Should I tell people my 15 month old son has down syndrome, even though no one can tell by looking at him?

Question

He is deveopmentally delayed, and people ask me all the time if he is walking or crawling. I say no, and sometimes explain. I don't want to sound like I'm asking for pitty, even though we have been through a lot with him already.

Answer 1

I know exactly how you feel. My daughter has Mosaic Down Syndrome and she doesnt look like she has Down Syndrome either. She is 12 years old now and I still feel the need to explain sometimes. Ive gotten to the point that I feel that I am a Down Syndrome advocate of sorts. I point out all the good things my daughter can do and what a great kid she is etc..I do let people know that she has Down Syndrome so they can put an actual child with the condition. Especially since most people go through life without the benefit of knowing such an individual.

Answer 2

My son also has DS, and he will be 4 in August. Like your child his DS features are not apparent. I am often asked by other DS parents if he is Mosaic. Anyway - I struggled with that for awhile as well. Not only was he not doing what other babies and toddlers his age were doing, but he was so much smaller than other "typical" kids, that people often assumed he was much younger.

What most often happened is that someone would compliment me about him in some way, then ask how old he was. There was always a look of surprise when I revealed his age, and inevitably they'd say, "Oh he's so small" or whatever. I would say, "Yes, but among kids with Down Syndrome he's actually average size. " This would give them the opportunity to ask questions, which I am always thrilled to answer, or to stop talking to me altogether. 95% of the time people would say "Really? He doesn't look like he has DS. Does he have a mild case?" That gave me the opportunity to share a little about DS, educate others a little, and to show how proud of my son I feel all at the same time.

So, yes. Bring it up. It is very cathartic to be able to talk with parents of "typical" kids, to show off our beautiful babies for what they are: beautiful babies like everyone else's, and to know you've been able to combat some of the misinformation out there.

Answer 3

Unfortunately, nosy people seem to be reproducing like rabbits these days! I suppose they are probably just trying to initiate small talk or be friendly. However, the irony is every time they ask you such questions they remind you that your son is different. Or perhaps they remind you of the challenges you have faced regarding his health.

If you are inclined to reply you could say, "He has some personal health issues." Hopefully, people will get the hint that you don't want to share your son's medical history as small talk. If not, reminding them, "It's private," may help. If not, walk away. I offer this because I could see this getting tiresome over the years, and really it's nobodys business. Caregivers, family, and your friends will know because they are part of you and your son's life. Have you heard about Exceptional Parents Unlimited? Their link is below. Maybe they can help you with your challenges? Take care.

Answer 4

it depends on your mood i guess.my son is 3 & people can tell by looking@ him &usually comment on it ,by saying my 'so&so' has downs bla blabla.it would hurt my feelings @ first bcause we thought his characteristics werent that strong.as time went by we didnt care because he was doing so well.he is a little behind on speech but were catching up.i remember being in a shoe store w/my hubby &the baby was in a carrier & a stranger was in admiring the baby & my husband told her how he was on life support & we almost lost him & he has downs. i was upset.i understand it was his way of dealing w/it,but it was far from my way.so it is really up to you,some people may feel awkward or say something unintentionally ignorant,so it just depends on your day---it was 3yrs ago this past june &i have my good days &bad days --if u dont want to sound like ur asking 4 pity just use a tone of voice that says ---yeah he has downs,but we are so in love w/ him we dont care.my friend was here today-ironically her 20 mth has downs also & he just started crawling when he got glasses-so if he hasnt had an eye exam do it real soon-its not too early.dont get discouraged he'll do it ,dont worry too much about how you sound ----give your son a voice --educate .God bless u both!

Answer 5

This is a long answer but I think it will make you feel better.

When I was a young boy, I had a very hard time hearing and I developed slowly. I had very poor hearing and everyone thought I was deaf. My close neighbors were starting to question weather or not I would be able to live on my own or not.

I recieved testing after testing untill I was 15 or 16 years old. It turned out I had a hearing comprehension problem. I could hear fine but actually deciphering what I heard was a problem. It is called Auditory Processing Difficulty. My mom fought long and hard for my rights for extended time on tests and other things as well. Unfortuantly the neighbors (who were very close) have passed but I just wish they could see me now.

I started getting into physics at a young age and by my senior year of highschool I was working at a University in Detroit (where I grew up) and published my own research in the field of Particle Physics. I plan to get a PhD. in physics and as it turns out I am smarter then most of the other students I go to school with.

I am now working at GM as an Engineer and I have done some pretty impressive work there as well. Only about 1%-2% of the students nationally that apply to GM as a co-op actually get in. I have worked very hard to get to where I am today.

This is comming from a 19 year old boy. I am going to one of the best schools for Engineering in michigan and I am going to transfer schools so that I can get my PhD. in Physics.

Just because he starts slow doesnt mean he will beat the crowd. He needs support from you, he needs encouragement. Dont be embarresed by your son, you should love him. My mother did nothing but throw every resource she had into me, she never stoped telling me how proud she was of me or how much she loved me. And I can not stress how far that will go with your child. Be proud! Your child will do great things one day! Just dont give up!

Answer 6

I don't think I would tell. I'm pretty sure I'd say something like, "Not yet! I mean, if you got to be carried around all day, would you bother getting around on your own?!?! haha"

There are going to be people who are sympathetic to you and your situation and there are going to be some who think they should pity you. It doesn't really matter.

You are, no doubt, an awesome mother. You could act like this is some great burden that's been placed on you but instead you're worrying about people pitying you. Hold your head up high and raise your son to be a loving, kind-hearted person like his mommy.

His milestones will come and you'll celebrate and all those people who bothered you with their questions will not even be a distant memory!

Be proud of yourself! Be proud of your son!
You love each other and you're giving him a great life!
Congratulations and God bless you!

Answer 7

My son is 15 month old (born 8 weeks early) & he doesn't walk yet either, it's no big deal for me. I understand how you feel about feeling like you have to explain the why's & how's etc... But I just don't because I feel like it isn't anyones business if my son walks or not.
There are progress & growth adjustments made for children with health needs & as long as his doctor & you have the understanding the your child is developing as he should under the curcumstances. I wish you & your son all the best.

Answer 8

u shouldnt feel bad about ur son's desease. if u dont want pitty from people, maybe its cause deep down inside u feel pitty or guilt in regards to him too...do whats best, learn to accept that ur baby is happy. dont look at it as a desease. down is part of his life, and he knows life only as a downs kid...to him, life is perfect, life is as natural as possible. people can think what they like, and if u must explain, do it descretely (do so to respect ur son's ever-growing integrity). if u need to explain everytime and have to go thru the ackward questions and pitty faces, just think thatone day ur son may feel like people are looking down on him, or pittying him, even if he doesnt understand why. remember, to him life is beautiful...to him theres no such thing as down syndrome...do ur research and learn how to live a healthy normal life with it...dont let his disease be the center of everyones focus. let ur smiley, playful, breathtakingly wonderful son be the focus...and be happy...dont accept pitty from anyone...tell urself that hes ur little boy and u wouldnt love him more than u do now.

Answer 9

That is totally up to you. You should never feel you need to explain to anyone other than a caregiver or medical professional that may be caring for him. Your son is perfectly him and you be as proud as you can be. When they ask I would say "No but thank you for asking" and then change the subject. If they persist I would just ignore their questions if they are so small minded then rudeness may be the only way to shut them down.

Answer 10

Hi, I know what your going through. If they dont ask you dont have to say anything. my son has disablitys and no one can tell.
if people ask then I tell them the truth. its not asking for pitty. there are support groups for the parents too. I find some people more supportive and those who cant understand some are really mean.