Two of my four children have two unrelated disabilities AMA

[roseblossom75]

My 19 year old is non verbal, developmental age one year old and fully dependent. He lives in adult residential care due to the level of care he needs (two to one when out in the community) and has no danger awareness at all.

I have two healthy middle children.

Youngest child (aged 7) has Down's Syndrome and mobility problems.

[Kaydogsdinner]

Hi, that sounds like you have a lot on your plate!

What was your eldest like when he was little? When did you first know something was wrong? Did he ever have language?


How do you cope generally?

[Kaydogsdinner]

More questions from me sorry!

when your two middle children developed typically how was that for you in comparison? I have a daughter who has autism (5) and another daughter who appears (so far) to be developing typically, I've found it bittersweet as my bond with my youngest (18m) is a world away from what it was with my oldest, sometimes I find it quite sad.

How did you feel when your youngest was born?

I'll be quiet now!!

[roseblossom75]

What was your eldest like when he was little? When did you first know something was wrong? Did he ever have language?

For his first year of life, he was absolutely fine.
He was meeting all his milestones.
He had even begun to "babble".
I honestly had no idea that anything was wrong.
He was my first baby, so I had no other child to compare him to, but he was alert and smiling, engaging with toys etc.

I think the very first concern I had was not long after his first Birthday.
He was crawling up and down the caravan (first holiday) when he began head-butting the floor (quite forcefully so he had a mark on his forehead). This was something that continued.
Then in the weeks/ months that followed he gradually began "drifting away" from me. The big beaming smile of his baby days was replaced by a blank expression.
He showed no interest in any of his toys and I just couldn't get him to engage in any activities.
I had started taking him to parent and toddler groups by this stage and began comparing him to others of his age.
He didn't point at objects or wave "bye-bye".
I was very much in denial at this stage though as I just didn't want to believe there was something wrong with my little boy.

How do you cope generally?

At the moment, with my little one I'm coping fine.
My daughter is 14 now and my other little boy is 9.
My child with Down's is seven, and although we do have difficult days, on the whole I just muddle through and try to enjoy the good times.
I think the hardest thing for me is the sadness I feel for my eldest son, who is now a handsome young man but has the mind of a baby (he shakes a rattle) and no speech at all.
I just miss him so much.
Some days he will be quite focused and give eye contact, yet other days he just seems to look right through me as though he doesn't recognise me.

[Hideandgo]

How is your day going? Do u have the help you need? Congratulations on your 4 beautiful children and I’m sure you work hard to keep them all happy and well with their different needs. Are you a single parent?

[roseblossom75]

when your two middle children developed typically how was that for you in comparison?

I felt relief more than anything. My daughter was a much more placid baby than my eldest son had been and in hind sight I wonder if my son was more restless due to the problems he had.

When I had my 3rd child (little boy) I was relieved that he too was fine, but then sometimes it makes me wonder how my eldest might have been as he goes through each age and stage.
I sometimes find myself wondering how his voice would have sounded, what his interests might have been, who would have been his friends etc.

How did you feel when your youngest was born?

I didn't find out he had Down's until the birth and in all honesty it acme as a huge shock to me. I know it sounds naive but I somehow felt that because I had one child with a disability, I was somehow exempt from having another with a totally different completely unrelated disability.

[Canshopwillshop]

Have you had a diagnosis for your eldest son? Does he respond to his siblings?

[roseblossom75]

How is your day going? Do u have the help you need?

I do have support from my youngest child's special school (who are fantastic and he has made so much progress both at school and at home).
He doesn't have a social worker at the moment (as I don't have any issues and everything is ticking along nicely).
The only support I think I would welcome would be counselling that is centred solely for parents of children with disabilities. I haven't been able to find this so far (only general counselling).
I think talking about how I feel (particularly the sadness I'm currently feeling for my eldest son) helps so much.

Are you a single parent?

Yes, I have been for five years now.

[elliejjtiny]

Do you get judged for having more dc after having one with a disability? (No judging from me btw, I have more than 1 child with disabilities myself and get judged a lot)

How old was your eldest when he went into residential care?

What do you think about the welcome to Holland poem?

[roseblossom75]

Have you had a diagnosis for your eldest son? Does he respond to his siblings?

His offical diagnosis (recieved at two years) is "Significant learning difficulties with some autistic features".

Sadly he doesn't respond to his siblings at all which is one of the hardest things.
He is not aggressive at all, but he just doesn't seem to notice them.

[Canshopwillshop]

That must be v hard OP

[roseblossom75]

Do you get judged for having more dc after having one with a disability?

