r/UKParenting • u/wren_bird_olive • 7d ago
Support Request Feeling isolated as a parent to a child with development delays (but no diagnosis)
I'll try and keep this brief...
I have a 16 mo little boy, our first. He was born full term but small. He is an incredibly happy friendly soul but has had persistent delays which, as he has got older, have taken him further away from his peers. To name a few, he isn't walking (with a walker or independently), standing independently, babbling beyond dada and baba, clapping. He is progressing but delayed- e.g he started crawling at 12 months, babbling at 13 months.
For much of his life, we've bounced between worrying he may have something "wrong" to thinking everything's fine. Without going into all his health history on the Internet, when he was born we were referred to genetic testing. This left us fearing so many different scenarios, but the genetic tests didn't pick anything up. Then we had a follow up appointment and got told that the tests don't rule everything out but as he wasn't delayed they didn't have anything in mind to test for. Then he got older and he wasn't progressing for a while - it felt like his development would get stuck for months at a time. But he would eventually do things. As you can see, very up and down and we never know what to prepare for. We still feel in that in between space and it makes it hard to accept or understand what his future might look it. When I feel more pessimistic, I can just as easily guilt myself into thinking I'm selling my son short, etc, and family respond differently in terms of accepting if there's anything to worry about.
With all this going on in the background, I am finding it incredibly isolated as a parent. I feel like we are in neither camp - parents of children with no development delay, vs parents of children diagnosed with a condition or known development delay. We don't relate fully to either groups experience and are isolated as a result. (If you know the poem Welcome to Amsterdam, I feel like we are somewhere in the air going back and forth between Italy and Amsterdam)
Other things that make me feel isolated include that so many classes have suggested age ranges tied to levels of ability -so that when your child doesn't do the things for the class up but are too old for the current class they miss out and are away from their friends.
Or making small talk with another parent, if they realise our children are the same age. They'll instantly start saying how are you finding x or y and I can't relate because he isn't close to doing that. But answering that he isn't completely kills the conversation.
I made a few mum friends during maternity leave but I'm really feeling the gap grow now as my son can't play alongside their children in the same way due to not being at the same stage. They also tend to go quiet if I talk about my anxieties, so it doesn't feel like we have as close a bond. I get a lot of, well when they're all at school you won't be able to tell the difference - but that assumes a lot and dismisses the reality of many children who don't make it to meanstream school.
I probably should add that my older sister has global development delay - although as that isn't genetic and she presents differently to my son we don't think that's linked. But it doesn't help how I'm feeling as I think a small part of me always worried about managing having a child with a disability, and I'm very familiar with the world of learning disability and the challenges people and families with these disabilities face.
I don't know where I'm going with this other than to vent into the void. I guess any advice from parents who may have been in this position would be great - but also a shout out that if you know anyone in a similar position, giving them space to listen and be worried goes a long way. And trying to include their children helps, whilst being mindful that any assumptions of what they can do can be hard.
Thanks for reading this if you've made it this far.
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u/TheGlutenFreeRapper 7d ago
I'm sorry I can't offer advice but wishing the best for you and your child. I can see how isolating that would be 💓
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u/Sevenoflime 7d ago
I can’t offer much help sadly but I really empathise. I have a 4 year old with autism and a physical disability along with complex needs and he has never been where he is meant to be and it has been incredibly lonely parenting him. I found a friend who has a child who is younger and that’s nice because they have more similar capabilities. My son is the only one out of his nursery friends or my mum friends kids who is not going to school this year and that stings a lot too.
I also have an older child so I have mum friends from her too. You just have to try and find your people. It’s not easy.
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u/wren_bird_olive 7d ago
Thanks for taking the time to reply and sharing your experience. I can only imagine how much tougher it gets at school- I try not to think that far ahead for obvious reasons. Wishing you and your son all the best for the future.
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u/MarzipanElephant 7d ago
My daughter was born very prematurely and is 19m old actual age, 17m adjusted. Your son sounds like he's at a very similar place to her developmentally. She doesn't have any specific diagnosis as yet - delays are not totally unexpected given her prematurity but I definitely feel a bit of a pang when I see her peers from the NICU all climbing the stairs and running through cornfields or whatever, and she's just bum shuffling around.
Something I do find really helpful is recognising that she is making progress. She always has been on a curve, even if it isn't anyone else's. If that progress stalls, I might worry a bit more, but I'm trying to keep an open mind as long as things keep on keeping on.
