Skip to main content

If Becomes When

When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk, was not something we spent a lot of time contemplating. Avoiding this thought was easier.

Even if Ben did not walk, the future seemed a long way off.

Ben is seven now and the unknown future is here and more apparent.

The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging.

It means some of the hopes and dreams we had for Ben may not come to fruition.  We are saying good-bye to some of the dreams we had for Ben walking on his own.  We have not given up on the possibility of Ben walking, but the realities of a 43lb child being moved up and down stairs, lifted into the car or using a baby toilet for much longer are hitting us hard. I see that he will only get heavier and taller. I do not see some of those things changing. Even if Ben does walk on his own, his endurance will most likely be low.

My other fear is that as we rely on a wheelchair, Ben will get less practice in a walker and be less independent. Will we be giving up on him?

These are hard decisions and they require a lot of thought. I think I have been sad for awhile thinking about all of this. My sister asked a practical, seemingly benign question this summer while walking with Ben one afternoon, she said, "What are you going to do when he gets bigger?" She did not mean anything by it, but it struck a chord with me. I have thought about her question countless times.

What are we going to do? It scares me. Instead of putting my head in the sand, I will start looking into resources, funding sources and possibilities. Better to be prepared for what lies ahead.


Popular posts from this blog

Impromptu Pet Therapy

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Parenting an Adult Child with Disabilities

  "Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru