#1
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I feel a bit cheecky posting this as Im fairly new and not offered advise much yet. I've had a really difficult time from end of last week so thought it was worth a try. Our daughter has globel developmental delay from a fairly rare genetic condition and seems to developing sign for communication ratherthan speechat present.
Right from the off all the grandparents have found it really difficult to deal with Anniee beingdifferent not that they love her any less itsthat they won't accept that she is different. She had a cleft how can you deny the hole in the top of someones mouth? They always say things like she'll be fine she'll walk she'll talk etc. which she might but we don't know anything for certain until she does it though and there are girls with tetrasomy who have profound and multiple needs. A major bone of contention at present is signing at 20 months annie has one speech sound which luckily for me mumum and she uses it aas a word. But she has about 15 makaton signs. None of the granparents sign with annie even tho we have shown them the key ones for annie and she is obviously using them! commentslike we know what she wants have been made. I have tried explaining how important it is for Annie but they don't seem to get it.
well without going into detail my husband made a comment to my parents last week about these sorts of issues and full blown family feud blew up in which i was caught in the middle. My husband now seems to believe it doesn't matter how we treat others we just need to make them do the right things for annie and get realistic about what she might or might not do!
Anyone had any similar issues or got any advice?
#2
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Familys are a real tricky one. Its finding the balance between getting them to "get it" and ending up rowing. I've had sooooooo many rows with my family its beyond funny. Its like they make you feel like your being over negative or something whereas really you just want them to understand your point. Have you thought about maybe giving them some reading material about your daughters condition, like what the future path might be etc. Might help them seeing it in black and white. Sometimes you do just have to tell it as it is but also explain how they're making you feel too. They might shout about it at first but I can guarantee it'll make them think. Maybe with makaton, tell them her doc says its important. At the end of the day you know her best and you want the best for her so they really should take note. Unfortunatly, some people are just ignorant to other peoples points of view, u can pick ur mates but not ur family Smile which is a damn shame in some instances Wink xx
#3
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Hi,

My son has severe speech delay thanks to low muscle tone and he Makatons very well, infact I think Mr Tumble is on continous loop here at home (If you look on the Makaton website under living with Makaton Finnley Kitchen is our wee man!) But families are funny things - and sometimes because they do not live with the children and see the benefits the signing gives and they easily brush it off, thinking that it is going to make them lazy, they miss that ti is a alternative communication building on speech and that it as a form of independence and again we had the "but we know what he means" debate.

Maybe send them to the Makaton homepage saying like Lucy did the Drs think its important and they can read it is not designed to replace speech but help it improve and expand vocabulary. All we did was kept plodding on with it and infact as he grew more confident with it they were the ones who were frightened they would not understand him and now they are all avid watchers of Mr Tumble!

Hope you can win them over - Makaton is the best thing to happen to us, and we would not be without it!
#4
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Hi there,

Sorry you are having such a tough time. I know from experience our parents tend to still be stuck in the old fashioned way of parenting and they don't like change.

When I wanted both sets of grandparents to do something to help/bring on my child I would put it to them that this is what the doctor/therapist/etc have insisted on and that you all have to do it if you want her to reach her potential. Put in this way, they will be more likely to listen to a doctor/therapist because in their day you never questioned them! Maybe even bringing one of them along to an appointment with the consultant will help so they can hear it straight from the horses mouth.

You didn't say how old your daughter is and when she was diagnosed. Maybe they are having trouble adapting to her diagnosis and subsequent difficulties and it sounds like they are in major denial. My mother-in-law was like this and I had to just let her be in the end, as this was her coping mechanism. She did eventually get there but it was hard for her.

Hope things improve for you, keep your chin up :-)
#5
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Hi Annie's Mummy
I had this same problem - my little fella was diagnosed with mild autism and low muscle tone. My dad was very understanding about it all but mum just used to say ' he'll be fine, he'll be fine' to the point where I once said 'no, mum he won't be - he's not like your other 5 grandsons, he's different and you're going to have to get used to it!' We didn't particularly have a fallout over it but my blow up made her realise that Jack needed something different to all the other boys in our family.

To help her understand Jack's condition I asked her to come to some of his appointments with me - not only did she hear the health pro's talking about Jack but she also met some other children who are that bit worse off than jack - think it was a bit of a wake up call for her. I also show her the letters we get from paeds, physios etc and she has also had a look through his 'development journal'.

The one thing Jack's Portage Lady said though that made me realise that mum was finding it difficult to accept is that parents don't want to see their children having to cope with anything other than 'the norm' (whatever that is!!) - 'their children' being us who are the parents of our little treasures - and us, learning to cope with whatever life throws at us!

It could be your mum is finding it difficult to accept that your daughter is different and your mum says these things in the hope that it makes you feel better - only it doesn't work does it! I'd really suggest that you show your parents all the health pros reports and take your mum with you to the next appt - she'll start to understand - unfortunately, you'll just have to summon all the patience you can while it happens. Lots of luck - let us know what happens. Keep smiling!! xx


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