How do I stop comparing 'typical' children to my severely disabled one.

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DS is 9 and severely disabled following oxygen deprivation at birth. For 5 years we never questioned the birth injury but then decided to seek legal advice because it was becoming clear just how severe the disability was and we needed answers. 1 year ago the report came back to say DSs injury was entirely avoidable and the midwife should have recognised the problem immediately and acted. Instead she gave advice that could have resulted in my and DSs death. DS was effectively stillborn and resuscitated.

Until this point I had accepted DSs condition as something unavoidable and just one of those things and was as happy as I could be considering the difficulties we experienced.

Since the report I have been mentally devastated. I've had counselling twice and meet up with parents in the same boat, but I can't stop looking at 'normal' children of DSs age and dissolving mentally. It's like a hurdle I can't get over. Before it was 'it is what it is' and not an issue. Now it's knowing my child should have been running around, talking, able to eat normally and a typical child but for one lazy midwife, is destroying me.

All I want to do is go back in time and change things, but obviously it can't. I'm stuck in the mental limbo of not accepting, which I had done before, and I don't know how to get out of it. So advice please on how to move forward and back to where I was before the report came through.

I don’t think this should be in special needs. I really get tired of that being trotted out, to be honest.

catsbooksandflowers. I agree. This isn't about special needs but the knowledge my child's physical disability was totally avoidable and the shock and depression this has caused me. SN section is really helpful, but almost all ASD related which is a foreign to me as cerebral palsy is to an ASD mum. I think the feelings of grief are universal anyway and it was different peoples perspectives on this I've found really useful.

Fair enough @Catsbooks, I only said it because we were barely a page in when someone come along bleating about how their obstetrician mate isn’t incompetent and have you read (the odious) Adam Kay book etc..

For many of the parents I’ve worked with on medical negligence claims of this nature, they feel deeply ambivalent (and often guilty or shameful) about pursuing a claim against our much loved NHS and comments such as those (although made in good faith) can cause their mental health to nosedive.

I have a son with special needs , when he was a baby I had 4 other friends who had babies at the same time . I spent a lot of time with them and watched as they sat , crawled , cruised , walked , talked , toileting trained .. all while my son didn't .. it was an incredibly incredibly difficult and upsetting time in my life . I was determined my son was going to do all those things and turned my anger and sadness into that . He has now achieved a lot of them except talking very well ( he is now 8 ) I did ms school with him for 3 years and again I faced these issues watching his peers fly ahead of him but again I focus on what he can do rather than what he can't . I even discharged myself from his paediatrician because all she talked about was what he couldn't do and then sent me a letter with his defects in the top corner🙄🙄 . Every time one came through it brought it all back again.. so I guess what I'm saying is you need to find coping strategies , I haven't had any counselling but I would think you may need it .. I appear to be super resilient ( somewhat due to my childhood ) and can manage but heart is broken and will never heal knowing my decision to have a baby means he has to live life like this regardless of who's fault it is , my body did it ... it's ok to be sad and jealous but ultimately it won't change it so I just jog along and do my best .. x

Apologies Mohair, I was far too prickly

It sometimes can feel for me if I post about my DS and I am told to go to special needs a bit like ‘not on the main boards thank you’ and I know it isn’t the intention but it can feel like it, a little. I’m sorry

I hear you @Catsbooks, maybe I was being a bit presumptuous too

Can you use the compensation for adapting your home and providing fun experiences for your ds?
I don't think two counselling sessions is enough. Also you cannot skip the stages of grief you are going through. I tried to do it and it didn't work. You have to feel the anger and pain before you are able to move forward.
In the short term, exercise, engage in therapy, take time to process your feelings and don't feel that you should be over it.

SpankYouMuchly We've been pursuing the claim for 4 years now and probably will have at least 3 more years before any outcome at all. This is one of the reasons I think its so difficult. DS needs equipment and therapy NOW. Before his skeletal system deteriorates further and major surgery will be needed but will just make his back a rigid metal rod rather than a flexible spine. We need a special suit which costs £2-3000 (yes you're reading that right!) and we just don't have that money. His wheelchair cost over £7K and we self funded with family. That goes for all areas of his life. Speech, mobility, therapy and the longer its left the more in pain he will be and that's the bit that's killing me.

But we've come 9 years, achieved so much that we have to just carry on and overcome the challenges. All SN families will say how exhausting it is to keep fighting every day. We'll go on creating happy memories for him and I've taken up an enjoyable sport, will get more counselling, and stop comparing. Funnily enough I've been seeing kids all day, and not once compared! Maybe just talking about it is enough x

You sound like an amazing mum and I’m so sorry that one midwife’s mistake has and will affect your son for the rest of his life.
My dd was born with a severe undiagnosed condition. I don’t think it matters the cause....we all grieve the life we expected and wonder why this has happened.
I only lived that life for just over a year and spent the time comparing to other mums/ families. Now I am a bereaved mum and wish I had stopped comparing and embraced things (much much easier said than done!). As you said, I found the every day fight to get appointments with specialists and the support/ equipment we needed an uphill battle.
Are there any charities that could help with some of the equipment you need? We were completely in the dark about this but it seems like there are quite a few charities offering various pieces of expensive equipment (one of my closest hospital friends has a physically disabled son and has just started to look into charity support).

I can empathise with you as my adult daughter has CP & Epilepsy which was the result of oxygen starvation at birth. I feel that as time goes on, you adjust & find a way of coping. I’ve learned not to “dwell” on things to do with her disability & to not think about it any more than is necessary. Her future looked very bleak as a child but she went on to surprise us & now lives independently with the support of carers. If I really sat & thought about what happened I would bawl my eyes out but there comes a time when you’re virtually cried out, if you know what I mean. The oddest thing I’ve found is that although I regularly dream about my other children, I never dream directly about her. She’ll be in the background but doesn’t ever “physically appear” in my dreams. I think that’s my brain’s way of protecting me. Sending you ((hugs)).

I have no experience but I just wanted to send you hugs and strength and wish you and your ds the very best for the future

Robs20 We have an eye gaze from the Sequal Trust. They are an amazing charity.
Been waiting a year for a suitable stander...a whole year and still don't have one. I scour ebay for SN equipment, have just bought a great standing sling. As for the endless appointments and the 30 mile journey to school each day...…
funmummy48 I regularly dream about DS doing things he will never do, then wake up to the crushing reality. I hate it but nothing I can do except get on with the day. Other mums say the same. Just a little bit of cosmic torture lol.
bobstersmum Thank you. Its really helped to talk about these things xxx