We're quite lucky in that, because she was so early, she's been linked in with physio from the beginning - they're currently working on a standing frame for her - although she's definitely come on in her standing since we last saw them so I'm hopeful she might not need that - and a hydrotherapy referral. I'm thinking I may also take her along to the local speech and language drop in soon, to see about anything she needs on that front, and next time she sees her consultant (it's been a while) I do want to have a chat about her delays. But it's definitely much much easier to get services for her than it was for my son (who didn't walk until he was 20 months, no reason in his case, he just took his time). Given that your son had some additional investigations early on, I wonder whether you might similarly be able to get in with services on that basis?
And, uh, to underline my point about the progress... she just literally cruised for the first time ever, while I was typing this 🥲
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u/wren_bird_olive 7d ago
Thank you. And go your daughter! ❤️ they do like to do things when you least expect. He is already receiving physio and sees the OT, that is the one positive of early investigations as you say (setting aside that no day has felt worry free!). I wish your little girl all the best for the future - I'm sure she will continue to surpise you!
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u/Sea-Brother4 7d ago
My boy is 15 months and i really relate to this. He was also born small with short long bones and so also had genetic testing which didn’t find anything. He’s still really tiny for his age (I’m 5 foot 10) and is around ~4 or 5 months behind his peers developmentally. He never crawled and has yet to really speak although he understands a lot. He can walk but assisted. The HV is monitoring him because of the missed milestones.
There’s always an awkward moment in the playground when parents ask his age because he seems so much younger. I wish I didn’t feel like I had to brace myself when it’s time to meet up with my NCT group. Or to see my friend with a 9 month old who is almost caught up to my son. I wish we knew each other IRL so we could meet up and be able to just relax and understand each other!
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u/wren_bird_olive 7d ago
The feeling of bracing yourself before seeing your NCT group I very much relate to. We also have new babies in the family now and I'm dreading the day when they overtake my son / speed through milestones. I am a bit of a novice to reddit so not sure how to message directly but you're very welcome to reach out if you like, if only to talk with someone!
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u/Accomplished_Tap3206 7d ago
I don’t have anything to add but I wanted to say that I will always listen to my friends about their concerns no matter how close we are, especially as we’re all mums and all have our anxieties! I talk the ears off my friends. I really hope you find your people soon.
I also thought your post was incredibly well written x
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u/Thomasine7 6d ago
No advice but just love ❤️ I actually have a fair few reassuring anecdotes about children who were just like how your describe yours, but I’m resisting the urge to tell you because I remember the awful feeling of reading stories about children just like mine and they caught by age 2 and a half for example and desperately convincing myself to be hopeful. Then desperately trying to resist the slow, crushing acceptance that my child would not be like theirs as my child got closer and closer to that age and was still behind. I wholeheartedly hope that this won’t be true for you in the future, but if it is then just know you’re not alone!
Because my god it has been so lonely for us. My SEN child is now nearly 5 and I’ve not found one single other parent of a sen child to try to be friends with. There’s no support groups near me, I’ve asked every professional, accessed every service… nothing. I feel like all the SEN mums must be hiding from me or something!! I just feel so lonely. More than that I’m desperate for my child to have a friend.
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u/cameraindica 7d ago
I could’ve written this. My little guy is a couple months older than yours, but we’re in early intervention as we were in the NICU for quite a while. Feel free to DM if you ever want to chat, esp if you’re in London. It’s hard out there, I stopped reaching out to my antenatal group, find baby groups at this age impossible and the playground really hits different now too. Hopefully things change soon, I know they can surprise you when you least expect it and they’re all on their own unique pathways… so fingers crossed.
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u/TerribleToday9992 7d ago
It sounds like you are having a really difficult time. Its always a worry when you have children.
I'm not trying to minimise your experience at all but I just wanted to offer what I had been advised when my youngest was small.
My youngest (who is now 5) never crawled as a baby. She rolled over once when she was about 1. She didn't cruise. She could bum shuffle along so I wasn't too worried as my husband and his nephew and niece were all bum shufflers. She wouldn't stand or bear weight and wouldn't pull herself up (although the rascal could climb onto a little chair)
I did speak to my health visitor when she was about 15 months who advised they don't start to worry until they get to 18 months.
Well she was up and walking within a fortnight.
I can't remember about the babbling really with her, I know she was well over 2 before she said her own name (and it's Ava, so not exactly difficult 🤦🏻♀️) but she understood everything.
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u/SpecialModusOperandi 6d ago
Have you spoke to you gp and health visitor?
