To think some people just aren't cut out to parent special needs children

[Troubleinpergatory]

I feel this way at the moment.

Is it a universal thing among parents of children with significant needs / extreme challenging behaviour or do you think that some people just aren't cut out for the job?

I've never felt that I wasn't good enough for my NT children, just completely unable to meet the needs of my special needs one

Op I've just read your updates, I'd assumed he was much older.
I really hope you are able to get much needed support.
Would a trampoline help or even a big foam mat that he could bounce on.

The last two years of covid and social distancing can't have helped either.

@Troubleinpergatory and @BattenbergdowntheHatches

The short story is that we requested a referral to CAHMS when at the GP and he was assessed and diagnosed by a CAHMS psychiatrist 10 months later. That sounds like a success story, and going by what I read on here it is! We're still under CAHMS and DS takes a dose of melatonin in the evening to get to sleep (otherwise he'd be bouncing off the walls until 1am) and a slow release stimulant medicine during the day which allows him to focus better.

The longer story is that he was on a two year waiting list for ASD diagnosis via school, the GP and latterly community paeds from the age of 4. Diagnosis finally came at age 6. From the age of 4 we've been through play therapy, PALMS (like CAHMS but with assistance mainly geared at the parents of SEN kids - problem was we were already doing all this because by the time he saw them he was 7!), occupational therapy, educational psychologist, specialist teachers, a charity specialising in parent coaching and umpteen interventions and temporary exclusions at school. He sensory seeks so is incredibly impulsive and was very violent until he was given regular movement breaks at school.

It's been fucking hard.

CAHMS only cared when we were at crisis point and he was almost permanently excluded from his (very SEN focused and inclusive mainstream school). I called every two weeks from the referral date to see if there were any cancellation appointments. That was how we got in there in under a year.

The preference is to assess for ADHD later (after age 6-7) because some traits can be grown out of. The impulsivity and the lack of focus are two big things that become more and more obvious as time goes on.

Happy to answer questions - our lives feel fairly ok for the first time in almost 9 years and my marriage is no longer on the rocks. DS has friends and parents evening started with a smiling teacher this week. I cannot tell you how much difference the meds have made.

I actually got DS some boxing gloves and pads which I tried to encourage him to hit when he's anxious or frustrated, that went down like a lead balloon and he just threw them at my head.

I've just seen that he's only 4. Persevere! Speak to him about it when he is calm, use simple words. Explain he hurts you when he hits you and you know he doesn't want to hurt you so he needs to try to use the pads. constant reminder when you think he's about to need them, and consequences if he hits anything else. I found it most useful from the ages 4-7, then he was better able to express himself and frustrations etc.

Don't feel too guilty about DD, she will find her own friends and if you are honest with their parents about your DS, you may well find they are willing to take more than their fair share of reciprocal play dates, transport to parties etc. We did have to implement the rule that DS is not allowed in DD's bedroom without express permission and has to leave immediately she says (whereas DD goes into DS's all the time and they mainly play in there) so she has a space to retreat to if he's lashing out and being destructive.

I was on the verge of breakdown many many times when ds was that age. He's now 9 and no longer violent but there are still days when I just feel like giving up.

It was an incredibly lonely time, couldn't go anywhere without meltdowns and people staring and the strength of him. I quite often wanted to joke when people asked what his special talent was that it was super human strength and the ability to break glass with his squealing

I couldn't do it isn't bloody helpful. What would you do then? Give the child away

I’ve decided that next time anyone comments how they ‘couldn’t do it’ I’m just going to say ‘oh really, are you saying your love for your child isn’t unconditional then? Would you not love them if they were disabled? Wow!!!m

Also, to add, I don’t think any of us are cut out for it. I just think everyone has a different coping mechanism. Just like everyone has different levels of anger, jealousy, patience etc.

We all cope to varying levels and what tips one person over the edge, is a walk in the park to the next person.

You are doing your very best, that’s all you can do.

There will be days when you can’t see any light at the end of the tunnel. There will be days with little wins. Relish in the wins.

Today, has been a good day for me. Tomorrow will possibly be hellish. A good day is two school emails for child one and child two off sick so not having to deal with child two getting ready for school and winding up child three.

@BattenbergdowntheHatches I'm so sorry the school have not found other ways to work with your DS. He's so little still. Would they consider a reduced timetable for a temporary period of time? And surely with a 1:1 he doesn't need to be in the classroom all the time? (Btw DH and I work full time so a reduced timetable was a nightmare for us but it did help with the sheer overwhelm DS had in his first years at school. He also spent about 25% of the time in the classroom when he returned to full time school in Y2, often was in the library area or even the hall with his 1:1.)

