When does it get better?

[shamu]

Self indulgent thread - sorry.....

 

Not really coping v well at the moment I thought that by now (six months post "official" diagnosis) I'd be finding things on a more even keel, but I'm finding it harder than ever to cope. I just feel so sad for my little boy and (selfishly) for myself, my DH and my daughter. I am over aware of how "different" we are as a family and how far removed it is from what I was expecting and I can't see a way it will ever get better. I keep wishing I could go back in time to a year ago when all seemed "normal" and we weren't concerned about DS and cherish that time because it seems so so hard at the moment. I know some of this is because we have moved and I'm settling in to a new house and new area but I feel completely isolated and don't know how I can get out there and make new friends etc. DS is now constantly stimming so it's hard to go to toddler groups (especially as I have my one year old DD who needs a lot of attention too). DH leaves home earlier and gets back later so I'm on my own for a longer chunk of the day too. I just spend most of the day upset as I see DS regressing/plateauing at a time when all his peers are taking massive leaps forward. I know I can't change him or his diagnosis and I wouldn't want to, I just need to find a way of accepting him and all this....

 

Did anyone else take a long time to come to terms with things?

 

Shamu

[Deedee]

Hi Shamu although I've accepted M's dx I don't honestly think I'll ever actually come to terms with it..I just seem to cope better on some days rather than others IYKWIM? I think as our kids get older and we get more used to their little ways it does get easier in some ways.I now know (vaguely!) what sets M off,what situations to avoid,where not to go,when not to speak to him etc etc..M is 8 and it really struck a chord with me what you are feeling and how I feel as I also see his peers growing up.I always try to look for the positive in things although at times its soooo hard to find one but my positive thought about the peer group is my special son is still so innocent and unspoiled by life in general,he doesn't get involved in all this peer pressure stuff.He's just happy chugging along and being himself,my little enigma Things WILL improve hun I hope you find some lovely new friends in time I'm sure you will <'> Dee X

[mossgrove]

Apologies to those of you who have seen this before but I think it is worth posting again. It is called '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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

 

So you must go out and buy new guide books. 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....and 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."

 

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

 

One other thing that has helped us a lot is finding a local support group. There is the practical side of supoort but the most important thing is the opportunity to speak to people who understand. I would also strongly recommend that you speak to the National Autistic Society to see if there is a Help! course coming up in your area, they are well worth attending.

 

Simon

[KarenT]

I definitely agree with joining a support group. Mine meets monthly and I've never missed it in the last two years, couldn't cope without it, it's incredibly supportive to be among other parents who are living the same kind of life that I am because otherwise I'd have nobody in real life I could offload to. It's also a great source of information and advice as you progress through different stages - there's always someone who's 'been there, done that' and can give some tips.

 

As for when does it get better, I'm not sure it does, tbh. The underlying problems are always there but the management of them changes, you go through phases when your child copes better than others, and actually I found the post-dx stage the hardest because we were continually trying out new strategies and consequently making loads of mistakes, which unsettled things further than ever. That period of adjustment was pretty awful for all of us. Now that we've established some things that do work I find it a bit easier, but it's always a struggle and the bubble could burst at any time - it's up to me to keep my eye on the ball and watch out for things potentially going wrong. IMO acceptance is the key - your child will always be different, always have difficulties and will always need your support. What will change will be the type and amount of support you'll have to give but there will always be problems. Once that slots in to place it does get better, but that's more a state of mind - a coping strategy - than the actual problems lightening.

 

Chin up, it's early days yet for you but you'll get there. There's loads of good support on this forum so you certainly won't be alone!

 

Karen

x

[baddad]

Hi shamu -

6 months is no time at all to get your head around everything that the dx raises questions about, especially if you have had all of those other scary upheavels to contend with, like the house move and changing work and social routines.

It's not selfish to feel the things you are feeling; to worry about yourself and the rest of your family too. Having a child with AS effects everyone in the family, and while that's a huge thing for your son it doesn't mean that your own, or your partner's or his sister's transitions are any less traumatic or valid; you all have your lives, and your needs and your perspectives too.

The 'Welcome To Holland' piece Mossgrove posted emphasises a very important aspect of the transition you are going through - It is Not What You Anticipated. That's not judgemental, and it doesn't devalue what is in any way shape or form. Some "unexpected's" are quite literally life changing, others are just small 'blip's that are consolidated with hardly any fuss at all. I think a dx of AS is a bit of a 'butterfly effect' - the ripples of disturbance spread out in all sorts of directions, some tiny,making hardly any difference at all and some far reaching with huge consequences, good and bad, joyful and heartbreaking.... Sorry, I'm waffling!

