Friday, September 4, 2015

Taking the Plunge

Parenting special needs children reminds me of climbing a steep mountain. Standing at the bottom, you feel quite small, overwhelmed, lost, and scared. You know there is no way around this mountain. The only way to reach the destination for your child is by climbing step by step up that mountain. But sometimes deciding to take that first step is the hardest one.

I remember standing at the bottom of my mountain, my journey, 10 years ago. I remember exactly how I felt when a neighbor told me she thought my daughter had autism; how I cried and cried, holding my daughter in my arms, completely scared of what to do next. How I mentioned this to our pediatrician soon after, and how he referred me to an early intervention class. I remember walking into that room, seeing the needs of the other children, and only staying 5 minutes because I was overcome by the fear of what my daughter's future might hold, of what my life might now become. I wasn't ready to take my first step on the mountain as her parent. In the following months, I turned away therapists that were coming to our home, and discharged her from crucial services because I was in such denial that anything could be wrong. I knew there was a mountain looming above me, but at the time, I thought I could go around it, because nothing was wrong with my perfect child.

I finally took that first step when I heard about sensory processing disorder, and knowing deep in my heart that this had to be her diagnosis. I willingly called an occupational therapist for an evaluation, and went to another one after that, because the first one didn't seem right for my daughter. I was starting to develop that intuition that all parents of special needs children have, where it's like a voice is guiding you to all the right doctors and therapists, where one doctor leads to another, and another.  Once I gained knowledge about her diagnosis, and how to treat it, I began racing up that mountain, as fast as I could, gaining so much knowledge and support that nothing could stop me now. I thought that once I reached the top, everything would be better. The closer I got, the faster I ran. That beautiful view was coming, the end of my struggles as a parent. She's going to be okay, I can do this.

But then she wasn't okay when I reached the top. She still needed more help.

Being a special needs parent isn't just climbing one mountain, I realized. Once you climb one, it only brings you to the edge of a steep cliff, where you can celebrate briefly this victory, but then the only way out is down, plunging into the depths of the unknown water below. You look down, thinking how can this be? I thought we'd made it, finally! I've already come so far with my child!  How can there still be more to do? You then see another mountain ahead, past the water, and so you jump down, treading mysterious waters, searching for answers again, until you reach the next mountain to climb.

Figuring out school placement for my daughter has been an uphill battle, full of plunges along the way. Preschool days were fun and easy, but once elementary school began, I jumped into those waters again until I felt good about a certain placement. So we tried special day class, but it wasn't long before she would tell me she didn't feel safe with kids who had unexpected behaviors. Back in the water we went, swimming until we found another solution. Resource class, small group with partial mainstreaming. It worked! She made progress exponentially that year! We were celebrating on the top of the mountain!

Until suddenly, we were pushed over the cliff into the water again, because the school district decided to try a "full inclusion" program without telling any parents. She had no choice but to attend a regular class by herself with some support during the day. I saw her confidence and cheerfulness crumble before my eyes and I knew it wasn't working. Without any options at that point, as far as I knew, I told the school district I wanted to try homeschool, halfway through the year. Talk about taking a big leap. It started working! She was making progress! But then I became pregnant, and I knew we needed to take another path for her so I could focus on the new baby when the time came.

I was a pregnant mother, drowning in the water by this point, having no idea what to do. It wasn't until a wonderful teacher listened to what I wanted for my daughter: a one-on-one aide, all day, in a regular classroom. I was told it would be hard to get, but she helped me, she pulled me out of the water to dry ground until we got to that IEP meeting near the top of the mountain. We got the aide, just before my baby was born, and she has been with my daughter for 3 years now. We celebrated, and have been celebrating ever since. But I know I'll be taking the plunge soon, because next is middle school. I'm ready to do it, eyes wide open.

You can't be a special needs parents without taking plunges, without immersing yourself in the experience. You have to put your whole self into it, eyes wide open, not fearing anything. And as you do this, you will also realize that your child for whom you have been searching for answers to all your questions, fears, and worries, was climbing that mountain right along side you the whole time. This journey is just as frightening at times for our children, because we are asking our them to go outside their comfort zones and push a little harder than they really want to. We do this because we know that's the only way they will reach the top of the mountain, too, and discover the next challenge in their path to overcome.

I feel honored and blessed to walk side by side up the mountain with my child, learning how to help navigate her life in a world that must seem terrifying. I will continue to climb every mountain with her, and to plunge into unknown waters with her, because she is worth it. And the more I am willing to take the plunge, the more I can heal as her mother.


  1. Hiking is hard. But the views are great. Thanks for this.

  2. Beautiful post. I too clinged to Sensory Processing Disorder because it made so much sense. And when we did things the OT suggested. ..we saw results. What kinds of things made you think it wasn't autism?

    1. The fact that she could talk, and song songs with me, and name colors and shapes. I took me awhile to even allow other specialists to tell me she had autism.