My toddler is probably SEN/Autistic and I need to get these thoughts out.

[Buttercupsandpoppys]

This is probably the wrong place to post this but my head is whirling and I just need a safe space to get these thoughts out.

I don’t want to offend/upset but I am just going to speak unfiltered/uncensored because I cant speak this freely in real life and I really need to get these thoughts out of my mind.

My gorgeous girl is 2 years old and it’s becoming more and more obvious that she’s autistic. My friend actually suggested she was when she was around 10 months old and flapping/rocking a lot but everyone reassured me that it’s normal infant behaviour they tend to grow out of.

My dd was delayed in many areas of gross motor skills, didn’t crawl until around 14 months or walk until 2 but she was okay in other areas. Shes been referred to peads and is under a consultant for the delays but I was hopeful that things would ‘get better’ and she would catch up. But as time has gone on it’s become undeniable she has autism.

She has meltdowns in public when overstimulated, stims and has little interest in other children. Watching her at playgroups and she’s on the outside on everything.

She is so loved by me, her dad and our families. I want the very best for her which is why it breaks my heart.

I have so many questions that no one can answer and only time will tell.

I know it’s not politically correct terminology but will she be high functioning or low functioning with a learning disability? How can I tell?! By when will I know?!

I work in adult services and a professional and I know what awaits her if she has learning disabilities and autism after me and her dad have gone and it’s awful. There is no protection and it doesn’t matter if she had millions in the bank for private care if there is no loving parent to manage/oversee it.

If she’s high functioning then I know she can lead an independent life and I can dedicate my life to ensuring she has the skills and coping strategies so she can go out into the world on her own feet.

I have some friends who have autism. They are professional, capable adults with partners and careers and mortgages etc. They have struggled of course but they can live independently and have a ‘normal’ life. Will this be my daughter?

Then I have my service users and my lovely younger brother whom my parents adopted who have autism and learning disabilities. They are at the whim of others. The ones without families or parents have passed are then at the mercy of the state and whatever government is in at the time. Will this be my daughter?

The not knowing is so painful. I can’t get to the stage of acceptance and planning when I have no idea what I’ll be working with or what to hope for.

Will she be in a special school thriving or in a mainstream school achieving qualifications whilst struggling socially?

Then I look around me and go to play groups and have met so many other mums with children with SEN and ND. Like literally every group at least 1 other mother has a child with ND/SEN either at the group or older and in school. So then I ask myself WTF is going on?! Why are there now so many of us?! Yes awareness is now there but c’mon! This common?! Really? At this rate then how can it be neurodivergent when a lot of the population are divergent? Then surely there’s no longer ‘nureotypical’ anymore as being divergent isn’t rare? Like wtf is going on? Why is this happening to our children? Why so many?
But that also makes me very hopeful as then the world will become more adapted for my DD and others like her and their life changes will be much improved.

There is no one on either mine or DPs side with SEN/ND. So how did it happen?
Was it the medication I was on in pregnancy? Why us? But then the spiritual/ philosophical side of me thinks maybe we were chosen to be her parents because of who we are. My parents adopted my younger brother with autism and LD when I was a teenager. So I learned so much about it and ended up in a specialist role for adults with needs. My whole profession and university education is based around that. Me and DP are a very stable and reliable couple with great team work. In a way perfect for a child with needs. Maybe this was suppose to happen as the universe knew we were somewhat equipped to deal with it?

I have no idea. We may never get answers.

It’s the ‘not knowing’ that kills me. Sometimes I think my DD will be fine and thrive. Then other times I hold her as she has a meltdown in public and I lose all hope.

I’m sorry for this rambling post probably full of typos and making little sense. I’m just thinking out loud as few so ungrounded at the moment about it all.

If your daughter is showing signs of a developmental issue this early in life then I would prepare yourself that she will probably need to be protected and supported for the rest of her life.
I say this as a mum of a child who was diagnosed with a very variable severity genetic condition at 3 months old. I wish I had known that when my son was young because it would have helped me to accept it.

