This post is brought to you by the fact that I don't have a Facebook account. I read an article and it resonated with me. I desperately wanted to read the comments but a Facebook login was required to do so. Facebook just isn't my scene so in order to explore this topic further, I am throwing it out to all of my old familiar friends in the blogosphere.
The article I'm referencing is called "I Am Not My Child's Therapist" and it was published on The Mighty (click here). The author, Heather Kirn Lanier, has a daughter with special needs. She references how therapists who visited her home during the first year of her daughter's life often left her "handwritten lists of therapeutic tasks" that she should do with her daughter each week, and sometimes, this reduced her to tears. She recounts how the pressure to set goals and push her daughter towards these goals interfered with her primary role as a mother. She writes, "The goal of making her different stole energy from the duty embedding in my very DNA: love her. Love her as she is. Just love her."
Perhaps this article struck a chord with me because just one week ago, our whole family packed up and traveled to Gillette Children's Hospital in St. Paul, Minnesota, to have Josie examined by their renowned orthopedic team. I wanted to find out if Josie's gross motor delays (at age six, Josie doesn't run, jump, or climb) could be attributed to a physical disability beyond Down syndrome. I wanted to see if there is something we possibly overlooked. Is there an physiological abnormality that prevents her from being able to do the things that other children her age with the same diagnosis easily do? Is she in pain?
We waited months for the appointment. We traveled a significant distance with 3 small children. We stayed in a hotel. Travis took the day off of work. We reviewed the gait lab pamphlet with Josie and prepared her for what she was about to face. After an x-ray and a thorough examination by a pediatric orthopedic surgeon, we were told that there are no physical abnormalities and that Josie's gross motor delays are nothing beyond Josie taking her time to reach her milestones at her own pace. He suggested that we keep Josie enrolled in physical therapy. He suggested continuing to offer her diverse opportunities to explore movement in the hopes that something motivates her to be less sedentary.
On the way home, I apologized to Travis for making him take the day off of work and for wasting his time. He refuted that it wasn't a waste of time because we got reassurance and peace of mind. But I couldn't help but wonder if this was a sign that I've become too proactive/pushy/aggressive. Should I step back and just accept Josie as she is? Let Josie be Josie? Why am I always trying to advance her skill acquisition in every possible area? Am I a special needs "stage mom"? Do I just need to back the hell off?
Enter Ms. Lanier's article which stirred my neurotic pot that was already approaching a rolling boil. Where, exactly, is the line between "You can do it!" and "You do you."? I sought insight from several trusted friends; mothers and siblings of individuals with special needs. Each person offered unique perspective on the situation. And I hope they'll forgive me if I anonymously quote them:
1. I draw the line when my gut tells me it's more about me than him [son with special needs]. If I feel the least bit like I'm trying to fix rather than help, I know I'm doing it because of me.
2. I am not a home educator. I hated the speech therapist who sent home countless worksheets. His old therapist recommended various games and activities so all the kids were just playing together. My son loves board games. He hates worksheets. It wouldn't really be quality time for us.
3. I'm on a mission to help mold all of my children into the best little people that they can be and if that means that my daughter needs a little extra help, well then that's what she needs! If you can help to give her that extra leg up in life, then why wouldn't you?
4. Stuff I do on a daily basis is over enunciate my words to prompt her speech, count everything, show her letters and words when I see them. I guess I don't consider that therapy. But at the same time, I do it way more with her than my other kids, that's for sure.
5. While I appreciate not wanting your life and your child to be judged on you becoming PT or OT, if you don't have the repetition, then it's not becoming a learned behavior.
6. It doesn't have to be "fixing," it's about encouraging and not enabling them to be less than they can be. It goes for all kids. If I don't expect my [typically developing] son to do well in school, he will slack and he will live at home forever.
As Lanier questions, is it our job as parents to be our childrens' educators and therapists? Are we measuring our success as mothers by our child's outcomes? Are we promoting development or trying to make our children different? Is this issue exclusive to raising children with special needs?
As always, your comments are welcome...