Parenting / supporting black SEN children

[Sugarintheplum]

Me again!

Please, I have a little niece who has an ASD diagnosis. She's still pre-school age. I want to support her and her parents, so just wondered about any advice people on this board might give? Extra hurdles for black families, if any? Best ways to overcome these? Lessons learned?

I have another cousin (other side of the family) who has an autistic child, and they have navigated the system really well so far it seems. They have just got a grant to renovate their house worth tens of thousands, for example. One parent is white, however, and I do wonder whether things would be going so swimmingly if both parents were black.

oooh, I just wondered whether I should have written black children with SEN.

I really don't mean to offend anyone, sorry if I have at all.

I work with SEND children and young people. In my experience the thing that supports the children of any race most are....

1. The family being willing to listen to the advice of professionals and act upon it. Recognise that they may see things that parents do not.

2. The family recognising when there is an issue and asking for help about it.

3. Chasing up on referrals and appointments. Eg - If OT say they will contact the family in two weeks with a report,contact them after a week to chase the report. If S&l say they will send a copy of the outcomes to school- phone and make sure they do. These are not a dig and OT or S&L- just an example that overstretched and underfunded services may need a little reminder.

Specifically to SEND from BAME communities, I have observed some reticent behaviour from families who are very devout church goers. This is NOT a dig at particular faiths- as a Christian I can relate to some of their worries. However some families do not wish to engage because of beliefs/ cultural pressures.

Similarly I have observed this lack of engagement when it has been the first son in the family from some cultural backgrounds.

With regard to your family @Sugarintheplum, it’s lovely to hear that both children have supportive family in the wider sense. They will need this support al through life so it’s nice to have a range of people who have their backs.

With a focus on the child that has had funding to that extent to remodel his home, I sense that his needs most be severe and have funding through his EHCP. He may be older and further into the system so I don’t think that race is a player in that sense.

For clarity and balance in the statement- I have met families of all races and cultures and can express observations on a whole host of things but I’ve tried to limit to fit to your scenario.

Should you need further support of recommendations for charities that can provide funding to families then I’m happy for you to pm me.

I have a child with high functioning ASD and Race and Social Class definitely play a part in how you navigate the system. Black children especially boys are more likely to be viewed as challenging or potentially aggressive as opposed to being treated as vulnerable disabled children. DS is primary aged and quiet and anxious and I worry about what happens to him as an autistic adult particularly in relation to the police.

As a parent the SEND system is exhausting whatever your background but so much of it is dependent on professional discretion and subjective opinions (getting onto diagnostic pathways, school and professional support for an EHCP application etc.) that the usual biases are sure to creep in. I am well educated and articulate and can afford private therapy which helps.

MN rightly talks about the need for SEND parents to embrace being "that parent" but as ever it's not straightforward as a Black parent. I take the lead with the school SENCO, the LA and other professionals but given the gaps in provision and funding I regularly have to tread the line between advocating for my son and avoiding the angry black woman trope.

This discussion is a really good intro to the issues:

www.specialneedsjungle.com/we-need-talk-about-race-send/

My experience echoes what Orchidflower1 mentions.

My DD received her diagnosis of autism at 2yrs 10mths, just before the pandemic hit. She'd been under OT, PT and SALT since just after turning 1, as they had identified development delays in her reaching milestones.

The healthcare professionals we've come across couldn't have been more helpful, though DH was very suspicious in the beginning that they were keen to give her a label so they could pass her on (conspiracy theories, don't ask).

We're about to start the EHCP process, as she will start reception in September 2022, and are being supported by both our nursery (private) and early years team at the local authority. We'll be aiming for DD to attend either a local special school, or school with a services centre attached.

Our borough is VERY diverse, and they seem to have a lot of funding for providing SEN services, which contrasts with what I've heard from other SEN parents (white ones included), who have had to fight every step of the way. It may be that we've not reached a difficult stage yet given DD is so young, but so far, I've only got positive things to say about our experience, which has surprised me.

Mine has ASD/dyspraxia and we got a leaflet with a list of books we might want to buy and a course we could go on that had a 9 month waiting list (we are white). I would imagine your cousin's lo has far more complex needs and this is why they have had so much help so things might be different for your niece depending on her needs rather than the colour of her parents.

I would really recommend reading up on ASD a bit if you can, it will really help you understand your niece although every child with ASD is different of course. You sound like you will be a lovely aunt though just because you have taken such an interest xxx

@Tal45

Mine has ASD/dyspraxia and we got a leaflet with a list of books we might want to buy and a course we could go on that had a 9 month waiting list (we are white). I would imagine your cousin's lo has far more complex needs and this is why they have had so much help so things might be different for your niece depending on her needs rather than the colour of her parents.

I would really recommend reading up on ASD a bit if you can, it will really help you understand your niece although every child with ASD is different of course. You sound like you will be a lovely aunt though just because you have taken such an interest xxx

Sorry you’re waiting do long @Tal45. If you’re still waiting, I can recommend

www.griffinot.com/

For dyspraxia resources.