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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think "not again?".

19 replies

ToastyCat · 08/01/2025 01:22

Hi all..

You can absolutely judge me. I genuinely feel like the worst parent in the world right now.

My DS is 4. He has multiple diagnoses, including autism. He's happy, healthy, and loved, but it's been difficult from being absolutely gaslighted by medical professionals to going through many tests and assessments, 100s of appointments, etc. It's been hard. It still is. He's struggling, and we're waiting to see if he'll get into SEN school, which I imagine will be another uphill battle, but it is what it is.

Before all this started, though, we had another baby. There's 21 months between them, so I didn't have another baby knowing we already had a disabled child - they were signs but nothing solid and nothing to indicate how severe they'd be. If I had known, I wouldn't have had another child ( I'm glad I did. I love them both to pieces).

DD is 2. She was an easy baby really but showed some similar signs to DS, but the hardest thing was she was extremely delayed - she didn't sit up, crawl, wean, walk, etc, until she was 14-21 months old although she has started to regress.

We had her tested for the same disability my DS has, and it came back negative, and I'm ashamed to say this, but I was so happy, I thought that meant we could expirence having a non disabled child ( I genuinely feel disgusting saying that ).

When my son was having his autism assessment, we had a home visit from the specialist HV, who mentioned DD and said to see the HV as soon as she turns two as she is also showing signs.

We have raised our concerns as has nursery, and she is under physiotherapy, portage, neuro paediatrician, specialist teacher at school, and probably speech and language in the future so I am on the ball with it and trying my best.

DD is difficult, but what 2 years old isn't? However, I'm awake and really upset because when the HV saw her, she agreed with everything we've said and referred her to all these services, and today, the specialist teacher saw her, and said she can see exactly what we and nursey are talking about which of course she does but I fully convinced myself she would observe her and be like " she's fine" and all our concerns would be squished.

I guess I'm just facing reality now, but i just don't know what the future holds with two potentially disabled children. It's just not what I imagined, and I'm just feeling really low that we're going to have to go through it all again and then obviously go through the rest of our lives with it.

I just, I don't know, I really hate myself at the moment because I love them both so much no matter what, but it's hard.

OP posts:
SouthernButterPie · 08/01/2025 01:28

Oh mama please don't feel bad for yourself. You sound like you are doing an amazing job.

I know it's tough, I'm disabled myself and have 3 disabled nephews.

Somehow we all find a way. 🌷

Princessconsuelabananahammock9 · 08/01/2025 01:31

Being a special needs more is so hard.

Be kind to yourself. It's exhausting. 💐

PoppyLupin · 08/01/2025 01:31

I think you are being too hard on yourself, calling yourself disgusting etc. I agree with everything SouthernButterPie wrote

pikkumyy77 · 08/01/2025 01:41

Just try not to beat yourself up about it. There is no virtue and much harm in focusing on choices you made (such as having a second child) when you didn’t have perfect information. You meant well. You love your children. You will find a way.

UpUpUpU · 08/01/2025 01:44

Oh OP. You have every right to feel how you feel. Having one disabled child must be hard so having two is harder.

You have no judgement from me, only an unmumsnetty hug and validation of your feelings

XWKD · 08/01/2025 03:09

You're going through a very difficult time. Allow yourself to feel what you feel.

Noodlie · 08/01/2025 03:09

You are definitely not a bad parent, quite the opposite. It is not a sign of a bad mother to want the best for their children, and not want them to struggle to cope with the world, with an uncertain future. It is hard, and stressful, and worrying.

And the day to day parenting is really difficult, it’s not wrong of you to wish you didn’t have to face that, and allow yourself to process the loss of the future you had imagined. It doesn’t mean you don’t completely love the children you have. It’s just an acknowledgment of the (hard) truth that life would be easier for them, and for you, if they were neurotypical, and could just sail through like their peers.

Don’t beat yourself up, you’re their mum, their world, and no one can do that job better than you can. They can still live happy, meaningful lives even if they don’t complete the traditional milestones, and in fact with two they might “get” each other and be better together than a more isolated singleton?

