New mum to my lovely daughter Freya who has DS, advice on milestones needed.

[KellyHayes1983]

Hello All

My name is Kelly and I am 26 years old. I have one daughter called Freya who is now 15wks old and has DS. We didn't know that she had DS and was given like so many of you a very small chance at 1:5453.

I felt extremely unlucky that things had turned out this way and have struggled to cope with the mixture of feelings involved. Complete love and adoration but also despair and disappointment. Certainly not how I ever anticipated feeling when I had my first child.

Things are settling down now, Freya has an ASD and an AVSD and so is likely to need surgery later in the year. That news was difficult to hear, let alone digest. We have quite a lot of appointments every week but they are slowly fizzling out allowing us to start to begin to live normally (whatever that is).

I know they give you all the government booklets regarding DS that have milestone tables in but was looking for other parents experiences. Freya has always been extremely active, she rolled onto her side at 8wks, rolled over 10wks, spins around 360 degrees at 10wks and now at 15wks manages to wiggle her way out of her rubber ring!!

As far as I can tell this is unusual, my health visitor is astonished. I took NCT antenatal classes which were brilliant, I made some fantastic friends and we meet up every week. The babies differ in age upto 4wks older than Freya and she is the most active.

My impression of DS is that this generally doesn't happen, I am aware that there is a very large range of DS and that its hard to categorize. For this reason doctors are very reluctant to speculate about Freya's future potential which, is frustrating.

Has anyone else experienced similar?

Has anyone got any advice on coping with DS, weaning, childcare?

Anything in particular that seems to have had a positive affect on your little nippers?

Any help that anyone can give will be appreciated, when I figure out how to post pictures, I'll put some hilarious ones of Freya escaping from her rubber ring up )

just wanted to say hi - we attended an sn group with several children with ds (my dd2 has cp) and they varied enormously in reaching milestones - some were bang on the norm, some much later. a bit like kids with cp really!

congrats on your lovely daughter - she sounds like a star .

we found that (just like nt kids) sn kids pretty much set their own timetables - they haven't read the books that tell them when they are supposed to miss reach their milestones, and trying to predict it is the way madness lies.

throw away the crystal ball and enjoy what she is doing, whenever she does it - it's a hard concept to get to grips with, particularly when every specialist/ therapist you see is obsessed by what they are doing, and when they are doing it, but she sounds as though she is doing well.

hopefully someone with specific ds knowledge will be along. (agree that generally professionals opt for one of two options 'wait and see' or 'doom and gloom'. we were told dd2 wouldn't walk or talk - she does ballet, skis, and i can't shut her up... this medical 'science' lark turns out not to be too scientific after all)

best wishes to you and yours for the upcoming surgeries, and congrats again on the birth of your lovely daughter. x

Hello,

my son has DS and he is 5. When he was born he did really well and is continuing to do so. He walked at 17months and he can now run away as fast as he likes (lol). I agree with NickOfTime, just enjoy the fact she is your baby and all the lovely things she is doing. It is good to meet other families with older children so you can get an idea of what might be involved later on. Don't rush, give yourself time to get to know her and maybe check out if there is a local group for families with children with DS. Contact the DSA and they should be able to point you in the right direction. Congratulations on the birth of your daughter, is she your first? I got to a point with intervention and worrying about targets that I would get annoyed that he was seen as his syndrome by all the professionals and not as an individual with his own set of needs and his own agenda. I still struggle to deal with all the forms which seem to reduce him to a long list of issues rather than my son who is rather brilliant. Anyway, ramble over. Well done and keep going!

She sounds like she's doing very well. It's probably good that the doctor's aren't speculating because when they do they seem only able to be terribly negative!! My son doesn't have DS, he has autism - his condition is severe but despite that he does a lot more than the speculations we received in the early days. He has a very active and fulfilled life (surfs, swims, horse rides, climbs etc etc).

Would love the see the photos - she sounds adorable!

Hi, I have a DS who is six months and he has Downs Syndrome. I know what it is like to want to know to what 'degree' they will have learning difficulties. It is very hard to tell just from looking at him that my DS has Downs, and I asked his paed did this have any relation to the level of learning diff he would have she said that it wasn't until he began to talk/communicate that it would be possible to ascertain this. She did say to treat him the same as our other child and give him as much stimulation as possible.

Try to contact some other mums of children of the same age if you can. I did go to our local support group but TBH found seeing the older children a bit overwhelming.

Hi Kelly,
Congratulations on your baby Freya - lovely name BTW!

Must have been a real rollercoster for you the last few months - so much to take on board. Sounds like you and she are doing brilliantly.

My DD was born starved of oxygen and has a brain injury. Like you it was a complete shock and has taken some time to adjust to her difficulties - it is such a waiting game. However, she is utterly amazing and surprises us every day

Hi, Freya sounds lovely. My 3 year old dd has DS and has always had very good motor skills too. She rolled over at 17 weeks, sat up independently at 7 mths, crawled at 10mths, could stand at around 12 months and walked independently at 16 months. At 3 she can climb anything i.e. stairs, tables, chairs, ladders (to go up slides!) etc.

I didn't have any problems weaning her, she has fully self fed for a long time and has no issues with textures she is fussy but not really much different to any other toddler I know.

Our biggest delay has been dd's speech, at 3 year she has around 10 words, but she communicates very well with sign language, or if that fails grabbing my hand and dragging me to whatever she wants and pointing! I would recommend you taking a Signalong or Makaton course, it has really helped dd to communicate.

It is hard not knowing what your childs future prognosis will be. I remember when dd was a baby I was always trying to glean information from professionals about what they thought she might be like when she is older. I still do it now to a certain extent really. But you do learn to relax into it and take things as they come.