I am often asked when is it ok to stop all intensive therapies with your child with life long special needs. When my daughter with mild-moderate special needs turned 10, my husband and I decided it was time to stop all therapies. Here is why….
Our decision was not an easy one to make. In fact, it was perhaps THE hardest one with regards to her development. Truthfully, leading up to this decision, we lived with overwhelming feelings of doubt and guilt, but something deep inside kept encouraging us to trust our intuition.
And so began a new mourning process on this life long journey with our daughter, towards acceptance of things we cannot fully change or control. This is a truth so often faced by families with a unique child confronted with life long limitations. BUT, we are happy to say that it was the best decision for our little girl!
Although every child and situation is different, it is my opinion as a professional and mother, that there comes a time in these types of chronic situations when you need to reassess the wellness priorities for your child with life long issues, and focus your energies on maximizing quality of life through soulful experiences. We hope our story offers a helpful perspective in making such a personal decision.
From the time our daughter was 19 months old, we had worked very hard at assuring that she had the best comprehensive program in place, which would maximize her developmental growth, and learning potential. Like many other parents in our position, we did extensive research, consulted with world experts in all fields, did all possible testing, participated in specialized programs, did traditional interventions, tried promising alternative methods, created resources in our city, etc…Our world quickly became bombarded with numerous daily appointments, which led me to take an extended maternity leave to act as her case manager, and fulfill our grueling scheduling demands. Having been a practicing Occupational Therapist in child development for years, no one understood better than me the sacrifice required by parents to give a child like ours the best possible start in life. We did it intensely, full time, for 10 years. We made it work through personal and financial sacrifices, and would do it all over again if given the choice.
It all changed when we became so shockingly aware that the extent of the efforts put in by all the professionals involved, including our daughter’s efforts in meeting therapeutic goals, became clearly disproportionate to her slowing rate of progress(if there was any progress at all). It is at this key moment that we knew it was time to change our game plan.
As this began to happen, we simultaneously became incredibly aware of the fact that our daughter was struggling to find more meaningful and satisfying ways to spend her time. Furthermore, she had entered a critical period in her social/emotional development where one needs to forge a personal identity based on a healthy self-concept, achieved through experiences offering independent success. Rehabilitative, remedial, and compensatory therapies were no longer appropriate in helping our daughter achieve this essential milestone. The time had come to graciously change directions.
Throughout this entire process, we often questioned if we were giving up on our daughter, regardless of the fact that we had her professional team’s support. We quickly came to the realization that we were actually encouraging her to give herself permission to be proud of how far she had come, to accept herself as whole (just as she is), as well as offering her the opportunity to join the rest of us in a full, well-balanced life. The switch in our mindset and direction was truly transformational for our daughter!
By focusing more on filling her precious time with opportunities to feed her soul, our daughter found herself growing in all sorts of new directions in her life. Directions we never dreamed of or even thought possible! Directions we could not have reached through the previous approach. We observed her feeling genuinely proud of her new accomplishments, grateful for her personal strengths, and appreciative for the good things in her life.
The biggest gift to us was that we could finally enjoy just being her parents, as opposed to needing to also act as case managers, therapy assistants, and teachers. What a joy to see her finally bloom into the perfect version of herself, happy in her own skin, living personally satisfying experiences, and enjoying meaningful relationships!
Health is not limited to the body and mind. In fact, it is difficult to reach a true state of health without a happy soul. Our message to parents who might be thinking about changing their direction with their own unique child with chronic special needs (plateauing in most traditional areas), is to never keep this truth out of sight. In the end, all parents truly want for their children is their happiness…