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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to ask what help disabled parents get?

31 replies

Sleepyhead11 · 23/06/2019 10:12

I am TTC for the moment with my partner, but I have moments of extreme doubt and worry. I want a child and we are in a stable relationship/both working, but I only work part time. We are on the autistic spectrum and I have Rheumatoid Arthritis, which is OK at the moment although I have had to come off my meds to TTC.

I went to the GP with my concerns and she said that as inlaws live nearby and are supportive, and as we both have good friends this will help. She spoke about importance of a support network.

I'm still worried though. Last week posted about having a huge panic attack and maybe this was part of it.

Please be gentle. Thank you.

OP posts:
SupermassiveBlackHo · 23/06/2019 10:31

In my experience, absolutely none. Resources are completely stretched and support for anyone disabled is minimal. My DS12 is classed as a Young Carer and he's had no support either despite numerous visits from social services and occupational therapists.

aPengTing · 23/06/2019 10:39

No idea if it depends on where you live but where I am you’d receive zero help.

Cloudsurfing · 23/06/2019 11:39

Probably nothing, especially as you both have jobs, are in a stable relationship and have family and friends nearby to help. That is more than a lot of people have. What additional help do you think you would need?

Sheldonoscopy · 23/06/2019 11:52

As a lone disabled parent I am entitled to direct payments (decided by occupational therapy) and paid directly to the person that is doing the jobs/hours paid for. But it’s minimum wage and less than 200 a month which is less than 5hrs a week.

I feel fortunate to receive that help though, and only do so as a result of how severe I am. And it doesn’t cover support with my dc, it covers a cleaner (for example) and support around the house. Child related I have to pay myself from my disability money.

I was offered carers allowance but nobody around to help with that.

Original poster
Sleepyhead11 · 23/06/2019 14:27

Thank you all. I think I'm talking more about emotional support, more health visitor visits, someone to advise of any problems we might encounter than financial help if that makes sense?

OP posts:
Original poster
Sleepyhead11 · 23/06/2019 14:28

@SupermassiveBlackHo that's really upsetting, I'm sorry to hear he's had so little support. he and you both sound great.

OP posts:
Original poster
Sleepyhead11 · 23/06/2019 14:31

@Cloudsurfing I feel like I would need more visits early on maybe, and some training for DP perhaps too. He is Dyspraxic/Autistic and has been helped to develop coping strategies with every day tasks. Would someone be able to help a dyspraxic parent learn strategies to change nappies, etc? Kind of like occupational health but for parenting, if that makes any sense at all....

OP posts:
gamerchick · 23/06/2019 14:40

I don't think there is very much out there. You could sign up for parenting courses to learn the practicalities.

You also should take into account it's increasingly becoming apparent that autism is possibly genetic and your child might be as well. If that turns out to be the case you'll need help with that as well.

I was offered carers allowance but nobody around to help with that

It's just a form to fill in online. It's relatively simple to do compared to DLA forms.

SavageBeauty73 · 23/06/2019 14:40

Without sounding harsh, you and your family can teach your DH to change a nappy. There is absolutely no funding; for example my severely depressed teenager has been waiting for a therapy appointment since January and CAHMS has no funds. I wouldn't expect anything extra. You could pay for a Doula to support you through pregnancy and a night nanny if you are struggling.

You will have a Health Visitor. You can apply for Surestart where someone comes over to help.

mumwon · 23/06/2019 15:01

contact NAS (National Autistic Society) to see if there is any local support including hands on or information (as you are both within Spectrum) you may find someone to help with form filling (or CAB for that) sadly even charities are having issues with local funding.

aPengTing · 23/06/2019 15:32

Why can your DH not self research strategies for changing nappies etc? There’s are plenty of websites, books, forums, YouTube’s etc.

The HV will probably visit you more frequently than normal if you feel you really need the support but they’ll most likely signpost you to parenting classes, mother and baby groups etc.

There’s barely funding available to help those with severe needs.
Your best bet is to talk and make a plan with your support network about how best they can help you.

CitadelsofScience · 23/06/2019 15:43

There's nothing automatic in my experience but I'd suggest researching Homestart maybe to see if they can match you up with someone for support?

Cryalot2 · 23/06/2019 15:44

I think it depends on where you live, but to be honest I don't think there is much.
If it's any consolation one of the main drugs I took during pregnancy many many years ago, now comes in a box with warnings all over in bold, not to take if pregnant or tttc . My adult kids are ok and I took a high dose.
Now there is the internet and there can be good support online.
I think have a chat with your gp and explain things and they will know what is available. I wish you well coming off your meds.

