Acceptance

[Diane]

Hi Everyone,

 

It is good to find a sight like this.

 

I have a 14 year old son who was diagnosed with Aspergers in October 2007. Although there is plenty of evidence to back up his diagnosis I am finding it difficult to come to terms with. Emotionally I am not in a good place about this at the moment. Can anyone tell me how they have managed to be accepting of their childs diagnosis. I want to be ok with this but just don't seem to be able to be.

 

Help!!

 

Diane

[Flora]

Diane

 

Welcome to the forum

 

The answer to your question is TIME. Even though your son is the same son you had prior to the diagnosis it is still a time of huge adjustment and many people go through a grieving process. Nothing has changed really, other than you now have knowledge of a label, but it takes time for that to sink in. You will get there.

 

Flora

[purplehaze]

Hello Diane, I also have a son who is 14 and diagnosed with an autistic spectrum disorder. I always knew something was not quite right. He never passed his hearing tests, in primary I was told he was delayed socially/emotionally. So when we were told I felt releived, finally there was a reason for the behaviour. But, although I had this feeling I still feel confused at times and you ask your self why now and then.

 

It does take time and I do think it is harder the later you find out whether it's what you want or not. The problem with a later DX can be the support you are offered, i'm still trying to get the right support for my son but it is nonexistent.

 

Have you any family support? Also see if you can do a parent info ASD course (like the HELP course). Just keep talking about your feelings and over time you will get through it. How is your son taking it? X

[pearl]

Welcome to the forum Diane

[Diane]

Hello Diane, I also have a son who is 14 and diagnosed with an autistic spectrum disorder. I always knew something was not quite right. He never passed his hearing tests, in primary I was told he was delayed socially/emotionally. So when we were told I felt releived, finally there was a reason for the behaviour. But, although I had this feeling I still feel confused at times and you ask your self why now and then.

 

It does take time and I do think it is harder the later you find out whether it's what you want or not. The problem with a later DX can be the support you are offered, i'm still trying to get the right support for my son but it is nonexistent.

 

Have you any family support? Also see if you can do a parent info ASD course (like the HELP course). Just keep talking about your feelings and over time you will get through it. How is your son taking it? X

 

Hi

 

Thank you for this.

 

Yes I always knew something was not quite as it should be but I always told myself he would understand better when he was older, but of course there are somethings he still has not got the hang of. I always managed his behaviour and got him to where he needed to be or so I thought until he went to secondary school and that is when it all went horribly wrong as I guess it does for so many children with ASD. Since January 2007 we have had the support of a brilliant clinical psychologist CAMHS and more recently inclusive resource. Our time with support from CAMHS is coming to an end although the inclusive resource are supporting us to keep it going so we shall see. If it is withdrawn I know I will not cope just now. If they would just let me find my feet a bit more I know I will be ok. I have a lot of knowledge and have worked with children on the spectrum but this does not help with the emotional journey. I guess I need to work through it as I am sure you have all done or are still doing.

 

My famiy are spread far and wide so no immediate support. I feel very alone with all of this. My son was and still is very angry. as long as we don't talk about it he is ok. He does not want anyone to know that he has it. His school attendance is poor and CAMHS and inclusive resource do a wonderful job of keeping the EWO off my back. School in my opinion are not proactive they set things up (so they say) but expect my son to go to them no amount of telling them to make the first move makes any difference. I really do not think they understand.

 

Just now I feel as if I have let my son down.

[Diane]

Diane

 

Welcome to the forum

 

The answer to your question is TIME. Even though your son is the same son you had prior to the diagnosis it is still a time of huge adjustment and many people go through a grieving process. Nothing has changed really, other than you now have knowledge of a label, but it takes time for that to sink in. You will get there.

 

Flora

 

Hi Flora

 

Thank you.

 

I guess what has changed for me is I always thought that if I gave him the right suppport he would grow out of his problems. The diagnosis means it is for life and he will always have dificulties in certain situations. I guess non of us want this for our children. He is still the same person and I love him just as dearly. For now it hurts. Like you say time is probably the answer.

