My husband Chris and I recently took a much needed respite trip to Portland, Oregon. We live in Austin, Texas where the summertime temperatures soar to over 100 degrees for days on end. We wanted to visit a place where we could get a break from our four special needs kids, but also to be able to spend some time outside, away from the oppressive Texas heat.
During our stay, we decided to take a drive through the Columbia River Gorge and up to Mount Hood, crossing the famed Pacific Crest Trail. On this scenic route we drove through some of the most gorgeous landscapes of God’s creation. In the span of a few hours, we saw breathtaking waterfalls, enormous apple orchards, electric purple lavender fields, and snow-capped mountains. We stopped at a local joint in Washington just past the Bridge of the Gods and had the most delicious hard-pressed apple cider and salmon chowder one could imagine. For us, this was just the getaway we needed.
As we drove we listened to a playlist that Chris had made for me a few months back. As serendipity would have it, the theme song from the movie Wild came on as we were driving through the very forests Cheryl Strayed hiked in her memoir that inspired the film. The song, “Walk Unafraid,” was originally recorded by REM. This version was a cover by First Aid Kit and the lyrics touched me that day and they continue to speak to me about my own mothering journey.
If I look back many years, to where this journey began, I was a 27 year old woman thinking I would birth and parent three very perfect, soccer-loving, sleep-away-camp going, super quiet and obedient, violin-playing children. Thirteen years ago, God was laughing out loud at me in my ignorant bliss. Boy, did He have a different plan with so much to teach me. But now, at 41 years of age with my four super special birth and adopted kids, I have learned so much, gained tremendous perspective, and I am so incredibly thankful.
Dear 27 year-old Stephanie,
41 year-old Stephanie
Chris and I have been married 17 years and we have four children. Pearson (13) and Henry (11) are our biological boys and both of them have Asperger’s syndrome. They are both exceptionally brilliant boys with endless amounts of intellectual curiosity about things I never even knew existed. They continue to teach me so many lessons about how to be a good mom. They are the fundamental reason why I have an honorary PhD in special needs parenting, and they have uniquely prepared me for mothering our girls.
Winnie (8) and Olive (4) were both adopted from China and they both have Down syndrome. Winnie has been with us for three years and I met Olive just six months ago.
And here are the things I would say to 27 year-old Stephanie if I could:
Learn to Walk Unafraid by listening to your gut and following your intuition.
From the moment your child receives a diagnosis you will have everyone from your great aunt to the man at the bus stop telling you what you should do to help your child be the best he can be. A neighbor’s cousin has been cured of autism using essential oils! The checker at the grocery store has a customer who proclaims a raw diet is the solution! This is impossible to overstate, and extends especially to medical professionals (pediatricians especially), many of whom have no real experience with special needs children. It is so hard to know what to do when everyone has a (different) strong opinion about what you need to be doing.
For me, I have learned that I am my own best resource. I am the mama, after all. I know this kid better than anyone does. So I research all the things. Like to the death. I will read, talk directly to other parents who are going through this same journey, read some more, and interview the doctors and therapists. I will make appointments to see the ones who seem like a good fit and we will try their technique.
And, by the way, I don’t have time for guilt. If something isn’t working and I feel it in my gut, we politely walk away and move on to the next thing. I find this to be true for my kiddos in all sorts of scenarios. We might see an Occupational Therapist for sensory processing issues. And if after three weeks I just feel like this therapist, who may have been the most highly touted therapist in all of the land, isn’t a good fit for my child… I will quit this therapist.
Yep. Not a typo. If it isn’t working for my child, we just quit. Because realistically I have learned that there are so many other therapists and methods that we can try. We can be at a super overwhelming and over stimulating birthday party where I can see the rest of our day is going to be a nightmare… so we just say thank you and we leave. It can be true if one of my children wanted to join a tee-ball team and the coach is putting way too much pressure on success and not enough emphasis on fun. If I feel like that team is the reason why my child leaves that activity in a rage and she has nightmares that night and fights me to the death the next day about going… we say thank you for your time, and we quit. If my child is taking guitar, and I know it is especially difficult for him because he has fine motor and motor planning delays, but he wants to do it because all of the kids at school are doing it, and he refuses to get out of my car and I find myself contemplating physically dragging him into the lesson even though he is 8 years old…. I stop, listen to my gut screaming no… we say thank you, and we quit.
In this 2016 world of kindergartners who do math on Saturdays because their parents are planning for Harvard, my decisions are often truly unbelievable (inconceivable!) to the moms and dads with the typical kids. Their kids are never allowed to quit anything. Just as the parents before us believed, sticking with the activities you didn’t like is character building!
