As a parent, finding out that your child is going to be living in full-time medical care can be hard. Even though it is the right choice for the health and safety of your child and family, knowing how to support them is tough. There are many things you can do to make their medical care setting feel more like home, from personalising their room to sending in treats. Below is our guide to supporting a child in full-time medical care.
Make Contact Regularly
More than anything, your children want to feel loved, and giving them your time and attention will do just that. Although gifts are nice, there is nothing more special to a child than a daily phone call or a text from their parents, especially on days you cannot get into the care facility to visit. Make sure to call once a day if you can, if they are able to speak on the phone.
You can also speak to the nurses about setting up a video call, so a child with special needs can still see your face or hear your voice every day. Visit the home or hospital they are staying at as much as you can. Take part in their care and if there is anything you want to learn, speak to the nurses who care for your child. From feeds to medications, there are plenty of things that a parent can be taught to care for their child.
Send In Treats And Things To Do
On days that you cannot be there, it is nice to send in treats to let your child know you are thinking about them. The nurses can tell your child who the gift is from and when they spend a lot of time in the same space, it is good to have a bit of variety. Whether this is a new toy or their favourite snack, a gift basket will make them feel special.
There are plenty of things for your child to do in a medical care facility, such as colouring, painting, listening to music, watching a movie or TV show, learning a new skill, and playing with toys. Learn some other useful tips for entertaining your children in the hospital.
Take Them On Trips
Most medical care settings will discuss day trips with you, depending on the condition of your child. Getting the right medical equipment is essential for this and a lot of this can be given through the NHS. Speak to your care facility to find out more information. Hospitals will also have wheelchairs, portable oxygen cylinders, and hoists to get your child ready for a day out.
Research the best activity days for disabled children and get the whole family involved to make it extra special. You can hire a medical professional to come with you on the trip if it would make you feel safer, or some care facilities will staff the trip so you can take someone with you. When your child has a lot of complex needs, trips away from the medical facility can mean meticulous planning, but seeing their face when you get them outside is well worth the effort.
Look After Yourself
As a parent with a disabled or ill child, it can be easy to feel guilty for not giving them enough attention. If you don’t have transport or do not live close to the hospital or care facility, you should not feel guilty if you cannot see them every day. Sometimes a day spent at home is well-needed, or you may find yourself burning out.
Burnout can be difficult to recover from and will leave you feeling depleted. This makes it hard to give your love and energy to others, especially a child who has other medical needs. If you are struggling with feelings of guilt about taking time for yourself as a parent with a special needs child, here are some self-care tips.
Personalise Their Room Or Bed Space
Medical care settings aren’t always the nicest of places, especially for children. Whilst many facilities try to do their best to make the space child-friendly, at the end of the day they also need the space to remain sterile and appropriate for medical equipment. Speak to the care setting and see what you can do to make the room or bed space more personalised for your child. Some parents bring in flowers or balloons, whilst others add toys around the bedspace.
As most bed spaces have the name of the patient at the end, you may want to work with your child to make their own name sign. Take in your own blankets and cushions, anything that will make them feel more at home. You can take bedding and clothes home to wash, so they have a familiar smell. For special needs children, this sensory experience can make the medical care setting a little easier to handle.
Try adding lights that project over the bed if your child spends a lot of the day laying down. This gives them something else to look at, rather than staring at a white ceiling. Bring a toy that plays music or a radio, so your child has something to listen to. Give them some headphones if they are able to use them, so they don’t disturb the other children too much.
Be Vigilant
We all want the best for our children and if your child is non-verbal, you want to know that the nurses and doctors are giving your child the best care possible. If you go to visit and find that your child hasn’t been cared for properly, they are constantly needing changing or feeding, this may be a cause for concern. Of course, medical staff can be very busy, and understaffed hospitals sometimes lead to things going amiss, but if this is happening regularly, there is no excuse.
If you are concerned, check their body for marks or anything else untoward. Make sure the clothes you are taking in are being changed daily and start a diary of anything that troubles you as you go in. Speak to the hospital staff about this, it may just be a mistake.
Nurses and doctors have a duty of care to your little one, so you should seek professional support if you think your child is being neglected in full-time medical care. Hugh James can help you if you feel you have a case for professional negligence. You can find legal advice here or speak to one of their professional negligence lawyers. When it comes to the care of your child, negligent care is not something that should be ignored, as you do not know how many other children are experiencing the same neglect.
Supporting your child in full-time medical care is much the same as what you would do at home. Give them lots of love and attention and remember, the little things can make a big difference, especially when not living at home. Some facilities even have parent beds, so you can stay over and spend more time with your child. If you are still struggling, speak to a medical professional, as you need support too.
