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 son is 5 and we are going through the process of getting him diagnosed with asd, spd and possible global developmental delay, weve known since he was 2 that something wasnt quite right.

I just take things a day at a time and try not to look to far forward which is really hard for me to do as im a planner. I also try to look at it as i will support and provide everything he needs to reach HIS full potential whatever that may be and not worry about what he wont do because theres no way for me or anyone else to know what he will or wont do in the future.

Some days its hard and i feel like i just dont have any fight left in me and i question why him? Why me? Its not fair! I think thats perfectly normal and every parent of a child with SN has those thoughts occasionally and thats nothing to be ashamed of.

Have you had any counselling to help you process the feelings you have?

Mine was slightly different because dd was diagnosed late (not fully until she was about 10), doesn't involve learning difficulties but physical disability, chronic pain and MH issues. She is now a young adult and knows as well as we do that those issues aren't going to go away: that is what she has to live with.

I was spared the worry that you are going through now, wondering how something will affect them.

On the other hand, I did spend a lot of her childhood noticing things she couldn't do. It was just that we didn't know why. So people just assumed it was because I was a crap parent (why are you pandering to her? why can't she walk as far as children a year younger? why won't you let her go on that slide?)

Having the diagnosis helped. Accepting that this was unfair and it was ok to feel angry helped. But also trying not to get mired down in that: to focus on what can help her in the situation she is in. Practicalities. Gets easier as they get older.

Also to try not to anticipate trouble. It never works out as you think it would anyway- the things you thought you couldn't bear turn out not to be that bad, things you hadn't thought of can be almost unbearable, no point in wasting energy in advance.

Btw isn't 5 months too early to sit up anyway? Dd didn't sit until she was 8 months and we were told that was still within the window.

Hugs to you OP. My twins are 4 now - one was very ill at birth and diagnosed with a very rare illness which was managed with medication. He seemed to be outgrowing it and all seemed great - then at 18 months they both had significant regressions. Both were diagnosed with autism, and one also has other disabilities including a visual impairment and some other medical issues. The last few years have been full of tests and now they’ve got a borderline test result for something that could be not too severe or could be life limiting. Waiting on further tests again. They are just starting at a specialist ASD school now after a lengthy battle. They are both non verbal and delayed but very bright in their own ways.

I can’t say I’m through the other side - I have good and bad days. Most of the time I accept our new normal but every now and then some things really hit me and I feel very low. The battle we’ve just had for their EHCPs has been one of the most difficult things I’ve ever been through, I would rather do the months in NICU again to be honest. But it was worth it.

I still find it very difficult to be around my mum friends with non-disabled children and their kids sometimes. I find it really hard looking at videos of them before they had their regression.

But overall I can find a lot of happiness in the progress they do make, it means such a lot, even things that other parents take for granted.

I too hate that bloody Holland thing because it’s such a false analogy in my view - it’s more like expecting to go to Italy and finding yourself on an entirely different planet.

Most people you know won’t understand. If you can find others who are in a similar boat then this helps a lot. I still see my other mum friends but I’m wary of talking too much about things as I don’t want to be that person who’s always bloody moaning.

I know this isn’t what you expected and it’s okay to grieve for the things you imagined that now won’t happen as you expected. You feel how you feel. Be kind to yourself x

I have a nearly 4 year old aughter who has been diagnosed with autism is non verbal and has significant learning disability we just dont know yet what as unable to comply with testing , i hate the holland poem , i am trying to come to terms with her diagnosis, she is developmental age of around 12/18 months. Im finding it super difficult being around other children her age as she is just so different. Im hoping it will ease over time, im also having councilling which is helping,
I think if he is doing well so far then thats good, im aware me saying that wont make a difference, but i hope u r more at peace in time

It's a gradual process and the not knowing the future was my bigger worry in a way. In my case it's autism and dd is fortunate to be of above average intelligence and able to function in the world mostly so reality as an adult isn't as bad as the prognosis offered at diagnosis (2.5 years) yet i still have to ensure she has support (exh and I try not to be away at the same time, her dsis and her dp are good)

Thank you for your responses. I’m sorry you’re going through this. @SinkGirl that sounds exhausting. I hate that getting support takes so much energy from sn families when they clearly have none to spare.

