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*maybe triggering* To feel so sad my dc have special needs?

(49 Posts)
HCantThinkOfAUsername Mon 13-Nov-17 21:08:26

I feel so awful. DS1 has autism, doesn't really have friends, really sensitive but I love him to bits, always knew something wasn't quite right, but that was fine.
Ds2 has now been diagnosed with global developmental delay and query other things - it's come as a complete shock. I thought he was just a bit behind and would catch up and ignored what HCP were telling me basically.
I've worked as a HLTA in a SN school so how did I not recognise it?
I feel so awful but it's just hit me and can't stop crying. I struggle with DS1 and his needs and now I've two.
I worry about they're future so much.
Just needed somewhere to write it all down.
It's surely not normal to feel this way?

snash12 Mon 13-Nov-17 21:12:37

This must be hard for you. I can’t speak from experience but There is no blame for this and certainly not on you for not recognising anything sooner. I wish you well for the future - it’s obvious your children have a very caring mother in you.

Aeroflotgirl Mon 13-Nov-17 21:15:37

Massive hugs, I am in the same boat and know exactly how you feel, it's shit. Dd10 has ASD, learning difficulties, and developmental delay, ds5, has developmental delay(a year behind), speech and language delay and ASD traits. Their the only ones in the family with SN, all their cousins are excelling academically and socially, and it sucks.

Brandnewstart Mon 13-Nov-17 21:16:14

My eldest has SEN. It's hard. He's thirteen now and we have our challenges but he has come on in leaps and bounds. I think early diagnosis, and a parent who cares, goes a long, long way. Have you joined any support groups? X

Wide0penSpace Mon 13-Nov-17 21:19:12

I think it's very normal for you to feel this way. Anybody diagnosed with a life changing injury, illness or disability has to cope with the loss of their previous identity and in many cases grieve over this loss. It's the same for their loved ones. Have you read the poem 'welcome to holland'? It describes this. I'm afraid I don't have any advice, but you sound like a lovely, caring mother and your boys are very lucky to have you. Are there any support networks for families you can contact? flowers

N0tfinished Mon 13-Nov-17 21:21:08

Oh I know. Your whole future has changed in one stroke. It changes everything. My youngest has ASD and ID. He’s non-verbal so far. Our whole lives are totally different to the norm. Don’t feel at all guilty about your feelings, I know I felt & still feel the same.

These disorders not only change your DCs lives, they change yours too - I had to give up work. I often feel very trapped at home as we’re restricted in where we can go safely. I absolutely adore him but if I could ‘cure’ him, id do it in a heartbeat.

All the best x

orangelemonlimegin Mon 13-Nov-17 21:21:30

YANBU flowers

Wide0penSpace Mon 13-Nov-17 21:22:34

A link to the poem I mentioned. Not everyone will like it but I think it shows that what you are feeling is very normal x

Zampa Mon 13-Nov-17 21:26:40

I feel sad for the future life my DD lost after being brain damaged at birth. She has severely delayed development as a result and will never catch up. I will do whatever I can for her. She's happy and loved but I still cry about what could have been.

I'm expecting her sibling in the next few weeks and am so anxious about what might happen when she's born and what her chances might be in life. I can completely empathise with how you feel now DS2 has received a diagnosis.

I would say that it's totally normal to feel sad. You're grieving for the future your sons should have had and for your own future.

The prospect of being an elderly carer for my daughter worries me a great deal as well as not knowing what might happen to her once DP and I aren't around anymore.

All I can say is that accept what you can't change and change what you can. You are no doubt an awesome parent.

Good luck. xx

Bobbybobbins Mon 13-Nov-17 21:30:09

I feel exactly the same OP with a 3 year old who almost certainly has ASD and a 2 year old with a delay of some kind. I think it's pretty normal to grieve for what could have been flowers

AuldHeathen Mon 13-Nov-17 21:40:30

OP, we are in a similar situation. We have 4 boys. DS2 had global developmental delay, now learning difficulties. I knew from his birth there was a problem, but kind of took it in my stride. Then ds4 was dx with HFA around the age of 7 and that sort of floored me. They are now young adults, doing okay, but need a lot of support, and still under our roof. They are lovely boys/men but it can be very hard work.

