by Amy Groshell
Prior to becoming the parent of a special needs child, the word transition was neutral to me. Now, I don’t know any special needs parent (myself included) for whom the word transition doesn’t invoke a feeling of fear or panic. Transition, by its very definition, implies change. It helps me to see this change as an opportunity for growth. In nature, the growth of a seed to a plant requires it to be buried by the pressure of the soil or, in the case of hydroponics, red clay stone. Pressure is required for change. In times of transitions, another special needs mom always reminds me that “Change is your friend.” I hope this blog is an encouragement to those encountering transitions with their child to see them as an opportunity for growth.
My beautiful daughter Gentry, with profound autism, who also types to communicate, has taken me on many journeys of transition. To be honest, I think she has dragged me through them kicking and screaming. I remember being falsely diagnosed with Postpartum Depression. My journey for health advocacy began and I later found out that my true diagnosis was Graves Disease or hyperthyroidism. I had to transition from nursing my beautiful infant to giving her a bottle. Although still thrilled with her development, I was suddenly confronted with change again when she began a series of bizarre, repetitive behaviors, loss of language, development of severe sleep issues and hyperactive behavior. These were all transitions that were out of my control. No one I know would have chosen to experience any of these. Even though I can attest that personal growth came out of these uninvited transitions, the focus of this blog are the transitions we choose or deny.
In parenting a neurotypical child, transitions are more of a given but with a special needs child they can be delayed or even optional. I often say the relationship between a special needs child and their mother is symbiotic. It’s as if, mystically, the umbilical cord between them is never severed. After all, the child’s very existence often depends on their parent. This is especially true for a child who is medically fragile and/or doesn’t speak. Even with all necessity and good intentions, before we even know it, we have enabled a behavior (sleeping with your child, choosing his clothes and food, etc.) that was appropriate at 5 years old to continue until age 25. As your child becomes a pre-teen, teen, and young adult be mindful to assess what is as “normal” as possible for a child of their age. I am a firm believer that all children are due “rites of passage.” If you think about their normal child development or the development of their siblings, there are many such rites. There is soccer practice, dance, karate, sleepovers, boyfriend/ girlfriend relationships, getting their license, prom, graduation, going off to college, getting your first apartment, etc. Even though these rites of passage may be different for a child with special needs it is important for their personal growth that they go through such transitions. “Ido,” with the blog “Ido in Autismland” praised his parents for all their love and support but encouraged them to let him fail, because he realized it was a normal part of the human experience and it was a way he could learn and grow toward greater independence. Even being allowed to fail is a rite of passage and one we should not shelter our special needs child from.
Transition opportunities twenty years ago for inclusion were slim. Being a part of a social group or class was nearly impossible. Now there are both special needs groups and inclusionary opportunities. Early on in my journey I bought into the belief that my child was different and therefore needed specialized support apart from others her age. It wasn’t until my mentor, Marilyn Chadwick, said to me that the only prerequisite for inclusion was “breathing.” She isn’t a second class citizen. Despite her challenging behaviors, the world needs her diversity and this belief makes me a big fan of inclusion when possible, especially if it is the desire of the child. In general, I think it’s important to assume that every child wants what other children their age are exposed to. There is a term for this: “presumed competence.” It essentially means to treat persons with disabilities with the assumption that they have the same hopes, dreams and desires as you and I do. It’s no surprise to me that non-verbal individuals who learn to communicate quickly express their desire for relationships and for their intelligence to be known. A recent article, "'It’s a Spectrum' Doesn’t Mean What You Think", states commonly misconstrued believes about “low” and “high” functioning persons with autism. The author, an individual with Aspergers, states that often persons called low functioning desire greater independence while those deemed high functioning need a greater awareness of those around them for support. It is important to not make assumptions about the life they desire to live but to give the child with special needs a voice when it comes to life transitions.
Having founded a 24-7 residential group home for non-verbal persons with autism, I have had the opportunity to encounter many families inquiring about placement. Living outside the familial home is probably one of the scariest transitions of all for parents of special needs children. I would highly encourage parents to not just think of such an arrangement out of a fear arising from the question, “What would happen when I’m gone,” but out of the thought that your child desires independence just like any other individual their age. Holding on to the mindset that, as a parent, no one can care for your child like you do (while true) can block this valuable opportunity for growth in your child’s life. It’s normal in child development for children to transition from their parents’ care to the supervision and care of others. No special needs child ever loses their parents in the process! Often, in the process, the family realizes how discombobulated their lives were. Watching families make the decision to entrust the daily care of their children to others is one of the bravest acts I have ever witnessed. The result is often growth beyond comprehension and a new, more mature, relationship with their families.
While a 24/7 care may not be available or an appropriate option for your child, maybe there are other ways to forge paths toward greater independence. My oldest daughter has significant learning challenges and high anxiety. She has found greater independence living in a garage apartment on our property. I have a friend whose daughter lived in a condo with a former therapist. Recently, Jacksonville built a special needs community for those not needing 24/7 care but do require access to daytime supervision, activities, meal preparation, and transportation. If you find yourself in transition paralysis, seek counseling or ask a trusted friend or mentor for their feedback. You, your child, and your team can work together to see what is right for your unique situation.
Whatever transition you are facing, see it as an opportunity for growth for you and your child. Make them a part of the decision. When you face transitions boldly, head on, and stare them right in the face be prepared to watch your child soar. Above all, don’t forget, “Change is your friend.”