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how do you cope?????

20 replies

mixedemotions123 · 02/05/2006 16:36

Sorry this is a bit pathetic but I could quite cheerfully blow my brains out. My 7yr old ds is ASD, to the best of my knowledge, my 4.5yr old ds is 100% not. The two of them have to fight over absolutley everything, and it is driving me to distraction. They seem to spend half their life beating each other up, and the other half shouting and screaming at each other. I was in the loo today, my 7yr old screamed, I opened the door only to see him scratch his own face, instantly saying that his brother did it. He is constantly asking me the silliest questions over and over again. I know this is all part of his Autism, and I try so hard not to shout, but sometimes I lose my patience. He is really paranoid if anyone looks at him. He doesn't bat an eyelid when he is walking around a carboot sale with hundreds of people around him, but if I take him in a shop and someone looks at him or god-forbid smiles at him, he freaks out, and panics like mad. He will not go upstairs alone without a nightmare, and if he is ever upstairs with his little brother, he will dress up in 3-4yr old clothes. If he could only listen to reason, and accept my explanations for things, it would be a lot easier for me, and so much less stressfull for him.
I know my problems are so trivial compared to what so many of you have to deal with in daily life, and that my ds cannot help the way he is. ds2 is like a little sponge who absorbs all of it, and his behaviour at the moment is getting worse and worse.
I just wish I could handle things better, not shout, and not let it get me down, as I know that does neither children any good. Sad

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coppertop · 02/05/2006 16:56

It's not pathetic or trivial at all!

After the Easter holiday from hell I can definitely sympathise. My 2 boys were at each other's throats constantly and I turned into a screaming harridan. Blush

Do you have access to any kind of support? Is there anyone you can leave your boys with while you get out of the house for a walk or something?

Sorry you're having such a tough time of it. :(

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mixedemotions123 · 02/05/2006 17:14

My dh gets home from work at 6.00ish, he is the only one that I could leave them with. He is one of these men who just wants to come home to a stress free,smiley house after a long hard day Shock. Some days just seem to be so much worse than others. Ds psych has suggested increasing his dose of Risperidone as it seems to be becoming less effective. I just worry incase it is me that is making him worse by not dealing with his anxieties etc in the right way.
We do get visited by child mental health specialist, she is due to come out on the 9th, she gives me advice and is really supportive, but she very rarely sees my son and has only actually worked with him once in the last 12/12. She seems to be more of an advisor which is great, but there is no one during the day when things get tough. MIL lives 7 miles away, but she is old school and doesn't believe there is any real problem with ds, although she doesn't jump up and down offering to babysit.Grin. my family all live 70 miles away so it is not that they won't help. They would if they could. Ds will not go and stay over even for a night, we have tried.

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Peachyclair · 02/05/2006 17:31

mixedemotions, having spent last evening in A&E with AS related sibling injury i totally sympahise with what you are going through. Copuld your parents come and babysit overnight at your house perhaps?

Print off you initial message to show to the worker on the 9th. In meetings it is easy to forget half the bad times, but you need to find the help you need.

Good luck
X

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Lillypond · 02/05/2006 17:47

You're not pathetic. My DS (4 yo) is autistic as well and I have days where I hate my life. I hate all the stupid, pointless routines and I'm angry with everyone, but mostly DS for not being NT and me for not being able to handle him.

Hope things feel better soon. xx

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macwoozy · 02/05/2006 18:11

It's hard work bringing up any child, but with a child who has ASD it's a constant battle. I've felt like you on many occasions, and even today I've become annoyed with the constant asking of the same questions over and over again, resulting with me snapping at my ds who just doesn't deserve my impatience and anger, but I bet you there's not a single person out there who wouldn't feel exactly like you do right now if they had the same daily battles that you have to cope with. I really hope things will soon improve for you.

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mixedemotions123 · 03/05/2006 07:28

peachyclaire, sorry to hear about your little ones injury. Hope he is ok. My father lives in oxford and is unwell (Alzhm) and my mum has passes away, so it only leaves my mil who lives local. She is in her 70's, and not really able to cope with my two. We had a young lad babysit once, my ds unfortunatley was sick when we got home, so now he associates the two, and believes that if we are not here he will be sick!.
Lillypond, sorry to hear that you are in the same boat. Its the way it makes you feel when you can see in their eyes that they really don;t understand why you are shouting, or the look of insecurity that just because somebody has looked at them, they feel threatened not only for themselves, but for you as well. I know it must be bloody awful living in my sons world. to an outsider he looks 100% normal, so people don't see any reason for his reactions.
Macwoozy, sorry for you too. If only they could feel able to trust and believe the answers and explanations that we give, life would be a lot easier, and I for one would not feel so inadequate for not being able to make him feel safe and secure.

