Losing my FUCKIN* SHI*!!

[exhauated101]

Long story short I’ve just bought a house, I’m single and my partner has left me for another woman doesn’t see our son and hasn’t for a very long time. I got pregnant on the pill didn’t know I was pregnant (smoked cannabis and got drunk at a party about 4 days before I found out) I now have a 20 month old toddler who definitely has ASD. he walk on his tiptoes, no interest in other kids, doesn’t point, doesn’t speak, doesn’t play with toys, doesn’t interact with other people even if they try, does stuff and then forgets (could wave etc now doesn’t) (could say Mama nana now doesn’t) I have been trying do incredibly hard y make stuff easier for him, I’ve talked to my HV as well as the GP but both dismissed me saying he’s too young and most toddlers do stuff like this. The thing is I know it’s cringe but sometimes a mother just knows, I’ve always known he’s a little bit different. Anyway so basically I’ve been up at night and every break time at work researching how to help a toddler how to help with getting him to talk etc. During the day I sing to him, show him flash cards which he loves, read him books and point to stuff, try to encourage him to play I put out two to three toys and play with them so he’s not overwhelmed but he’s not interested and walks back and fourth around the room all day, I take him on walks and narrate what’s happening I point to stuff eg look a duck etc I sing nursery rhymes with him I limit screen time I get a bag with items in it and name each one I make it fun and sometimes use a silly voice or pretend I’m really excited. I take him to soft play so he can interact with other kids we go to a Toddler gym class every Monday and Thursday and he’s just not making any progress, I have some money saved up and I’m wondering is it worth it to take him to a professional speech therapist? And I doing something wrong? I’m so stressed out with the new house and I still miss my husband and my mind keeps taking me back to when things were goood and east and I don’t want to miss him but I still do and I’m starting to lose my patience with my toddler I’m Absolutely exhausted and can’t seem to catch a break. Despite all of his walking and all of our outings he decides that 9 o clock is his bedtime which isn’t great and last night he went to sleep way after 12 and woke up at 6 screaming. He makes himself vomit and I’m really just at the end of my tether last night I put him in his high chair went upstairs and just cried out of pure exhaustion and frustration. If I knew motherhood would be so hard I would of never had a baby I know it sounds absolutely horrible but I just needed to vent. Any advice would be very appreciated.

Just wanted to come on to voice support OP - it sounds tough. I remember that age (4 dc’s!) and it’s hard, especially when they’re bad sleepers and/or you feel like you’re not getting anything back. I was convinced one of mine had ASD as he was so rough and hated any kind of affection - he also used to hand-flap and it was even commented on by a nursery worker. He is now the brightest, kindest and most affectionate 11yo - all my worry was for nothing!
I do agree you sound anxious, you must try to relax a little for your own sake as well as your boy. If it turns out there is anything wrong it will be discovered in time - now is maybe too young to tell.

I think you sound like you love your son loads and are doing your absolute best for him. Stop blaming yourself - I feel you are attaching blame on yourself for the ‘way he is’ re your drinking/smoking comment - this would not have any bearing on his behaviour if it was a one time thing so try to get out of that train of thought.

Stay strong, you’re going through a hard time but it will get better.

GP and other health professionals will be very reluctant to diagnose as NHS is out of cash and doesn't want to have to spend any more money/already in the red

Bollocks. The system is stretched, yes, but if there is enough concern then a referral WILL be made. Nobody is 'reluctant' to diagnose based on the NHS bank balance.

The problem here is OPDC does not show enough to warrant a referral. Most of the behaviours they mention are common toddler behaviours. They could be ASD markers but equally they could not be.

It's nothing to do with budgets and everything to do with clinical presentation.

I don't have an autistic child, I do have a child with ADHD though so know some of the worry and exhaustion you are feeling, perhaps even a little hopelessness and grief over 'what should have been'?.

What I want to say to you is

Take a breath, accept that what will be will be, you didn't cause this (if he does have autism at all) and you can't take it away, your job is to love your little boy and not to change him xx.

