A lurker's story

[gemprincess]

Hi everyone, I am a long standing lurker. I have been typing out this message over and over but never send so here goes. I am mum to 4 children, 3 gorgeous girls and 1 special boy.Ashton is nearly 9 months now, he was born nearly 6 wks early due to my uterus giving up the ghost(long story).Anyway he spent 1 wk in intensive care and 2 more in special care.During the 2nd wk we were confronted with the news that something was not right. Being asked by drs if we thought he looked odd etc etc.Well at this time they listed his issues as a high palete, small jaw,sunken chest(not suprised since he had rds),periods of colour changes and bradicardias, wide nose,feeding probs and so on. We were advised to do chromosome testing to rule out certain disorders.He also had an exaggerated fontenelle for which he has had 2 brain scans.We spent the first 4 months scared stiff with various so called proffesionals giving their advice. He was put on pepti junior due to lactose intolerance and has meds for reflux too.He went in to hospital a few times at the start and has open access,but is doin so well at this time. As it stands, we have a dietician, ent consultant, pead consultant,salt,community nurse and nursery nurse.We were faced with an uncertain future which looks much brighter now but have no idea what has caused this. We have been teaching him to take pureed food for 3 months as he still has not lost his tongue reflex, we are startin a signing course in jan and have been referred to portage. Sorry this message is all over the place but i still cry when i go over it as i cant help but blame myself. I know that i shoulnt but i guess i have not dealt with the period after his birth yet. Would love to get advice from you lovely ladies and share this with people that understand.

Hello And so glad you have stopped lurking and posted.
sorry I can't advise, dd is 13 now do the early bits are a bit blurred. But glad to heat he is doing better.
it is normal to cry and to feel sad. things have changed for you. (someone will come along and word this better.)but it is all part and parcel of finding yourself in the sn world.

Hello and welcome to the board Sorry that you have had such a stressful time, and that baby days have been taken up by stressful things like hospitals/appointments/tests etc. 8 months is really very little time (especially when you have a baby keeping you busy!) to process all this - so be kind to yourself, and try not to blame yourself. Hopefully the signing and portage will be enjoyable as well as useful iyswim.

Thanks for the message.Since he was born my so called friends have disappeared, leaving me alittle lost. I live 5 hrs from family so have not been able to share this with anyone i can really trust. i have got my head round the fact that we may never get answeres but he is perfect in our eyes.

Hi welcome to this board (even though I'm sure you don't want to be here). Friends so disappear, but get replaced by better ones who you know will be there for everything.

Hello gemprincess and welcome. So sorry you have had a stressful 9 months. The people who post on this board are great and I'm sure you'll get lots of support and reassurance here.

Hey welcome hunny

my ds too was in intensive care for a week and special care for another two, but the time after that was much calmer. He has not been back to hospital other than for reviews and for his brain damage he so far only shows mild cerebral palsy. He is ten months.

And yet I have just finished a course of counselling to jabber my way through the early days, how come I was holding him and did not notice he had stopped breathing (answer: I was exhausted after a three day labour and had been a mum for only 12 hours), why did I consider leaving him and going home (answer: it is just one of those things your brain does to make sense of your situation ), and I just had to talk over and over and over again about what happened. It helped.

A real cliche and yet so true: Enjoy your babe, I bet he is gorgeous, clever and adorable. Don't let the clinical stuff take over. Play lots, it will help both of you so much. And be ruthless in rescheduling appointments so that there are days of not going anywhere!

And your situation sounds at least if not even more stressful.

Hi and welcome, gemprincess.
DD's first year was so difficult it's hard to remember what it felt likeit seemed we were always on tenterhooks, waiting for The Diagnosis (which never came). Every tiny symptom was a threatwas it truly just a cold/UTI/tummy bug, or a manifestation of something more sinister. But as time went on (she is now 2 and a quarter) I began to accept that we might never understand what causes her developmental delays. Winters have so far proved tougher than summers, as she is far more susceptible to coughs and colds than my DS, and she struggles to eat and seems permanently unhappy. But now it's the third winter, we kind of know what to expect.
I have some good friends, but have lost touch with others, usually because they can't handle their own feelings. Some just don't ring or have even moved away; some (most annoyingly) make me feel as if I am imagining DD's delays.
Having a child with sn is very challenging and isolating at timesespecially when you have to stick on a 'coping' mask for the benefit of the people around youand that's when this board is so useful. You might not always feel able to post when things are getting you down, but it's great to know it's here if and when you need it.
I have found portage incredibly helpful and hope you do too.

