Before you had children, did you spend much time thinking what life would be like if your child was significantly disabled?

[fiverabbitsplease]

I'm curious about this, because I am disabled since I was a kid, but in a lot of ways have had a very 'normal' life. However, I can't work full time which is obviously limiting, and can't safely become pregnant and carry a baby without serious risk to me or the baby - so my life is profoundly affected by my disability. It has shaped things in ways I didn't want, although I am lucky to have a very good life, relationship, friendships etc.

I also have a sibling with different disabilities who can't live independently.

I'm pretty sure my life experiences mean I think a lot about what would happen (if I just risked everything to do with my own health, and tried to conceive) if my baby was disabled. I'm really struggling with not being able to have a child of my own as I get into late thirties, so my mind is going down all sorts of wonderings about what would potentially happen if I threw caution to the winds and hope for a good outcome.

Anyway, that made me curious about how much the average "healthy" couple think about disability before the try for a baby? Is it something you thought about at all?

No, I didn't. It didn't really occur to me that my child/children would be anything other than able-bodied/non-disabled.

My DS has a relatively mild physical difference/disability which came as a massive shock to me when he was born. He also has ASD. The ASD has caused more challenges, but I have found it easier to accept, as it is such an integral part of who my son is. I love my son to bits and feel fortunate to have him in my life, but there has been no DC2.

Yes, as DP has a child with a condition which normally causes death in infancy. DSC had multiple operations and procedures and survived, but DP was understandably very anxious about going through that again. (Our DC was thankfully fine).

Yes, as an older first time mum. I knew there was no guarantee I could even conceive let alone have a normal baby. But I did, I thought, had a lovely smiley bright little boy who was dx with ASD at 8. He's hard work at times but I love him to bits. Downs would have been harder. I have a family member who had a DS baby with very high needs, and they were very young parents.
There is no certainty in anything. Go hug your loved ones.

Yes! So much so eventually decided it wasn’t worth the risk - as wasn’t sure I wanted a child enough to deal with one being disabled

Sadly our society champions motherhood as this pinnacle goal, yet offers a lack of support or recognition if the child has special needs

Not really allthough I'd had more contact with children with disabilities due to my mums job. I guess I thought it won't be me. But then I had a child with a physical disability undetected on scans. It definitely opened my eyes. I didn't have a second due to my own serious health issues which were probably triggered by pregnancy. Something else I'd not thought about the potential long term impacts of a pregnancy.

@Hoowhoowho, that's so sad. I'm sorry for you.

Yes I thought about it. A lot. No major risk factors other than being mid/late 30s and DH would be a wonderful father to a child with a disability and I would have done my very best. We declined screening etc. Both children have no disabilities (that have presented so far anyway- they are still young) and I count my lucky stars for that every single day.

No but I have a severely disabled child who is non verbal severe autism and learning disabilities,he's my world though and I hate people being sympathetic and thinking we must have a dreadful life ,We don't ,it's far from easy but he makes me laugh everyday it's not the life I planned but it's the life I have and it's not all bad .

It only came up when we talked about the tests for Down syndrome. I didn’t want them as it wouldn’t have made any difference to me, but my husband wanted them so we could “be prepared”. I said you can’t ever be prepared for raising a disabled child. I can’t actually remember what we decided in the end.

As it went, I didn’t carry to term and my daughter was born early and now has cerebral palsy. Her disability is only physical, has no learning or speech disabilities (quite the opposite) but I do worry about how her future will look. I have no idea if she can carry a child.

But your fears are why we didn’t try early enough to have a second child and by the time we decided to it was too late. On reflection, it’s as well we didn’t because of the same thing had happened again and we hadn’t been so lucky that the CP wasn’t severely life altering, our lives would be incredibly hard and our daughter’s issues wouldn’t have our full attention and she would be impacted by that. I always worried she doesn’t have a sibling for when she is older, but equally she could have ended up with a sibling that she’d have to look after once we were gone.

