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Needing some support

(48 Posts)
nannynoo Mon 09-Nov-15 01:13:24

Hi - As many of you know I have been caring for my Grandson with special needs full time for about 4 months and so FAR it has been going really well! smile

He is so happy and secure now but this weekend has been the WORST time since he got here!! sad

My stress levels have been at their worst and it is awful to see him so unsettled again sad ... What seems to have triggered it is a lot of confusion over his Mum and contact visits etc , she has missed SIX OUT OF SEVEN contact visits over the last 7 weeks in a row

Usually she lets me know in time , although we have been halfway there before and THIS time we were at the contact centre and she did not show or let us know and little one was disorientated , so we played together in the usual room for the usual time but then AFTERWARDS his behaviour took a turn for the worse and I have had the weekend from hell with him sad

Due to his Autism he cannot tell me how he feels so I asked him if he was upset because Mummy didn't come to contact and he just said ''bye bye Mummy'' which he has been saying recently due to not seeing her for so long to the point he usually does NOT even want to go to contact at present and seems relieved when she cancels and just happily gets on with his day but this weekend was different , it really ''threw'' him and he has been refusing to go to bed or get in the bath or go to school tomorrow has been more insecure and grumpy and 'difficult' than usual and is like a completely different child since Saturday

Obviously he has mixed feelings about his Mum BUT I can't take the way this has made him feel and complete DISRUPTION it has caused us as a family as he was doing so well and this is a complete step backwards

I stayed longer with him at bedtime tonight to give him extra kisses and cuddles to help make him feel secure and happy again but he did not settle off to sleep as peacefully and happily as he usually does and I have a feeling I will have big trouble with him in the morning getting him ready for school sad

I know his behaviour is due to the EMOTIONAL impact to what is going on re contact and I have sent the SW 2 e-mails asking her to contact me as I had already asked her to reduce it to once a month as that is all his Mum seems to be able to ( just about ) manage at the moment as she is highly struggling with her alcoholism and definitely needs some extra help but what about little man and the IMPACT all this is having on him plus the FALL OUT I have to endure / try and deal with the absolute best I can which is still DIFFICULT as it has been the worst weekend ever since he got here and I DO NOT want it to keep happening once he goes back to being happy and secure again and I did make this clear to the SW but it doesn't really help me cope with things as they ARE as it has been a hellish weekend for both of us and even the DOG who was whimpering outside my GS's bedroom tonight as he can SENSE there is something wrong / my GS is unsettled as they are very close and dogs are very sensitive but even the dog was playing up this weekend and joining in with things as he just joined in with the atmosphere and didn't help things by eating my GS's banana I had saved for his dessert with custard which he LOVES and it was the last banana so MORE meltdowns then on top of the other ones , one after the other plus doesn't want to go to school tomorrow but he has been so amazingly well behaved up till now due to being so settled and sad as it is he is now PLEASED when his Mum cancels contact and yet when it was regular he did look forward to seeing her of course so is so confused and unsettled but he needs some CONSISTENCY in his life and even the contact centre manager is surprised this has been allowed to go on for 7 weeks now as the SW is fully aware of it as gets all the reports plus I update her but it is having a NEGATIVE affect on lo and ME now and the whole atmosphere in the home which even the dog is picking up on , so I could do with some support please :-( x

Grandma2213 Mon 09-Nov-15 02:27:16

nannynoo you sound as if you are really struggling at the moment and yet you have done wonders so far. Your DGS is very lucky to have you. As he has autism he will need routine and predictability but this is not what he is getting. His mum clearly needs support too but the child has to come first. Surely the SW can see this and should consider changing the frequency of the visits if she cannot manage them,

I have worked with autistic children and each one is different. if your DGS can draw or scribble sometimes this can help express his feelings. Even though you may not always understand what he is trying to say at least he has expressed it.

I have a 6 yr old DGD who is not autistic (though she may be on the spectrum) and when she is angry she writes at length to vent her fury. It is very garbled but occasionally I pick up what she is feeling. She also does not settle well at night and I found that stroking her with a soft make up brush helped. She now gets the brush herself and strokes till she falls asleep.