I do have on friend with a kid who coincidentally has the same condition though she is doing very well.she has a very good attitude I think - she’s always been very live in the moment, doesn’t compare herself to others too much. I feel like I have the opposite personality and am really not cut out for this (someone said to me once that you only get what you can cope with which made me very annoyed).

My friends all mean well but they also say things like ‘you don’t know how any kid will turn out!’ Which again I find very unhelpful.

And then I know another person whose child is very intellectually disabled and is about to move to an adult home, and I worry we’ll be in the same situation. So basically nothing ever makes me feel better. I don’t know, I’m rambling!

I think counselling is probably a good idea. Did you just have standard therapy or do you know of any type that’s particularly effective?

@Wimbledon1983 I have sent you a PM.

Very best wishes.

I feel like I have the opposite personality and am really not cut out for this (someone said to me once that you only get what you can cope with which made me very annoyed).

OP, I don't know if this is going to be any help or just be more annoying, but I do feel in retrospect that I have grown with the job, that the personality I may have had when I first became a parent didn't matter so much because I didn't have to do it all at once. I coped with things, 5, 10 years down the line that I certainly wouldn't have thought I could have coped with when I was a new parent.

Also, the coping, the hard bit, the disability was only part of it. There are also so many memories of just ordinary times, laughing together, sharing a family moment, to sustain me.

But I do think you need to go through a grieving process and that's ok too.

I have a 7 year old who was diagnosed with medical issues and brain abnormalities before birth and just after so he had a diagnosis before showing any symptoms. I also have dc with autism and ehlers danlos syndrome whose symptoms were there a long time before any diagnosis.

It's scary being told that your baby who you thought was fine will need multiple operations, might have learning difficulties and could develop schizophrenia. I have found special needs groups/activities have been great for meeting parents who understand. I try and ignore what other children his age are doing that he can't and celebrate his own milestones but it's hard.

can I mention welcome to holland if I say welcome to holland can fucking well fuck off...

I do believe it is helpful for some people, though you apear to not be one of them.

it is difficult to help as at 5 months there was not really any indication of the difficulties they had, so things were more of a gradual realisation. Looking back I can see the difficulties at five months but then I was blissfully unaware. too fucking knackered from the lack of sleep caused by their difficulties but not knowing that was why.

It's ok to feel how you feel. it's ok to be annoyed with the twats with platitudes. its ok to be bloody terrified about the future. do try and remember the fgood times though, try to look for them specifically, it will help you cope with the shit stuff as well. and there is often a lot of shitty stuff to deal with.

I think most people have no idea what to say. And I too deal with things very differently than other parents of children with the same issues. It’s okay - we are all different, and some of us are more cut out for this than others. I wasn’t and am not really, but I’m learning. And eventually it stops being this thing that’s crushing you all the time and you do adjust. It’s a rollercoaster.

I think finding like minded parents is important - I have some friends now who also have good and bad days and they get it. I really struggle with people who are relentlessly positive!

As for worrying about the future, that’s inevitable but I’ve found that my thinking about the future has lessened as they’ve got older. I guess I try not to think too far ahead and focus on shorter term things more. I’ve been so focussed on getting them into the right school and now that’s sorted I don’t know what to do with my thinking time!

It’s shit. It’s okay to say so and to think so. I promise it’s not always shit though. Just recently one of the boys has started bringing both cups to me when he wants a drink - I fill them both up and he takes one to his brother. Stupid things like that make me super happy, or when they occasionally acknowledge each other or one gives the other a hug. It was hardest when they regressed and then there seemed to be no progress for the longest time but now they are both making progress again so I feel more positive.

I definitely don’t take things for granted and I’m learning to be more patient. I do envy those who don’t have to worry about these things and sometimes it does feel very unfair. Not always though.