As far as that isolation thing goes it is an enormous barrier. Finding people who are experiencing/have experienced or can empathise with that barrier will help massively. so a local support group is a really good idea. This type of online community can be a great help too

Playgroups and stuff are difficult, especially if you are going in 'cold', but chances are if you can get through the first couple of sessions it'll start to get better, and if you avoid the 'clique' groups that seem to have their own rules of entry you'll probably find other people on the peripheries who are far more interested in you than the social models those 'cliques' tend to wear as membership badges.

 

Very best, and hope you get some good 'ripple's' to ride on soon

 

L&P

 

BD (who waffles! )

[Mumble]

Mossgrove - that's beautiful - normally I don't get/like such 'analogy' writing, but something in that made a lot of sense to me.

 

Shamu - I cannot understand what it is like for you from you side, but I can try to understand it from my side and think about how the way I'm experiencing things might reflect some of the ways you are experiencing things at the moment. I was diagnosed as an adult (AS, dyspraxia, alexithymia) 4 months ago. I thought, completely wrongly, that the diagnosis would be the end of the pathway and that everything would be better from then on in. It seemed such a struggle to actually get the diagnosis that I kept myself going in thinking that this would be the final fight; a diagnosis, I believed would give me the understanding of some differences and then I'd have the answers and everything would be 'normal' again.

 

Of course this isn't the way it is, or the way it can logically be. The diagnosis is the beginning, the run-up and preparation for a diagnosis mearly the warm-up. You and I are running different races to the ones we expected (the hurdles rather than a sprint), but there is still somewhere to go and you can now begin the right journey because you know where you are starting from. Even NTs don't have a life course planned out for them - we just assume they know where they're going but I think this is probably not the case.

 

What will happen is that you will gradually notice positive things that he does differently; Deedee makes some very important points - not sucumbing to peer pressure, not lying etc. - these are all things we would value in someone and they are aspects your son will have as innate qualities. This doesn't mean things won't be hard - if course they will and there will be battles and fights and times when you just want to give up. But when it goes well, when you see what a special contribution your son can make, with your support, the hard work will be worth it.

 

As to watching his peers, humans are naturally programmed to compare at all opportunities; indeed, society is driven on stratification and social placement and this is obvious in the way we divide people and group people both in practice and in the divisions we create in our heads. It's very easy for me to make a me/them comparison or for you to see your son as different from every other child. However, if we look a bit closer, we start to appreciate the errors in this: yes, maybe on one variable he is 'lower' but on many others he will be 'higher' and we have to look holistically if we are to appreciate the strengths that everyone can bring. I worry constantly that I will never 'make it'; I compare myself to what is immediately visible in other students - their verbal and social skills. However to do this removes any comparison of the things I can do; I understand the mathematics most people won't even look at because it seems to be a different language, totally incomprehensible to them, I can write and write well and I have to think about my achievements based on this. We all have weaknesses we need to work on; else there would be little point in education - it's just that some are more obvious than others and not enough people take the time to stop and examine what is really happening.

 

You will have a fight on your hands; get support for the difficult days, be it from forums like this, NAS courses or other parents, but enjoy the days and experiences you will also have that you may not have had if you had 'gone to Italy'. Your son will become you best teacher as much as you will become his.

 

I do hope everything works out well for you.

 

Mumble

[Ohforaquietlife]

Hi Shamu

 

All we parents of a child that is 'different' know exactly how you feel. Although I felt a sense of relief to some extent when my son got his dx at 3 (because it proved my suspicions correct and meant I could no longer be labelled myself as just an 'over-anxious mummy', ) it was also the start of the long process of 'mourning' for the child you hoped you'd have and the easy life that would go with them Ha Ha!

Six months is still very early days to be getting your head round the alternative route we are all taking. There are no shortcuts through the process but nor should there be. It takes time to work through each of the stages; grief, anger, why us? etc. but you will come out of the other side on to the path to acceptance although even then, at intervals, often when you least expect it, the difference will hit home and you'll probably need a good cry before you pick yourself up and battle on again. It's a fact that life isn't always comfortable with a child on the spectrum and you will probably find yourself comparing your lot unfavourably with your peers with NT children at times but in general, things will get better. Perhaps your child may always have difficulties but your ability to anticipate, avoid or cope with them will improve as you learn how he functions, what his triggers are, how best to communicate with him and so on. And the biggest help will be building a network of friends who can really appreciate what you go through on a daily basis.