You have achieved so much nannynoo. Hang on in there. I am thinking of you. flowers

Wendysue Mon 09-Nov-15 04:07:53

So sorry about this terrible weekend, nannyoo! Poor GS abd poor you! It must be so much harder for you both since he can't really express his feelings! Lots of hugs!

I'm impressed with your strength and courage throughout this awful weekend though. Also, I think your suggestion to the SW was very wise... more realistic for the mom and less stressful for you and GS. Don't know if I could think so clearly in all that emotional turmoil. For this and other reasons, I think Grandma 2213 is right, GS if very fortunate to have you in his life.

It sounds as if the SW hasn't gotten back to you yet. How frustrating! Could that be cuz it's the weekend? That stinks, I know, but maybe she'll get back to you tomorrow.

I hope you're able to get GS off to school tomorrow. However, if you can't, please don't worry, it's just one day.

Will be thinking about you and checking back in...

jogginggirl Mon 09-Nov-15 07:53:07

Ohnannynoo what a difficult time for you and DGS - it must be heartbreaking for you. I do hope the SW gets back to you with a decision that supports your efforts and helps your DGS to settle back into a routine that better suits his needs.
You are doing an amazing job in the most difficult circumstances- I have great admiration for you.
I hope sleep has helped the little man and that he is happy to go to school - but as Wendysue said - try not to worry, it is only one day. Sending good wishes and flowers

vampirequeen Mon 09-Nov-15 13:37:05

What a difficult situation. My gut reaction is to stop contact but I guess that's not the best option in the long run.

It's hard to tell what an autistic child is thinking or feeling. Perhaps he doesn't even know himself. I wonder if somewhere deep inside he feels that his mother doesn't care/he's not good enough to be cared about. He can't express his negative emotions in words so you're getting them in his actions. If you do manage to get him to school tomorrow make sure the staff know what's happened. Is he at a special school? If so, they may have ways of helping him.

If the social worker isn't replying to you then phone to speak to his line manager.

nannynoo Mon 09-Nov-15 15:47:41

Thank you so much for your help! smile smile

I am still recovering from the weekend but am hoping we have just a simple , lovely evening together like we usually do and that everything is ''back to normal'' it is surprising what a pleasant , happy evening together can do for us and our spirits , the dog seems to have perked up today and I feel better after some sleep AND my GS protested a LITTLE bit this morning but no way as bad as I thought it would be and he went off to school 95% happy

I really do feel it is around feelings of rejection , he is probably fed up of being let down and feels she doesn't care about him and that is A LOT to get out if you don't have enough words , hence it coming out in his behaviour which is fully understandable even though hard for me

I missed the SW's call this morning as was catching up on some sleep! lol

Am sure she will call back again and at least is treating it urgently hence giving me a call ( twice!! )

Luckygirl Mon 09-Nov-15 16:58:39

One of the difficulties of having struggled so hard and so ling to achieve the current situation is that it is tempting to feel that you cannot ask for help. I do not think this is the case and you should ask for and take all the help you can get.

trisher Mon 09-Nov-15 19:08:50

Agree with all the comments, you are doing an amazing job. I wonder if you have been in contact with the National Autistic
A friend who just had a late diagnosis of autism for her daughter said they were very helpful. Perhaps you need someone to talk to him who understands his condition, or maybe someone who could help you. Hope you can work something out and he and you soon have happier times.

Iam64 Mon 09-Nov-15 19:23:07

Hi nannynoo, please tell me if I have this wrong but from reading your post, it sounds as though contact is weekly, at a contact centre with you present to support your grandson.
As your daughter is struggling and has missed 6 out of 7 recent contacts, I'd expect a review of your grandson's care plan/contact arrangements. The sw should be meeting with your daughter to discuss, spending a bit of time drawing/etc with your grandson, talking to you and to school to clarify the impact on your grandson as well as on you/his placement.
It sounds as though contact would be better at a maximum of fortnightly and I'd suggest monthly direct, with maybe a phone call, or better still card/letter mid way through the direct contact.
Is there a contact officer present? Maybe they need to revert to your daughter phoning to confirm she'll be attending, before you set off with your grandson.
I do hope things settle down for you and this little boy

rosequartz Mon 09-Nov-15 21:52:38

nannynoo There's not a lot I can offer in the way of helpful insight, just to say you are doing a wonderful job and I hope the SW can work out a better arrangement for your little DGS to see his mother less if she is going to be unpredictable. The suggestion that you ask for confirmation before you set off is a good idea - although I do realise that he needs to be prepared for any visits and not have anything sprung on him at the last minute. DGD's little friend has autism and copes very well, but he has to be well prepared in advance for anything out of routine.


