not coping :(

[cardiff_mum]

im sorry im jus having a really bad day, i really am questioning wheather i can cope. i cant stop crying, feel so negative, i dont know if tomorrow will b better,and im scared incase its not i have the question always in my head, y my child? i know its wrong, but i cant help it. im so scared of any one thinking i cant cope, im Js mum, i have to b strong, deal with everything, but i cant, n i cant tell any1. i dont sleep, i dont eat, i dont think i go 1 minute without something to do with this in my head. i cant stop it, stupid questions like will he ever get married (he's 4!!!!) will he get invited to the birthday party i know his classmate is having (highly doubtful, J's only been invited to 2 parties in nearly 2 yrs of school) and a million other questions, and things jus in there and i cant stop them! im sorry for sounding so negative, im normally such a positive person, but this, this has changed everything.

i feel like im grieveing for the life my boy should have had. is this wrong? i dont know, im so confused

[justine1]

im sorry im jus having a really bad day, i really am questioning wheather i can cope. i cant stop crying, feel so negative, i dont know if tomorrow will b better,and im scared incase its not i have the question always in my head, y my child? i know its wrong, but i cant help it. im so scared of any one thinking i cant cope, im Js mum, i have to b strong, deal with everything, but i cant, n i cant tell any1. i dont sleep, i dont eat, i dont think i go 1 minute without something to do with this in my head. i cant stop it, stupid questions like will he ever get married (he's 4!!!!) will he get invited to the birthday party i know his classmate is having (highly doubtful, J's only been invited to 2 parties in nearly 2 yrs of school) and a million other questions, and things jus in there and i cant stop them! im sorry for sounding so negative, im normally such a positive person, but this, this has changed everything.

i feel like im grieveing for the life my boy should have had. is this wrong? i dont know, im so confused

Hi sorry you having a bad time at the moment. I felt like this a week or two ago lasted about 8 days but after coming on here and talking to my mum(who I only talk to every four months cause she is abroad) I felt much better.So I am sure you will feel better soon.I do know what you mean about grieving for the child in a way,I do sometimes feel the same,but I have four boys one is AS the other three not and my eldest (NT) is really intelligent,lovely natured easy going boy and always think he is going to be great and successful whatever he does but we can never tell what this life will bring my Sam (AS) may be even more successful then his older brother.All I ever pray is that I can be there for all my kids whether they have disability or not,to be there when they happy or sad.I will do my best to raise them and hope they will be responsible adults.I dont think I worry much about if he will marry or if he will go to parties,your son is two yrs younger but he has at least been to two parties Sams been to one when he was at nursery!I think I just take each day step by step,I have so many other things to worry about dont have time to think of the future really!I think reading posts from adults on here with a dx of AS and seeing that although they have struggled they seem to be doing alright,nobodys life can be perfect and straightworward all kids will have problems at some point in their lives,all we can do as parents is love and support them as best as we can.I really hope you feel better soon <'> <'> <'>

[cardiff_mum]

ty, for taking the time to reply to me, knowing that im not the 1st mum to go through this helps me immensly xxx

[JsMum]

<'> its defo normal what it is called is the beareavement process and it is not very pleasant as there is a rollercoaster of emotions, I think its already been said that you do indeed have to take one day at a time, its also essential you take good care of yourself over the next few weeks, when I dont sleep or eat that is dangerous ground as you loose all reality and you can spirral down to depression so it is very important that you get some support for your own needs, I believe very much in the saying we have to look after ourselves first so that we then can look after others.

 

It is a very difficult time for you right now, and the thoughts your having are just overloading you at the moment, I dont know if J will get married or if he will work, but there is some parents here who have very positive stories to share when there kids get jobs, and then live independantly with support, the future is a long way off right now, no can tell you but no one told the parents here that there kids would and could do the things their children can do as they are now adults.

 

I would contact NAS who will help you throw this process and send you some further information and advice, I have to recommend a book too as it goes throw the greiving process too.

 

Autism spectrum disorder The complete guide Chantal Sicile Kira page 54 is spersific to what you are describing right now.

