Down syndrome Awareness Day#16: Independence.
The road to independence is not for the faint of heart. With any child, this process is done in small, incremental steps throughout childhood. Although different communities and groups have different styles as to how this process is completed, everyone gradually trusts children with increasing responsibilities and independence knowing and accepting that they will make mistakes but allowing them gradual freedoms in order for them to learn and “test the waters.” By the time these children are young adults, they are fairly competent. They can go away to college, go out into the community to shop and socialize without adult supervision. In other words, they gradually join the adult community through this long series of years of little steps toward independence.
Individuals with Down syndrome need the chance to take those incremental steps toward independence.
Typically developing children make tons of mistakes. No one stops their forward progress over these mistakes. Children with Down syndrome must also have a right to continue to be pushed forward despite errors toward that coveted goal of independence.
How? Start the journey and move along systematically!
- Preschool age – children start to develop self-help skills such as walking, being able to partly dress, able to feed themselves with a spoon and fork and are potty training.
- Elementary school age – developing and refining skills that they have begun to master in the preschool years, such as becoming less messy at eating and drinking, improving their fine and gross motor co-ordination in writing, managing fastenings, hopping, jumping and becoming able to manage all toileting steps without any assistance.
- Teenage years – parents need to encourage further independence, continue to move away from doing things for their child because it is easier or quicker, teach more complex self-help skills.
- Adult years – Most young adults with Down syndrome canned should take care of their laundry and their domestic cleaning, they can make simple meals, they can take care of their personal hygiene, and they can take care of their own money in bank and savings accounts, with minimal support. It is often at this stage that young people become more independent in travelling in their communities, using buses and taxis.
Achieving the steps above requires a lot of effort, persistence, risk-taking, and learning from mistakes. I think the hardest part, as a parent, may be letting go and giving the space for the learning process to take place. Individuals with Down syndrome, like their typical peers, need to be allowed to make mistakes, and learn from mistakes. They need to be given the chance to take those incremental steps toward independence.
For more ideas check out DSE Online’s article on Social Development.
Peter’s Story –
Independence is our goal for Peter. How far he makes it is yet to be seen. Even the small steps listed above can be challenging. All of us that interact with Peter in some way have those moments were doing it for him is far easier and quicker than teaching him how to do it, and allowing for mistake after mistake, before he might master a skill. This is something all of us that spend time with him at home and at school need to consciously work on each and every day. We have a way to go, but we are working on it!
Peter adds a few complexities to the mix.
- He is a runner. Meaning “the world is my playground and I must discover it all, now!” He has no fear of the outside, so will just take off to explore his curiosity, without asking for help or company.
- He likes people to be happy around him, meaning “Gosh darn it, doing all those self-help skills slowly or making mistakes frustrates you. I don’t want you to be frustrated. I see how happy you are to do them for me……so I will let you keep doing it!”
- While Peter inherited his super extroverted skills from John, he inherited my complete and utter lack of coordination. Throw on what we think is some mild nerve damage from chemotherapy, and even skills that come to others with Down syndrome are taking him longer.
Our journey is not a smooth road towards independence. We, the adults that care for Peter, make more mistakes than he does at this point. But we keep working on it. We keep challenging each other to presume competence, and challenge Peter safely. There are have been some uncomfortable conversations with folks that gave up on Peter. We need to keep each other and Peter accountable for moving forward with this journey for a long and far as this path goes.
Peter needs to be surrounded by those who believe in his potential, and not judge him by his failures.