I hear you on the meds side. Never thought I'd say it either but it's been life changing for DS. He's on slow release Equasym which lasts about 8-10 hours. The only concern with private for me is that you may end up paying in the longer term for meds - it's not guaranteed that the NHS will then fund a prescription. It might be different in your area though so worth seeing if you can find out.

Does your DS have an EHCP? We accessed the OT through that process too and that's how the support has stuck with my DS somehow. Same with the Ed Psych. The GP only referred to CAHMS because I literally went in there with a list of all the interventions we'd had to show we were at the end of our tether.

@cansu

No one is cut out for it. I think though that people expect a lot of parents of children with SN without any real understanding of the additional workload. I often say in my own situation imagine parenting a three year old and then do that for fifteen extra years. My children require same amount of supervision and it is not a few years of this it is forever. Who could possibly maintain this and still be a great parent.

Oh gosh this. I've been at this stage for 10 years now and knowing it's never going to get easier kills me. I'm just going to get older and life is only going to get harder, how can anyone commend themselves or feel remotely positive about that? 😔

It’s awful how isolating it is and how hard won support is. The systems are so overwhelmed and there are plenty of good individuals but they only stretch so far. It’s not good enough and the resources are so inadequate. I think parenting children with complex needs often requires more skill with less resourcing which is where the problem lies as opposed to not being a good parent. I’m sure you aren’t ill equipped but just woefully lacking the right structure and support. Not having the right educational placement or in school support etc etc. have you any connections with parents in similar situations?

The thing that's helped me more than anything is meeting people who have children with similar needs ,I'm lucky I have a group of friends that really get it that's been invaluable to me .

@x2boys

The thing that's helped me more than anything is meeting people who have children with similar needs ,I'm lucky I have a group of friends that really get it that's been invaluable to me .

I agree with this fully. The friendships I developed with other parents in similar situations have proven to be my lifeline.

Being able to go that today has been really shit and not be given ridiculous advice but just the reassurance of we've been there too is priceless.

Honestly I can’t imagine many people not feeling overwhelmed in that situation. I can’t imagine I’d cope well with one of the kids needing that level of support particularly now we’ve got used to them being fairly independent for lots of things. Frankly just trying to work and parent together through lockdown wrecked havoc with my mental health and I’m sure having a child with extensive special needs is significantly more demanding than that. You are doing your best and you are asking for support you need and aren’t receiving. It’s really shitty there isn’t more help available.

He's just broken the third television in the space of 6 weeks. Both his and DD's tablet screens are cracked too despite having quality cases on, both ones done by him. We/she can have literally nothing.

Today's trigger was needing to change his nappy. Unavoidable. People say learn his triggers, everything is a bloody trigger. He is permanently angry.

If I started to cry I honestly don't think I would stop today.

Insurance is pointless because the excess costs more than the second hand TV's we buy. We couldn't afford nor would we dare buy anything brand new with the way he is.

Every spare penny we have gets eaten up by needing to replace and repair things he trashes. I had to drop £200 on blinds a few months ago because he destroyed them.

We've been trying to save money to move and that pot gets depleted as soon as it has anything in it.

Lord give me fucking strength

@Troubleinpergatory join us in primary school auties thread on the SN children board. Even if we haven't got all the answers, we do have solidarity and understanding

[quote Mumofsend]@Troubleinpergatory join us in primary school auties thread on the SN children board. Even if we haven't got all the answers, we do have solidarity and understanding[/quote]
Thank you I'll find the thread

@BattenbergdowntheHatches

It’s very true about divorce. DH and I have had the “if we split up and go 50/50 on looking after DS, it will be easier for both of us”. Not because we’re unhappy or don’t love each other, but because we are wrung out and half dead.

It hasn’t happened (yet) but DH family - who were sooo over the moon to find out I was having a boy, but strangely silent on his SN - will not be understanding.

I completely feel you @BattenbergdowntheHatches I could have written every word of your post. I know it’s no help to your situation but you’re not alone ❤️

I don't want to be told I'm amazing for coping. I don't want people to tell me they couldn't do it when I'm barely holding it together. I am not amazing. I am the same as anyone else and I need help and support, not a pat on the back and an elevation to some sort of sainthood someone's created in their mind. I don't want awe. I want help.

@Troubleinpergatory

He's just broken the third television in the space of 6 weeks. Both his and DD's tablet screens are cracked too despite having quality cases on, both ones done by him. We/she can have literally nothing.

Today's trigger was needing to change his nappy. Unavoidable. People say learn his triggers, everything is a bloody trigger. He is permanently angry.

If I started to cry I honestly don't think I would stop today.

Insurance is pointless because the excess costs more than the second hand TV's we buy. We couldn't afford nor would we dare buy anything brand new with the way he is.

