Adopting a child with genetic risk of intellectual disability

[melon301]

I'm hoping to hear from others about your experiences of adopting or raising a child with a genetic risk of intellectual disability. Did the genetic risk always play out or did you find it was never an issue? And if it did, what have your experiences been of raising a child with a mild intellectual disability? It's hard to gauge what this could mean as all the information online ranges from needing some support at school not not being able to care for themselves at all!

Our red line was to be able to attend mainstream school and expect to live independently.
DD1 was already in juniors so we could see what she was like.
DD2 was a bit more iffy as she was 2.5 and only on single words and generally delayed. However in the video we could see understanding and following instructions.

As it turns out DD1 has dyspraxia and DD2 has slow processing, dyslexia and dyspraxia. But both were at mainstream, DD1 left with 8 GCSEs. DD2 is now at college on a Level 1 course, and would probably have passed some but not all GCSEs if the pandemic hadn't pushed her shaky MH over the edge.

The older the child the less risk of that kind of disability being hidden.

To be honest, being academic myself, I have found it hard at times to appreciate how hard they can find things. On the other hand, I had the skills to help. DD1 especially benefitted from my being able to help her with GCSE prep.

Things are very complex. I think few people will be able to tell what exactly is genetic risk and what is trauma-related in their child. They often look the same. Birth families often were traumatised too, so their symptoms might be trauma-based too.

Any child you adopt will have the risk of mental health problems and special educational needs. A lot of birth parents have mental health problems, some diagnosed, many not, and a lot of children in care were exposed to alcohol in utero. Most of them are severely traumatised. It might even be that your child is fine for years and then, during the teenage years, they develop a condition. 50% of mental health problems are established by age 14 and 75% by age 24.

The older the child at placement, the more you know. Babies have to be quite severely disabled in order to not meet their milestones. A lot of conditions can only be diagnosed later in childhood. Some develop later. It is a gamble. Basically you have to think worst case scenario and ask yourself if you could handle that.

We under estimated the genetic risk.

Our red lines were also being able to attend a mainstream school and live independently.

3 years on and it's unlikely LO will be able to live independently. And realistically should be in a specialist school, but there's not enough places so he gets to be let down by the mainstream system which isn't built to cope with him.