However, there is still loads of hope. Even if your daughter needs support she can (will) still be an amazing and wonderful person with masses to offer to the world..she could still have a job and live independently (with support workers) and have friends and do all the things that you enjoy doing. She will have things that she is amazing at that you are proud of and she will enrich the world by being part of it.

My dd (7yo) is also neurodivergent - being assessed for ASD but that feels like a foregone conclusion at this point. I think you have to focus on the here and now rather than worry about the future- focus on getting her the support he needs now, but also enjoying the magical unique person she is now.

you mention the ‘not knowing’ and I get that, but I have another neurotypical dd and there is just as much chance of her going off the rails as her nd sister - there are no guarantees with kids.

Oh, bless you. You, like all of us, want a happy, stable, safe future for your child. What a shitty country that can't do this reliably for people with learning disabilities. Not civilised.

I'm so glad you know and work with autistic adults. It's such a comfort, but I realise not much comfort now given the uncertainties you're focused on.

I didn't clock my eldest was autistic until she went to her second nursery. I'm glad. I would have worried and I wouldn't have parented her any differently. She's a teen now and beyond charming and delightful and articulate. None of that guarantees her way in the world but I also know adults with the absolute ideal education and backgrounds who totally failed at adulting. No relationship, no career, back in parental home in their late 40s.

Enjoy her as much as you can! I bet she's gorgeous.

@Geneticsbunny thank you so much for your response.

How old is your son now? How is he doing?

I know my DD will have a great life so long as me and her dad are around. I know she can go to a special school if needed and thrive, live with us if needed or go into supported housing and want for nothing.
But what I also know is that when me and her dad die she would then be essentially thrown to the wolves.
I work in adult safeguarding as my job. I investigate abuse of vulnerable adults for a living. Unfortunately ignorance is bliss but I don’t have that luxury.
I’ve seen adults with SEN who have had the best lives, traveled the world with their parents, been supported to live in their own flat with support workers etc. Then the minute their parents die they have no one checking in daily and keeping tabs on support workers to nip anything in the bud. Then quite quickly everything goes south. They may be lucky and have a sibling to stop by once a month or so but they often have their own lives/families so can’t monitor the way parents did.
Next thing you know a support workers been financially abusing them or they’ve been practically neglected with the bare minimum of support given. We investigate and and take appropriate actions but the care is never the same as when their parents were around and often the staff turnover is high as that’s the way the care industry is. Even when you get fab support staff it’s often very short lived as those staff members won’t be there forever. They are at the whim of whoever is supporting them at that time.

It’s actually horrendous and it makes me feel sick when I think about it. Even if I were a millionaire I couldn’t change that for her if she were to be severe. I’ve seen very wealthy parents leave their child 1.5million. All it meant was the service user was self funded and not funded by the state. But they couldn’t manage their own finances so the local authority got deputyship for finances and managed it for them. But still the same carers as anyone else. They were no better protected.

Sorry for the ramble it just worries me sick.

I questioned so many things when I realised my DS had speech delay as well as many other issues. He wasn’t like other children, always on the boundary of friendships and that hurt. BUT he is the is the most amazing person, he’s intelligent, funny. quirky, loving and so many more things I could mention. You’re at the beginning of a very long journey. That journey will bring you much happiness, it will bring you sadness, you’ll feel like you may break a lot of days (on the difficult days). You will fight like you never thought possible for your child. You will come across the most ignorant people and you’ll come across the most wonderful people on this journey you’re about to go on. Many people walk the path you’re now walking and there’s so much support out there, take the support, join the groups and sometimes silently scream into your pillow. Always know you’re not alone and sometimes there are no answers as to “why”. I’m sure any parent of a child who is ND like me have asked this question so many times and in the end I gave up looking for those ever elusive answers. Sometimes there is no answer although I totally get why you’re asking, I did the same. You WILL find your way like many of us have and it’s not always easy. One thing I do know is through those tough days better days do come.

@Listress @Corksoles @Labraradabrador

Thank you so much for your replies. It makes me feel so much better to just be seen and heard.

I know my posts sound so negative and I don’t meant to be.

