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...

Also, be prepared for 'waves' of emotions. I find that at each life stage it hits me again, how different life is for DD1. Now, as she's getting to that age where other kids are more independent, it has hit me just how behind she is.

It all settles again, though, until the next milestone.

I have a child (mid primary school age) with high functioning ASD and dyspraxia. Life is much easier now we have those labels and can understand his behaviour and mitigate it to some extent. He has also largely grown out of his most difficult behaviour (ie getting violent towards other children at the first hint of conflict). It was hard when he was younger especially as his challenging behaviour meant we were outcasts at groups and family were judgemental and we didn't know if his challenging behaviours were our fault or not. We have our own groove now and life is pretty calm for the most part, though a bit different to the mainstream in terms of variety of activities, food and how much verbal advance preparation is required. Parenting my child with ASD is a different experience to parenting my NT child but no less enjoyable.

I guessed it was DiGeorge Syndrome from your post - my DS has this as well.

Feel free to message me if you would like. DS is 3.5 now so the baby years seem quite far away!

I had quite a bit of counselling and there will still be tough times ahead. It is particularly hard dealing with the uncertainty as it is very hard to predict the extent to which your little one will be affected at such a young age.

I am a big believer in the power of a diagnosis, though other people don't like the idea of defining a child by their label. A diagnosis can help you to access services more quickly and you should be on the radar for support from children's therapy and possibly Portage.

Be kind to yourself though. It can feel very overwhelming and all you can do is take it one day at a time.

Max Appeal has a very friendly FB group so come over and say hi some time

Mine is few weeks of 6. Our fabulously bonkers life is all I've ever known but it hits me every now and then! I think you just naturally reach a point of acceptance and then all you worry about is them being happy.

OP your post really resonates with me. DS1 also has a very rare chromosome condition, diagnosed when he was nearly a year old.

Both me and DH spent a large part of his early childhood worrying about him and his future. It was really difficult not to compare him to babies of the same age but we found this stopped happening as he got older and his personality developed. He’s now eight and exceeding all of our expectations. Some days are still really challenging but he is amazing and has turned into a brilliant little boy with an amazing personality and sense of humour.
We didn’t enjoy his babyhood and we look back at photos now and wonder why we didn’t just enjoy the time we had with him...we were all consumed with worry. I have every empathy because I’ve been there but try as much as possible to not compare and to enjoy small moments.

I agree with the above. Diagnosis is a good thing. It explains behaviour and opens doors. Portage is brilliant- the lady who came to see us was amazing and explained some of my sons behaviours were just typical of that age. Also, my son has an EHCP and 1:1 at school- keep trying for one as early as possible (DS1 got his at nursery) as it will help your child in the long run.

I know what you mean. DS has no diagnosis but is clearly different. I think he’s dyspraxic but we’re just waiting for the next round of never ending assessments. I can handle him...i pick my battles, embrace his quirks. DH can’t handle it. Constantly tells him off for things that he has no control over - jumping, he just seems constantly aggravated by him and it’s taking a massive toll on our marriage. I feel like a referee and it’s absolutely draining.

I'm many years down the line as my son is now 23, but I spent the first 18m of his life in a fog of fear and grief ..and I so wish I hadn't!
He was my 4th child and it was pretty obvious something wasn't quite right from the first week or so. On the plus side it meant we saw doctors, physios and had early intervention for him (without a diagnosis)..

He went to special school, walked, talked, learned to read. Was diagnosed with autism, learning disability, hypotonia, OCD. Is medicated for severe OCD .No he didn't get GCSEs or A levels, and he's not a doctor like his older sister, BUT in those early days when I was sobbing over my floppy unresponsive baby, I wish someone could have told me..it will be ok... however he is it will be ok.
My son has exceeded expectations.. against all odds he even has a simple supermarket job (and is great) He is happy. He won't ever marry or have kids or live independently but he has a friend we arrange him to meet up with (from school) he has obsessions and interests. He will never have to worry about adult stuff, because it's not part of his world, and sometimes just being with him in HIS world is refreshing... he is a simple pure soul.

I was EXACTLY where you are now, and it's awful... it really is. But it gets better.. gradually and gently, and you will meet a whole new bunch of friends along the way (good to seek out support groups )

I won't lie, even now there are times when my heart hurts.. when his peers learned to drive, went to Uni, find partners. But HE doesn't feel that way because his concept of the world is different.

Now my worries are for the future.. what happens when I'm too old to care for him,; I will have to start fighting for supported living at some point..but I know we will get there .

Sorry that's long, but what I'm saying is that it's ok to feel how you do.. and it will pass. And return sometimes..and pass again. And there will be unexpected joy along the way!
DS2 has made my family who they are.. the other kids are now a doctor, a childrens' hospice nurse, and a disability support worker... not a coincidence I don't think! DS2 is the hub of our family and in a good ways :)

My DD’s disability is physical. Time. Support organisation. I did find the Drs constant questions regarding how she’s developing awkward - I was a first timer mum and had no idea what was normal. I used to look at babies at baby groups to try and see. Plus DD’s was only physical yet they insisted she see a paediatrician for a few years who asked her to do things that you would expect of a far younger child, she’d look bemused. I vividly recall telling DD when she was about 3 in car outside hospital to just go a long with it it we’d have to go to more bloody appointments. Humour helps too.

