Balance

One of the challenges I feel on a daily basis is trying to find the right balance for our family. I suppose this is something every family deals with in their own way: busy children and working parents make for a busy pace of life that can become rather unsustainable if its not kept in check.

But with a Matthew in our family, this is especially important. Rather than needing a full agenda of social activities and things to do, Matthew thrives on a simpler schedule. He values people spending time with him and activities that help him build his skills and his language. Big parties, fancy activities and exciting adventures come in second to the more simple daily routines like eating, resting, reading books and playing together.

I have to admit, this has been a difficult adjustment for me to make. I’m a very social and busy person—I thrive on hosting gatherings, spending time with friends and family, and just being together with people. I also deeply value alone time and quiet—but neither of these things is best for Matthew. Not large social events and not time for me to retreat alone to my room to recharge.

That doesn’t mean I don’t need them, though. I think it’s important to recognize that each of us in our family has needs and desires, and we should work together to meet as many of them as possible in a way that creates balance for our family.

My husband Aaron is gone overnight this weekend. Rather than this being a stressful time, it’s been a lovely overnight with the kids. I’ve kept things simple—no big social gatherings or parties. Just us being together in simple ways. Matthew thrives in this kind of environment. He’s been calm and focused the whole time Aaron’s been gone, because he’s gotten a significant amount of my attention. And then when the kids are down, I’ve also gotten a chance to have some quiet alone time, which I’ve needed too.

I don’t know that life with Matthew makes balance any more challenging than it is in other families—but I do find that I need to be more intentional about making sure everyone has their needs met.

I’ve said it in blog posts before, and I’ll say it again: the best place for our family, where life feels the most simple and balanced, is when we are together outside somewhere. Hiking, camping, snowshoeing, playing on the beach, walking—these are the things that help us feel the most calm and enjoy being together. Being outside gives us the balance we long for, which is why we go out together a lot.

I am grateful for weekends like this one, when life is simple enough for us to enjoy being together. Matthew’s in a good space, and so am I. That matters a great deal these days.

Where We Are Now

We’ve reached a plateau in our adoption and parenting journey with Matthew, at least that’s how I would describe it. We’re walking the flat ridge that stretches pretty straight in front of us. We know that inclines and declines are still ahead, but at this point we aren’t worry about bracing ourselves for either, because what we see ahead is similar to what we know already.

Our family is coming up on celebrating four years of having Matthew home. I follow several groups on Facebook that include families traveling to China to pick up their children. While that journey is familiar to me and I remember ours well, it also seems like it’s been a while since we did travel. Back then life was full of adoption questions—of doubts, of fears, of anticipation and excitement. It was a good season, but the farther down the road we get, the more I realize that it was exactly that: a season.

Now we’re in the living season. The digging-in-and settling-in-and-doing-life season. In some ways I miss the big moments that the adoption season brought us, but in other ways I’m grateful for the chance to get down to just living life. It’s a good place to be.

I thought it might be helpful to give a few updates about Matthew, as I know many people still find themselves to our blog and are interested in what the path is like after a child is home. Ours is just one story, as I always remind people, and each child and family are different. But I learned a lot from reading about the stories of others (and still do) so I put this forth hoping it gives wisdom or ideas to someone else.

Developmental: Matthew finished one 12-week course of an ABA-based treatment program for Autism in the fall at our local children’s neurological center. It was a good experience for him, but perhaps it was even more helpful for Aaron and me (and my parents, too, who also participated). It gave all of us tools to use when parenting a child on the autism spectrum who also exhibits ADHD and sensory processing disorder behaviors. Matthew’s still a busy guy, still working to settle himself in the social world, but we all know better how to help him do that. We all feel more confident managing his challenging behaviors. This is such a good thing. And we are working to see if our insurance company will approve a second 12-week session of autism preschool this spring. The teachers and we both feel like another round would really benefit Matthew. He also continues to attend his morning developmental preschool program in the school district where we live. This program doesn’t help as much with his developmental challenges, but it does give him a rich learning environment where he can practice his social and intellectual skills.

Craniofacial: I just made our annual appointment with the Craniofacial Center at Seattle Children’s Hospital. It’s been a rather quiet craniofacial season for us. We were there last August seeing the craniofacial speech language pathologist—hoping to rule out VPI (velopharanyngeal palatal insufficiency)—but unfortunately Matthew doesn’t yet have enough spoken language to make this determination. When I made our appointment this year, I was told that there is a possibility Matthew might need a lip repair surgery this summer before starts kindergarten. I WAS SHOCKED. Honestly. Our craniofacial team hadn’t previously said anything about another surgery this summer, and Matthew is making so much progress with his speech production—moving his lips into position—that the idea of surgery that interferes with the muscle movements of his lip makes me terrified. I believe this procedure is “elective,” which means we can likely say NO. But of course I also want to make all decisions about surgery with thought, the right amount of input/wisdom from doctors, and also in larger consideration of Matthew and his development. I’ll keep you posted and hope we can work it out to skip this surgery so as to keep Matthew’s language development intact and moving forward.

