Mum’s Story

AJ’s family experienced years of significant challenge while supporting his complex needs. This story reflects their journey through crisis, the support they received from CDT, and the positive changes that followed for AJ and his family.

Can you tell us a little about how you came to be involved in CDT?

AJ has a disability of ASD, ADHD and PICA. He is a clever boy and is very aware of what is going on around him. As he was developing through adolescence he was becoming more aware of what he was unable to do and missing out on, and he was deeply unhappy. AJ would bang his head and hurt himself and also hurt those around him. We were all so scared and unhappy living together. AJ stopped leaving his bedroom, he was even eating in his bedroom as he didn’t want to leave his room.

We have had involvement with Social Services since AJ was 2 and a half. This was mostly for parenting and help managing his behaviours and the impact his behaviours were having on his siblings. We were a family in need, because AJ had bitten his sister. Up until AJ moved into a residential care we were having support from CDT with respite and direct payments for PA’s. We also had support for our older children.

Thinking back over the last 12 months – what good or bad changes have come about as a result of your involvement with CDT?

It has been positive for all of us. My partner is not having to work unsociable hours now – as we needed to be available for AJ 24/7. This meant that he worked nights and I stayed at home to look after all the kids needs. It was an expensive time for us as well, as AJ would break things and make holes in the doors and walls.

When AJ moved into the residential home, we were able to start rebuilding our family. We were really isolated as we needed to keep one another safe. We couldn’t go out because of how stressful it was having to protect ourselves and other families. When attending the disability activities, it became really difficult as other families had to get involved to support us with AJs behaviours, so we just stopped going. This took a long time to rebuild as we were so used to being anxious in the community.

When we visited the residential placement we were looking for ways to reject it and say no to it. We went there and had lunch with the staff and other children, and the manager was there with her own children too. It felt like genuine care, not like the staff were being paid to look after the children. I didn’t want my child to be a pay packet. I have worked in social care myself and have seen a lot of bad things in the care sector when people don’t really care and it is just a job, but the staff seemed to care about the children and see them as their own. I really felt the residential placement gave the time for AJ, for him to meet the staff and build a relationship with him.

Knowing that AJ is now in a placement where he is going out and going to school and is happy means everything. He is trying new food and he has stopped wearing his helmet (which he has been wearing since he was 2 years old for his daily head banging). The staff give him the time he needs. Its not like normal parenting and that is what he needs, the staff are able to change and recharge after their shift. The staff have time to regenerate but when parenting there is no start and ending, it is a constant.

The biggest thing is the guilt of letting them go. I felt like a failure as a parent for a very long time.

Of all the changes you have identified, which one is the most significant to you and why?

After his move, the biggest thing had been looking forward to seeing him. I have also been able to access early help parenting for my other children so that I can support my daughters with their emotional needs.

I have weekly video calls with AJ and we can see he is happy and thriving. I am noticing him now making references to things we use to do when he was little – he made references and noises about old videos he watched with us when he was younger, this is important as it shows he can think about the past more.

CDT are also helping us with the transport costs to go and see him, so the journey is not such a financial burden.

I am feeling more confident, the parenting guilt is dissolving and the fear of him being taken away from us is dissolving. It wasn’t neglect, its not that we don’t love him or don’t want him. If it was him on his own we wouldn’t have a problem. But with 4 kids, we were failing them all. Having to hide from a child was not a healthy way to live. We are still working on the relationship between AJ and his siblings and this is slowly coming.

Regarding the most significant change you have chosen, the space to do more meaningful things with everyone, please can you tell us a bit more about what it was like before?

Life was really hard. My partner literally had a stroke during one of the LAC reviews and was taken to hospital. This is when Social Services really stepped up and started providing daily carers into the home and searching for a placement for AJ.

Whilst the carers helped in the home, it felt like ground hog day. But AJ would not leave his room at all. So he was so isolated and we were too. We didn’t see friends or family at all.

The violence was intense. AJ was hitting and punching all of us. He was banging his head daily and had a huge open wound on his forehead. He had no tolerance of his sisters, especially if they were having any attention from their parents or if friends would call for them or they would go out on an activity.

My oldest son moved out and the girls were displaying traumatised behaviours. My oldest daughter was self harming and my younger daughter was unsettled in school. We could not give them the attention they needed as we were so occupied with AJ’s needs.

What it is like now

AJ is getting on with the people he lives with and in his life now. I know he wont live independently, so it is good to know he is happy where he is and having his own independence. We bring them into the world to help them grow and fly, to get their own life and job. This is his version of it.