Learning to be tomato

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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.

When you watch your child struggling

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It’s the end of term here in Scotland which traditionally means schools and nurseries relax the rules a little bit, organise sports days and school trips and have end of year awards ceremonies and graduations. Parents love them, teachers spend more time decorating rooms, organising teams and taking photographs of children than they do teaching, and social media fills up with post after post of proud parents posting of their child’s achievements. But for some children, my own two included, all these changes bring stress, anxiety and confusion.

My children don’t excel in sports, or academics. School trips makes their anxiety levels soar. And the relaxing of the rules is so confusing for them both.

So while parent after parent takes pride in their child winning races, telling them all the details of their school trip or enjoying all the wonders of this years school fair, I rejoice in the simple fact of my child taking part.

Isaac had his first ever sports day at his special needs school last week. I knew he had been preparing for it when his legs had even more bruises than normal on them and he came home upset. They sent me home a photograph of his assistant helping him bend down to pick up something in a race. I have no idea what else when on that day. But I do know he took part in some of it. And that makes me incredibly proud. He has no concept of sport, or competing, or what he was supposed to do. He would have been much happier running around the hall flapping in circles. But with constant support he took part. It was a struggle for him and his teacher. But they tried. And that was worth getting a gold medal in my book!

He had his first ever school trip this week. His class of five children went to the safari park. But his taxi arrived that morning and it was a different colour, and his beloved food catalogue wasn’t there as it was in the other car. No catalogue, wrong car and the added confusion of a ‘different’ day were all too much and it took thee adults to carry him into the taxi kicking and screaming. I should have stood outside the school gates waving him away on a bus like every other parent of a child in mainstream school. Instead I was still hearing his crying as the taxi pulled away from our street. My heart was broken seeing him struggle so much. And knowing he can not come home and share with me the joys and excitement of his day because he can not speak. He came home with three photographs in his bag. The tears of pride I had when he chose to sit on my knee and point to those pictures. That was worth the struggle to get him into that taxi.

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Naomi had her first sports day at nursery last week too. As all the other children independently came out of the class and down the three stairs into the garden she had to be supported by a member of staff. As all the others formed a line and filed into rows of seats she just stood there. She had no idea of the social ‘rules’ going on so could not follow them. She had to be seated on the last seat away from her friends. As the races began her face went paler and paler. As she watched children run across a small section of garden, she looked so lost and was huddled into the rows in front by staff and pupils alike like a little lost sheep just following the crowd. When it came to her race she never moved until the word ‘go’ was said and she ran as fact her little legs could go, which isn’t very fast at all. The others finished and the next group were all lined up but she wasn’t even at the finish line yet. The tears in my eyes were a mixture of sadness, pride and overwhelming love all rolled into one. The staff and parents cheered her on like she was one of their own. And finally she made it. The others full of energy while she was exhausted from just one short race. With difficulty and support she completed every race in a similar manner! Last by a long way every time. Thankfully there was no sack race or hurdles as she still can’t jump. As all the children received medals and had pictures taken there was a massive round of applause for my daughter as she stepped forward to get hers. We had all watched her struggle. And we all celebrated her victory.

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This week she struggled again. This time it was the nursery graduation. The hat and coat annoyed her so much. The noise of all the children and adults was so loud for her. The heat in the room made her feel sick. But she sang, she watched videos of everyone’s time in nursery, and she clapped for the other children receiving their certificates and school ties. All the while her face was getting paler and her hands were moving more in front of her showing her anxiety. As all the others jumped excitedly onto the made up stage she needed two members of staff to support her up. She stood at the top terrified. But she did it. I can not begin to tell you how proud I was of her. At that moment it didn’t matter one bit that she doesn’t speak there, or that she is still wearing a nappy, or that she has autism. At that moment in time I was so proud of her for getting to that point, for overcoming her struggles and taking part.

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Tomorrow we have Isaac’s end of term celebration at his school. I know he will struggle. But I know with support he will get through it.

It is hard to watch your child struggle. But it is even harder for them. Sometimes courage can be found in children who are trying hard to take part despite everything.

They say it is the taking part that counts. And even though Naomi has had nose bleeds, fainted,and cried with it all this week and Isaac has bit himself, screamed and gone deeper into his own world as a result of struggling with the changes end of term has entailed, they have both made me so proud.

I watched my children struggle. But I watched them overcome too. It’s been a year of struggles but also a year of breakthrough.
Life really is about taking part. Because for many children, like mine, that is an achievement all on it’s own.