comments about special needs kids

[Adanma]

Okay, I just need to get a few things off my chest. I am currently ttc #3 so I read a lot on the forums for that. I also have a 5.5 year old son who has Asperger's and a neurotypical 3 year old son. I understand that people hope and dream for perfect children. I understand that, and I felt that my first pregnancies, and I feel it now ttc #3. However, it makes my blood boil when people say things like they are actively trying to have a girl because there are more boys with autism. That goes beyond hoping for a healthy baby and into the realm of designer babies and eugenics. When I was pregnant with Ian (AS) did I touch my belly and think of how great it would be when he wouldn't make eye contact with me? No. Did I dream of the day we would be stopped in the mall because he was having a meltdown that was so bad it looked like we were kidnapping him? No. But I can tell you this: I knew as soon as I knew I was pregnant that no matter what condition my child was in when he was born, I wanted him. And he is my pride and joy. And it's hurtful when people are terrified they'll have a child like yours.

Adanma

 

[JASMAK]

I hear ya!!! My daughter has autism, and people always comment to me...well, thank God she is a girl, because if she was a boy, it might have been worse! WTF? Then when I found out this one was a girl, people would say that was great because boys have autism more. My son doesn't have autism...so that doesn't even work in my family anyways, but HOW RUDE, right? Some have even said that it would be great if I now had a "normal" daughter. What is wrong with people??? Do people think I am trying to REPLACE my daughter??? People are just really ignorant.

 

[MrsRabbit]

DS does not have Autism - he does however have sensory processing disorder and most likely OCD as well as asthma, allergies etc. When we got pregnant with our daughter - people made comments about how we shouldn't have had her. Even more so when she began having similar health issues as her brother.

Who is anyone else to say our children are less than theirs? That they cannot live completely happy lives and contribute positively to the world around them.

I've never been normal - normal is so boring.

 

[aob1013]

Some people don't know how lucky they are hun xxxxxx

 

[fairydreams]

My dd was born prem and we have had the HV involved a lot recently as there has been issues such as her speach which she has therapy for and she has to take an inhaler for in the morning and evening and we have to carry one with us everywhere just in case. she also has the hayfever, eczema to go with it too but my main concern was her frustration, she has flipped out a couple of times in nursery because she cant communicate properly because her speach isnt mature enough yet, she gets confused and angry when people dont understand her so she then has the temper issue that the teachers have to deal with.
I was told when she goes up to reception in September that she will be monitored by the special needs team to which I didnt think nothing of, mentioned it in passing to my family and I can not believe how ignorant they are just because them two words have been mentioned! I know exactly how you feel hunni, she's still the same princess I fell in love with.

fairydreams

 

[MUMOF5]

My son has autism and i have had two other babies since him, when i was pregnant people would say to me "Are you hoping its a girl so theres less chance of it having autism?" Why would you even ask someone such a personal and insensitive question?!!. If all six of my children were autistic i wouldnt change a single one of them. Its not the easiest life for them or us as parents but its not like they have a life threatening disease, there are a lot of children far worse off. xx

 

[Midnight_Fairy]

People say to me silly things. They obviously have no clue about my life and I have now got a thick skin. I just think the ones making comments are the ones insecure about their own parenting ability's

 

[stephwiggy]

i hope no one minds me posting here - you children will always be the apple of your eye and we pray for heath and happyness for our children - but they are our children and altho milestones may be different they are so rewarding. whilst i do not have a disblaed child i have worked with disabled/special needs children for years, and i myself have a disability.

i wanted to wish you all well xx

 

[Adanma]

Thank you everyone for commenting. It makes me feel better knowing there are other mom's going through the same stuff. Mrs Rabbit: my son has SPD, ADHD, and a tic disorder as well. The sensory stuff is what he has the most trouble with. We've just gotten him comfortable with getting water on himself. (imagine bath time eh?) But he's been in the pool and everything this summer. It's a constant uphill battle, but like mumof5 said even if they were all autistic, I wouldn't change them for anything. Thanks again ladies for your support.

Adanma

 

[Lottie86]

I had someone stop and ask me what was up with Findlay when they saw his feeding pump. I explained about his problems and they told me that they had had a medical termination at 23.5 weeks as they found out their baby had a chromosome abnormality and were told it could have all sorts of issues that go along with the rare chromosome abnormalities and that they had been struggling to come to terms with the decision they had made.

Of course I felt instant sympathy for them as that must have been a horrendous situation to be in (we didn't know about Findlay's issues during pregnancy) however she then said "having met your little boy I now know we made the right decision as I couldn't have put my daughter through all of that". I'm glad in a way if meeting Findlay has helped her come to terms with things more but boy did that comment hurt!!!