@AshGirl

I guessed it was DiGeorge Syndrome from your post - my DS has this as well.

Feel free to message me if you would like. DS is 3.5 now so the baby years seem quite far away!

I had quite a bit of counselling and there will still be tough times ahead. It is particularly hard dealing with the uncertainty as it is very hard to predict the extent to which your little one will be affected at such a young age.

I am a big believer in the power of a diagnosis, though other people don't like the idea of defining a child by their label. A diagnosis can help you to access services more quickly and you should be on the radar for support from children's therapy and possibly Portage.

Be kind to yourself though. It can feel very overwhelming and all you can do is take it one day at a time.

Max Appeal has a very friendly FB group so come over and say hi some time

My dd has DiGeorge too. I know that the diagnosis and the outcome for this condition can seem frightening. Particularly the learning and mental health issues. Our geneticists was excellent and explained that the data collected so far on the more serious conditions should be treated with extreme caution.

However, dyscalculia is extremely common with this condition. My dd has this and requires more support because of this. I would recommend that you keep an eye out for this and push for a diagnosis ( however, because of the links this condition has to dyscalculia all schools, doctors etc have accepted this with official diagnosis from an education psychologist) if you need to get one for extra support. It has helped my dd immensely that she knows the struggles she has is nothing to do with her IQ but because of the dyscalculia caused by a bit of missing chromosome.

Argh, critical spelling mistake. It should read dyscalculia accepted without official diagnosis from educational psychologist.

Have you had counselling with a genetic counsellor? They can be hugely helpful for a handhold. This charity could be helpful about building a support network
www.undiagnosed.org.uk

Is SKinUK still around? When dd was little they had pan-disability meet-ups. We also got hooked up with groups via our therapists from around 6mos. I also ended up on the board of a pan-disability local not for profit that ran out of school activities etc.
The one thing I will say is that dd had an extraordinary knack of finally bloody doing something about a month after her therapy team had given up hope that she would be able to and moved onto work-arounds

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

This. But it's hard. Soooooo hard :-(

And Welcome to Holland is, in my opinion, a truly awful piece of condescending, patronising tripe to present to a parent. (Apologies to anyone who does find it helpful - I have yet to meet anyone who does.) The vast majority of people it's actually relevant to are clearly in a place where someone telling you "it'll be different but good in different ways" just is not going to cut it. It's more a case of "it's tough, it's okay to be upset, but you'll cope better than you think because you've no other option." The thing with that poem is that it's written by an author talking about her changing views of parenting a non-typical child, so it unintentionally minimises the raw feelings and pain of those just dropped in it. I think perhaps it tends to be used wrongly - given with the intention of comforting those of us who are suddenly "in Holland" whereas it's actually meant more for us to use as a way of helping those around us understand a little bit what it is like.

It's okay to grieve the baby and child and parenting life you were expecting. It's okay, it's natural, it doesn't make you a bad mum or your baby any less loved. A lovely NICU nurse told me that when I was clearly coping far too well whilst actually not coping at all inside because I was trying too hard to be strong and hold it all together for everyone else...I dissolved into tears on her, fell into tiny little pieces for 24 hours and then picked myself up and carried on. I credit that nurse with single-handedly preventing me from descending into very predictable and highly likely pnd. NICU nurses in my opinion care for the parents every bit as much as the babies! I have an awful/wonderful photo of me holding dd earlier that day ...I'm smiling, but my eyes are so empty and desolate it hurts to look at, as it brings it all back.

I prefer Welcome to Holland part 2 and find it resonates more (but dislike the last line.) community.babycentre.co.uk/post/a19464185/welcome_to_holland_part_2

Op some of the children I work with have chromosome deletions. No child I have ever worked with has ever been like another even with the same or close duplication, addition or deletion. There is a charity for families called Unique which I have pointed some people to.
www.rarechromo.org/
I hope you get the support you need, congratulations on your lovely baby boy.

@Amortentia Waves at fellow 22q mum 👋

DiGeorge can present in such a wide variety of ways. This makes the anxiety over the future worse (at least it did for me at the time) but one common theme is early intervention, particularly as it relates to speech, language and communication. Communication difficulties can make other issues worse - it's harder to access learning, friendships etc

We have had a private speech and language therapist since DS was 2.5 and she is amazing. Obviously we are very lucky to be able to afford this, but it is an option to keep in mind if you feel your little one is not getting the support they need.

My dd is 18 now, and we have been lucky to have had lots of support. She had a lot of intensive speech therapy when she was little and it made a huge difference.

When we got the initial diagnosis the geneticist gave us a huge manual that had been created by a paediatrician with children with DiGeorge. It was really useful and my dd had to some degree almost everything mentioned. With lots of extra support from a variety of specialists my dd has come a very long way.

