How did you come to terms with additional needs

[OnTheGoAlways]

It is my birthday today and all I feel is panic and dread and I am a terrible person. There is alot going on in my life right now, including us moving home, so I am already overwhelmed.

How do other parents come to terms with being told your child has additional needs?

My son is 8, has had an inability to regulate himself for 6 years. he punched a teacher in nursery and was almost expelled, he tics, he has had a police report raised against him by another parent, he was expelled from school for 3 days, he was excluded from after school club. I have changed my job 3 times and left a masters in nursing to accommodate him. I am taking him to a private outdoor school 45 minutes out of the city once a week. He has been on CAHMS waiting list for 110 weeks, but professionals involved regularly throw the word ASD around. I thought he was initially on the waiting list for tourettes assessment. It took 2 years of my going to GP before I was listened to. My son has no self esteem or confidence, he feels he is falling apart, and I put him back together every day and I don't want to anymore.

And now, I don't want to accept that I may never get my life back, I may never not have to worry or fight for him, he may struggle to participate in education or work, he already doesn't do work most days. I have a 12yo too. I want to run away.

I'm so sorry you feel like this. I feel similar with my 9 year old. I'm hoping it gets better when they are older but I guess we just have to take one day at a time

@OnTheGoAlways - many happy returns.

It is bloody hard.

Some really random thoughts below, most of which I guess you may have already explored, but just in case:

-If your GP is rubbish, move practices. Ideally find out from other SEN parents which surgeries are OK at this stuff - realistically you'll be dealing with them on this for years to come.

-Can you talk to CAMHS/GP about expediting assessments/support? I hesitate to suggest it, but failing that, can you access any interim support for DC privately (child psychologist?)? Just a few sessions might make you feel less like you are carrying all of it, and give you some interim strategies.
-Are you getting any support, for you personally? I shell out for a couple of different sorts of professional support each month, to help maintain my mental health, and to get independent advice on navigating services, as, frankly, I need people in my corner, in order to keep going. Sounds like you are needing to give a lot of support to DC, whilst also battling to get access to things he needs like assessment. This is terribly draining.
-Are you in touch with any support groups? Talking to people in the same boat is really comforting and local knowledge exchange is so helpful in terms of local service offers/systems etc?
-Do you manage to get any breaks, where you just relax and focus on yourself? Have you got any creative outlets? Can you write down how you are feeling, just to help process it?
-Is the outdoor school in combination with mainstream school? If so, how well supported are you and DC by school? Are adjustments in place? Do you have an EHCP?
-How are things at home? Is your older child getting any support as a young carer if they are adversely impacted?
-Has your current employers been sympathetic? Are they making any adjustment for you as a carer? If they are willing to, try and make changes that reduce your overall load. Even simplifying logistics a bit can help things feel less overwhelming?
-Are you someone who finds research makes you feel a bit more in control, at least in conversations with school, LA etc?

At the point my DC received additional diagnoses, things improved, in as much as there was less pressure to make him conform to 'normal' standards and more acceptance that things would need to be a bit different. Still a battle to get what he needs, but the pressure has eased off, which makes life at home a bit easier too.

If you are dealing with things that involve developmental delay, hang onto the thought that the passage of time will bring positive change too. It's a long game, but there is plenty of potential for things to improve. It could feel radically different when he is 12 or 14. You are on the case advocating for him now and there is lots of time to get better inputs to meet his needs and support his development. If you do get additional diagnoses, you'll be able to make better adjustments, that will make life feel easier.

Sorry not to be more help, and sending you very best wishes - hope it eases a bit for you both soon.

Happy b day for yesterday!
It's really really hard.

Do you have a close friend to chat to? Is the dad helping? I've found a local group of mums that what's app (through Facebook) - I've never met them but equally it's nice to offload as going through similar stuff and bounce ideas off / give suggestions

It's not easy. I've come to the point of it is what it is. Drink too much wine, eat too much junk food. Can't see how I will ever get my own normal life back 😢

Just small stuff too - buy a really cheap bunch of roses (£3) and keep looking at them change over the days - that gives me enjoyment - now I seem weird. But anything you enjoy? Crafts? Even Netflix programs?

Are you in the UK? Applied for an EHCP? Dla?

Can your parents help out to give you a break for a hr a week?

Anyone help with the house move? - that must be stressing you out.