Oh well, I guess today is another day, chin up, count to 10, and lets do it all again. Smile Grin Blush.
Thanks everyone for your support.

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mixedemotions123 · 03/05/2006 13:09

So much for chin up, ds had his first major meltdown in school this morning. He was hysterical begging me to take him home. The lsa eventually told me to leave him, which ripped me to bits. I don't know what triggered it, he was fine until he went into the class. School have just called to say that he has calmed down, but is very anxious, constantly asking if I am going to pick him up, and am I going to leave him there?. Poor little mite, I wish I could find a way of making him feel secure. I would give my life for him, and he is so screwed up at the moment.

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suedenley · 03/05/2006 13:43

hi mixedemotions
sorry to hear your ds is struggling with school, i can totally identify with everything your going through,i have three kids 1 dd 16 2ds's 1 is 10 and AS other 7 and not though he copies brothers behaviour so much its hard to tell.They fight argue scream and smash the hell out of each other constantly thoughout the day, mostly i feel like a referee rather than a mother and sometimes feel isolated because no-one i know has children that behave like mine.
my ds with as is also struggling with being at school,so ive had meetings with the head and the senco, does the school listen to you ?mine didnt so i took along jat key worker now they have arranged for cids to come in and assess ds i take strength from the fact that if i dont help him no-one will so i keep on fighting to get him what he deserves.
Ive asked and got ds involved in lots of social inclusion activities after school and during holidays this helps me cos i feel im doing something positive,helps my ds as he gets to play with kids who dont tease him or bully him for being different and its good for my other two cos they get to spend time with me and there dad doing things that dont revolve around their brother.
Other than that however hard the day has been i always go in and look at them when they are asleep cos they look like little angels when they are sleeping and they melt my heart and then i can get through the next day. Good luck i hope you find some coping strategies.

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emmalou78 · 03/05/2006 14:23

Hi.
Sorry your feeling like this,I don't have any magic answers I'm afraid...

I keep trying to write a reply but it turns into a why my life is crap rant and I'm trying to stay focussed on the bloody statement report...

I know CDC in chesterfield have a monthly support group for parents who's kids are ASD, it clashes completely with preschool so I 've never actually made it along, but our psych consultant runs it and assures me it IS very good [without naming her in public her first name rhymes with barrel and her surname is the same as the friendsly ghost... it might be an idea to get in touch with her?] that wll only make sense if I have the right person and you are someone who used to live in the ever lovely newbold..

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mixedemotions123 · 03/05/2006 18:27

thankyou for your replies. I couldn't agree nore about when you look at your children sleeping. It makes everything seem so much more worthwhile. His school do not seem to understand the level of anxiety that my son has, eg, this morning they said that it was most probably due to him having 4 days off. In a nt child that would probably be true, but with ds his mind doesn't work like that. He was fine until he saw a lad that constantly upsets him. Schools answer was that nothing had happened recently to justify his anxiety today. Problem is once something happens to him, he never seems to forget, and the anxiety related to a particular situation pops up out of nowhere when you least expect it.
Suedenly, I am a bit green to all of the terms used on here, what is CIDS???. It is great that you are able to get your ds to do out of school clubs. We have tried this on many occasions, football, gymnastics, karate, all without success, the longest we have managed is two sessions and then he point blank refuses to go back. His life revolves around us as a family, and the only time he is without us is when he is at school.
Emmalou good luck with your statement forms, I know how hard they are to do. I have recently done the same for ds, and you feel as if all you are doing is critisizing your little one. You lose sight of why you are doing it all for a while don't you.
We live in Southampton area so I am not familiar with the psych consultant that you mentioned. My son sees a psych and also a childrens mental health specialising in ASD, that is the only people that we are in touch with at the moment.

