2nd autistic child - why us

[nickjchelm]

Hi all

As the title suggests my wife and I are going through a horrible time and this is our story.

I haven't really got the spare money for therapy and the NHS have got bigger things to worry about at the moment so I'm writing this at 5am.

Ok firstly our daughter is 3.5 years old. She's amazing and I love every fibre of her body but she is autistic and has learning difficulties.

It's been a hard run seeing friends and family members kids leave her behind, not to mention all the funny looks from other parents. The present is a constant struggle and the future is a cause for untold dred.

Birthday's are not a happy time they are just a mark in the road where she falls further behind where she should be.

At 18 months the pediatrician said (wrongly) she was ok and referred us for speech therapy. The speech therapist said she's not autistic so at this point we started trying for a second child.

Fast forward a few months and my wife is at our daughters 2 year check up. Different pediatrician who instantly tells my wife our daughter is autistic. Fills her hand up with leaflets and waves her on her way.

We're both obviously devastated and decide to stop trying for a second.

My wife takes a pregnancy test and yep she's pregnant.

Cue a month of heartbreaking conversions. We know the risks of a second child being autistic (one in 5 ish). All options are discussed with me strongly on the side of this being fate and feeling very protective of our unborn child. My wife was pessimistic and worried about not being able to cope and the negative effect less attention could have on our daughters development.

We decided to go through with the pregnancy.

Our son was born on father's day last year.

He is now 9.5 months old and I think clearly autistic. I am no doctor but if anyone has been through this process you become an expert of sorts.

What have I/we noticed...

Eye contact - He actively avoids eye contact. If you hold him up in front of your face he'll do anything he can to not look you in the eyes. From a distance he's much better but up close it's really noticeable.

Name recognition - He responds to his name probably half of the time. Sometimes you can be really loud and right next to him and nothing.

Resistance to touch - He hates to be held, pushing away if you hold him close.

Head wobble/shake - He's recently developed this head shaking movement which he does in his walker or when sitting watching TV. This was the straw that broke our back and we couldn't hide from it anymore.

These are different symptoms to our daughter but clear signs nevertheless. I am not writing this for kind people to dismiss the symptoms as usual activity. It's with sadness that I write that I know he is autistic.

My wife and I are sick with worry. I'd say me particularly as I was so adamant that we should go through with the pregnancy.

I feel I have caused my wife all this pain she is in now and will be in moving forward.

We have watched our closest family friends have kids at exactly the same time (within a week of ours) and both be 100% neurotypical. We video called them yesterday and their baby is waving away at the camera. Little things like that regular parents wouldn't bat an eyelid at but for us it hammers home sadness.

Only people who have been through this will know what it is like to get this feeling in the pit of your stomach that there is something 'wrong' with your child.

We know we have just got months and years of difficulty and heartache. It's like a creeping feeling of uneasiness that just gains momentum until it's the only thing you can think of.

We really do try and live our lives as good people and think we are being punished so unfairly.

I don't know why I am writing this, probably just to get a load off, I can't sleep that's for sure.

Hi all

Thanks so much for all of the messages. I can't reply properly now as I can't really be too attached to my phone.

Plus I am sure my wife wouldn't appreciate me sharing all our problems so openly.

I'll reply properly when I can but I just wanted to say thank you for your supportive posts.

I have two with asd and went through the same turmoil about whether to continue my second pregnancy. The only thing I would say is that my two, whilst both autistic are completely different. My ds is very severely disabled and although I love him to bits, it has been devastating at times. I do still grieve for what I won't ever have but my daughter (youngest) still brings me a lot of joy. I have over the years thought about whether I made the right decision to have her, knowing there was a chance of her being autistic. However, she has a good life, is happy and is much loved. I also think that being much more clued up the second time around meant that I was able to put in more work into helping my dd through interventions such as ABA and getting her a good school which could help her. With my ds, we were just coping day to day to start with.