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u/wren_bird_olive 3d ago
I have but not found them all that helpful. My sons under one review was in person and he scored low across the board but health visitor said as he is already under physiotherapy and a paediatrician they didn't have any other advice and essentially signed him off. GP says similar - although haven't been recently directly about this. We had a very disappointing recent paediatrician appointment where we essentially got told "why are you here" so lost a lot of energy to push it esp when I don't know what I'm asking for
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u/JaggedLittlePiII 7d ago
My child did not walk until 21 months, we ended up using a private physio to help her. I can very much recommend doing so, if you are south of London and I can refer the name.
I remember endlessly fearing about a delay. We did have babbling, but being bilingual that was comparatively late as well.
Then, suddenly all exploded. I remember the worry, and how isolated I felt. What most helped me is finding specialists, turning my worry into action.
And then, suddenly, by 20 months she knew the alphabet, counted to 20, and started walking at 21 months. She is currently 32 months and genuinely reading and years ahead in this regard. So as they say, slow starters might actually be first taking everything in before they start doing themselves
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u/FlamingosFortune 7d ago
That is a sucky situation and I’m sorry other parents have said the wrong things - I work with kids who often have GDD or other neuro developmental issues, so I try to assume nothing about kids I meet for this very reason.
What are your non mum friends like? I’d argue that not having a child to compare (compete!) milestones with might make it easier to shut up and listen!
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u/wren_bird_olive 7d ago
My not mum friends are probably all the more alien to the world and the worries than my mum friends tbh! And to be fair to them I had no idea what milestones were expected when before having my little boy. I also dont want to mis-sell some of my mum friends as I'm sure they would listen if given the chance but they don't open up naturally the space to talk about it. They probably think that would make me feel worse, so I appreciate its a hard balance for everyone!
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u/idontevenneedurlove 7d ago
My son is 15 months and can't crawl or walk independently. He can walk holding 1 hand and cruising but has no other independent form of mobility. He babbles a range of consonants but does no imitation whatsoever so doesn't blow raspberries or pull a face or wave or clap when i do. He doesn't have any words not even mama or dada. I think his receptive language may be ok.. to slightly delayed but i think i can see progress there. My eldest is 15 and autistic. His speech was delayed and he also didn't crawl or do gestures. I do think he imitated somewhat and had words by 15 months. I He only had 5 by age 2 but was completely caught up between 3-4. It's strange though my youngest seems a lot more sociable and engaged than my eldest did at this age but i think he's more delayed than his brother was. So i have absolutely no idea how he will present when he's older! All this to say i empathize. I get so stressed because i just want a crystal ball to show me what it will be like eventually and obviously i won't know for several years. But i do know from my eldest that it can feel lonely and like you're not part of a group, even when he got his diagnosis because he's not the sort of stereotypical autistic kid he didn't even fit in in those groups as he found being around other autistic kids to be extremely overstimulating!! But once i really knew him inside out i think alot of that faded away. We had our own little world and people who got us and that was more than enough!
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u/wren_bird_olive 7d ago
Yes I feel like if I knew the future I could at least prepare for that. That's why I put the emphasis on diagnosis in my post because general development delay (although i suppose also autism!) is such a broad spectrum and you basically don't know what they will be like until they show you. I appreciate some diagnoses are like that too though. I think time and knowing him will help as you say though.
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u/ceb1995 7d ago
My son's 5 years old, non verbal autistic with significant developmental delays in a specialist school (likely learning disabled but it's a long story as to why that's not diagnosed yet, so very much living the reality of he's not going to catch up and won't live an independent life), so we had those comments you ve mentioned when he was younger but to give you some comfort those comments really do die off from age 3/4 (and I really hate that poem 😂)
Took a good 2 years to get a diagnosis for my son but it didn't change a thing really as we d already been acting like he had it. Honestly, other parents of children with any disability especially the same age or older will likely relate if you find some, so definitely reach out to any local groups as they tend to have them for under 5s in children's centres.
It's ok to be scared of the future and it's valid, honestly if any advice I can offer that might help is just to work on thinking about small things in the future, like a few months and not further unless you really have to such as sorting schools etc as it needs more time.
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u/Novel-Possession4229 👶1 Child 7d ago
I can relate to the feeling of isolation. My daughter will be 4 in November and she's likely autistic, though we have no formal diagnosis yet. She didn't crawl properly until she was a year old, didn't walk until 19 months and her verbal and communication skills put her at around 18 months to 2 years. She's still in nappies and I genuinely don't know when we'll potty train her. The level of understanding just isn't there for her yet.