Panicking and throwing everything at him all at once wont 'fix' him or stop whatever is going to happen.

Try to relax and enjoy your child's quirks when you can. Worrying about them wont change him but it will change the relationship you have with him.

Someone once said to me 'A diagnosis wont change your daughter, she will still be the same person she always has been, she will still be the person she was always going to be'. So very true and a real eye opener that no matter what my child was exactly who she was meant to be ADHD and all. The only thing that changed with a diagnosis was that I and the people around her could learn to understand her better.

Finally can you get some time to yourself? Parenting kids is hard work for many of us and taking a break to recharge can be so very helpful. You can't help him if you yourself are struggling to breathe.

What you 'did' in pregnancy will have had no effect
Your child is too young to be assessed for ASD yet.
All you can do, you ARE doing tbh.
But, yes it is hard.
I say this as a parent whose 'anxiety' was thought to be the cause of any 'issues'. This was before both my kids had a full NHS ADOS assessment and were found to be ASD (plus Dyslexia and Dyspraxia)
Be kind to yourself, and realistic with both of your needs / capablities at this stage. He is very young still, you are trying hard.
Keep up the good work, try not to worry too much, and get referrals if things dont improve in time. x

OP, you sound like just the mother your little boy needs - so dedicated and determined. Give yourself credit for that.

My DS is 5 and has an ASC diagnosis. He is thriving in a mainstream class and hitting the usual milestones. His speech has always been very advanced so different in that respect to your little boy but a few thoughts from me:

1. Lean on your HV and GP for referrals. Does he go to nursery or a playgroup yet? Our nursery kicked off the referral procedure and we've had OT and SALT input which has been helpful.

1. Someone upthread recommends ABA. I absolutely HATE the whole concept of ABA. If you were to look at what autistic adults think of it, they often say that it's not intended to help the autistic person, it's intended to make their autistic behaviours less obvious or uncomfortable for neurotypical people.

1. DS has night terrors - they usually happen if he's too warm in bed or too excited before going to bed. He often wears summer pyjamas (t-shirt and shorts style) even in winter, and I keep an empty duvet cover folded on the end of his bed so he can ditch the proper duvet and just sleep under a cover instead - that seems to help him. Fans in the summer etc. We keep him off the iPad in the hours before bed, but CBeebies bedtime stories, then teeth-brushing and a few stories in bed have always been a good way to keep to a calm routine.

1. Routine. Routine. Routine. Where you can keep things similar for him, it is likely to help him. Visual calendars are amazing - I just put a bit of string across a low window and pegged various pictures to it - a red t-shirt to show his nursery days, a picture of the local playground, photos of relatives etc, so I could tell him the night before what would happen the next day. Now he's older, I do a visual calendar for anything out of the ordinary like holidays or visitors.

1. Preparation. The more my DS knows about something, the more he can relax. So we did a trip to visit relatives in Newcastle (we live in London). I put a little booklet together with photos of the tube, King's Cross, the interior of a train, some landmarks (York station, Angel of the North, Tyne Bridge, St Mary's lighthouse) and a photo of my aunt's house. He knew exactly what to expect from the journey and managed it beautifully.

1. Beware of over-stimulation - the stuff you're doing sound great but let him have lots of downtime. Whatever his comfort thing is (DS's is arranging trains and train tracks - they're great!), let him do lots of it. It's not wasted time, it's helping him process other stuff and as he gets older will give you a bit of a breather rather than having to be the entertainment committee all the time.

1. Start to make your peace with it. The more I read and observe, the more I see ASC traits in so many successful and happy people. It is not in itself a bad thing and I truly believe that the world needs to adapt to autistic people more than we need to force autistic people to adapt to the world. I follow loads of autistic adults on Twitter and their insight is totally invaluable for me/us. If your DS does have an ASC diagnosis, in time, your role is to support him in reaching his own potential, not to cure it.

