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.

Hello, didn’t want to read and not reply.
Reading your post I can feel how difficult things are for your family. I’m sure your children are very lucky to have you both and as you both appear very pragmatic, I think that will result in the best opportunity for your children. Please don’t focus on the ‘grass is greener’ when looking at others. Nobody knows what lies ahead for anyone and you have been blessed with two children. Take care.

Comparison is the thief of joy -you will drive yourself insane by doing that

I'm a bit confused as you talk about the NHS but you also talk about paediatrician checks at 18months and 2 where you were given a diagnosis -this seems more the American system as it's highly unusual to receive an autism diagnosis so young

I'm only asking that as therapies etc are different so wondering what to advise

Anyway..... having a child with special needs means you go through a kind of grieving process except you aren't grieving a loss of a child, you are grieving the loss of a potential future -this is completely normal and just like bereavement grief you think you are ok and then it will jump up and bite you in the bum.
To get through and enjoy life you need to look for the joy, the moments to celebrate and reflect how far they have come -your own child, not everyone else's.

I would do some research into intensive interaction I totally, and definitely while they are both so young. It will absolutely do no harm and can make huge differences in terms of social communication

If they are both autistic there will be hard times ahead and there's no way of sugar coating that, but life can be just as fulfilling -just in a different way

We have twins with autism. On bad days I will admit it feels not fair. On good days we are glad that they have the other one who 'gets' it. Stay strong and try to remember the positive x

We were told our 2.5yo DS was clearly autistic 3 months ago. He had everything you are describing. Our ST/OTs are careful not to say it but the pediatrician said it was obvious to her, and she said it would be hard. I was ready to accept having only one child as I didn't think we could cope with another or afford more therapy.

What the pediatrician also said was that even though the risk of a second child being autistic was high, we shouldn't be afraid to have another kid, that it would be good for DS to have a sibling and even if they were both autistic they would learn a lot from each other.

This really helped me. I don't know how we could possibly for afford therapy for two. But I am a little less afraid now and willing to try for another down the line. I don't know if that helps in any way, just wanted to wish the best for you and your family.

DH really laughed at that - that the pediatrician couldn't offer any advice except to have another kid 😁

That sounds hard. I agree with what someone said previously about a kind of grief when you have a kid with learning differences. A grief for the future you’d unknowingly or unconsciously imagined. I have a daughter with a physical disability and it’s hard to see her friends have it easier or reach milestones sooner. Everyone says ‘don’t compare’ but I’m not sure how to do that. Because I do compare. But maybe there’ll be a time when I get to that stage. And I hope there is for you too. Some kind of peace with it all. I don’t know loads about autism but I know if varies in how much it affects someone’s day to day life. So I guess it hard to tell yet how it will affect your children’s life in the future. The sound like they must be happy with how much you love them.

I’ve got 2 with autism
It’s fine..you learn to adapt .we used one of the bedrooms and made a sensory room .you soon become an expert on your child.
This should be a happy time for you ,try to cherish your children,you will regret it later if you don’t ,things will settle down ,you are a normal family ,so just get on and do normal things
I knew when my eldest was 6 months old he was autistic,
He’s 21 now ..still doing his Alevels ,but getting there .
My other child with autism is 11.
I’m not going to say it’s a walk in the park ,it’s not
But read all you can ,ask for help ,
But please please don’t feel sad for your children ,cherish them ,make sure they know it is ok to be themselves
My youngest miaows a lot to communicate,but that’s ok ,even in public ,that’s ok ,because that’s who he is .
You can do this
You have to do this
Your children need you x

Again didn’t want to read and not respond.

I have worked with children and young people with ASD and their family. I also strongly suspect my Mum and DD 23 are on the spectrum.

I guess I understand the sadness of ‘family life’ not meeting ‘typical’ expectations and the challenges that adjustment in expectations presents and the compromises that are a consequence.

I do hope you and your wife develop a deeper bond rather than it creating a split. I suspect that is your major challenge; that one of you doesn’t feel that it would be easier to do this alone or think they have no option to walk away leaving the other to cope.

