Welcome to Family Matters: Fully Human Edition. This is Melanie DiStefano. Today I’d like to share a reflection, a back-to-school pep-talk for caregiving parents entitled, “It’s All OK.”

Growing up, fall was my favorite time of year, for many reasons. I loved the cool, crisp climate of sweater weather and how everything transformed so beautifully: the trees changing colors. Everything felt new and exciting. With the onset of a new school year would come new subject material to learn, renewal of classmate daily relationships, new clothes, shopping trips for school supplies. And extra-curricular activities became organized again with sports, cheerleading, etc.

All these things brought with them, for me joyful anticipation, because, for the most part, I enjoyed and typically did well in these areas. I was blessed to have parents who, though were not wealthy, found ways to provide more than what their children needed. Academic learning came naturally to me, and so even though I might get anxious about difficult assignments, I loved the knowledge I gained. In fact, as early as I can remember, I preferred playing school with my friends and cousins to playing house. I’ve always been a learner at heart. I was also decently agile and animated as a child. I loved to express myself in dance and gymnastics, so extra-curricular activities like dance line and cheerleading were natural fits for such expressions.

Who wouldn’t, then, get excited about the onset of a structure which highlighted the use of one’s personal strengths? I can see this looking back. It wasn’t something I was aware of necessarily at the time. At the time, I simply loved new school years.

Things have changed. My son’s formative educational experience has been dramatically different from my own. Typical school settings have never been a good fit to address all of Michael’s medical, mental, and social challenges. All the things that came somewhat easy to me academically and physically, for Michael have come with great effort, with several modifications—and many times these skills never came at all. And that’s OK.

At the beginning of each new school year for Michael, I still feel excited all over again, considering how a new start, a new IEP, new teacher or aide might provide new avenues of learning, new milestones to be met. That certainly has happened at times, and it certainly has not at others. And that’s OK.

The initial excitement that I do feel at the beginning of his school year quickly morphs into worry and fatigue as Michael’s health inevitably plummets. Cold and flu season comes around, allergy season, and so he cannot attend classes, therapy sessions, consistently. Even when he is healthy enough to attend, it’s difficult for him to attend to tasks. His body just feels miserable. Included in the whole mix is a critical balance of managing his basic needs. He has a modified diet. He intakes drink and medications through a G-tube. The point is: Michael’s school schedules and experiences have been entirely abnormal. And that’s OK.

There were times, however, when it wasn’t OK. There were times I never thought it would be OK. There were periods when I wept and mourned deeply at the thought that my child might never experience any carefree happiness in his school days, at least the kind that I had known. During his earliest and most medically fragile years, I learned the hard way that pushing him to attend school placements and therapies in spite of his bodily needs, because “early intervention is so important to meeting milestones, and he’s already so far behind, and we have to get him into therapy now so he doesn’t fall further behind—this is very important, Mrs. DiStefano!” as many professionals warned me, with a heaping helping of anxiety, I learned that pushing him through these things and therapies guaranteed nothing.

We heeded the anxious advice as best we could. We jumped through all the right hoops, so to speak, received therapies from Michael’s infancy onward—in home, out-patient, in sickness and in health. His sicknesses came and went, and came again, and so did skills. Mostly, his skill-set has grown super slowly, developing over many years of repetition and practice. This is Michael’s irregular learning curve. And that’s OK.

Here are a few more things I’ve learned through the years and I hope will help some parent out there. I have learned that no therapy, no matter how effective for some, provides every answer for every person. Some approaches work wonderfully for some people with disabilities, even people who have similar diagnoses as my son, while being entirely inappropriate for his needs, his temperament, and his skill-set. And that’s OK.

I have learned that sometimes things come together, and sometimes they don’t. There have been blissful school years where the right fit for teachers and aides and medical care all came together in one setting. There have been celebrated breakthroughs when he’s introduced to new modalities, new professionals, and he responded with marked improvement. We have tried, we have erred, and we have learned what works for Michael and his unique set of circumstances, gifts, personality, and our own unique set of circumstances, gifts, and personalities. We have grown knowing our son and ourselves better through it all: the good, the bad, the ugly, and the beautiful. And that’s OK.