NfkDumpling Mon 09-Nov-15 22:35:51

You say he says bye bye mummy when he doesn't want to see her? Could it be that he doesn't want to have the visits so he doesn't have to cope with the disappointment? It must be terribly hard for him.

Perhaps if the visits were cut down for the time being he won't get so anxious as he'll have more time to settle in between? It may also give his mum a bit of a wake up call. Is there someone other than the social worker who can advise? His psychologist?

rosesarered Mon 09-Nov-15 22:47:53

For what it's worth, I think that you are doing all that you can, and doing really well.Those of us who deal with our autistic grandchildren know well that a meltdown is always lurking around the corner, sometimes over a minor ( to us) thing, the wrong shoes, a meal etc.You have been very brave for having him to live with you, and you will have highs but many lows as well.It's marvellous that he now has you to care for him, hopefully SS will continue to be involved and help you.How can we not love these little lost boys?

Anya Mon 09-Nov-15 23:13:24

You are doing a wonderful job nannynoo - hang on to that thought. You have our greatest respect for the stability and unstinting love you give your grandson.

nannynoo Tue 10-Nov-15 02:13:20

Thank you so much , am feeling much better today and little man has bounced back to his normal self and said ''school tomorrow'' with a big smile on his face just before bedtime which was a ''normal'' bedtime with him happy and settled with no worry on my part tonight thankfully

He played up a little bit at school , kept asking for me bless him , his boat had definitely been rocked sad

It does upset me when he is upset especially when it is his own Mother who ( unintentionally ) upsets him but she really does need to get some help ASAP and yes I think he says ''bye bye Mummy'' to protect himself and to keep everything nice and consistent and secure like it is , at least there are ''certainties'' in his life with me , everything is like clockwork and he likes it like that , he knows what to expect and is prepared for any changes but the UNPREDICTABILITY of his Mums visits has him unsettled and feeling insecure again and we CAN'T HAVE THAT ( not anymore after this 'experience' ) so am sure it will be soon sorted out with the SW so that it doesn't happen again as his interests are FIRST and paramount and his happiness and security is the most important thing here

I think a 'confirm before you arrive' is a good plan but I still feel it needs to be cut down to once a month but for her to be CONSISTENT with that as if she starts missing those as well it is going to disrupt him even more and cause him to think she does not care about him which is SAD! :-(

Saying that it is such a relief he is BACK TO HAPPY AGAIN and so am I to see him so happy and settled back to normal again , it is great and I can just relax and get on with things as normal now and he NEEDS normal and to be honest so do I as I love it because everything is so much easier and free and downright ENJOYABLE , we have such FUN together too and every day we laugh so to see him so sad was heart breaking for me as I want it to continue as it has been and I will make sure IT WILL for HIS sake! xx

NfkDumpling Tue 10-Nov-15 07:37:44

I'm so glad he's back on a more even keel again. You are his rock and it must be a great strain for you sometimes. I hope you're getting the support you need too. Take care of yourself. flowers

Anya Tue 10-Nov-15 07:39:23

Really pleased to hear things are getting back to normal nannynoo and that you've come back to tell us sunshine

annsixty Tue 10-Nov-15 07:43:26

What a relief for you that he is settling down again. You must keep on pressing the SW for a solution for you all, it is too unsettling and Mum must be made to see she cannot continue to upset you both.

Iam64 Tue 10-Nov-15 08:16:05

Thanks for letting us know your little boy has settled more nannynoo. Those of us with autistic children or grandchildren have first hand understanding of how important routines are.

Good luck in talking things through with the social worker. It's very sad that your daughter is in the grips of drink but you are so right to focus on your grandson's needs.

Wendysue Tue 10-Nov-15 14:14:25

So glad to hear things are better, nannyoo! Thanks for letting us know!