I would say you make each other your priority. The children will always demand of your resources, thank heavens; it is their survival mechanism. However, find a space to give and accept each other’s support and love (sorry if a bit cringey).

Now immerse yourself in the NT community. This is your tribe and they rock. 🌈

I've been where you are - it's hard. But then you get on with life and one day you look at your child and are so proud of them, and it no longer matters what others are doing. There is hope and life may not be what you imagined, but it can still be pretty awesome. Look up the Holland poem.

Op, I also have 2 autistic children and 2 neurotypical children. The ones with ASD are 11 and 8. Yours are young now, they will progress in their own way and may surprise you in what they are able to do. I understand that feeling though l, that deep feeling in the pit of your stomach, that something is ‘wrong’. It takes a while to adjust and you will see other children surpassing you yes in development - it’s a hard pill to take. But you will come to be able to celebrate their own achievements. There are many parents of multiple autistic children on Mumsnet, you are definitely not alone.

This sounds really tough for you all and I imagine self isolation is making it harder too. Have you sought help for yourself to talk through all your emotions about this ? Even just through the autism soc helpline or something? It is good you have posted here as there are very wise people on these boards.
Have you had any help from professionals in learning to deal with the autism in a way to make life easier and less overwhelming for your kids which then makes it easier for you? I found that really understanding my sons sensory needs was a key to helping him. There are lots of books that help and give suggestions of fun games that can meet your kids needs through play like The Out of Sync Child Has Fun. Some books and website have sensory assessments so you can figure out which senses are over active and which under and adjust accordingly. Weighted mats, chewy toys, swings, music, etc but finding the right ones for your child. Google sensory diet for info.
Your feelings are valid and unsurprising in the circumstances but they don't need to control your life. Acknowledge them allow yourself to feel them, and then let them go.

I do hope you and your wife develop a deeper bond rather than it creating a split. I suspect that is your major challenge; that one of you doesn’t feel that it would be easier to do this alone or think they have no option to walk away leaving the other to cope.

This 👆🏽
Please give this much consideration.
We have 3.
I hear, feel and understand every sentence you’ve written. It will be ok, but you will need each other for it to be ok ❤️

I have a child with and and adhd. I totally understand the feeling of feeling different and being left behind and the grief.

I think you just have to stop comparing, every time you catch yourself doing it. It might be easier to do this if you develop some good friends who also are in the same position as you. Support groups are a really good start - they are invaluable and you can share victories and bad days with others who get it, rather than always looking at people who appear to have it all (this isn't often the case)

My heart goes out to you, this sounds really really tough.

I have two autistic boys, so know something of what you are going through. Yes, it’s not going to be an easy journey, But at this stage you have no idea how they are going to progress. My eldest did t like cuddles or make eye contact from a young age and it was clear from 6 months that he was different. The youngest we thought was quiet until he went to school and then there were obvious differences between him and his peers. Please just enjoy your children now and the things you do with them now will bear fruits when they are older. They are resources online (National Autistic society) - I know your children are young but you have time to sort out where they will go to school. When my second child was diagnosed, I was very upset - I felt I was grieving for the child I had ‘lost’ (if that makes sense). My boys are now (stroppy) teenagers with one at a grammar school and one at a special school and yes, life has been hard, yes I sometimes ‘wish’ for normality, but it was not what I was ‘given’. Please don’t compare your children to others, that way heartache and unhappiness lie. The SEN board on here is very helpful. But you must support each other as you go through this, I won’t claim it’s easy, but you can’t carry round these feelings - they will ruin your time with your children.

OP, I hope you don't mind me saying, but you sound terribly negative about your children. I know it must be so hard, but really, they do have so much potential, and you really need to look for the little things, rather than the big picture, and also stop comparing them to other children!! I am currently studying autism, as I work in a school, and doing home learning when I'm not on rota.
There is hope, and eye contact can improve. I suggest you google parent support groups, to try and find people who can relate to what you are going through, and help you seek out the positives in your children. Maybe look at doing an online course as well, to give you more of an understanding, the ones I have been doing have video testimonials from parents, and I promise you it is not all gloom and doom!

