Dealing with guilt when your child has special needs

Childhood disability expert, Peter Rosenbaum, gives advice on coping with the delicacy of raising a special needs child.

Photo: DenKuvaiev/iStockphoto

Got the guilts? Me too. All parents feel guilty for a smorgasbord of offenses–from allowing too much screen time to serving too few veggies. But having kids with complicated needs can supersize the guilt factor.There’s always another therapy, medication, program or diet that just might help our kids. If only we had unlimited time, energy and funds. 
 
When I gave a self-care workshop at an autism support group, one mom said, “I feel too guilty to do anything for myself. I can’t buy myself a cup of coffee because that money could have gone to my kid’s therapy.”
 
So what’s a guilty gal or guy to do? For insights and advice, we spoke to Peter Rosenbaum, Professor of Paediatrics at McMaster University and Canada Research Chair in Childhood Disability.
 
What do parents of kids with special needs feel guilty about?
 
All parents feel guilty about something. Parents of kids with chronic developmental or biomedical challenges have more complicated or challenging lives. They have to make more complicated parenting decisions. Framing it in this way (instead of guilt) is a more generous way of thinking about it.
 
Why do parents sometimes feel guilty about their child’s therapies and treatments?
 
Sometimes professionals can contribute to these feelings. Parents can feel judged by how well their kids are doing. In some situations, parents are told that the success of the treatment depends upon them.If parents have a child who is really impaired and all the therapy in the world won’t make much difference, one can layer the guilt easily. They are made to feel if their kid isn’t making progress, then they aren’t doing their job properly.  
 
 
What should parents do if they feel overwhelmed by the therapies they are asked to do by professionals?
 
Negotiate with professionals about what your particular tolerance is. There are times when there isn’t time for negotiation–For example, if your child need medication for seizures. We can discuss how to fit this in and make it happen. For a lot of what we do, there’s room for discussion and negotiation.
 
How do you convince conscientious parents to also take care of themselves?
 
I always ask moms (moms do most of the work) how they’re doing and they say “I’m fine–don’t worry about me.” But I tell them that their well-being is important for their kids. Giving parents permission to be concerned about themselves in order to help their kids, helps them overcome the feeling that they need to devote 100% of their energy to parenting.
 
How would you describe balance for parents?
 
It’s like balancing a bank account. If you have a dollar you can spend it or save it. How are you going to balance your energies to meet what are sometimes the competing demands of the child, couple, family and your own parents? Life is full of challenges and decisions. There are more imposed on families that have a child with complications.
 
Any other advice for parents who are feeling guilty or overwhelmed?
 
Balance is individual. Give yourself permission to take a deep breath and have a glass of wine. Maybe do one less session of therapy in order to do something that will give you more energy for tomorrow’s session. There’s no easy answer.