[bid]

Welcome to the forum, Diane

 

My son is 19, diagnosed when he was 7. Flora is quite right in that the answer about 'acceptance' is time <'>

 

I am an adult with a dx of AS myself, and can I just reassure you that I live a 'normal' life: I'm married with 4 kids and I work full-time. It's taken me longer to get where I am than if I'd been NT, but that doesn't really matter...

 

Bid

[oxgirl]

Try not to be so hard on yourself, Diane, you haven't let your lad down, not at all. My lad is also 14 and I have had ten years to get used to the dx, it is never easy at first, you go through all sorts of conflicting emotions. Do you have a support group near you where you could meet other parents and exchange information and gain support? It is especially important just after a dx, I feel, as this is when you are most raw and need to talk to others. It's good that you have found this place, you will get a lot of support here. Just know that there are many here who understand how you are feeling. It must be difficult for your lad to accept the news as well, especially at 14, which is not an easy time anyway. My lad has known about his dx since he was 6/7 but, at the moment, he is particularly unhappy about it and I think it will take time for them to accept themselves for the people they are. <'>

 

~ Mel ~

[NickyB]

Hello, Diane and welcome

 

My 5 year old son has a dx of high functioning Autism. Although he's a lot younger than your son, I can relate to your feelings.

As the others have said, it's a lot to do with time - it's a big thing to accept.

I've had lots of times when I've thought 'why us', but now I've come to realise that he just has a different way of looking at the world than most of us (and there's certainly nothing wrong with that )

All of our kids are amazing, although it's hard to remember that when things are tough.

 

Sending you lots of these <'> : <'> <'>

[baddad]

Hi diane - welcome to the forum

[Kathryn]

Welcome Diane,

 

K x

[Cat]

Hi Diane

 

And Welcome

 

My son was 13 when he was diagnosed with AS six weeks after his 3 year old brother. It was quite something having two of them diagnosed within six weeks of each other, given that I had been raising concerns about my elder son for 10 years. I was very fortunate because my son had already had a complete breakdown after transferring to secondary school (that of course was not fortunate) and the diagnosis answered many questions for him and of course us. While he did not physically embrace the diagnosis he did accept it and that certainly made the load easier for us to bear at that point. That said the teenage years can be very difficult and they were for us. Our son was verbally and at times physically aggressive and apart from a 6 monthly appointment with CAMHS we have never had any input or support. We turned a corner just after our son had his 16th Birthday. His aggression levels subsided and he became more like the boy I used to know. He is now 21 and a smashing guy ? most of the time - but he still prefers not to talk about his condition most of the time. His stance is that he has to live with it so he does not need to talk about it.

 

I think that I accepted the diagnosis because it basically proved that I had not been being an over protective Mother for ten years ? something that I got sick and tired of hearing. If accepting the diagnosis has not been easy for you then it surely must be just as difficult if not even more so for your son. I always likened it to a child finding out aged 13 that they had been adopted when they were a baby and no one had told them until that point. It truly must be a mind blowing experience. Maybe your son needs more time to get his own head around this and to find himself. I would probably stop talking to him about the diagnosis at the moment and wait until he asked me some questions. You might have a long wait but I would sit tight for a while and give him some space to get his head around himself. This might not be what the experts would advise but then I do not always go with the flow.

 

We took our son out of school and home educated him which turned out to be the best thing for him. It allowed him the space he needed and took the pressure off him trying to be like everyone else when he clearly was not.

 

Everyone takes a diagnosis differently. I think that my sons have many qualities which the whole of humanity could do well with taking on board. Their autism does not worry me or upset me. It is part of who they are and I love every bit of them just the way they are. What I do worry about is how they are going to cope in a mainstream society where anything which is not considered to be ?normal? is unacceptable. If I could change one thing for my sons it would be to make them acceptable as who they are and not what people say they have to be.

 

Cat

[lynne]

Hi Diane,

 

You should pat yourself on the back for managing your sons through junior school.

 

Alot of our students struggle through junior school, than they transfer to secondary school and it all falls apart. You have not failed your son, you are learning to support your son in a different way.

 

I have a friend who use to be an educational psychologist and even she did not manage to get her son diagnosed until he was just about to move to senior school. So even if you know about these conditons and work with them it does not mean you will manage any better than someone who does not know what ASD is.

 

Parenting is one of the most difficult jobs we have to do. Yet we have no training or degrees to get there. However, parenting a child with special needs is even more difficult. sometimes is just a case of getting through the day.

 

After time and guidance you will be more supportive for your child. You will even look on the funny side and laugh.

 

Teenages are difficult and so too are ASD teenagers. Its normal for a child not to want people to be told he is difference but after a while your child will feel difference.

 

My son is 11 years old (diagnosed at 5 years) at first he hated when I told teachers etc that he had ASD. Now he is very honest and open. He is proud of who he is. And I am proud of him.

 

Cry when you need to cry, shout when you need to shout and laugh when you can.

 

Our children can turn out to be wonderful people.

Edited July 29, 2008 by lynne

[Diane]

Thank you all of you who have responded.

I have taken all the positive things that have been posted and taken them onboard. I feel I need a little time for reflection.

I know I will visit this site on a regular basis. Knowing that their is a whole community of people out there willing to share and support is a wonderful relief.

 

Thank you once again.

[JsMum]

Hi Diane

 

First a warm welcome, and pleased you have joined the forum, I personally feel that when A parent learns they have a child with Special needs the parent should be entitled to some councilling, or family therapies, because it is soo emotionally draining, there is soo much to do to help your child to be able to cope and succeed, it sounds like you have a very good camhs and clinical psychologist, so I understand its very comforting and a need to keep them there to help you further, I have had councilling privately, though on the waiting list from Nhs, but I needed something now, its tailaired off a bit now, due to severe difficulties with education, and so accessing services for my needs is more difficult as I dont have the time, now its the holidays, it is even more harder with a 24-7 timetable, but for me learning about the particular difficulties J has led me into books and websites that gave me a wider understanding and I began to use stratagies that other parents used with their children and it helped more than the conventional methods, normal parenting techneeks didnt work for my son, so I had to change them to suit J and things began to work, and things improved though its never easier, you understand more and adapt to the family needs.

 

For me I recieve a lot of help from contact a family, youngminds, and other charities, for education there is ACE and IPSEA but there is a whole list of more advice websites in the education toolkit.

 

It sounds like you have really been a real roller coaster of a journey, especially more so when children are older when someone says its a specail needs and for years that means they went without the right support and help, in research I have read, for some parents who have been given a diagnosis its like a grieving process, and similair emotions and feelings are felt, though I know we are not talking about somone dying, its said that its similair psychological process.

 

Many parents dont get a diagnosis at all, many children, adolesents are growing up undiagnosed into adulthood, so its a major step getting a diagnosis, it means from now on you now know what is going on, and throw research and long nights reading books you can begin to understand and with that comes exceptance and a new insight, it never gets easyer, but we can learn to understand and take one day at a time.

 

JsMum

Edited July 29, 2008 by JsMum

[joybed]

Hi Diane my son is 12 and was diagnosed with ASD at 5 we had been working so hard to get him diagnosed as I knew but everyone else refused to diagnosed that i felt relief and immediately accepted it. I than found it really hard to come terms with when he was about 9 as it suddenly hit me that he was so different to his peers and suddenly became much worse as i had had twins the year before. This was a very rough time as i also had postnatal depression at the time and was struggling to cope with 2 babies a child with ASD and a full time job. Thankfully i came out the other end and am almost back to my old self although the many different hats do get hard to wear at times. Everyday brings new challenges and for all the chaos in my house i wouldn,t have it any other way.

[JsMum]

Everyday brings new challenges and for all the chaos in my house i wouldn,t have it any other way.

Joybed

 

I agree to that.

<'>

 

JsMum

[Nic m]

Heh, Diane,

 

I think there is no hard and fast rule to how long it takes.

I knew before my daughter was diagnosed (for a long time) and i still took a while to finally accept it.

 

This forum was a godsend when i was really struggling, hope you find it just as useful.

 

N x

[Karen A]

Hi Diane Welcome to the Forum. Karen.

[forbsay]

Hi

 

It does take time.

 

My son was diagnosed when he was 2.5 years old and he is now 8. It took me a long time to come to terms with his diagnosis but I have got there.

