What kind of help and support will my son who has down syndrome receive?

[Effilump]

My baby is nine weeks old and I was wondering what kind of support he would receive from health professionals and support workers and such as this is all new to me, so any advice anyone could give would also be gratefully received! Thanks.

Hi- didn't want to leave you unanswered-My friends who have children with D.S have always been treated very well by health profs and schools etc- I know there are also good support groups out there -other people on this site will be able to give you info- good luck

Hi - and congratulations on the birth of your beautiful baby boy!!

My DD is now 8 months old and also has down syndrome. The support can vary depending on health issues, but you'll be pleased to hear that there is lots of support out there and everyone tends to be incredibly supportive. The main areas are:

Health:

Paediatrician consultants
Cardiologist (if needed)
Audiologist
Optician
GP

Development:

Therapists - Speech, Physio & Occupational
Portage
Educational psychologist

Plus there is always mumsnet which I've found to be a really great support for the everyday questions.

Please feel free to get in touch if you have any questions & have a great Christmas!

Hi Effilump, and congratulations!

Have you contacted the DS association? They have groups where you can meet up with others, have a coffee and chat, and also can give you access to lots of info for the future.

Congratulations. In addition to the other things posters have said may i be hardnosed and suggest You may want to look into benefits such as dla, carers and a disability premium on tax credits,

Thanks, I've had a look on the down syndrome website, thankfully my ds doesnt have any heart problems, so I know he doesnt need to see anyone about that.
I had one visit from my health visitor, but she wont be calling again she said, unless I ask her too. He's had a few appointments with the audiologists.
I have had a look at the dla forms, my god they look complicated, I'll tackle all that after christmas.
Happy Christmas to you all.

HI my son also has down syndrome and is nearly 10 yo. I think at 9 weeks proudmum has listed the majority. On top of those mentioned we also had a dietician, social worker and breathing/lung specialist.
Now we have the behaviour team, clinical psyc, psychatrist and education welfare officer as well. HTH x

Hi Effi, my DS2 will be one in Jan. He has Downs, as said above he has seen a paediatrician about three times and once in the child development clinic. He sees a Physio every six weeks and we have seen a speech therapist and an OT once. We have a social worker but she made it clear we didn't have to see her unless we wanted to, I hope she will help steer us through the school process. We applied for DLA but were turned down, although we are supposed to apply again when I can get round to it.

I can't believe it's nearly a year. It has gone so fast. I am going back to work and we have DS2 in daycare where they have an OT on site.

Please message me if you want to talk more.

Hi Totalchaos - do you mind me asking about the DLA? When DD was first born the health visitor mentioned that she would qualify, but her neo-natal says she was far too young and just needed the same care as any other baby. I don't suppose you know what age she may qualify (if at all) - she's currently 8 months old?

Many thanks

HI proudmum, my son has down syndrome and has received DLA from 3 months, HTH x

It does - thanks!! I'll have a look on the DS website for the forms. Thanks again & Merry Christmas x

Dla isnt to do with the age but needing extra care so all the apppointments, time doing physio etc type stuff time taken dealing with feeding problems etc and when you start seeing salt there will be more work for you to do at home on that eg if you start learning makaton

hey proudmum, you know all the people involved with your child, not every child has them, there's your starting point to show your child has more care than any other baby. HTH x