Baby Illness and Disability
Nobody can quite comprehend how it feels to be told that your child has a disability or serious illness, until god forbid it happens to them. It has to be one of the toughest things that life can throw at you. My second child Joshua was diagnosed as being autistic when he was three.
Now, I don’t claim to understand the feelings of every parent of a disabled or seriously ill child, I know that there are many, many children with much more severe problems than Josh. But I found one of the most helpful things when Josh was first diagnosed was to read other parents stories, it made me feel less alone. So I wanted to share our journey with you…….
Joshua was born 7 years ago (at time of writing, being 1999), 18 months after his equally perfect sister Lauren. He was a wonderful baby reaching all his milestones when he should have. He was a sunny, chatty baby and a real mummy’s boy! We never had any problems until he was 23 months old he had a very severe bout of chicken pox (he had spots for over 4 weeks in every place imaginable). After that the Josh we knew disappeared and in his place was a very different little boy.
Joshua now cried a lot and had horrendous tantrums; we told ourselves it was the terrible twos. He stopped talking and we thought he was still feeling ill.
Coping with the unknown
We struggled to cope and didn’t know how to deal with Josh. I was so paranoid it was me being a bad mum and I was too scared to ask the health visitor. In fact it took me 6 months to take Josh to see her! When I finally did she arranged for us to see the paediatrician and then chastised me for talking about it in front of Josh. When we saw the paediatrician she seemed disinterested in what I had to say. She put in the notes that she was writing that “Joshua is a very negative child”, which felt like a slap in the face. He was obviously a very confused and frightened little boy. His tantrums were due to distress not temper and he lived in a silent world, unable to communicate. We needed a way to help Josh and until we knew what the cause of his problems were, we were powerless.
After that we heard nothing. So off we went to our GP (a fellow mum), who sat and observed Josh’s behaviour and agreed that there was a problem. She felt he needed to see the paediatrician again and said that she would look into it. The next day the paediatrician’s secretary was on the phone offering us an appointment. After a few sessions where Josh was given tasks (he completely ignored all attempts to coax him to do anything). He didn’t interact with anyone at this stage and it was clear there was a massive problem. By this stage I was convinced he was autistic after reading many books on children’s behaviour, in an attempt to find out what was the problem. The paediatrician said she didn’t want to label him, but that was her bloody job and by this stage it was so obvious that there was no doubt (sorry but that still gets to me).
Finally diagnosed as Autistic
When I was told Josh was autistic it was a relief, as awful as that sounds, I was sure that we would be helped now. My poor hubby couldn’t take it in. Many people reacted with “Oh I’m sure he’s not” or “He’ll grow out of it”. My mum and dad had seen first hand the extent of Josh’s problems and helped all they could. They even had the kids most Saturday nights and still do, saving our sanity and probably our marriage, what stars they are!
What we didn’t realise was that you have to fight for everything that you assume your child will be entitled to; such as help, support and an appropriate type of school. We are lucky that we have wonderful family and friends who understand Josh’s condition and love his “quirks” as we do. We have met some amazing, inspirational people in the form of the teaching staff at nursery, infant and junior school. These are the individuals who have helped Josh to become the (usually) happy and confident child that he is today.
We had to battle for a Statement of Special Educational Needs (SEN) which was a long, hard process. The statement has to be drawn up before your child can be given the learning support to suit their individual needs.
When Josh was finally settled and happy in his infant school and life seemed to calm down slightly, I had counselling to allow myself time to grieve for the life Josh was going to have before autism. I had spent so long fighting for him and being strong that I hadn’t had time for my own emotions. It really helped to get things off my chest. Now I can honestly say that I wouldn’t change things; as without autism he wouldn’t be “Our Josh” (or Shrek as we have to call him at the moment). That said I know we are lucky that Josh is fairly able and things could be a lot worse. My real fear is for the future when we are not around, what then? That’s the question that goes around my head in the middle of the night. We feel a lot of pressure to look after ourselves so that we can be relatively fit and able to care for him for as long as possible.