You don't say how old your son is. If he is pre-school age, now that he has a dx you should be able to access a place in a special-needs nursery if there is one in your area. You may not like the sound of that but it can be invaluable in helping your son to learn to communicate and learn all manner of skills that would be difficult or stressful for him in a mainstream setting. All the children will have difficulties of one kind or another so he would not be singled out; especially by the other parents. Mainstream playgroups can be a nightmare for the reasons others have described but I must say that my son, for all his apparent differences, was a lot better behaved than the vast majority of the NTs whose mothers tutted when L spoke at the wrong time or got in one of their precious's way It can also be a starting place for some long-lasting friendships. L happened to start nursery with a whirlwind called Ben who, unfortunately for me turned out to be 'son of Baddad' and I haven't been able to shake him off since! Only joking, we've been great mates for 7 years now and have helped each other through some really tough times, edited each others letters to the LEA and moaned on the phone for many hours. <'>

Six months after diagnosis is also a good time to join an NAS 'EarlyBird' course if they run them near you. Loads of useful information and strategies and new friends. My group still meets about once a month for coffee 6 years after we completed the course!

I guess what I'm trying to say is that you can get very depressed just staying at home and it is really important to get out - but perhaps not to places that are going to make you feel worse about your situation. You need the likes of us 'virtual' friends on here but you also badly need new 'real' ones to help you keep going.

My son's 10 now and most days it's not so bad. He has enormous difficulties with communication in particular but as a family we just accept him for the lovely little chap that he undoubtably is. His sister's have never known anything different and get on with him great - on his terms of course!

Get on to your health visitor or social worker and get them to help you to find your niche!

 

<'>

 

Ohf!

[cmuir]

Hi

 

I think the whole acceptance thing comes in peaks and troughs. I've came to the realisation that this is never going to go away. I get upset when you see parents shouting and bawling at their kids for no obvious reason (NT kids) and I do wish that Robert was 'normal'. He has a lovely personality, but there's no doubt he has difficulties and if I were asked, yes if I could wave a magic wand for Robert not to have AS, I would. I love him dearly, but there's no doubt he has significant difficulties directly related to having AS. I also feel that we're prevented from doing lots of things because we know Robert wouldn't cope (we have/do try!). What brings me through these bad spells is when I see all the things that Robert has learnt to do. I think back on how much he's progressed and learnt from other 'normal' kids. He's a happy little fella and I know he's oblivious to this. Try and focus on the positive things. I think most of the time I'm consumed in trying to get Robert the help and support that he needs and in general looking after him. Another positive thing to consider is that I find people with an ASD fascinating. It can be good to be different - look at Einstein, Mozart, Bill Gates, etc. I think in general it does get easier in time. I've noticed a massive difference in Robert over 3 years. Whilst it's true to say that with age and maturity kids learn, some traits disappear and other surface. Age, maturity and understanding are definitely a plus. I also think with lots of support ie visual timetables, social stories also help massively.

 

Try and take every day as it comes. Don't look too far ahead.

 

Best wishes

 

Caroline

[Lynden]

Hi K

 

We were lucky in that Logan was diagnosed so young, and we knew even before then, but I still struggle with certain aspects. Being in a new place is extremely hard, and I find myself having to explain that he is autistic many times whereas at 'home' everyone already knew and expected him to be a little different. Its hard getting out and about, because there are so many places that you just can't take them.

 

I also feel sad that we never often have 'family' days out, its always one of us taking Leona out, or then if family is visiting we both take Leona out. I think I get envious sometimes of other peoples normality - but then I see my friends girls arguing and bickering and dont feel envious at all! LOL

 

I think at the moment things iwll be harder for you because you are out of your own comfort zone having just moved, and everything will seem exaggerated for everyone. I think its normal to feel 'flat' once you've gone through somethign really stressful like a house move too - you are so busy before hand you dont get time to think.

 

Lynne x

[JsMum]

It Doesn't is what I want to say, but really some things that J has problems with have got worse, but then other things have defanitly got better, and not really any year has been any easier than any other particular year.

 

I would say I can deal with things more because I understand the problems J has more,

 

I can try and do things in a certain way, when he was younger I didnt do things right but I would of if I had of known back then what was the problems,

 

Its hard working with a child when your thinking he is an NT toddler only to find out further down that he actually has a lot of difficulties.

 

I think its great we have the internet to find information and support, 20 years ago that wasnt here so parents must of had to go a long time before finding any information.

 

I was been flippant when I say it doesnt get any easier, some days I do feel like that, but in small ways they do get better and when they do you appriciate those moments more.

 

JsMum

Edited June 12, 2007 by JsMum

[oxgirl]

Shamu, give yourself time, it hasn't been that long since dx and it can take a while for it to sink in and hit home. You will start to feel better and you will feel stronger, don't be so hard on yourself. <'>

Maybe you could give the toddler group a try. Even if your lad does stim, he still has a right to be there and so do you. You could find, if you go along, that there might be other parents there in a similar if not identical position, you might find there are people there to start to get to know and build friendships with and it would be a shame to miss out on that. Once you've been a few times I'm sure you'll start to find people to talk to and it might do you the world of good.