These past few weeks we’ve had several incidents with DD and two people (strangers) have asked if she’s autistic because it’s becoming that obvious.

Sometimes I fool myself by reading threads on here of parents with ND children who say their kids were non-verbal until 5/6 and are now married with kids/degrees etc. then that gives me hope.
Then I have days like today when I’m like ‘who are you fooling? She’s probably severe and will always be dependant’ then I feel like screaming. Not because of my darling girl but because of the reality of the future.

If I knew she’d never ever have to be without me or her dad I’d be okay I think.

I do need to live in the present and not be worrying about us dying and her own her own, but it’s so hard.

Rant away, having a ND child can be bloody terrifying at times. However worrying so much about her future at such an early stage will not help, you cant know her future at 2, children change so much in the first few years!

All you can do at this stage is fight her corner and get the support in, as someone who already works in that type of area you are well placed to know what support would benefit her and how to access it. Speech therapy, if you can get her on the waiting list, was incredibly helpful for us and with the communication improvement other areas settled down.

DS2 is autistic, at 3 he was still non verbal, stimming, epic meltdowns, terrible gross motor control etc, I didn't have a clue if he'd manage school at all. At 6 he is in mainstream and is a happy chatty boy. He still has meltdowns but these are much better now as he can communicate. For me his diagnosis wasn't a shock as 3 of my nephews have autism

Your child is unique and will enrich the lives of those around them.

Slightly different but my son was diagnosed with Tourette's and I know the 'what ifs' and 'what will the future look like?' questions etc...Luckily his isn't so severe and he is a very bright boy so I am very positive. The main point I want to make though is it's fine to have all the questions and worries, it means you're doing your best and you care. I come from a family background where I know adult relatives of mine clearly have autism or are on the spectrum but were never diagnosed as children as their parents (in the 80s - not from the UK) were highly ashamed of admitting this. They would have benefited from specialist schools or teachings where they would have had a far better life. It may seem like a lot more kids have it now but I think it was always there as my example shows in the past it just wasn't diagnosed. Just keep doing what you're doing, making sure she gets the right help and support and you'll know you did the best you could. We are lucky now that people take this seriously and recognise learning difficulties.

((Op))
25 years ago I was where you are. My non verbal, flappy, lining up crayons DS2
He went to Special School, was non verbal when he started.
He made progress... then amazing progress. Verbal by 7 (though only we understood him) reading at 10. Went on to SN college , got a supoorted internship and then a supported job at the local supermarket.
He's been working there since he was 19.
Still living at home (he has learning disabilities too) and will always need support, but he has more progress than we could ever have imagined.

You just cannot tell how things will pan out, but the one thing you need to do is FIGHT. For the right school, for all the therapies, for respite. Get IN the system as early as you can and dont take no for an answer.

And don't die. Every single one of us who is parent to a child/adult with disabilities is scared for the future. I'm 56.. who knows how long I'll last?
I'm lucky in that he's the youngest of four, and his sister who lives near us, is a learning disability nurse and is willing and able to fight for him when I can't.

I've just added to my pension because mine pays out to dependents in adulthood who are disabled when i die. I live with that terror about what happens when we're gone. We all understand it. It's an unbearable thought.

Thank you all so much for your replies.

makes me feel less alone to know others can relate.

At what point did you fully accept the situation? How old were they when you realised their ‘baseline’ of abilities?

Thanks again for this x

I had to stop thinking about the future as it was too anxiety inducing. You just don't know. Unless she has severe learning difficulties alongside alot of it will depend on how she develops, environment, support and how becoming an adult affects her.

My advice would be push for early assessment/diagnosis as once in school wait times increase and not all schools are good.( they lead on referral etc unlike under five) ideally start ehcp process in nursery and see what you and professionals think re Sen or mainstream. You may not get a choice but visit some schools, talk to staff get a feel for them. The better informed you are the better prepared to advocate. In mainstream she will only get additional support if funding is allocated. Read some books, speak to adults. Start adapting your life to that of a nd child as whatever is the cause she will likely benefit from an approach suited to children with additional needs.