Speech/Language: Well, our boy still isn’t talking in sentences, but he’s doing a lot more word approximations and using a ton of signs. I’d really like to seek out a speech apraxia evaluation and hopeful diagnosis for Matthew, because every doctor and speech therapist who sees him agrees he has a motor planning problem or oral motor delay which is contributing to his lack of spoken language. We also have an appointment at Seattle Children’s in late February for an evaluation in their communication center—and we hope the outcome of that is a referral/prescription for an alternative communication device (which will likely be an iPad with a speech program on it).  Since Matthew starts developmental kindergarten in the fall, it would be wonderful if he could be in that program with a way to communicate with his classmates. The biggest challenge in Matthew’s speech/language development to me is that he has so many factors impacting his delays. There’s the oral motor delay, which means he actually can’t form words. But then there are his many social delays. We haven’t had much luck finding a speech therapist who advocates for supporting him in both ways—most of our team either wants to support the social OR the motor. That’s been rather frustrating to me.

In terms of just being a general little guy, Matthew is still very socially different than his peers (and honestly, different from all other little kids). He exhibits some autistic behaviors in terms of his lack of communication and inability to read the social environments in which he lives. Sensory processing disorder also plays a huge role in his impulsive, hyper behavior. But he can also be warm and connecting—he makes eye contact readily when asked.

The biggest thing about Matthew in this new season is his willingness to smile and laugh. It’s like he finally found his smile once again. Yohan, who is Matthew’s caregiver, took all the photos in this post—and I just love the variety of smiles and happy faces that Matthew exhibits.

It’s a good life—a busy life, which is why I haven’t blogged more in recent months. We are still living daily with the impact of Matthew’s cleft lip and palate and the neglectful orphanage in which he spent his first 18 months. But we also know that every day, every week, every month that he is in our family gives him just that much more opportunity to grow and learn at his own pace.

And for that, we are most certainly grateful.

Saturday morning

It's a beautiful sunny, Saturday morning, and I just got home from a walk with Matthew and the dog around our neighborhood. We are midway through a day filled with many soccer games. We just returned from my nephew’s game earlier this morning, and in a few minutes will head out the door again to watch my middle son play with his team.

While walking on this glorious fall morning, it dawned on me that even though we do have moments our house that feel hard and overwhelming, I'm grateful that most of the normal times feel exactly that: normal. Perhaps to some families, our family life looks a little irregular. I suppose it is, but it's also the only thing we know anymore.

I think one of the biggest challenges about parenting a child with special needs is finding enough time to rest and have a break. Yes, I do wake in the middle of the night worrying about the future, but I'm more likely to worry about tomorrow and when on earth I'm going to find even a minute to myself. I'm sure this situation is made worse because of the busy frenzy with which current parents and children live. Our post-modern parenting world is full of too many choices, opportunities to fill our lives full to the brim, all in the name of giving our kids the best childhood we can.

What's funny is that for me as a parent, what I really worry about isn't letting my kids participate in every single activity, but hoping that they are getting the meaningful and purposeful childhood that I was lucky enough to have.

There is always a way to fill the schedule too full and end up feeling exhausted and worn out all the time. I think this can even be a bigger problem when parenting a child with special needs. There is more energy needed, more constant vigilance, more time and support, than with most neurotypical kids. At least that is the case in our family. So one of the challenges I've given myself these days is to really evaluate our lives and figure out how to make our days simpler so I can get the break that I need once in a while. I know Aaron needs a break too. 

On sunny Saturday mornings when I've gotten enough sleep and have the energy to problem solve, I'm encouraged by the thought that there are breaks to be had if only I plan for them. No, I can't control the future, but I can create enough rest and downtime in our family so that I don't continually wake up at 2:00 a.m. worrying about the next day, the next week, or 10 years from now.

I'm trying to do this better. I have said 100 times that this parenting journey with Matthew continues to refine and shape me in ways I never expected. Here, then, is another example of just that.

It is actually a sweet sort of life we live most days . . . When Matthew is doing okay and is acting rather even, when we keep our lives simple enough to get some rest, and when we each have a chance to have a break, then it's all very doable. I don't want you to think it's terrible and hard all the time, but the reality is we do have some very hard days as well. 

It's an adventure, no way around it. One I'm both grateful for and terrified of, but I suppose both fear and gratitude our normal parts of living a full and meaningful life. A Saturday filled with sunshine and fresh air certainly helps me keep some perspective about it all. 

The 2:00 a.m. Brain

As any parent of a child with special needs can tell you (and probably any parent can tell you), there’s always a chance you will wake up at 2:00 a.m. with a kind of fear in your heart. It’s not every night, thankfully—not even most nights, truly. But at least for me, it does happen with some regularity, and it’s never fun.

I start my post with that paragraph simply to say that this has been a season of 2:00 a.m. wakeups for me. Don’t get me wrong—it’s also been a season of lovely new adventures, measured growth in development, and plenty of time to play and have fun.