 

[Adanma]

lottie: whoa! I would have bitch slapped her! I don't care how hard of a decision it was! All she saw was the feeding tube and the problems. She couldn't see the child past that? I'm glad women have a choice when it comes to things like that, but it makes me shudder to think about such a late termination. It makes me think of my cousin Colin. My aunt had so many miscarriages. She finally adopted my cousin Renee, and two years later found out she was pregnant. She got a God awful throat infection which they wouldn't treat because she was so early in pregnancy. Well it got to the point where she needed IV antibiotics. Anyway, she went for an ultrasound and they saw he had hydrocephaly (water in the brain cavity)and a portion of the brain wasn't there at all. They were told he would never, walk, talk, see, eat on his own, etc and if she chose to have him he would need to be institutionalised. SHe chose to have him and raise him. He is in high school now on grade level. He reads and writes with a highly magnified computer screen. He walks with a walker. He talks. He's an amazing boy. It's this story that made me certain I could never terminate because of problems. Doctors don't know everything. I'm sorry she had to go through that hard choice, but how can you look at someone and their child and say you're glad you killed yours instead of having one like that?!

Adanma

 

[MUMOF5]

I had someone stop and ask me what was up with Findlay when they saw his feeding pump. I explained about his problems and they told me that they had had a medical termination at 23.5 weeks as they found out their baby had a chromosome abnormality and were told it could have all sorts of issues that go along with the rare chromosome abnormalities and that they had been struggling to come to terms with the decision they had made.

Of course I felt instant sympathy for them as that must have been a horrendous situation to be in (we didn't know about Findlay's issues during pregnancy) however she then said "having met your little boy I now know we made the right decision as I couldn't have put my daughter through all of that". I'm glad in a way if meeting Findlay has helped her come to terms with things more but boy did that comment hurt!!!

. What an insensitive comment, id have been hurt too. xx

 

[midori1999]

I know how you feel. My son has Downs Syndrome and I constantly come across threads on boards like this about women terrified their child might have Downs or who are terminating because their child has Downs. (90% of women who find out their baby has Downs whilst still pregnant choose to terminate) I also hate it when women say it wouldn't be fair on their other children if they had a baby with Downs.

I am all for women making their own choices, but it makes me feel physically sick, especially as I know that Downs seems like such a 'monster' until your child has it, then it simply becomes a genetic condition your child happens to have. My son is such an individual, Downs is only a part of who he is, but it is a part of who he is and I wouldn't change him for the world.

 

[Adanma]

Midori: I have a cousin with downs and it always bothers me when people choose to terminate because of that. Patrick is such a wonderful boy and talk about smart!

Adanma

 

[Midnight_Fairy]

I find it sad when people say oh I am sorry, as if your child's disability is a curse! I feel privileged to have my son to be honest...not burdened x

 

[JASMAK]

I find it sad when people say oh I am sorry, as if your child's disability is a curse! I feel privileged to have my son to be honest...not burdened x

Yes! I had one lady say to me "what a shame" when she learned she had autism. WTF?!

 

[DanielleM]

Hi ladies have not posted in this section before (only just come across it) but I have a son who has cerebral palsy and he uses both a wheelchair and a kaye walker, thankfully he is very up to speed intellecutally and it is mainly his legs that are affected but I can sympathize with you all about the stares and people saying 'ah isnt he doing well', and I know they are trying to be nice but how on earth do you know what he was like before??? It is them pitying looks what really get to me as my son Evan will be 6 next week and will begin to realise that people are feeling sorry for him- he doesnt need their pity!!!
And Lottie86 I cant believe somebody could make such a hurtful comment about your son, I am actually speechless.
The most hurtful comment I received actually came from Evan's biological father who left when I was pregnant then come back when he was 4 and left again after 6 months claiming that he was ashamed and embarrassed by his own son- his loss I say!!
Evan has been brought up by my current partner from the age of 2 and calls him dad, he actually cant remember the 'man' that come back for 6 months or he never mentions him and neither do I!!! Now we have another one on the way to complete our little family and yes I am very nervous about the health of this baby but whatever will be will be!!!

 

[Tegans Mama]

I understand completely, our daughters extra needs are entirely physical and becoming quite obvious as she gets older. It irritates me so much when people say they're sorry she is the way she is..... Why??? I'm not sorry, she was both this way and this is the way G-d made her.

 

[Lottie86]

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.

 

[Lottie86]

lottie: whoa! I would have bitch slapped her! I don't care how hard of a decision it was!

I try not to judge people as I have no idea if I would have made the same decision she had made had I known about Findlay before he was born and tbh I am not 100% sure what I would do if I was faced with the same situation again (as in a future pregnancy they would do a cvs/amnio to check for this particular chromosome abnormality as it isn't one checked for on a normal cvs/amnio) and I am sure the lady didn't mean to upset me.

Admittedly if she hadn't told me about her baby and had just said something along the lines of 'I'd have got rid of him' I'd have been fuming with her.