 

So basically it is normal what your going throw, you are doing a fabulous job and Im sure your coping much more than your believing, though it may seem very real to you that you cant, its surprising just what we do cope with in the end.

 

Your much stronger than you think, but it is a tuff process, give yourself some time to look at your own needs particularly this week, so focus on some time to get some sleep, have a bite to eat, even if its soups, or broths, its calories that are what you need, sometimes for a boost I make porrage and top it with Jam and a bit of milk.

 

Im sure when youve had a good nights sleep, and something to eat you will begin to see all the positives when your child has special needs.

 

JsMumxxxxx

<'>

 

 

[joybed]

Hi sending you lots of <'> <'> <'> I know exactly how you feel. When my 1st boy got his diagnosis it never really hit me we just kind of muddled along and i didn,t consider the future just accepted this was our life. as he got older though and his difficulties became more obvious it really started to get me down and i suffered from depression. Then DS2 was also diagnosed, initially I was very relieved as it had been a struggle to get anyone to acknowledge his problems but then i started to get the why me moods. I really struggled to do anything and function on a day to day basis, my weight went up and I stopped dying my hair wearing make up etc (claiming I didn,t have time for that) which made me even more miserable and I found it hard to see the funny side of anything. I had a lot of sick time and went through a phase of hating work and everyone there, it was horrible. As far as i was concerned the whole world was against me. I don,t know what happened to make me snap out of it, I refused antidepressants again and decided instead to go to the gym and lose weight. I was very cynical that this could work but it did and i am now back to my usual self. Life is still extremely hard and i have times when i think I just want to stay in bed and not face the world at all but i am genuinely more positive.

I think just being a mother you worry about the future for your children but this is made worse when they have a disability. I worry daily what Marcus will do when he leaves school and if he can possibly function in the real world. I worry Piers will get suspended from school for his aggressive behaviour and I also worry he wont make it to the end of one day beacuase of his total lack of awareness of danger. I also worry about the effect of all this madness on Lydia and my DH because he struggles to cope with the boys.

I am fortunate enough to have very supportive friends a number of which have children with ASD and my best friend who is a health visitor and always their with a shoulder to cry on. The boys consultant is also the most wonderful man I have ever met he is supportive and understanding and cares about the whole family, so too are the people at CAMHS and the ASD team. The greatest advice that was given to me was to be kind to yourself and take each day as it comes. Make time to do what you like to do (and I can here you say I have no time but you have to) you have to if you are to survive for your family. Tell someone you trust how you feel they will probably not be shocked. If you have noone you can trust the samaritans are great and make you feel better about yourself. You are on the right track telling us how you feel as i am sure we have all been there. You GP can prescribe counselling and the NAS can give you practicle advice on dealing with your son, I am doing the NAS early bird plus course at the moment and even though I have lived with ASD for the past 9 years I have learnt loads and it is great to talk to others in the same boat. Hope you have better day tomorrow. Take care.

[Kathryn]

Cardiff mum, sending you more <'> <'>.

 

Try and take each day at a time and grab all the supprt you can. Above all be kind to yourself: look after your own needs - sleep deprivation makes everything look ten times worse.

 

K x

 

 

 

 

[cardiff_mum]

ty every1, ur kind words n support really do mean a lot. i am fortunate to have gd family around me but its gd to talk 2 ppl who have been through this, as a parent, because i know u understand wot im feeling right now.

i feel very fortunate to have stumbled across this site and i am so glad i had the courage 2 talk to u guys

ty all xxxxx

[mygifts1306]

