Parenting is not easy. And (shh), it is not always fun. It can be grueling and, at times, seemingly impossible. There are days I want to put up a sign that says, “Gone Fishing. Or to Trader Joe’s. Or to pee. In Iceland.”
The thing is, parenting is isolating at times – no matter how much you love your children and adore motherhood. Having a kid with special needs can really throw you into a corner all alone. It doesn’t matter what the specific need is; it can be terrifying and trying along the way.
Here are four things I wish I had learned 12 years ago about parenting a child with special needs.
1) It is not easy; maintain your sense of humor.
My oldest daughter and I have a special relationship. We get each other. We love each other so intensely it is often suffocating (for both of us). She is fun, bright, passionate, funny and wants to be with me always. She also has attention-deficit/hyperactivity disorder (ADHD). We have all had to learn to laugh (with her) because otherwise we would cry. If we find humor in everything else, it makes the painful parts a little less painful.
2) Find support.
For years I did not share my daughter’s issues with anyone – not even her teachers. Sure, they knew she had ADHD and understood the impact it could have on her life at school. But no one knew about the difficulties she had at home: the meltdowns, difficulty reading social cues or how she would not go to sleep at night. I was sure all of this was because I was doing something wrong. Then one day, after a really rough night, I broke down to a friend. Lucky for me, I chose the right friend; as it turned out, her child had similar issues. We vented, shared stories and became each other’s main means of support during the hard times. To this day, we laugh together, cry together and offer each other tips.
My other lifesaver has been our cognitive behavioral therapist. She has helped my daughter become aware of her behavior and work on regulating her emotions. She has assisted me and my husband in coming up with a behavior plan based on incentives. She has helped us understand the psychological and physiological characteristics of kids just like my daughter. It actually felt better to know our child is not entirely unique; it made us feel less alone.
Online support groups for parents are also helpful. There is a whole world of parents who are experiencing the same issues that you face. You can validate each other, mentor each other and explore your options together.
3) Tune out your critics. Trust yourself.
My harshest critics are often those closest to me. “She has tantrums because you are so strict with her.” “Why aren’t you enforcing more rules and limits?” “Why on earth are you not medicating her?” “Why did you medicate her? Poor kid!”
It was hard, but I had to learn to feel confident in my own parenting. As I relied more and more on “the experts” and my fellow parents to guide me through the rough patches, the more I was able to tune out my critics. I have learned to parent as I see fit. Oh, my critics still criticize, but I am more capable of ignoring them and carrying on. I have watched my daughter thrive and blossom as my husband and I learn to parent with confidence.
4) Advocate. Advocate. Advocate.
You are your child’s greatest advocate – and at times, maybe the only one. Even with the neuropsych evaluation in hand, you may have to gently (or not so gently) remind the teachers your child needs modifications and/or differentiation to meet goals and expectations.
When a teacher says, “Your daughter had a lot of trouble focusing on math today,” I ask, “What came before that block?” When they reply, “English and science and a double block of reading,” I know to ask, “Was there any gross motor movement? Any breaks? Was she given any time at all to get up out of her seat and even socialize?”
I’ve been on both sides of this coin. I’ve been the teacher with 28 kids in my class. I have seen how hard it can be to take every single child’s needs into account, but it is still so important for teachers to do this!
It is your right – perhaps even your job – to keep your finger on the pulse of your child’s life at school. If he/she is not successful, ask yourself: why not? A simple tweak, like walking around the school after half an hour of work, could be just the trick your child’s teachers may have overlooked. No one is a better expert on your child than you are. I should add that you will have many a teacher who has your child’s best interests at heart. We have had plenty of those! Be sure to let them know how much it means to you!
Every family has ups and downs. Every child has good days and bad days. Sometimes it feels like we families with children with special needs have more rough days than “normal” families do. But I assure you, this is not true. What I have learned since I started opening up is that no family is “normal.” And we are so lucky.