How do you cope in the really early days?

[ruth2010]

Hi,
I've read posts from a lot of you who have kids with ASD, and some of you who knew something was wrong very early on.
My son is 9 months and showing lots of the signs of ASD but may also be severely learning disabled? He was 10 weeks prem and had meningitus. He has poor eye contact, doesn't respond to name, has frequent periods of rapid breathing & over excitement, moving limbs, cries a lot and very frustrated.

I am finding it really hard to cope. I am grieving but also finding it hard emotionally to look after him. I am starting anti-depressants but would love to hear from other parents how they coped in this early stage with all these difficult emotions.

thank you xx

I remember when we first realised that something was different about DS1, when he was about 14 months. When we looked online all his symptoms screamed autism, and I felt sick. For DP and I it was as though he was diagnosed in that instant. For us those early days were the very hardest, by the time we got an official dx a year later we had zero doubt anyway.
For us it just took some time to get over the initial shock, grieve the child we thought we had and rethink our expectations. Then fall in love all over again with our very special boy.
It does get better, and you don't need a dx to access some support.
Do you have supportive family and friends?

I went straight into the grief process, and worked through exactly the same stages (starting with disbelief, followed by the most almighty ANGER) but mostly I remember alternating between numbness and unimaginable pain. I even had the urge (momentarily) to run away from it all. It was too huge, too unfair and too cruel.

But yes, things do get better, and you have to hold onto that. Right now you have to go through the pain, as it's a completely normal, and essential part of the process, but it does and will subside. And you do reach the stage of acceptance, whereby life normalises. And can often be wonderful. Just not as you would have imagined!

It is very hard to deal with,but you will get stronger and more able to cope in time-you do need support-It got easier for me when I found people in the SN community-this was through a hospital group-perhaps Cerebra has a local adviser who can help you-or there may be an opportunity group near you-I felt the same as Riven in that it was difficult to be around non SN children-(or rather their parents)

My son is 14 months and I am still grieving for the son I thought I'd have. My older son also has special needs, but not as bad as DS2 and I'm finding life difficult. I find it very painful to be around non sn babies, and would like to find someone local to me who has a sn child of a similar age. But according to Sure Start and my HV, I'm the only mum in this position locally.

I didn't really start to cope properly until I started back to work. When I am at work I block it all out, my job is my lifeline, and luckily my boss is very supportive.

Have you tried wearing your baby in a sling? I used a wrap in the first few months and found it really calmed DS down. I now use a Scootababy carrier, and could not live without it on a bad day.

MN helps lots, as although I don't often post, lurking on here makes me feel better because I know I'm not the only one to be struggling.

It's good to read that stuff gets better when they get to 2. I'm going to hang onto that thought!

Is this your first child?

I went through a very bad phase when ds1 was first diagnosed. I started to have panic attacks and was very very emotional. I kept it together at work but struggled at home. It does get better, I found being with another mum whose child also had SN helped me. In fact it was this that got me through those very difficult days.

I remember a post/ thread a while back which was along the lines of - when do you comes to terms with your child's disability?

A reply post stuck in my mind, by Pagwatch I think, that said you don't really ever come to terms with it fully but you come to terms with not coming to terms with it. Hope that doesn't sound too depressing but it helped me..

DD has Tuberous Sclerosis, Epilepsy and MLD. After seizures started at about 10 months we got dx at 2 years..

It does get easier in the sense that you get accustomed to the life you've got.. eventually. As far as you can..

But I also think for me a combination of denial, withdrawal,posting on here and other forums, ranting to family and friends, shouting and crying and eventually getting some counselling helped me move through the profoundly painful stages at the beginning. However, I still have waves of grief and as she gets older (she's now nearly 5) there are other losses to grieve for but although very hard at times I move through them faster.

All that considered and all the crap stress that goes with daily life, dd is so wonderful now with her own strong character and I feel flooded with love for her that has grown as we have got used to the person she is and not what she may have been.

Have read that back and it sounds a bit trite and I may have been annoyed by such a post when at your stage of things.. but I do hope things will get easier in time.

The 'Welcome to Holland ' poem was quite helpful at times in the early months although I have a love/hate relationship with that poem, did speak to me at the time. google it - it's easy to find..