Sorry you are feeling this was, here is a little internet hug <'> . I can identify with what you have just said as a mum, yes you do feel like you are grieving for the child you thought you had, you also cant stop worrying about his future, if he will get invited for tea at anyones house. If this is any consolation, My little boy is now 6.5 and have not been invited to any1s for tea. I have tried on numerous occassions to cultivate friendship from him, and out of all my trials I have come out on the other side being synical that ever. In my experience I would say people were just cruel, once they realise that my child was not Nt, they coul not be bothered. Speak to your mum about how you feel, go to your general practitioner and speak to them about how you feel, I cried everyday for months and was nearing a breakdown, I was looking for people to blame and my poor husband got it everytime. Yes it is hard and when your child is not coping you feel for them, but all i can say is that you came to the right place, i wish i found out about this site 3 years ago when my son started exhibiting challenging behaviour, they are all lovely here, almost like a family, as the english expression goes, one good turn deserves another, i do hope by writing to you, you may feel some kind of comfort and find a way to relate with your child all over again, I have not been on for a while, this is because I find it hard writing my feelings down, something so close to me like my children. I do hope you find support in this support, all the ladies and gentlemen here are amazing. When i think all the time i spent trying to speak to parents of NT children, who needless to say do not speak to me now, I could have been speaking to like minded people. Take care of yourself now..

 

Kind regards

Edited November 25, 2009 by mygifts1306

[trekster]

Hello

 

At 1st my reaction was "its not a disability its a challenge to be overcome", then when i got the news that i was 80% disabled i sank into a deep depression.

Now i am fairly stable and accept my autism as part of me. It is natural to be concerned and depressed over your child's welfare that's part of being a parent.

 

It hasn't been easy and ive been through the mill but ive managed to secure a housing association home with 10 hours home support per week. It discourages me from working (can only manage 16 hours on this scheme) but ive managed to work through the issues ive had with the housing association.

Many autistics fall in love, get married and become parents.

 

Could you possibly access the NAS Earlybird or HELP! programmes? I know they both run in Cardiff. Feel free to ask away as the only silly question is the unanswered one. There is a conference on Monday http://www.awares.org/conferences/default.asp which you can watch from your PC.

 

Alexis

 

 

[trekster]

Hi sorry you having a bad time at the moment. I felt like this a week or two ago lasted about 8 days but after coming on here and talking to my mum(who I only talk to every four months cause she is abroad) I felt much better.So I am sure you will feel better soon.I do know what you mean about grieving for the child in a way,I do sometimes feel the same,but I have four boys one is AS the other three not and my eldest (NT) is really intelligent,lovely natured easy going boy and always think he is going to be great and successful whatever he does but we can never tell what this life will bring my Sam (AS) may be even more successful then his older brother.All I ever pray is that I can be there for all my kids whether they have disability or not,to be there when they happy or sad.I will do my best to raise them and hope they will be responsible adults.I dont think I worry much about if he will marry or if he will go to parties,your son is two yrs younger but he has at least been to two parties Sams been to one when he was at nursery!I think I just take each day step by step,I have so many other things to worry about dont have time to think of the future really!I think reading posts from adults on here with a dx of AS and seeing that although they have struggled they seem to be doing alright,nobody's life can be perfect and straightforward all kids will have problems at some point in their lives,all we can do as parents is love and support them as best as we can.I really hope you feel better soon <'> <'> <'>

 

Dont despair the only things im missing at the moment are employment and a permanent job.

[trekster]

Sorry you are feeling this was, here is a little internet hug <'> . I can identify with what you have just said as a mum, yes you do feel like you are grieving for the child you thought you had, you also cant stop worrying about his future, if he will get invited for tea at anyone's house. If this is any consolation, My little boy is now 6.5 and have not been invited to any1s for tea. I have tried on numerous occasions to cultivate friendship from him, and out of all my trials I have come out on the other side being cynical that ever. In my experience I would say people were just cruel, once they realise that my child was not Nt, they could not be bothered. Speak to your mum about how you feel, go to your general practitioner and speak to them about how you feel, I cried everyday for months and was nearing a breakdown, I was looking for people to blame and my poor husband got it every-time. Yes it is hard and when your child is not coping you feel for them, but all i can say is that you came to the right place, i wish i found out about this site 3 years ago when my son started exhibiting challenging behaviour, they are all lovely here, almost like a family, as the English expression goes, one good turn deserves another, i do hope by writing to you, you may feel some kind of comfort and find a way to relate with your child all over again, I have not been on for a while, this is because I find it hard writing my feelings down, something so close to me like my children. I do hope you find support in this support, all the ladies and gentlemen here are amazing. When i think all the time i spent trying to speak to parents of NT children, who needless to say do not speak to me now, I could have been speaking to like minded people. Take care of yourself now..