But y’all, this is more than just dislike for our kids. These activities can be triggering, and they can possibly ruin our family groove for the next three days, or three months. Those other parents don’t know what it looks like in our world and they never will. They never will. So let go of caring about what they think (and the guilt) and move on. You will find the therapists who make you feel so much pride because they help your child find successes. You will find the team or activity that is a good fit because the coaches understand and your child feels validated and happy.
I learned this lesson by walking through lots of fire and wallowing in way too much guilt. But at this point in my mothering I can proudly say that I am walking unafraid and listening to that still small voice inside. Life is so much better when I do.
Learn to Walk Unafraid by finding your tribe.
Special needs parenting is lonely. See above. Unless someone is living it, they don’t understand. I also think that because of our kids’ needs it is often just so much easier to stay in with them. And to take that one step further, as adoptive parents, we are told to cocoon. For even a year! It can be a very isolating existence.
I have learned that I need to find other mamas who get it or else I get very depressed or I go insane. Thanks to the internet, finding those people is easier than ever. On Facebook, I can connect with other people who have adopted 2 kids with Down syndrome and I don’t feel like such a weirdo! I can connect with other China mamas in my area and meet them and their children at the local splash pad. I can even go to Care.com and find amazing babysitters who have knowledge and training to care for my special crew. Finding other people to help you through the hard times is key, but it is also really great to find people who can celebrate the good times too.
The other, more difficult, part of finding your tribe involves setting boundaries. I am blessed to have some wonderful people in my life who may not have special kids, but they are wonderful friends. As much as they can, they really try to understand. But I have also learned that I have to help them understand by communicating our needs and setting boundaries. We live in a great neighborhood where kids play outside all day every day. As you can imagine, that means kids come and ring the doorbell at all hours of the day wanting to play. This one is tough, because a huge part of me is so thrilled to have kids who love and accept us and want to play with my kids. However, the other part of me quickly learned that we have to respect our daily family routine, or things can go downhill very quickly.
During the school year the after school routine is extra important or I have four kids melting down, and I start to cry too. This might mean that I have to tell my neighbors to please text me first instead of letting their kids ring the bell. This was hard for me to do, but again, I had to let go of the guilt and take care of my kids.
Setting boundaries might mean that you have to tell people that they cannot hold your newly adopted child. They probably won’t get it, and in the moment you won’t have time to tell them all about Dr. Purvis, but let go of the guilt and set the boundary. Find that tribe and Walk Unafraid.
Finally, learn to Walk Unafraid by realizing it is okay to be different! (I have learned this last lesson from my girls.)
For our family, being different is the norm. I truly don’t even know what it would be like to have typical kids, and that is okay. God has given me this family, and I wouldn’t have it any other way. I have always hung out with the outsiders anyway, and I prefer it that way.
But having differences means we embrace them, and we don’t try to conform to the norms set by others around us. I have learned that my kids’ differences may mean that they can’t sleep in their bed all night long, so we have literally had a mattress (or two) on the floor of our bedroom for 13 years. Being different might mean it isn’t safe for one of our children to be able to roam the house all night long so we are looking for a crib tent to contain her.
Being different means I have children with severe sensory needs who have visceral reactions to certain textures and foods. I have one child who can’t walk past canned fruit in the grocery store or she vomits. This same child cannot walk down the smelly detergent aisle or she starts sneezing and her eyes water like she’s chopping onions.
Being different means we don’t make these kids sit at the table and finish their liver and onions because that is what mama made for dinner! Most nights we have dinosaur chicken nuggets in the oven and rice with soy sauce too. Chris will often come home later and make something delicious for us.
Being different means I stay at home, but our roles aren’t traditional. Parenting this crew is super hands on, and I don’t typically have energy to make something delicious by the end of the day. (In the time spent writing this article the girls have emptied three boxes of crackers into a leftover Amazon box, poured an entire salt shaker into my sofa cushions, and used sidewalk chalk all over the walls in their room.)
Being different might mean that my children don’t always wear shoes and they might need to wear athletic shorts to church.
Being different means we encourage jumping on the beds and swinging in the house.
Being different means my son (the future herpetologist) has three snakes and a lizard as pets.
Being different means I have let go of so much of that stuff I thought I had to have when I was 27, as I have learned to embrace the wonderful crazy God has given me.
Finally, in my forties, I have learned to Walk Unafraid of this messy, brilliant, beautiful life.
I’ve learned to listen to my gut, quit without guilt, ask for help, set boundaries, love the crazy, and go away alone with my husband! And I’m finally learning to embrace the journey, too.
As a special needs mama, I have learned that I have to Walk Unafraid.