I've utterly failed my child

[Failedmychild]

What do I do next? I love her so much, she's our only child and has had a lot of health issues already with her heart and GI system. She's so loving and curious and finds the world a really difficult place to manage.

She's not meeting her developmental milestones at all across the ASQ. She was doing fine at 2, but looking at the one for 3, she's missing so many things, and it's hard to see for some if it's because she can't do them or she chooses not to do them. Eg, she has no interest in copying me or participating in test situations - if I draw a straight line, she'll draw or not draw whatever she wants to draw, if I ask her what something is, there's a reasonable chance she'll just walk away or start talking about something else. She can recite numbers 1-10 only but doesn't associate them with amounts - if asked how many of something, she says her favourite number and if corrected asks why it can't be called her favourite number. She doesn't know the alphabet - she has favourite letters but doesn't see why they can't be used for everything. She barely sleeps, is still in nappies at almost 3, and gets deeply distressed by any change from her routine or any demands on her.

She has some speech (sentences but often comes across as less than her peers as she'll only speak with a few trusted people) but it's mostly learned phrases - I'm not confident she actually understands and processes questions and formulates her own responses. Eg she can have a full 'conversation' but it's all made from scripted phrases she's learned. She won't/can't do jigsaws - she can identify where a piece goes in a simple puzzle but will insist "Mummy do it", and when that doesn't happen she just leaves the jigsaw.

It feels like she's quite globally delayed, and I don't know what to do. She has a nursery placement, she has a mum and dad who are literally running themselves into the ground to try to help her. Her meltdowns/tantrums are extreme - eg DH currently has broken ribs and I'm currently recovering from a bad back injury which gives me 7/8 out of 10 level pain 24 hours a day even with analgesia and physio (it's not always possible to keep ourselves safe because we have to keep her safe). She's extremely strong - if she doesn't want to do something, it's pretty hard to get her to do it, so there's no option of "just making her" go in the car seat, for example (plus, she has hypermobility and can unfasten buckles so she can get out of every car seat restraint we or the car seat experts in several shops and parenting classes have tried. Every resource we can access, we have. We narrate and talk constantly, we have planners and letter/number toys, loads of sensory resources, creative play resources, crafts - she does these things with us every day, covering a range of areas across the week on top of nursery. She gets outside most days for active play (only don't go out in things like named storms, otherwise we wrap up warm and go out). She loves books but just flicks through pages repeatedly so she isn't actually 'reading'; she gets really distressed if a person reading is going more slowly than she wants.

We've got extra input for her at nursery, health visitor input (paeds referral going in soon - info gathering in progress), we've done parenting courses (basically told she was too complex and there was nothing for us to change in ourselves- literally told "good luck with that!"). We have experience in education, but with mainstream/academically able children. She wouldn't get in to the local pre-schools (all have 'readiness assessments' which require continence, following instructions, etc, none of which she can do). We have no family support at all - there's just the two of us and what we can either pay for or access through healthcare. We can't leave her with babysitters as nobody can manage her - she becomes hysterical at the change of person, to the point of becoming physically sick, even fainting, and sadly the level of harm that can be caused to herself and others means people don't feel able to cope. DH and I tag-team 24 hour support other than when she's at nursery, which is when we work to keep ourselves above water. No respite care available at this stage.

Screen time is minimal (15 minutes before and after swimming class, once a week - I don't like it but I need something to keep her in one place in the changing rooms) and is 'educational' content (I know it's not great but it's the best solution I could find as she cannot sit still and wait without something, and the other options that distract for short periods are books and colouring, which don't hold up well to water!).

She doesn't get or want junk food, gets offered home-cooked meals and snacks with a range of vegetables and protein. She wants to eat a very restricted diet but is gradually eating other things.

I don't know how to help her and it breaks my heart to see her try so hard and still watch her peers race ahead of her. Looking ahead, the local mainstream schools are awful (limited SEN support, poor exam results, poor inspection findings) and we can't realistically move somewhere better because there actually isn't anywhere better where we could commute to our jobs (and changing jobs would be very hard at the moment due to how employment is in our fields). There are no commutable SEN specialist schools. The private schools all have selection processes and realistically they won't see her as a loving child who needs help, but as someone whose needs would be inconvenient/incompatible. I have no idea how to home educate a child with developmental difficulties, and taking that on would mean the end of either my career or DH's, with all the financial implications of that as well as the loss of pretty much the only thing in my life (if it were me) where I haven't resoundingly failed.

