Understanding

[ContessaY12]

I have an 9 year daughter who is diagnosed with Epilepsy, developmental delay and learning disabilities. Her behavior is getting out of hand. To where she is now getting kick out of places. I need help understanding what should I do. I have been disciplining her, by taking things away, making her bed time early, not giving her snacks. Can someone please give me some advice?

[Sarah_Mencap]

Hello ContessaY12

Welcome. It can be very difficult knowing the best way to handle challenging behaviour. There is some advice on here - mencap.org.uk/learning-disa...

You might also find the The Challenging Behaviour Foundation useful - challengingbehaviour.org.uk/

If you'd like to talk to someone about this (it can be a great way to let off a bit of steam) then Mencap's helpline has trained advisors who can help. Give them a call on 0808 808 1111

I am sure there are other parents on here who will have been in your shoes - you are not alone.

Best wishes, Sarah

[forgetmeknot]

Do you know why she is doing these things? Is this a sudden change of behaviour? Is there a common link between the incidents? Are the places/activities what/where she actually want to be?

With my daughter (challenging behaviour/ SLD/non verbal) this type of behaviour has, more often than not, been because she didn't want to be there, do that, was unhappy about something or someone or felt insecure. Being angry and punishing her provokes more bad behaviour. I try to stay calm, tell her how sad and disappointed she has made everyone, then move on. It doesn't always work, but it usually minimises the "recovery" time.

You are not on your own, many of us here are in the same boat, you are stronger than you know. Believe in yourself, you are worth it.

[makka_pakka]

Hello, I know how difficult this is to cope with, as we have had years of increasingly challenging behaviour with our son who is 12, with SLD, autism and epilepsy. Is your daughter in a Special School? Does she get speech & language therapy? She may have sensory issues too. We found with our son that discipline has to be tailored to his level of understanding, and we have to make allowances for his uncontrollable urges (like ripping up plastic bags, orbiting our arms for instance!). But I think the important thing is that you and your daughter need support to make life enjoyable for both of you, and in my opinion this should be based on what works for her, what her trigger points are, her motivations and level of understanding .

There are specialist playschemes and saturday clubs with staff who cope with behaviour and epilepsy, and it can be a positive social experience. Overnight respite has also helped our son's independence skills.

In my experience your child's special needs have to be fully recognised, and stated in the EHCP to get specialist support, and you may find an Educational Psychology report very useful. There is help out there, and you could start with getting advice from your local SENDIASS. I hope you have success, I am rooting for you and your daughter!

[LDHelpline_Mencap]

Hi @ContessaY12

As forgetmeknot said challenging behaviour can often be a way of expressing that something isn’t working for the person. Like makka_pakka say’s it can be important to look at what works for your daughter and what might be triggering her behaviour.

You can ask her GP for a referral to Child and Adolescent Mental Health Service (CAMHS) who will be able to carry out a functional assessment and create a positive behaviour support (PBS) plan.

There is lots of great information on PBS on the Challenging Behaviour Foundation Website.

challengingbehaviour.org.uk

As makka_pakka says getting your child’s needs recognised in her EHCP and getting the right support at school can be really important.

IPSEA have some great information on EHCP’s : ipsea.org.uk/

And you can find your own local SENDIASS here:

councilfordisabledchildren....

Contact have a lot of useful information about getting social care services for your child, which might also be useful: contact.org.uk/advice-and-s...

Don’t forget that you can also ask for a parent carers needs assessment for yourself too:

contact.org.uk/advice-and-s...

Please call the Learning Disability Helpline on 0808 808 1111 if you want any more info.

Linzi

Information and Advice Officer