Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.
The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.
Then there is church too. After almost six years attending crèche the time has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.
Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.
We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.
Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.
At times it really has felt like the second one of the children cried we would be having yet another meeting.
Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.
But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.
But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.
Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.
I might just mention that in the next meeting I go to…