Every spare penny we have gets eaten up by needing to replace and repair things he trashes. I had to drop £200 on blinds a few months ago because he destroyed them.

We've been trying to save money to move and that pot gets depleted as soon as it has anything in it.

Lord give me fucking strength

The early days are especially hard ,you can feel very lonely ,my son is nearly 12 now ,he has severe autism and learning disabilities,he's still non verbal,he's at school full time,and we get very limited respite I do have a good supportive group of friends,however ,the advice I would give is look for local disability groups ,also go on any courses offered,yes they might be full of patronising stuff that you already know but ime, if you don't go on courses you will inevitably be told how do you know the strategies the courses give don't work if you have bnever been and then refused further help ,also it helps meeting other parents.

We adopted and it's been exhausting. Not any better in the teenage years. My life is like a treadmill. I'm dreaming of being able to go to a quiet holiday cottage for a few days with my husband. Little things

YADNBU. As others have said, most parents aren't cut out to handle SN needs, but they get on with it as they have no choice.

A couple of things that might help. You haven't said if he's verbal or non-verbal, but if he's non-verbal have you thought about teaching him Makaton to sign? Mine are older now, but they loved Something Special when they were CBeebies age and that's very good for teaching young children, and their parents, basic signing to help with communication. It might still be available on iPlayer or YouTube.

Also, if he's stressed out by nursery, is there somewhere calming he can go to transition from nursery to home - maybe a little tent in the corner of the living room or in his bedroom that you could perhaps make into a calming sensory area.

You said that changing his nappy triggered him. Did you drag him from something he was doing to change his nappy? It may be that the change in activity is too sudden for him, so perhaps give him a countdown and a warning, eg nappy change in 10 minutes, then nappy change in 5 minutes, then time for nappy change. My DS is 18, but sometimes he still needs warning and preparation for a change.

These may all be useless, but I've read them as suggestions for ASD children on here so worth mentioning in case previous posters haven't (sorry, I read all of your posts properly OP but just skimmed many of the replies).

DS is what I would call semi verbal. We did a 3 part makaton course but he didn't take to it because the hand movements stressed him out.

He can tell you what he wants/needs but there isn't much back and forth and alot of his speech is scripting and inaudible to most people.

He's definitely making progress and sometimes he'll really surprise me, like this afternoon for example.

After he smashed the tv he went for a nap, when he got up he wanted cbeebies on so I had to explain that it doesn't work anymore. He went to the back room and pointed on top of the cabinet (where I put the last little tv that he broke a fortnight ago) and said as clear as day "we have that one"

DH has bought yet another cheap one from gumtree and I've ordered a screen protector for it which should come Monday. I just hope it survives that long.

Thats £120 for the tv and £90 for the screen protector so we won't be going for our exceptionally rare Valentine's meal now (you can see how the cracks start to show eh)

I think going on some courses is a good idea if anybody can reccomend any particular ones that I can do in person? I did the Understanding Autism one with the OU online but to be completely honest it didnt tell me anything I don't already know.

Upon reflection I think both me and DH dropped the ball today.

DH gave him and DD smarties as a treat at lunch time. We don't allow sweets often purely because they almost always cause problems so he dropped the ball with that, but I didn't step in and say no.

DD eats them but DS likes to line them up, put them in cups etc. DS wanted DD's aswell as his own and that was causing conflict between them and he was getting frustrated.

Then I didn't give him ample warning before I took him to change his nappy (you raised a very good point Muddling and I should've considered that. We was in a rush)

I can see how the impromptu nappy change when he was already frustrated was the straw that broke the camel's back.

The benefit of hindsight eh. I guess I'm still learning and hopefully in time these things will become a rarity.

Sounds really stressful OP. My son went through a stage of breaking TVs but he was a bit older (10) in the end I stopped replacing them. We didn't have one for 6 months. I'm not sure that would work if he's only 4.

Is he in nursery? What help are they giving you?

Is it change in routine or transitions that is causing the outbursts? It might be that picture cards of what is going to happen next help.

It's normal to feel inadequate, there aren't the services out there. Everything is a battle.

@Troubleinpergatory

DS is what I would call semi verbal. We did a 3 part makaton course but he didn't take to it because the hand movements stressed him out.

He can tell you what he wants/needs but there isn't much back and forth and alot of his speech is scripting and inaudible to most people.

He's definitely making progress and sometimes he'll really surprise me, like this afternoon for example.

After he smashed the tv he went for a nap, when he got up he wanted cbeebies on so I had to explain that it doesn't work anymore. He went to the back room and pointed on top of the cabinet (where I put the last little tv that he broke a fortnight ago) and said as clear as day "we have that one"

DH has bought yet another cheap one from gumtree and I've ordered a screen protector for it which should come Monday. I just hope it survives that long.