I don't know if anyone will have any advice, or whether I'm just publicly confirming that I'm a failure as a parent.

You are not a failure. I have a non verbal autistic 4 year old and believe me you re doing everything right, sometimes things just don't click until later or randomly a different way of doing something works.
You ve gotten them referrals and worked with nursery, that's not failing, more the system that fails parents.

I don't want to come across as offering more solutions that won't work but just as there's a couple of things you don't mention.
Call your children's learning disability team they often have sleep interventions that you don't need a diagnose to access (if that's a no then cerebra is a charity which has a sleep service and they also have a toy library and give general support to parents).
DLA, doesn't need a diagnosis and although it won't come close to a loss of income even with carers allowance added it would be something extra if it came to it and someone had to fit their hours.

Thanks, @1995SENNDMUM , I'll check out Cerebra - not heard of them before! I'll ask about the children's learning disability team again - I think they only see children after diagnosis up here but we're on our knees here.

@Failedmychild hi I just randomly read your post your having a right bad time I'm the same but I'm a SGP and we get him 2 days a week he's 6 non verbal and on my way to a course to learn gow to cope with his aggressive behaviour so don't think you've failed there's lots of us out there with different stories the last post should really help you Good Luck

I'm afraid I don't have any personal experience, but it sounds like you are doing everything possible to help her. I really don't think you have failed her, far from it.

Perhaps consider reposting on the special needs chat or special needs children board. There are some very knowledgeable posters there who might have some ideas.

I hope this isn’t taken the wrong way but it sounds like you are putting too much responsibility on your parenting, as though there is something you (or someone else) could have done to enable your daughter to meet those milestones. Not every child can and that’s ok.

Gross motor: She can climb (anything!), run, escape from anything, kick and throw things. She can't jump though.

Communication: She knows body parts. For the instructions, she knows what's being asked but won't do it if she doesn't want to. She'll describe a picture with nouns and adjectives but not verbs (eg different colours, even saying what emotions she thinks a character in a picture has, but she wouldn't say "walking" - when I said a character was walking, she said no and then showed me walking and said "that walking"). She knows how to move a zipper up and down but won't do it on command. Her sentences are scripted so sound good but I can tell a lot of them aren't organically generated. She doesn't know her last name, only her first, and she won't tell someone unfamiliar if they ask.

Fine motor: Looking through her drawings I can see straight lines and circles but she won't do them on command. She can do beads on string and use scissors to cut paper. Her pencil grip isn't consistent and she changes grip and hand a lot.

Problem solving: She can build things and line things up but won't do it on command. She has no interest in copying me or anyone. We've been really trying at jigsaws and I've worked out that she often knows what piece goes where but for some reason she won't pick them up - she will accurately direct other people to do it so if she has a willing assistant to touch the pieces she can do it (up to a 12 piece jigsaw with no prompts and up to 20 pieces with prompts like "what are we looking for next - a face, can you find pieces of a face?").

She can only identify I think 5 or 6 letters reliably and wants to use those or things she likes for everything. She doesn't know the cardinal rule of counting and doesn't recognise Arabic numerals above 10 (she'd say 'one two' instead of 'twelve'). She can only draw maybe 3 letters.

Is this PDA? Developmental delay? Looking at the available schools and opportunities for a child with additional needs or delays round here just paints such a bleak picture for her future.

I don’t know, it sounds like autism to me but I’m autistic so I might be projecting. I was getting mad at my dad recently, because my social / communication skills were so poor and took so long to develop. I’m still really crap at that side of things although have somehow made it into adulthood with a decent paying job, my own house, spouse etc. I was asking my dad ‘why didn’t you talk to me more as a child? Teach me how to communicate? Show more interest in me and my interests??” He said they tried but I was in my own little world, if he tried to join in when I was playing I didn’t want him to, I didn’t want to chat about what I was doing, I just wanted to do my own thing 😅 they remember me being “bossy” and directive, and I was the same at school apparently. Since then I’ve seen videos on YouTube of little autistic children, they are busy and enjoying their solo play and you wish that their parents would stop harassing them and let them do their thing. Not saying you are doing this, but maybe it’s ok that she has her favourite letters and wants to do things her own way? Maybe it’s ok to let children be somewhat?

Can you afford a private diagnosis for autism? The earlier children know, the better.

