advice needed please

paidinchickens

hi sorry to jump straight in but navigating any sites is hard work when I know nothing about benefits.........here goes

Ex partner and new wife has just had a baby with down's syndrome. My son to ex is worried and in a mess (teenager) but luckily my ex and me still get along well.

Ex has asked me to look into what benefits he may be entitled to as his wife is not coping very well (early days) and he thinks he may have to cut to part time at work or stop work altogether.

basically will he be better off working full, part or not at all and what will he be entitled to he only has two weeks until he goes back to work.

I am re married also and none of us have claimed benefits so it is like a mine field.

plus are there any places where I can take my son to have any questions answered as I have no idea apart from google and can not help him and his dad is obviously pre occupied with the new baby and wife.

kingfisherblue

First, congratulations to the new parents - having a baby with DS can be challenging, but like most children, it is very rewarding.

The first port of call is the Down's Syndrome Association

http://www.downs-syndrome.org.uk/

The advisors there are brilliant - they can answer most questions and will sometimes arrange a call back so that you can speak to the most appropriate person.

https://www.carers.org.uk are also worth contacting. In my town, we have a Carer's Centre, where a benefits advisor will help with applications for benefits and work out what is best for the family in terms of income. most councils have a welfare rights officer if there is no carer's centre.

Some towns have local DS groups. It is scary to go along at first (I speak from experience!), but it is worth maikng the effort. There is so much help and advice, not just for parents but also for siblings.

https://www.sibs.org.uk might be able to help your son. In some areas, there are young carer projects or siblings projects. The local child development centre or the council should be able to help with this information.

Regarding benefits and giving up work - it is really hard to give any advice on this, as everyone's situation is different. Although the baby might be entitled to Disability Living Allowance, it depends on his care needs. My son has DS and from birth, he had a very high level of need, way above the needs of most babies (who, of course, all require a high level of care). There are three levels, high, medium and low - it is only paid once the baby has had the additional needs for at least three months and is expected to have them for at least another six months. Mobility isn't paid until the age of three (if the child qualifies for high rate mobility) or five years (for low rate mobility).

If the child gets middle or high rate DLA, one parent may be able to claim carer's Allowance, dependent on a number of other factors. Child tax credit can be paid at a higher rate depending on the level of DLA and the household income.

Personally I don't think that most families would need both parents to give up work. They will be better off than on benefits and it may be difficult to find work in the future. I'm not saying that it is easy caring for a child with disabilities, but it is something that is managable.

My own experience is that when our son was born, my ex took a couple of weeks off (compassionate leave - his employer offereed it to him when he discovered that our son was in intensive care, following surgery at nine hours old). When our son was on the road to recovery after his surgery, my husband (now ex) returned to work and took a week off when our baby came home. He took time off occasionally to accompany us to medical appointments, but I went to most of them with other family members as we couldn't afford for him to take too much time off.

My son was born with a number of other conditions as well as DS and I can honestly say that these have been more of a problem than the DS. Altohugh he has multiple disabilities, my son attended mainstream primary with support until he finished in year 6. I then made the decidion to send him to a special school, as I didn't think he would cope in mainstream secondary. He is now 13 and thriving there - and my friend's daughter (age 14) is thriving in her mainstream secondary despite having DS.

The early days are hard - I will try to track down a short story I was given to read, that helps you to understand the process of grief when having a disabled baby, but that will have to be later as i need to pick up the youngest from school now. i will say, though, that despite it being difficult at times, I wouldn't swap my little man for the world!

paidinchickens

Many thanks for your helpful and prompt reply.

It is early days (less than a week old). I am trying to support my son and my ex but what a strange situation (you are supposed to hate your ex not help them lol)

I think everyone is expecting the worst. I think my son maybe better when he meets the little fella.