PoppadomPeach · 23/06/2019 15:52

There isn't support for anyone really nowadays. Since you're both earners and have a relatively good support network on hand, you will come very far down the list.

There are plenty of books/videos on YouTube about parenting (how to change nappies, dress baby, make bottles if not BFing...)
He could even get a doll and some cheap newborn nappies to practice.

A parenting course would be a good idea - your hospital may run some sort of session too.
I'm afraid that most of this would have to be found by yourselves though.
Best of luck.

PoppadomPeach · 23/06/2019 15:55

With regards to more health visitor involvement.. yes, if you speak to them about needing support they should signpost you to the services available. I'm not sure if there are children centres in your area, when I was pregnant with DD there was one local to me which offered 'baby 101' sessions.
Again though, I don't think the resources are out there to provide you with more visits than normal. Each and every NHS service is stretched to its very limit.

TabbyMumz · 23/06/2019 15:55

Are your in Law's going to be doing most of the child care?

TigerMummy1 · 23/06/2019 16:04

In my experience, very little. I was lucky I had a good health visitor, but I'm told that is just luck. She came round once a week for half an hour.
See if you have a childrens centre nearby; most have been closed now but there are some in town centres still.
Home start can send a volunteer once a week, but again hit and miss whether they are any good.
Sorry that's miserable reading... I really struggled and the only help I had other than our lovely hv was family, who luckily lived near, and people at church - I don't know how I would have managed without them.

CheerfulMuddler · 23/06/2019 17:03

If it's any consolation one of the main drugs I took during pregnancy many many years ago, now comes in a box with warnings all over in bold, not to take if pregnant or tttc . My adult kids are ok and I took a high dose.

If OP has RA, she's probably on methotrexate. That's prescribed as an abortifacient. Not all 'do not take in pregnancy' drugs are created equal. OP, please only take drugs in pregnancy in consultation with a doctor.

Home Start is a good idea. And if your RA becomes so bad you aren't able to care for your child, your DP can apply for carers allowance. However, most people find their RA improves whole pregnant.

Original poster
Sleepyhead11 · 23/06/2019 18:47

@TabbyMumz No, but they live close to us and would be able to help out/come round in emergencies. MIL has said she'd come stay with us for the first week, which would be very welcome.

NAS is a great idea, as are parent support groups. Thank you all. Even Youtube videos.

Money isn't so much the issue. Like everyone we'd take a financial hit if we had a child and have fewer nice things/holidays etc, however that isn't a problem. We're quite lucky in that we do both have OK salaries and MAT and PAT leave packages. We currently have a cleaner two hours a week and she's a Godsend.

It's more a general anxiety about emotional/practical support. This might sound daft - but I don't know how else to say it. Autistic people have difficulty 'reading' others. How would I know how to 'read' a non verbal baby, to understand his or her needs?

OP posts:
Original poster
Sleepyhead11 · 23/06/2019 18:51

@SavageBeauty73 I'm so sorry about CAHMS. I know others who are waiting forever and it's horrible. The only way to get fast tracked is to be admitted, and no one bloody wants that.

OP posts:
Original poster
Sleepyhead11 · 23/06/2019 18:53

@CheerfulMuddler Yes, but I'm not taking it any more. I'm on Hydroxocloroquine too.

Autism is comorbid with anxiety too so taking an SSRI also.

OP posts:
TheDarkPassenger · 23/06/2019 19:07

There’s loads of help here! Where are you? We’re county Durham

Elllicam · 23/06/2019 19:12

I think it sounds like you guys are doing really well. I wouldn’t worry too much about reading the baby, everyone is guessing. You try to feed them, change them, burp them and then if they are still crying you walk up and down with them. They aren’t too complex.

Original poster
Sleepyhead11 · 23/06/2019 19:46

Darkpassenger, we're in Scotland. I might ask GP again, although just Googled Homestart and looks like they have it in our area, which is good.

@Elllicam thank you.

OP posts:
CheerfulMuddler · 23/06/2019 20:00

I took Hydroxochloroquine all through pregnancy, my rheumatologist said that was fine. Sounds like you have it sorted.
Babies are hard to read at first, because you don't know how they work, but weirdly, they aren't like humans at all. They're more like little animals. They don't say one thing and mean another - if they're unhappy, they let you know they're unhappy. If they're happy, you know that too.
How are you at reading animals? It's much closer to trying to figure out what a dog is trying to tell you. People do get that wrong and think a dog is angry when it's frightened or whatever, but generally there fairly straightforward if you're listening.