WeMarchOn thank you so much for posting. I love hearing from more able adults with asd. Would LOVE to spend a few hours with you.
I would have a zillion and one questions though and would drive you insane. 😂

OP, firstly I have no doubt your instincts are spot on! I am the mother of a severely autistic adult dd who also has severe learning disabilities. I know all too well the heartache and difficulties. However, given time, I think you will stop comparing your friends’ dc to your own. You do eventually see your own dc as individuals in their own right, accepting they are just different. Our dd is 26 now and has the speech of a toddler. She has grown into an amazing young woman, stunningly beautiful with the figure of a model and, most importantly, a fantastic personality. Everyone loves her and she is very spoiled by her amazing carers despite her quite frequent meltdowns.
She has her own gorgeous apartment in a small, managed complex close to home built for young people with learning disabilities. She is incredibly happy and we have a very close relationship. Fingers crossed your DC won’t be anywhere near as severely affected but if they are they can still have a very fulfilling life but one that leaves them free to enjoy THEIR world rather than struggling to live in what we recognise as being the “Normal” world.

No, it definitely isn’t the life I would have chosen or possibly envisaged for her but I wouldn’t change her for the world. She is everything to DH and I. (Dying to see her again at the end of her centre’s 12 week lockdown 🤞)

Another here with Twins who are autistic. they are nearly 7 now but completely different in their strengths and weaknesses.

We also have an older Dd who is 9, who has some clear ASD traits and is being assessed on the pathway.

Each is completely different to the other two. They all are in mainstream school. One Twin has a full time one to one, the other has a shared one to one. The eldest has general extra support.

I have grieved and cried. I have ranted.

I believe Roosevelt said "Comparison is the thief of joy" and this so true.

This week during lockdown our house has been full of laughter, noise and lots of love.

Yes it's bloody hard. No, I would not have chosen this path. But it does get easier in lots of ways.

We've been down lots of paths ABA therapy etc and they weren't for us.

Become an expert on your children. Grab any training offered, check out what's called the "Local Offer" on your councils website. Google local ASD charities.

The brilliant Senco at the school when I was in bits at the suggestion my Eldest also has autisim, pointed out that I was already using a lot of the support tactics at home (which actually masked her traits) so was well placed to support her.

Let yourself be upset, it's natural to mourn for the loss of what we expected life to be like.

But make sure you hold your wife a little closer. She will be scared and upset too.

You will get stronger. There will be days of Joy. All is not lost.

Different autistic kids develop in different ways. My two are very different, different again from my friend's autistic child.

We have 4 autistic children and I'm autistic myself. There are plenty of hard times and also plenty of happy times. There are challenges that sometimes seem insurmountable and other times life becomes easier and more stable. The most important thing I've learned is what works for others may not work for us and I no longer judge our lives by anyone else's. A few years ago we never left the house as we had 3 young ones that just couldnt deal with the overstimulating outside world.... with lots of hard work and most importantly time ... we go out as often as other families. It may require more planning and some adaptations but I honestly can say we have never been happier.

Whilst i totally understand feeling overwhelmed I would caution against feeling too negatively about the diagnosis. As an autistic adult the biggest issues I've contended with have been around self esteem and feeling like I had to be someone else to fit in. Now I am just myself, I accept i work differently and am so much happier.
My favourite saying:
If you've met one person with autism....youve met one person with autism.

I know it's hard but please look at the positives. You are blessed to have two healthy children. Stop comparing them to others or worrying about 'funny looks' from others. You need to be your children's strongest advocates. You seem almost embarrassed of them, it's sad to read.

Takemedown the OP is struggling at this moment in time and reaching out for support. I think your post is inappropriate. My son is autistic - we love him dearly - you will compare your life to others that is simply being human. However trust in the fact that things will improve - stay strong it is early days.

This is exactly the right place to wail and stomp and grieve. There are people on here who get it.
Be kind to yourself.
I'm not worrying in any way about your kids, you sound like you know them, you know what they're up against and you'll be their strongest and best advocate for life.
And of course you love them but that's a given.
Stop feeling guilty about the situation. Get some therapy/help. Make damn sure you get respite and carve some time for you and your wife to keep your relationship alive.
What comes over to me is how much you love your little family.

My daughter is also autistic. I did say I know it 's hard but it doesn't have to be the worst thing. I hope the ok can come to terms with it and see the positives.

Its not a death sentence. Chances are either you or your wife or both of you are autistic too if both your kids are, and youve done ok.

We are all autistic in this house. I used to get upset about it but theres no point. Ive made friends with other people locally who either have autistic kids too, or at the very least "get it" and we've adapted our lives to be autism friendly.
Theres loads of advice and support out there online. Some real life support is hit and miss according to where you live, but please dont compare your lovely children to other peoples children. They are no better and no worse. Celebrate who they are, and try and let go of what your fantasy children were.

