Want an opinion about what you think is harder.

[sam's mum]

I want to get opinions from other people about this topic, but I don't want to cause offense asking the question. I have been thinking about how to phrase if for a few days and I hope that I do okay. If not, please forgive me.

My question is this - do you think that it is harder to cope with a child who has a physical disability, but is socially well adjusted and well behaved, or a child who is physically well, but is socially maladjusted and badly behaved?

My daughter has asperger's syndrome and this causes some horrific public behaviours (not to mention the stuff we cop at home). Onlookers see a child of 10 throwing a tantrum worthy of a three year old, but don't see the underlying condition. It is very emotionally draining to always be on the watch for what you say and how you say it - checking for how else it might be interpreted, worrying about new and stressful things that they may encounter and so on. But they are physically well and pain free, highly intelligent and doing well academically.

I miscarried a baby at 14 weeks two years ago and she had been diagnosed with many physical problems. We were still considering whether we even capable of having an abortion before getting to if we would have one, when she passed on her own. I thank God every day that the decision was taken from my hands because I didn't know how I would cope with two such very different highly needy children. I do believe that if my little girl had lived, that I would have coped - after all God doesn't ask us to do things that we aren't capable of.

Sometimes, in the early hours of the morning when I can't sleep, I wonder what life would have been like and which would be the more difficult. I am just hoping to get other people's perspectives so that hopefully I can lay some demons to rest and actually sleep through the night.

[marcelsmum]

Hi Sam's mum.

I know exactly what you are talking about my DS was diagnosed with moderate Autism at age 3, They have since "downgraded" his assesment to Aspergers, and he is reasonably well adjusted (considering everything). I have a close friend who has a 7year old daughter with Downes Syndrome.) When we go shopping and My DS has a tanti, I am looked at like I am a bad parent, but she is looked at like she is an angel (and people go out of their way to assist her and her DD).

She new in Eutro about her daughters condition and had several months to get used to the fact, before her daughter was born, whereas I had a perfectly normal birth and baby wih all 10 fingers and all 10 toes, only to be told when he was three that I would never have a "normal" child. It was completely heartbreaking.

I am now TTC #2 and I worry about having another disabled child and how I would cope (the media and their scare campains to do with Autism ADHD and Aspergers don't help.)

But I know the love I get from my DS is irriplaceable, and one look into his perfect big blue eyes and amazing smile and I know I would not change him for the world.

I think though that as far as people that do not personally know us go- they are going to understand a wellbehaved (or not) obviously disabled child, rather than the child that looks fine on the outside.
I guess in my opinion it doesn't matter what kind of disability a child has, It is going to be sometimes hard on the parents, but they are all wonderful in their own way.

[Lunar]

I think it is one of theose questions that cannot really be answered without the actual experience. My DD has Down syndrome and has no physical disability. I have many friends with childre who do have many physical disabilities and I think it is easier in some ways for them and hard in other ways. I feel there are hardships with both. On one hand a child in a wheelchair cannot run away from you and possibly injure themselves. But then again the child in the wheelchair will never walk.... am I making sense???
I think what you have been through has been very traumatic for you and you have to make peace with it some how. Many women miscarry early in pregnancy and have no reason, and the statistics are something like 1:3 miscarriages the baby has a chromosome disorder, and that does not count the various other disabilities that are not associated with the chromosomes.
I hope you find peace soon.
:hugs:

[gremily]

We are in the process of seeing pediatricians and a geneticist to determine whether DD2 has a 'problem' (not really quite sure what to call it as they have no idea!).
She looks slightly 'different' than normal and we've found her slower to learn things than she probably should.
All of my ultrasounds etc were fine and it wasn't until her birth that we were bombarded with 'she's very interesting looking' from a pediatrician.

She's 12 1/2 mths, and we have more tests and appointments to come, as they still are not sure what the prob is.

Before this I had never really thought about what life would be like with a disabled or badly behaved, as you put it, child. Our DD1 is a good natured, and above average with her reading, maths, sports, etc, so we never really had any major problems.

It's hard to put into words the thoughts of what the future will hold for her. I have an infinite amount of respect for parents with 'challenged' children. I think support from family/friends/Dr's is the key to a healthy relationship, with the child, your other children, and your DH/DP.

Getting over a miscarriage is a hard thing to cope with. Talking about it helps, and life ends up going on, iukwim.

