comments about special needs kids

[DanielleM]

It's such a shame that these people can only see our children's equipment and disabilities rather than their gorgeous faces.

The other one that gets me is 'oh but he looks normal'. A lot of people don't seem to grasp that just because he looks like other babies (bar his gastrostomy tube) that he could have anything wrong with him. If he had a something like Down Syndrome and so looked slightly different to other babies I think people would be more understanding and not make so many rude comments but because his rare chromosome disorder doesn't seem to produce any distinct facial differences people think it's fair to make comments about him.

Don't get me started on the comments you get parking in a disabled space:

Them: either tutting at me or making comments to me about it being a disabled space not a parent and child space

Me: My son is disabled, he has a blue badge that is correctly displayed in the windscreen

Them: *peering at him* well he looks fine to me

Me:

They struggle to grasp the fact that he has bulky medical equipment that needs to be carried around with him and can need to be taken to hospital asap at times and so needs to be kept close to a car. Now you can guarantee when he is older if he needs a wheelchair these same people wouldn't dream of making comments like this although that is very sad in a way too as it means people can't see beyond someones wheels.

My son is 6 and has a wheelchair and I still get the tutting and disapproving looks when I park in disabled spaces, one woman even said to me that because I was pushing him in his wheelchair that I shouldn't be entitled to the space and she should!!! I kindly told her to f**k off!!! (pardon my french)!!!

 

[MrsRabbit]

That's stupid. I can barely get the kids out in a typical space if there is a mammoth SUV in the next spot it's even harder...I cannot imagine telling someone with a kid in a wheelchair they shouldn't use the spot.

 

[Midnight_Fairy]

I know people round here who found out I get DLA. Now, apparently I am not entitled (according to others) due to my son looking and seeming "normal" WTF get a life and stop interfering in mine lol. Its not easy to claim. You cant just make stuff up!

 

[Emmea12uk]

It's such a shame that these people can only see our children's equipment and disabilities rather than their gorgeous faces.

The other one that gets me is 'oh but he looks normal'. A lot of people don't seem to grasp that just because he looks like other babies (bar his gastrostomy tube) that he could have anything wrong with him. If he had a something like Down Syndrome and so looked slightly different to other babies I think people would be more understanding and not make so many rude comments but because his rare chromosome disorder doesn't seem to produce any distinct facial differences people think it's fair to make comments about him.

Don't get me started on the comments you get parking in a disabled space:

Them: either tutting at me or making comments to me about it being a disabled space not a parent and child space

Me: My son is disabled, he has a blue badge that is correctly displayed in the windscreen

Them: *peering at him* well he looks fine to me

Me:

They struggle to grasp the fact that he has bulky medical equipment that needs to be carried around with him and can need to be taken to hospital asap at times and so needs to be kept close to a car. Now you can guarantee when he is older if he needs a wheelchair these same people wouldn't dream of making comments like this although that is very sad in a way too as it means people can't see beyond someones wheels.

I agree with everything that has been said here. My son looks 'normal' and we get the blue badge quiz everytime we use it. Why should I tell them what is wrong with him? Why does he have to look disabled?

I am expecting number two and I don't put my hand on my belly and wish for anything. My boy may have so many different problems , but I don't see them. To me he is perfect. If the next child comes with it's own challenges then do be it. Every child who has special needs has a smile, a personality and capacity to love - I don't need more than that.

 

[Adanma]

You put that beautifully emmea.

Adanma

 

[nicola1076]

Hi I'm 27 I have a 4Year old who has Autism and also tm8 he was born premature at 27weeks. I can honestly say I would not change him for the world!

I have seen this section but I have previously chosen not to look on here due to the fact that I hate it when people say hurtful things like I wouldn't want a child with special needs or just stupid untrue facts about Autism. I even have had issues with family members too who when found out Jake had autism acted differently to him eg, asking him silly questions like how old are you?? or whats your name? GRRRRRR! I also have a second son who is 3 Joshua plus I am expecting our 3rd Boy in november. Yes I do have my hands full but mainly due to the fact Joshua has selective hearing and chooses not to listen to me yes Jake has daily melt downs but with his pecs and visual time tables they are not as bad as they could be. Having Jake has made my life so wonderful (and josh too) I have met a wonderful friend who also has a child with Autism (a girl) and I wouldn't change a thing! having a child with special needs doesn't have to be such a negative thing I just wish people would see that!

PS. I'm not worried that my 3rd baby will have autism to be honest I haven't really thought about it I'm just grateful to be expecting again

 

[Adanma]

Nicola: You know I used to think that people who were ignorant about autism etc were just dumb and didn't deserve such a special child anyway. I have come to realise though that they are simply ignorant.

It really does take having a child with special needs to understand the beauty of that situation. That said, there is never an excuse to treat a child differently once you find out. There is never an excuse to proclaim how glad you are your kid isn't like that. You can be ignorant and not knowledgeable about something and not be rude.

I used to shy away from this section too because i didn't want to hear that kind of stuff because I have a strong emotional response to it. I have found that that stuff doesn't really happen here. It's the OTHER sections you have to worry about! lol! And I like that I have found my voice and will educate people when they are ignorant like that.

Wishing you a happy, healthy, easy rest of your pregnancy!