I have adult diagnosed ASD (only child). I compare myself to others my age. I’m sure my parents do as well, though they try not to let on. It’s tough. I can’t help compare (myself unfavourably) but I also count blessings and think about things others and I thought I’d never do and I achieved.

One thing to be glad about is early diagnosis. From MN I know it is a long hard slog, but there help, especially for children.

You sound so sad, that I cannot resist replying. While I do not have autistic children, both of mine (adults now) have mental illness. There were years when I was so depressed, and went to a very wise therapist to help me through. One thing she asked me that really helped was: "who should this happen to?" Meaning: someone will have children with these challenges; so who should that be? She also asked " why not you?"
I had to really think about that one! But it helped me to not feel sorry for myself and to work at helping both the best I could. By now I occasionally hear people saying "I am glad he has you for a mum" and I feel much better about it all, and I do treasure my relationships with both. I am still advocating for each one, and i do worry about their lives when I am no longer here, but I am enjoying my life in many ways. You are still married, so if you can keep a good marriage, there will be many joys.

Such a mix of comments, it's almost impossible to acknowledge them all.

Thank you to everyone who took the time to tell their story or offer their support.

A couple of posts point to either giving up on my kids or being embarrassed of them. That's certainly not the case.

My wife and I have already been on every course we've been able to.

When we found out about my daughter I read More Than Words cover to cover in a week. I printed picture boards, made pecs cards and remodeled the house to suit her.

So no I haven't given up on them.

My daughter is amazing, I would do anything for her but it is difficult that's all. Family functions, holidays, supermarkets, doctors appointments etc etc just all are tough.

I just have to pick myself (ourself) up again and do it again.

I am sad, very sad but almost guilty as well. My wife said she would not be able to cope with a second and now she's got to go through it.

You don’t at all sound embarrassed of them! Or that you’ve given up. Have you read a book called ‘The reason I jump’ It’s written by a non verbal boy with autism who learns to type. It’s his answer to lots of the questions that are often asked by people adults who don’t have autism. It’s a beautiful book. And is only short.

Guilt is a strong emotion to suffer with. It’s painful. I hope that it eases at some point.

I just wanted to add that I've found therapy for myself incredibly helpful in providing a safe, no judgemental space where I can unburden all the feelings you've described. You or your wife may also find it useful.

I can't offer any advice as my husband and I haven't had anymore children due to the chance our son is autistic, he's nearly 4 and we're waiting for assessment, I don't think I could do this again, the stress and anxiety, the hit on our marriage.

The hurt over comparing to other NT children I do understand and it still gets me now, it's not quite as raw but it's still there all the time, innocent comments from people, stories and anecdotes about what funny things their kids say when my nearly 4 year old is only just about speaking 1/2 words.

You aren't embarrassed of your kids, or it certainly doesn't come across that way, I was worried, confused, anxious, scared and felt so so alone, and I still do at times. It's frustrating but I guess with your son, you have to watch and wait and see what happens as who knows how he'll develop and of course your daughter will continue to develop too. I worry that I've spent so much of the last couple of years worrying that I've actually missed out on so much of my sons toddlerhood which I'll never get back but I can't change how I felt. I don't want to look back in a year? 5 years? 10 years and think I wasted so much time worrying when I should have just enjoyed him. He's changed and developed so much for the better, he isn't the same almost certainly autistic child he was 18 months ago.

I don't know the answers but I think you need to cut yourself some slack, you've two small children, which without additional needs is hard, as is keeping your relationship with your wife afloat amongst babies and little kids, and assuming you also have a full time job too.

Just be kind to yourself, support your wife and do whatever you need for your children, and you will do it all again, you just need some time to work through it, like pp have said, grieve for what you wanted/thought you'd have.

I really feel for you. I remember feeling sick with the ever present worry about dc1 who missed all his communication milestones. I had one of those books which explained what they should be doing and we were just nowhere near. It was terrifying. I couldn't imagine him functioning at school or living independently. I also had a load of family members who thought I was over reacting, totally unhelpful.

I really wish I'd been able to see into the future. He's doing well at mainstream secondary school and although socially awkward, is so funny, articulate and kind now, when he's out of bed.