Like lunar, I truly hope you find the peace you are searching for.:hugs:

[FOURtunate]

I also have a 10 year old DD who is an Aspie.

Please PM me if you want to chat!

I know how hard, and isolating it is.:gloomy:

[TigerBlueBear]

My 7yo son has NF1 and has ADHD. His behaviour is not normal and he has those terrible tantrums. When he is on his medication he is just a delight but as soon as it wears off it is like Jeckel and Hyde.

That said he does have some physical issues but none that really stop him from doing anything, but as a result of his problems he did go to SEDU for a couple of years before starting school.

There were children there who were severely disabled and their skills to do things were very minimal. I also worked briefly temp at a special school and the group I was placed with were some of the most disabled students. I can remember one boy I worked with who had severe brain damage of some sort (I don't think it was cerebral palsy but whatever it was he was in a wheel chair with little movement). My task while I was there was to teach him to put his socks on, it took us two weeks to get him to work out how to get his fingers into the socks and then another month after that to get him to be able to manoevre it down over his toes. I left shortly after that so I don't know if he was ever able to pull them up, but remembering that boy I know I would rather have a child like my Blue whose behaviour can be embaressing at times but who I know can enjoy so many things in life and who will probably be able to look after himself as an adult, than to have a child like that boy who can only watch the other children play and who will probably have to be cared for for his whole life.

[kiwibird27]

I am currently in hospital with my 3 month old baby (have been for 12 weeks) who has a rare genetic condition that will involve various life long developmental issues, the thing I have come to realise is that I am lucky cause my child won't be in any pain, or suffer,

Many of the Mums I meet have children in incredible pain, with no surgeries, or life expectancy , that simply have to sit and watch there children get sicker - medical treatments prolong there painful lives, and there is no simple out for them, another Mum was told, her 5 week old is a complete vegetable and will never develop further than she has now and will probably die within the first 6 months - but this baby still breathes, feeds and grows, but is totally brain dead!!!



i feel blessed when I talk to these amazing people because they still have hope of a miracle - even after being told to go home and wait for there child to die, I feel lucky to have a child that won't be in any pain, and the only issues will be my own predjudices and pain at not having a "Normal child"

I am writing this because it makes me feel lucky - compared to them, there are horrible things that happen to children everyday, luckily u only see them when you spent alot of time in hospital.

[kiwibird27]

[QUOTE=gremily;608469]We are in the process of seeing pediatricians and a geneticist to determine whether DD2 has a 'problem' (not really quite sure what to call it as they have no idea!).
She looks slightly 'different' than normal and we've found her slower to learn things than she probably should.
All of my ultrasounds etc were fine and it wasn't until her birth that we were bombarded with 'she's very interesting looking' from a pediatrician.



You will find strength to get through this - I can't tell you where it comes from but it does, once u have a diagnosis, whatever it is, it will make it easier to deal with, I am guessing we are at the same hospital , will pm you

[veve]

hmm interesting question .. I do hope no one takes offense to this thread- or the comments made in it ..

my response would be that both situations are 'workloads' of a different kind.. for although every child who has special needs should be adored and loved - the stress they can place on their family and specifically their parents can not be ignored...

with a physical impairment you have the physical drain - the lifting .. the physio.. the therapy....the showering .. the toileting .. and in some cases the feeding - I have done respite for families .. and their daily routine is the same day after day after day after day - which is fine for a week of respite .. but for 20 odd years??? or more - could drive you a little balmy ..

with an intellectual impairment you have many more social issues .. people outside the family just dont see the impairment - so when you are lining up at the checkout .. and the behaviours start .. people just see a negligent mother .. not a child with communiccation issues- which is MENTALLY taxing on the family ..

I dont know which situation I would prefer ... although a mother that I am really good friends with often says that she prefers her daughter (who is multiply impaired) - as she always knows where she is (no independent mobility ) and she knows what drugs she is taking :laughing: - so I guess as long as you stay positive .. you can laugh about any situation :D

xx
JEn

[becca022]

I have a son with a physical disability. He was born with Spina Bifida & we knew before he was born. Our day to day routine does get a little bit much but we know we have to do them regardless or he could get very sick in a year or so. He'll never walk, but at least we will always know excactly where he is at all times. For some reason he's also devolpmentally delayed too. What usually takes a "normal" baby not long to learn it takes Thomas aaaaages to do it. Or sometimes he'll do it once & not again for a few months. A week ago he rolled form his back to his tummy & now wont do it again. An intellectially disabled child who looks completely normal would also be hard to cope with because of the social problems & other people probably don't understand whats wrong.

