My kid cried…let’s call a meeting

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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 tiimageme 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…

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The benefit of living with disability

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Disability can seems so negative at times: Professionals discuss what your child struggles with, doctors talk about what is ‘wrong’ and disability forms focus on all the things your child is not able to do. Education, health and social work see your child’s needs as ‘costly’ and therefore we have to fight for everything. Is it any wonder so many parents of disabled children struggle with depression and lack of enthusiasm?

I could easily join them. The lack of sleep, constant phone calls and paperwork and a diary full of meetings could steal the joy from me. The fact my almost 6 year old son has no speech and both him and his twin sister are still wearing nappies could have me begging my doctor for antidepressants. I could grieve for the children I dreamed of having. I could get bitter and angry at the injustice of it all. I could spend my days hiding from the world hoping all the children’s difficulties will disappear if no-one sees them.

But I can not go there. I have to keep my head above the water; for my sake and for my children’s sake. I am not writing this to make people think that disability is wonderful, nor am I writing this to make those who are struggling with the reality of life feel even worse. I am writing this for me: because I need to hear this everyday. On the days when I could run away, the days when my son screams endlessly and self harms, on the days when it seems we are getting nowhere fast. Even on those days there ARE positives. It is just harder to see them in the daily grind that is looking after children who require much more time and attention than others.

So here goes:

Benefit number 1: My heart is much more compassionate because I live with disability.
Not only is my heart more compassionate but so is my 5 year old daughter’s. She recently started school where two of the children in her class only speak Russian. There is no interpreter and naturally the children are struggling. Where other children are finding it challenging to understand the frustration and problems these children face my daughter has been a real friend to them holding their hand and sharing with them and communicating love without words. She struggles herself with severe anxiety and living with a non verbal brother she has had to understand the importance of non verbal communication so well. Her brother has taught her that love needs to words.
Before I had my children I thought I was a decent person. But there is something so humbling about facing a struggle yourself that opens your heart to others who are also struggling. Their struggle may be so different from yours but you understand that need for others to support you and help you. Living with disability opens your eyes to a non perfect world full of others struggling along too. And it opens a door into their lives because you can say ‘I understand’. And that is precious.

Benefit number 2: I appreciate life because I live with disability.
When you suddenly need health services and therapists, support workers and social workers, when someone else is willing to change your child’s soiled nappy for you; you learn true gratitude. Yes there are times when we have issues with professionals and we disagree on the best way forward. But the fact they are there to disagree with in the first place is such a blessing. My children could have been born into a country with little resources to support them and no suitable education available to meet their needs. Things may not be perfect but everyone who plays a role in my children’s lives suddenly becomes an angel to me. I appreciate feeling the wind and rain on my skin because there are families so much worse off than me for whom their disabled child is in hospital right now unable to feel that rain. I realise how blessed I am daily when I am in a world surrounded by children for whom every day is precious. Hearing of a child in my sons school getting ‘star of the week’ for simply opening his eyes is something that deeply affected me. Who am I to complain? I got to kiss my children good night tonight and that is precious.

Benefit number 3: I understand hope because I live with disability.
I used to think hope was dreaming of getting a well paid job and marrying someone tall, dark and handsome. Hope was looking for a better future and the positive feeling that things would always get better. But when you live with disability hope goes much deeper. Hope for me is seeing my son struggle daily to try and communicate without speech but still in the midst of that believing one day he will be able to say real understandable words. Hope was hearing doctors say they had no idea when my son would walk but buying him shoes to wear knowing one day he would have them on his feet when he walked in the garden. Hope right now is buying a t-shirt in his size in anticipation that one day soon he will want to wear something other than his beloved red school jumpers. Hope is never giving up. Hope is believing my children can achieve and stirring others into that confidence too. Hope is precious.

I could write so many more benefits. I could talk about all the amazing families I have met through being catapulted into the realm of disability. I could mention the charities who have supported me and how this has changed my entire outlook on giving to others. I could talk about how my circle of friends has increased greatly through having disabled children, how having disabled children has helped me be a better, more emotional writer. But these are all for another blog. And another day.

I just want you to know that even when things are so tough and real issues scream at you in the face daily, there is always hope. We can appreciate life and open our heart to others. My children are making me a better person. Even in their struggles there are so many benefits to living with disability. I just need to remind myself to keep on looking for them daily.