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CP Mum of daughter with gross motor delay

(2 Posts)
acciaccatura Fri 09-Feb-18 12:41:19

I am a first time mum with cerebral palsy - spastic diplegia. I limp but do not use a wheelchair. I get mistaken for drunk or drugged sometimes.

When DD was born she had feeding problems, which NHS were convinced was entirely my CP. After two tongue tie divisions (5 days NHS and 7.5 weeks privately) and a course of cranial osteopathy starting at 11 weeks all was resolved.

Now DD is a few days short of 9 months and I have booked her a GP appointment as instructed by our HV as she has hit 9 month red flag for gross motor - she is not yet sitting unaided. I actually thought she had hit a gross motor red flag at 6 months, so I have no issue with our HV or the need for an appointment.

I am worried about what other people will think/do. I was reported anonymously to SS for not feeding DD the day she turned 7 weeks, though the case was only open for a matter of hours, and a routine fortnightly weighing of DD by our HV proved she had gained 1lb 3oz in the fortnight leading up to the report. I think I know who did it and I have since been much more careful who might overhear when I talk about DD. Now I am limping around with DD who has a gross motor delay. Even our HV who was very good with the SS report suggested DD might have a bit of what I've got, then immediately tried to take it back again. I'm confident DD doesn't have CP, she continues to strengthen far ahead of where I was at her age, but behind her peer group.

Sitting unaided can be 'fudged' in public, but not crawling or standing or walking. What do I say if/when people comment? I've considered 'You're two steps behind our HV.' as a possible response, but really don't want to invite further comment. Do I just need to rearrange our social life to avoid specific people? Any suggestions or reassurance welcome. Thanks for reading.

TinklyLittleLaugh Thu 19-Jul-18 09:33:48

Are you absolutely confident your own diagnosis is correct and not hereditary OP? Hereditary stuff can often have a variable expression. One of my own kids has inherited my disability according to genetic testing but definitely "passes" and is streets ahead of where I ever was physically.

As for dealing with comments something like "Yeah the appropriate people are on to it," should shut them down. Remember most people are well intentioned but clumsy rather than malicious.

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