Adanma

 

[ocean_pearl]

Hi girls, I dont have children yet but i work in early years looking after children with SEN especially autism. I find the comments you ladies have faced so ignorant!! I love the children i work with soo much, and they are all so individual and different and have their own little quirks just like all children.

My nephew has special needs and my sister has had the comments 'what a shame' 'but he looks normal' etc etc for years now. Its been hard but they're stronger for it.

And in regards to people wanting to have girls so there is less chance of autism, how stupid.I work with many girls with autism, some very high functioning and some very severe but they're such a joy to work with

 

[FlumpsMamma]

it makes me sick to know that people are so prejudice again children with needs, they cant help it and in my experience if you look past the needs of these beautiful children you will see their wonderful personalities and warm hearts. I do not have a disabled child but if the one i am carrying now had any problems i wouldnt think twice about keeping it the choice has already been made me and my otherhalf have already said we would never get rid of this child unless i was going to die, but if i could pick between me living and my child even if disabled id pick my child.
if my child is disabled and anyone says anything to me i know i will just brush it off because they cant understand, and generally people are scared of things they dont understand so they shun anything different.
so just stay strong ladies and ignore all the negativity its not worth getting upset over when you have such beautiful babies

 

[MrsRabbit]

I think God gave me a second special needs kid because he knew I could be a strong advocate for her thanks to all I learned with her brother. He picked me out of every woman on this planet to be mother to these kids and I am so thankful he thought I was worthy of them.

 

[Adanma]

MrsRabbit: I feel like that too! I have one autistic son and one neurotypical, but they are BOTH blessings and I feel so priveleged to be their mom!

Adanma

 

[ZannahRain]

As I read your comments I have to remind myself that I refuse to feel guilty for actually wishing my daughter did NOT have her condition. You see, she has been diagnosed with Leigh's Disease, a rare neurodegenerative disorder that has no cure and is terminal. If you took away that last part, I feel like I'd be right along with the rest of you and say I wouldn't change my child even if given the opportunity. But I don't see anything wrong in me wishing things were different so that I can always keep my baby.

I think one of the worst comments I've had came from her biological fathers (out of the picture and gladly replaced by my loving husband) step-mother, who had not seen my baby in over a year. We ran into her at Walmart one day and she asked how my daughter was doing. I explained that she had been regressing a lot more than normal and she was scheduled to get a Gtube placed because she could no longer eat anymore. She had the nerve to tell me that at least when she passes she won't be suffering anymore, then she gave me her number and said to call when there is a funeral.

My daughter is STILL ALIVE, and showing all signs that she doesn't plan on giving up easily. And another thing, she is NOT suffering. The closest she comes to suffering is being upset after a seizure, and getting pissy when she can't find the control to bring her thumb to her mouth. After she said this I felt physically sick. I just turned and walked away for fear that otherwise I would be arrested for beating her with the nearest canned product.

It's their loss. My daughter is an angel and a blessing.

 

[15.11.10]

As I read your comments I have to remind myself that I refuse to feel guilty for actually wishing my daughter did NOT have her condition. You see, she has been diagnosed with Leigh's Disease, a rare neurodegenerative disorder that has no cure and is terminal. If you took away that last part, I feel like I'd be right along with the rest of you and say I wouldn't change my child even if given the opportunity. But I don't see anything wrong in me wishing things were different so that I can always keep my baby.

I think one of the worst comments I've had came from her biological fathers (out of the picture and gladly replaced by my loving husband) step-mother, who had not seen my baby in over a year. We ran into her at Walmart one day and she asked how my daughter was doing. I explained that she had been regressing a lot more than normal and she was scheduled to get a Gtube placed because she could no longer eat anymore. She had the nerve to tell me that at least when she passes she won't be suffering anymore, then she gave me her number and said to call when there is a funeral.

My daughter is STILL ALIVE, and showing all signs that she doesn't plan on giving up easily. And another thing, she is NOT suffering. The closest she comes to suffering is being upset after a seizure, and getting pissy when she can't find the control to bring her thumb to her mouth. After she said this I felt physically sick. I just turned and walked away for fear that otherwise I would be arrested for beating her with the nearest canned product.

It's their loss. My daughter is an angel and a blessing.

That is the most insensitive thing iv ever heard... massive hugs to you and your little girl xxxxx

 

[Emmea12uk]

That is truely awful! What happened to "is there anything I can do to help?" or other kinds of support. I am horrified for you - that woman males me beyond speechless. Bless you for having the strength to walk away.

 

[Nathyrra]

That absolutely awful Zannahrain. There's only so far you can blame someones ignorance before what they say is just arsy and insensitive.

My son has Down Syndrome and he's the absolute light of my life. It does hurt when people on the pregnancy boards are wishing NOT to have a child like mine. I know that over 90% of people will terminate a child with T21. I think it's down to ignorance. Jeez, There isn't enough room on this page for me to list all the things my son brings to my life. I see the world differently, his arrival has bought our families closer together. Everyone absolutely dotes on him.

Loads of people have asked me if we're having a second child (one child is the norm in Germany) We were always going to have a second child but not because my son is invalid or something. It was a long hard road that brought me to this point but now everyday I thank the powers that be that my son was born to me, one extra chromosome and all!

 

[Annamor]

Some peopel dont know what they are missing out on...

A dissabeld child "sometimes" give the parent so much more back, their joy of life seems bigger to me.

But peopel are afriad they cant handle it.