[Can I?]

Sigh.....that's a really hard question.

I feel your pain on the ASD thing - my 4 year old has an ASD. He is bright and mostly happy but he has some odd behaviours and his speech is unusual. He looks 'normal' and people often just glare at me because he seems rude or is running away and ignoring me, or throwing a tantrum.

I love my son with all my heart, he is special and beautiful and so very smart, but I see the pain that autism causes him everyday, and I hate that. Yes it is a pain for me at times, and stops our family from doing things that we would otherwise enjoy together, but that fades into insignificance when compared to his mental struggle against himself.

At 4 years old he realises he is different and fights to be normal. He knows that some of his behaviours are unacceptable in public, so he holds them in and supresses his more active urges and ODD. Then he gets home and it all comes flooding out all at once in a huge stream of rage, or tears or overactivity. I can't imagine how he must feel at 4 knowing he has to be a different person when he is out with other kids. :crying::crying:

To be honest - there is suffering for special needs kids of all types, whether it be physical, mental or social. It all sucks and it all isn't fair and none of those kids (or their families) deserve it. I don't think there is a better or worse disability, they all cause stress and worry for parents and kids. Your daughters are both special and unique and the stresses and worries you would have had for each of them would have been different. I'm so very sorry for the loss of your little one.

[jaimmdee]

Just to jump in on this argument. I can only speak as a parent of a child with a physical disability as I don't have any other experience. I wanted to say that "physical disability" is a bit of a misnomer as it truly doesn't describe what the child/parent experiences. My son has moderate CP. He can't walk, sit unaided etc. He suffers from cramping due to his spasisty which is extremely painful. It also affects his bowels making him continuously constipated. It affects his lungs, making him supseptable to respiratory infections. It affects his swallowing & his speech but not his mind. Though he has trouble in communicating his thoughts. Its not only back breaking for the parents, frustrating for the child but also a financial strain on the family. Every piece of equipment we need costs thousands of dollars and funding isn't always available.

Having said all that, we love him to bits and wouldn't have it any other way.

[Jacks Mummy]

I think its draining from all angles, whether the child is physically impaired or mentally. Its a never ending battle to get help and understanding. Like the old saying "walk ten miles in my shoes".. It doesnt matter what is wrong whether it be physcial or mental its the fact that the help is not there and sometimes the support isnt there either. And that includes from family members. The cost is never ending and the light at the end of the tunnel just seems to get further away everyday. Also add on the way you feel, ie cheated out of having a normal child and feeling cheated because society is not as accepting as they make out and you have a big huge emotional rollar coaster that you just cannot get off. Yes there are good days and there are bad days but sometimes its hard to find that silver lining as it seems to just get hidden or be out of reach.

[schelty101]

Raising a child is really hard work for all, just wanted to say -screw what the people around you think -be it in the shopping centre or relatives etc all you can do is your best. Tantrums are normal for most kids and more frequent and worse for kids with "conditions"- so people can just live with it. All you have to be is a good loving parent and have their best interests at heart - we shouldn't worry what others think they never have the full story.
:flowerz:

[punkbaby]

I feel its hard both ways really and you cant really know what its like till you have experienced a certain disabilty to know how hard it can be i guess as there are so many out there! I got thrown in the deepend like alot of you other mums have and some days i feel like i am at my wits end but then i thnk, hey his here there are so many people so much worse off than me wake up girl!!

When ds was 3 and a half we were t boned at over 1ookms, he sustained a fractured skull, lesion to the brain etc etc and we have had alot of problems since, here i am with this little boy who was thriving and went to having a child who was so not my child, well i dont mean that in a bad way its just like he was taken from me and a strange child handed back. It took me such a long time to adjust, i had this confident little boy thriving so happy and then he was so mentally delayed so shy, so angry! His still got a long way to go, his a nearly 5 year old stuck in a 2 year olds body. He has angry outbursts but his got a heart of gold too its so hard sometimes. LIke i said though there are worse off than me out there and i am lucky his still here today :) Thats what keeps me going!