brand new special needs... and really struggling to cope!

[DonnaBallona]

I posted a few times previously about my son who recently has had a mic-key gastrostomy put in. he has an unsafe swallow and potentially a few other leads they are following.

Jude has been ill his whole life, we are on first name terms with our local A+E because I'm there so often with him (honestly, I wish I was joking ) and I'm now too nervous to take him to my own doctors surgery because all I ever get told is 'but he looks so happy; he can't be ill!' when previously they have missed collapsed lungs, pneumonia and various other things because he's still smiling. I feel like im constantly fighting them to get the help that he needs... when Jude is ill, I take him when I feel like he needs extra help that I just cannot provide and I have never been wrong yet.

I'm struggling to cope with his diagnosis and I am afraid of what the future holds. people keep saying to me that they admire how strong I'm being but really, I'm falling apart. I'm devastated and I don't know where to turn for support.

how do you cope and where do you find peace?!

 

[lozzy21]

Have you tried any online support groups? Or been on contact a family? Realising that your feelings and worries are normal and that your not alone in your fears can make you feel a little less shit about everything.

We have a local carers center than can help arrange counselling etc, do you have anything like that locally?

 

[DonnaBallona]

I haven't found any yet Lozzy; Iv been googling but can't find anything related in the UK. I have the HV coming to see us on Thursday; I'm hoping she will have some ideas.

thank you for taking the time to reply to my cry for help. I appreciate your words. x

 

[mummy2o]

I find venting everything to mum helpful. She has always been there for me and DS.

Hopefully the HV will have some idea's, even if it is a support group for other parents with children with different needs, sometimes it helps to talk to someone who understand the difficulties in life with a child who has special needs. I remember going to a coffee morning for children in mainstream school who have special needs. My son and her son had nothing in common, but we got on like a house on fire and related a lot more that I ever expected. Sometimes getting it off your chest is the best.

 

[AP]

Massive hunny. I hope the HV can advise you on where to get some support xxxxxxxxxx

 

[kit10grl]

I read this post the other day but cant really find the words to put down what I want to say.

I totally understand how you feel. Whenever people tell me they think I am strong I feel like a total fraud because I think im collapsing. I felt that way through the whole first year. But it is starting to get marginally better as time goes on.

As the little glimmers come through of her development they spur me on to get through the next day and the next. I am frightened about her future and the fact I know I will have a lot of battles on her behalf to get her what she needs.

I have found facebook groups of parents a life saver. Other people who just get it. They let me vent, and I can see people further down the road than us who are doing better. It also helped me to see that while I was sad about robyn not being able to sit yet other parents were celebrating much smaller milestones. It helped me to change my perspective to look at how much she has changed in her development compared to her self rather than a chart or another child. That shift in perspective helped me find peace but it took a while for me to get my head round it.

I hope this makes sense I feel like im rambling but its been a very long week and its late.

 

[lilesMom]

Hugs hon.
Yeah it's weird when people say that we r so string.
We r just looking after our kids the best way we know
Like everyone else.
There is no magic in coming to terms with it.
But I agree with previous poster charts and comparisons to other kids do us no favours.
Look to ur lo s achievements and celebrate um all.
Nomatter how small u think they r xx
Hope u hve some peace hon xx
Dont attach blame or focus on what's wrong.
Focus on positive asmuch as u can.
It helps but we all hve bad days xxx