Advice about downs syndrome milestoness

[TheMauveHedgehog]

Hi,
Firstly I don't know if im on the right thread, every time I look up downs syndrome I can only find threads about people's screening results....

But anyway, my ten month old had a postnatal diagnosis of down syndrome (low risk, gorgeous pregnancy, and low chance results, 1 in a 1000 from the combined screening)

We had a very shocking start, he was born very poorly, had a period being NG fed etc. We were given a lot of info about what his developmental delay would be like and how much longer it would take him to do things than typical babies and what his limitations might be.

So I'm finding it very tricky that he currently is not delayed. He crawls, he babbles, he is self feeding with a spoon and eating a wide range of foods of all sorts of texture. He was rolling at 4 months, sitting at 7. We just had his report from his 9 month pediatrician appointment and he was assessed at being at 8-10 months at all areas of development, which considering he spent a month in NICU and had a cold when he was assessed couldn't be much more spot on average even for a typically developing baby.

So I guess what I'm asking is from parents who have been here, when and in what form may the delays start to develop? Will his development just slow down? Will he lose skills? Will there be some things he just can't do?

I have been advised to do DLA, but don't know what I would put in it as all the evidence says he is doing well. We do do daily speech and physical therapy, so we are working hard on our early intervention and he is very small (below 2nd percentile weight on a typical baby growth chart) and you can see the features of down syndrome in his face, but I just feel so confused. I was mentally and emotionally adjusting to having a disabled child, but when we interact with babies with down syndrome he is having a much smoother pathway than them. He doesn't ',feel' like a baby with a disability to me. Yet I still feel we aren't the same as families with typically developing children.

In people's experience do babies with down syndrome who start life developing on par with their peers tend to have less of a learning disability as they get older? Or is it far too individual to say? I know we can never predict anything for any child, but I don't want to underestimate my little boy.

Thank you for any thoughts

I can’t help with what the future may hold, I’m afraid, except to say everyone is different so there won’t be one path all follow.

But definitely apply for DLA. You have nothing to lose other than the time it takes to complete the form. DLA is based on care needs in excess of what you would expect for a typical peer of the same age. Typical peers don’t need SALT or physio. Include any other early intervention you are doing. Other examples are things like does DS take any regular medication? Even if he is self feeding, does he take longer to feed than is typical? Cerebra and Down’s Syndrome Association have guides you may find helpful. If you aren’t successful, you can appeal &/or try again when DS is older.

Thank you. Yes that all makes sense. He's my first baby, so I don't really know what 'typical' looks like, but like you say we do do a lot of extra things to support his development. Its just I was expecting him to be so different to the other babies around him, and honestly apart from being on the smaller side, at the moment he is very much aligned with his peers (and doesn't need any medication or extra supports etc, all the intervention we do is for any future needs as they may develop,). He's not racing ahead like some of the little ones I see starting to try and walk already, but he's not an outlier. I guess it's unusual to know your baby will have a learning disability before you see the materialization of it, as normally it works the other way around.

Thank you for the advice