We are now at a good point in life. Josh is chatty and affectionate which we never thought he would be. We are immensely proud of all he has achieved. He reacts well to lots of praise and encouragement. He is learning to cope with life. With plenty of prior warning he can even deal with some changes, as autistic people are reliant on routine (we have to have such good memories, it keeps us on our toes!). We have also found that a sense of humour is a must. We try our best but we are not “Superparents”, we have our moments when we are rubbish.
Josh is very fortunate to have such a caring and helpful older sister. I don’t want to leave out Lauren who rarely complains and explains to strangers who tut or stare, in a far more patient and kind way than I ever could. She has taught us a lot about compassion and has shown a maturity and understanding way beyond her years.
We have come along way in the last five years, thank you for reading our story.
[ March 25th 2007 ]
Coping with an illness or disability
If you have a child with a disability or serious illness her are some steps to help:
- Don’t be too proud to ask for help. Accept help when it is offered.
- Trust your instincts – you know your child better than anyone else.
- Find out what help and support you are entitled to and fight for it. I know it is really hard to find the strength (and on a practical note, the time) to do this, but it will help you in the long term. Can you get a family member or friend to write letters, make phone calls, help fill out forms or find out information for you? People want to help.
- Try and find a support group. You will be able to talk to people who understand. You can also pick up some really useful information from other parents and carers and their tried and tested tips. Learning how others cope with the day to day issues concerning your child’s condition can be invaluable.
- Write down questions to ask at appointments beforehand. Very often I used to come out and realise I’d not asked something I wanted to know, as it’s so easy to be overwhelmed by all the information given to you. If you are going alone, then ask your partner or someone close to you if they can think of any appropriate questions too.
- Talk about your feelings, whether it is to family, friends, other parents, a counsellor or a helpline. The range of emotions you will be feeling are vast (especially at first); shock, sadness, anger, guilt and loneliness.
- Remember your other kids. Don’t underestimate the impact of having a disabled sibling on them. Praise them and give them as much attention as you can. If you can, take time out with them. Some organisations have information for siblings and organise family events, where they can meet other youngsters in the same position as themselves.
- Look after yourself. Eat as well as possible. Try to get some sleep (I know that’s virtually impossible). Can you get out of the house for half an hour to go for a walk? Fresh air and exercise can help you to function better and maybe keep you sane!
- Ignore stares and negative comments, people can be so rude and ignorant. Rise above it, you are better than that. It’s your child that is important not these opinionated individuals. I have had strangers come up to me in the street and tell me my son needs a smacked bottom! The National Autistic Society now do business cards with how autism makes children behave printed on them, to hand out to people. Maybe you could make some explaining your child’s condition.
- You can’t be perfect. You are doing your best, you are amazing. You may think that you can’t do this; you will find the strength because it’s your child.
Who can help with your childs illness or disability?
There is lots of places you can go or help, from the official channels, to support groups and charities. Here are just a few.
- Health visitor
- Social worker
- Citizens Advice >>
- Local Council >>
- To claim Disability Living Allowance and Carers Allowance or for more information on these benefits; you will need to go to The Department for Work and Pensions >>
- For support and advice visit Contact A Family >>
- The National Portage Association >> works with pre-school children who have special needs, in their own homes. It supports both parents and child.
- Alergy UK >>
- Arthritus Care >>
- Association for Spina Bifida and Hydrocephalus >>
- Association for People with Lower Limb Abnormalities >>
- Association of Wheelchair Children >>
- Asthma UK >>
- British Heart Foundation >>
- Clic Sargent >> (children’s cancer charity)
- Cerebral Palsy - Scope >>
- Cleft Lip and Palate Association >>
- Cystic Fibrosis Trust >>
- Down’s Syndrome Association >>
- Down’s Syndrome Scotland >>
- Epilepsy Action >>
- Juvenile Diabetes Research Foundation >>
- Mencap >>
- National Autistic Society >>
- National Blind Children’s Society >>
- National Deaf Children’s Society >>