I do not think the hospital have been very helpful as they have just been given a couple of leaflets and left to it so far

thanks again xx

kingfisherblue

The link to the short story I mentioned in my previous post:

http://www.tasgreetings.com/holland.html

For your son - tell him that it is okay to feel the way he does. He may feel embarrassment, guilt, fear, shock, grief, or any of a wide range of emotions - many of which he will perceive to be negative. It is early days yet. Everyone will need time to adjust, including your son. You sound like a lovely person, so I'm sure that you will be there for him. Let him know that he can tell you how he feels, without any fear of what you might say. He needs support as much as the baby's parents, but siblings are often forgotten when something like this happens. It isn't always easy, but siblings do learn to accept that their younger brother or sister is different - and that different doesn't mean bad.

My son is now 13. He will always have DS, but it is just a part of who he is. He is the class clown, and loves to make people laugh. He dances in a very exaggerated manner (easy for him, as he has hypermobile joints) - and this brings both my son and us a great deal of happiness, as he is obviously so happy. He calls everybody 'friend' - and as I am typing, he has just come in from the school bus (his sister went out to meet him) and shouted 'Hi friend!' to me. Sometimes he calls me Mugger. He has heard the word 'mother' at school, and can't say it properly . In our house, that is 'nunny' - because he can't say 'funny'. We have some very happy times, although we have frustrating times as well.

My son is now in Scouts. He attended Beavers and Cubs (without support, but with very good leaders), and moved up to Scouts about 18 months later than most boys. He has receioved his Bronze and Silver Chief Scout Awards (in Beavers and Cubs) and is now working towards his Gold Chief Scout Award. He takes a bit longer to do things, and there are some things he will never manage, but there are many that he will. It will just take a bit longer than other people.

If there is anything I can help with, please ask. I hope that your ex, his wife and your son enjoy the new baby as much as we enjoy having our son. For yourself, it is fantastic that you are being so supportive, not just towards your son, but towards your ex and his new partner. That will help your son to feel secure and will help him to accept his new baby brother or sister. you're doing a great job!

paidinchickens

thank you so much you have brought a tear to my eye and a couple of giggles as well. My son has also read what you have put and although he still has a thousand questions the one he was most worried about the most was if the baby will ever be happy and you have put his mind at rest on that one. thank you so much and I am sure i will be picking your brains again xxx

kingfisherblue

If your son has any questions that I can help with, feel free to post here or pm me. I can't guarantee I'll know the answer, but if I can help, I will. As for whether the baby will be happy, nothing is cerrtain in life, but my son is definitely happy. He knows that he has DS and he knows that he is different to other children, but he accepts that it is just because that is who he is, and that we all love him. He now recognises other children with DS - 'little boy, like me' were his words when he saw a small child with DS on holiday last year. Sometimes he adds 'Wow!'

Your son is obviously a caring young man if he is concerned about the baby's happiness already. He may find that people make thoughtless comments along the lines of 'what a pity' - I just tell people that I love my son for who he is, not for who others expect him to be.

I am sure that your son will love his brother, and love is what matters.

kfb xx

paidinchickens

my son is far too caring for his own good!

I had to fetch him from school this week as he had "headaches and stomach ache" but when I got him home it was a complete nightmare.

Apparently the "in" comments at school are "do you have DS or summat) and the usual sayings that were around when we were all at school. Nobody knows anything at school as it is still early days but my son is usually the nicest, kindest kid but feels he can not stay at school without wanting to beat someone up every time they say something. Apparently last week a lad at school had his nan die and all the kids took the mick until he went home crying. these are 15yr old not little kids who do not know what they are saying!!!:mad:. This is a village secondry school where the kids are not as bad as the ones in town. The school has a good rep. Having spoken to a few friends about how horrid these kids are I have been told they are not as bad as the kids in the schools around the city.

I am not silly and I know kids are cruel but how bad have they got????????

He says he can not stop thinking about things and can not sleep. Part of the problem is he does not think his dad is capable/won't cope and it will not be fair on the baby. His dad was 22 when he was born, a good dad but a tad useless as most men are. His dad works with disabled kids and I have said of course he will cope he is better trained than anyone I know!!!

