As the parent of a child affected by severe intellectual disability, you will at some point think about placing him or her in a residential home such as LITTLE EDEN.
It’s never an easy decision. You may feel that no one else will love and care for your child the way you do. Or you may worry that others will judge you. You will inevitably judge yourself, and feel guilty for passing the responsibility for your child’s wellbeing onto someone else. Especially when you hear comments like, “I just couldn’t live with myself if I ‘gave up’ my child.”
Early days
Initially, most parents cope well. We expect a new baby to take up a lot of time and effort. So, caring for a baby with Cerebral Palsy or some other form of intellectual/physical disability is not so very different. Lifting a 10-15 kg toddler in and out of the bath, wheelchair, or car seat is manageable. But the same can’t be said of a teenager weighing 45-50 kg.
Children with severe disabilities – those who cannot walk, talk, chew, feed themselves or use the bathroom – need constant care and supervision … for the rest of their lives. It’s a daunting prospect for the primary caregiver. Keeping your child at home means you can expect to feel exhausted – physically and emotionally – all the time.
Is this the right decision? You’re not superhuman. There’s only so much you can give before you become completely drained. If you decide to keep your special child at home, it’s vitally important to take breaks from time to time, to recharge.
What about other family members?
You also need to ask yourself if this is fair on the rest of the family. If you have other children, are they getting the attention they need? Are they reluctant to have friends over? Do you only go to places that are suitable for children with disabilities? Are family trips to the movies just never going to happen? Is it right to chose your special child over the others?
And what about your spouse? Are you neglecting his or her needs? Are you on the same page regarding the decision to keep your special child at home with you, rather than placing him or her in residential care?
Day care for children with intellectual disability
If you’re not ready to place your special child permanently in a residential home, enrolling him or her at a day care centre is something to consider. Apart from freeing time for you to get on with other tasks, or just enjoy some essential ‘me’ time, it also gives your child an opportunity to enjoy a different, and possibly more stimulating environment. Being able to interact with other people – carers and children – allows your child some small measure of independence.
If you have other children of school going age, establishing a family routine where all the kids go to ‘school’ during the day, is hugely beneficial. Depending on his or her level of ability, your special child will appreciate being included in the routine, instead of being the only one to stay at home every day.
Click here for a list of special schools and care centres.
Residential care for children with intellectual disability
The goal of parenting is to prepare our children to live independent lives when they reach adulthood. Sadly, your child with profound disabilities will never be able to live independently. He or she will always need care. But you will not always be around to provide it. You will get older and weaker and eventually die. That’s why it’s so important to plan ahead and place your child in a suitable care facility long before any of this happens.
It takes time to prepare your child for the changes that are coming and to help them settle in to their new home. Being able to visit, and take them out occasionally for the day or weekend, helps make the transition smoother, and reassures your child that he or she is not being abandoned.
Opportunities for an enriched life
Homes like LITTLE EDEN offer a level of care that may not be possible at home. Compassionate and dedicated carers are on duty 24/7. In addition we offer stimulation and development programmes, equipment and therapies aimed at enriching the lives of children with profound intellectual disability. You may be surprised to find that your child’s level of ability improves beyond what you thought possible, owing to their exposure to water therapy, speech, music, occupational and physiotherapy, horse riding and customised standing and walking frames.
At LITTLE EDEN, we find that even children with profound intellectual disability are able to make friends and enjoy the company of other children, or the interaction within a singing or music group. Although they will never live independently, they are able to achieve a sense of independence within a safe community of other children with similar limitations. Perhaps they find comfort in sensing that they are not alone in their disability, but that there are others just like them.
Parents who have opted for full time residential care
If you are struggling with feelings of guilt or anxiety about placing your child in a Home, you may find encouragement in the experiences of one of our parents.
“We fetched Leslie from the farm on Sunday and as usual he was so happy to see us; he could not wait to get to the car. He was so full of joy and was so well taken care of – clean, fresh smelling, nice hair cut, dressed to the nines.
“Then, as always after lunch, not having a perception of time and happy to have seen us and been home, he points to the car and says “home”.
“Getting back to the farm, he greets the sister with a hug and a loud, “Hello sister.” He dashes off to his friends in his section without even a backwards glance at us. We go around to the day room, and he will come outside to hug and kiss us goodbye. We leave the farm with such gratitude and love towards the staff who give our son the best of their time and care.
“Thank you also to the kitchen staff – knowing Leslie’s special requirements, they take such good care to prepare the right food for him.
“You will never know what it means to us to know our son is taken care of in this wonderful safe haven surrounded by people I am convinced God chose to care for him. Thank you and God bless.”