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Mental state when raising an autistic child

8 replies

carrotcakebae · 15/08/2023 21:20

Please no judgement . I just need support.
I have a 3.3 year old son who is possibly on the spectrum and a 7 month old daughter .
I have little family support so constantly feel drained
My son can be very lovely and a joy to be around but at the same time extremely difficult as he is speech delayed , is pre verbal . Doesn't follow much instructions and is a sensory seeker . I find myself constantly overwhelmed especially when wanting to do activities with him, taking both kids out or engaging with him. I find myself after some time getting very frustrated and have raised my voice then I feel guilty because I keep reminding myself that he isn't doing this on purpose . I guess it took me a long time to distinguish between him being " naughty" to him possibly being " autistic" . Overall I try my best to be patient but its hard . I guess I just wanted advice and coping strategies on how I could calm down when overwhelmed so I can handle it things with him in the most appropriate way. I don't want to be the mother that is constantly angry about my son challenges but want to be able to enjoy him regardless of these challenges.
Thanks for reading

OP posts:
Eaudesud · 15/08/2023 22:57

This sounds tough OP. It sounds like you've got the important stuff gripped already; understanding this is likely to reflect limitations in his developmental capacity, so he is not intentionally being naughty, and one of the few variables you have to play with are your own expectations and reactions.

Can you make life any easier for yourself by doing less on any front? Stay in more if the transitions out are hard? Order online and avoid shops etc?

Can you join a local support group with mothers facing similar challenges - this can be such a relief, plus you pick up local tips on support services etc?

Can you prioritise doing a bit of the things you both enjoy together, every single day, in order to consciously invest in your relationship?

Can you keep a little notebook observing small but lovely moments, to remember, as it is so easy to be completely overrun with the difficult stuff.

Have you got some activities in your life that you enjoy and can be absorbed by if only for short periods every day?

Can you confide in friends - so you at least feel heard?

Has DC been referred for an autism assessment?

Does he go to nursery yet - if so, are you getting any support from there? Have they suggested applying for an EHCP (if you are in England?) or does he have one already?

Not sure if you can keep records of the trickiest situations at home and what leads up to them to see if you can spot any patterns in what is happening in the environment around DC, or what sort of demands may be being made on him, that he can't cope with?

Professionals usually advise treating children as though they were considerably younger, to reflect differences in development?

Scope offer a mentoring service to parents in the year following diagnosis.

Local neurodisability services or CAMHS may have a number of practical videos for parents on their website.

Sorry - that's a bit random. Other people will have better ideas.

Good luck

OvertakenByLego · 16/08/2023 09:31

Has DS had an OT assessment? This booklet and this website are good for OT ideas. Is DS receiving SALT support? Are Portage involved (if you aren’t in an area where it is no longer provided to DC who attend nursery and DS attends)?

Do you have a double buggy for leaving the housing? Does DS have a blue badge?

I second requesting an EHCNA (or equivalent if not in England) - IPSEA has a model letter you can use. If DS attends nursery and they need more funding in the meantime they can apply for Early Years Inclusion Funding. If DS receives DLA, they can also apply for Disability Access Funding. They can ask the Area SENCO for advice too. If DS doesn’t attend nursery, look whether your area has some specialist nursery places for those needing to go through the EHCNA process. Some special schools have specialist playgroups which could be useful to attend to meet others.

Home Start may be able to support you.

Scope also offer mentoring to parents of those going through the process.

carrotcakebae · 17/08/2023 23:33

Eaudesud · 15/08/2023 22:57

This sounds tough OP. It sounds like you've got the important stuff gripped already; understanding this is likely to reflect limitations in his developmental capacity, so he is not intentionally being naughty, and one of the few variables you have to play with are your own expectations and reactions.

Can you make life any easier for yourself by doing less on any front? Stay in more if the transitions out are hard? Order online and avoid shops etc?

Can you join a local support group with mothers facing similar challenges - this can be such a relief, plus you pick up local tips on support services etc?

Can you prioritise doing a bit of the things you both enjoy together, every single day, in order to consciously invest in your relationship?

Can you keep a little notebook observing small but lovely moments, to remember, as it is so easy to be completely overrun with the difficult stuff.

Have you got some activities in your life that you enjoy and can be absorbed by if only for short periods every day?

Can you confide in friends - so you at least feel heard?

Has DC been referred for an autism assessment?

