The emotional side of helping children with special needs: how do you cope when you can’t do it all?

Hello everyone,

I come from a community where autism and cerebral palsy are still deeply misunderstood. Many families face blame, rejection, or even accusations of witchcraft. I’ve seen mothers abandoned, children hidden, and countless people suffer in silence, all because of stigma and lack of awareness.

Some mothers come to me in tears, begging me to take their children and care for them because they can no longer cope and it breaks my heart. I wish I could help them all, but we’re still a small initiative, just starting, with no funding yet to provide full time care. Sometimes I listen to their stories, see their tears, and I also feel like crying. Many parents don’t even know what autism is. Some ask me questions like, “But what exactly happened to my child? Will he be okay? Will he ever be like the other children?” Their pain is real, and so is their confusion and it stays with me long after our conversations end.

I know many of you have faced similar struggles, maybe in different ways or places. I’d love to hear:

How do you care for your own emotional health?.

For sure sometimes i feel like crying, Have you ever felt guilty for not being able to do more even when you know you’re already doing your best?

What do you say to a parent who asks, "will my child ever be like the others?" when you don’t have a clear answer yourself?

Parents
  • No child is ‘like the others’ essentially. That’s how I think about it - every child is unique and every child has immense value and potential in a multitude of ways. What and who  are we measuring our children against anyway? And why? If we stop comparing and simply focus on the wonderful qualities our children have we can free ourselves of so much negativity and worry. 
    When my youngest son started primary school lots of problems emerged because he could not thrive in that environment ( in fact he could talk at all in that environment) and what slowly developed was the realisation that the school were not going to provide my son with the help he needed. And therefore in time it became a battle between myself and the school where I had to constantly work on my child’s behalf to get him the help he needed. It wasn’t my son being autistic that was ‘the problem’ - the problem was schools and staff from the LA ( even CAMHS) who quite frankly didn’t know what they were doing, or didn’t want to help my son in a way that could enable him to be happy and thrive in the school environment. Dealing with the school was exhausting much of the time - and caused our whole family so much stress. It didn’t have to be this way - but sadly schools so often failed my son and made him feel deeply unhappy and lonely in school. 

    There is nothing ‘wrong’ with either of my children (they both have an autism diagnosis). They’re both wonderful, beautiful human beings who I wouldn't change for the world. I couldn’t ask for more wonderful children - they are the greatest blessing in my life by FAR. 
    Reading your post I felt very sad that some parents are feeling this way - possibly influenced by negative influences that they’ve unwittingly absorbed from the society around them. 

  • Thank you so much, Kate.

    Your words have truly given me something to learn and even answered some of the questions I’ve silently carried in my heart. I’ll be honest in the beginning, I sometimes blamed the parents too. I used to wonder if maybe they didn’t love their children enough. But the more I walked alongside them, the more I began to understand.

    It’s not that they don’t care it’s that the community around them often makes things unbearable.
    I come from a third world country where people still know very little about autism or cerebral palsy. When a child shows signs of these conditions, many are quick to judge. They say the child is or mother is cursed, that it’s a punishment to a mother may be for doing something wrong, or even the result of witchcraft.

    Around 80% of the mothers I meet have been abandoned by their partners left to raise these children alone. And even when they try to find love again, once a man discovers the child has a disability, he also walks away. So many of our mothers carry the weight of rejection, shame, and loneliness.

    What’s worse is that our government has done to nothing to raise awareness or fight the stigma. That’s why we see so much pain and misunderstanding.

    So again, thank you for reminding me that every child is unique, every child has value.

  • I can understand where you are coming from re: 3rd world countries, although I was born in UK, my family are from the Caribbean - autism isn't received very well. In Jamaica for example, if your child has a disability, parents are either in denial, accuse the child of having something wrong with them or the child goes to a mental institution.

    With black families in general most of them are very ignorant about disabilities (I know from experience with my extended family) and would prefer not to deal with the situation. Their idea of parenting often involves hiding certain issues and this is one of the reasons why I hate being black to be honest. I was lucky to have supportive parents who actually fought to get me the support I needed when being diagnosed with autism at 2 - however not everyone is lucky.

Reply
  • I can understand where you are coming from re: 3rd world countries, although I was born in UK, my family are from the Caribbean - autism isn't received very well. In Jamaica for example, if your child has a disability, parents are either in denial, accuse the child of having something wrong with them or the child goes to a mental institution.

    With black families in general most of them are very ignorant about disabilities (I know from experience with my extended family) and would prefer not to deal with the situation. Their idea of parenting often involves hiding certain issues and this is one of the reasons why I hate being black to be honest. I was lucky to have supportive parents who actually fought to get me the support I needed when being diagnosed with autism at 2 - however not everyone is lucky.

Children
  • Yes  - I agree Lina-chan. No one exists in a vacuum - and in some cultures and societies there is a lot of negativity and discrimination against things like disability and homosexuality etc - so it’s important to recognise that. People can be heavily influenced by the society and culture they have grown up in - and not everyone has the capacity to challenge the dominant narratives within their environment. Judging the parents does not help those children - whereas offering education and support (and remaining compassionate in the process) is a much better way to improve the situation.