1. This book is brilliant: www.amazon.co.uk/Autism-raise-happy-autistic-child/dp/1409176282?tag=mumsnetforu03-21. I read it in one sitting. I think you might find it really helpful.

You are doing great, it's difficult. My oldest has asd. I suspect my 2 year old may have something, he only says about 10 words but unfortunately no one will do anything until his 30 month review. I asked my oldest sons speech therapist last week what she thought about my youngest and she did say that he wasnt saying as much as he should but unfortunately nothing can be done until 30 months. I'm trying to get him a nursery place, maybe you could do that? That would help bring your little one on and of there was anything else going on they can pick it up and move things along quicker.

@exhausted101 you poor thing. You must be absolutely exhausted.

Have you heard of the mchat online screening? It's a free, quick questionnaire for toddlers and is used as a tool to identify which toddlers are likely to benefit from a full screening for autism.
m-chat.org/

You could always do the questionnaire and, if he scores highly, perhaps use that to press HV and GP for a referral. While you're at the GP, also talk about your own wellbeing and anxiety and try to get support for that too.

Your little one might or might not have autism, but early awareness and intervention is a good thing so you are right to be looking into it. I know a physiotherapist who says that there are specific physical therapies that are also very helpful and important as early intervention in many cases so if you have the funds perhaps you could look into that too, if you feel that the HV and GP route isn't working.

You are doing an amazing job in such difficult circumstances. Also try to find a way to carve out time for yourself. Whereabouts in the country are you? I'm in the North East with a toddler a similar age; if you're nearby then I'd be very happy to meet up sometime.

The only thing that changed with a diagnosis was that I and the people around her could learn to understand her better.

Totally agree with this. I always knew my son was experiencing the world in a different way to the majority, the only thing a diagnosis did was give me a bit of paper to prove that to other people.

Life didn’t change much post diagnosis (my son has ASD, ADHD and Dyspraxia) in part because you aren’t automatically offered anything, so you still have to carry on largely as you were.

Your boy is still very young, but you can get ahead with researching the kinds of things that might be helpful after diagnosis.

The best thing I ever did was a short course for parents run by Occupational Therapists. Understanding how sensory stuff was contributing to my son’s behaviour meant I could make our environment better for him. I changed some of the colours in the house (there was a red rug in his room and the moment I took it out he was happier) and bought different lightbulbs, stopped taking him the the places that triggered outbursts (big Tesco!)
He wasn’t able to articulate this stuff to me at the time, but now he’s grown he can manage it better himself. In the immediate term making those changes made all our lives much more pleasant.

Little kids can have sensory weirdness even when they are neurotypical (it’s why they do stupid stuff like licking cold climbing frames!) so thinking about what might be causing your son discomfort in the home environment is worthwhile even if he doesn’t turn out to have any special education needs.

I am shocked by some of these responses, as a mum to twins who were both diagnosed with autism shortly after turning 2.

he walk on his tiptoes, no interest in other kids, doesn’t point, doesn’t speak, doesn’t play with toys, doesn’t interact with other people even if they try, does stuff and then forgets (could wave etc now doesn’t) (could say Mama nana now doesn’t)

A child not playing with toys, not pointing, not interacting and losing skills is not “typical”.

These things need to be investigated. This is not typical behaviour for the child’s age.

OP, Google portage and your area to see if you have a service and whether you can self refer. You can’t usually refer to SALT until age 2 but you could see someone privately.

I think more than looking into help at this stage you need regular breaks and to be kind to yourself. Maybe get a babysitter once a month and go out with friends or to see a film. You have done nothing wrong and sound like a wonderful parent.

The more I read and observe, the more I see ASC traits in so many successful and happy people. It is not in itself a bad thing

I suspect almost all my favourite people are on the spectrum, in real life and in the public eye!

@exhauated101
I now have a 20 month old toddler who definitely has ASD

Firstly I cannot stress enough how damaging labeling a child as having a disorder which has not been diagnosed by a medical professional can be. Please be aware that tunnel vision in cases like these can lead to misdiagnosis and incorrect treatment/therapies.

