Coping as a parent

[HiawathaDidntBotherTooMuch]

DC2 has obvious SN. He has a severe speech and language delay (no words at all at nearly 3 yo, and is only able to say four of the consonants, despite having weekly private salt for 8 months with incredibly slow progress), poor understanding, suffers from sensory overload and is, in my opinion, likely to have ASD or social communication disorder.

He is on a waiting list for portage sessions (5 months wait), support in pre school ( when he does start) and will be seen by a paediatrician in June. DC2 has no diagnosis as nobody seems at all interested in referring him for an assessment. I have pushed for it, but am told that he is too young, and that it won't make a difference to how he is treated. At the moment, we are working on his understanding, attention, concentration and social interaction, all as precursors to language.

I am very down. I am also very tired. I have a demanding job, a long commute, an older child, and DH works very long hours. DH's family live close by, but my family are hours away (although they do visit every six weeks and stay a few days and are very helpful and supportive when they are here).

I cry nearly every day about the difficulties DC2 has, the impact on all of us short and long term, and what the future holds. I am so sad for DC2. It is overwhelming.

I am looking for empathy and support, I suppose. And to know that I am not alone.

Hi Hiawatha you're not alone. I totally emphathise. My DS is 3, he has ASD, SPD and speech delay. I have 10 month DD. Our families don't live nearby. We see them

Sorry posted before finishing. We see our familes 2-3 times a year. You're not alone. Please join the "virtual preschool playground" thread on MNSN chat page. There are some of us with preschoolers already diagnosed, some undergoing the process.

Hia having the SALT already - give yourself a pat on the back for that. And my friends ds said nothing until Christmas Day when he was 4 when he suddenly said 'cranberry and mustard'.

You are doing the right thing by trying to get a referral, so just keep on at your GP or change and try a new one.

You are having to deal with unmet expectations, like when my legs stopped working and it changed a lot of things in a short space of time. My nice counsellor says 'there has to be a time for grief, but in time you will develop, accept and enjoy a new normality' She was right.

In the mean time, I got helpful ideas from various places, one was to avoid pity - oh those people who thought they were helping by saying 'Isn't it awful' - well matey it was going OK until you said that. So getting a technique to stop them in their tracks was good. I just said 'enjoying life' whether it was true or not. That sorted conversation onto enjoyable topics.

Then I got my friends sorted into those who were good to talk to for a real heart to heart and those who were better for distraction like telling funny stories about puppy class or whatever. Luckily I have some New Zealand friends for sleepless nights.

I had a friend who said 'beware of self pity' and went through all the things I should be grateful for, like a source of income, a guaranteed meal and a roof over my head. It worked some of the time, I must say.

And my NZ friend said 'you need a therapeutic hobby' which I have since learned is called a displacement activity. At various times I have used reading, sudoku, work, puzzles and dh sport and writing. Just something that absorbs and gives the brain a release. Oh and fresh air and exercise help.

In the end we don't have a normal (for the UK) family life, but ours has a richness that I sometimes wonder if families without such challenges can really share. The rose tinted glasses are off, but after a blur at the start, the colours have turned out brighter and clearer than before.

I hope something in this helps

In the end we don't have a normal (for the UK) family life, but ours has a richness that I sometimes wonder if families without such challenges can really share. The rose tinted glasses are off, but after a blur at the start, the colours have turned out brighter and clearer than before.

This, with bells on.

It's horribly hard in the beginning, and you do go through and angry, grieving, feeling bitter stage. But things do get better I promise.

Stay around here and talk lots.

We have lots of friends with children. Some of them DC2's age, some a bit older. Being with them and hearing about them is so tough. It cuts like a knife. I feel so distanced and can't for the life of me understand how they are so seemingly oblivious to how difficult it would be for us to hear how wonderfully bright they are the overwhelmingly positive feedback they've had from nursery and pre school etc. I'm happy that they're doing well and of course I wouldn't want anything different for therm. But it kills me to see and hear it, and then struggle on.

Hiawatha, it sounds like we're at a similar place. I totally, totally get what you say about other people's DCs. I'm happy for them, I really am. But it hurts so much. Tbh I avoid them a lot now.

