How do you other mums keep going? How do you 'come to terms' with dx?

[dietstartstmoz]

I've been posting on and off on here for about 9 months now, since concenrs were first raised about DS2 and ASD. I have had some great advice on here. We have had a busy 9 months, Ds was dx with ASD in March and he's getting support from different agencies, and now a few hhrs 1-2-1 a week in a private nursery. He will be starting mainstream school in sept, the school appear to be very supportive and we are going through the statementing process. Lots of agencies are involved in the transition to school and he gets some SALT, although this is more monitoring him and giving nursery some targets to work on with him - all good and positive
But I am still feeling very upset and heartbroken that my baby has ASD. I know this is normal and i'm sure everyone goes through this, but when does it ever start to get easier? We have told people and I am good at the 'brave face' thing but I keep crying at home, and just feel very miserable. I struggle to see anything positive and am terrified about the future. I have no interest whatsoever in going to work ( a job I usually love). I have thought about going to the dr's but don't know if I want to take any pills, and short of finding a cure for autism I don't think anything will make me feel more positive. he is such a lovely boy but I hate the feeling of being helpless. You think if you love your kids enough it will be OK but then you get your dx and you realise your love is not enough.
Just wondered how you keep going everyday?

Hi. Have DS x 3 and DS1 diagnosed with severe disability when 2. You dont feel you'll ever get over it but you will. You need to grieve and give yourself the time and space to do that. I found it began to get easier about 2 years after diagnosis. Things like the future and fears are all natural and to be honest you will find that you'll be able to face things as they come along. I always felt sick about DS1 and the future and now we're nearer it I'm coping. One day at a time and all that. Talk to people that understand as it can be very isolating and protect yourself from places and people that dont help. Above all, know that you're doing ok and that all you're feeling is normal under the circumstances. Be kind to yourself. You will be able to be all that he needs in a mum and along the way others will help you too - its ok to take that help. You are not alone as there are tons of us mums out there who understand.

Thanks Josma, I know what I am feeling is normal it's good to hear that i'm not alone. I have some lovely friends in RL who are very kind and supportive, but they don't have any SN kids and neither do my family, and it drives me mad they evryone seems to have a 'story' about random person who was dx with x,y and z. I don't really care, I just care about my DS. I always feel like I should be doing more, but I guess that's a normal feeling too. If he gets his statement, then the whole process, from initial concerns first being raised to dx and getting a statement will be done within 12 months, and that's because we have pushed. I can be brave for all the professionals, but when i'm on my own i just fall apart. I need to know it will be better eventually.

What?

You never come to terms with it.

What you do is come to terms with never coming to terms with it iyswim and you have a long time to do that in. You then focus on the probably solving and the finding solutions for the next step, and you take pride in knowing that you'll not lie on your death bed wondering if you did the right thing by your child. You'll get things wrong of course, and you'll have guilt but if you're here it is because you have already become quite determined to support your child and you should be proud.

Thanks Star. That is a really good post and I identify with everything in there. I had no idea TBH that I would probably never come to terms with it but thinking it through, I think that you are quite right.

I think this could be something that may happen more in the USA, but they have Genetic Counseling for families who have a diagnosis of ASD. There is a whole section about it in Autism Spectrum Disorders (see the menu of the right hand side) to help explain some of the possible family genetic issues.

Ds doesn't have a diagnosis yet, he has developmental delays, but he is having genetic testing, and is waiting for an MRI scan.I have really struggled to come to terms with the whole thing, tbh. The things that I am finding that help are:

being on anti depressants (I was really struggling to focus on anything but ds, which I can't do without completely ignoring/losing temper with his older sisters)

talking to dh about it all, and remembering that he is going through all this too.

Talking to people on here. (I have some wonderful friends in rl, but I only vaguely know a couple of mums with dcs with special needs, they and the lovely people on here are the only ones who 'get it')

Oh, btw, I still fall apart on a regular basis, despite all the things I mentioned!

I've 'come to terms with it'!

In that it doesnt make me feel sad anymore, I dont wish her disability away, its part of who she is, I dont look at other families and get a lump in my throat, I love and am proud of us as a family, I recognise that she is happy with who she is (as much as any teenager is happy!), that she brings so much into peoples lives who work with her, that she, and others like her who need assistance, have an important role to play in encouraging the nurture/caring side of people and society.. I could go on.. yes we have many battles, but mostly we win them, and always I learn LOADS along the way. Its changed who I am for the better. Yes theres times when I cry, struggle with schools, need help etc, but there are those times with my NT son too- thats kids for you.

