7 year old FASD child in nappies

Just thought to let you all know that if your adopted child is in nappies or has toileting difficulties and of school age, they should have a top level EHCP with full time carer in mainstream school. It took us a long time to get to this stage. Happy to use us as an example to your particular SEND authority.

[WildPoppies]

Hi there Bobsyouruncle

This is interesting. I wonder what degree of toileting difficulties would trigger this level of support? Our youngest, aged 6.5, has significant wetting at night despite medication, and is often wet during the day at school. We have applied for EHCP, but awaiting a decision by the LEA as to whether they will go for statutory assessment process or not.

So I wonder, would you be happy to explain a bit more about the extent to which your little one has difficulties with toileting? Is it a problem with wetting only, or soiling too? How often is there a toileting accident at school? I'd be really grateful if you could share more information about your little one.

Our school shows very little interest in supporting our little one with the toileting difficulties, (they show little interest in any of the support our children need, hence our parent application for EHCP), so any info from a fellow adopter would be helpful in our attempts to encourage the school to support our children more.

[Hidden in reply to WildPoppies]

Thanks for getting in touch. Lots to say about our struggles over the last four years after adopting three boys so I'll try and keep to the facts.

Ages 9, 7 and 3½, the younger of the two have documented evidence of alcohol during pregnancy but no diagnosis yet of FASD, autism only. Middle boy now registered disabled and I'm his designated carer and we claim DLA and carers allowance, we also get a free supply of nappies from our authority. That's the good part, but as you know FASD is a lot to deal with! We have fought for four years with the school and post adoption as our boy wasn't toileting....did we get help....NO! Eventually we screamed at all the top people in the entire county and indeed our authority and finally got the support in place that our boy requires and especially on a legal front too.

He has had chronic constipation in the past which caused a mega rectum and colon, basically his poos were so large it had stretched everything out of shape. I'm a chef and our kids don't have processed food at all, so it wasn't down to diet. We also noticed early on that he would be playing naked in the paddling pool and be peeing and not realise. On another occasion he stepped over the bath to get in the shower and was peeing without realising either.....a very odd sight to see. From that point we knew something was wrong and started with doctors and hospitals.

He's been on all the medications available for bladder control (even the strongest one only intended for adults) and has now come off those as it has no effect. He's only on a laxative now, called Sodium Picosulphate which is quite powerful. He was on 30ml daily which would turn you and I inside out! Over time his colon and rectum have reduced in size and he's only on 5ml daily, if we reduce it further he binds up straight away. Has a poo most mornings before having a shower as routine, so we now have relatively few accidents.

He currently attends a new school as we had to get him out of the one he was in as there was obviously no care taken around his needs. Life is so much less stressful and we can actually concentrate on developing as a family. He is still soiling but far less now his bowel size has reduced, maybe once a week now as opposed to five to seven times a day (has been twelve on the worst day). His main difficulty is wetting and so we were advised a few years back to put him in nappies once again even though he knows the toilet routine back to front.

Simply put, he is not ready to toilet for either poo or wee and clearly has no intention or feeling to do either. No toileting accidents at school as he's in nappies. He has soiled and still doesn't tell his carer or any other adult until he's asked to get changed as part of his daily routine at school for a fresh nappy at certain times.

We also instigated the EHCP as the original school didn't (even though we requested it through them) and now have the highest for any child in the area as it's a 'personal care need' rather than an education need. That's the great thing about EHCPs against the old Statements.

So much more to say......if you don't think the school are dealing with things....SCREAM at them and then scream some more, get councillors involved, go straight to the head of your SEND department, find the councillor for children's care, scream, scream, scream...and then cry a little, take a deep breath and scream again until you are happy. We are now happy, but getting slightly anxious as our youngest starts school in September and isn't showing signs of toileting and has speech & language delay........

[lizzily]

Very interesting posts, thank you. My nearly 8 year old grandson, (not adopted but with a mother who drank heavily in late pregnancy), not yet diagnosed officially but I'm convinced we are on the right track at last, has taken until now to be dry in the daytime but still drowned out at night and soiling sometimes twice a day. Fortunately we have an extremely caring school who have people in place to help him change when needed, and as we all have adopted a laid back approach he will now tell us when he has soiled. He's been subjected to teasing by his peers which unfortunately tends to happen at this age, so it's great he can be sorted ASAP. Just wondering also about an EHCP if we do get a diagnosis and the level of disability needed to be successful?

[Hidden in reply to lizzily]

Is it a mainstream school, as the level of care sounds quite high, even for a special school without an EHCP. Any toileting difficulties during the day should gain you an EHCP and he's defo going to need one in secondary......primary to secondary is a huge leap and not the same care at all as it's more about education and grades (partner is a vice principal). You should be screaming for one at the moment and the school should be helping develop it! I'm actually quite shocked unless this is all from a special school.....

[lizzily in reply to Hidden]

Thanks for your speedy response. This is a quite large mainstream primary school. We have excellent rapour with the staff particularly the pupil support teacher and have regular TAF meetings with involvement from CAMHS. Because of his early neglect as well as alcohol we have been going down the attachment route and until now the school has been able to put in extra support without a EHCP. He attends a nuturing group every morning before school and can choose to go to the Sanctuary Garden if he finds playtime and lunchtimes difficult. We are more than happy with the schools approach even though they too are on a learning curve. He is however now starting to fall more behind academically and tires quickly. We have an appointment with the Paed. coming up soon and she has a special interest in FASD so waiting for this and hopefully a diagnosis, seems prudent before we ask for a EHCP. When it comes to it I'd be glad of all the help I can get with the application. My son's a single parent and I'm kind of surrogate mum.

Best wishes Liz

[WildPoppies]

Dear Bobsyouruncle

Thanks for your brilliant long reply. I'm just popping in here at the mo, but will be back to explore your reply in more detail and respond. many, many thanks.