Designing a Future for a Child with Special Needs

Designing a Future for a Child with Special Needs

Making decisions for others is never easy. In fact, it’s probably one of the hardest things one can do for someone, especially if that person is their child. When a family is coping with mental illness and intense special needs and a parent is charged with not only choosing interventions to support what a child’s life will look like as they grow but also what their adulthood will look like long after they themselves are deceased, the challenge becomes overwhelming. The alternative to not making the decision to support the child and instead controlling them dis-empowers the child who might then lash out and become more oppositional and self destructive the more a parent insists on them conforming.

The emotional weight of making choices for someone else can cause a tremendous amount of anxiety and stress not to mention an underlying feeling of dread.

Perhaps the hardest part about making the decision about what your child’s future will look like is accepting that it isn’t going to even slightly resemble what you dreamed of when you fantasized about their life. If you are like me, that included typical milestones like dance recitals, graduation ceremonies, walking the wedding aisle and holding grandbabies.

Often when our children are struggling to keep their heads above water, maintain appropriate behaviors and perform in socially acceptable ways, there are rarely those extraordinary ordinary moments like congratulating them on their first job or the joys of helping them to decorate their first apartment. A large percentage of the time, they will never live independently or be able to keep a job. Sometimes they will continue to self destruct into their adulthood needing even more intervention for potential addictions and behavioral disregulation.

”What would my daughter want her home to look like?”

“What kind of services must be there?”
”What level of confinement or independence will be afforded to my child?”

“What if my child becomes oppositional? What is the discipline policy?”

“Will my son be safer in a single sex environment?”
”Will there be enough security to keep my child safe from eloping or from other potential self destructive tendencies?”

“What if my child hurts someone else? Will she be kicked out of the program? ”

”What if I make a choice that my child won’t be happy with?”

“What if the program loses its funding?”

“What if my child turns a corner on their illness and finds a balance of wellness? Can he unravel my decisions? ”

“What if I choose a location or a home for my child that is compromised by someone else long after my child is there?”

“What if…what if…what if…”

As anyone would fantasize about what their future might look like, trying it on for size in one’s imagination is the first step. Again, imagining it in one’s head is quite a bit different than realizing it in the flesh. Like fantasizing about getting the perfect pet, a first home, and having a perfect relationship, we often find that the journey from A to B can also include a dog that chews everything in sight, a home next to a nasty neighbor, and a mate who would rather watch football than spend time together on a Sunday afternoon.

How does a parent plan for this? What kind of setting can one imagine that can address all of the probables, no less the possibles in the future life of a child they love so deeply?

The first and most important factor is that, as parents, we make decisions only with our child’s best interests at heart. Trusting that the universe will help when there are bumps in the road and planning for all of the potential hairpin turns of their yet-to-be-realized adulthood is nothing short of the most loving and selfless decision a parent will face.

Sometimes decisions made in a vacuum work to relieve the underlying discomfort, but often they only serve to support the regret a parent will no doubt feel if they turn out to be the wrong ones.

Choosing to design a life for a child rather than empowering them to choose their own seems antithetical to the whole purpose of parenting. We spend our adult lives loving them, keeping them safe and raising them into character-filled individuals who will stand up for what they believe in and then leave our homes with full intention to change the world they live in. Planning for anything less than our children having more fulfillment and success and life and love in their lives than we had in ours might feel like a disappointment. Perhaps you have wondered how this could be anything but the case, but with time and much heartfelt soul seeking, I have realized that as much as all of our lives are different, so are all of our expectations and even though I’m creating a blueprint for my daughter’s life, it’s no less a disappointment to her than it would be if she had the capacity to create it for herself.

Finding a home and choosing a foundation to support our children when we can no longer serve them doesn’t have to feel like a disappointment to them. In fact, while our children were swimming upstream in their lives, in the homes we can create for their future, they will not be against the current. There will be flow. And in that flow, will be the success that they will come to know in their contented adult lives.

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