Take one day at a time and hope tomorrow is a better day

Sorry life seems so tough right now, sense how desperate you're feeling. The lack of ability to self regulate behaviours almost sounds like ADHD, is that an avenue you've explored? My son has just had a recent diagnosis, we had to go privately in the end as we're very let down by CAMHS. With the help of medication he is much calmer and feels more in control of his emotions, previously we were having frequent explosive outbursts although thankfully never aggressive towards others. Wishing you strength and hope that things improve.

Thank you so so much for your helpful replies, I really appreciate the time taken.

The outdoor school is a learning resource that's completely private and not associated with current school, but school allowing it as they struggle to cope with son.

I have just had another phone call to ask me to collect him now, again, this happens fairly regularly. He's hurting other children. I don't understand at all, he's so kind and considerate and thoughtful and clever and funny, why does he behave like this at school. I understand its difficult to be in a single parent household, but he sees his Dad, I don't drink or take drugs or smoke or go out, there's no evil step Dad, I work from home, I read to him at bedtime, where am I going so wrong so he's strangling other children.

Parents regularly complain, we are excluded from local community, I have had messages sent to me.

I can't do it anymore.

Ooooo that's so hard! I really feel for you.

You can do it! You need to be the warrior for your son. You need to fight for him and you will gain your inner strength.

This school does not work. You need a face to face meeting with your senco and head - in the next couple of days.

You need an EHCP.

You can do it - I know you can.

If you are in surrey - you can join my what's app. Let me know by pm if u are.

It's hard ..... x

You say the school regularly call you to collect DS. Are these formal exclusions? Or informal unlawful exclusions? If they are informal ones email the HT informing them they are unlawfully excluding DS and you will not be collecting him early unless he is formally excluded.

Does DS have an EHCP? If not you need to apply - on their website IPSEA have a model letter you can use. If he already has an EHCP you need to ask for an early review.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

If you don’t already receive DLA for DS you should apply. The Cerebra guide is useful when completing the form.

For your older DC are you in contact with your local young carers services? Sibs are good too.

Scope offer mentoring to parents of DC awaiting assessment.

Is he formally excluded every time you pick him up? If not, refuse. What support does he have at school?

Thank you again.

These are informal, because they phone me to help instead of going down a formal route. The HT actually just called me, when she phoned earlier she asked me to help and asked me to collect him, mentioned the word exclusion and said she felt he might head for another exclusion if he stayed at school. When I collected him, I asked for this to be put in writing, and so HT has phoned to say that she didn't mean that I had to collect him, that j could refuse, and she wouldn't want to jeopardise my job. I said this certainly wasn't her the earlier call came across. So it is apparently my choice, but it didn't feel like a choice to collect him.

We are in Scotland, he has an IEP, there is no learning assistant attached to him, only a small few attached to the school. He has hardly engaged with the curriculum this year at all. The school fund private play therapy which he attends once a week on site. I have also got a family counsellor recently for us, although my eldest doesn't want to engage with it.

I don't claim careers allowance, I just assume I wouldn't be eligible as its behavioural and emotional. I work 35 hours, but I feel like I am drowning, my face is constantly red and flushed, my hair is falling out, I've put on weight, I'm isolated, sad and desperate. I feel we'd all benefit from reducing my hours, but cost of living etc. I just got promoted, but god I wish I hadn't accepted it.

I need to find a support group.

You need to put a stop to the informal exclusions, they are unlawful. The school may formally exclude but if they do it isn’t the end of the world. Having them formalised forces the school to comply with the proper process, provides you with evidence of unmet needs and allows you to appeal the exclusions.

Have you spoken to Enquire? DS needs more support at school and they can help you secure the support.

You should claim Child Disability Payment. You won’t be eligible for carer’s allowance as you earn too much.

Is an IEP the Scottish equivalent of an EHCP? Don't fear formal exclusion, for my DD it got her flagged as a vulnerable pupil which opened up a lot of support ( I'm actually having the opposite issue now in that the support is working so well that she doesn't need an EHCP).

The nearest Scottish equivalent to an EHCP is a CSP, but it isn’t exactly the same.

Sending you a virtual hug.

Yeah, if you can find a support group it is a bit of a game changer to hear the rubbish being thrown at other people and develop a gallows humour about it. And hear the good stuff as women share how they have improved their situations.

Until you find your RL people we'll be here for you.