In wanting a hand hold (child with incontinence and retained reflex issues)?

[mycarpetsun]

I've posted about my 6 year olds toilet issues before. In fact it was Mumsnet that made me realise he was actually chronically constipated (hence huge blow outs at school.)

It's still going on months later, I've been in to school twice today to clean him up, I can't work or even take a shower in case I get called in.

He's also been diagnosed with a retained Moro reflex, I want a 2nd evaluation on that but it would explain a lot.

I'm at the end of my tether. I have no family here and dh's family are useless. He's constantly soiling himself and his doctor isn't taking it seriously enough.

He's just been registered disabled so has a 504 plan at the school. The plan wasn't followed today as they had a substitute teacher in. They left him heavily soiled sitting in the classroom.

Dh is trying but useless.I'm his only advocate and I'm trying to fight for the treatment he needs in a system I'm not used to and don't understand.

I broke down at school today in front of some staff, I'm sure they all think I'm crazy now.

Other kids are starting to notice what's going on, it could so quickly go wrong for ds and ruin his school life.

Sorry this isn't making much sense and is such a fractured post, I'm ashamed to say I'm really struggling to cope, his doctor keeps saying how common it is but I bet if it was her son soiling himself multiple times a day she wouldn't be so laid back about it.

this must be so hard for you all. Definite handhold here and the staff will 100% not think you are crazy x

@kleew1 thank you. I got a hug from one of them but I hate to think they think I'm just this weepy woman who can't deal with things.

I've just reached a point where I'm so worried about ds and the constant fight to keep his dignity intact I'm feeling a little unhinged.

They will 100% have met more than enough idiot parents to only hug the ones who truly deserve it.

Honestly I can’t imagine what you’re going through and you’re only wanting the best for your boy. I’d be the exact same.

Hopefully someone will come along and give you useful chat to help you xx

@kleew1

Thanks. You always think you'll have a healthy kid and when you don't it knocks you for 6 a little.

I never realised how having to fight for your kid's needs would make you such a bloody weepy mess!

I've always been in awe of my mum who was a single parent to a severely disabled child but now I'm really seeing what she went through. It's a very lonely process.

OP, don’t know what to say.
It’s hard 💐

Thank you. I just wanted somewhere to fall apart a bit as I can't outwardly at home.

OP I don't have any experience of this issue but I have cried at school before and had loads of parents cry at my work.
That is perfectly normal, it just shows you care.

Also if you are in the USA the medical system is labyrinthine so I'm not surprised you are struggling.
Ask everyone you can for help, be open about what you don't understand.

I'm so sorry, OP. I'm in the US too - could you push for an IEP rather than a 504 Plan? A 504 plan requires the school to make certain accommodations whereas the IEP is more formal and tends to be more strictly adhered to. I'd have thought that if he were disabled (SSI or SSDI) that he'd qualify for special ed and therefore an IEP would be the better path.

@midwestspring i am in the US. I'm trying to very plainly tell people I'm not familiar with terminology and protocol.

We've only just got healthcare and I'm drowning in all of that too. It's so confusing. I spend hours trying to get the appointments and referrals he needs and then have to spend hours figuring out how they get paid for.

@Episcomama that was on the table bit ds I'm in such a tiny school I think what happens today was genuinely lack of communication.

They were the ones pushing for a 504 and I just had the special Ed teacher call me because I sent an email saying I was worried about how ds has been treated today. I think they want to do their best it's just such a rural and casual school they're not quite as up to speed as they could be.

I'm going to look further in to am IEP though.

It probably helps that dh is on the school board so although he'd never dream of abusing his position it probably makes teaching staff tread a little more carefully around us lol.

I think once we have the little niggles in his health plan ironed out it will be fine.

But I'm annoyed that just two days in to a very clear and rigid plan his toilet and food log weren't filled in and he was left in a classroom with others when he'd had an accident. It's such a small community that I know and am friends with the substitute teacher, it all gets so awkward.

I just want my happy, healthy little boy back.

Sorry for the typos, my phone is on autocorrect craziness today!

Okay, I'm also a relatively new transplant to the USA and have had to get medical support for my ds.
The system is a nightmare, I think Americans just expect it.
On the plus side there are services with reasonable wait times.
On the downside you have to do a lot of the medical choices yourself and insurance takes up days of your life.
It is just how it is as far as I can see. Hopefully you will get support sorted out and it will seem easier.

I understand. My 6 year old has rumination syndrome which means he vomits several times a day and he is also a bedwetter. I feel like I am drowning in laundry.

www.pacer.org/

OP, I understand the need to "tread carefully" in that situation. The link above is to an advocacy group that works for children. Although they are headquartered in MN, I believe, they have lots of general IEP/504 info and national groups, too. Please reach out to them; I think they could be a good resource for you.

Are you getting proper help with the impaction/ overflow?
I understand you are not in UK, but the ERIC website is very good.
I am on my phone so can't link, but try google.

@endofthelinefinally we're seeing a doctor but I want to see a specialist as it's not being resolved. I've been looking at the Eric site a lot and directing US parents there too!

@Episcomama thank you!

We had another meeting with the special Ed director who hit the roof when he heard ds was left in the room when he'd had his accident.

His plan has been changed and a few words were had with people.

@elliejjtiny DS also had CVS (cyclical vomiting syndrome) and although it's getting better I totally empathise with the ridiculous amounts of laundry. It's almost worse than the poo as it so projectile isn't it?

Ds would ALWAYS manage to get it in my hair and his hair.

Hi Op, in the UK my suggestion would be to find a primary movement practitioner to work with your son. There might be something similar in the US? It would target the retained moro reflex. An occupational therapist may also be able to help.
Here is a link to the uk site for some more info, hope you can get it resolved.
www.primarymovement.org

@noodledoodler thank you!

He's got his 6 year check next week and I'll be asking for a referral for a full OT evaluation. We'll definitely start on OT then. The primary movement practitioner is something I'll look in to, thanks!

The best website for poo issues is the UK site, the poo nurses.
Google it and watch the video right to the end. It is brilliant and very, very helpful.

Hi op I’m not in the US, but do the docs understand what is causing the constipation and incontinence? I’m asking this as I have crohns, so have experienced vowel issues myself.
Has he had any blood tests or tests on stool samples?

@Wonkywyebrows he's had tests on both but they just tested for parasites and celiacs.

The doctor says it's diet but his diet has been brilliant the last few months so I'll just not believing that anymore.