Gemprincess, welcome.

Please, please don't blame yourself for this. These things happen. We don't know why. They just do. Yet the not knowing why is the really difficult thing, I think? People go through grief, anger, despair, numbness, self-blame, because those are very human things to feel.

Anyone who's left your friendship with you and with him has missed out on a lot. People can be very unsure what to say or do, but as the others have said, better friends will arrive in your life. You need support for you, and rest for you, and time to be yourself rather than just the carer for others. I'm really hoping that the team you have realise this and will help give you some respite. Any good parent support groups where you are for parents in your sort of situation?

I'd love to hear more about your son. I'm sure he's absolutely lovely.

Hello Gemprincess

I am also a bit of a lurker but I do also post occasionally.

Be kind to yourself, you have entered a different world and perhaps feel unprepared (and scared).

I felt that my DS2's autism was my fault, blamed myself. Couldn't tell anyone that my heart had been broken.

However, I went to counselling and I spilled it all out. I feel differently about things now but still need a good cry every so often - for the things that make me proud/laugh, etc as well as the days when it's all a bit much.

Ashton sounds like a lovely wee article! Keep posting.

Hi gemprincess

I'm glad you have found this board and posted.

Yes we are lovely ladies on here and you will get lots of advice and support when you need it!

Welcome!

Hi gemprincess

Yr story sounds loads like mine. DD v similar to yr ds as a newborn. In our case it was a chromosome issue - picked up v early on. Am more than happy to share what we've gone through if you are intersted.

I struggled so much with it all - particularly first year. Went quite mental tbh and had complete breakdown. Life is much much better now.

Re the friends issue - I think bollox to em Wheat and chaff separation and all that. Might be hard to imagine now but you will meet much better people and have far more genuine relationships with people in the future. But now is really really hard cos yr just dealing with car crash of stuff. Its raw and you are grieving and shocked.

Please stick around here x

Hello and welcome!

My DD2 was also born nearly 6 weeks early, born dead and had to be resuscitated (I had a placental abruption) then they found at 4 weeks that as well as probable brain damage from her birth, she also had a heart defect and a genetic disorder. We took her home on her due date with an NG tube, oxygen, apnoea monitor and shedloads of medication.

Not quite the baby I had imagined but my god how we love her.

I found the first year very hard - non-stop appointments, surgery, visits, therapies etc. I got very depressed when she was about one, I found the anniversary of her birth really difficult and ended up needing 6 months of antidepressants and counselling to come to terms with my new life. The counsellor said I had post-traumatic stress disorder from her birth and grief and bereavement issues surrounding the loss of the baby I thought I would have and the one I got.

She is now 4.9 and at mainstream school with 1-1 support, can eat and drink (with help), can walk (slowly and not far!) and is doing far far better than anyone ever thought she would.

My story will hopefully help you see that however bleak things look the future is unknown and our children can often amaze us.

In the meantime be kind to yourself, take one day at a time, keep an eye out for any groups (we went to a special needs mum and baby group which was great and I made some fab friends) and enjoy your little boy . Oh and post on here because this forum is a great source of support!

Hiya and welcome

ask your paed and portage worker (when it starts) if they can advise of any groups you can go to

we used to go to a SN TOY LIBRARY, i WAS WORRIED ABOUT GOING AT FIRST BUT it WAS SO FANTASTIC

sorry about caps

I met lovely people who understand how I felt and got lots of support

It is sad that your so called friends upa nd left but as Jimjams said , you will find much better ones

I would also try for some counselling, so you can just talk and talk to someone, who wont give you loads of advice but will sit and listen, and listen and ..listen!

Gemprincess, there are lots of wise words on here and you will find lots of support and advice.

I think meeting other parents of children with special needs in your area is the thing I found most helpful and I waited until my daughter was 4! I was still in shock and denial until then and swamped by appointments. Having friends who understand what you are going through and who can give you advice on local schools and services really helped me.

It is very early days for you and a time of shock. Grab any support offered especially with the other kids so you can have time getting to know your lovely son and enjoying him.

Hi and welcome!

Not much to add except make sure you have time to enjoy your little chap - try not to get too bogged down with appointments. Hope you can find some groups, it's great when you meet people who just 'get it' and you don't have to explain everything to them. And take any help offered - great start with the signing and portage!

