Having a child with additional needs can bring a whole set of new challenges to life! Parents will often need to place a greater focus on caring for their child, and it is very easy for their own needs to be neglected.
A new beginning
The discovery that your child has an additional need can bring a level of shock or disbelief. As this news sinks in, you may go through a ‘grieving process’ that is similar to those who have suffered bereavement. Your expectations for relationships, education and careers choices may also take on a different perspective. The images and hopes for your family life have to be readjusted. The child you had dreamed of, has not arrived. Even though life may not be as you had imagined, you can start to create new hopes and dreams for your family -and think of this as a new beginning.
At this initial stage, you may know very little about your child’s condition, and many find it helpful to find out as much as they can about it from professionals, the internet and others in a similar situation. You’ll be surprised how quickly you become the expert on your own child’s needs and the best way to care for them.
Depending on your child’s condition, you may need to redefine the boundaries of what is acceptable behaviour. Consequences for unacceptable behaviour may also need to be altered to accommodate your child’s particular needs and level of understanding. Other children in your family will need to understand that what is acceptable for their brother/sister with additional needs may not be acceptable from them!
It is hard to watch any child suffer, but there is a deep pain in watching your own child suffer and feeling powerless to bring relief. There may be times when you wish life was different –when you might wish that there were ‘a cure’, or your child could be ‘normal’. You could be facing huge life-style adjustments yourself, like leaving full-time employment to becoming a full-time carer. During these tough times try to focus on the positives and unique joys in your family life rather than the things that are unchangeably hard.
If you are troubled by thoughts that perhaps you are in some way responsible for, or could have done more to prevent their condition, remember that it is normal for all parents to feel some level of guilt, but this is often heightened when the child has additional needs.
Families who have a child with additional needs often feel isolated. A recent survey from Contact a Family showed that 56% of parents questioned felt that the main cause of isolation was a lack of support from statutory services such as social care and education services. Depending on where you live, you may find yourself fighting to access the medical, educational, financial, practical and emotional support that you need. It is important that you find someone who understands this territory (maybe a Key Worker or a friend) who can you give advice, research what you are entitled to, help you make phone calls and generally help fight your corner.
Try not to compare yourself with others – remember that your situation is unique.
Sometimes other parents of special needs children may appear to have a greater ability to cope and this can make you feel inadequate. Try not to compare yourself with others – remember that your situation is unique. Many parents find that talking with other mums and dads who are in a similar situation to yourself can be very helpful. There is the opportunity to share experiences, joys and griefs, tips and advice and have the comfort of knowing that you’re not on your own.
Family time and time for yourself
Family life may be disrupted by constant visits to or from care professionals, and where your child has a more complex condition, parts of the home can begin to look and feel like a hospital. Things that once were relatively simple or spontaneous, like organising family outings, now need to be carefully planned. It is usually possible, however, to find a new way of doing things. Be creative in reinventing family time; it is well worth the effort you put in.
You may, at times, feel guilty that you don’t spend enough time with your other children, or that your additional needs child takes all your attention and focus. There are no simple solutions to this, but try, if you can, to see if family and friends can support you in allowing you to have individual time with each of your children. Meaningful moments matter more than the length of time spent. Try to remember the things that really matter to each of your children and make time to talk.
Taking time out for yourself is also important, not just for your own well-being, but for the good of your whole family. If you are exhausted and never have time to yourself you will have little physical or emotional energy left to give out to others. Identify your greatest need at this moment, and then talk about it with family members and friends to work out how this can be met. Your greatest need may be simply to catch-up on sleep, to spend time relaxing alone, or to have the opportunity for a drink with friends. It is surprising how these moments can revitalise you and give you the energy to carry on. It is good to ask for help when needed.
Learn to be delighted in the small things, like the unique ability your child may have to bring joy to others, or how their outlook on life becomes a contagious encouragement to those around them. With the right support in place you can look after yourself and continue to build a strong family.