He is constantly on google looking into everything which I think is making it worse but he is like me and likes to have all the facts about everything as it makes you feel less useless I suppose.

He has still not even been to the hospital to see the baby which I thought was best at the time given that the babies mum would be a mess and needed to sort her head out a little before having to face the world, plus she has had that moment of "at least you have one son thats ok" which I totally understand as her whole world must be collapsing in her eyes. I don't know if my son would be better going as things can not be as bad as he is imagining. Either that or take him to the docs because I do not know what to do. if only he was 18 then at least he could have a beer!

He has having the rest of the week off school. I did think of speaking to the school but they can not stop kids saying things and can usually make things worse. I need to tell his dad how bad he is but the baby has a top doc visiting today about an op so he really has his hands full.

I know I have an over sensitive boy but he has always stuck up for whoever is getting bullied as he hates bullying with a passion and several times he has stopped kids picking on people at school. I am very proud of him standing up for what he believes in. My daughter/his sister (23) and myself are the same but we are just not as sensitive more of a loud/gobby kind of nature lol

My hubby is very supportive but we have loads of issues with his two boys that live with us as their mum was a boozer (things got very bad) so the kids are still screwed up.

I just feel so useless and do not know what to say that I have not already said.


Life was not like this on the brady bunch lol


going for a coffee and a fag......the sun is shinning so I hope it will be a better day xxxx

kingfisherblue

My heart goes out to your son. My youngest is also very sensitive - he argues with his brother (who has DS), but if anybody says anything negative about disability, he is really protective and gets very upset. I had to collect him from Scout camp a few months back, when a couple of the boys were using the word 'mong' - my lad knows the history of the word and found it very offensive.

Headaches and stomach aches are, as I am sure you know, a symptom of the stress that he is feeling, and a good reason not to be around the kids in school when they are using phraes that are inappropriate and offensive. Although you state that talking to the school would make things worse, could you ask the headteacher to have a general talk in assembly - that way, none of the pupils would connect it with your son. back in the early 1980s, my school arranged a visit from the local special school. Pupils from there came to join in an afternoon of sports, art, cookery, etc. There were a couple of children with special needs put into a group of around eight kids from my school. It was amazing. I would have fully expected that many of the kids from my school would have teased the disabled kids, but they were really supportive and encouraging. One lad had no legs, but had a try at trampolining - nobody laughed when he toppled over (knowing many of the kids in my school, this really surprised me!). Several pupils from my school now work with people with disabilities - I don't know whether that day made a difference to them, but perhaps they learned something from the kids who visited us.

Please ask your son to ring the Down's Syndrome Association - they will be able to talk to him about his feelings. He is bound to be anxious and worried. maybe he feels that he will have to take on the role of 'dad' sometimes, if he thinks his dad won't cope? Encourage him to talk about his feelings, not to bottle them up. Sometimes writing everything down can help - not necessarily for enybody to see, but just as a means of releasing his feelings. If he does want to talk to somebody, is there a mentor or teacher at school that he would feel comfortable with? I don't think you, as his mum, is necessarily the best person - sorry . Your son may be concerned that he will make you worry about him, and as a teenager, he will also want a certain amount of privacy from his mum, no matter that he loves you dearly.

I am like your son, in that I want to know everything. Having said that, much of the information out there is negative. Remind your son that a syndrome is a group of characteristics and conditions that may occur in a person with that syndrome - nobody has everything! Children with DS are like any other child - they are individuals. No two children are the same. Yes, most children with DS share a number of physical features, but the level of facial features does not indicate the level of physical disability or mental capacity (a common misconception). Also, features change over time, as do the features of somebody without this condition.

Children with DS are more likely to have particular conditions than the general population - including chest infections, heart problems, congenital digestive disorders, etc. Having said that, operations and medication help immensely. My son was born with a number of rare congenital abnormalities of the digestive system. Reading about them was scary stuff! I knew before his birth that he would have one condition, and that he might not survive the birth. He was born with four rare abnormalities and was given four hours to live. My little lad is now 13 years old :j

Yes, he has to take medication every day. Some of the problems he has were a result of the surgery that saved his life, but we can live with that. He is a happy and popular boy, currently very proud of his small moustache :rotfl:. He also has a life expectancy of around 65 years, based on today's statistics.