Candy24 · 08/01/2025 03:12

Hey dont you dare be hard on yourself. I have several children 2 with diagnosis 1 possibly about to be. It is hard but you get in a rhythm. Praying for peace for you

ToastyCat · 08/01/2025 11:03

Thank you for being so understanding and kind, everyone.

I think I just had a wobble last night x

OP posts:
AnneLovesGilbert · 08/01/2025 11:07

Please use kinder language about yourself, as you would a friend going through the same thing. It sounds really difficult and in the face of that you’re exactly the mum your lovely children need and would have wished for. Have a hug from me, you’re doing an incredible job and you’re allowed to find things shit and unfair 💐

MustardGlass · 08/01/2025 11:09

I think anyone would be thinking the same, it’s not a reflection on how much you love your children just a reflection on how hard it is.

ImustLearn2Cook · 09/01/2025 00:31

UpUpUpU · 08/01/2025 01:44

Oh OP. You have every right to feel how you feel. Having one disabled child must be hard so having two is harder.

You have no judgement from me, only an unmumsnetty hug and validation of your feelings

What UpUpUpU has said. 🌺💐🌷🌸

Lentilweaver · 09/01/2025 00:34

Unmumsnetty hugs to you. None of this is your fault and you are feeling very normal things.

zeibesaffron · 09/01/2025 00:45

No advice just sending you a big hug. - you sound like an amazing mum to me ❤️❤️

Fishandchipsareyum · 09/01/2025 00:56

My eldest was a surprise diagnosis age 9. PDA autistic but I thought she was just shy and highly sensitive. My youngest was around 1 at the time and I just was hoping she was not the same, she was then diagnosed age 3. It's really been difficult for me emotionally. I can't even explain how much. I've come to realise my husband is also neurodiverse. His whole family appear to be ( hence I've not been able to have a relationship with them ,so it all adds up now unfortunately)

Candy24 · 09/01/2025 04:06

Fishandchipsareyum · 09/01/2025 00:56

My eldest was a surprise diagnosis age 9. PDA autistic but I thought she was just shy and highly sensitive. My youngest was around 1 at the time and I just was hoping she was not the same, she was then diagnosed age 3. It's really been difficult for me emotionally. I can't even explain how much. I've come to realise my husband is also neurodiverse. His whole family appear to be ( hence I've not been able to have a relationship with them ,so it all adds up now unfortunately)

Its funny my daughter being diagnosed has made me see my husbands quirks for what they are.lol

chergar · 09/01/2025 04:16

Yanbu I think you are grieving for the life you hoped you would have with your daughter, and as you don't have a diagnosis just now you are thinking worst case scenario, this is all normal. It doesn't mean you love your children any less and tbh it is how most parents would feel in your circumstances, you are just honest enough to admit it.

Climbinghigher · 09/01/2025 05:37

Of course it’s fine to feel the way you do. My eldest is now adult, but non-verbal, autistic, requires 24/7 care. You are at a really hard age with your ds still, let alone having the worried about your dd.

when ds2 was 2-3 he had significant speech difficulties which I thought was going to end in a diagnosis (he was given a tentative one) & I posted a very similar post to yours on here. In fact he suddenly sorted himself out and now makes a living from his speech - so things can change rapidly when the kids are small. It sounds like you have everything in place for dd (I did the same for ds2).

Try and surround yourself with friends who have d children with similar issues - it really makes a difference to how supported you feel xx

Katemax82 · 09/01/2025 07:37

I have an autistic 18 year old. When I had my youngest I didn't think he would also be, my daughter is NT. However my youngest is harder work than my oldest ever was even though the process of getting him diagnosed is taking longer. I often feel guilty for steaming ahead with having another child who could potentially be autistic but I love him so much I wouldn't be without him. Now I'm pregnant with a 3rd son (unplanned) and have resigned myself to the strong possibility he could be autistic, knowing I've now got years of experience with it

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