Somedays when I feel like I’ve really been put to the test and passed on to a new level of special needs parenting, I think there really should be some sort of classification system when it comes to expertise in parenting a special needs child.
A virtual pat on the back.
A little badge that you can wear on your sleeve.
A silent promotion that nods to a new parenting milestone—one that you perhaps at one time did not even realize existed.
In an effort to nail down the journey that special needs parents follow, I’ve classified the parenting stages into levels.
Maybe you recognize yourself somewhere in here.
You may have just received your child’s diagnosis, and are still coming to terms with what this new information means for your family and your child’s future.
You’re still learning how to use the lingo to describe your child’s unique needs.
You stumble over words, sometimes mispronouncing terms as you go.
The recent diagnosis has you questioning your intuition as a parent.
You feel like the parent of a newborn all over again, even though you have already been successfully caring for your child pre-diagnosis.
You question every step you take and every decision you make.
However relieved you may be at having a label and an answer to pair with the uncertainty that you’ve been living with, you still feel overwhelmed. Insurance, hospitals, medical procedures, human anatomy, and perhaps even human genetics feel like new foreign languages that you need to have learned as of yesterday.
You have learned the key characteristics of your child’s diagnosis.
You’ve reached out through a variety of social networking tools to other parents of children with either your child’s diagnosis, similar symptoms, or those with similar medical devices and interventions.
You’re learning new things every day and have found your feet again after perhaps losing footing initially in the early days after the diagnosis.
Your confidence is slowly being restored when it comes to caring for your child intuitively.
Perhaps you’ve already given some tips to a beginner, and you’ve started to feel like an expert in your own right.
Naturally, you are already an expert on your child.
At doctor appointments you are already taking the lead and educating medical professionals on certain points about your child’s condition.
By now you have probably walked through fire at least once for your child, but instead of getting burned, you’ve found a whole new level of energy and purpose.
Your instincts are so masterfully in tune to your child’s needs.
You and your child are an unbeatable team.
Appointments with medical specialist are not nearly as intimidating as they were in the earlier stages.
Sometimes you even find yourself cramming before doctor appointments by reading medical journal articles to ensure that you are up on the latest research regarding your child’s condition and treatment.
You still are using social media networking to glean information from more experienced parents, but now you are also an active contributor when it comes to giving advice and sharing knowledge.
Having reached this status, you may have started to feel invincible—my child’s condition, I’ve got it under control.
This is a sticky stage to be in, you feel so comfortable with the situation and have come so far, but unfortunately things can change quickly.
The first time your child’s diagnosis throws you a curve ball at this level, it will more than likely take you by surprise.
But you will pick yourself up quickly and push forward.
You know that there is never any time to lose.
So you skillfully switch to power-parent mode and battle on—whether that fight is against an acute turn in your child’s medical condition, or you are advocating for a treatment or the legalization of a medication that could change your child’s quality of life.
Once you’ve reached this level, you’ve seen it all.
That doesn’t mean that you aren’t still learning.
As anyone with a higher level of knowledge with tell you, once you reach expert status in any discipline, is not the time to sit back and relax.
This is the point when you aim to maintain.
You have to be very aware that there will be new developments that you’ll need to keep on top of.
The path you are on may still change suddenly.
But with the cumulative expertise that you’ve gathered over the years, even the toughest change of events will be taken with stride.
By this stage, you’ve probably had enough of the support groups.
The questions from the newcomers seem to be the same year after year.
You may not subscribe to the groups on a regular basis anymore, but don’t forget to stop in once in a while.
Those just starting on the journey value the presence of the veterans, who has truly been there and survived.
Perhaps your path has had some detours between stages, or your trip may look very different from the route I’ve mapped out.
In the end, we are trying to be the best parent we can be in a parenting situation that comes with a very vague manual.
So pat yourself on the back and keep on pushing forward.
Is changing your child difficult when you are out and about?