Parenting children with non accidental injuries

[hollytree1]

I comment on the adoption board infrequently but have found reading the threads really helpful, I've name-changed for this, although I'm not really sure what I hope to achieve by posting.

My DD aged 6 has very complex and severe disabilities due to the non accidental injuries inflicted on her by birth parents. It was a sustained and very sadistic attack, not someone losing their temper and doing something out of character.

I feel so alone in parenting her, picking my way through the adoption and trauma side of things, and the SEN things and the way they intertwine. It's so difficult to advocate for her when people don't understand the ramifications of what happened and when it's not always appropriate for me to share her story; e.g. I'm open with her paediatrician but not the OT who sees her very infrequently but then I don't always feel that i get the best advice. I feel alone in the adoption world especially with professionals who don't have the balls to be honest about her experiences and parrot out the same generalised lines about BPs (which I agree with 99.99% of the time but it's offensive in our scenario). I've struggled so much to get further information on brain injuries in babies ( or "shaken baby syndrome"), I feel that each of her individual needs are (sometimes) seen but not holistically. I'd love even some research papers about therapies or interventions for children like her but can't find any.

I suppose I'm just reaching out to see if anyone else had words of wisdom for me, or possibly if anyone is parenting a child in a similar situation?

[startatthegin]

My child isn't nai, but brain damaged by substances, with other physical issues. I just wanted to say I really understand that frustration that no one is taking a holistic look, to understand all the issues, and how they intertwine. It's exhausting being the only person doing that.

[itsmyp4rty]

I can't imagine how stressful it is. I don't have any experience but in this situation I would be open with the OT and any other professionals as the information wouldn't go any further. The more they know the more helpful they might be able to be. I hope you find someone who gets it soon OP.

[Jellycatspyjamas]

The difficulty with being honest with professionals is that you’re repeatedly telling your child’s traumatic story - often with them present. I’ve had some very insensitive comments from professionals who just don’t seem to consider the impact that comment might have on my child in the immediate and longer term. It’s very difficult to navigate how much to say and who to.

Not only is care not always holistic, it’s often the case that clinicians or practitioners don’t check their records before they see you so you’re potentially repeating the same traumatic information every time. Would you really want to start each appointment with “this is Jemima, she’s adopted and sustained life changing injuries in an assault by her parents when she was 3”?

[Finishingoff]

@Jellycatspyjamas

The difficulty with being honest with professionals is that you’re repeatedly telling your child’s traumatic story - often with them present. I’ve had some very insensitive comments from professionals who just don’t seem to consider the impact that comment might have on my child in the immediate and longer term. It’s very difficult to navigate how much to say and who to.

Not only is care not always holistic, it’s often the case that clinicians or practitioners don’t check their records before they see you so you’re potentially repeating the same traumatic information every time. Would you really want to start each appointment with “this is Jemima, she’s adopted and sustained life changing injuries in an assault by her parents when she was 3”?

I always write down a summary of my LO’s background and hand it to any professional I see at the start of the appointment. I always end it by saying that I would like them to consider what is appropriate to say in front of a 4/5/6 year old etc and basically ask them to ensure that the appointment is sensitive and doesn’t inflict more trauma on my child!

[hollytree1]

Thanks all, yes it's absolutely been my experience that medical professionals don't read notes, and then say inapropriate things. On one hand my DD is so profoundly disabled she can't understand what is being said, even in very small day to day things nevermind medical appointments, she is pre-verbal. But her story is really complex to explain, I'm always honest to say that she is adopted and has a brain injury but the truth of the matter is that her brain injury was catastrophic, aswell as serious sexual abuse, rib fractures, broken limbs etc. So (for example) when SALT are giving me advice to not give her breakfast until she points to the relavent symbol and tell me I'm not doing her by favours by being too soft I want to scream at them, instead I explain for the hundreth time that as a child who experienced trauma this approach is too panic inducing for her.

What I find the worst is that all of her SWs have never bothered to read her file, they see me as a capable parent and don't bother doing much else other than argue about reducing respite hours. I'm desperate for advice from someone knowledgeable in supporting children who had brain injuries as babies, and preferably know how that interacts with also experiencing severe abuse but I don't know if that person exists! Sorry I'm being negative, it's all a bit much at the moment.

[WhompingWillows]

@hollytree1 just to say that you are seen and heard here. I have two non-birth related ADs and their combined life stories could add up to your AC’s. DD1 is blind and diagnosed with neonatal abstinence syndrome (among other disabilities, neurodevelopmental disorders and neurodivergence’s) due to her in utero exposure to heroin and methadone (plus other street and prescription drugs) as well as alcohol. AD2(7) was removed at birth due to the non-accidental death at 10-weeks-old of a previous sibling, plus the non-accidental and unhealed serious injuries of two half-siblings living in pain in the home.

