Newbies - Can We Introduce Ourselves?

Hi Sal

It seems that everyone reacts to the news of their child in a similar way. There is shock, grief, anger, confusion and a lot of fear. It's unknown territory for anyone as suddenly you can't take your child's development for granted and you desperately want to know how your child will be in the future. No one can really tell you what the future holds, whether your child will walk or talk. All you can do is work from the assumption that they will both walk and talk, but that your child will need extra time and attention to achieve these milestones. Right now, Emily's brain needs lots and lots of stimulation and lots and lots of opportunities to try things.

My son is 4 with athetoid/ dystonic CP. He didn't have it from birth, but from 6 months old. It was very difficult. I always tried to do age-appropiate things with him and tried to focus on things he could do and not the things he couldn't do. We hid from the world the first few months because I was too bereaved to face it. Counselling really helped me talk about my feelings and one day the cousellor asked me who I felt most sorry for, my son or myself. That was a turning point for me, so I decided to face the world again. My son speaks with some difficulty, but when he does a lot of funny and cheeky stuff come out of his mouth. He's really bright and goes to a mainstream school with full support. He is also a full-time wheelchair user. He is accepted as himself first and foremost and his disability is secondary. I feel that I'm at the end of that torturous journey that you have just begun emotionally and that's when you reach the point of acceptance.

Looking after a child with CP is a practical job too. There will be lots of appointments. At Emily's age she should get an OT that will assess her sitting needs, a physio to work on her gross motor and order her a standing frame, a speech and language therapist that will advice on feeding etc. Make sure that you get all the services that your daughter is entitled too. You've already had encounters with the professionals. Some are not as sensitive as they should be, but you will also encounter some amazing therapists who will teach you loads. Athetoid CP is rarer than the spastic type, but it's not that rare. I can really recommend the Nancie Finnie book "Handling the Child with Cerebral Palsy at Home".

I hope you'll start to see the light at the end of the tunnel sooner rather than later and don't forget that Emily is a child like any other at the end of the day. She just has more needs in certain areas.

Hi Sal & family, Can't offer you any advice I'm afraid as I am new to this as well. Lucy was born 10th may this year suffering from a viral infection that has damaged her brain. Just wanted to say I know exactly where you are emotionally it's very hard to accept that your precious child has such health problems. I think it's like a grieving process, Lucy too has fought so hard to stay here nearly lost her 3 times so I owe it to her to be positive & I do try, just wish we had a crystal ball coz it's the not knowing how she'll be when shes older that hurts the most. Love to you all, this site is a huge support to me, hope you find it like that too. x x

Hi Sal & family,

I also had a uterine rupture in August 2005. My Daughter Ruby is now 14 months old. She has been diagnosed with CP and they think it's dystonic, the basal ganglia is the part of the brain that's damaged. Basically her tone fluctuates between tense and floppy and she can't control the gradiant. She doesn't appear to make involuntary movements or seem restless but extends and acrhes quite a bit. It was a massive shock for us, you don't think these things can happen to you, you'll know all this. I don't think I'm over the whole birth thing it was awful!

Emily sounds quite similar to Ruby at that age with the grasping etc but it will come over time. Ruby isn't sitting independantly yet but has got a little bit of sitting balance and her head control is quite good but still needs to improve, however her hand function is pretty good although nowhere near age appropriate, she can't transfer from hand to hand but can play with toys in either hand. She's a very bright little girl and has a big personality, she trys very hard to do things and is very determined but most importantly she has a beautiful smile and is a very happy little girl. Thank you for sharing your story on the Birth Trauma website, it was my first visit I may even put on my story.

Keep in touch.

Love Lisa, Steve, Michael and Ruby.

Hi there we are in a similar situation, although we think Jack has quad cp. We are still going through different tests genetic etc as they dont want to diagnose jack. Although he has great head control, laughs, smiles, babbles eats solids which are all posotive. But Jack is not reaching out at 8months it feels like he may never do this and we feel very scared for Jacks future. Some days i cope others i cant believe this is our life now and its very grim. I really wanna get to know other mums and dads who are goin through the same as its becoming very hard to be around "normal" babies. Hope to hear from u soon xx

Hiya

Our son Tom is 17 months old and has quad spastic cp. Tom is a twin and was born 2 months early as his sister Iris was struggling when I developed pre-eclampsia. Nothing traumatic happened at birth or in special care to explain his brain injury (PVL in both hemispheres of the brain damaging the lateral ventricles). It seems likely that something happened to the blood flow or oxygen supply during my pregnancy. We'll never know.

Like Steph's Jack, Tom had real problems opening his hands (he suddenly started opening thumb and forefinger at about 9 months, then a couple of fingers and now can use his whole hand although his little fingers don't really like to uncurl). His hand function really has improved amazingly quickly in the last 6 months and he can now eat Cheerios with a pincer grip and also cross the midline to swap a toy from hand to hand. It takes time but I'm sure Jack will get there.

Tom was diagnosed with colic for the first 11 months of his life - this diagnosis did not explain away all of Tom's problems and we, as his parents, spent 11 desperate months just knowing something else was wrong but being told by so-called experts that he was just fine. We was diagnosed with quad cp at 11 months. Tom also has a bilateral convergent squint which has been corrected with botox. He has some issues with drinking milk and swallowing air (we use Thick & Easy in his milk) but does really well with his solid food, and is really starting to use some words and vocalise a lot.

He's such a smiley happy chappy and we're so lucky to have him (and his sisters). We've been through a lot as a family - such worry and distress before his diagnosis and more of the same after we were told he has cp but I'm just getting to a point now where I cry less, feel less worried and am really enjoying just hanging out with him and seeing him progress. I worry for the future but I know we'll have the strength between us to make the right decisions, help him with the things we has the capacity to learn and help him come to terms with the things that he can't do.

I'd love to chat with any of you - this is all so new and I'm really feeling my way through it as well as being torn in a billion directions because I have 2 small babies and a 3 year old who all need me.

Much love to you all

Maria x