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suedenley · 03/05/2006 20:43

Hi again mixed emotions
cids is an autism team that come into school it stands for communication interaction difficulties services. They advice the the school on what your child needs and liase with the lea they take on board what you have to say too apparently but i wont find out more til the 17th so i will keep you posted.
my ds cant join in with most things but found a group called socops social and communication opportunities for asperger kids he loves it as no one minds how he behaves or laughs when he talks for england about traffic lights and he has made a couple of friends who know just what he thinks and feels,he loves it. We went bowling recently and he had a great time.Ask your consultant gp or social services if there is anything in your area its def worth itSmile

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suedenley · 03/05/2006 20:56

oh and where the school are concerned you know your ds much better than they do,the autistic spectrum is wide and each child is affected by different traits so stand firm if you know that things that happened earlier cause him to be anxious at school keep telling them til they listen, unfortunatly they don know enough about asd's,but you do you are an expert you live this everyday.My son is still anxious about being taken out of the school play at xmas we are only just getting his sleeping pattern back they need to be aware that things affect our kids much worse and for much longer. sorry started a rant there.
Good luck dont let em grind you downGrin

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emmalou78 · 03/05/2006 21:44

thats me confusing you wiht 'mytwopenceworth', your names start with an 'm' not sure where my brains at today Grin but obviously if your CDC has any support groups it might be worthwhilst.

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mixedemotions123 · 04/05/2006 08:09

many thanks you twoSmile
As of yet we have had no involvement with Social Services. My dh is really against contacting them, I am not really sure why as I have only heard good things about them recently. I think he feels that they get involved when you cannot cope and he doesn't feel that negative at the mo. Keeps telling me he will come out the other side of it all. Hope he is right and wish I could believe him. Its great that your ds has an outside life that he enjoys Suedenley, I cling to the hope that someday Callum will find the confidence to feel able to give things another try.
Emmalou, don't worry, I am really a novice at mn and you have enough on your plate with your own situation. It means a lot that you took the time to answer my post
I don't know where I would be without mn, I do not have much opportunity to talk to anyone else, not only about my son, but things in general. Somehow the subject always seems to go back to him though. Blush

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Davros · 04/05/2006 18:17

Hi mixedemotions, I'm afraid I haven't read all of this, just skimmed but I think I know how you feel too. Please don't be put off contacting Soc Svs, they really can offer help and support that you, your DS and your family are entitled to. Of course not all Soc Svs depts are as good as others so you may find it hard work at first but don't see it as a last resort when you need them taken away! (I wish! Grin). WHen you're feeling better, contact them and find out what they can offer. If you can find out what yours are like from other parents first then that might help. Mine are an absolute lifeline.

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mixedemotions123 · 04/05/2006 19:16

Hi Davros
Thanks for your advice, I will contact them soon, I just need to get dh to agree to it Grin. He has had a better day today, but I have spoken to Psych and she has said to increase his Risperidone to 0.75ml as his anxiety has gotten such a hold over him. Hope all is well for you and yours.Smile

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suedenley · 04/05/2006 20:43

hi again
yes dont be scared of social services the joint agency team is there to help you get the services available to your ds and your family.They can help with finding placements at holiday play schemes and provide the extra funding required to supply extra staff to take care of him, they can sort out respite,assist you when dealing with the school,help with dla forms and put you in touch with other mums in your area so you can have a chat or a moan. The key worker you get assigned works for and on behalf of your child unlike the senco who works for the school.I think you will find things easier to access with one and they are not at all scary mine sons is lovely.hope all works out Smile

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cat64 · 04/05/2006 21:22

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mixedemotions123 · 05/05/2006 07:26

thanks Sue, I will def work on hubby. I think he wants to bury his head and pretend things are not so bad, he idolises him and would do anything for him. This is something that he is going to have to accept.
Cat64
I love the idea of a weekend away Grin, I would probably miss the kids too much though Blush. I agree with you though, he feels weekends are awful and never happy times. I can see his point, but that is the only real time he gets to see life as it is here the vast majority of the time when he is at work. (or playing golf) Envy.
As far as I am aware the school have used a visual timetable in the past, I think that up until now he hasn't been too worried as I am Always there to pick him up. It just seems to have become an issue again recently. I am glad in a way that he is repeatedly asking his teacher because at least he is not bottling the anxiety up. And maybe he might wind her up a little bit Grin Blush

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mixedemotions123 · 05/05/2006 07:28

My god did I REALLY say that, shame on me Blush

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