A couple of days ago we had our association meeting where we discussed psychological support to parents of children with developmental disabilities and rare diseases, which we would like to establish as a regular activity. Following a delivery of 12 workshops aimed at parents of younger children, we realized how difficult it was to prompt people to attend workshops and become dedicated to working on themselves and solving their internal issues and fears. All attention is normally directed at children and their therapies and potential ’cure’. We, older mothers, i.e. mothers of elder children, know from experience how important it is to start working on oneself and reconciling with the situation we ended up in.
RECONCILIATION DOES NOT MEAN GIVING UP. IN OUR CASE, IT MEANS ACCEPTANCE AND CONTINUING STRUGGLE IN A CONSCIOUS STATE.
It turned out that, although all questionnaires and research conducted so far indicated that there was a ’need for psychological support’ as one of the most important aspects of support to parents of children with developmental disabilities, parents most frequently were not ready to accept it when available.
Marina thought aloud about her journey of ’becoming open towards people with the same problems’ and achieving her own calm and reconciliation. She says that joining the SUPPORT GROUP FOR MOTHERS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES, ’EVO RUKA’ changed her life!
A lot of time passes until you decide to seek help.
My thoughts at the moment of realising that my child had a developmental disabilities issue was:
‘I must have done something wrong to have an autistic child. I hope nobody finds out. I’d better keep quiet and say I’m fine and I don’t need anything.
It’s my fault, and now I should suffer alone, without any help. She’s my concern and my responsibility. It’s her who’s important – whatever becomes of me.
What I’m going through is nobody’s business. I don’t need help.
This child is the most important thing in my life. Life isn’t at all easy.
I don’t deserve help, so I won’t seek it.’
When I started considering therapy in order to help myself, my thoughts were:
‘I’m beyond help.
I can’t afford it. I need money for speech therapy.
Why even bother trying if I cannot go on regular basis. Better not start at all.
I’ve got nobody to leave the child with, my husband works.
The therapist won’t understand what I’m going through. Who knows what the therapist will think about me? What if I cry there?
Who cares what’s going on with my child. They’ll listen because they have to. I’d better not bother them.
I’m just taking someone else’s time, who might actually benefit from it. I’m beyond help.’
Once I have joined the group:
‘Let others talk, I’m ok just listening.
I’ll reply briefly so as not to take time, there are people in more difficult situations than me here.
Wow, how brave these mothers are, I’d never dare say this.
Their problems are the same as the problems I have with my daughter; imagine, she’s not the only one doing that.’
And the day comes when your burden falls off your soul and melts through tears and words. You talk and cry and feel comfortable doing that because you’re in a safe environment, among people who share your suffering. You understand that you’re not alone and that they’re genuinely interested in your story. They absorb your experience and offer ideas how to solve problems. Your view on the world changes. The child is important, but you are important, too. Your wellbeing is important.
Let go of the burden whenever you can. You have things to say and there will always be someone who finds your words precious. You’re not alone or the only one.
Don’t waste time, join and be part of the support circle. There’s someone there waiting to hear your story.
Evo ruka Association organises a wide range of activities aimed at supporting and empowering mothers and parents of children with developmental disabilities. Support groups and psychodrama can significantly help in the process of untangling difficult feelings. So, feel free to contact us on social media or write us an email. You can only grow and heal once you become part of the community that can understand and support you.