When your son is ready to visit his brother, he will probably find that he feels a whole range of emotions. He may be scared, happy, proud, worried, and many other emotions. That's normal. I was terrified of seeing my son for the first time - he was two days old and in a different hospital (our local hospital couldn't carry out his surgery, so my son was transferred to Alder Hey in Liverpool).

If your son doesn't have a photo of his brother yet, could this be arranged? Would he like to buy a present for the baby? (Maybe something for his stepmum as well?)

I agree that once he has seen his brother, your son is likely to feel better. Fear of the unknown plays on your mind - you imagine the worst.

Please let me know how your son is getting on. I really feel for him. The teenage years can be difficult enough as it is, without the additional stress of what he is going through. He sounds like a strong and sensitive young man, though, and you should be very proud of him

margaretclare

Thank goodness, the world has moved on from a generation ago when DS babies were labelled 'mongols' and parents were advised to put them in a home and forget about them.

Because of the extra chromosome, many other body systems are affected, commonly the heart.

They need extra attention with what they eat because they tend to put on weight very easily. They benefit from extra stimulation, bright colours, music, being read to, all those kind of things. They have a future but their education is very important and needs to be tailored to their own abilities and needs.

I go every year to the Presentation Day at Nottingham Trent University's Brackenhurst campus, a former agricultural/horticultural college. Along with students who're going on to degree courses there are DS students on the Pathways programme who have qualified in horticulture, animal management, countryside activities, all those kind of things. It's a joy to see their faces when they win an award and go up to receive their certificate and shake the hand of the Dean of Faculty. Many of them seem to have a great affinity with animals or plants and can get jobs working in those kind of areas.

So the future is not all that bleak.

HTH

paidinchickens

Just a quick update as every time I try to reply a certain someone comes looking over my shoulder!

I have spoken to my sons teacher today so she is aware of any problems that may arise and understands if time off school is needed.

Baby is still in the hospital and son went to see him for the first time yesterday (taken up by gran and uncle on fathers side of the family)

He seems better for going as he does not seem to be asking as many questions.

His dad has said he can go and stay for a few days when they get home but is still unsure how long this is going to be but hope it will be towards the end of this week. I have explained this to his teacher that said that is no problem. They are on holiday next week so hopefully he can have a long visit.

His Dad does seem to forget to ring him (he used to ring every night) and only rings when my son texts him. This may cause some problems as son thinks this will not get any better now. I thought of ringing ex and giving him the heads up but I am unsure how much he is dealing with at the moment.

I feel really confused at the moment as I feel I have to make sure my son is happy but I do not want to dictate to my ex what he should do so he does not make my son feel left out.

It is still early days and I feel the next hurdle will be "my dad has not given me my pocket money" as only teenagers would say lol

I am so glad I have people to talk to on here and really appreciate the time you spend replying xxxx

MrsManda

paidinchickens wrote: »

His Dad does seem to forget to ring him (he used to ring every night) and only rings when my son texts him. This may cause some problems as son thinks this will not get any better now. I thought of ringing ex and giving him the heads up but I am unsure how much he is dealing with at the moment.

I feel really confused at the moment as I feel I have to make sure my son is happy but I do not want to dictate to my ex what he should do so he does not make my son feel left out.

I doubt your ex is forgetting your son as such, more that he's got a lot of stress and pressure trying to sort out what's happening with the new baby and when he'll be able to come home. The time after a new baby is always chaotic and it's only going to be more so with a baby who is poorly.

Try to explain to your son that his dad still loves him but is under alot of pressure at the moment. The fact that he said your son can come and visit means he is thinking of your son.
Once the baby comes home, make a date for your son to visit and if your son continues to feel left out then it may be worth having a chat with your ex but I think you need to give everyone time to get used to the new situation and settle into the new routine.