I don't have any words of wisdom but I just wanted to say that I understand

Thanks HHH3. I'm so emotional, crying every day, and now I can't even read my thread back to myself. I'm going to take a little break now. But thank you. I appreciate it.

I was where you are now-i used to cry driving into work,spend the day grief stricken while trying to hold down my job,then cry on the drive back home.

My ds is five now and we are all much happier honest! But I spent the time from just after his first birthday up until he was four feeling scared, alone and incredibly angry. I chose to pay for counselling every 2 weeks so I could spend a solid hour crying and rambling and I did that for 3 years. It was my only outlet.

Now my son can communicate (including swear words loudly when we're out and about!) and we have adapted our family life to bring out the best in him. He goes to a sn school and he is fabulous.

He got a diagnosis of asd at 2.8 years but we still had lots of 'he looks alright to me' and 'lots of kids are slow to talk' type comments which infuriated me.

Now I can just about accept that Ds has autism. But it took a long time. You will be OK. You are allowed to grieve and feel sad and angry. You can take as long as you need to work through these emotions.
it will get better.

Oh and i had anti-depressants which helped after a slightly bumpy start. Rhodiola and St John's Wort are nutrient equivalents.

Dear Hia, look after yourself as well as your lovely family, and we will be here willing you on.

My ds was three last week. He is totally non verbal. I was told over the phone about three weeks ago he's very very likely got asd. When I was pregnant with his sister about six months pg I was told he's got a DNA abnormality. He has a older brother I have fought and won a statement for.

I can't tell you it's easy, it's not. It's get easier for sure. It becomes normal. It becomes ok. It hasn't so far become easy, I just changed into someone who chews things up and spits things out. It all still hurts and sometimes I cry and think why? Why me? Why us? But then I think - because it is us. I move forward.

The friends who boast about their kids I find light entertainment. Seriously they are all geniuses. All way, way above average ;0)

The rest I'm happy for. It hursts seeing kids the same age.

But I'm a stronger person. Capable of more than I ever knew. Not by choice but necessity. I did all the stages of grief. I still grieve really.

What I would say to you is that you will find it easier to cope. You won't even have to choose to cope. Or try. It will come.

I don't ever now think " oh what if the boys was ok" because they are ok. But asd and dyspraxia is part of them. I don't contemplate a life where they didn't have sen. Not because I wouldn't like that, it just can't ever be.

I doubt that helps. But with four kids, two with sen I still work - I still enjoy life. I have dark moments but I never worry about small things. It put life into prospective I think.

I still catch myself wondering how the hell I got to this point. I am happy. I am in control. It is possible to feel ok again

And your never ever alone. Not on here. This is my only place to turn. It's all I need as well

Feeling a bit stronger over the last few days, but it comes in waves. Thank you all for your support. It means a lot. I think I will be getting to know you a great deal more over the next few years!

You are not alone. This board is amazing for support.
I found coming to terms with my daughters disabilities very difficult, the early days were very hard and I was very low. In fact i probably For the first year and a half I didnt stop crying. The turning point for me was finding these boards and also plucking up the courage to see my GP and tell her how low i was. She was amazing, I was referred to counselling and prescribed ad's. They didn't solve everything, but gave me a thicker skin to deal with what was thrown at me. And now a couple of years on, life is good, I still have those moments of fear and darkness but they are much much less. I never ever would have believed it back then.

Be kind to yourself, let yourself feel how you need to feel.

In the end we don't have a normal (for the UK) family life, but ours has a richness that I sometimes wonder if families without such challenges can really share. The rose tinted glasses are off, but after a blur at the start, the colours have turned out brighter and clearer than before.

This is exactly where I am now. My two are in their tweens and teens. They are amazing, talented, determined human beings who are now getting the chances in life they deserve. When they do my head in - which is often - it's now no more and no less than other parents get.

For me? I've lost a lot, but gained far more in the process. The relentlessness, fear and dark despair of the early years is just a memory now. I might get it again once they get closer to an age where they have to go out into the wider world of work, but that's a problem for later on - and if I hadn't have kept on in the early years, and if I had listened to the 'experts' , there would have been no chance at them having a problem like that at all.

None of us can promise that things will turn out rosy in the end. But we can promise to be here, and to understand the way things feel right now.