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Struggling

(4 Posts)
Coffeeforme28 Fri 17-Nov-17 22:41:10

Hello. Sorry for the long post. Just looking for support and for anyone who may have had a similar experience.
My 16 month old DD has recently been seen by a paediatrician for what is being called developmental delay. She is due to undergo various blood tests, x rays and an MRI at the beginning of next year. She is massively behind on her gross motor skills. Sits up but cannot sit up unaided from the floor. She only really got the hang of her sitting balance after her first birthday to the point I felt I could take cushions away. She rolled from front to back at 7 months and has only just rolled from back to front. Other than that she does not move, bottom shuffle, crawl, pull up etc. She will bear weight but is very unsteady around the middle. Her leg strength seems good. She is currently receiving physio who has said that there is 'no good reason' why she shouldn't be moving.
After her first birthday she started to regress in language and social skills. She used to clap, wave, had great eye contact and said DaDa, Mama and bye bye. She has never ponted. She now rarely looks at anyone in the eye and only says Mam consistently. Has said Dada once in 4 months and it was in context. She has just started clapping again after 4 months. So we are also concerned about ASD. DD also displays movments which could be stimming. She does not really play with toys. Just mouths and/or throws them. I try and teach her games and and read/play with her but most of the time she doesn't seem to notice I am there.
I am struggling massively with waiting for a diagnosis and I know there is a possibility that we might not get anything definitive. I live away from family and friends. I have a few newer mum friends locally but struggle to be around them as their babies are so much more advanced. I live in the small town where my DH is from and people are always stopping me in the street and asking things like 'is she walking' and 'I bet she is into everything'. They try to get her attention and she just looks straight past them. It breaks my heart. She used to be such a bright and sociable baby and people don't seem to understand what's happened to her. I don't know what to tell them as to be honest, I don't know what's happened either. I just feel like I have lost the baby she once was.
I cry every day and feel like I have failed her in some way. My DH won't tell his family as he doesn't want to stress out his mum who has poor health. I feel so alone in this. I just want to move back to the city I am from so I can have a support network but my DH won't hear it. DH works a 60 hour week and helps when he can but he has no idea how lonely things can get even though I have tried to explain and broken down numerous times. I just feel so lost and don't know what to do to help my DD other than keep trying to engage her. We have an opportunity to see a private speech therapist while we are waiting for NHS so I am hoping that helps. Any words of support or similar experiences would be much appreciated. Thank you.

Charolais Wed 29-Nov-17 05:37:03

I’m very sorry you are going through all this. I wish I could help somehow. Hopefully someone will comment here who has some experience with this sort of thing. Hang in there.

MrsEddieP Thu 30-Nov-17 23:53:45

Hi Coffee. My DD is 15 months and at a very similar stage to yours in terms of gross motor skills and speech. We do know she has low muscle tone and she’s due to have an MRI and blood tests later this month to investigate the underlying cause.
I know what you mean about finding it difficult to be around other other children the same age and I often struggle to hold back the tears in baby groups. I think it’s because you become so aware of what your child can’t do, instead of focusing on what they can, but I’m persevering as I don’t want to her to miss out on social activities just because they can be difficult for me.
I’m sorry to hear you feel so isolated. I do think that if you can find a simple form of words to explain the situation it will become easier the more people you tell (easier said than done I know!).
Do you see your DH’s family much? I wonder if they might have noticed something is going on and feel reassured to know she’s getting specialist help.
I also think you should take up the private SALT if that’s an option. We started private physio while waiting for NHS and I think you do feel better knowing you are doing something. It costs a fortune but there’s nothing we’d rather spend the money on.
Anyway, I’m still very new to this situation so hopefully someone with more experience will be along to give some advice, but I just wanted to say that I know how you feel. Hope you get some answers for your DD soon. x

user1471134011 Thu 28-Dec-17 23:22:03

Coffee does your LA have a Portage/Specialist teacher service? Might be worth exploring if there are local groups for parents in your area?

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