BTW- she's 14- its taken me most of those years to get to this place! I think you will get there, maybe not for a long, long time. A marathon not a sprint? x

Thanks for the kind words. Maybe I will stick 'a marathon not a sprint' on the wall! That's so true. He really is a lovely boy and is a very happy contented little boy, but it's bloody hard. I hate all these people being involved with my family, I know it is not about me it's about him but sometimes all these bloody do-gooders and their 'have you tried a sticker chart', etc, I could happily tell them where to shove their sticker charts. I work with teenagers, and some of those have SN/ASD and I see what they are going through in mainstream schools and I just want to weep for them, and I think could that be my DS in 10 yrs time. We have a place for Ds at mainstream for sept but now i'm thinking should I look at a special school for him? Maybe he would be happier there? Sorry, rambling. I'm just heartbroken that he will have such difficulties and I want to make it Ok for him. I need to pull myself together, and maybe I will stop expecting it to be Ok and then maybe one day in yrs to come I will suddenly realise I do feel better and it is OK. I'm impressed with those of you that are strong and keep going, and to you Alys, for coming to terms with it.

Your son has only been diagnosed very recently and you've got a lot going on all at once, no wonder you feel the way you do. My DS was diagnosed 18months ago and alot of that time I feel i've been living in a fog. I felt I really can't go on feeling this way forever. I've read loads of books trying to feel like I was doing something.

A book called 10 things every child with autism wishes you knew was really useful and really helped me.

Be patient with yourself, the grief stage is normal and you will come through it. Maybe if you haven't already meet with parents going through the same I found that really helpful.

Big hugs to you. xx

Thanks Chucky, we have the book-it is doing the rounds with the grandparents at the moment. No, I don't really know any other parents going through the same thing as us. We know another family and their DS2 is ASD but more severe than our DS, and they're lovely. She's a mom at the school and i've had some chats with her, she's very nice but puts on a brilliant 'brave face' and seems so positive all the time.

Are there any groups near you? We have a parent support group that meets once a month I think they are part of NAS. I'm in hertfordshire if you look on NAS site and see if there's a group near you.

x

yes read lots and try not to let everything overwhelm you, it will be better given time you will come to terms and see ds DOES have a future and your not helpless there are many things you can do like therapies and ways/ stratagies of coping when you do get some help and assistance and when perhaps id advise you could go on the course for dcs with ASD via CAMHS and perhaps meet with other parents via NAS or your local, nearest ASD SS (they usually have parents meetings anyone can go to) and another way meeting with like minded parents is 360 play (activity soft play centre) they do a night at my local one twice a month for dcs (any age) with ASD the more you talk the easier it gets i think and post on here someones always here to chat if you need to and maybe stop worrying what people think of you anyone (and ive done it too) has got teary or cried i did at the CAMHS office when your hearing all this negative stuff you forget all the good and loving things about your dc so be gentle on yourself things will improve

its true i guess come to terms i really mean you learn to accept and make it work and wake up one day thinking as you say actually it is OK

I think what helped us was :
taking joy in what ds does achieve, even when its small, (and avoiding weeding out the insensitive people who rub in how well their kids are doing,)
Being kind to self, (including taking anti depressants and talking to a counsellor when I needed to)
Learning from the wise women on MNSN,
making friends (thru groups) whoes kids have similar issues.
realising (thank you to the person on here who said it) that working with the professionals is like chess rather than all in wrestling, .

Hope that's useful ,

its hard weeding out the good advice from the bad (not that its actually bad but just some things work others dont dependant upon our individual dc's) and avoidance of those 'types' of people who as you say bang on about their perfect little angels ( bet they are more like tha brat on rugrats really) and the DO GOODERS agghhhh like my lovely old friend saying are you sure hes Autistic and yes it is rather a strategic game although it shouldnt be which makes me angry because its our dcs future not a bloody game its just a job 9-5 for most of them and we live with it 24/7 365 and will do for many years to come possibly even into our retirement if dc can not leave home

I think it does take years to accept it. As all children get older you also compare them less with their peers and I think that's a really helpful thing.

I get a great deal of comfort in knowing my daughter is in a fantastic special school that we fought for and she is being really well supported there. My child is now 13 and coming to terms with her needs crept up on me very slowly.

My other child who doesn't have additional needs can be much more of a challenge and worry at times

VJG13, I know exactly what you mean! Ds is 11 now and life is so much easier than it used to be. His school is fantastic too which really takes a great weight off. It was much harder before he went to school and we had so many more appointments with speech therapy/ot etc. Now it all happens at school and our family time is our own again.