I don't think you ever fully accept it tbh. You come to terms with it gradually, but there are always moments that will catch you and make you want to scream at how unfair it is.
Stupid stuff for me;when his siblings got married, learned to drive, went off on trips alone or with friends. Knowing he won't do any of that despite being the most gentle kind soul,
Cutting his toe nails or shaving him and realising I'll be doing that til I die.

BUT... there really isn't a baseline. If you'd told me at 5 that my DS2 would be actually working in a supermarket, and be very much liked by the customers, who know him, know he's autistic , I'd have cried...it seemed so impossible. The fact that he can do a three minute walk from our house there, himself, he has JUST at 27 started reading books for pleasure... none of that seemed possible... ie he's still gaining skills, albeit at a much slower pace.

I've worked in Special Ed for 20 years and you can never really predict!

Would second this - early intervention and the right environment make a world of difference.

my dd was doing okay in preschool (small class, half days) - some clear signals of neurodiversity, but she was managing and developing. Reception was a disaster though - school was meant to be very good overall, but turned out not to be great for Sen. Class of 31, under-staffed in the classroom, main teacher didn’t have a great attitude towards Sen, and as we didn’t have a diagnosis or any formal recognition of dd’s needs we got nothing. I was carrying her out sobbing at the end of every day.

we ended up switching to a fee paying school that is mainstream but very very send friendly, and it has been a world of difference. The calmer environment alone makes a massive difference and they have given her extra support from a SaLT who has helped her with self-regulation strategies, social communication, etc. she loves school now, is doing well academically, and has friendships (admittedly more shallow / transactional). I still worry for her (every big transition is a minefield and puberty is notoriously hard on asd girls), but for now she is thriving. I know we are lucky to be in a position to have made that choice, but provision can vary massively across state schools and I had no idea what I was looking for when I was choosing that first primary school.

send resourcing is notoriously thin on the ground, but it can vary enormously depending on where you live. I think universally the earlier you can get the ball rolling the better

I don't think it's particularly helpful to think in terms of "high" or "low" functioning.

My "high functioning" dd, now 14, diagnosed autistic aged 5 was (and still is) a master at masking her difficulties. This meant that despite her diagnosis, she wasn't given the reasonable adjustments she needed at school as they weren't seeing that she needed adjustments.

This has led to a severe mh breakdown with involvement from many different agencies.

And another thing I've learnt is that the "journey" isn't linear. We have good times when everything going well, she is well-regulated and can cope with much more. Other times she is very disabled by her autism and related mental health difficulties.

@Buttercupsandpoppys he is 16 so we are just starting to think about adulthood! You can set things up like a trust fund and trustees who've will make sure that your son is looked after. You could even employ someone to oversee his care I assume. Probably not cheap but worth thinking about.
I have found that there are often lots of possible solutions ,none of which are perfect, but of you mash them together you can make something which works. So we have about 4 Pas on the books at all times because they tend to move on after about a year because they are mostly uni students. By having 4 we have cover and continuity.

@Buttercupsandpoppys I think you have a very good idea of baseline when they start school.

I'm sorry op. It's really hard for you. I have a daughter with high functioning autism and it took a while to work out she was different from others. She's being diagnosed at 10. Children I know that were diagnosed early are generally in specialist settings.
They thrive there and reach their potential.

Obviously we don't have a crystal ball. Would counselling be helpful for you?

Oh Love, I feel for you. I've been there. The fear for the future... the over-analysing every little thing your child does....It's a huge burden and it's exhausting.

For your own sanity, I think you need to stop looking for reasons why. Nobody knows for sure and you'll drive yourself mad looking for answers. And you need to stop looking at 20 years in the future and focus on what your DD needs now. What are the biggest challenges you are grappling with now? Is it communication? Motor skills? Meltdowns? And seek advice accordingly.

To give you a timeline for my own DS. I suspected my DS's autism at 11months. He was referred to a paediatrician at 2 and finally diagnosed just after his 3rd birthday. He's probably moderate- functioning. For now he's in mainstream but likely to move to a SEND setting for secondary.