Most of all, take care of yourself.. treat yourself very gently and take one day at a time..

Hi Ruth, you've come to the right place, virtually everyone on here has gone through or is going through what you are feeling. MN has been a lifeline to me, (although I don't often post).

I agree with what others have said, the 1st 2 years are the hardest. DD2 was 6 months before we knew anything was wrong, and she was 14 months before we started to know the full extent of her difficulties. I cried everyday for a year, and then every other day for another year. During this time lots of therapy was put into place and we ended up under 10 different NHS depts and life became REALLY full on. I can honestly say 3 years on that it's only this last 6-9 months that I've really come to terms with it all.

DD2 is making wonderful progress, she's happy and makes me so unbelievably proud every day. She really is my little angel.

Some people here aren't keen on 'welcome to Holland' but I actually found it summed everything up really well for me. You may like it.

It's an emotional rollercoaster and it doesn't ever stop, the twists and turns just get generally less violent. As others have said it's a grieving process with lots of different stages and different people move through them at different speeds.

I found it dominated my every waking moment at first and 8 months later I've adjusted my perception of the future and my expectations. It is no doubt easier for me than for many others because DD1 has AS and is high functioning. Even so I'm really not looking forward to getting the results of tomorrow's play assessment for DD2 and starting the process all over again. Of course not getting a dx for her could be even worse.

You do learn to cope and you do start to see the positives again. Give yourself lots of time and don't let the inevitable thoughtless comments from friends and family get to you too much.

Thank you for all your messages.

I'm glad to hear it gets easier but it's also hard to hear all the pain you've all been through (or are still going through).

Yes, he's my first - took me over two years to conceive.

I've got a supportive family but they live up north (I'm in Brighton). My husband is coping well but me being so depressed is putting loads of pressure on the relationship. Friends don't seem to really get what i'm going through.

I can't face spending time with mums with non-SN kids either.

I'm encouraged that some of you are now in a place where you feel really proud of your child. I really hope i can get there too.

Hi Ruth, just to say I live in Brighton too. There is an SN baby and toddler group run by parents at the SureStart in town if you don't know it already. Amaze have the details.

DS1 is 14 so it is many years for me since the early days. He has severe learning disabilities and challenging behaviour and life hasn't been easy. That said - and even though I find his behaviour worse than ever - with the help of respite and - finally - a group of SN mums I can laugh with, life is pretty good on the whole. When he was born, I remember saying to my DH that I felt I could never be happy again and both of us suffered depression on and off and terrible grief. I found it hard to bond with DS1. I also found Brighton so fucking right-on...except on disability issues, but I now enjoy living here and it is not nearly as bad as other places for SN provision.

I found it better once he was at school and the early days were probably my most painful times. I also feel proud of DS and I embrace his madness. He is bonkers and I love it! Riven is right, I too wish that Mumsnet had been invented when he was young - it would have saved me so much isolation. Hope you find your feet and meet some good people here x

The other posters are right - the early days are very difficult.

I too remember the awful depressions, the feeling of wanting to run away (I had my "route out" with dd2 all planned).

I slowly found RL SN friends through Portage and Physio groups - I had to make the first move to get phone numbers, etc and meet for coffee (on neutral ground first) and establish friendships which I now value a lot.

My dd2 is 8 now - and one of the best things for us is that we have 2 other "normal" (whatever that is!) dc's. Life is very complicated but would be much harder and less rewarding without all of them.

Give yourself lots of time, and take any offers of help seriously.

Thanks. I've been in touch with amaze and they've been helpful. Have also met a couple of mum's with SN kids locally.

Definitely at the stage of struggling to accept. Will this just come in time (until he is 2 seems so long to wait!) or is there anything I can do to help me accept?

I'm going back to work part-time in Jan which I hope will help a bit. I'm desperate for another baby but know this is an unhealthy reaction to the situation.

No, another baby might be just what you need? How will you feel about it in a couple of years?

Agree with the other posters that it does get better by 2 yrs - I think because all the worry about what might happen becomes more of a reality by this age. My DD has brain damage and so has been a waiting game from day 1 and my imagination has been far, far worse than the reality.

