Grieving the child my little boy never gets to be

[Annabellemason]

Hello this is my first post because I am completely and utterly lost in a world I never I never dreamed I’d be in. My little boy is 2.5 now he was late to walking at 15 months but from the minute he could walk he could kick a football and he was a very chatty interactive baby. At around 21/22 months my mum noticed he was ignoring her when she called his name. I never dreamed autism would come into play. Today my son had his first step on the diagnosis, he had a hearing test and he passed. I felt my heart completely sink today because it confirmed what I’ve known for nearly a year now. My little boy is undiagnosed and has a 2 year wait for his referral I feel so lost and completely beside myself as I’m grieving the little boy he never gets to be, I didn’t think I’d have to think of situations where one day I won’t be around and he’ll be lost or the thought of other children making fun of him and he doesn’t understand pains me beyond belief. I know physically he is here but I feel like he’s been taken from me and I want him back so badly I love him so much. The thought he might never ride a bike, never understand what Christmas is, he might never make friends. I mean from the bottom of my heart I feel truly broken and lost, every night I lay awake and cry and think why him? What did he do to deserve this?
I know I must sound very ignorant and naive but why do we have to fight so hard for a diagnosis when there’s hardly any help for autistic children as it is even after they’ve been diagnosed? He shows every sign of autism; little eye contact, no response to his name, no interest in playing with other children, says few and repetitive words. He is very happy (which is the main thing I know) but watching toddlers younger than him talk to their mums breaks my heart. My little boy saying ‘mummy’ is such a distant memory I can’t even remember how his voice sounded when he used to say it.

Sorry for the long post I feel very lost and alone at the moment and just looking for some reassurance. Thank you x

Morning - a huge cuddle and a cup of tea for you!!

what you feel is totally normal. We pretty much all did or do feel like that. I remember so many mornings sobbing to my mum with panic and worry. Or the times I’ve tried to do something “normal” like take her to a birthday party and it’s been a failure and I’ve had to hold back the tears from other parents. It’s shit. It’s beyond shit.

im sorry if im teaching you to suck eggs here but - I’ve never been bothered by getting the diagnosis at all because it doesn’t seem to change anything. We still aren’t diagnosed. The best advice I got here was - don’t expect the professionals to help. YOU have to be your child’s advocate and their teacher.
do the research. Buy the books. If money stretches, pay for private SALT/OT. Find the right nursery or school and get the SENCO on your side. Find your community - find the local Sen sessions for softplay or gymnastics or swimming and meet the local parents.
the hardest one is - stop expecting it to look like you thought it would. Find the joy in the new. Watching DD open up at a Sen softplay was magical.
and no one ever says this but but it makes me feel more in control - start financial planning for a worst case scenario if you aren’t here. So you’ll know he will be taken care of when he’s older.

Hi op, another huge hug and cuppa here! Honestly what you’re describing is totally valid, I’m a couple of years ahead of you in the SEN journey and I still have waves of sadness and grief.

I couldn’t agree more with what @IanCurtisdancing has said. Find a nursery with a great SENCO, advocate for your son because you know him better than anyone else, other SEN parents have been a godsend to me.

My son sounded incredibly similar to yours, pecs cards are fantastic for no/limited eye contact, we started slowly and introduced a few cards during meal times… they’ve been a lifesaver and he picked it up within a few months. This meant he could communicate with us and then slowly his language has started to develop. He can say lots of single words like counting to 20, colours, animals, his favourite food/book/toys/tv program… he’s started to but two words together now which is a huge milestone for us. Oh and his eye contact is “normal”

Another things I’d add is applying for DLA, I was really hesitant at first (I assumed it was means tested) but I wish I’d applied for it sooner, it ended up paying for private speech therapy, as there was a two year waiting list for an NHS SLT. Nursery can also claim funding for extra materials/resources for your son, and it helped financially as I can only work 20 hours a week due to my son’s reduced timetable.

Above all, remember to be gentle with yourself. It's okay to grieve the life you thought you'd have and to feel overwhelmed. Take each day as it comes, celebrating the small victories and seeking comfort in the love and bond you share with your son. You're doing an incredible job, and there's a community here ready to offer support and advice.

Thank you, crying again reading both your lovely words lol. It’s so confusing there’s no help I don’t even know where to start. Because he’s not been diagnosed I don’t even know where to get help with sen none of it makes sense to me at the moment. I don’t know anyone who’s had to go through this personally so I don’t even know how to begin. I looked for local groups on Facebook last night so hoping I’ll find something there. Am hoping to find a private speech and language therapist. So am I allowed to apply for DLA now even without a diagnosis? Because there’s no way I’d be able to afford speech and language without that. Thanks again lovely’s.

its so daunting! I wish there was a guide called “ASD for dummy parents”!!

books that I sound helpful:

Jessie Hewitson “how to raise a happy autistic child” has great tips breaking down all the different people you can interact with to get help and how to get it

your borough should have a website - mine is called “Bexley local offer” - they will list all the services and how you can access them - you can also email them asking for help and they point you in the right direction.

is DS in nursery? My nursery was SO helpful and are drafting the EHCP for us. They also access extra funding to help support DD.

Our HV referred us to speech therapy at the two year check.

this board is such a great resource too - you can always find help here if you aren’t sure :) xxxx

@Annabellemason You’re welcome, some of the best support and advice Ive received is from MN, it can be so helpful. It’s all overwhelming to start with, I felt so helpless at first, but you’ll pick it up.

Do you have a local university? Our university teaches a speech and language degree, and have a clinic for 3rd year students, who are mentored by fully qualified professionals. My son has been working with their clinic since he was 2.5, it’s £30 for a session, which is a lot cheaper than some of the other private SLTs in our area. Some charge £90 a session?!