A couple weeks ago, we entered back into the school year routine. Matthew is doing two preschool programs right now: the school district developmental preschool in the morning and then an intense autism day treatment preschool program each afternoon. The autism preschool requires six hours each week of involvement from our family, which we are thankfully spreading between Aaron, my parents, and me. However, the drop offs and pickups, the transitions, and the shuttling from one program to another has left me feeling extremely worn out.

So why do we do these things? Because we continue to have such high hopes for our boy. The progress is slow (always) but it’s there, which is encouraging and hopeful for me.

I must admit, if I’m being honest, that I’ve spent much of the past week wishing our story with Matthew was different than it is. My heart turns toward jealousy when I see all the photos on Facebook of children coming home from China who have normal development—who adjust well and start speaking English and fit right into the family routines and family life. I grieve the loss of the child I hoped would come home—my third child, a kiddo who could develop normally, learn to talk, and now be a typical four-year-old.

Instead I spend my days with a child who barely acknowledges me—who struggles to communicate his needs and soothes himself with autistic tics like hitting his head, hurting parts of his own body, spitting on his hands and smearing the spit into his hair, or throwing toys with great force. We have dents in our walls and woodwork, a pile of broken or destroyed toys that sit on a shelf until we finally shuttle them to the garbage can, hoping our big kids don’t see the destruction their youngest brother has wreaked on their favorite childhood toys.

We’re seeing signs of stress on our older children right now too—earlier this week when I asked her to quiet her piano playing, my daughter said, “Why don’t you ask Matthew to shut up instead. He’s the truly loud one in the family.” I was slightly aghast at her reaction, but I also identified with the feelings she expressed. Four of us in our family spend our days tiptoeing around the fifth—keeping the house quiet when he’s sleeping, adapting our routines to make sure he can watch his favorite television show or eat a meal when he’s hungry. Unfortunately Matthew has very little tolerance for delayed gratification—probably because he doesn’t have enough language to really understand what it means—so we pick our battles carefully. We do tell him “no” regularly—but it’s always a battle to help him understand. Re-directing his attention is our only real hope of success.

Sometimes the big questions loom—who will our boy be as he gets older? What delays and challenges will he outgrow and what will stay with him for his lifetime? How do we do some of the “normal” things our family likes to do, like traveling and eating meals at restaurants? (We haven’t had a meal out together since Matthew was about two-years old). Is it okay to continue with some of those things we love, even if it means leaving Matthew behind? Will he be sad or impacted? Does he even know?

Right now, during this particular season, it’s impossible to leave Matthew unattended for even a minute. Maybe that doesn’t sound like much of a big deal—a normal thing with raising children—but by the time my big kids were about three, I could be doing things in other parts of the house, trusting they would come find me when they needed something. Matthew is almost five and we have been attending to him in a very intense way since he came home from China. Destruction ensues when we don’t keep our eye on him. He’s also become very demanding in terms of our attention. This is actually a good thing—he’s learning to value social interactions—but in the normal routine of life, after a long day of work, it feels really overwhelming to me some days.

Some days I cry for no reason. Well, actually for good reason: the weight of this life feels very heavy upon my shoulders. It’s easy for us to feel isolated and alone.

It’s hard even to write these words—I’m such a “glass half full” person in general. But I also feel called to be honest about our journey—to tell the truth when it is hard. Recently I’ve read a couple posts from adoptive parents who are walking a similar journey as we are. Each time I stumble upon something like that, I feel buoyed and encouraged by someone else’s shared experience.

I do know that it’s not even as hard as it could be around here. I think of kiddos who are battling childhood cancer or a parent who is caring for a child like Matthew on his/her own with no partner beside. Some children spend their lives in wheelchairs with mobility issues or are prone to very violent, destructive behavior. These are all very hard stories, and I feel deeply for anyone walking a hard path.

But when our family story feels heavy beyond what I can tolerate, then I find myself awake at 2 a.m. worrying about the little things. How will I get through today? What will tomorrow bring? Will this be my life and my story forever?

I know these questions don’t have concrete answers, and they probably aren’t even the most helpful questions to be asking all the time. But I wasn’t expecting so much grief and loss in this adoption journey. I wasn’t prepared for the jealous twinge in my heart when I look around and see other families and their “easy” adopted kids. In some ways it feels random and unfair to me—why did they get a kid who is easy while mine is so very difficult?

And yet I’m the first person to say I don’t believe life is “random” or “fair.” I do believe in the Holy Spirit’s calling, and I believe in a God who equips us for the challenges we face. Some nights, around 3:00 a.m., I finally remember these truths and begin to breathe into them with my body, and a kind of loving presence fills and covers me until I fall back asleep.

It’s that loving presence that helps me survive each day right now. It’s that presence that soothes me like a mama, teaching me how to soothe my boy. And even when all else is extinguished, there remains a tiny flame of hope in my heart—burning quietly but steadily, even at 2:00 a.m.

It’s a season, I keep telling myself. This too shall pass.

Oh how I hope those words are true.