When I had my first son, I didn’t expect to be raising him by myself, and I certainly didn’t expect him to be any more different from other people than I am. Despite an involved ex and a team of family and friends, life with an extra needs child is a journey I wasn’t prepared to take. Here’s how we cope and move forward with optimism.
My son was three when his preschool teacher first sat me down and recommended a visit to the pediatrician. Two weeks later I pulled him out of his Montessori school thinking it was simply a bad fit for my strong-willed, energetic child. Six months passed, and I found myself in the same conversation with a new teacher at a play-based school. We started a series of evaluations, which led to no diagnoses, lots of speech and occupational therapy, and a journey that continues today.
Labels we’ve tried on over the years include developmentally delayed, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), ADHD, and not quite clinically significant anxiety and depression. ADHD is the latest label, but I still don’t think we have the full picture.
Three years into the journey of parenting my extra needs kid, I don’t know that we will ever have the full picture.
I’ve read great posts from parent-child combos who have finally figured it out (like this ADHD post from JaxMomsBlog). I’ve had moments along the way when I thought we had it all figured out, too. But then he grows, and shifts, and changes just like all kids do, and suddenly the picture is different.
Lately, parenting my extra needs child has been, well…extra. I’m in the middle of advocating for an informed, beneficial class placement for him at his Waldorf-inspired public charter school. On recommendation from his physician, we’re a month into a trial wheat-free, dairy-free, low sugar diet and a host of expensive nutritional supplements that seem to be making his throat clearing tic worse. I’ve been so immersed in the details that I’ve lost sight of his significant gains in handwriting, his advanced visual perception skills that make him a lego master, and his never-failing empathetic and curious spirit.
This week the boys are spending extra time with their dad, which is the perfect opportunity for me to take a break and remind myself of the lessons that have buoyed me over the years. If you’re a single parent and not quite sure what’s up with your kid, consider this.
1. Know when to take a step back.
Parenting as a single mom is a challenge in and of itself. Throw in an extra needs kid and oh. my. god. Despite the numerous well-meaning teachers and health care professionals, no one is there to make sense of all the recommendations and coordinate them into a tangible plan of action. That’s your job. And quite frankly, you’re going to have to take a vacation from it every now and then. If you find yourself confused, overwhelmed, and unable to decide what to do next, it’s probably time to take a break, care for yourself, and pick up the work again next week or even next month.
2. Get organized.
When you’re corralling your toddler and kindergartener from the car to the front door and trying to get dinner on the table before they or you meltdown, you’re not going to waste much brain space on where to place the copay receipt from speech therapy. But having a process and organization system in place ahead of time streamlines the awkward task of approaching your ex for reimbursement. Organization is not my forte, but I try to keep up by filing my receipts into a “For Reimbursement” folder and a “Paid” folder. It’s also important to have a file folder or binder to keep track of evaluations and information related to health care and education. This will save you a lot of time when a new health care provider wants to know who did what test two years ago.
3. Compare notes with other parents.
Your child’s teachers, physician, and therapists only have so much time to spend with you. Other parents of extra and special needs kids are where the gold is when it comes to exploring resources and processing the emotions that come with the journey. Talking with other parents helps you find out what worked and didn’t work for kids who have challenges similar to your own, discover therapies and practical tips that weren’t already on your radar, exchange resources likes books and websites, and get the inside scoop on the best professionals and services in town. I’ve found that when I’m open about my son’s challenges, I easily discover and connect with other parents of extra and special needs kids at school and in other social settings.
4. Avoid jumping to conclusions.
Leading up to my son’s first extensive evaluation to rule out autism, I was fully braced to accept the worst case scenario. “He’ll never move out of the house, and I’m doomed to live with the burden of active single motherhood for the rest of my life,” I reasoned. The evaluation came back negative and left me with lots of advice for moving forward and helping him develop successfully. Even if he had been diagnosed with autism, a plethora of resources would have accompanied it. In most cases, your worst-case scenario will not come to fruition. Don’t waste time and energy dealing with it unless it actually happens.
5. Be an advocate.
Even though the people who work with your extra needs child most likely have his best interests at heart, you will have to advocate for your child, especially at school. The education system is designed for the masses. When your kid doesn’t fit the mold, he’s going to need accommodations and special considerations. There are systems in place to help, but you have to add your human involvement to be sure your child has what he needs to enjoy and be successful at learning. (Stay tuned for more detailed guidance on how to do this.)
6. Find your child’s strengths.
Strengths may not be obvious at first. The only thing my son was advanced at as a toddler was potty training. As your child grows, keep a watchful eye out for the strengths that are bound to reveal themselves. By the age of five, my son displayed an innate ability to fix and build things. I first realized it when I left the pieces of an apple spiralizer on the kitchen counter. I had given up trying to put it together myself. Five minutes later, I returned to the kitchen, and the machine was fully assembled. The responsible party? My son. Over the past year he has also shown an intrinsic interest in creative art projects, scientific facts, and outdoor freeplay. Notice those strengths and encourage your child to develop them for his own personal growth and confidence.
7. Set your child up for success.
Notice how your child functions best, and roll with it. Does he thrive on structure? Develop a routine for your activities at home so he knows what to expect. Is he behind on gross motor skills and coordination? Competitive team sports with kids his own age are probably not going to be helpful or enjoyable. Encourage individual sports like swimming, bike riding, or gymnastics instead so that he is his own competition as he continues to gain control of his body. And for god’s sake, if your child has ADHD, you should probably skip the Montessori school that centers on independent, self-directed work.
8. Don’t take your child’s challenges personally.
For every promising therapy that ultimately fails to make a difference, I come up with another reason as to why my son’s challenges must ultimately be because of me. I got divorced. I’m too sad too often. I don’t spend enough time doing speech therapy homework with him. We watch too much television. If it weren’t for my youngest son, I would take these thoughts more seriously than I already do. The blessing of having two boys is that they were raised the same way by the same parents, and they’re both so different from each other. My youngest son was blessed with a temperament and rate of development that jives well with the education system. My oldest son was not. For better or worse, my son’s challenges are his own. Even though I’m always striving to be a better mother to him, ultimately I’m doing my best and I’m not the cause of his struggles, which, for the record, started well before divorce.
9. Don’t approach medication as a moral decision.
If you have an extra needs kid, medication will probably be proposed at some point. This is a hot button issue, especially given that our society tends to overprescribe. From my own struggles with depression and my leanings toward natural health, I’ve learned the hard way that medication does have a place and is ultimately an extremely personal decision. It can’t be approached with black and white, good and bad thinking. Making this decision for yourself is hard enough. Making it for your kid is mind boggling. Making the decision with your ex is potentially explosive. I’m thankful to be on the same page with my ex so far and hope to have more insight to offer on this subject soon.
10. You are the expert on your child.
Rumor has it that when my grandma was learning to drive, she would freak out when a big semi truck passed and would throw her hands off the steering wheel and scream. That’s about what I feel like doing when things get rough with my son and I don’t know what to do next. As a single mom, there’s nobody in the passenger seat, and you’re driving that car whether you like it or not. You can’t just throw up your hands and expect somebody to take over and “fix” your child. You have to stay present and grab that wheel. Listen to the physician. Get a second opinion. Try cognitive behavioral counseling. But don’t forget that you know the most about your child. You are the one that has to weigh the professional input against what you’ve already observed. If you have a gut feeling, pay attention. If you don’t agree with a recommendation, steer in another direction.
During my most recent meltdown, my mother gave me some sage advice to underscore this whole extra needs journey. “Remember that in this moment you are okay and Cameron is okay,” she said.
Do you have a special needs or extra needs child? What advice would you add to this list?