Crossroads

[qwerty]

Hi, I have a son, 7, who has Aspergers and toiletting issues (goes in a nappy only). A year ago I was really, really struggling, and someone suggested I call Crossroads. Person on the other end wasn't exacly forthcoming with information, I asked to send me some information in mail, but never received anything. I had a lot of other things to deal with, so I let it be.. Well, I am desperately trying to find some help for my son now, he has been having difficult time with feacal impaction, it has not cleared after 2 months of intensive movicol treatment and he has been pretty much housebound for two months. I have 2 other children, I am alone in the evenings, have no friends, relatives or transport. I could do with a bit of assistance.. I called them up again, they promised to ring back, but did not.. I called them again, and you can clearly detect they are not too thrilled to be talking to you. I am in Cheshire BTW.. Why do you think this is? Have you dealt with Crossroads and what has been your experience?

Edited May 19, 2010 by qwerty

[trekster]

Ive heard that Crossroads branch is rubbish as another parent in your area has also tried them.

 

i would personally try and find a NAS service or branch to join in your area as they are generally

more understanding of aspergers than a generic group.

 

http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1349

 

Early intervention programs, earlybird and earlybird plus.

 

http://www.autism.org.uk/nas/jsp/polopoly....136&a=11954

 

HELP! 2 seminar (caps are part of the course) part way down a course on "common toileting problems in young ASD kids"

not currently in your area but the page is updated every 4 hours according to the site (and ive been on there a few times)

 

There is one HELP! program in Crewe contact manchesterhelp@nas.org.uk for details.

Dates: 12 Jul 2010, 14 Jul 2010, 19 Jul 2010

Venue: Hough Village Hall, Cobbs Lane, Hough, Crewe, CW2 5JN, United Kingdom

Duration: 9.30am - 2.30pm

Costs: Free

Target Audience: Parents and carers

Speakers: Suzie Franklin

 

There are 2 branches in your area details of one is listed below

http://www.nas-cheshire.org.uk/

 

Good luck

[qwerty]

Thank you! I will look into the information you gave me! Actually, I was hoping to get some sort of physical help from Crossroads, you know for someone tohelp to look after my son a little sometime..

[call me jaded]

Have you heard of Short Breaks? Every LA should have a programme, but what's available varies enormously. You should be able to track down someone called an Aiming High Coordinator to find out what's available.

 

In our LA parents asked for additional services from the specialist play team and a big adventure playground.

[trekster]

Have you heard of Short Breaks? Every LA should have a programme, but what's available varies enormously. You should be able to track down someone called an Aiming High Coordinator to find out what's available.

 

In our LA parents asked for additional services from the specialist play team and a big adventure playground.

 

That reminds me i think the charity BREAK offer respite care as well as holidays for disabled children.

[Suze]

Coming at this from another angle....have you been to see your pead with regards to the fecal impactation....he may need a stay in hospital and some heavy dosing to get his bowel movements regular again.Until thats sorted you,ll struggle to get him up and out of the house again.I live in cheshire, is your boy in school?...what about Cheshire Carers Centre,

www.carers.org/cheshire

tel helpline 0800 085 0307

office in crewe 01270 257331

 

they have also just sent out info on Cool2Care providing help in the home etc from qualified and trained staff , it is provided via DLA higher rate.

[qwerty]

My son is being looked after by continence services people and by a "children's bottom" specialist from the local hospital. He's been having problems with poo for a year now and for a year he has been unable to use the toilet saying it hurts. I begged the specialist to do some more examinations, so she agreed to an x-ray and some bloodwork. Blood came back fine, no sensitivities, no allregies and no increased white blood cells. X-ray showed a severe impaction.

 

Over the Easter holidays we were supposed to drink 4, 6, 8, 10, 12, 12, 12,10, 8,6, 4 Movicols - do this for two weeks, but after two weeks they asked me to do this for one more week, then for one more. Then for the next following 4 weeks my son had 12 Movicols a day every day. Basically since 26thof March up to two weeks ago my son was on 10-12-8 doses a day. My son has been prescribed Docusol, I managed it for a few days mixed with caramel and yougurt, but now he won't take it anymore. I also give him Senna liquid.

Now, I started sending him back to school, he is on 6 doses, but he is in a lot of pain and becauseof that he hardly and he looks sickly pale. No one even suggested he should be hospitalised.

I have two other kids, one of them a toddler and no family, no one to help around.. I also have no means of getting around, only my husband drives.

 

It's a nightmare, my husband works evenings so after school I am on my own with all three and my other two kids want to go out, but my Aspergers son cannot. Some days I feel I will lose my mind. My son is not on the high DLA, so I can't get lots of assistance. My son is in mainstreamschool, gets 1 to 1 assistance mornings only and on fridays the whole day.

