Hi, my name is Emma!

Athion · December 2018

Hi, my son is 8.5 months old, and last week the pediatrician advised he has suspected cerebral palsy following a health visitor referral due to delayed physical development.
I have 2 other kiddiwinks, aged 6 and 3 who do not have any disabilities

JennysDad · December 2018

Hello Emma @Athion and a very warm welcome to you. Good to have you with us.
Please talk to us and tell us as much as you can of your situation, since the better we get to know you and your son the more easily we may be able to find ways to be of use to you.
I have some knowledge of the effects of CP and we have a specialist I'm going to tag in here, @Richard_Scope who will also be in touch with you.
Please don't hesitate to ask us any questions or to tell us anything that might help us to get to know you.
Warmest best wishes,
@JennysDad

Athion · December 2018

Ok, more details...Athion seemed a lot slower than my other 2 kiddiwinks to get control of hIs head. He was good at tummy time, but at all other times he had little control. I'd noticed that his thumbs were always tucked in, but didn't think anything of it. His arms were always pretty tense when dressing, I just thought he didn't want to get changed. As he approached 6 months old I started thinking about baby led weaning. But as he wasn't sitting up yet, I thought he wasn't ready. I just thought he was a bit slower than the others and he'd catch up.
I went to see my health visitor as I was feeling very anxious and low and I mentioned about Athion's abilities. We decided to do his 8 month development check at 7 months and we answered No to all gross and fine motor skills and she referred him to physio and community pediatrician. In the meantime, a friend who's daughter has cerebral palsy, held Athion for the first time and said his stiffness was similar to her daughter and took me to a conductive education group where the educator did a few movements with Athion and said 'how long have you known he has CP?' And gave us a sheet of daily stretches.
The physio was happy with those stretches and said we needed to see pediatrician ASAP.
It feels like 5 weeks ago, my baby was a bit slower than the others, now he has suspected cerebral palsy, daily physio, has to be spoon fed and nobody can tell me what he will be able to do, what caused it, why he is like this, and what his future will hold.

JennysDad · December 2018

Hello Emma @Athion and thank you for getting back to me. My apologies for not getting back to you sooner - I've had to be off line most of the day.
You have had/are having an awful time. I remember much of this only too well. The not knowing, the shift in one's life so that it now centres around one individual who cannot yet speak for himself, the questions over the future, the doubts and misgivings. I wish I could hold your hand. It is very likely that I and my daughter's mother have experienced every feeling you are going through - which does not mean "I know how you feel", I don't and can't because I am not you.
I'm very encouraged by the fact that you seem to be able to do those 'daily stretches'. My Jenny, who had more severe underlying problems, simply wasn't capable of them and it suggests to me a degree of CP that can at least be worked with. I am hopeful, anyway.
Our excellent @Richard_Scope has CP himself and is a highly intelligent, capable and indispensable member of the Scope team.
In my experience many, many mums become profoundly anxious that their child's condition has arisen because of some fault on mum's part. I have never known it to be the case. Do not blame or look to blame yourself. Bad and unpleasant things happen to good people. Sadly, that is life, but yours and Athion's life, and the lives of your family will progress and develop.
And you are not alone. I'm here, others are here, and you matter.
I hope all this makes some sense,
Warmest best wishes to you,
@JennysDad

Pippa_Alumni · December 2018

Hi @Athion, and a warm welcome to the community!

Thanks for sharing this with us. I'm glad to see you've had a chat and some great advice from @JennysDad, and you know where to find our CP Information Officer Richard, but do let us know if we can be of any further assistance.

Richard_Scope · December 2018

Hi @Athion

Great to meet you and thanks for getting in contact with us. I cannot confirm any diagnosis from the information that you have given because I am not medically trained. @JennysDad has offered some really great advice. We have further advice for Parents that will be useful for you. I live with Cerebral Palsy and would love to talk with you further if you think that would help

steve51 · December 2018

Hi @Athion

Good Afternoon it’s great to meet you today.

We have got some good info here on our site & I will post a link below for you to have a look at.

https://www.scope.org.uk/support/families/diagnosed

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=http%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies%2Fdiagnosis%2Fcerebral-palsy&index_url=http%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies%2Fdiagnosis%2Fcerebral-palsy&auth=OFTYVLlmVXM81poRjLw83g&profile=_default&type=FP

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2FSupport%2FFamilies%2Fbooks%2FJacob&index_url=https%3A%2F%2Fwww.scope.org.uk%2FSupport%2FFamilies%2Fbooks%2FJacob&auth=%2FMq0aMYNbUnvTjFByXlDOA&profile=_default&rank=1&query=Cp

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies%2Fdiagnosis%2Fcerebral-palsy&index_url=https%3A%2F%2Fwww.scope.org.uk%2Fsupport%2Ffamilies%2Fdiagnosis%2Fcerebral-palsy&auth=F5xQKGxy8DvkPSnRsYCGng&profile=_default&rank=2&query=Cp

Please come back to me if you require any further/info/advice?????

Hi, my name is Emma!

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