 

I now focus on all the things he can do.

 

You are not alone.

 

Take care

 

Forbsay

[darky]

Hi there <'> it took me errm over 3 years to fully accept the diagnosis with my daughter. If the truth be known I could not accept the paper box ticking diagnosis with all the physical problems she has. There were a few things that helped, first of all getting to know other parents and children with ASD. No two are the same, but seeing the charactoristics in others helped if that makes sense. Just recently I met with someone who's son was uncannily like my daughter. It helps to talk to others about experiences and eventually it helps things to slot into place.

 

The other thing that helped was a fantastic consultant who understood so much. We had some tests that ruled out things like fragile x, and then it was a case of gradually accepting it, and instead of mourning the label, we celebrate the differences, and actually I am glad things are the way they are.

 

Of course it is different for everyone, but you will get there. <'>

[Diane]

I guess I will eventually accept that this is the way life is meant to be for us as you have all been able to do.

 

Diane

 

OMG Diane I'm so sorry, I meant to reply to your post and had clicked the edit button my mistake (I'm still getting used to these extra buttons the mod's have. Gosh. really really really sorry. You had posted a lovely reply to everyone too. What a blunder

 

Not only will you eventually accept it Diane, but you'll start to enjoy it and eventually forget that things aren't as you planned... ie.. it will become the norm for you, different but 'normal' . I've often discovered that outsiders to my life have perceived us as 'living under sufference', when in fact to me this is our life, and I can't imagine it, nor do I want it, to be any different. Yes, there are reminders that things are different to families who don't live with ASD, but different does not mean to me that we are missing out, or that we have lost anything. Eventually you will feel the same, you've just got to ride out this difficult phase, which as I said previously, is very much a grieving process.

 

Flora <'>

Edited July 31, 2008 by Flora

[purplehaze]

Hi

 

Thank you for this.

 

Yes I always knew something was not quite as it should be but I always told myself he would understand better when he was older, but of course there are somethings he still has not got the hang of. I always managed his behaviour and got him to where he needed to be or so I thought until he went to secondary school and that is when it all went horribly wrong as I guess it does for so many children with ASD. Since January 2007 we have had the support of a brilliant clinical psychologist CAMHS and more recently inclusive resource. Our time with support from CAMHS is coming to an end although the inclusive resource are supporting us to keep it going so we shall see. If it is withdrawn I know I will not cope just now. If they would just let me find my feet a bit more I know I will be ok. I have a lot of knowledge and have worked with children on the spectrum but this does not help with the emotional journey. I guess I need to work through it as I am sure you have all done or are still doing.

 

My famiy are spread far and wide so no immediate support. I feel very alone with all of this. My son was and still is very angry. as long as we don't talk about it he is ok. He does not want anyone to know that he has it. His school attendance is poor and CAMHS and inclusive resource do a wonderful job of keeping the EWO off my back. School in my opinion are not proactive they set things up (so they say) but expect my son to go to them no amount of telling them to make the first move makes any difference. I really do not think they understand.

 

Just now I feel as if I have let my son down.

 

I think I know how you are feeling, my son hates anyone knowing because alot of children in his school just do not understand. He has had people calling him emotionless (mainly girls), weird etc and all he wants is to fit in with them. My son has a statement and all the school tell me is it isn't working because my son doesn't except the support he is given. I agree that a lot of schools or teachers may not understand the behaviour etc. I also have a lot of knowledge like you and work with children who have ASD or other SEN and believe me it doesn't always help and can hinder things, although it can help with school at times because I know more than them and tell them what they need to do to make things work.

 

Just keep talking to us and we will support you X

[fallgyrl]

Hi Diane and welcome. As others have said, it can take a while for it all to sink in. We first went down DX process over 3 years ago when J was 3 but agreed to hang fire a bit when J started school given that some of his problems seemed to have settled down. I suppose I hoped he would 'grow out of it' but of course he hasnt Now back down the DX path, no confirmation as yet but we just know that its Aspergers. Funny thing is, this realisation feels like a weight has been lifted off our family - I no longer beat myself up for being a 'bad mum' who cant control her kid. With more knowledge comes a much greater understanding of Js needs and just why he does what he does - sure sometimes there is no excuse for some bad behaviour but at least I seem to be able to deal with it without stessing out and thats best for J as well.

