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A child with autism

Helping families through their journey as they raise a child with autism.
Our organization offers information, support for families.

Originally, I am from Baku, Azerbaijan. Some years ago my wife and I moved to London. Two of my children are autistic and go to a special needs school. One of the main reasons we started the charity, was that I felt a deep need to support families who are going through crisis and difficulties, related to autism. The idea is to be with them; support and encourage them, and help them to understand their children’s condition. When I looked around the UK, I was pleased to see that we have various charities, government schemes,and schooling available. The situation in Baku however, is devastating.

Four weeks ago, I travelled to Baku, and we had a great visit. I particularly enjoyed having special needs training for families, on autism. The attendees were mainly parents, and there were also two support workers, who work in orphanages with children with autism. I tried to provide all of them with something to take away from the course in their different roles.

When we first started the charity, I was not sure whether we could make a difference, or indeed what our main focus would be. At that time, I was unaware of the situation in Baku. After my visit it became clear to me that there is a lot of support needed, and a lot of work to be done there.

In all honesty, my expectation was that there would be no interest in what I was offering, but it was the other way around. We had such an overwhelming response from different people, particularly parents. They really want the training, in order to understand the needs of their children. The current system in place in Baku, approaches it from the perspective of ‘fixing their children’. Autism is a lifelong condition and cannot be medically ‘fixed’ and this approach causes devastation to families. It is mentally distressing to parents who believe their child will be ‘fixed’ through pills or sessions, to find they are not. It is important to share with parents correct information, that allows them to focus their energy on helping their children adjust to society. Broken hope is worse than a painful truth.

The training session was emotional, both for myself and others. I shared with them the story of my own children, and assured them that they should not condemn or blame themselves. One parent wept and wept.. At the end of the seminar, she came up to me and shared her many years of self condemnation and pain. She had had many thoughts about how she ‘broke her child’, wondering what she had done wrong, wondering if it was her diet when she was pregnant, and other distressing thoughts. She said nobody had ever told her that it was not her fault, and those meant to comfort her, her own relatives, blamed her for it.

It was an emotional time for me and touched my heart. The seminar became about so much more than just practical advice and day to day needs. I was able to offer emotional support and comfort… Some shared other problems, marital issues for example.

I asked what we could do for them that was possible in our capacity. I was asked if we can develop online resources, like perhaps a YouTube channel in their native language, also to stay in touch, and help with the content.  They also want a seminar like every quarter. I am not sure if this is in my capacity with geographical barriers and work and family commitments, but intend to work alongside them, helping them with this. Before the new year, my intention is to develop the content for some online training, and make some further preparations.

If you have any questions or comments please feel free to write, call or text

Blessings, Nial.

Tel: 0753 453 9566