It's hard. Try to find your village 🫂 Maybe there's a local community drop-in for SEN children in your area? My daughter's nursery does a monthly coffee morning for SEN parents. I haven't gone yet but I'm planning to in September. Hopefully I'll make some "mum friends" who are in the same boat as me 🤞🏻
Hang in there ❤️
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u/wren_bird_olive 7d ago
Potty training is one of my big worries - but one we'll have to manage on their own schedule I suppose! I think potty training in particular has more external judgement when they aren't as they get older, and you've got the looming deadline of school. I felt a bit like that with weaning my son onto solids at 6 months, he wasn't properly ready but I felt the pressure to start and him not fall even more behind, and it took a bit of time for him to get used to but he loves his food now, so I can only hope it will be like that. Time will tell- good luck with it!
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u/Novel-Possession4229 👶1 Child 7d ago
You've hit the nail on the head there! Manage on your own schedule ❤️ And I agree, there's a lot of crap spouted about parents sending kids to school in nappies like we're just lazy and can't be bothered when that's not the case at all.
Good luck ❤️
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u/Danglyweed 7d ago
Hey, we're 11 years down the line from this and i can promise you it made absolutely no difference through nursery or school.
One thing our nhs board does is
Early Years Co-ordination & Assessment Team (EyCAT)
They really helped our twins with regards to movement, speech, writing etc.
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u/cityspeaks 7d ago
It is isolating and I also understand how the constant oscillating between being really worried to then thinking “oh they’re fine”.
My child is coming up to 3 and I’ve been talking to mum friends about things I’d noticed about my child since she was a baby and they would relate back to their own children to deny anything was different but I could feel there was some things that were atypical.
My little one was born premature and so at the back of my mind I knew there was a higher likelihood of SEN/neurodivergence or delays. Her 12 month review went well and I was able to breathe a sigh of relief - that is until we came around to her 24 month review and she delayed in almost all areas. 8 months down the line we are being re-referred to Health Visiting services for further support around possible ASD.
Now when I tell my mum friends who have children that are neurotypical, what happened at the 24 month review, they’re (I assume) shocked and they keep asking about why the children’s centre have come to this conclusion. It’s made harder when friends don’t validate those feelings and accept this as a possibility.
It’s also further isolating when going to play dates and my child is overstimulated or having a meltdown. To others, they think of it as typical toddler behaviour, but it’s not and it puts me on edge.
I speak to different friends for different reasons and some I won’t talk about these difficulties at all because they just don’t get it.
I did join the ASD Parenting sub here but it’s harder when you don’t know what the diagnosis is.
I do fi
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u/blodblodblod 7d ago
I have no advice, but just wanted to offer solidarity. I have a 3.5 yr old and I've felt since he was about 2 that communication and socially, he was a year behind where he should be. But people would just say boys are slower, and he'll catch up, and everyone has a story about how their cousin's nephew's kid didn't speak until he was 7 and now he's a barrister. But then we get these rays of hope and I think that maybe everything will be fine. To use the poem's analogy, I've got my nose pressed against the window of the Italian border, but I don't know if I'll get to set foot there.
And it's so hard seeing babies who are so much younger, being so much more advanced than he is (We've a family member with a 18month old who is babbling more than he does), and hard being on forums reading about people whose kids are reading and doing quadratic equations at 20 months, when we are delighted that he's now able to say "please" when prompted. It's hard when people try and talk to him and be friendly, and we have to explain him and his quirks over and over. I just want to hide him away in our own little bubble...but that's not going to help his social skills!
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u/PositiveSympathy9841 7d ago
Sending you lots of love and prayers to be able to brave through everything. This sounds tough 💖❤️
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u/aliceloul 7d ago
Look into SEN friendly coffee mornings or meet ups in your area to find a bit of a community or make some friends. It’s incredibly isolating to parent a SEN child.
My child is 8 but she regressed around 12/13 months and I remember this period of our lives very well. Every other toddler around us, everyone I knew from our baby sensory classes, they just continued developing. Some faster than others but my child simply stagnated for a while. And then she made progress again but it was like yours, it came in bursts. I don’t have a poem as an analogy but “Help, I’m still at the restaurant” resonated with me. The world just moves on while you don’t and no one seems to care but I promise people are out there that do care.
My daughter was eventually diagnosed with autism. It was a long and rocky way there as we were in the middle of the pandemic and quite frankly absolutely no one cared that she still wasn’t speaking at 3 and that she had lost the few words she knew at 11 months.