Hope you get to feel positive soon

 

Vicky

[Diane]

I think I know how you are feeling, my son hates anyone knowing because alot of children in his school just do not understand. He has had people calling him emotionless (mainly girls), weird etc and all he wants is to fit in with them. My son has a statement and all the school tell me is it isn't working because my son doesn't except the support he is given. I agree that a lot of schools or teachers may not understand the behaviour etc. I also have a lot of knowledge like you and work with children who have ASD or other SEN and believe me it doesn't always help and can hinder things, although it can help with school at times because I know more than them and tell them what they need to do to make things work.

 

Just keep talking to us and we will support you X

 

Hi

 

Thank you for the recognition that working with children who have ASD or other SEN can hinder things. You are right it can help with school.Unfortunately my sons school sets things up and expect him to go to them, I still have not got through to them that they have to take it to him for it to work if that makes sense. He is unable to attend school full time due to his anxiety levels. I feel fortunate that the inclusive resource have set up a mechanics apprenticeship for him starting in September but even this was a battle to get school to agree and it will be an on-going one. I am in a catch 22 situation with it as it can only happen if he attends school. That is a whole other story. Yes a big problem is that the kids in his school do not understand. Sorry I'm in tears. How can something so simple be so difficult for people to understand.

[Diane]

Hi Everyone

 

I just want to say thank you to you all for your support and sharing your own personal experiences and feelings with me. I feel that I have friends and an understanding from you all that I have not had before. I feel somewhat over whelmed by it at the moment. You are all very special people and if I had time I would reply to you all individually.

 

So just to say thank you once again and love to you all.

[Diane]

OMG Diane I'm so sorry, I meant to reply to your post and had clicked the edit button my mistake (I'm still getting used to these extra buttons the mod's have. Gosh. really really really sorry. You had posted a lovely reply to everyone too. What a blunder

 

Not only will you eventually accept it Diane, but you'll start to enjoy it and eventually forget that things aren't as you planned... ie.. it will become the norm for you, different but 'normal' . I've often discovered that outsiders to my life have perceived us as 'living under sufference', when in fact to me this is our life, and I can't imagine it, nor do I want it, to be any different. Yes, there are reminders that things are different to families who don't live with ASD, but different does not mean to me that we are missing out, or that we have lost anything. Eventually you will feel the same, you've just got to ride out this difficult phase, which as I said previously, is very much a grieving process.

 

Flora <'>

 

Hi Flora

 

With regard to other people, I am finding that they become very cool towards us when they realise we have a child with ASD. I guess you could say they are shallow and not worth the effort. We were judged when we did not have a diagnosis and now we do we are still greeted with indifference. Like you say we are not missing out and still like to do what other families do. We celebrate the small steps that our son makes. My most recent was the fact that when i got home from work the other day he wanted to show me what he had been doing. This was a first he never shares his achievements with us. He had spent the day making play-doh on his own (we had done this together the previous day). I was over the moon that he had wanted to show me and look forward to him doing this again. What I will do with the rainbow colours of play-doh I do not know. For now I will enjoy looking at them and what celebrate its meaning.

[cmuir]

Hi

 

It took me several years to eventually get a diagnosis for my son. Took a couple of years to even get my GP and HV to agree to a referral, we were passed from pillar to post and saw a lot of people over a few years, before finally getting that diagnosis. I remember becoming almost almost obsessive with finding an answer as to why my son behaved the way he did/does and get help for Robert and to cope basically. I couldn't think about anything else and can remember painfully only too well sitting on the floor bawling my eyes out thinking how am I going to get through the day let alone weeks, months and years. I also wanted recognition that I wasn't a bad parent, that I could cope and that I wasn't neurotic, etc. When I had the appointment with the consultant who finally diagnosed my son, I remember being petrified that she was going to say she didn't know what was wrong with him and I'd be back at square one. When she broke the news, I cried uncontrollably - poor woman apologised profusely and handed me a box of tissues. When I was finally able to compose myself, I told her that I was crying out of sheer relief. Might sound crazy, but in my heart and my head, I already knew what was wrong. I recall coming out of her office and phoning everyone I could think of. Must confess that my GP and HV were right at the top of the list - I wanted to ensure they wouldn't be so dismissive or someone else in the same situation should that arise. I felt almost euphoric (and vindicated!), but more importantly, I received confirmation that my poor boy couldn't help his behaviour, etc and that he'd (up until that point) been failed because his difficulties had on the whole not been recognised. On the day of the diagnosis being confirmed, whilst I knew that some doors would open, I was very much aware that whilst I'd overcome a very big hurdle, there were lots of others waiting. I also recall having a splitting migraine that evening too!!!

