Chances are when you were pregnant you read books, articles, or blogs about your baby’s development. Maybe you even signed up for one of those websites; the one that has you enter your due date and each month they send you a "Hey, your baby is the size of a peach and has hair!"
When I was pregnant with my first baby I had been a pediatric occupational therapist for seven years. I was trained to measure development and determine how far outside of "normal" my client was in his/her developmental milestones.
I too signed up for those monthly emails when I was pregnant with my first child. After she was born, these emails became a form of cyber terrorism on my mental health. Besides the fact that I repeatedly attempted to unsubscribe, assured I would no longer receive these messages, only to be pelted with yet another one the next month. These emails were monthly reminders of the "normal" I was missing.
At first I tracked all of the missed milestones, but then it began to be too much and it only fueled my anxiety. I longed for a textbook to help ease my mind and light a path toward a pure and comprehensive understanding of my child, like a “Special Needs for Dummies” or “Special Needs 101.” But there was none. The uncertainty for the future was a pain that literally sent a piercing pain to my heart and a cramping twist in my stomach.
As a matter of fact, a “what to expect when you are raising a neuro-different child” does not exist and for good reason. Normative data can provide a useful reference point and direct our goals, but we must also step aside and allow our kids to guide us in the developmental process. It doesn't always happen in a linear trajectory and when we are hyper-focused we forget to take in the panoramic view of the process.
Here is my mini “Special Needs 101,” as written from my lived experiences:
1. Don't measure yourself or your child against anyone else. Soon after I had my daughter and I was in the depths of my feelings, I read a blog written by a mother who just had a daughter with Down Syndrome. She wrote gleefully about how she felt nothing but joy and blessing. She posted pictures of her and the baby just hours after birth. They were glowing. While I honor her experience, I could not help but feel terrible for not having the same emotions. Frankly, I felt like a grade-A asshole. Now, I have found peace in recognizing the uniqueness and sameness in our story. Blaze your own path and write your own story.
2. Get yourself right first. Just before take-off, a plane’s stewardess or steward will instruct you on the safety precautions. One such instruction is to place the oxygen mask on yourself before anyone else. THIS is a great metaphor for life, especially when you are a caregiver. Self-care is essential, not optional, when you are caring for another.
3. Get yourself a team. Our kids have a team: therapists, doctors, teachers, and specialists all focused on the potential of our children. But who is on your team? Often we feel alone and isolated with no one who can understand the complexity of our emotions and challenges. Maybe we no longer relate to our friends who do not have the same challenges with their children. We need a team just as strong and laser focused as our kiddo’s team. Reach out to a good friend who will check in with you and keep you emotionally in check and accountable for your own self-care. Seek out a therapist who can support you on this crazy parenting journey.
4. Beware of the internet. After I had my daughter, I spent hours investigating her symptoms on the world wide web. I would make myself crazy with the information I found and sink myself deeper and deeper into my despair chasing information further and further into the web’s rabbit holes. While the WWW is packed full of useful and good information it doesn’t mean that we should stake our perceptions on everything we find in our web searches. In our understandable quest for answers we should be reminded that we are searching without filters. The web doesn’t account for our child’s unique developmental path. Look for national associations and vetted websites and ask your team for websites they recommend.
5. Parent from a place of present not future. I will be the first to admit that most of the eleven years of my daughter’s life I parented from a place of fear. I did not give enough respect to the natural development, maturation, and plasticity (flexibility to change) of the brain. Instead, my anxiety caused me to parent her under tremendous stress, like a terrible game of “minute to win it.” I felt as though she must meet each milestone based on my time frame and if she didn’t I needed to push harder. I became her therapist, not her mother, and a bond was lost. While we continue on with therapies and interventions, I consider them complementary to the connection I have with my daughter and to the inspiring way she is choosing to develop.