Glad there are some groups around you. I have only ever been around NT children with my DD because we live in a rural area and she is the only one to have these kind of difficulties. Has been tough from that perspective.

I'm from Brighton too Ruth although now live in West Sussex but generally there is some really good provision in Brighton that friends have been able to access which doesn't really exist where I now live so we have been gutted we moved!

I'm glad you've made contact with Amaze. I found them really helpful and their book Through the Maze is very good if you haven't already got it. There is also the SN group 'Sweetpeas' - that should give you access to some RL SN parents who have been or will be in your position.

I would think having some counselling may be helpful to help move you through the inevitable pain that you feel now. Especially as you took a long time to conceive, ( as I did with ds1 ) it can put a different emphasis on the significance of the baby's arrival I feel and may complicate your feelings. It may be good to try and unravel all that.. and work through it. There used to be a counsellor attached to the RSCH Trevor Mann unit, who saw people who's babies were having difficulties. Could you still access that I wonder? Or if not I have some other knowledge of various services if you wanted to explore that? Could PM me?

I work part time, although I am currently wondering if I can continue working as the pressures of both have become tricky for me, but it has helped me remember who I was before kids and is definitely easier than being with the kids! DH and I share childcare and we both work part time and both agree that the paid work out side of home is the easier option! So it may be really good for you to return to work and see people and feel that you have that mental space. Everyone at work knows my situation and have been really supportive, despite not having a clue what it's like, apart from a colleague who's SN dd is now 25.. She gets it.

Really hope you can get what support you need in these early days.. Take care.

Thanks. You're all right, mumsnet is a bit of a lifesaver!

Yes, already having counselling. Helping but opening up a lot of stuff and often very upsetting.

Ironically, I work as a psychologist for the NHS with kids with disabilities and their families (but not locally). I think all the knowledge is a hinderance at this stage...I kind of wish I was blissfully ignorant to any of his problems! Will hopefully help me manage all the systems and services later on but not helping with the pain right now...

Hi Ruth, those early days, weeks & months are hard. Especially when told to wait & see.
My ds2 was born at 28wks & the not knowing, the watching, the waiting, the wondering was just awful.

DS2 was a very unresponsive baby & toddler, he just wanted no stimulation & was happiest if left to lay in this cot. It was heartbreaking but gradually, very gradually his little character & personality did emerge. He is a very cheeky 8 year old now.
DS2 never gave eye contact or reponded to his name but alot of his problems were down to poor head control & low muscle tone- he physically couldn't turn his head. It ttok lots of physio, working on developong his reflexes & working on showing him his arms 7 improve his head response.
DOes your ds have a physio? If not get a referal, same with OT both ahve been invaluable to us as has his wonderful community paed.

It is early days but you've heard that enough I'm guessing!
I have also had counselling & taken AD's but it does get better, honestly. Take care.

I don't think there is a quick fix though having DS2 was a great healer. My grief had a roller-coaster momentum where one minute I thought I was ok, but then would plummet again, re-living the moment of diagnosis and various upsetting situations where people I thought were friends drifted away. Time has been helpful. I now no longer look at other teenagers and think 'What if?'...ever. I can't imagine DS being any other way. I think I have definitely got to the acceptance stage and I never thought I would. You can't rush it and it is perfectly normal to feel like you do. Having a child with special needs is so out of other people's frames of reference, it is difficult to find people who really understand what a devastating experience it can be.

I think the initial total confusion, anger, grief, ignorance, depression and general numbness does subside after the first 18 months or so. In that sense, you will feel better.

But then I find that although I can deal with it all better, I'm back to work and can just accept it as part of my life, I now have a really deep sadness that's always there lurking. Every time my DS smiles and laughs at NT children running about it breaks my heart. I know my DH feels the same.

I still really can't stand taking DS to gatherings with lots of children, it's too painful but then it's not fair on him not to. So you just have to get on with it.

My DS is 3 now but I'm nowhere near the stage where I don't have a fleeting twinge of sadness or 'what if' every time I see a little boy about the same age as DS.

I'm glad you've met some other parents of SN children though - I was hesitant to do this at first but it was absolutely the best thing ever. In some ways it's a relief to appreciate that there are other people going through the same hell as you....