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I feel like I've failed as a parent. I have no idea what to do any more.

10 replies

TechnicolouredTeapot · 05/11/2019 11:59

I stared to write a post about my life with DS since he was born but it ended up very long and probably too much to read so I will just say:
My DS is 3 in January, When he was about 1.5 we began to see a speech and language therapist due to his lack of speech and communication and also the incredibly difficult time we were having with his behaviour, which was present right from birth.
The speech and language therapist said she suspected autism but as he was so young it was way too early to tell but reffered us for an assessment.
The waiting list is around 18 months so DS will probably be seen this December.
In the time since he was 1.5 until now certain things have improved but others have stayed the same or gotten worse.
I struggle every single day with a whole range of behaviours that no one else I know with children have to deal with so no one can relate to me. I'm very isolated.
My DS attends a preschool who also struggle with his behaviour but refuse to entertain the idea that he may have autism and won't support him.
They imply it's my parenting. But every o the professional I have seen since the first speech and language therapist have all said they suspect autism and adhd .
But as the pre school are so I supportive and adamant that there's nothing wrong I have begun to doubt myself.
If there is nothing wrong with DS then I must be responsible for the struggles I'm having with him but I don't know what I'm doing wrong or what to change.
I feel I am a good parent and don't do anything different to others yet every step of my life with DS has been difficult.
I am now at a point where I am completely burnt out. I feel like I have nothing left in me. We just plod on through every day waiting for the assessment so we can finally get some answers.
I'm scared if DS is found to be neurotypical then I will be left with no support but I don't know how to handle this situation.
He is nearly 3 and he will only eat baby jars of food, toast and yogurt. He will only drink from a bottle. We struggle to go out to new or busy places and he seems to get overwhelmed and throws tantrums and hit himself. He is like a whirlwind at all times and never stops, it's very exhausting.
There are other things but if I go I to detail I will be here all day.
I just feel like I've gone wrong somewhere. I don't know what to do.

OP posts:
NoraThePessimist · 05/11/2019 12:16

You seem to care, and love him, but after 3 years anyone would be exhausted.

Two things strike me about your post.

1 - you focus on the why, not what. The impact of his needs will be the same no matter if he has autism, ADHD, or is NT. I understand your desire to pinpoint why.. but it's of less importance, if you step back, than figuring out solutions. If he's diagnosed with something, there may be more solutions available (specialist therapy, drugs, adaptations that can be put in place for education settings etc)... But his behaviour is his behaviour no matter what is causing it. You may feel more optimistic if you focus on what, not why. You seem very down but lots of parents struggle with issues during raising children, no one has it fully figured out. So, re frame it. Less "what is causing this" and more "ok, so he needs to get off a bottle and start on using a cup"... What do other parents of autistic kids do? They look for a sippy cup that has a different plastic (maybe the ones you've tried are too hard, or soft, or maybe he'd prefer a straw one, etc etc). Or maybe it's an association problem, the sippy cup you're using is something he's learned comes with crying and pressure.. so make it massive deal to get him to choose his own "special big boy, no one else is allowed to use it" cup... You'll know if that's a bad idea, if maybe it'll overwhelm him. If it does, put everyone in the family on the same cup.. yes, you and any partner drink for a few days from the new family cups... To reduce pressure on him.

Which brings me onto my second point.. what support do you have? You don't mention a partner, a friend, a mum's group, health visitor. Who's assisting you? Is there anyone to provide you with a sounding board before the referral comes in? Autism support groups online may also help.

NoraThePessimist · 05/11/2019 12:18

P.s. you have NOT "gone wrong", that makes it sound like your son is a write off. You're doing your best. You just have some challenges that you need to get help with, that's all!!

TechnicolouredTeapot · 05/11/2019 12:54

Thank you for your reply. I know my post was very negative, I didn't mean it to be, I'm having a very bad day today and I do love my DS, he is a lovely little boy, just very difficult.
In my post I didn't mention that I have focused on the "what" and have tried many different techniques and strategies to approaching his behaviours. Some of which have worked and improved things but many of them have not helped.
I think what I'm struggling with the most is not knowing what I should be doing as I get told by one set of people that he likely has ASD and to approach it as if he does but then when I take him to pre school they won't approach it that way as they say they don't think he has ASD and I should be approaching it a different way.
So it leaves me conflicted with what I'm doing, not knowing if I'm making the situation worse or not.
I don't have a lot of support, no other family apart from DP but the strain this 3 years has put on us has caused a lot of problems between us so DP has pretty much given up and doesn't help a lot at all. We have no family on either side.
All professionals ie: HV, paeds, salts say they've done pretty much all they can do until he gets assessed and that if I have trouble I should talk to his pre school.