Is he in nursery yet? Depending on the setting they can be really helpful in helping you navigate through all of this.

In terms of DLA, no you don’t need a diagnosis, you need evidence from professionals. I asked my Hv for a statement as she pushed the referral, I also sent in letters from the NHS acknowledging that he was on a hearing and SLT waiting list, his two year assessment( he scored very low on them) and a statement I had written. The form is very long, as is the waiting times but don’t let it put you off. Just make sure you send copies and recorded delivery!

He was in a nursery up until last month, he was left on his own to do his own thing while the others played in groups and done activities and my little boy was left to his own devices. He was also incredibly ill completely floored with sickness . I am now looking into more sen friendly nurseries because I know it will benefit him. I am on a waiting list for even a private SALT because there’s none in my area but apparently this lady is very well recommended and has a brilliant success rate.

That is unacceptable for the nursery to have left him to his own devices. They should have applied for additional funding from the LA/ early years so he has 1:1 support so they can mirror play/engangment /social interaction with other children. I’m so sorry that you are both going through this. You sound so proactive already, being on the waiting list. When you visit the nurseries you’ll get a feel for them!

Annabellemason there’s plenty you can do at home with books like Hanen’s More than words and An early start for your child with Autism. Also look at the intensive interaction technique.

Most people go through a grieving process, I certainly did. When we got my ds’ diagnosis I was very upset even though I was expecting it. In time you will find more acceptance

I do not want to give you false hope, but not answering to name and not playing with other children at 2.5 does not necessarily mean autism and does not need to be permanent. Things can change. Does your son point to show you things he likes or finds interesting? Have you done the M-Chat?

Hey! I remember those first months and I would never go back it was awful... everything you are feeling is completely normal and understandable.

You've had amazing advice already here to be honest! The main thing I've learnt is not to look too far ahead... just because they can't do something now doesn't mean they never will it just might be a different path xx

I think I’ve been in denial about it and I think the internet is the worse place especially for parents. My mum spoke for my uncle (there’s 10 months between them) he’s never been diagnosed as it wasn’t as well known in the 70s as it is today, He is incredibly clever and does very well for himself today. I’d love to believe he doesn’t have it. I have done the m-chat and it said my little boy scored 9 which was high risk. He does point but to show me what he wants also a lot of hand leading so I know it’s his form of communication. It’s just a whirlwind of emotions and confusion at the moment, do you know what that could mean? I have read online a lot of boys haven’t spoke till 4/5 and they don’t have autism in present day. (Sorry my response is probably all over the place).

We've been there too. My DS is 7 now. He's talking now which we're delighted with, although his speech is more at a typical 3-4 year old level rather than his age group but we feel he continues to make progress with his verbal skills. We feared he'd never develop speech so don't give up. Getting an EHCP is imperative when he starts nursery so you should begin preparations for that before he starts nursery.

Thank you so much, I said to his dad I don’t care he’s autistic I just want him to talk to me that’s all I care about even if he is behind compared to his peers as long as he’s talking that’s all that matters to me.

This is the thing, focus on his needs and development right now, so the things you/nursery can do. That's worth spending time researching any future diagnosis isn't really (although getting on a waiting list isn't a bad idea!) My ds was diagnosed as autistic at 5 and it hasn't really changed anything, it's there in case we need it.

Things that helped us were flashcards/pictures (like PECs and we eventually used PODD mats), now and next boards, lots of floor time and play leaning into his interests which were cars, numbers and letters. Also understanding that he is a gestalt language processor and fundamentally has a different way of learning. Aged 3/4 he had words but absolutely no meaningful conversation at all and couldnt express any of his needs... it's a world away from him now at 6, there are other things that affect his communication but in terms of understanding and speech he is pretty similar to his peers (mainstream school).

Some great advice on here. To reiterate what other posters say:

Definitely apply for DLA. Ours paid for 2 years of SALT and 3 years of occupational therapy.

Definitely investigate your local authorities 'Local Offer' as there may be useful support services you can access.

Also, if you have a Sure Start Centre near you, go there. The bloody Tories have decimated Sure Start services but most borough still have one or two. We found their help invaluable.

PECS and Social Stories can be really helpful in building language skills. (More so than Makaton IMO.) A lot of autistic people are very visual learners so supporting communication with images is really effective. There are some really good apps/packages you can sign up for that can help you create visual resources really quickly. We use 'widget'. There's also a really useful book called 'More than Words' about helping ND kids communicate. It's seriously expensive (£50) but you can usually get second hand copies on EBay. This was the book the Education Psychologist who assessed our son recommended. It's the best one out there.

Lean into any special interests your child has as a way of engaging them.

Finally - don't underestimate what your child might be capable of. My child was practically non-verbal until the age of 4. Now he will talk the ears off anyone who listens about his special interests. He can read. He can swim. He's learning to ride a bike. Last week he walked to the Coop by himself for the first time and to buy me some milk. We have a ton of challenges to overcome but we're working on stuff.

Try and find some parent groups. You might meet someone who you get on with and has similar challenges. This will help you get through this.

Yep all these feeling are normal. I expressed these to my HV and she called cold and said I was t meeting my daughters emotional needs and that is why she is the way she is. Just what I needed.... shes old and such an old fashioned bias on autism. Anyways. I found going to the ASN Sessions at soft play and trampoline really helped. I seen a little girl same as my daughter and I could of cried. I didn't speak to the mum as she looked tired and sad due to her daughter getting frustrated over the straw in the sippy bottle but was nice to other parents struggling as horrible as it sounds. I find taking her places with "normal' children i find myself comparing and feeling jealous and resentful that other parents have it so easy. All these feelings are normal. My daughter is non verbal autism non diagnosed yet so might be more bit the meltdowns are constant and the whinning. My god the whinning lol!