The Journey of the Parent with a Special Needs Child

I think it’s time we acknowledge the internal emotional experience of a parent of a child with special needs. This is a journey, and there are times when you will feel traumatized or in disbelief with your experience, and times when you wish it would ‘all go away.’ As professionals, we spend a great deal of time providing information about ‘how to’ or ‘how to not’ and instead, I’d like to focus on validating your feelings and thoughts. I’ll describe this in terms of the phases that you are likely passing through or have passed through.

Insurmountable Guilt

It’s not easy to seek the support of a professional, perhaps due to fear of being judged or criticized or perhaps because you are not ready to ‘go there.’ This is why you may seek the support of friends or other parents of children with special needs. However, there are times when you may want to seek the help of a neutral person who can help you reflect on your inner most emotions and experiences, regardless of how ‘un-mommy like’ they may be. It’s okay to admit to yourself, and out loud to another person, that this is not what you planned for, this is not how you wanted motherhood/fatherhood to be, that is not what you wanted. It has become my mantra to assure parents that it’s okay to feel that the last X years are unfair to you, or that you’re tired and you wish for a different experience in parenting. This does not make you a ‘bad’ parent or a selfish one. Instead, it makes you human, overwhelmed, and done for the day.

The “Ineffective Parent” Experience

I know that parenting your child with special needs often leaves you feeling ineffective and out of control. This is not how you expected your parenting experience to be perhaps because you perceived your parents to be very much in control of their children. In fact, at times, you feel may embarrassed because you can’t ‘control’ your child in public or during family or friend gatherings.

It’s okay. You may feel out of control right now, but keep in mind that your parenting experience is very much influenced by your perceptions of parenting and your experience of being parented. You may have lots of ‘shoulds’ in your head about how you ‘should’ be parenting and how your child ‘should’ be responding to you. Explore those childhood experiences and open yourself up to the feelings you had towards your parents. Perhaps it was a happy childhood experience, but maybe it wasn’t. Allowing yourself to be honest with you about these underlying, perhaps even repressed, experiences and emotions is tough because they can sometimes be raw and intense. It will take time to process and understand, but this will also help you to understand the source of that background tension and anxst that seems to bring you down and impact you daily.

Acceptance

Once you reach this phase, you will wonder why you didn’t get here earlier. You are likely to feel relieved because you are more at ease with your child and your parenting experience. You are also likely to want to reach out to other parents to help them to reach this phase and find the same sense of peace that you now have. This is also the point when you are ready to share your experience and your journey.

This will be a journey indeed. You may find yourself making progress and then falling back to an earlier phase. It’s okay. Embrace the reason, explore it, and move forward. In the meantime, I hope you find the peace that you are seeking, and allow yourself to feel the unbridled joy and love that your child brings to your life, family and community.