Does he go to nursery yet - if so, are you getting any support from there? Have they suggested applying for an EHCP (if you are in England?) or does he have one already?

Not sure if you can keep records of the trickiest situations at home and what leads up to them to see if you can spot any patterns in what is happening in the environment around DC, or what sort of demands may be being made on him, that he can't cope with?

Professionals usually advise treating children as though they were considerably younger, to reflect differences in development?

Scope offer a mentoring service to parents in the year following diagnosis.

Local neurodisability services or CAMHS may have a number of practical videos for parents on their website.

Sorry - that's a bit random. Other people will have better ideas.

Good luck

Thanks for you response . I like the notebook idea .
I do try and do some activities with him during the day and we might have some good moments . But other times he will randomly cry and I don't understand why . So I'll try and note what's causing it because it seems to come from nowhere.

When it comes to confirming in friends I just keep alot to myself . I don't think they can relate . They try to by sharing their negative experiences with their kids who are neurotypical but it's not the same .

He has been referred by his SALT so I'm just waiting at the moment but at this point I don't think a diagnosis will make a difference because it doesn't change my day to day struggles . Unless it comes with professional help and services I could access.

He used to go to nursery but not anymore . He will be starting a new one soon

But thank you I will have a look on their websites

OP posts:
carrotcakebae · 17/08/2023 23:44

OvertakenByLego · 16/08/2023 09:31

Has DS had an OT assessment? This booklet and this website are good for OT ideas. Is DS receiving SALT support? Are Portage involved (if you aren’t in an area where it is no longer provided to DC who attend nursery and DS attends)?

Do you have a double buggy for leaving the housing? Does DS have a blue badge?

I second requesting an EHCNA (or equivalent if not in England) - IPSEA has a model letter you can use. If DS attends nursery and they need more funding in the meantime they can apply for Early Years Inclusion Funding. If DS receives DLA, they can also apply for Disability Access Funding. They can ask the Area SENCO for advice too. If DS doesn’t attend nursery, look whether your area has some specialist nursery places for those needing to go through the EHCNA process. Some special schools have specialist playgroups which could be useful to attend to meet others.

Home Start may be able to support you.

Scope also offer mentoring to parents of those going through the process.

No he hasn't had an OT assessment. I tried to refer him to open but it got rejected. But this was before his autism referral so maybe this is why.. he is recieving SALT support ....I don't know what portage is I'll look into it .

I do have a double Buggy which can be helpful . And I don't have a blue badge . I didn't think I was entitled to one . I also didn't think I could apply for DLA as he doesn't have a diagnosis.

He's just due to start a nursery in September but I will ask them for help towards his ECHP for when he starts school next year .

I will also look at home start and scope website
Thank you

OP posts:
OvertakenByLego · 18/08/2023 10:11

You don’t need a diagnosis for DLA. It is based on needs. Apply and use the Cerebra guide to help you complete the form. Also request a blue badge. That doesn’t require a diagnosis either. Getting one isn’t guaranteed, but if DS has difficulties remaining safe in excess of what would be typical at his age, you should apply as it is possible to get one.

Try to refer to OT again or ask nursery/the HV to. Portage is a service that supports the development of pre-school DC with additional needs - that's a rather simplistic explanation, but I hope it's enough for you to get an idea of what the service is about.

carrotcakebae · 21/08/2023 23:35

OvertakenByLego · 18/08/2023 10:11

You don’t need a diagnosis for DLA. It is based on needs. Apply and use the Cerebra guide to help you complete the form. Also request a blue badge. That doesn’t require a diagnosis either. Getting one isn’t guaranteed, but if DS has difficulties remaining safe in excess of what would be typical at his age, you should apply as it is possible to get one.

Try to refer to OT again or ask nursery/the HV to. Portage is a service that supports the development of pre-school DC with additional needs - that's a rather simplistic explanation, but I hope it's enough for you to get an idea of what the service is about.

Thank you so much for the information I will look into it further
This is definitely a big struggle of mine , trying to keep him safe especially when going out .

OP posts:
Phineyj · 22/08/2023 17:53

The books 10 Days to a Less Defiant Child and The Explosive Child have lots of good strategies (whether or not you feel those adjectives apply). They were definitely my friends at that stage!

carrotcakebae · 11/09/2023 21:08

@Phineyj thank you . Will look these up

OP posts:
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