I speak as a parent who has been through the same as you and my daughter is now 4 and a half and has just been diagnosed with ASD.
We received a lot of help through Nursery Plus and Portage via the preschool DD attends (she is in her 3rd year at preschool due to being deferred because her behavioral developmental age is noted as 12-18 months) and are currently waiting to see if she has been accepted to a special needs school with limited spaces for a September 2020 start.

Your OP says your son is 20months old which means he is soon to have his 2 year health check ( NHS Baby Health Reviews ) which will focus on his development up to this point and take into account any concerns you have and the HV will refer to other agencies (SaLT etc) if necessary.
I know it's upsetting when you see other children the same age running around and communicating with others (I've had many a melt down over DD not having the ability to play with others or even use communicative language) but do not stress yourself out. Your son is young so enjoy your time with him.

You can’t usually refer to SALT until age 2

might be different for different areas as DS was reffered to SALT at about 3-4 months old (feeding issues! and they look at tongue tie as well!)

FWIW OP, My ex had a brother who who kept very much himself to himselef they didnt get a WORD let alone a sentecne untill he was 4 years old. he's never said that much anyway. He's aways been engrossed in books, computers and he's a briitant design engineer now:)

DD2's son is 2 years 5 months he has manged a word or two undergone numerous tests is seeing a sepeech therapist, loves books and is in a bit of a world of his own but seemingly very happy in himslelf!

Maybe he doesnt say much is 'cos his little sister is babbling away 24 to the dozen and he can't get a word in edgeways!

My little boy does have autism and I ruined my time in his toddler years by obsessing over whether or not he had autism.

He did all the things you describe at 20 months. Now at 6 he talks perfectly, is achieving what he should in school and interacts with his friends. We have challenges every day but he’s wonderful and so enjoyable to be around.

In my case the reality was much better than I expected. I realise autism is a spectrum and this may not be true for you but I just wanted to help calm you down. I wish I’d enjoyed my little boy for the wonderful child he was rather than worrying about how I expected him to be.

OP some great advice on this thread. I just wanted to say I have 2 DC, now older, and I've been told by health professionals that both have ASD traits - as do I - but that isn't necessarily enough for a diagnosis, and a diagnosis wouldn't necessarily benefit them. One does have DCD and dyslexia diagnoses. And all these things can come in a cluster and it can be hard to tease them out from each other.

20 months IS very young to be sure. It's not that there aren't some indicators - there are - but most signs of ASD can also indicate other things, and so much can change at this age.

I think you are doing great by your DS, but remember to relax and look after yourself as well. Some time on your own if there's any way that can be sorted - a relative, nursery etc. If you can, try to "let go" of knowing 100% what's going on, because nothing is certain. Every child needs love, affection and to be cherished for who they are – you're doing that, and that's the most important thing.

I am a Speech Pathologist. Please go and take him to see a paediatric speech pathologist with experience in this area. I also have a daughter with Autism and you are describing many red flags fir Autism. You don't typically need a referral to see a SP privately so I would do some research on thise qualified in your area and go from there. Good luck you sound like a wonderful mum :)

Could you try contacting your Children's Centre?

Not sure if they still exist but mine sometimes had a Speech & Language therapist, a sleep advisor, parenting advice or other specialities in attendance at community playgroups.

Look up ‘intensive interaction’ op. It’s an approach to help young children with social communication difficulties learn how to interact.

Hi everyone thankyou to all of your replies I’ve been pooled with so much advice! I will try to answer as many questions as I can no he doesn’t always respond to his name I’ve tried doing activities where I can help him understand for example bubbles “look (dc name) bubbles!” Etc and he has improved in that sense but he doesn’t only seem to react to me and will ignore my dad or sister.

I don’t speak to my ex but I think his older brother could of had some sort of asd, he dropped out of school at 15 but was jaw dropping smart, spoke in a unusual way, absolutely obsessed with lighters, his mum said he didn’t speak or walk or interact with anyone till 5, and couldn’t read emotions.