I have learned to adapt according to his needs. During COVID, we adapted by homeschooling Michael, to do our very best to prevent his hyperactive immune system from having to deal with a novel virus. It was hard, but we found help. There were professionals who were willing to train me, work with us and our very irregular schedule. Those who recognized his strengths accommodated for his challenges in humane and relational ways. These professionals helped us balance the whens, hows, wheres, and whys of cultivating skills. They helped me recognize a need to step back and reevaluate when Michael showed signs of frustration or fatigue or even regression.

Another lesson, and a very important one: I have learned it’s not all my fault. Over the years, I have felt guilty for everything Michael never learned to do, for that is my way. I certainly know that I fell short in many areas. There were some amazing friends of mine, moms of children with disabilities, who are creating social stories when their child was seven years old to teach them how to bathe themselves, while I was simply trying to stay awake enough to attend to Michael’s specialized diet and to get the help I needed for the depression and fatigue I was experiencing as I cared for my son. And that’s OK.

I have learned that God supplies what we need for our salvation, maybe not what we want to stroke our egos. I know my strengths and I know my weaknesses. I am sure I could have done better in areas, and when I realize how I’ve made mistakes, with God’s help I tried to repent. I also know that, like all parents, though I do not have every gift, I have been give a share of gifts necessary to be cultivated in service to my child, including God-given resources, talents, ideas, and of course his grace, which is sufficient for all our needs and more.

Now that our son is 18 years old and his official school years will end shortly, his educational set-up remains atypical. While friends and family members are going off to college who are the same age, I am still managing Michael’s therapy and school sessions. I only recently had to make yet another difficult decision regarding his therapy needs. The old insecure mother inside of me who feels much more confident sermonizing or imparting academic knowledge arose and threatened to make me second-guess my maternal instincts. This time, I told the enemy to get lost. I am tired of the guilt I put on myself and that the enemy tries to put on me. Life is too short. Maybe I’ll never be 100% sure without a doubt that this choice my husband and I made for my son was the absolute right choice. Time will tell. And that’s OK.

Fellow parent, you know your child who has atypical needs better than anyone else in the world. My caring advice to you is to, of course, first of all pray to God for guidance; seek counsel from friends, from your confessor, and more importantly your spouse who, even if he or she is not as involved in the day-to-days of your child’s care and education, might have perspectives that could lead to new avenues of growth for your child; also, seek counsel from trusted educators and professionals, but—and this is very important—do not discount your own innate compass compelling you toward what your child needs to grow in his or her full potential in this life.

You will make mistakes—it’s inevitable—but you will learn from them. You will learn your child better. You will watch for their signals and move accordingly. Does your child show resistance and dread when going to a school setting or a therapy and absolutely no signs of growth? Say goodbye to the therapy or school, and don’t look back, trusting that some approaches, though valuable, may not be the best fit for your child. Listen to your gut when you think something is off with a teacher or caregiver. Bring up concerns with supervisors. Let caregivers and teachers know you are involved and watching closely. If you see signs of neglect or even worse, do not hesitate to cut ties. There are other opportunities. God will open other doors for your child’s care and education.

God has formed you for the parenting choices you need to make for your child. He doesn’t expect you to be all-knowing and to fulfill every role your child needs to grow in this life. He does expect you to trust him; rather, he invites you to trust him, to look to him, and to love him and the child he gifted you with. St. John the Theologian writes in his first letter, “God is love.” That is the bottom line, and it is the impetus for all true growth. Love is the one thing needful, and love is a Person, who calls us to sit at his feet, open to the warm grace and light he wishes to fill us with, so that in turn we become that warm grace and light for our children.

If we are willing to receive Christ’s love, our trust in him will grow, and we will come to love and trust that our child is exactly the child whom the Lord delights in in every stage of his or her development, regardless of what skills he or she has or doesn’t have. Let me repeat that: Your child is exactly the child God is delighting in, at every stage of their development, regardless of what they can do or not do. When we love each other in this true way, unconditionally, blossoming out of that love, our children will indeed know excitement of new beginnings and tapped potential, both in their school settings and in the wider school of life.

In that love, in our Lord Jesus Christ, I hope this new school and Church year will be blessed and fruitful for you and your children. I hope it will bring with it progress toward acquiring new skills and understandings, and most of all wisdom from the mistakes we all make, learn from, and repent of. And that’s more than OK.