In the meantime, be patient with yourself and try not to judge yourself so harshly. Acceptance and peace of mind will come with time.

Take care. <'>

 

~ Mel ~

[shamu]

Thank you all for taking the time to reply to me <'> It means a lot to "chat" to others who have been through this.

I will definitely make the effort to go to the local NAS branch - they meet every week and it will be nice to meet others who have been through all this before. I also made contact with HomeStart and they have managed to find a volunteer to spend a few hours with me once a week from next week - will make trips out during the week a bit easier. I will see if the local SS have received the referral from my previous borough yet - I don't hold out much hope! I need to register with the GP so that we can get hooked in to the health visiting service - though my last HV didn't even contact me after she her referred us to the CDC

We are doing an EarlyBird course at the moment which is quite useful. That said, because of my work background (I'm a community paed - how ironic ) a lot of the early stuff is things I already know and that we're already doing. But it is good to meet other parents in a similar position.

Lynne, you're probably right about the "down" post move. I do feel quite deflated now I'm not expending energy chasing solicitors/esate agents etc! The space is wonderful though.

I know that with time it will get easier to cope, I was just expecting to feel better a lot sooner. Guess I'll have to get my GP to sign me off work for a fair bit longer as there's no way I'm ready to do my job feeling like this

I'll let you know how things go!

Shamu

[Kathryn]

Shamu,

 

<'> <'>

 

It's tough coping with just a move on its own, without adding in other things as well. And 6 months isn't that long to come to terms with a dx - I still struggle at times 3 years later. Things will get easier, but it takes time.

 

I hope searching for support groups bears fruit and you find just one or two people you can really connect with.

 

And when real life is the pits, we're always here as well!

 

K x

[Bagpuss]

Hi Shamu,

 

I'd agree with alot of what has already been suggested. Give yourself time and be kind to yourself. I find that some days/weeks I seem to deal with it better than others. Peaks and troughs. Sometimes I feel totally overwhelmed, others I feel I can ride the storm.........things that I've found helpful are this forum, going to local support groups, getting involved in courses which we have been offered, opening up to family and friends about how I REALLY feel, trying to live day to day and not dwell too much on the future, trying to make time for ourselves as a couple, reading books and trying to gain what information I could.

 

You will find what works for you and your family, and what doesn't. What brings you comfort, and what doesn't I'm unsure if any kind of acceptance comes, maybe for some it does....for me, still don't know. Someone sent me the Holland story when my youngest dd was dx with MD. It helped me. I can only describe my emotions at the time as totally grief stricken. I actually felt like someone had died, and I howled and sobbed till I physically just couldn't shed one more tear.

 

I found a particular book really helped at my lowest points. Changed By A Child, by Barbara Gill. Hugely inspiring.

 

Take care <'>

[tess]

hi shamu

i agree with lots that has been said,post diagnosis is a lonely place, thats why i have set up my own website and service so please feel free to visit,

****

if you need to talk you contact me

 

cheers

tess

 

Hi - Tess

We are sorry, but the forum rules do not permit direct links to commercial services. After full consideration it was felt that the service you are offering falls within that category. Any members interested in more information are free to contact you via the PM system.

We trust you will appreciate the reasons for this edit to comply with forum guidelines, and that it in no way implies comment, positive or negative on the service you have set up.

Regards

the mod/admin team.

Edited June 15, 2007 by baddad

[Paula]

<'> <'> <'> <'> <'> <'>

 

 

There was a time when my son wouldnt speak,spent all day screaming and stimming,would refuse to leave the house,refuse to wash,hated any change with a vengence and would go into meltdown....hed scream and yell most of the day and id be in tears thinking when will this end will things ever ever get better will we ever lead a normalish life.

 

It does change for us it did our son is now 13,attends a special school,walks,talks,blends into society all be it that you can see the stiches and the meltdowns and tantrums although not compleatly gone are few and far between because we can reason .yes reason with him and hes more open to change and other peoples ideas he will bend to our will a little now though he looks fowel whilst doing this and will verbally complaine.

 

I dont know how i coped and got through the early years of his life i thought it was hopeless.but its not...eventually youre child changes.you accept things and can cope with there ways easier and the best thing is you stop giveing a toss what others think.

 

 

I beleive for the vast majority of asperger kids granted mines on the high functioning scale the future is very very bright.Never ever say never..........

[cmuir]

Meant to add ...

 

I think we're all in the same boat in that we cope - because we have to!

 

Caroline.