Thanks everyone for your kind words. My husband has taken our middle 2 girls swimming and Ashton has fallen asleep. Im sat with my 8 year old making snowflakes. I think the worst hit me 4 weeks ago when i became so ill i could not drive etc, as we have no real support we had to pay to get a nanny in to help with school runs etc.I starting to feel half normal but have not even considered xmas yet! Ashton has a severe problem with drooling and has since he was 9 weeks, anyone have any ideas for good bibs?(getting through them at a rate). I would love to go to a group but i have 3 school runs thru the day, my 4 yr old has a problem with her eyes and has had 4 ops in 18 months and has regular appointments too.Days seem to pass and i dont know where they go.I have a good team of people helping us but i dont get on with my health visitor, She came round in the early weeks and proceeded to tell me my son had chronic health issues and i had to fill out a caf. I told her direct that he was my son and i would do what i thought right, she left in a huury and have only seen her 2 times since then!!

ejb- it would be great to hear more of your story, We have had 3 sets of blood taken for chromosome testing. We were told they had not grown very well but they ruled out pierre robin, and then more scary 22q11. we have left testing for now, going to see what the future holds.I think alot of the time they guess, We had a mention of cp and they are obsessed with his fontenelle but all in all things are developing just slower.

"Since he was born my so called friends have disappeared, leaving me alittle lost"

I am so sorry to hear this, and hope you will feel supported on this board.

Hi gemprincess, welcome to the SN board.

I have two little boys and my youngest has the 22q11 deletion you mention, (thankfully without the heart condition, although he has just about everything else!)and family life is totally different in many ways to how I had imagined it would be. It is just different though, not better and not worse. Like you say the love is exactly the same.

With regards to friends I am really sorry to hear this, but sadly not shocked. As arabica said often other people struggle to deal with there own emotions regarding children with sn. You will meet some truly wonderful people though and different friendships will develop.

I hope you get some further insight into your little boys condition soon, but really just enjoy him. That is my only regret that I spent so much time in a state of anxiety that I didn't really relax and enjoy my baby. Now he's five and I can't believe it!

Hello and welcome. Glad to see you've posted finally! My DS is 5 months old and having a bit of a time at the moment, bless him, but I suspect that even when he's 5 years old, I will still cry and find it difficult to think back to his early life. You are not alone there!
I am sorry you feel like your friends have let you down, but I hope you'll find some support and understanding on here. I have.

Hi Gemprincess.glad you posted the it is always supportive & helpful here.
It is not your fault, but I know its easier to say that than truly believe it. Mys ds2 is almost 6 & its only this yr that i have gone for counselling, it has helped.

I have lost some friends & feel differently about others BUT i have made some wonderful friends that without DS2 I would not know.

My ds2 was born at 28 wks & spent 2 months in SCBU with all the ups & downs of a v prem baby & lung damage.
The 1st yr was hard, he has mild CP, autism, learning difficulties etc etc. But he is a fantastic important part of our family & beautiful.

I hope you continue to get good support & I second the recommendation of sn mother & baby group.
Remember to take care of yourself not just everyone else! xx

Hiya gem, you will know me from antenatal group

you probably know but I also am mum of 4; ds1 higher functiong autism / aspergers in mainstream ed, 9 wednesday; ds2 nt (possible dyspraxia nowt major); ds3 autistic, minimal language, off to special school soon (5.5), and ds4 who seems fine so far, 8 months next week

you know where I am x

Hi Gemprincess. DD2 has GDD and we are currently awaiting results to see what may have caused this too. It's awful not knowing, and it's very upsetting when you see her with her peers who are so ahead of her it's not true.

I'm sorry to hear that you have lost contact with some of your so called friends, but as many mums on here have already said, you will meet better ones. I now attend a sn therapy group and I have met some lovely mums there, and I would now choose to spend my time with the sn mums than the nt mums.

If you can go to a sn group of some sort I think it would really help. It certainly helped me come to terms with DD2's condition and 'accept' it. There are days where I really struggle with it all but the good days are now more frequent than the bad so this has to be good. I think becoming a mum you automatically start feeling guilty about everything, but please don't blame yourself these things happen, we don't know why but this is the hand we have been dealt and it is up to us to do the very best by our beautiful and perfect children. xxx