Advice

INSIGHT

An autistic child in the family

An anonymous parent shares her story as part of Positive Parenting's parent-to-parent advice on special needs children

I’m going to try to share what the effects of having a child with autism has meant for me, my husband, my other child and our home. We’ve experienced many emotional and stressful effects, as well as love and joy, conflict and pain, destructiveness and togetherness.

In the early days, I felt very lonely. I felt no-one believed my concerns and I hid a lot of my anxieties. I decided to enjoy my baby/toddler while I still could because I knew that our future was going to be so very different to the one I had 'planned'. I wanted my children. I felt so angry. I would look at other families and think to myself: 'why us'?

I had to find an opportunity to show my husband the ‘differentness’ of our child. I remember it came at a party. A group of about eight similar age children were playing on a large climbing frame in the garden. All the children were having great fun playing together - except that our son, while enjoying himself too, may just as well have been on the climbing frame all by himself!

My husband was just the first of a whole host of people, including too many professionals, I had to convince because I had recognised my son’s autism so early. All through this time I was dealing with my own feelings of denial and self-doubt.

Once it was more or less established that our child was autistic, we had to cope with feelings of great sadness as we did our best to come to terms ... I remember the tears flowed. Uncontrollable tears for our present sorrow and fears of a frightening future.

My way of recovering control was to focus on the practical realities of daily life - of contact with professionals and the mountain of paperwork. Decisions to be made! At first I felt the weight was firmly on my shoulders. I felt what I decided would affect each one of us forever. I worked hard to find out what would suit our family best.

Taking care of our relationship

At the same time I knew it was essential for my husband and I to find some time to share - not only the facts of everyday living but also to talk through our feelings, so that we could stay in touch with each other. We tried to be tuned in to recognising stress in each other and be ready to take over the reins of caring for our son when things got a little fraught.

We tried to make it possible for the other child to have space to take part in outside interests. To meet and spend time with other adults also helped us. We knew it was important to explain as much as we could to our other son, in ways he could understand. Together, my husband and I agreed a course of action and then fought for the resources we needed so desperately.

Joining a support group

We found it was essential to join with other parents in a support group. It wasn’t easy to go along to start with but the benefits to each member of this family have been great. We now know other families in similar situations to us. We’ve gained from the pooled wisdom of many and have enjoyed some of the facilities offered by the group.

The other child

My older boy had always wanted a brother and had been eagerly looking forward to the time when they would play together. It has never really happened. Instead he has had to come to terms with the fact that there are two agendas of acceptable behaviour in our home. In effect he has grown up like an only child - without the benefits.

His parents’ time and energy are taken up with managing a difficult, demanding, destructive and vulnerable younger brother. I can remember making a conscious decision to do my best to see that my elder son had as many opportunities as possible to live his life to the full. So we help him get out and about, give him a chance to make and keep friends; have friends home for tea, play and sleep-overs. No matter how much hard work it makes for us - after all, we chose to have children - he did not choose to have a brother.

The extended family

I feel my eldest son also carries the hopes and expectations of all the extended family upon his shoulders. He doesn’t have a brother to share this - or any future problems with parents or grandparents. The wider family already hope he will go to university, climb mountains, make beautiful music and play for England! It’s a lot to carry.

He’s not aware of all this yet but I’m conscious that he’s without an ally, a rival, a friend - someone with whom blood is thicker than water. Instead, the family have responded by giving lots of attention and by spoiling him with material things - thinking that, in some way, they’re ‘making up’ for his brother and the difficulties that brings for the family.

Effects on our home

Of course our home has suffered heavily. Faeces have been smeared everywhere, furniture has been ripped and has had to be replaced again and again, electrical goods have been damaged beyond repair.

As in a normal home, I cannot be there with him all of the time and so locks have had to be put on internal doors, in a damage-limitation exercise, to try to keep him safe. We raised our mortgage to add a room on the house specially for him. He has a safe place to play but the downside is that we have a separated family.

But, despite all this, we are still a family and do things together as much as we can. It’s not easy, we may have to make special plans and emergency arrangements but we can go on walks, go to the cinema, go for cycle rides and we take a holiday by the sea every year.

We have all had to find a way of coping with the autism that affects us all and have learnt how to support, love and care about each other so we can remain intact as a family. By loving and caring about each one we’ve found the joy in our daily lives.

The writer of this article wishes to remain anonymous

Produced by Positive Parenting Publications
First Floor, 2A South Street, Gosport PO12 1ES
Tel: 01705-528787 Fax: 01705-501111
e-mail: info@parenting.info

© Christian Family Network
is run by CPO, supported by
Care for the Family, Marriage Resource, Positive Parenting,
Care, Women Alive, Christian Herald and many others.


