I knew that some things were harder for my kids than they should be. At first, there were just fleeting thoughts in the back of my mind…“is this normal?”…”is he just a strong willed child?”…”is this just a phase he’ll grow out of?”
But, as the boys grew older and more was expected of them, I couldn’t ignore that my kids needed some extra support. I didn’t want them to be labeled “special needs” but by 1st grade I was highly aware that my kids each had needs that were…special. We decided to pursue testing through our public school and also get full neuropsychological evaluations from a private clinic. I was nervous at first – I wanted to know what we were dealing with but everything in me was resisting “labeling” my kids.
The results from clinical testing were pretty staggering.
At first we agreed to keep our child’s results private from friends and family, and share the information with teachers and caregivers only on a need to know basis. I guess I thought people would judge my kids if they knew they had specific learning disabilities, special needs, or behavioral issues. I was afraid the boys would be limited because of their differences or judged for going to therapy or teased when being pulled out of class for services.
I must have been in denial because at some point I realized that my kids were already being judged harshly because of their inconsistent or negative behavior. Peers became easily upset and offended. Teachers marked them as troublemakers or defiant. My mom friends said things like “you need to spank them” or suggested I feed a gluten-free diet. Even my kids knew something was wrong and were exhausted from constantly trying to compensate.
What I’ve found since embracing our labels is just the opposite.
People judge my beautiful, unique, loving children less harshly because they now have a way to frame the behaviors that they see.
Instead of assuming the kids need more discipline, or a healthier diet, or less electronics, they can start to peel back the layers of WHY my child is having a Stage 5 melt-down, or using inappropriate language, or wearing his clothes backwards. From this perspective, they can see how much he has accomplished in spite of his struggles and celebrate his differences.
Being able to put a name to my children’s struggles was one of the best gifts I have ever given them. They constantly require extra grace, and being able to communicate that need to caregivers and educators in a tangible way allows my kids to receive that extraordinary patience. The labels that I cringed away from provide a frame of reference for people who otherwise wouldn’t understand my child’s behaviors.
The labels we use now are not intended to limit or dismiss my children’s potential. Instead, we use labels respectfully with the sole intention of elevating our children’s journey through a world that can be hard and judgmental. We use labels so we can connect with the right therapists and doctors and so insurance will cover treatments and medications.
We use labels to avoid misnomers and we always include our kids in the conversation (age appropriately) because it is THEIR story after all.
As a mother, knowing specifically what my kids individual struggles are has given me freedom from the haunting mom-guilt.
It was a relief to learn that I hadn’t messed my kid up, or failed him somehow, but rather that his struggles were real emotional/behavioral and health issues that needed treatment. In the context of a clinical diagnosis, I can parent with compassion instead of worrying that my child hates me, or that I’m doing it all wrong. Being a special needs mom is a high calling – I constantly have to bridge the gap between mom and therapist. Now that I know what I’m dealing with, I have surrounded myself with a village that can support me as I raise three very unique individuals.
Owning our labels has been a huge relief to my children as well.
I hated explaining to my son that he has ADHD – it broke my heart that this will be a life-long struggle for him but he took it in a stride. It frustrates him sometimes – he will break down and say things like “I hate ADHD!” or “ADHD is so stupid.” But, as a mom, I’m infinitely grateful that he knows where to direct his frustration, instead of hating himself or thinking that he is stupid. In those moments, I take his side, I tell him “me too, this is hard and I hate it for you.” We talk about how other people have similar struggles, that he’s not alone, and that he has a team that wants the world for him and will never give up on him.
Are you considering getting an evaluation for your child?
If you are already a special-needs mom, do you find labels scary or helpful?
Photography: www.jessicarockowitz.com
I’m still struggling with this. My son has ADHD and very profound dyslexia and struggles because there is a constant battle between the need to learn to make adjustments in his learning style and his attention and focus issues, even when he is taking medicine. He has had teachers that labeled him as a ‘difficult’ student or as a student with behavior issues. It took us a very long time to accept the ADHD and dyslexia labels. He has ADHD and dyslexia though and I constantly have to remind myself of that and grant both of us some grace when the frustration is high or I am about to lose my temper because he can’t focus on one thing for more than 15 seconds or hold eye contact when he’s speaking to someone. I also struggle with the concept of special needs. There’s a support group at our church for parents of special needs children that I keep thinking about attending but is he special needs? Medically, he’s perfectly healthy. Developmentally, he’s on time. I almost feel like (as absurd as it sounds), he isn’t special needs enough for me to fit in there. ADHD and learning disability diagnosis and labels are treated differently than many others. It’s such a grey area that some think is made up. Sorry, just rambling some thoughts that have really been bothering me recently.
Loved your article! As a teacher, I struggled with this BIG TIME! How could all three of my boys have 504’s when I was a teacher and dedicated mother. I resisted as long as I could until teachers and melt-downs forced me to rethink my unsuccessful denial strategy. As soon as I learned about their labels, I learned how to help them. Teachers learned how to help and had educational plans in place that we all agreed would best help them to progress in school. Life suddenly changed for the better for all of us. My oldest son with ADHD is soon off to college with a solid B average and pretty awesome SAT scores. He is a loving son, amazing and loyal friend, and an all-around good human. We’ve come a long way and honestly, I couldn’t be more proud. Students with special needs oftentimes have to work much harder than the average child. This HUGE effort in school and in life sometimes creates work ethic and heart that the perhaps the most intelligent of humans are missing.