Just to add, in one of my courses, there was a mother of a girl, who discovered her autistic 3 year old daughter had a talent for painting, you can Google her online, Iris grace painting, they had a book published too, as the little girl developed a bond with a pet cat.

I just wanted to pip in and offer my sympathy. Couldn’t read and go.

I work in a school for children with additional and complex support need, many of whom are autistic. I understand how fearful you must feel about your future as a family and wanted you to know that it’s okay to be scared.
Seek support from other parents in the same boat so you feel less isolated with your concerns...it’s incredible how sharing your ‘normal’ with other people who know the same ‘normal’ can make it feel just normal normal. There is much grounding and comfort to be found in a shared experience.

You need to become an expert for your child. Take training courses, demand therapies and research everything you can.
‘Intensive interaction’ is an amazing approach.

I have a son and a daughter with autism. My son was diagnosed at two and a half and it broke my heart. My daughter was unplanned and my son was eight by then, life was very difficult and I didn't know how I'd cope.
I first suspected my daughter had autism at four months old and I knew when she was eight months old so I'm not going to tell you that your concerns are unfounded.
The GP referred her to my son's paediatrician at thirteen months and she had a diagnosis the week of her second birthday. This time I took it in my stride knowing that I could do it again. It wasn't until she fell apart at fourteen that her diagnosis hit me and I grieved for my girl.
My son is now 25 and my daughter is 17, I've accepted that they probably won't ever be independent and for the most part we are happy in our little bubble. They are both rocking the lockdown like professionals because neither of them crave social interaction so that's a blessing.
I won't lie to you and tell you that there haven't been times when it has been really difficult but I can tell you that when they have had achievements then the high I have felt at those times is second to none.
The best advice I can give you is to stop comparing your children and your lives with family and friends with NT children as that is where heartbreak lies instead compare and measure the progress each of your children will make over time.

Hi, I just want to say that my DS was similar at that age, absolutely no eye contact, wanted to be left alone - not touched and held, we thought he may be deaf because he wouldn't respond to him name.
He is now an amazing 6 year old - he goes to mainstream school and where he is behind socially, he is ahead in learning and is so intelligent. He goes to rugby and football training, and although he is behind the others in terms of skill, he goes there happily every week and is socialising with his class mates there, and he is improving bit by bit.
My point is, you see your new baby with these 'traits' and are thinking the worst - it might not be that bad at all.
For me the most important thing is not to compare him with others, but to compare him with where he was a month ago or a year ago and how hes made progress himself. And I'm incredibly proud of him for that.
This is your second time now so with that there is the advantage that you are aware of the system in place and will not fall for the same traps. We've been told over and over 'early intervention is the key'. I know it's hard when the public system offers so little, but for example I follow an OT therapists page on Facebook and last week they posted that they would be starting a free online handwriting course, so ds will be starting that today.
To be honest most of my support has come from parents of other children with autism in Facebook groups. Are you part of any support groups? Is there anything your daughter needs help with that some of us might have been through before and can share what we have learned with you?

for you and your wife, it can be really tough. Try not to be afraid for the future but live more day by day. xx

Bit of reassurance for you I'm Autistic and i have been married for 13 years and have 3 kids ( 2 Autistic) we can achieve great things, please don't write them off yet.
It's hard sometimes but i wouldn't change who i am or my daughters

In a similar boat op - Check out the Nurturing Nuerodiversity YouTube channel and Facebook page. Immerse yourself in the nuerodiversity movement and allow yourself to grieve the parenthood you imagined while trying to adapt to the parenthood you're experiencing. It gets better

Hi there,
I just wanted to echo what so many others have said. I have a child who is autistic and I did grieve initially. But I’ve now got to a place where I realise he has so many unique talents and he is just him, and I don’t compare him to anybody else. I would also emphasise the importance of early intervention with speech, social skills etc. This will make a huge difference to their progress. My son is happy and that’s all that matters. X