and they are usually really friendly and easy to talk to.

It seems to me that you have got an awful lot on your plate and you seem to be sorting everything out on your own. Have you thought about contacting Face 2 Face? This organisation is made up of parent befrienders all of whom have children with special needs so know exactly where you are coming from and are completely non judgemental. Their details are at http://www.face2facenetwork.org.uk/. Similarly, you might want to have an advocate to come with you to meetings to help you out and give you moral support. Not sure what is available in your area but we have Popps in Poole - will try and find out what is in your area.

Lastly, don't beat yourself up about what has happened. It comes across very clearly in your post that you love your family dearly and that you are a fab and caring mum to all of your boys. Unfortunately the system has let you down which is a great and unjustifiable tragedy. Please keep in touch and let us know if there is anything that we can do to help.

Love to you all.

Paula

[Nikki]

Hi Bekki,

When I read your post, I was absolutely astounded to hear that a foster family was the only option.  It seems absolutely crazy that they would want to split your family up.  However, short term, it may be the only solution you can go with in order to get some respite.  You must be an incredibly strong person to get this far without having a nervous breakdown, especially with your hubby being away so much - I take my hat off to you.

Can't really offer you any more advice than Paula and Speeds have already done.  Welcome to the forum, keep us updated and we're all thinking about you.

Nikki

[Julie]

Hi Bekki

Just wanted to say welcome to the site.  You are not alone, as we are all here for you (which may not be much help but it's nice to know that there are people out here that understand how you feel).  Speeds and Paula have said it all, and have offered some really good advice.  Paula and I are not that far away from you actually, but we are in a different County which makes a difference to the way things are done!

I was offered some very good advice at the beginning of our journey with Special Needs.  Someone said to me that if an organising says that they are going to do something for you, keep on top of it until it is done.  If you don't then they will let it slip.  Keep on to that Social worker to help you get some respite in the proper way.  In the end she will  arrange it just to stop you phoning her up!! 

Sending you a hug (because I think you need one!)
Best Wishes
Julie

[Lizzymd®]

Hi

Welcome to the site and huge hugs to you.

I was quite teary reading your story. 

I can't offer any more advice, I would say the same as the others.

Temporary foster care, could work for recharging your batteries, however that is short term, you need longer term as you know

"they came and said they would help us to gain a safespace for ewan and apply for family link and direct payments  so that i can find help. None of this has materialized."

Keep in their faces till you get the above, keep fighting.  Hopefully with recharged batteries you'll find the will to fight and succeed

These people have jobs to help people like you and they're failing you. 

What about trying your local councillor or MP

Good luck and keep us posted

[bekki1970]

hi guys, thanks so much for your replies, it means so much that in my hour of need i can come on here and find people who understand. I contacted my local mp, who although lovely and concerned, tended to back social services offer. I guess he thought that its gone too far and theres no point in looking back on what should have been. Ewans and the other boys safety is important and now i must do whatever i can to protect this. We met the foster family yesterday and they are absoloutly lovely, ewan loved them and seemed happy to be with them. Last night me and hubby made the hardest decision of our life and agreed to the temporary set up, if only like u say to recharge our batteries for the next fight ! I have a charity who are agreeing to help with the funding for the safespace, and we are going to work hard to get everything in place for ewan to return very soon. I so wish the social services had helped us sooner, especially on the onset of my breakdown, but it was left and left until we got to this. My poor Ewan, i do feel like ive failed him in some way, but how do you know what to fight for if you dont know where to go or whats on offer.
Anyway tommorow my darling ewan goes to the new family and i feel like my heart is breaking, but i know im still in control and can see him whenever i choose, i just hope social services come up with the promises they are making to get ewan home and sorted with additional care and respite . thanks all so much and i shall come back on when ive somehow adjusted to everything that is about to happen xxx

[Julie]

Hi Bekki

Just wanted to say that I think that you have been incredibly brave and must not, under any circumstances blame yourself and feel guilty.  You definitely have not failed Ewan, but have fought to give him everything that he and your whole family needs. 

Let us know how everything goes for you all.

Best Wishes to you and your Family.
Julie x

[Speeds]

Thinking of you.

I hope everything is sorted ASAP so that your little boy can be back with you.

[Nikki]

Hi Bekki,

That's good news that you've got charity funding for the safespace.

I can't imagine how difficult it must have been for you and your husband to make the choice you have. I'm glad you think the foster family are absolutely lovely and that Ewan seemed happy to be with them.  At least you can put your mind at rest while you gather strength to go forward from here.

Just remember to be strong - you are the centre of the family.  Look after yourself or everything crumbles.  You definately have not failed Ewan - when you see him next you'll have the energy to appreciate him as you'll have had a bit of respite.

It must be quite difficult for your other 3 boys and they will probably really enjoy spending some time with you when you're not so frazzled.

Ewan will have a great week as well, so don't worry.

LOL  to the whole family,

Nikki

[Annie]

 I read your post and I think you sound an amazing mum!Far from letting Ewan down your giving you and your boys time to heal and strenghten,I think your a very wise and positive woman.To say you need a rest is probably an understatment but I wish you all the best of  luck,love and laughter for you now and in the future.Sorry I can,t add any more constructive advice than the other girls have added but hello and welcome to the forum!

[paula]

Hi Bekki.

You are an incredibly brave and caring person and thank you so much for sharing your situation with us. In this life we can only do what we feel to be our best and not reproach ourselves for that.

Lots of love to you all.

Paula

[bekki1970]

thanks guys xxx ewan is adjusting to his other family, altho everytime he sees us he gets upset afterwards. it breaks my heart to see him crying or hearing that hes missing mummy and home. although i will say we are finally finding out what it feels like to live some sort of normal life. its weird as i feel restless at times as ive never been able to sit and have a coffee when ewan is home or leave a window open. the other boys are much more relaxed too. Social services are as anxious as we are to get ewan home and they say they are trying to find a respite package for us but they think they will have to go to a private sector for that as nobody could accomodate  ewan around here. I can only pray they stick by their word this time as we are so desperate to get ewan home. it feels so good to know i have someone who will listen and understands. thanks guys xx

[bigshabba]

i have been told that my son is not disabled enough to warrant 3hrs respite once every 3 months so that me and my husband can go to the cinema together. my son is 3 and 1/2 and he sounds much the same as your son! he has a rare form of epilepsy called doose syndrome and g,d,d and behavioral issues. i am trying to decide what school to put him into mainstreame or special school??
he is a danger to himself and others!
if i hit my kids social sevices would be right in my business, my kids have the right not to be hit by my son!
he sleeps in my room so he and the other kids are safe!
i have told s/s that i am afraid i will hurt my son as he pushes me so much.(i know i must sound so terrible!) since he has been on the anti seizure meds he has got so much worse, he is like a feral animal sometimes... he has between 50-100 siezures a day.
i think you are doing great.
i just worry if he is like this noe what will it be like when he is bigger and stronger, he has already blacked my husbands eye and my 5 yr old daughters?
He did hit the social worker with a stick and he tried to push her off the settee, Idid not find that at all funny lol