		INSIGHT An autistic child in the family An anonymous parent shares her story as part of Positive Parenting's parent-to-parent advice on special needs children I’m going to try to share what the effects of having a child with autism has meant for me, my husband, my other child and our home. We’ve experienced many emotional and stressful effects, as well as love and joy, conflict and pain, destructiveness and togetherness. In the early days, I felt very lonely. I felt no-one believed my concerns and I hid a lot of my anxieties. I decided to enjoy my baby/toddler while I still could because I knew that our future was going to be so very different to the one I had 'planned'. I wanted my children. I felt so angry. I would look at other families and think to myself: 'why us'? I had to find an opportunity to show my husband the ‘differentness’ of our child. I remember it came at a party. A group of about eight similar age children were playing on a large climbing frame in the garden. All the children were having great fun playing together - except that our son, while enjoying himself too, may just as well have been on the climbing frame all by himself! My husband was just the first of a whole host of people, including too many professionals, I had to convince because I had recognised my son’s autism so early. All through this time I was dealing with my own feelings of denial and self-doubt. Once it was more or less established that our child was autistic, we had to cope with feelings of great sadness as we did our best to come to terms ... I remember the tears flowed. Uncontrollable tears for our present sorrow and fears of a frightening future. My way of recovering control was to focus on the practical realities of daily life - of contact with professionals and the mountain of paperwork. Decisions to be made! At first I felt the weight was firmly on my shoulders. I felt what I decided would affect each one of us forever. I worked hard to find out what would suit our family best. Taking care of our relationship At the same time I knew it was essential for my husband and I to find some time to share - not only the facts of everyday living but also to talk through our feelings, so that we could stay in touch with each other. We tried to be tuned in to recognising stress in each other and be ready to take over the reins of caring for our son when things got a little fraught. We tried to make it possible for the other child to have space to take part in outside interests. To meet and spend time with other adults also helped us. We knew it was important to explain as much as we could to our other son, in ways he could understand. Together, my husband and I agreed a course of action and then fought for the resources we needed so desperately. Joining a support group We found it was essential to join with other parents in a support group. It wasn’t easy to go along to start with but the benefits to each member of this family have been great. We now know other families in similar situations to us. We’ve gained from the pooled wisdom of many and have enjoyed some of the facilities offered by the group. The other child My older boy had always wanted a brother and had been eagerly looking forward to the time when they would play together. It has never really happened. Instead he has had to come to terms with the fact that there are two agendas of acceptable behaviour in our home. In effect he has grown up like an only child - without the benefits. His parents’ time and energy are taken up with managing a difficult, demanding, destructive and vulnerable younger brother. I can remember making a conscious decision to do my best to see that my elder son had as many opportunities as possible to live his life to the full. So we help him get out and about, give him a chance to make and keep friends; have friends home for tea, play and sleep-overs. No matter how much hard work it makes for us - after all, we chose to have children - he did not choose to have a brother. The extended family I feel my eldest son also carries the hopes and expectations of all the extended family upon his shoulders. He doesn’t have a brother to share this - or any future problems with parents or grandparents. The wider family already hope he will go to university, climb mountains, make beautiful music and play for England! It’s a lot to carry. He’s not aware of all this yet but I’m conscious that he’s without an ally, a rival, a friend - someone with whom blood is thicker than water. Instead, the family have responded by giving lots of attention and by spoiling him with material things - thinking that, in some way, they’re ‘making up’ for his brother and the difficulties that brings for the family. Effects on our home Of course our home has suffered heavily. Faeces have been smeared everywhere, furniture has been ripped and has had to be replaced again and again, electrical goods have been damaged beyond repair. As in a normal home, I cannot be there with him all of the time and so locks have had to be put on internal doors, in a damage-limitation exercise, to try to keep him safe. We raised our mortgage to add a room on the house specially for him. He has a safe place to play but the downside is that we have a separated family. But, despite all this, we are still a family and do things together as much as we can. It’s not easy, we may have to make special plans and emergency arrangements but we can go on walks, go to the cinema, go for cycle rides and we take a holiday by the sea every year. We have all had to find a way of coping with the autism that affects us all and have learnt how to support, love and care about each other so we can remain intact as a family. By loving and caring about each one we’ve found the joy in our daily lives. The writer of this article wishes to remain anonymous Produced by Positive Parenting Publications First Floor, 2A South Street, Gosport PO12 1ES Tel: 01705-528787 Fax: 01705-501111 e-mail: info@parenting.info © Christian Family Network is run by CPO, supported by Care for the Family, Marriage Resource, Positive Parenting, Care, Women Alive, Christian Herald and many others.