My experience is that, whilst he tends to hit milestones later than NT kids, he generally gets there in the end. He crawled at 12 months. Walked at 16 months and was toilet trained just before his 4th birthday. He's now 10 and had an up to date SALT assessment recently and he's about 2-3 years behind his peers in spoken language and 5 years behind in receptive language. He struggles a lot with social skills, he really doesn't understand human behaviour at all. But he's learning all the time.

The positives are that despite his struggles with communication he is surprisingly extrovert and enjoys social events and the kids at school respond quite positively to him. His motor skills are improving slowly and, after much practice, he has become a strong swimmer and has recently mastered riding a bike.

He has a truly excellent sight memory and was recognising words and reading them before he started school. In fact for a long time his ability to read was more advanced than his ability to hold a conversation. We question whether he has a photographic memory because he can recall the tiniest visual detail years later. He was amazing spatial recognition and map reading skills. He never gets lost.

What I'm trying to say, is you can honestly not predict the future at this point. ASD kids can have what's referred to as a 'spiky profile' (big weaknesses in some areas and exceptional strengths in other areas.) But they can definitely surprise you. So try not to focus on the distant future and channel your energies into addressing more immediate issues. (We claimed DLA to pay for private therapies that our DS needed and it's paid dividends.)

@Buttercupsandpoppys I could have written your post apart from the delayed gross skills. My DD is 5 now and she has always had sensory issues, gets overstimulated and has absolutely massive meltdowns and has no real interest in interacting with peers at all. I think she masks a lot at nursery and has the meltdown at home. But we are really lucky and have such a lovely and supportive nursery. The good thing is she has a lovely relationship with my youngest and they play together and interact none stop. She’s starting school this year. The school has been really supportive and have engaged on how to support her but we’re in a village and I know all of the kids in her class and there are none really like her. Like you I notice she’s always on the outside. Although she seems perfectly happy like that so it’s me projecting a fear onto her. I feel like it’s so hard as it’s a wait and see thing for which way it goes. I find it incredibly lonely actually. Especially as I said in a village I feel nobody else has a clue what the worry is like. So sorry this post is probably of no help but at least others going through the same. @Labraradabrador thanks for your post that was really interesting re the school and gives me hope (plan b) should things not go as planned.

Helpful to whom? There are parents of children with autism who can’t speak, not toilet trained at 6/7, who can’t leave them on their own for a second as they’re a risk to themselves. How can you possibly compare with a child who can speak, can use the loo, can do basic things for themselves even if the MH is a huge worry? I think your comment is in bad taste given OP’s situation.

Op, I’m sorry you find yourself in this situation. It’s clear how much you love your daughter and you don’t need to reconcile that with the worry you have over her and your life. No personal experience but your worries are entirely reasonable and what 99% of people would feel in that situation. I agree that there seems to be a huge increase in children with your daughter’s profile - perhaps one day we will find out why and that information can be used to help them. I would try to find others in your position if possible.

I also think this reply is in bad taste considering my child is this close to being admitted to an inpatient psychiatric ward, potentially hundreds of miles away from home, because she's deemed too "high functioning" for her needs to have been sufficiently met.

I also can't leave my child alone as she's at serious risk of self harm/suicidal ideation.

I very rarely swear, but fuck off with your "how can your "how can you possibly compare..."

Very sad obviously but this thread isn’t about you - it’s about the OP, posting her worries to be told her phrasing ‘isn’t helpful’

She’s the one receiving support here, not anybody else.

I tried to write this exact same post the other day OP but I'm not as eloquent as you.

We had our first TAF for my daughter (18 months old) with nursery, Early Years and another worker last week. It is so disheartening to hear about all the struggles she has. It was so negative Every time we have an appointment or meeting the anxiety about her and what the future will be comes to the surface. It feels unbearable at times.

I also have noticed how many children seem to have SEN now. At one toddler group I go to, in my friendship group 4 out of 6 children are awaiting assessment for, or the parents are fighting for referrals for, autism. It's nothing like when I had my older child 8 years ago.

I'm bookmarking this to read through the replies.