I am blessed to have a beautiful house. It has bedrooms, a kitchen, a bathroom and a family room. It has walls and a roof and doors. I pretty much get to choose who enters my house and I can choose to close the curtains and blinds and doors and have privacy whenever I wish.
Yet in so many other ways my life is open to all, in full view and often seems like my every move is on show. In so many ways I live in a glass house.
When my children were young babies one of them was not gaining weight as fast as they should have been. We were scheduled to have a home visit every single week by a public health visitor for the first year of my twins life. An entire year of having someone see your children at home every week. Some visits lasted up to an hour. The only concern was my daughter’s weight yet our home had to be opened for unexpected visits at all times. That was the start of one wall of my house turning to glass.
By the time my twins were 18 months we had our first referral to community paediatricians. This put us ‘in the system’ and started more home visits by speech therapists, learning support staff and nurses who all entered my house regularly. I felt like I was on show having to keep my house fit for visitors at any time while trying to raise two very young children. A second wall of my house seemed to quickly be changing to glass for everyone to watch how we were living, playing and raising our children, all because they were not reaching milestones as everyone else felt they should.
Eventually the children began nursery and we were expected to attend courses about parenting and autism and attend regular meetings with the nurseries. As wonderful as it was to learn it also opened my family up to more people, and every interaction with our children had to have a purpose and a goal and we were even videoed several times in our own home. Sometimes it really felt like we were animals being watched in a zoo by all the professionals. A third wall of my house had now changed from brick to glass. As more people saw into our lives it got hot at times and stressful. It felt like there was such a lack of shade and privacy at times.
Three glass walls are hard to handle but while one remains brick and the roof remains covered there was still time to be alone. That is until the children started school. In order for their needs to be fully met we had to enter the new arena of school support. This meant multiagency meetings, school meetings, parents nights, school diaries and homework. Right before our eyes the last of our walls changed from brick to glass and our every move seemed controlled by our children’s difficulties.
Now we are in the realm of requiring more support. As the children have grown and their needs increased things like respite, befriending and budgets are now being banded around. Where you aware of how much of your life requires to be put on the line in order to access these things? There is no ‘sign here’ and we will give you it. Assessments are thorough, long winded and often extremely personal. You have to become vulnerable, lay yourself on the line and be scrutinised constantly. You have hoops to jump through and boxes to tick. In doing so the roof of my house, my only privacy and shade left, suddenly became made of glass too.
So my beautiful house has changed from bricks and mortar to a hot, cramped and open-to-all glass house. In order to help and support my children so much of my life and privacy has had to be sacrificed.
So how do we support them through this when our house has constant professionals visiting and calling and we have so many forms to complete? How do I enable them to have a childhood free from stress and invasion when so many people are involved in their care? How do I cope living in a glass house due to my children being disabled?
We are learning to be tomatoes!
We need the support of schools, nurses, occupational therapists, social workers, speech therapists and others besides in order to fully support our children. That means opening up our home, our lifestyle and our ways to many people. So we are going to use this to our advantage.
Tomatoes thrive in a glass house. While everyone watches on they grow, mature and become ripe due to the intense heat and pressure of living in that environment. Tomatoes are sweet, balanced and healthy despite being subjected to intense heat. They are versatile and popular.
Glass house living when you are raising children who have challenges is difficult, but by becoming tomatoes we can use our unusual circumstances to refresh others in many ways from soups, drinks, sandwiches or even tomato ketchup!
Sometimes I feel cut up or squashed but however you look at it I am blessed.
I am blessed to live in a beautiful house even if at times it seems like it is made of glass instead of bricks.