 

In honesty, I know some have experienced a feeling of grief, but I never have. As soon as I received confirmation, I accepted that R has AS - I think because I already knew. But, I must confess to having wondered 'why R and not someone else?' and also feeling envious of other famililies who can be 'normal'/don't have difficulties/problems associated with a child having an ASD. On a more positive note, this really gave me something to focus on and I find I'm constantly looking at different strategies to try and help R. In addition, I've discovered what a truly fascinating little boy he is - he was some wonderful qualities as well as some odd traits but that's what makes him who he is.

 

Whilst I didn't advertise the fact that R has AS, I was selective about who I told. I do feel some people think that when you tell them that your child has AS, they think you view that as an excuse for their bad behaviour ? in fact, it's not like that at all - it's actually a REASON, not an excuse. It's then about other people showing compassion, a bit of tolerance and understanding and that's what makes the world of difference, rather than people being hurtful, judgemental, patronising, etc.

 

Everyone copes differently, but I think it takes a bit of time to get over the rollercoaster of events and emotions (it's very easy to run out of steam - so take a bit of time and recharge your batteries), because it generally it takes such a long time to get a diagnosis. I remember finding this forum just after my son was diagnosed and I was truly grateful for it!

 

Give yourself a massive pat on the back - you've undoubtedly been through a lot and you've survived to tell the tale. I always think that there are some people who are 'dealt a bad hand' so to speak, but it makes them much stronger people for it - a lot of those people are on this forum!

 

Take care.

 

Caroline.

Edited August 1, 2008 by cmuir

[SuzyQ]

Hi Dianne,

 

I am new to this site and by the sounds of it very lucky, I have a 14 year old daughter who at 8 was diagnosed with a gender identity disorder, it was hard then, but as she has grown she wanted to conform to society to go into secondary school, she struggled and ended up with a naughty child label, I spent alot of time driving to school for meetings with heads of year, or worse still the ones with the headmaster (my old history teacher ).

Luckily..or not they have a special naughty child unit...who took her on, here she met all kinds of children you wouldn't want your child to meet!!!! And has gotten herself into some serious trouble. On the good side the manager of the unit could see she wasn't naughty but had some communication problems, and suggested Aspergers...the first time I had heard of it. She wasn't functioning in school at all by the beginning of October so to the Dr's we went, who asked her to keep a Diary....ha...I had to force her to the Dr..was she going to keep a Diary..like hell was she ..she hated me for ages for this, but eventually I asked my dr to refer to CAMHS and even though she was extremly reluctant I pushed, I also applied for the statementing to happen with the schools back up and during the consultation with the dr for this we have been given the Aspergers diagnosis. So we have been lucky it has only been a few months, but in that time I have married, been on holiday, lost two of my dogs and moved house to a completely unknown area for my daughter.....things at home are awful most days.....

The thing that keeps me going is knowing that for A it will help her once she comes to terms with it...she is not accepting at all and we cant discuss it she will not show emotion and when she is violent she is 5' 9 and a force to be reckoned with!

My work are not supportive at all, she rearely attends school even though she is desperate to learn they can't cope with her, my family think she will wake up one day and not have aspergers.....So I know how tuff it is, I wonder if its something I done wrong, I long to see my little girl, we see her on her good days.

 

Its a rollercoaster ride no one wants to be on, but we have to...this site gives me hope and helps me realise we are all on the ride together not alone.

Suzy <'> <'>