Whether you are naturally inclined to be your child’s advocate or not, it’s important to learn about the resources that already exist. Having been in the social work field for so many years, I was able to navigate the systems that my son needed throughout his childhood in NYC. It wasn’t easy! It never is and it’s a continuous process that can often make you feel overwhelmed and hopeless without a good support system. Where to start once your child is over the age of 26? It depends on how far you have gotten so far and that is going to be different in every situation. Sometimes denial has slowed down the process. Parents are hoping for outcomes that might not be possible for their child. Promises are made by programs that make you feel very hopeful at times and there is a great let down if those promises can’t be kept because of your child’s limitations. It’s a set back for you and them. The continuous questions that are repeated over and over in the assessments is trying for your child and will trigger so many emotions for you. Some states have more resources than others. I’ve lived in 3 states and the disparity in resources is great. My son received autism services in one state but not another. Diagnosis is key and so often the adult child was misdiagnosed and misunderstood in their childhood making this all the more of a traumatic process.
We all have our stories to tell and those who listen often do not understands unless they have been through it. Raising a child is hard enough but raising an autistic child or a neurodivergent child means endless advocacy and trips to doctors, assessments and schools. Later as they get older the issues change. Each child has a different capacity for being independent. After many trials and errors and money spent, by their late 20s they might end up living at home. Transitional programs are great but sometimes the hope of a child being able to live on their own eventually is squashed and both the parents and the adult child feel disappointment and as though they have failed. Some parents work as a team but often, there is just one parent that is truly devoted to this adult child. As you age as a parent your ability to be effective lessens and the focus turns to the future. Where will your child end up when you can’t care for them anymore? That is an unanswered question for many. There are different programs opening up now throughout the US but they are prohibitively expensive. Taking action steps toward finding a solution will help and over time more options should be available for this population. In the meantime we have to continue to be resourceful, resilient and relentless.