If I had known this was going to happen to our family I’m not sure what I would have done. But I’m glad we have her, she is amazing!

We discussed whether or not to have a private test for certain chromosomal abnormalities - it's called the Harmony Test here in Australia, not sure if it's the same elsewhere.

We did also discuss what would happen if we discovered that the baby did indeed have some sort of abnormality. We agreed that our baby was our baby no matter what the circumstances, and that we'd love them regardless.

In all honesty, now that we have children and know what that's like (none of our children are disabled as far as we know) I think we were really naive when we discussed it when I was pregnant with my first. Obviously I still would love my child regardless, but I don't think we had any inkling of what we were discussing. Having experienced parenthood I can honestly say that I don't know if I could handle a disabled child. I would desperately want to handle it but I think it could be very hard and I would hope I had lots of support from my DH and others.

well as their dad(my now ex) had mild asd they would have it so we just accepted it as a major possibility

in fact it turned out the now 17 y old has

severe Aspergers(i know its asd now but when he was diagnosed this was on his diagnosis paper as was all below)
moderate autism,
severe dyspraxia,
mild physical Tourettes,
ODD(Oppositional defiant disorder),
severe sleeping disorder(as in doesn't sleep at all due to zero melatonin produced)
dyspraxia

now 11 y old
dyspraxia
damp syndrome with pragmatic disorder
asd
Neurodevelopmental difficulties
working memory disorder
add(not adhd he dont have the hyper part)
Developmental co-ordination disorder(DCD)
dyslexia
extreme demand avoidance

both need 24/7 care but as i have severe PCOS and was told i was infertile due to never having a period any child would have been so wanted be it 1 or several(we never used contraception in 21 years of being together)

Never thought about it then had a severely ill dd who lived for only a year. I worried about fertility problems but never thought I’d have a child with a one in millions condition.

Not until I was pregnant with my youngest. After the 18 week scan they thought she potentially had some problems, possibly incompatible with life, possibly severe disabilities. We were taken into one of those rooms with a box of tissues on the table and offered a cup of tea. We spent hours and hours talking together and I spent time talking to various helplines. After many tests and others which we refused she was born healthy, but I and our GP thought she may have Downs, she was tested for that, her tests were negative and she is now a healthy adult.

Also I don't think people realise that tests in pregnancy don't pick up all disabilities ,my child has a chromosome deletion thought to be the reasons for his disabilities ,they didn't test for this .

I worried about it constantly while pregnant (work in primary care and have a reasonable idea of how many things can go wrong) but he was born with no disabilites. Obviously anything could happen, but I try not to think about it too hard. Don't think we're going to have a second, and the knowledge of how much has to go right in order to have a child with no disabilities is part of the reason. It is a very hard life for many parents, which I did think about.

Tbh I don't think we did much - you tend to just hope for the best (head in the sand, maybe?)

I married late and so Downs Syndrome was a consideration - we did discuss that and I was adamant I would keep a Downs child. DH would go with my decision. But I don't think we discussed anything beyond that.

We are very lucky to have two wonderful DCs - one has autism and ADHD which presents its own issues, but we are so lucky that he's in good health. They complete my world and I wouldn't be without them.

I'm sorry to hear of your situation. As a healthy woman with financial security I would have conceived alone if necessary - but I'm so glad I didn't have to be a single parent. Your situation is so much more complex, I wish you all love and luck with whatever you decide...

We did think about it and talked about it. I don't have much exposure or experience of bringing up disabled children but it was something we did worry about whether we'd have what it takes to provide them with a best start in life. We don't have much money and no real support network around us so we did wonder how we'd manage it.

@TasteTheMeatNotTheHeat

We discussed whether or not to have a private test for certain chromosomal abnormalities - it's called the Harmony Test here in Australia, not sure if it's the same elsewhere.