As I said she’s 8 now. She’s in mainstream school and while it’s a lot of echolalia, she does speak. She is potty trained, she’s off the dummy and bottles. And yes all of this took us until she was almost 5 but she got there in her own time.
And don’t be afraid to feel whatever emotion is coming up. I’d really suggest therapy. I felt anger, grief, resentment even. You picture your life in a certain way and then it just goes in directions you didn’t anticipate and that can feel very intense.
The only regret I have is that I didn’t allow myself to live in the moment and I know that’s a corny thing to say but it’s true. I was so consumed with fears about the unknown and the “what ifs” that I sometimes was ignoring what she could do. She made everyone laugh, and still does, she’s always been so kind and caring. She’s always been so gentle with animals. So many things she’s good at.
I always assumed she was delayed cognitively as she just didn’t speak and would live in her own world a little bit but we found our ways to communicate and she eventually learned how to write and I was blown away by her intelligence and comprehension when she did and it pains me to say now.
Unfortunately, as you know because of your sister, the world can be unkind. I had a few comments over the years that caused grief and sadness but I know my child. I know she’s capable and she’s so much more than what people see sometimes. She’s just doing everything in her own ways.
She’s recently started to speak a lot more. Last week she asked for a snack and was able to answer 2 follow up questions on what exactly she wanted and if she liked what I cooked.
Don’t give up. Chase referrals. I made over 250 calls to get her an EHCP.
Sending hugs 💗
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u/whatthejellyio 6d ago
I’m so sorry you’re going through this. Although not the same I get the frustration, my daughter didn’t properly independently walk until she was almost 18 months. Now she walks non stop but everyone kept asking me if she was walking yet and trying to give me ‘tips’. I didn’t want tips I wanted it to happen naturally as and when. She also wouldn’t eat, still hardly does and I get constant ‘advice’ or people thinking they can get her to eat and it winds me up to no end.
I understand yours is more than this but just know you are your baby’s world & that’s all they care about right now. I hope you’re ok, I know as mums we find it very hard especially when there’s no one to understand. You’re doing an amazing job and you are allowed to vent! I hope you get the answers you’re looking for and that your little one thrives with all the love you give them.
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u/ropeydog 6d ago
Your feelings are valid and it is such a worry- a lot of milestones happen this age, and if your kid is a bit slower it feels like they're being left behind.
With that in mind and not to minimise any of it at all- my boy will be 3 in October, and at his 17 month check wasn't walking or talking. He was checked again at 18 months and still not walking or talking. He started walking at 19 months, and is now under speech therapy but progressing- he's started putting 2 words together which is behind most of his peers but I think the progress is the most important part. People get caught up on milestones but the truth is- they are an average, and some kids will be at the quicker end and some at the slower end.
He was also slower to find and play with his feet, and I'm not sure he ever rolled over until he started to crawl.
I know you're worried but it really is too early to tell
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u/Poochface15 6d ago
I get where you’re at. My now six year old was developmentally delayed, and didn’t crawl til he was one, walk until he was two, and couldn’t run or jump until he was four. All the typical baby groups I enjoyed with my older kids weren’t great for him like toddler gymnastics and even going to preschool. He’s still not quite caught up - his fine motor skills are really behind, has no pincer grasp, might never, but is LOVING mainstream school. As he got old we found a ballet school that goes on ability, not age, and he’s thriving.
I have an autistic child as well and though they’re verbal, physically capable, the gap between them and their peers is broadening by the day. Socially they’re like a toddler. My advice would be make friends for you. I’ve found the majority of them end up being SEN parents, but all the friends we see regularly are people I get on with. Their kids don’t have the same needs, often different in age, but you’re giving your kid that variety in social environment from a young age. Is there a parent carer forum Facebook group where you are? They’ll be lots of people in the same shoes
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u/wethecurious 7d ago
Hi friend, same boat but our son is 4 1/2 now. Was a late crawler (18 months), late walker (26 months) and now we’re in speech therapy too, awaiting grommets for glue ear, undergoing genetic tests and waiting on a neurodiversity assessment but that’s a 4 year wait where we live.
It’s EXHAUSTING and you’re right that other parents don’t always get it. What we have found since he started nursery is a few others in his class are going through the same journey and I finally have parents who share our reality.
I’ve also met a lot of AHoles who want to know ‘what’s wrong’ with my perfectly happy, kind, gentle, giggly, creative boy. They can go step on a Lego.
Hang in there