Shane and myself, Linda, have two very special boys, Sam who has just turned six and Callum who is nearly four. The boys both have a not-fully-diagnosed impairment that is severe muscle weakness. It means that both boys are unable to do anything for themselves. A way to picture them might be as rag dolls, but that is not them.

"We live each day to the fullest we can."

While the boys are confined to standing frames or wheelchairs and they cannot speak, they can take part in plenty of activities. They love riding for the disabled. We take the boys to the beach, they love the water. We go to parks, kids' fairs, movies and other children's entertainment. We are giving the boys plenty to stimulate them. Every Saturday I take one of them into town to have new experiences, so we are well known in our town.

"We are all on a learning journey and we are always experimenting with possible means of communication and ways Sam can physically extend himself safely."

Sam goes to a special needs school and has his own teacher aide. While he can't talk he can certainly communicate. He has a great sense of humour and is right out there, interested in the world around him and trying to get involved. "He can communicate his needs and wants with his eyes, he can easily convey yes and no."

At home we know he can recognise letters and we are experimenting with him spelling words of things he wants. Because he is unique, we realise it is going to be us recognising the way forward for him and then bringing the school on board so that they extend their expectations of what he can participate in and achieve. Callum goes to a special needs playgroup and that's a great time for him.

It's a similar journey to get the right equipment for the boys. We need to have standing frames, wheelchairs with full headrests, boots, and splints all customised for them. It's a matter of trial and error.

I have to take a lead role in getting people to modify the equipment until it works well for Sam and Callum. I go onto the internet and see what is available overseas and try to get it made here. We need people modifying equipment to step out of the ordinary and be creative, as the boys' needs are pushing boundaries.

We have carers for the boys. Each boy gets eight or nine hours care a week. It has been a struggle to get suitable carers. There is lifting involved, and a need to understand some medical procedures like using tube feeding and administering oxygen. We need to know the boys are safe with the carers. We have been given carers with bad backs, some who are very young, in their first job and with no experience of severe needs. Sam has had bones broken by carers who were not careful with him. In the end I went out and found a great carer for Callum, and persuaded our service provider to employ her. She is a woman with a family of her own who Callum adores.

I use the carer time to do a small part-time job, delivering circulars. It's great - it gets me out in the air and is, literally, 'a breath of fresh air'. There's not a lot of money in this family. My husband is on an Invalid's Benefit and we get Family Assistance and a Disability Allowance for both boys. I contribute $80 a month from my circular delivery job. We received some financial assistance to have our house modified for the boys. We need things like wheelchairs, hospital beds, hoists, oxygen machine, feed pumps etc. We applied to get a modified van from Lotto and, believe it or not, we got the hoist but not the van. Our family helped us purchase the van and we are paying back a loan to them, but the van lets us get out and about as a family.

We live in the now, each day that passes we are blessed with another day with the boys. We nearly lost both of them before they were three years old and they have exceeded medical life expectation predictions.

It is surprising in this world where we need to apply for funding and benefits how significant it is that the medical profession can put a name to a condition. We live in a 'compartmentalise and tick the box' society and when you don't fit neatly you are difficult. Another example is our request for respite care.

There is no respite care in Northland. When we realised that we needed a break away from the boys there just was nowhere here they could be placed. Options suggested to us included Sam being placed in a rest home. How could you leave a six-year-old with rest home staff who aren't trained to deal with a young boy with his specific needs?

"What would be wonderful would be a 'one-stop-shop' care provider instead of having to work through a large number of providers. Currently we have dealings with 14 different organisations."

It was suggested we could pack the boys in the van and drive the three hours to Auckland and place the boys at Wilson Centre Family Unit for a night off then drive back home to Whangarei the next day!

I took the initiative and we have found a way to use our limited respite care allowance that works for us. Because of the need to rely on specialised equipment in our home, it is practical that a carer comes to our home and we have some overnight time way. We now have two carers, one the local district nurse who comes in once a month on Saturday morning and leaves early Sunday evening. Having someone with nursing training who is very experienced and gets on really well with the boys means I can take a break knowing that they are safe.

My husband is on the Board of Trustees of Sam's school. I go to Parent to Parent meetings and I'm part of the Down syndrome group up here. It's a group of parents with higher needs children, not just for parents of Down syndrome children and I get to share our concerns with other parents. We all get to share practical advice.