When you get that diagnosis most of the worry is about what's to come. My dd still needs help but we are very surprised at how far she has come.

OP, I have a daughter with DS about whom I worried non-stop for the first 2.5 years of her life. She is now nine. For whats its worth, she is at the less academically able end of the spectrum but has knockout social skills and is physically very well. I didn't know that when she was little and was honestly harassed by either the contrast with other children, or people showing me videos of kids with DS who were multi-lingual, playing the violin or whatever. None of it helpful obviously as none of these were my child, who was resolutely giving nothing away.

I could not shake the anxiety for a long while, until I realised (a) she was going to live a long time and (b) I needed to stay sane through it all for my own sake and in order to support her. I was watching her play one afternoon perfectly happily and those two ideas occurred to me simultaneously, that she was fine for now, and I was utterly anxious the whole time.

It has got better in that she has grown and her capabilities are much more obvious, but every now and then I'm again gripped by the anxiety - say if I've had her annual review at school or if she regresses a little in her behaviour. It is ok to be anxious, I then remind myself. Life is uncertain and it is irrational to think everything will be perfectly ok. If I try to push the anxiety away it does not help at all.

What does help me, is that I have gone back to work and have worked pretty much full time since she was born. It reassures me to think that I can support us both as she grows and to be honest, I worry less when I'm not watching her closely the whole time.

She is a very funny child and the only kid I've ever met who is funnier is a little boy with DiGeorge (if that is what your guy has). But the last thing you need right now is probably even more for your lovely baby to aspire to. I hope you can manage the anxiety, but don't beat yourself up if you can't straight away, is what I wanted to say. And congratulations on your lovely baby.

OP I think you’re doing really well. It’s okay to feel how you feel. It’s always mixed emotions isn’t it. Happy for your lovely baby but worried and anxious about what the future may bring. Take it one day at a a time and it’s okay if you are never really at peace with it. Some days I still feel very sad and almost ripped off that I never had that happy , amazing newborn experience that others have and my son is 5 now.

Thank you so much everyone, I’ll keep these posts for a long time to come. I’m sorry I haven’t replied to each one individually, DS has had a bad night so I am a bit sleep deprived!

@AshGirl and @amortenia yes he does have Di George, very good spot! I’m glad your children are doing so well, they sound wonderful. Its so hard with this condition to get your head around what’s in the future because there’s absolutely no way to know what’s going to happen.

@landerlady80 I completely agree about nicu nurses, they were complete heroes. I was the opposite I think - continually blubbering to the extent that they brought a breastfeeding screen to shield me from the rest of the ward!

I’m glad other people hate welcome to Holland. It’s only ever been recommended to me by people with kids who don’t have health problems. I found ‘things fall apart’ much more useful - life is shit, living is about pain, you’re never going to know what will happen, that’s all ok and you can still have happy times.

@AshGirl did you get a salt with specialism in DiGeorge or is it all the same, if you don’t mind me asking?

[quote Wimbledon1983]@AshGirl did you get a salt with specialism in DiGeorge or is it all the same, if you don’t mind me asking?[/quote]
Hi @Wimbledon1983 I just looked for a SALT with a specialism working with toddlers and who would be able to support DS working with visuals to communicate. There were a couple in the area and I picked the one who had most experience.

I don't think she has worked with a child with DiGeorge before but she has lots of experience working with little ones with complex needs (she is ex-NHS, as are most private SALT). She has been incredibly supportive and her input has made a huge difference to DS. He is still non-verbal but his understanding is really good and he can use visuals to help us understand what he wants to say.

@Wimbledon1983

It is unfair. No child should have an uncertain future.

When my DC was very obviously seriously ill, but not yet diagnosed (it took 18 mth for the initial diagnosis of a very rare medical condition which can be fatal, and then a further diagnosis of autism at 8 yrs old), I was terrified about what the future would hold for my DC.

You need to allow yourself to grieve for the ''child you've lost'' i.e the image you had of your DC before you knew anything was wrong.
The grieving process takes time, but you will get through it.

Once you have been through the grieving stage, life becomes easier. I'm not saying that you won't have further challenges, but you learn to deal with them as they come up, rather that anticipating them, if that makes sense ?

Your life with your DC will not be the same as other parents will have, but it will be your normal life. You will be able to accept your experience of parenthood, will just be your normal life.

Remember, all children have an unsure future really, don't they ?

No-one can be sure that their DC will grow up, and no-one knows what the future holds for their child.

Keep being strong, ask for support when you need it, and don't compare your DC to anyone else's. Your child will be your world, and it's only with time that their future will be revealed.

( My DC is presently at university yep, the DC I thought wouldn't survive babyhood, never mind school ! )

Your DC will make their own future, so enjoy parenthood !

Thank you @AshGirl

@updownroundandround your dc sounds amazing! I think this is the problem as well at the moment - it just still doesn’t seem normal. I wake up every day and it’s still a surprise although we’ve known for 8 months now. I suppose that’s similar to grief - that moment when you wake up and you can’t remember what’s wrong. Once it becomes my normal it won’t sting quite so much.