Thanks, @InWithPeaceOutWithStress , I think she probably is autistic and that's one of the assessment pathways that's about to start (they wouldn't start it until she's 3). The mainstream schools round here have terrible reputations for how neurodiverse children struggle at them.

I've responded before, but I'll say again that it absolutely does not sound like you are failing your daughter – far, far from it.

I agree that there are a number of things there that could fit with autism. I’d push back on not beginning the assessment process before 3. It absolutely can start before then. At the very least, is she on the waiting list? Sadly, she’ll likely be 3 before she reaches the top of it anyhow, but you could at least start the clock.

Some areas also run autism-specific parenting courses and/or have parent groups that are open to those 'on the pathway' as well as those already diagnosed, so that might be worth asking about. I think if you search your area and 'local offer', they're supposed to have it all nicely on a webpage, but still probably worth asking the HV, nursery, etc.

She also sounds like a gestalt language processor, quite common with autism. So most children learn single words first, then put them together, but gestalt language processors do it the other way round, learning the meaning of 'chunks' of language first, and then gradually understanding the meaning of smaller parts of the chunks (sometimes single words, sometimes shorter phrases). I think there are specific ways to support that 'top down' direction of language development, so that might also be worth researching if it sounds like it might fit.

I also think that some of the things you're concerned about, particularly around letters and numbers, she isn't actually delayed at all. Just reciting numbers and not counting properly is not behind at 3. Nor is not knowing the alphabet or using letters properly (and certainly not writing letters!). Those are all things that will be taught in the first year at school, and they first appear on the ASQs for 4-5 years. Even then, it’s counting properly to 5, recognising the letters in her name – not the whole alphabet. Of course keep encouraging them as and when, but you've got a whole year or two before those need to go on the 'delayed' list!

Thanks @skkyelark that's reassuring. Health services here were adamant they wouldn't start any referrals before 3, so her next health visitor appointment (to put the referral in and do the ASQ) will be as soon as possible after her 3rd birthday, which is the earliest services are willing to accept the referral for triage.

It feels like she's fallen behind her classmates and on the assessments, although I think quite a few of her classmates have tutors and extra lessons so maybe in some respects it's them going ahead academically rather than her having developmental delays in all those areas... I don't think she'd cope with tutors yet though...

I'll look into top down language teaching in English and autism specific parenting courses, thanks!

She sounds similar to my eldest daughter who is autistic. Honestly don't worry about the letters and numbers etc just now. My NT daughter didn't get the hang of it til she was 4 then it clicked really quickly.

I'm going against all the recommended advice here but it might be worth giving her a bit more good quality screen time. That's absolutely how mine learned best at that age, she was a gestalt language processor too. She loved alphablocks, number blocks and the twirlywoos and they really helped her understanding. It seemed to make more sense to her when it was on a screen somehow? I'm not saying leave her Infront of the telly for hours but a wee bit every day could be helpful.

Are you around a lot of children who are being prepared for private school entrance tests by any chance? That would explain why she seems 'behind' academically. Tutors and extra academic lessons for toddlers really are not the norm, nor is a nursery focusing on letters and numbers so much in the two year old room.

You are not a failure as a parent. What you're going through is incredibly tough, and you've already done so much to support your daughter. It's great that you've got the paediatric referral in progress. Once you meet with the paediatrician, they might be able to offer more targeted advice and perhaps even diagnose any underlying conditions that could be contributing to her delays.

In the meantime, try to focus on the small wins. Every time she tries something new, no matter how small, celebrate it. For example, if she starts to show a bit more interest in a puzzle, even if she still wants you to do it, that's progress.

Regarding the challenges at home, could you look into local support groups for parents of children with special needs? There might be other parents who've been in similar situations and can offer practical tips on dealing with tantrums, getting her to cooperate, and so on. Also, don't be too hard on yourselves. Taking care of a child with complex needs is a 24/7 job, and it's normal to feel overwhelmed. You're both doing an amazing job under extremely difficult circumstances.

Pretty much the only academic options other than failing schools are to get into the private schools or home educate, here. Her class is doing a lot of work on letters, numbers, etc. Some of the things she seems able to do on her own terms but she won't do them on command, while her friends seem to.

But things like continence, sleep, meltdowns, the level of distress she experiences, aren't areas where she's behind because of tutors - she's really struggling with all of those too.