I hope the SW helps you cut the visits back to once a month. You're absolutely right, IMO, GS' interests must come first. TG, he has you to advocate for him!

jogginggirl Tue 10-Nov-15 17:55:42

That's excellent news nannynoo - thank you for letting us know smile
You sound like a lovely, lovely nanny smile

nannynoo Sat 28-Nov-15 21:05:10


This time bm DID show up but then little man still has trouble processing his emotions and is more unsettled when contact goes ahead

He is MISERABLE right now ( and so I am I to be honest after dealing with all his emotional fall out , grumpyness , difficult behaviour , tears ALL DAY , insecurity , unsettledness and feeling downright overwhelmed , bless him! )

I feel helpless because we can't simply ''talk it through'' and even if he could talk fully I still feel as an 8 year old child he would have difficulty expressing it and proccessing it as it is a lot of different emotions to process all at once but is DEFINITELY triggered by contact with Mum , sad because it means he misses her etc BUT the emotional fall out is NOT good for him or ME and I am exhausted and yet know it usually lasts for a couple of days at least till he settles down again .... only for it to start up again so I have asked the SW AGAIN for it to be reduced to once a month as she has already told me after the SGO they are looking for a contact order of 4 times a year , the rest at my discretion so why can't they reduce it in the meantime???

It is not as if improvements have been made her end , still just as bad if not worse than ever but if she DOES manage contact she seems to feel she has ''done good'' and earnt her right to MORE

Funny thing is the SW is meeting with her next week to discuss contact ( at last! ) and I am pushing for LESS contact , my daughter is pushing for MORE contact especially over Christmas ( even though she can't manage it most of the time when she DOES manage it she feels she has done something great ) and the SW is in the middle of it but am hoping she will side with THE CHILD at the end of the day as this is NOT good for him or ME as his CARER sad

He is usually such a HAPPY little boy so it is so disturbing and heart breaking to see him so MISERABLE right now sad sad sad xx

nannynoo Sat 28-Nov-15 21:20:48

Am annoyed with my daughter as it's ''see him on her terms when she can be ready to do it'' and even if she knew how much it disturbed him afterwards I know she will not want it reduced even though she is not managing it anyway and I have better things to do than get up early every Saturday morning after a BUSY week , get us both ready only for a text to come through at the last moment cancelling it OR if she does show up it's like she deserves a medal

I know she is full of GLEE at the ''contact is at my discretion'' after SGO as she THINKS she can have a free for all and see him whenever she likes because I will ALWAYS SAY YES ... Well LITTLE DOES SHE KNOW because I am there to PROTECT lo from any distress and unsettling things happening to him , so she will be in for a further shock when I say NO

She keeps saying ''he is MY son'' well YES HE IS so why not concentrate on getting yourself better / well for HIM and herself rather than think she can STILL DRINK REGULARLY AND ALSO SEE HIM REGULARLY as the 2 don't mix and if she was in recovery / recovering well there would be more REASON for her to see him more often or even have him RETURNED to her one day but is making NO effort to get any HELP for her addiction and yet still wants to see him ''whenever she wants'' and have the best of both worlds , well THIS IS ABOUT HIS WORLD , NOT HERS!!! angry angry angry

nannynoo Sat 28-Nov-15 21:22:28

I WAS feeling sorry for my daughter before but NOW I am feeling sorry for my GS!!! sad sad

annsixty Sat 28-Nov-15 21:35:31

You should always have been thinking of your GS as should have been the SW, his needs are paramount and should be THE only consideration. You are dealing with a terrible situation. All prayers and thoughts are with you and a good result for you and your GS.

nannynoo Sat 28-Nov-15 21:50:07

Yup she does miss him badly but sadly enough it is not enough inspiration for her at the moment to get herself clean from alcohol and weed sad

I am the one who has been ASKING for months to have contact reduced because of the affect it has on him whether she shows or not , but it has carried on and on at weekly with my daughter not really managing it but it still in place for the times when she DOES , it all seems to be built around her , even though they think it is good for lo to see her am not too sure about that as she / everything is so ERATIC , not constant , consistent or stable

It doesn't help that I have this hope ( that I am currently losing ) that she will get well one day so if contact is stopped or heavily reduced it will be a big step for lo to then be returned to Mum if a court ordered it

Poor little man in the middle of all this! sad