To ask how you adjusted to life with a SN child

[Wimbledon1983]

DD was diagnosed with a chromosomal problem which causes a huge spectrum of problems from mild to severe when I was pregnant, including problems that might be unforeseen right up until school (learning disabilities) and adulthood (eg mental illness)

He’s now doing pretty well. Has a heart op soon but in the grand scheme of things isn’t too severe and has been meeting milestones.

However I am just so anxious and obsessed with his development all the time, probably because I don’t know what typical development is because I’m a ftm. I flit between thinking everything will be fine and getting upset when seeing anyone doing anything and thinking ‘he’ll never do that’. At the moment I am worried because he’s talking but not at me, and can’t sit for even a few seconds - but he’s only 5 months.

I’m struggling to really enjoy his babyhood at all, and just still wake up thinking it’s so unfair everyday. When I was pregnant thought if he was doing this well at this stage I would be feeling happy, but I’m just not - and I feel so guilty as although I try and not let it affect me I worry he can sense it.

I just want to reach some sort of acceptance. I struggle with uncertainty at the best of times. The worst and most shameful thing is I keep thinking back to when he was conceived and wish we’d just had sex another time instead. But then I think in that case he wouldn’t be him, and I get so upset.

For people have gone through similar is there anything that helped? If you have come out of the other side and accepted things when did that happen?

No mention of ‘welcome to Holland’, please...

My eldest son has Down's syndrome, I found in the first year it helped to not compare him to any other kids and their development (easier said than done I know) and to really celebrate every milestone he met! He's nearly 6 now and I still sometimes have moments where I feel sad when I see other kids his age doing the things he should be doing but I don't really dwell on it anymore!

The rest of my family and I are also very academic, sounds like a similar background. However my children are their own people, you can’t presume their path and regardless of SN you’ll need to be open to differences.

Yes we go to our local support group, it’s only online at the minute though because of covid. I do find it really helpful. The Down Syndrome community are amazing, they are so supportive and helpful in my experience. Our local group was set up by a local mum because to the support was lacking when she had her son. I follow loads of people with kids with DS on instagram as well and find that helpful.

My stress stopped when I realised that our son is not aware that his life could be any different. He's happy. He's not frustrated by an inability to learn, or talk, or skateboard, or do anything that neurotypical kids of his age do. He's happy just the way he is. I love his happiness.

My son is 17 so we are further along the road. I do remember the early years as being the most difficult and me being unable to come to terms with my sons diagnosis. I would recommend counselling- it helped me at the time. I didn't join any support groups. To be honest I just didn't want to see what the future might bring by meeting parents with older children and I didn't feel I had the capacity to help others. You have to do what is right for you. 17 years later..I still worry and the day to day can be hard but we love him very much and have a good family life. I have been lucky to keep working - my health visitor suggested I went back to work - it has helped me enormously. (I understand not everyone can do this). There is little traffic on the SN boards - think when I posted I got two replies so haven't posted since. Finally, I also cannot stand 'Welcome to Holland..'

@EggysMom that’s a great way to think of it. Thank you.

I found a support group by following links from the website of the national charity for DD's condition. It's been very useful so far. Reading about other DC who do similarly bonkers things has been a relief, I've joined a research study which has prompted me to keep a diary, I've been able to help some other people and just this week got a lead in a secondary school that might be suitable, which is something I'd been worrying about. It does depend hugely on how much traffic the group gets and whether the moderator is good.

I found it difficult to accept I had a sen child. However through counselling and by surrounding myself with other sen families, I reached some level of acceptance. I was a ftm too so didn’t know what was normal - your son might do things differently but may still do lots of normal things. For example, he might not speak but might sign to communicate (this is just an example from my experience, I don’t know what your son’s condition is). I was so focussed on the not talking that I forgot to think of all the positive things dd could do.
I would definitely recommend finding others in a similar position, and also counselling.

Our son’s condition is similar in the way that there is a huge spectrum. Our son falls on the ‘more severe’ end of the spectrum. We found that trying to create links with parents of children with the same condition was unhelpful, it is such a broad range that their needs experiences weren’t really comparable.

Instead as our son’s needs emerged we found parents and groups around those needs eg a face to face group for deaf children, a therapy group for children with physical disabilities and an online group for tube fed children.

If you compare my son to another 3 year old all you would see if how very behind and different he is to them. If you compare my Son at 3 years old to my son at 2 years old you see the huge progress he has made! In the last year he has learnt to crawl and sit up 🤩 We try really hard not to second guess what he is going to do and not to compare him to others, instead we celebrate every tiny step forward with him and enjoy the fact that he is the happiest and most loving child.

You are grieving at the moment and there isn’t really anything that anyone can say that will make it ok for you. It is absolutely fine and understandable to grieve, it doesn’t make you a bad parent and it doesn’t mean you don’t absolutely adore your child. Therapy would be a good idea to help you unpack your feelings.

