We’re so lost navigating our child’s needs

[Hibbutyhop]

I’m not even sure what the purpose of this post is but we’re very much stuck in no-man’s land at the moment and it seems to be getting worse by the day. Essentially, my 9yo DD spends the majority of her time at home screaming, shouting and speaking to us in such an unpleasant way. She literally could not scream louder and it starts from the minute she wakes up. We’ve just submitted a neurodevelopment team referral for possible ASD/ADHD/PDA traits of which she shows absolutely none of at school. I know this is going to be a very long process but we cannot afford a private assessment at the moment.

I guess my biggest worry is that this is a trauma response/ attachment issue. I had a medical scare in pregnancy, alongside a bereavement and then undiagnosed PND. I know about how important the bond between child and caregiver is but she seems to be utterly traumatised by life and it feels impossible to nurture a bond with a child who is furious all the time. We’re on a waiting list for private therapy and I’m desperately trying to research to get a better understanding but she spends the whole evening having meltdowns which makes it impossible to do anything other than the basics of day-to-day life.

Help! Has any one had a similar situation and seen the light at the end of the tunnel?!

That sounds so difficult. Does she sleep and eat well? Can she communicate if she is ill or in pain? Do you know what triggered the shouting/meltdowns?

Are there things that help? Sensory toys, weighted blankets, small space to sit and calm down (like a small tent?)

@CompluterSaysNo Thank you for replying! It is so, so tough. She’s actually a great communicator, no issues talking, and at school would be considered extremely well behaved (albeit shy). She achieves well academically. But at home, everything is a battle. Occasionally she’ll be ‘in the zone’ with something she enjoys and we see the calm, creative, funny child that’s underneath all the fury.

I’ve made her a sensory box with a whole range of fidgets, squishy toys, chewing gum etc to help her regulate and it’s had a little bit of a positive effect. She’s just so, so argumentative all the time and needs her needs to be met immediately. Being strict makes her worse for the most part!

She feels so complex, it’s hard to know how to help her. Thank you for taking the time to respond.

This may be outing but my situation was very similar, albeit my daughter also presented in a similar way at school to how she was at home. We also had/have a difficult background of a very stressful pregnancy (I had lots of medical issues), serious illness at a few weeks old which meant a hospital stay and me thinking she would die, terrible PND (no true bond until post 18 months old) and various childhood traumas she was exposed to including marital problems and my husband having a psychotic episode which triggered a breakdown.

Note the ‘was’ in my first sentence. There is hope! We participated in a CAMHS intervention around building attachment and it literally changed our lives. I completely changed my parenting style as a result and it not only helped me to bond with my daughter but to also repair the rupture that led to the trauma which had fuelled her previous presentation and behaviours.

It is not an understatement to say that she is like a different child both at home and at school. I know school had previously thought her to be autistic (interestingly professionals had disagreed with this and I always felt in my gut that she wasn’t) and some of her behaviours certainly looked like ASD, PDA and ADHD, but the change in her has been astounding. I still don’t believe her to be completely neurotypical, but how much of that is residual damage from when she was younger I don’t know - and I have hopes that things will further improve over time.

My advice if it helps:

• Try to expedite the private therapy if you can
• Contact CAMHS and ask for a Step 2 referral to their ‘Circle of Security’ intervention. This is what we did and has literally changed our lives. We were originally referred via our school SENCO
• I know it’s difficult but try to meet DD with kindness as much as you are able (and I know how challenging this can be when you are met with screaming etc, I really do!). Show love not only through physical touch such as hugs, kisses etc but carve out quality time to spend with each of you that she knows is her ‘special time’.

@Songoftheseas this has been amazing to read, on many levels. Thank you so much for giving me some hope. I’ve realised I’ve got a book on the ‘circle of security’ already (but it hadn’t been the right time to read it before) and I’ve googled this course in my area. I’m going to contact the provider tomorrow for more information. I already feel a bit more positive. Thank you.

Some people find The Explosive Child book helpful. Some find using PDA strategies helpful.

What support is the school providing? If school life was easier, home life is likely to improve too. Do they have anyone who can support emotional literacy work, Zones of Regulation, drawing and talking intervention?

Some find sensory equipment and trampolines helpful in regulating DC’s behaviour.

I've done Circle of Security as well and really appreciated the insights and support. I actually joined a group to support a friend but ended up getting loads and loads out of it myself. If you haven't found anyone local I saw this on a website offering the material online - another friend is thinking about doing it this way....

Next course dates: Every Monday from 2nd Sept – 21st Oct 2024
Time: 7-8pm
Venue: Online (Zoom)
Cost: £120/person (£160/couple)
Very limited spaces
Email [email protected] for more info and to reserve a place