We did also discuss what would happen if we discovered that the baby did indeed have some sort of abnormality. We agreed that our baby was our baby no matter what the circumstances, and that we'd love them regardless.

In all honesty, now that we have children and know what that's like (none of our children are disabled as far as we know) I think we were really naive when we discussed it when I was pregnant with my first. Obviously I still would love my child regardless, but I don't think we had any inkling of what we were discussing. Having experienced parenthood I can honestly say that I don't know if I could handle a disabled child. I would desperately want to handle it but I think it could be very hard and I would hope I had lots of support from my DH and others.

The fact is untill it happens to you nobody knows if they could cope with a severely disabled child ,most people do because it's their child and they love them,my child's disabilities didn't become apparent untill he was about 18 months and by that point he was a huge part of our family .

During pregnancy or before, I naively didn’t. It crosses my mind now when I see all that gender reveal Instagram nonsense etc.
It was after, when I saw just how common SN are at school, at baby groups etc.

One of mine needed speech therapy for a speech delay (maybe that counts) so we often came into contact with children with Down’s syndrome, asd, cleft palette, etc.

Yes, I worked in NICU before I had DD1, so saw a lot of babies with congenital illness/disease and babies born early due to maternal illness, or in utero illness/infection.

When I was pregnant with DD1, I refused the triple test, nuchal fold wasn't available anyway, although I would have refused. My reasoning was that I had no intention of having an amniocentesis at any point prior to viability, because I wouldn't go on to abort, so it presented an unnecessary risk. I accepted the 20 week anomaly scan because I would want to know any information that would impact the birth plan. I was particularly aware of diaphragmatic hernia and other conditions that need treatment before/straight after birth.

DD1, it turns out, has a suspected genetic syndrome (wide ranging features, but not identified by karotyping/micro array/100,000 genomes), a brain malformation, microcephaly, historical epilepsy, learning difficulties and ASD.

I now feel a bit curious about whether the triple test would have shown an abnormality or not, but I wouldn't have changed my decisions.

I made the same decisions for DD2 & DD3, although by then I had to refuse the nuchal fold, too.

Dh and I did. We refused the amnio for dc3 after they said something wasn't right. We weren't risking losing him. Turns out they were completely wrong anyway and there was no excuse for them being so wrong.

I didn’t really think very much about it which is strange as I babysat a boy with profound disabilities as a teenager and later worked in a school and hospital with children with disabilities. I think in many ways l loved the kids I worked with and so felt I would love my child whatever.

I was older when I had my children and it’s only in the last few years (my youngest is 15) that I’ve started thinking about how lucky I was that they didn’t have major disabilities. It would have been very hard now I’m fast approaching my 60’s. One has ADHD, one has an ASC and one most likely has both but is awaiting further diagnosis. They are all brilliant in their own, very different ways and will all live independent lives eventually.

I thought about it briefly as was late 30's and pregnant for the first time. I declined the tests though because I knew my choice would not be abortion whatever the results. My consultant went a bit nutty at me for I guess adopting a head in the sand stance. DS did need fortnightly scans from 16 weeks through to birth but all came good. He is a strapping teen. Conversely DH and I had also agreed if there was no pregnancy we would not pursue tests and IVF. (No religious reasons.)

I hope you have people you can talk to about your thoughts and access to great support whatever you decide.

Yes I did. And it was a significant factor in not wanting a 2nd child- I knew I was already struggling to parent a child with no additional needs and felt I absolutely wouldn't cope if I had to, for example, give up work to care for a child.

Yes, we discussed it at length when we made life assurance arrangements for our first mortgage soon after we were married.

We took out Critical Illness Cover that would pay out a significant lump sum in the even that either of us were diagnosed with a serious illness, or we had a child that was born with a disability, or became disabled prior to their 18th birthday.

I’ll be honest and say that I wonder why more people don’t do this as it is part of every mortgage discussion I have ever had, so very much a normal thing to do.