OP posts:
Hecateh · 05/11/2019 13:10

Whether he gets a diagnosis or not the behaviour is clearly not down to you. You clearly love him and just want a consistent way to treat him. I'd trust professional opinion over pre school personally but that doesn't help if the preschool won't agree with that without a diagnosis.

Is he reasonably happy at preschool. If so I would try and go with their suggestions for now - just to give him some consistency. When/if you get a diagnosis then the approach will be different maybe but still needs to be consistent.

NoraThePessimist · 05/11/2019 13:12

Your DP is the one who's failing here btw. He's a parent. He doesn't get the option to opt out or step back, it's his son ffs, and if he can't help while his son is still tiny and struggling, that's just being a bad dad. It really is. Can you imagine your poor boy if you also decided to opt out?

Sorry that hits a nerve with me. Disney Dad is easy, it's NOW that your DH needs to grow up and help you & his son.

TechnicolouredTeapot · 05/11/2019 13:21

I completely agree about DP, we've had many discussions and unfortunately arguments over it but he will not help more as he has two children from a previous relationship that he sees on he weekends and works long hours during the week and says he is too exhausted to cope with it any more . He does help a bit, it's not like he does nothing, but I am the one who is left to do the brunt of it and it's left me feeling burnt out to essentially do it alone.
I just want the best for my DS so I do feel like I'm failing him when I have no idea what to do any more or how to approach the situation.
I'm hoping with a diagnosis (if there is one) then I'll perhaps have access to more support to help me in the right direction.
If there's not one then I will need to work out a consistent way to approach this.
DS first 8 months at pre school were hard as they would only have him for 2 hours at a time but for the last month he has been there for nearly a full session and is enjoying it and has made a bond with one or two children which is great progress for him.

OP posts:
AladdinMum · 05/11/2019 15:39

First of all it is nothing you have done or not done, it does sound like a difficult situation and I am absolutely outraged by the response of the nursery. They should involve their SENCO officer to observe and offer him specialist one-on-one support regardless of whether or not there is a diagnosis. It is the right thing to have him assessed and by your brief description of him I think realistically a autism diagnosis is likely. Sensitivities to foods, noise and self-harming are all (specially when they are all happening together) normally attributed to autism, however there are always exceptions. If autism is present, then by 3YR old it will be be very apparent. Autism is a social communication disorder which means that primarily his social communication will be significantly impacted. By communication I don't mean language as at this age over 70% of communication in non-verbal. Autism will very likely impair his ability to seek praise and share enjoyment with their carer, point to share interests (like a plane in the sky), social referencing (making eye contact with you when he is startled or cautious), showing or giving you items of interests that he finds on the floor (like an interesting leaf or rock that he finds in the part), etc - these types of social communicative interactions are normally expected by 18M.

TechnicolouredTeapot · 05/11/2019 17:08

DS was late with a lot of things, he has only just begun speaking within the last couple of months. Although he was late to make eye contact and point etc these are now things he has begun to do within the last half a year so he is making progress slowly. However I do believe that autism is present, if you put him in a room with other children you can see there is a big difference.
He is also very sensitive to sensory things such as brushing his teeth, changing his nappy and washing him. He would not let anyone pick him up or hug him until he was nearly two.
Sadly it is the nursery SENCO who is saying she doesn't think there is a problem. But she does contradict herself as she says there's no problem but they won't keep DS for full sessions or let him come to certain activities or excursions.
I am just finding it very difficult.

OP posts:
Arhumuk · 05/11/2019 18:50

What kind of nursery is this. I feel for you their attitude sounds appaling.

All. The best sister I hope things get better.

AladdinMum · 06/11/2019 09:53

The nursery and staff sound appalling - how can a SENCO officer say there is no problem and then exclude him from certain activities or excursions - awful. I would seriously consider moving him to somewhere else if at all possible. One thing to remember is that children with autism also learn and progress, many will eventually learn to clap, point, wave, etc. the big difference is that the time line and order of them learning these skills is very different to that of child who is developing normally.

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