[quote Wimbledon1983]@Realii I think maybe part of my problem is that I haven’t known anyone, really, with similar problems in my life. My family is also very academic - all went to oxbridge. I know that’s all complete bollocks but I think part of me is struggling to not see that as a ‘successful’ life. I was also bullied quite badly at school and am terrified that he will have a shit time socially but not the academic stuff that will pull him through. I know I’m being stupid.[/quote]
My family are all like that as well - I am finding it hard as my kids and my brother's kids all grow up and while I am proud of my nieces and their many academic achievements I do feel a bit sad for my kids. I think dd1 has some other unidentified learning difficulties as well and while my brother's kids are heading to Oxbridge I have no idea if mine are going to manage any GCSEs. And I wish my brother and his wife would be a bit more sensitive about this! It's hard if those are your family expectations, though I think the experience of having my two as grandchildren is actually helping my parents recalibrate their idea of a succesful life a bit. I don't think you are being stupid at all - it's hard. But it is very difficult to know what lies ahead, and one thing I do regret is the time I spent angsting over the future - when dd1 started primary school I worried so much about whether she'd stay in mainstream, have friends, learn to read...and she did all those things! She's fab really. So save your energy, none of us know what's in the future, and build your support networks. I found local SN drop ins/adventure playgrounds etc very useful when they were little as it enabled me to talk to other parents and be in a space where I wouldn't be judged for their behaviour.

@FancyAnOlive I think my parents too are having the same realisation. If I think about it all philosophically it does give you a different take on life and what’s important, though it doesn’t make it less hard. The people I know whose kids have sn have said that it makes you not sweat the small stuff more. Again I don’t know if that’s just wishful thinking.

It is many years since I have been on there, but there is a forum called Heartline Families which is for children with heart conditions and their families. There are families whose children have Noonans, Digeorge Syndrome, Downs Syndrome and many other conditions.

I believe there is a Facebook group now. I hope that you find lots of support both online and in real life.

I think, looking back (DD1 is now 14) I wish I had enjoyed each stage more. It's so hard at the time, but time literally flies by when you look back.

Know what you need to look out for, then try and enjoy the rest. Don't try and embrace 'Holland'. It's ok to not be ok.

Time! My son is 9 and it just takes time .

I liked the rewrite of Welcome to Holland called Welcome to Beirut

I have an 18 year old with a chromosomal disorder that sounds very like your sons. Life was pretty tricky when she was younger and she has been limited in what she is able to do. They worry does take its toll, but we’ve been very lucky that most of the issues that you described have been avoided or more manageable than expected. In fact, I’d say her siblings with no sen and lots of other physical advantages have caused us more worry.

Actually, my last post sounds too flippant. I did go through a grieving process over what could have been, and all my dd has had to go through and still has to come. But, she is far exceeding everyone’s expectations just now and has a good life regardless of its limitations.

I went through exactly what you describe twice OP, the feelings of it being so unfair, of wanting to get to a place of acceptance, but also wanting it not to have happened, both with my DD going through diagnosis for ASD and my DH's diagnosis of cancer.

Two things helped me, one was starting to go to a group at school for parents of the children with additional learning needs, I was terrified to go at first but it was amazing. The children ranged from those with mild dyslexia to profound and multiple disabilities and all the parents could share their challenges and stories, it stopped me feeling so alone.

Secondly, I got a fuckload of counselling. I accessed it through a cancer charity so if there is a relevant charity you can find, you might be able to bypass the lengthy NHS waits. Mine started immediately. I hope you can find something that helps you. You're not alone.

💐 @LemonySippet

@Standandwait

I liked the rewrite of Welcome to Holland called Welcome to Beirut

Haven't read that but I love it already (especially as my husband is Dutch so Welcome to Holland is doubly insulting)

I'm not a fan of Welcome to Holland either. Birth diagnosis of DS with our son, also our first baby. He's just over 1 now. I thought I would go a bit off the deep end with comparisons to others but I managed to snap myself out of it pretty quickly. We were lucky to find a local DS charity that helped with support and a sense of community. If you are able, can you investigate if your son's diagnosis has a typical learning profile. That could give you a bit of a headstart on creating tools to help with development.

I completely understand where you are coming from, could have written some of it myself at points along the way.

Don't really know how to help apart from sending unmumsnetty hugs.

DS is HF ASC and though not academically behind, he is very behind his peers emotionally and behaviourally and I still find myself mourning for the academic child I was hoping for. One day I realised I'd been hoping he'd be more like me (I've been an science academic my entire career), and had to give my head a serious wobble. Then discovered I was also HF ASC!

I figure that whatever he ends up doing, it'll be his way, his life and I am his parent and here to help. It means occasionally I sit and cry and wish he was neurotypical, because being neurodiverse is damn hard at times. But it is what it is, and each day as it comes.

Even if it does come with a large probability of hearing, 'Excuse me, Mrs. Moonbells...' at the school gate, and the matching sinking feeling/wondering what's he done this time...

Counselljng.
Local sen support group ...can depend . If you are posotive person you need to find positive peolle who arent afraid to laugh
He is only 5 minths one day at a time.
You might like to read expecting adam by martha beck (academic family who have a child with DS)and
Heather lanier raising a rare girl
www.nytimes.com/2020/07/07/books/review/raising-a-rare-girl-heather-lanier.html

My ds has rare syndrome also and is in his 20s lives in supported liviing needs 24 7 support .. there have been challenging times but all is good.

As eggy said your child doesnt know any different or about societal expectations. He just needs to be loved...and needs a strong advocate. Just like any child.

..and a neurotypical child may have other issues later on
There are no guarantees. It s just you know from the outset there will be extra challenges. One day one year at a time. Years aho i met a lady with profoundly disabled teenager...yet she wanted her to experience travel with her peers go to college leave home...she did. All with support. I learned a lot from that mum s attitude. The ambitions may be fulfilled differently but no need to assume anything is off the table.
Your child is young but plug in to local groups to find what is on offer locally and look at local offer on your council website. Try everything like music dance art etc groups

I like the 'Welcome to Holland' story as it resonated with me but lots of people don't. This blog has a different take on it - worth a read.

autismorsomethinglikeit.blogspot.com/2014/01/why-i-hate-welcome-to-holland.html