Having a child with ASN can be frustrating without the supports needed in place.
Within school before getting a diagnosis I found it was taboo to ask for extra help for her, however the second she had a diagnosis she was gave endless possibilities of support and help.
Outwith, I struggled myself with the lack of support and help in place for myself. Being told my child has ASN and gave a piece of paper with a diagnosis and to be left without any help I had to resort to Google and online supports to ask questions and get the help I needed.
I have 3 children of different age groups, my eldest is 15 almost 16 and due to the high needs of the younger two ends up getting a little left out. Its so hard splitting yourself in 3. She has started to attend a gym with her friends and I actively encourage this as exercise is so important for them. Her dad pays for her membership but if she needs anything else it's on me including driving her to and from.
My middle son is almost 13 and is on the pathway for an adhd and Autism diagnosis. None of the schools local to me would accept him based on his needs outlined in his EHCP so he was accepted at the school local to his dad's house 23 miles away. This means my round trip is an hour and a half in good traffic to collect him from school (this isn't every day as we share care) but it's still a lot of fuel. Unfortunately his needs are such that he cannot access the community safely and has when been allowed in the past taken part in some risky behaviour well beyond his years. So, to balance our ability to keep him safe with allowing him normal peer relationships and friendships we have to organise activities for him to take part in where adults would be present. His gym he attends with school friends is 25 miles away, the rugby team he plays for and excels in has games all over the county that's up to 50 miles away and it's all time and fuel and money and a struggle to fit all 3 kids needs into life. My son often struggles in his mainstream school and I have to have countless meetings at the school which again is miles away. They have helped on occassion by making them via video call but technology fails and often I'm left in the dark and not apart of the meeting.
My youngest is 3 almost 4 and is showing signs of adhd and asd. (I have both so they are just like their momma) but this means taking him out is hard. He elopes if not watched 24/7 and has massive meltdowns which become violent. Even going to the shops is difficult.
He attends nursery 3 mornings a week and on the other days I'd absolutely love to keep him active and engaged by taking him to play centers and parks farms etc but all those come with a cost I simply cannot meet.
If I had more money I'd be able to juggle life a little easier and I'd be able to facilitate more occasions where my middle son can meet up with his friends with me close by . Just being able to take my daughter to a coffee shop for some one on one time isn't currently an option.
I wish I could do better but being neurodiverse myself with children with SEN is like juggling plates that constantly fall. Some days I feel lost in the fog of survival mode with nothing to really look forward to and not really being able to meet all the kids needs
I was working asking education system to support my son from 3 years in secondary school.
No one acted.
Now my son needs urgent support and still no luck.
I have lost my job as i need to be with my son.
Now how on low income me n my son survivor?
It's time to lose hope???
Government funds are not used in right way n right place .
No check n balance.
Seems everything will be privatised soon.
Last govt and current govt busy in building international relations not bothering about their own people.
I struggle to meet my daughter's needs mainly as I have to work so many hours to provide a decent level of living for us both.
She only has Autism and doesn't like it when things change or I can't provide what she wants instantly. She spends alot of time on her own has she is getting older now and doesn't want to be seen out with her mum as it is no longer 'cool'.
I struggle with guilt every day but not having the income would be devastating to our life circumstances so I have to choose which situation is the best solution at the time.
Hi Ruth. Id say the difficulty in meeting my son's needs are more difficult when the school holidays are upon us. April holidays are imminent and everything is so expensive and during summer when kids are off for 7 weeks it's really hard being able to afford to do the things he wants to do let alone being able to go on a holidays. Holidays, camps are very expensive too so i try to find as many things we can do for free, like the museum, workshops etc or local independent cinema where prices are really cheap in comparison to other cinemas. We just have to get creative. Thankfully we have a lovely park next to us with tennis courts so we take full advantage of that 😊
I think the big challenge I find is between his need for me and to be with me (he is two) and his needs for a roof over his head and food on the table.
I feel like I have neither enough time (because I need to work) nor enough money (because even working I have to pay for childcare and universal credit just isn't enough).
Nursery are great but he is there for ten hours a day and it makes him so tired.
And I'm forever juggling bills and things to be able to afford the basics for him, I don't get to meet his needs around activities and anything extra. I know lots of other toddlers do regular activities but I just can't afford it and then never mind anything like a holiday.
Ive got 4 children 10, 6, 2 and 6 month, so its hard to meet their needs but i try, 10yr old struggles toileting, 6 yr old struggle school, other 2 seem okay xx so can only try do what i can x
My experience with dealing with children with additional needs is very dependent on the need they have, my partners son who is 12 is happy to stay in doors play Xbox or VR and is very happy with that or using his phone if he is bored where as the elder daughter who is 16 is harder, she like to go to the fair whenever it is on and the costs can vary depending on location and deal they have, but then we have to include cost of food, transport to get her there and this can be very difficult at certain times of the month, but due to her undiagnosed ADHD she feels she should be allowed to go with her friends and this can become an issue as if we cannot afford it she will turn on the waterworks and then shut down, she goes inward and won't speak to us for hours. This has got better with medication for her anxiety which has really helped us as a family. Things can also get difficult when the children go to their dads as sometimes the daughter does not get what she wants from him and messages and calls us to try to sort it. This can be very difficult with it being her dad who has different rules to us. The added complications for us is when my own children come over and act out so they can hopefully get their own way. I try hard to be a fair parent but this can sometimes be hard when I see my children rarely.
At the moment, I am finding things difficult. I am in debt with different people. I am really struggling to get by. Citizens advice is so over used, I can’t get through to them for help.
Money is the most important thing in life but not everything. We need money to survive in this world but love, bonding as well affection will increase the sweetness of this survival. In this materialistic world we need to carefully spend money otherwise have a chance to fall in poverty.
A reduction of families’ benefits worth around £3bn will lead to child poverty rates increasing to an all-time high, a report has found.
Such “benefit cuts” will push child poverty rates from a projected 31% at the start of parliament (2024-2025) to 33% by the end (2029-2030).
It will mean a record 4.6 million children living below the poverty line in the UK in five years’ time.
https://www.bigissue.com/news/social-justice/two-child-benefit-cap-cuts-poverty-labour/
It's gotten much colder this afternoon and I'm trying my best to avoid switching the heating on earlier than the set time. All this talk abut price caps and energy price increases has me really worried again.
I'm terrified of receiving bills I can't afford to pay.
In all honesty, the anxiety around cost and feeling cold, is making me feel unwell.
I've been trying to cut back on energy usage for a while now that we're nearly through February (Obviously this is a ridiculous idea here in the UK with fluctuations in temperature and weather as drastic as they are).
What does it take to feel warm and relaxed at home without worrying about the cost of a gas bill. Every bit of my body is feeling achy tense and fatigued from trying to cope until the heating system starts up at its designated time.