 

Kind regards

 

Could your son access this service? Sorry i dont know how old he is or where abouts you live. There are also adults social groups in Scotland.

 

Teenscene is a supported youth group service for teenagers with autism spectrum disorders (ASD), aged between 12 and 18 years and living in either East Dunbartonshire or North Ayrshire. It aims to encourage social interaction with peers, promote confidence and introduce young people to activities suitable for their age and interests. Aromatherapy, art therapy and drama therapy are used at specialist sessions.

 

Before young people start at the group, staff visit their home so that they, and their families, can get to know them. The club usually runs on a weekday evening and during school holidays. It is free of charge but parents and carers are asked to cover the cost of meals and activities.

 

We are keen to hear from other local authorities who would like us to offer a similar service in their area.

 

Contact

 

Outreach Team

NAS Scotland

1st Floor, Central Chambers

109 Hope Street

Glasgow G2 6LL

 

Tel: 0141 221 8090

Fax: 0141 221 8118

Email: scotland@nas.org.uk

[Sally44]

Apologies to those who have read this before , but this poem summed it up for me at the time, so you might find it helpful.

 

Having a child with special needs forces you to look further into the future then you would with an NT child. As well as my son (ASD age 8), I have a daugther (NT age 10). I don't think or worry about things in her future in the way I do for my son because I don't feel the need to. She will be old enough and independent with enough skills to manage. With my son it is different. After the diagnosis was particularly bad because I would watch him and think how is he going to manage x, y and z. But our children are remarkable. They do develop and make progress. I believe it is better to concentrate on the here and now and put your energy into giving him the opportunities to improve the skills he has now. That can only lead to more choices later on.

 

I also have a special needs sister. She managed to move out of the parental home into a flat when she was in her 40's, and she used to have carers come in and help her. Now she does it completely independently. We never thought she would be able to do that. But as the years passed, we saw that she might be able to do it, and therefore we decided to give it a go. So never say never.

 

 

Welcome to Holland

 

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

 

 

 

 

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

 

 

 

 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

 

 

 

 

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

 

 

 

 

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

 

 

 

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

 

 

 

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

 

 

 

 

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

 

 

 

 

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

 

 

 

 

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

 

 

 

 

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

Written by Emily Perl Kingsley

 

 

What you are experiencing is normal. However if it continues to be an all consuming depressive mood that continues for some time, so that it begins to affect other areas of your life, then I would go and see the GP. Having depression is common enough for everyday folk. For parents of special needs children the rates are higher. If you need medication for a while take it. You will come out the other side.

[Sallya]

Justine,

Most parents experience similar feelings at first. I know I did. Eventually, you start to realise that autism doesn't have to be a bad thing. He is still your son the same as he was before. I know it feels like you've been hit with a ton of bricks, but it does start to get easier as you adjust.

Aim high for your son, with lots of support. You will work out as you go, what he can and can't do. Sometimes it's a case of doing things a few steps behind his peers, but gets there in the end.

take care

s

x

[trekster]

Justine,

Most parents experience similar feelings at first. I know I did. Eventually, you start to realise that autism doesn't have to be a bad thing. He is still your son the same as he was before. I know it feels like you've been hit with a ton of bricks, but it does start to get easier as you adjust.

Aim high for your son, with lots of support. You will work out as you go, what he can and can't do. Sometimes it's a case of doing things a few steps behind his peers, but gets there in the end.

take care

s

x

 

What a lovely post that i completely agree with.

 

[cardiff_mum]

another bad day and more issues at school grrrrr i have to say tho, the behavioural support team that supply my sons LSA have been brill 2day, they r requesting a emerg meeting with camhs on our behalf.

thank you all so much for you replies, it makes me see things in perspective instead of getting bogged down underneath it all.

i hope every1 is well and have had a better day than me!

thanks again xxx