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.

Some updates

Since my blog is read regularly by people in the process of international adoption, I’ve been wanting to post an update about some particular areas of our adoption that might be relevant to others who are behind us in the process—especially those considering or in process to bring home a child with a cleft lip and palate or a kiddo with developmental delays:

1) VPI: One of the possible concerns for a cleft lip and palate kiddo is “Velopharanyngeal Insufficiency” (VPI). This means, in a nutshell, that the soft palate cannot close properly, which leads to a situation where children with repaired palates cannot make the wide variety of sounds needed for language development. Matthew is still very delayed in his verbal communication, and at this point can only make a few sounds with his mouth (most of the vowels, plus a couple consonants including “m,” “y,” and sometimes “n”). 

One of the complications with Matthew is that we also suspect he has an oral motor delay. When we ask him to imitate sounds, he is literally unable to copy the sounds we make with his mouth. Our ENT (Ear, Nose and Throat doctor, otherwise known as an otolaryngologist) has suggested that there is a very likely correlation between Matthew’s palate functioning incorrectly and an oral motor delay that is also neurological.

Since Matthew has other neurological delays (including social delays, impulsive behavior, and behaviors that look very similar to Autism Spectrum Disorder), his language delays could all be part of larger neurological issues. But we also want to make sure the structure of his mouth, particularly his soft palate, is such that he CAN actually make the sounds required of him for language. We have an appointment scheduled for August 6 with an SLP at Seattle Children’s who will perform an hour-long diagnostic session determining whether Matthew’s palate is structurally sound for proper closure in language formation.

2) Autism Day Treatment Program: We are thrilled that we’ve been accepted into a local day treatment program for Autism that has received great acclaim and is having incredible success in helping kids with social delays. Whether or not Matthew truly has Autism Spectrum Disorder or is just really impacted because of such a neglectful orphanage experience, we do feel like the diagnosis of ASD at this time is a good one for allowing him to receive services and support. The program he will be completing is an intensive 12-week program that requires parents to be in the classroom 50% of the time. This is a big time commitment for our family, but we are willing to put in the time if it yields success for Matthew. I’ll keep you posted as to how it goes.

3) IEPs and school placement: When Matthew turned three, our local school district wrote an Individualized Education Plan (IEP) for him which includes several hours a week of developmental preschool services. He was in a traditional developmental program until this past March, when we moved him to an extended day, ABA-focused autism program. He made incredible strides for the four months he was in that classroom. However, at the end of the year we learned that that particular program had been discontinued in the district. I was told it had something to do with new “best practices in autism,” but honestly I also believe it’s a funding and bussing issue. I’ve had many conversations with folks in the special services department of our district, and we’re still working out the best placement for Matthew with the most support. I remember teaching high school and being the “teacher” at an IEP meeting. Now I’m one of “those parents,” advocating for my child and the optimal environment in which his learning needs will be met. It takes a lot of work but it’s also really worth it.

I was recently asked to be a speaker at our local courthouse on National Adoption Day 2015, which is the Friday before Thanksgiving. I have said “yes” to this request, but I’m thinking about what I might want to say on that day. I still believe deeply in adoption—for our family and for others who believe it’s what they are supposed to do as well. But being on this side of the process, in the thick of parenting a child with significant developmental delays, I’ve also lost my rose-colored glasses and see how hard this can be. I’m glad we did it—for Matthew, who now has a home and a family to advocate for him through all this—and for us and the many ways our adoption has changed us.

I have decided to wait a few months and see what kind of wisdom finds me—what my heart tells me to say about adoption on National Adoption Day. I do know a few things: I love my kid, I don’t regret adopting, and I’m trying to keep myself open to the many ways we are being shaped and changed because of having Matthew in our lives.

Matthew’s been with us for three years now—that’s twice as long as he lived in the orphanage. He is truly ours in so many ways. And I’m truly grateful to have him. Thanks for joining us on this crazy ride!

A family outside

There is no place our family is happier than when we are out and about, having adventures. We're all especially happy in the woods or on a trail--or even just playing in the backyard.

The arrival of summer affords us the pleasure of spending a lot of our time in the fresh air. We've planned many adventures in the coming weeks that will take us away from home and into the woods or mountains.

As we count down the days until school is out (3!), we're squeezing in some outside fun to whet our appetites for a long and glorious summer in the fresh air.

Matthew had a lot of fun at friends' house with this little shopping cart.

Our boy just jumped on this bike with training wheels and he was off!

Heading back to the car after a bike ride and some park playtime.

Our first al fresco dinner of the summer.

Heading somewhere: I love this shot because of Matthew's relaxed car seat position.

A little horse time for Miss Maya.

Swan Mamas

Tonight Matthew threw the biggest tantrum I think he’s ever thrown. It’s hard when he gets so worked up and frustrated—hard to see him so upset, and also hard to know how to respond. I probably do a terrible job at it, since I get pretty worked up when he starts throwing toys and hitting me with his fists. He’s trying to be noticed—trying to tell me something—but I just don’t know what it is.

Tonight I couldn't, for the life of me, figure it out.

We’re seeing increasing frustration from Matthew lately, and I don’t blame him. He’s signing a bunch and he’s using his body to communicate now a lot more than he used to (pulling us by the hand, pointing, signing “yes” and “no”) but he’s still very limited in what he can tell us. I’m sure he feels a bunch of complex things—feelings, emotions, thoughts—but he has very little skills to actually communicate those things to us.