Thats £120 for the tv and £90 for the screen protector so we won't be going for our exceptionally rare Valentine's meal now (you can see how the cracks start to show eh)

I think going on some courses is a good idea if anybody can reccomend any particular ones that I can do in person? I did the Understanding Autism one with the OU online but to be completely honest it didnt tell me anything I don't already know.

Upon reflection I think both me and DH dropped the ball today.

DH gave him and DD smarties as a treat at lunch time. We don't allow sweets often purely because they almost always cause problems so he dropped the ball with that, but I didn't step in and say no.

DD eats them but DS likes to line them up, put them in cups etc. DS wanted DD's aswell as his own and that was causing conflict between them and he was getting frustrated.

Then I didn't give him ample warning before I took him to change his nappy (you raised a very good point Muddling and I should've considered that. We was in a rush)

I can see how the impromptu nappy change when he was already frustrated was the straw that broke the camel's back.

The benefit of hindsight eh. I guess I'm still learning and hopefully in time these things will become a rarity.

Whose your son under ,Paediatrician ,portage etc? They can refer you for courses such as Early bird ,Early bird + ,I have also done the Triple P stepping stone,s it's adapted for learning disabilities ,in the early days you might learn things from them ,but they are a good way of meeting other parents .

@Troubleinpergatory

DS is what I would call semi verbal. We did a 3 part makaton course but he didn't take to it because the hand movements stressed him out.

He can tell you what he wants/needs but there isn't much back and forth and alot of his speech is scripting and inaudible to most people.

He's definitely making progress and sometimes he'll really surprise me, like this afternoon for example.

After he smashed the tv he went for a nap, when he got up he wanted cbeebies on so I had to explain that it doesn't work anymore. He went to the back room and pointed on top of the cabinet (where I put the last little tv that he broke a fortnight ago) and said as clear as day "we have that one"

DH has bought yet another cheap one from gumtree and I've ordered a screen protector for it which should come Monday. I just hope it survives that long.

Thats £120 for the tv and £90 for the screen protector so we won't be going for our exceptionally rare Valentine's meal now (you can see how the cracks start to show eh)

I think going on some courses is a good idea if anybody can reccomend any particular ones that I can do in person? I did the Understanding Autism one with the OU online but to be completely honest it didnt tell me anything I don't already know.

Upon reflection I think both me and DH dropped the ball today.

DH gave him and DD smarties as a treat at lunch time. We don't allow sweets often purely because they almost always cause problems so he dropped the ball with that, but I didn't step in and say no.

DD eats them but DS likes to line them up, put them in cups etc. DS wanted DD's aswell as his own and that was causing conflict between them and he was getting frustrated.

Then I didn't give him ample warning before I took him to change his nappy (you raised a very good point Muddling and I should've considered that. We was in a rush)

I can see how the impromptu nappy change when he was already frustrated was the straw that broke the camel's back.

The benefit of hindsight eh. I guess I'm still learning and hopefully in time these things will become a rarity.

Oh sending love to you. Not in reference specifically to this post of yours but to all of them, I've just spent the past hour reading through.

We have an 8 year old son who is autistic, he's non-verbal with huge sensory issues and gets more and more physical as he gets more and more frustrated with not being understood nor able to express himself.

With regard to the disability social work team, I had a nightmare trying to get them involved. It took two years, I first contacted them when my son was 5. We had an assessment when he had just turned six and when I got the report six months later they said he could access 'universal services' as I had taken him to relaxed trampolining and swimming sessions. Ridiculous, my son was - and still is - functioning as an 18 month old so activities for 6, 7 year olds were never going to be accessible to him. Anyway, after receiving the report (eventually), I made a complaint to the Head of SS and they reassessed the following year. My complaint was really strongly worded and talked about every negative aspect of my son's life, it's so counterintuitive to do that but we just learn to do it... DLA etc. He now has 2 days per week in holidays in an autism-specific holiday club and is on the waiting list for respite. In our LA respite provision starts at 6 years old so that may be the same with you.

Please persist with the social services department, they will bat away anyone they can so you need to keep on... They rely on people just trying once and then giving up feeling there must be other, more 'worthy' families. There has just been a big funding boost announced for respite and short breaks I believe. It won't touch the sides in terms of need, but it's better than not having it. I want you to get holiday clubs or a PA and eventually respite, I am happy to help you contacting them if that's something that can help you.

It is a largely thankless and difficult life. I love my son more than life itself but I am at the end of my tether more days than not, I can only push for what might help him and us. Sending love and solidarity.