I do agree with everyone that I do have anxiety I’m constantly thinking about what the future has to hold I of course want what’s best for my little one, I want him to have a good school experience and lots of friends. Right now when we go to our gym class kids do come up to him but he isn’t interested. I think I will book an appointment with the gp and see what he says, I have been on anti depressant before because my anxiety can Get a bit out of hand at times, don’t know why it took for all of you to mention anxiety for me to realise why I was so stressed out

My sons had does not see him and does not want to, I don’t ask him for maintenance because he’s unemployed and has a bit of a problem with drugs I allowed him supervised contact but he wasn’t sober so asked him to leave both times, he hasn’t asked for any more and I definitely wouldn’t allow him to come see my son in a state.

Regarding nursery I was thinking of starting him after he turns two. Even though he does cry his little heart out even if I go to the kitchen or toilet. He gives me hugs and kisses out of the blue all the time which melts my heart.

I have looked at the speech therapist someone has posted on here and will be getting in touch, I will also look at the books and links.

Regarding a break, my mum does offer me one all the time but I feel like she plonks him informs of a screen and I’m just not comfortable with that especially that she lets him watch those weird videos on YouTube. I have asked her not to but I know the second I leave she will do it. My sister is great with him but has a lot of course work she needs to focus on and goes out a lot like most teenagers. I might ask my mum to have him over night once he goes to bed and have a self care night.

Thankyou all so much for the kind words x

might be different for different areas as DS was reffered to SALT at about 3-4 months old (feeding issues! and they look at tongue tie as well!)

Sorry, I meant for speech delay you usually have to wait until 2, because some kids are just late talkers. They see younger children for other reasons of course. And the cut off might vary by area.

I just remembered something I did when my youngest was not yet two. I applied to the LA for an EHCP assessment. This kicked things off, and he received a diagnosis at just over 2.
So this is the path I took: hearing test > speech therapy group sessions > 1:1 speech therapy> EHCP (education health care plan) assessment, which forced the LA to properly asses him, at the same time I pushed for a referral (via GP) to the social communication assessment team. He was then seen by various specialists, including occupational therapist, specialist speech therapist, psychologist, paediatrician, specialist paediatrician, educational psychologist. He got an EHCP, went to specialist nursery and his diagnosis was officially finalised after an ADOS.
All this sounds aLot. But I already had two with add, so by the time I recognised symptoms in my youngest, this stuff became second nature to me.
Best of luck OP
And the anxiety is a red herring, everyone who can see developmental problems I the child will be anxious

Just to say the tiptoeing could be anything .
My ds also did it at that age and was thought it was a tightening of the calf muscle and they would’ve done physio, didn’t need it in the end as he stopped doing it a couple of weeks by himself .

@squishedgrapes - I only mentioned anxiety in regards to the nighttime issues because it is a documented fact that children and babies can pick up on the main carer's emotions and it does have an effect on them. I'm not saying parental anxiety is the sole cause for every single behaviour which is causing concern to @exhauated101.

I have been there and stressed up to the eyeballs because of my 2 neurodiverse children. It has been a long time coming to get help in place for my Adhd son and his teachers are still convinced he has HFA despite performing well in assessment for the paediatrician. It has been easier for round 2!

The more pressure we place on ourselves to ensure our children conform to societies norms, the more we put pressure on our children to do what is expected of them, then get stressed because they are not 'on target'. We shouldn't change our children to fit the environment but change the environment to fit our children.

@exhauated101 - you will become your son's advocate as well as his mother. You will spend hours researching different ways to help him fit in and for others to understand him. But take care of yourself as well. You cannot pour from an empty cup is often bandied around to SEN parents and it is true. Take a step back. Work out what is important right now and enjoy your son for all his uniqueness. He has nothing to compare himself to so won't feel that he is failing. He is just enjoying himself in ways which make him happy.