I have been in the past, yes.
More so when I had my daughter (four years younger than eldest son) as people struggled to understand why I would want to risk having more children when I had a child who was severely disabled.
It was just that I wanted to experience all those little things that most mums were taking for granted. Just the small things like when I would go to fetch my child from nursery (he went to a mainstream nursery back then whih turned out to be a HUGE mistake!) and I would see the other children proudly presenting their mums with a painting or something they had made.

When my youngest child was born with a totally different disability people were shocked to begin with.
I think the biggest question they were asking was how I was going to cope.

How old was your eldest when he went into residential care?

He went into residential care the day after his 12th Birthday.
My youngest little one was 10 months old and in hospital at the time.
It came as a huge shock to me as I was given just two weeks notice and I had absolutely no idea (that SS disability team had been planning this for months behind the scenes insisting I wouldn't manage TWO severely disabled children with very different needs).
It was "voluntary care" and I still maintained PR until he reached 18, but I had very little say in it. They told me it was in my best interest to agree to let my eldest go or that it would become a choice between my eldest and youngest. They actually refused to release my little one from hospital until I agreed to let my eldest go.
I wasn't offered any counselling at the time and it was honestly the most heart shattering thing I have ever had to do.
I have never got over it.

What do you think about the welcome to Holland poem?

I think it's beautiful.
I first read it shortly after my eldest child's diagnosis when I realised that the future we were going to have was going to be very different to the one I had hoped for. It brought me so much comfort and actually inspired me to write this poem of my own.
As my son became an adult I added the final verse which sees him riding in his own special carriage.
(I have changed my son's name).

A group of young children are waiting with their parents to board a train....
which is destined for the most amazing journey!
It is a very special and unique opportunity, and in order to be a part of this experience each child is handed a golden ticket, which permits them to step on board.
Jack's ticket slips from his hand...and is carried away in the breeze.
I try to retrieve it for him....but it is too late.
The ticket is lost forever.

The train arrives and the children and their parents step on board.
I ask if there is a place reserved for Jack....but the door of the train slams shut!, leaving us alone on the platform.
The train starts to move off....slowly at first.
I lift Jack up into my arms and we start to follow it....desperately trying to catch up!!

On board the train, the children learn to talk,
They chat to their parents and ask inquisitive questions about the world around them.
They lose themselves in magical stories.....and become Kings and Queens, doctors and nurses.....as their make-believe play comes to life through the power of imagination.
Their paints and crayons create beautiful pictures of a colourful world....which they proudly present to their parents.
The dazzling excitement fills the carriage as the children gaze in wonder....
Santa has arrived with a huge sack full of presents.
Jack's gift is casually discarded.....
He doesn't understand the concept of presents and he doesn't know who Santa is.

The train starts to speed up now...as the children learn to read and write.
Jack continues to follow behind, but the gap is getting wider all the time.
The children put on a play....and their parents wipe away tears of joy and pride.
They start to develop their own interests....play football....ride a bike.....
Special friendships are formed....some which may last a life time.
Amid all the hustle and excitement....no-one notices the empty chair....
Where Jack would have sat to share the experience.

The train moves up a gear now as the children become teenagers and enter High School.
Here they study hard for their exams....and start to think about their chosen career.
The laughter of the teenagers echoes down the valley....
and then gradually fades away....
For the train has now disappeared.....taking them on to the next destination....Adulthood.

Here they will fall in love....set up a home....become a Dad...
While my precious boy remains trapped in his own unique world...

But he is not alone on the track...

Jack rides in his own special carriage...
Where he travels at his own unique pace....trying to make sense of the world outside his window ....
A world where everyone seems to be speaking in a different language that he can't understand.
He has physically grown into a handsome young man....with a smile that speaks more than a thousand words.
Occasionally that carriage will stop....and just for a moment we are allowed to step on board.
Jack looks me right in the eyes and takes hold of my hand.
In that fleeting moment.....it is almost as though he has stepped into my world.....just to say Hello....
And to let me know that somewhere.....way beyond the barriers of autism......and deep within his heart.....

He has found his Mum.

[elliejjtiny]

Op that poem is beautiful. Much better than the Holland one.

[allthefuckery]

Op did anyone ever tell you why he smiled in his first year and then stopped?

[roseblossom75]

Op did anyone ever tell you why he smiled in his first year and then stopped?

The paediatrician said that sometimes autism doesn't become apparent until they reach a year old.
It was liteally as though someone had flicked a switch.
It's apparent on photographs too. Looking through albums he's there as a baby smiling away and then it changes to this blank expression.
I always remember taking him to have a professional photograph taken when he was 18 months.
The photographer said he was the hardest child he'd ever come across to get to look at the camera.