I think you have to accept it as a grieving experience and just work through it. I got quite depressed after ds4’s diagnosis. I could hardly believe it had happened to us again. I hope you can get adequate support. It’s not easy to find.sad

GerrytheBerry Mon 13-Nov-17 21:40:34

I was going to mention welcome to Holland, someone told me to read it when my ds started to be assessed for autism, he's on the spectrum but has other issues (movement disorder), he's special, he's unique I wouldn't change him, sure, I would initially rather he didn't have these issues but if he didn't he wouldn't be him.
Sending you a hug, and strength.
They do say special kids are given to special people.

Choccopop Mon 13-Nov-17 21:40:58

I think it’s normal but doesn’t really get talked about. I hate it when people trivialise asd like it’s just a different personality or something, especially when it comes to the vax debate there are so many who comment things like ‘it’s only autism’ my heart breaks every day for my son.

Aeroflotgirl Mon 13-Nov-17 21:44:26

If I could take these difficulties and struggles away from them, I would in a heartbeat, wou,dent anyone!

AuldHeathen Mon 13-Nov-17 21:45:35

There is another version called Welcome to Beirut - and a 3rd one but I cannot think what it’s about. The Beirut one is about finding out your child has autism.

Abbylee Mon 13-Nov-17 21:46:59

I'm so very sorry to everyone who is struggling. Our ds has dyslexia which seems very little. But he's struggled every day since he was 6. He's now 20. Our dd wasn't dyslexic but was injured in a car accident by a texting driver. Head injury. Not the same girl who left home that day. My heart is broken.

RavenWings Mon 13-Nov-17 21:48:30

I don't think it's unusual at all. It's grieving the loss of the child you thought you would have, and their future, and a fear of what is to come.

I think it's hard to talk about though, because a lot of people just get told "oh you're so amazing, you cope so well blah blah" and there can be a bit of shame attached to saying you miss what you thought life could have been - for you or your child.

LordSugarWillSeeYouNow Mon 13-Nov-17 21:49:35

My 2 wonderful nephews are 4 and 5 and both have autism ( both at special school ) and whilst it's bloody hard work for my db and sil they are an absolute joy and bring them so much pleasure.

It's a massive shock, we didn't notice with youngest dn and he is probably more "severe" than his big brother...

I too have a dc with autism and am now thinking the same about dc2, I know I can handle it but feel scared too iyswim?

flowers and wine

Msqueen33 Mon 13-Nov-17 21:50:39

I have two children with special needs and it’s completely altered my life. They are the only kids with autism in the family and all other kids are excelling. I’ve had to give up my job and pretty much my life. I’m not the same person and although I adore and love them I will never have the freedom I once did and have limited choices. A part of me regrets having kids at all. But I can’t tell anyone else that. The constant battle. With services with schools. My youngest is 5 and non verbal. And it breaks my heart.

AuldHeathen Mon 13-Nov-17 21:51:05

Abbylee, that must be very hard. In a sense l’ve always been relieved nothing specific caused my sons’ problems but it must be so awful knowing it was someone else’s carelessness that caused your dd’s head injury.

Aeroflotgirl Mon 13-Nov-17 21:51:17

Abbylee 💐💐💐 massive hugs

HateHomework Mon 13-Nov-17 21:51:23

Feel for you mate, similar here...
Take care of yourself x

Abbylee Mon 13-Nov-17 21:58:04

Thank you auld and aero. Very much. I don't like to admit that she's changed, but she has. I am tiresome about telling people that texting and driving is horrible. I never feel as though anyone takes me seriously. 2 accidents in two weeks. She was stopped at a light and the cars both hit her bc they weren't looking. I miss her.

PoorYorick Mon 13-Nov-17 21:58:12

Good God, of course it's normal. You can love your children but still hate the circumstances that their special needs create...every parent wants their child to be as physically and mentally healthy as possible. Nor would I worry about not having spotted it yourself...teaching or caring for someone else's children is a mile away from your own and you can't possibly have the same professional distance.

I hope you get the support you need, and your kids are lucky to have you as a mother.

AuldHeathen Mon 13-Nov-17 22:12:24

A colleague of my dad (years ago) sustained terrible burns in a crash caused by another driver’s drink driving. His then fiancée died. He did rebuild his life, had a career, married and had children, but he had years of skin grafts etc. The other driver was sent to prison. 8 years?? I’m not sure exactly. Around the time the drink driver was being released, the colleague said to my dad he was still angry, that the guy had done his sentence, would get out and nothing much would have changed for him. I’m not sure he was right that nothing would have changed for the other guy, but l also think the victim was perfectly entitled to be angry, bitter even. Although anger can be so exhausting, it’s also understandable when someone else’s wanton carelessness destroys the life you had.

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