I was then utterly convinced that dc2 was also on the spectrum. He used to be a screecher and liked to rock his bouncer chair so hard at 9 months old I was convinced it was a sign he needed stimulation. It wasn't. I then worried about regression for about a year once he developed speech. It didn't happen.

It's the worst thing I've been through but life is so different now. Try and look after each other, it's incredibly tough on any relationship.

Coming to terms with all of it and getting your head round it is a process. Your kids are really little. It will be hard, but youll find your feet.

Acceptance takes time. I have two autistic DC and two neurotypical DC, I love them all. It was hard when the boys were diagnosed and I went through the grieving process of the child I expected versus the child I had, no one at all gets the child they expected but all those expectations about their normal course of development went out of the window. I went through the why me/us stage. I went through the blame stage where I micro-analysed every tiny thing I did or didn't do during pregnancy and the early years to decide if I caused it.

Ultimately though - and this is not me trying to belittle your feelings - it is what it is.

I recommend therapy, the same as a PP has mentioned. Being a parent-carer for a disabled child is a totally different ballgame to being a parent, there is a lot of overlap for certain but there is also a lot to deal with that's unique to parenting children with additional needs. You need a safe space to dump off your thoughts, sort through them, and deal with your emotions in a healthy way as part of caring is to also care for your own wellbeing.

Hi everyone,

OP, sorry to hear you’re having such a worrying time. I completely understand as I’ve just been reading this thread as I am having the same worries. I am absolutely sick to my stomach with worry that there is something wrong with my 6.5 month old. He’s so different to other babies, he doesn’t make eye contact unless he’s on his back.. He doesn’t smile socially (although he use to smile at us at 3/4 months)... he doesn’t notice us when we walk in to the room, he stares and fixates on things, very little interest in any toys. He’s also behind on all milestones bless him :( although I appreciate boys are usually lazier so I’ve never been worried about this. It sort of hit me at 6 months when I thought I can’t use the “serious baby” excuse any more. We have no history of ASD in the family not even suspected or undiagnosed, so I am really struggling and thinking it just can’t be but I know deep down there is something wrong.

I’m really struggling with it all. Was just hoping to hear from anyone who has the same concerns with their 6 month old and with therapy things really improved? We’ve been in contact with early intervention services and we’re getting started with some things at home (a lot of which I was already doing anyway) until services re-open again. I’m trying to focus on helping him rather than getting myself so upset every day. Xx

I have two (probably 3 really) autistic children.

One thing I haven’t seen on here is how much they can change between babyhood and childhood.
My eldest boy (the probably autistic one) is more aspergers in presentation and has never caused the sort of worry that meant we sought diagnosis for him.
My next boy was hard work as a baby, didn’t like people, didn’t like being touched, Very sensory averse, developmentally delayed in gross motor and speech. Was quite obviously autistic looking back, was diagnosed at 7 after a long fight...is now 10 and whilst has a slightly different outlook on life, is doing well, will most likely stay in mainstream and have a fully functional adulthood with probably just a slightly different outlook to others. He is not “outgrowing” his autism per se, he’s just developed very good tactics to deal with himself.
Adversely our youngest son was a bright sunny baby who met all of his milestones and flagged no concerns until he was 5, was diagnosed at 6 and finds the world a little more difficult to navigate.

My point is that you cannot know for sure how your children’s autism will affect them in the long term, so focus on the here and now. Put the things in place that will support your family now and grow with them as your children grow.
I hope you find your peace, it will come. I think grief is always the first stage of dealing with a diagnosis like this.

@JoshLymanIsHotterThanSam

Thank you for that message! It’s made me think a little differently. I don’t know what the future holds for his, if my son is autistic or not as he’s only 7 months but there is definitely something not right. Did you do therapy with your children? Looking back did you notice anything when your children were babies?

@Rafflesway Oh my gosh i have just seen this sorry, absolutely send me a message x

I can empathise greatly, but ASD is such a spectrum that I've learnt many don't know what it's like to experience the other end of it. Perhaps if it were ASD in isolation but ASD with learning difficulties is really hard, my daughter has other conditions too.

What you are feeling right now is grief, but you already know that because you have one child already. A grief that pops up at each milestone, I don't have anything useful to say but I wanted to just say. I'd feel the same.