What boggles my mind is that my AD2’s ‘killer’ is walking around scot-free and has never been charged let alone faced a court of law. This is because the family home was so chaotic and dysfunctional that the police and the CPS could apparently not identify exactly who may have been present during the incident which resulted in the baby’s death and so could not be confident of securing a conviction on the basis of beyond reasonable doubt. Instead, my AD2 remained in care for 2.5 years while there were two finding of fact hearings and birth father was identified as the culprit in the second on the basis of the balance of probability.

What boggles my mind even more is that I have been pressed on more than one occasion to agree to letterbox contact with said birth father - erm, that will be a hard no - and that I have been criticised by SWs for sharing my AD’s birth history with her (in an age appropriate way, of course) when she started asking questions about why she does not have a daddy (I’m a solo adopter).

Two things that may be a bit left field but would it be worth checking out if Tony Hudgell’s adoptive parents have a FB or similar group for those living with the ramifications of serious injuries caused to children by their birth families? Also, have you ever considered contacting the Criminal Injuries Compensation Board to see if there may be financial ‘justice’ for your AC?

[WhompingWillows]

@hollytree1 you would be eligible to apply for a grant from the Tony Hudgell Foundation: maybe it could help with specialist equipment or therapies?

https://www.tonyhudgellfoundation.org/applyforagrant

[mumof2many1943]

DS was left deafblind and cerebral palsy after BM took bucket loads of cocaine when he was 8 months old. I found it awkward when taking him to appointments and the first thing the professionals read was that mother took drugs. I got rather a lot of odd looks until I explained. It was always the same with a new consultant. As you say why can’t they read the notes. Some twerp asked was I still drug dependent!

[hollytree1]

@mumof2many1943 yes I've had several run-ins when people didn't understand! I got refused entry to the infectious diseases clinic with her once because on their NHS notes it said that mum was a risk and should not be contacted in any way, even with a copy of the placement order and LA consent form they didn't understand that I wasn't the 'mum' in question! I've found lots of your posts encouraging to read about your many children (I think a couple of yours have quite significant disabilities?) and the amazing way you talk about them. Between being adopted and profoundly disabled I think some view my daughter as being quite pathetic and/or that I only adopted her because I couldn't get a 'better' match. Obviously neither are true, from the very beginning when I first heard about her I knew we were right for each other.

[flapjackfairy]

@hollytree1
I adopted my foster child who has a v rare form of epilepsy . So he is v profoundly disabled though the parents didn't cause it as such because it was a genetic issue. However they didn't help matters by not getting him treatment in the early days etc.
I think a lot of what you are feeling is v normal and the anger on top must be v hard to bear. It is a lonely road at times and v isolating because there are not many people living the same kind of life.
I think.that I would come up.with a quick and easy phrase to.explain your child's situation without going into too much detail. You should be able to trust medical folks to maintain privacy but as you say sometimes you wish they would just read the notes .
I find it best to be really straight with medical professionals and I have no issue challenging them if I am not happy and I think that comes with time and experience. You are your child's expert and are in the best place to tell them what you need and don't allow them to bully you regarding respite! The system is at the point if collapse and it is so hard to get anything anymore !
Feel free to PM me if you ever want a chat as it us hard sometimes to find others in the same situation. Take care x

[hollytree1]

@WhompingWillows I'm so thankful for your kind and wise words, there is much to grieve for my child and the way her life has been impacted but she is alive, her life was able to continue and she is able to experience being loved and adored and kept safe. I think due to being consumed by my own child's story I ignorantly have not spent much time considering the injustice that children suffer when their abusers are not found or if found are not prosecuted. Both DD's birth parents were convicted of a long list of very serious crimes and are serving lengthy sentences for which I am very grateful.

I recognise your pain in knowing that your daughter languished in care unnecessarily due to processes and procedures, I have been left feeling very bitter about the lengths that the courts and LAs go to to safeguard BP's rights to the great detriment of the child.

Also thank you so much for mentioning letterbox, I didn't write about it because what I was saying was already getting long. It is mind boggling to me that I am expected to write to two abusers and sex offenders to tell them how well my DD is doing, what her life looks like and to celebrate milestones. Can you imagine if a wife was beaten so badly she could no longer walk or talk, was tube fed, had seizures, and was raped but she had to write a letter every year to her ex-husband who did it? I know it's not a 100% comparison to child and birth parent but the gall of the letterbox co-ordinator who keeps admonishing me for not writing is astonishing. (I feel the need to emphasise that I am not anti-contact or BP in general, I very much support my older DD to maintain letterbox and f2f contact via videocalls, this is obviously situation specific).

Your message gave me reassurance and alot to ponder- thank you