Thank you for the phone number, I'll give it a try!

 

 

[trekster]

My son is being looked after by continence services people and by a "children's bottom" specialist from the local hospital. He's been having problems with poo for a year now and for a year he has been unable to use the toilet saying it hurts. I begged the specialist to do some more examinations, so she agreed to an x-ray and some bloodwork. Blood came back fine, no sensitivities, no allergies and no increased white blood cells. X-ray showed a severe impaction.

 

Gluten addiction wouldn't come up on blood tests or standard allergies tests (unless it was celaic as well). Sounds like it hurts to poo as hes so constipated? How much water does he drink? Is this issue worse in the summer when it is hot?

Over the Easter holidays we were supposed to drink 4, 6, 8, 10, 12, 12, 12,10, 8,6, 4 Movicols - do this for two weeks, but after two weeks they asked me to do this for one more week, then for one more. Then for the next following 4 weeks my son had 12 Movicols a day every day. Basically since 26thof March up to two weeks ago my son was on 10-12-8 doses a day. My son has been prescribed Docusol, I managed it for a few days mixed with caramel and yoghurt, but now he won't take it anymore. I also give him Senna liquid.

Now, I started sending him back to school, he is on 6 doses, but he is in a lot of pain and because of that he hardly and he looks sickly pale. No one even suggested he should be hospitalised.

I have two other kids, one of them a toddler and no family, no one to help around.. I also have no means of getting around, only my husband drives.

 

When i was addicted to dairy laxatives with lactose in would make me more constipated. Just like the more risperidone i had the worse i got, some autistics react atypically to medication.

It's a nightmare, my husband works evenings so after school I am on my own with all three and my other two kids want to go out, but my Aspergers son cannot. Some days I feel I will lose my mind. My son is not on the high DLA, so I can't get lots of assistance. My son is in mainstream school, gets 1 to 1 assistance mornings only and on Fridays the whole day.

Thank you for the phone number, I'll give it a try!

 

i get middle rate care and home help, i think the information you have been told is just an excuse not to help you. Have you had both a carers assessment and one for your son? My carer could get one for her but not for me which is how we got the home help. Wondering if your area is piloting personalised budgets? How is your son on Friday compared to the rest of the week at school? i ask as this could support your need for 1:1 care throughout school.

 

Could your family ask the NAS for a family befriender who could take out your other sons? What about sibling support groups?

 

[qwerty]

Gluten addiction wouldn't come up on blood tests or standard allergies tests (unless it was celaic as well). Sounds like it hurts to poo as hes so constipated? How much water does he drink? Is this issue worse in the summer when it is hot?

 

When i was addicted to dairy laxatives with lactose in would make me more constipated. Just like the more risperidone i had the worse i got, some autistics react atypically to medication.

 

i get middle rate care and home help, i think the information you have been told is just an excuse not to help you. Have you had both a carers assessment and one for your son? My carer could get one for her but not for me which is how we got the home help. Wondering if your area is piloting personalised budgets? How is your son on Friday compared to the rest of the week at school? i ask as this could support your need for 1:1 care throughout school.

 

Could your family ask the NAS for a family befriender who could take out your other sons? What about sibling support groups?

 

 

I apologise, all my posts are all scattereda round, so it's difficult for someone to get the full picture. My son has Aspergers, he hasn't got severe autism. He is very well mannered, well behaved and sounds intelligent when you just hold a short conversation with him. People who have come to evaluate him at school for funding purposes have concluded he is fine with a half day support. I think they got 17 hours a week, so some extra time was left somewhere, so decision was probably taken to make friday a full day, but for the rest only until 12 pm.

 

My son is not constipated, the poo is like a smoothie. He has been on 6 movicols, now we are going to decrease to 4. He drinks ok, I would not say he gets dehydrated atv all, I have to dilute the stupid Movicol, so he can't feel the horrible taste so much.

 

May I ask how you got home help? I have been in so much anguish about this situation,the social services were out to make anassesment, they said they my son will be able to receive some direct payments, but cannot tell me how much or when! I have tried to call and ask for a carers assesment, but they keep telling me they need to verify something and make mee fel as if I am wanting to get too much all for myself, or like it's not right to ask for it. Or maybe they cannot go ahead with it until they have a clear idea how much my son will be able to receive. I will call again next week!.

 

Just few days ago there I met a man from the Buddy Scheme, he took some details about my son. Hopefully they can find someone! There are no support groups in my area, if there are it will take driving, which currently is impossible for us.