I have two daughters aged 12 and 10 - one is autistic and has ADHD and chronic tic disorder, and the other is also autistic and I think may have OCD. The point at which I realised my first child was probably autistic and was not developing like her peers was extremely painful - probably the most difficult period of her life. She was 2 and had just started playgroup. I used to take her there and then spend the mornings weeping and looking after her baby sister, then try and collect myself for the afternoons. It is not easy being her/their parent now, but I don't have that sense of pain except occasionally when something suddenly brings into sharp relief the diffference between one of them and their peers. Otherwise I have just got used to it, and they are fabulous complicated people as they are, though I do wish life was easier for them. When I look back to that period of realisation and shock, I can see how much I have changed and grown since then. I can also see how I have acquired this community of other parents and children with similar challenges, and how fantastic that group of people is. I cannot stand that bloody Welcome to Bloody Holland poem either by the way!

Sorry I meant to say 'most difficult period of MY life'

I have a DC with fairly mild issues in the sense that she manages quite well everyday (ADHD and ASD) but it can be stressful at home. DH and I went to marriage guidance last winter and all we talked about was DD! The two things that help the most are having a job I mostly find interesting and absorbing, and a Facebook group for local parents of DC with similar difficulties.

I think you need that too - something absorbing for yourself (doesn't have to be work) and peers who get it.

I’m really happy that you’ve reached that point @FancyAnOlive and that maybe for me this is the worst bit

How did you find a local group @Phineyj? There are American groups on fb for my sons syndrome but they’re not that helpful really - worst case, plus some adults with the syndrome so you can’t really have a parents general moan

Don't know what it's like now but I did find the SN forum on here helpful back in the day. Know what you mean about too much doom and gloom, not always helpful and can be actively damaging. What you need is a group where you can acknowledge that yes, we're having a shit day today, and then pick yourselves up and keep going.

My sister is LD, deaf and has social comm difficulties.
My daughter is also HI and diagnosed with asd.

I’m honestly happy and I feel my sister and daughter is happy. I think growing up I let go of the stress of being ‘normal’. It’s hard to describe or relate to before, but I’ve certainly reached a place where I am fine with a different path.

I’m not sure what to say, but I’d answer questions

One thing I find drags me down is ‘support groups’. I felt like it was bringing problems up, a grind of focusing on it and it popped my bubble (my kid is often realise was worse, once a woman expressed she didn’t have one of the lower functioning children described in the group. Mine was easily the lowest. She said hearing about them brought her down....).

We are fine in non-Sen groups, I find 90% are accepting to the point they just don’t really care either way about differences. The odd weird one we move on from. It saves all the crappy form-filling, discussion, applications and doom in the Sen groups. In Sen activities you’re handled with kid gloves, they keep distance and you’re always ‘Sen mum’. I want to be me. I want to not care if she has a behaviour sometimes that doesn’t hurt anyone else if she indulges in it without attracting a target on a piece of paper. If she’s at cubs and want to slide on her back on the floor for a bit, so what. Nobody actually cares and she is happy!

@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.

@corythatwas I did post a few times on the sn board when I was pregnant but it doesn’t get very much traffic at all these days. A real shame. I tried to set up a thread for people with kids with conditions of similar ages to ds but no one replied

My daughter has Down Syndrome with many of the related health complications and learning delays. The first year is the hardest bit. It took the whole year and at least 4 hospital stays to get all the health things managed including 2 major surgeries and it was just awful. Once we got on top of that and we could just live a little it got much easier. She is now nearly 3, just started at a mainstream nursery with her twin brother. I know it sounds a cliche that you don’t want to hear but it does get better with time and you will get to that place of acceptance. It has definitely got easier for us so far.

@dssbmum I lurk a bit on the DS positivity type groups online sometimes. I like their attitude. There’s no equivalent for my son’s syndrome. Do you get involved with that stuff? Do you find it helpful?

@DSsnmum sorry! Typo tag

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.

Get this one. Not that mine do have learning difficulties as such, but the difficulties caused by other forms of SN did affect their schooling. Think it gets easier as they get older and you see more of their personalities.

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 thought the same, but gradually came to realise that mine weren't just going to live my life again with added handicaps, they were going to lead their own lives, all differently. It gets easier.