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Additional Support Needs & DAS Help & advice |
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26 Oct 16, 06:19 PM |
#31
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Imagineer
Join Date: Apr 05
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I have a few close friends who have children with DS, my son has a unique chromosome disorder, so I became friends with these ladies through our children.
My friends children are 15 and 16 years old and they all are wonderful young women and men. Life hasn't been easy and you do learn to have a big voice and stand up for what you feel is best for your child. Two of the children attend mainstream school and the other 2 go to a special school. I home educate my son as school isn't something for him. I have 2 older children and I feel having a special needs sibling has taught them compassion and opened their eyes in understanding that everyone is different. So much so that my daughter is a nurse and my son works for Hampshire autistic society with adults. Life will be full of struggles but it will also be filled with so much more. I love all my children but having Teddy (my son) is an all consuming utter love and joy. There's a new show on Lifetime tv, called Born this way, about young adults with DS, I've watched the first 2 episodes and it makes me smile all the time. Good luck with everything and if you need a chat please feel free to pm me.
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EMMA |
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26 Oct 16, 08:28 PM |
#32
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Apprentice Imagineer
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Sorry if I'm being to nosey, you can tell me to ≈≈≈≈≈≈ of if you would rather not answer lol but what chromosome disorder does your son have? Mine has one to x
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DisneyMadMummy |
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26 Oct 16, 08:38 PM |
#33
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VIP Dibber
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26 Oct 16, 08:50 PM |
#34
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slightly serious Dibber
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Firstly Congratulations on baby number 2'x
I have no direct advice just to say you sound a wonderful Mummy and your little ones are in safe hands x Good luck for the future and there is lots of friendly support on here as always xx much love x
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15 years of Florida Trips. Lots of villa's, Bahama Bay Resort, Royal Pacific Resort, Celebration Hotel, WDW Swan, Naples, Marco Island, Sarasota, Clearwater. Onsite next for the first time - Wilderness Lodge |
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26 Oct 16, 09:28 PM |
#35
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Imagineer
Join Date: Mar 15
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Huge congratulations on your pregnancy.
I have had experience caring for both children and adults with DS on and off for the past 26 years. You are mourning the child you dreamt of and coming to terms with the unexpected, so don't feel guilty and just give yourselves time. I really recommend following Olli and Cameron on FB. They are gorgeous twins with DS and have an amazing Mummy who is so positive. Good luck and hugs xx |
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26 Oct 16, 09:36 PM |
#36
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Imagineer
Join Date: Apr 05
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He has a deletion on one of his 13th chromosome and some unknown additional material attached to the end. It reads as 13q32-34 deletion with additional material.
What does your child have x
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EMMA |
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26 Oct 16, 09:51 PM |
#37
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slightly serious Dibber
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As others have said I can't think of a more lovely family for this baby to be born into and how lucky this baby is. you will adapt and cope and this life will enrich yours and masons in ways that you probably are not thinking of at the moment. We had a ds baby in my sons baby sensory class and she was the absolute apple of everyone's eye, and we have family friends who have three children all grown up and the eldest was ds, she has leads a completely full and happy life, has her own apartment, works at a garden centre and has the best sense of humour, she's a delight. I hope you get the help and support you need before the birth, and I hope you all finally get off on that trip to Florida next year xx
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Sept 2018-POP Century Sept 2017- first stay onsite Oct 2016-LBV-Freddie's first trip at 19 months June/July 2011 TLV, Nov/Dec 2011 LBV May/June 2001 RPM, Sept 2005 BWL |
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27 Oct 16, 07:29 AM |
#38
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Apprentice Imagineer
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He has 8p23.1 duplication syndrome but the geneticist thinks there is more to it then that so wants to investigate further x
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DisneyMadMummy |
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27 Oct 16, 08:15 AM |
#39
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Excited about Disney
Join Date: Mar 10
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Congratulations on your pregnancy. I would just like to agree wholeheartedly with a couple of the other posters here. My son had a high risk of DS but didn't have it - he did have a heart defect and several other issues though. The worst part of it all is not knowing - not knowing what the future will bring and what problems (medically and otherwise) you will have to face. I found pregnancy really hard, we knew he had a heart defect from about 16 weeks of pregnancy and later found out he had a kidney issue too so I was just waiting to see if he had anything else and it was horrid - I had many sleepless nights.
But as PP have said - time passes and although you initially grieve for the baby you thought you would have you also celebrate the baby you do have and get used to a new 'normal' - just a different normal to the one you initially anticipated. Good luck with the heart scan
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Ann x |
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27 Oct 16, 04:39 PM |
#40
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Very Serious Dibber
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My ds1 (6yrs) has autism and I have a good friend who has a son with DS they were aware before he was born. He is 11 now and while he has had a few health complications he is the most lovey outgoing kid! Please try not to worry it's one of the best things that has ever happened to me having a child with special needs, it brings you the most amazing love and bond with your baby. Try to relax and enjoy you pregnancy because as I well know life with 2 kids under 3yrs is the most rewarding and tiring thing in the world 😘
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Jennifer |
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