Obviously I do have worries about ds's future, but at the moment day to day he gives me much less cause for concern than his 15 yo sister! It does help to realise that NT children give their parents a lot of sleepless nights too, just for different reasons.

Not sure I'll ever adjust to ds's new diagnosis. But I can take comfort in doing my absolute best for ds - educating myself and working hard to help him in any way I can. When I'm feeling overwhelmed I tell myself that all I can realistically do is take it a day at a time and cherish the good in each one.

I think everyone deals with it differently. It's a form of grief (and I mean that not just in the oft-quoted sense that you suffer a bereavement for your "expected" child and have to get to know the new one; there's more to it than that because that grief is transient but you will always see your child's differences and your child's missing opportunities which is a more long-lasting thing) and everyone handles grief differently, and there's no right way of doing it. In particular the "hollywood" way of doing it, where parents of children with disabilities are Mother-Theresa figures who instantly assume a serene Stepford-Wives style state of loving martyred acceptance, is completely unrealistic. It's OK to be angry. It's OK to be upset for a very very long time.

Personally (and this is just my way) I make a clear distinction between "acceptance" and "coming to terms". Two different things. I will never, ever "accept" DD1's condition. It's not OK and it's not fair, because of what it does to her, not me. It seriously impacts her health, life expectancy and quality of life: she has virtually no opportunities and absolutely no chance of independance. I don't "accept" that, and if I ever did, I would be doing her a disservice.

And yet. Life goes on. We get up in the morning, we dress her, we shovel her meds in her, we stick her on the LEA bus to her SN school and eventually it's so routine that the fact she will never dress herself, the fact she is at a SN school, just doesn't occur to me. It's "normal" for us. Of course, if I do think about it, I get upset, but there does come a point where you stop thinking about it. Not because you don't mind it any more, but just because it becomes so routine that your brain stops drawing your attention to it. You do the best for your child - just like your other kids - and that's a job well done.

So. That is me "coming to terms" with it. As Whitney Houston said: "it's not right. But it's OK."

Wise words, thanks. I'll print this thread off and read it when i'm having a bad day. At the moment i'm just angry, with whatever has made DS2 have ASD, and being so painfully aware of the differences between him and his peers. I will try and seek out a support group, or some sort of parent group to try and meet others, and will come back to the wisdom of MN when I need it.
It's a marathon, not a sprint after all, and 'it's not right, bit (eventually) its OK'

I agree with so much on here. My DD has a genetic condition and was diagnosed at birth. It means a lot of procedures for her, meds and worry for life etc and it didn't sink in for a bit. I actively avoided reading up on it as didn't want to know too much about life expectancy or chances. Then I got obsessed and read everything and talked for hours to other parents I had met through the support group. It used to suddenly shock me when I was walking down the street and I would feel awful some of the time although I suspect this stage coincided with a bit of post natal depression tbh too.

About two years in I got to the stage I am at now which is that every now and then hospital or illness reminds me it is serious but generally I can get on with life without thinking too deeply about it.

In novemeber though I learned that her language issues are not just a delay and are likely to affect her always in some form and her head is too small, we are waiting for test results at the moment to see if she has epilepsy or areas of the brain that haven't developed properly and also more genetic tests.

So I'd say I'm where you are with the worry for the future and not knowing how it will go, trying to get statementing sorted, it still feels a shock and I have found myself avoiding people with NT children sometimes, I am trying to get to know more families with children with SN and have good and bad days.

What I do know from experience with the other condition though is that it just becomes part of life and little achievements feel more exciting, it helps to talk to parents whose children have similar issues and you have to be nice to yourself and not beat yourself up about feeling low about it at times.

Hi.

When my dd was diagnosed I was lucky enough to attend a talk by a disability group which changed my life. All the tests and peoples reactions (doctors, schools, friends and family) made me feel as though something was wrong with my child. There is nothing wrong with her - she doesn't seem to think there is anyway. What it must be like for a child when everyone starts fussing and being concerned I don't know. Children with disabilities don't think there is something wrong with them until someone points it out.

One of the things that the talk did was have disabled adults speaking about their successful lives. This forced me to look at dd's future in a positive way. There was no way I could look at that person and think her life was a tragedy, she was a positive, successful person. Up until then I had been wrapped up with the here and now, that I had to 'fix' dd in some way. Be proud of what your child WILL achieve, don't worry about what he may not achieve.