Which leads to frustration, which leads to meltdowns. Which leads to giant, huge, hard tantrums like the one tonight.

Every day isn’t hard at our house, but there are enough hard moments that sometimes I want to run and hide in a corner. I’m pretty sure most people don’t really know what it’s like each day . . . don’t know how sad and hard and confusing it is to parent a child who is so delayed. Some days I still feel totally defeated. Some days I have no idea how I’m going to do this for another day, let alone another decade. I long for an ordinary life—where we can go out to dinner as a family, have a five-person conversation, leave our kids with friends while we have a date. These things don’t happen for us. Matthew’s a hard guy to have for any length of time. It’s also hard on him to be left somewhere strange or unknown. He’s not very adaptable.

And yet miracles abound in this life.

A couple months ago I read a book called Swan Mothers: Discovering Our True Selves by Parenting Uniquely Magnificent Children. It’s by a woman whose son has autism spectrum disorder and ADHD, just like Matthew. In the book, she writes about her parenting journey and along with all the hard seasons, the way her soul is shaped and changed by the unique little boy who is hers. I resonated with so much of what she wrote—I felt the hard moments because I know them in my own life. But I also celebrated the small acts of mercy, the support of community, those “a-ha” moments with our “unique” children that make us want to weep..

It’s making me stronger. Aaron too. Without knowing it or asking for it, we are being changed in pretty incredible ways because we have Matthew to love and care for.

Just this very morning, I had a woman who works with me come up and say, “I heard you talking to someone about how you have a son with ADHD. I wonder if I can ask you some questions.”

Turns out, she’s really struggling with her nine-year old son. In addition to ADHD, he also has a really hard genetic condition. She’s drowning with behavioral issues, and she feels really alone. She is desperately in need of a behavioral specialist who can help suggest some strategies in parenting her son. She’s discouraged and feels like a “bad parent.”

I almost started to cry as she shared her story with me.

Turns out we’re not the only ones who are struggling to parent a “unique” child. Turns out there’s a whole army of moms and dads who feel isolated and lost—who are angry about the path they now have to walk, who feel guilty for feeling angry, and who dearly love their child even though it’s hard.

A dear friend and I started this “adoptive mom group” in our neighborhood. We’ve met a few times and it’s been nice, but we were reflecting a couple days ago that really instead of an adoptive mom group, what we need even more is a “mom with a kid who has challenging behaviors” group. This scenario isn’t unique to adoption—in fact it’s present in all sorts of parent-child relationships. Struggling kids, especially kids with neuro-challenges, make for really hard family life and challenging parenting situations.

And there are many people I know who are struggling.

On nights like tonight, when Matthew is raging for some unknown (but likely VERY valid) reason, I try to hold tight to the things I know are true:

1) Matthew is in our family for a reason. I’m not sure I know what it is, or why this boy ended up with us, but there is purpose in him being in our lives.

2) We have the tools and resources to love and care for him, even though it’s hard.

3) We are being changed by this experience—profoundly changed. Radically, to-the-core-of-our-being changed.

4) We don’t have to be alone in this journey—we can reach out to other parents who “get it” and find support, kind words, caring hearts, and encouragement.

Please, if you have a child who is hard, don’t be a stranger. Email or call me—tell me your story. Find other swan mamas, like me, who are also on this journey of discovery. It’s hard, but it doesn’t have to be unbearable.

And it might just change your life, if you're brave enough to let it.

Loving this boy

I’m sorry I haven’t been a very good blogger lately. As I said in earlier posts, I’m getting to the point in our adoption journey with Matthew where I’m struggling to know how much to share in such a public venue. This is Matthew’s story, after all, and while I’ve never tried to tell the story from any perspective but my own, I’m trying to discern where that magic line is where I tell stories that aren’t mine to tell.

I’ve also realized lately that I’ve become good at talking about the things that are hard—and believe me, there have been many hard things in this adoption journey. I have wanted to be honest about our adoption story—particularly the hard things I wasn’t expecting. 

There continue to be changes and movements with Matthew in his development. We’ve done some genetic testing (which revealed nothing—a relief, to be honest!) which helps us rule out any kind of large genetic concerns, but also affirms even more that Matthew’s delays and challenges are due to poor prenatal care or a lack of stimulation and attention during his early months of development.

We are also working hard to support his development by moving him to a preschool that provides extra support in Matthew’s social development (with an extended day schedule) and having regular consults with a behavioral specialist who knows and works closely with kids on the autism spectrum who have behavioral issues due to language and communication delays. All these things have been helpful in providing more clarity about Mathew’s delays.

These are all good things—moving us forward to give our kiddo as much support as we possibly can.

But that’s not really the point of my blog post today. Today I want to be that gushing mama who is so proud of her boy despite his many delays.

We spent this past weekend at an indoor water park in Northern Idaho with my husband’s family. Matthew had an amazing time playing in the water—exploring the river, going down the little kid slides, and just being a kid in his joy and delight. 

But at some point on Sunday morning, he got kind of tired and I took him for a ride on a raft on the meandering river. He put his cheek to mine and started to fall asleep in my arms, and I had this insignificant yet incredibly meaningful moment where I felt his little body in my arms and his soft cheek pressed against mine, and I realized how much I love him and am grateful he’s my kid. I write a lot about his delays and challenges, but truth is, I’m crazy in love with this little boy, just as a mama should be.

You might meet him and see a boy with delays, but to me he is perfect and gorgeous and doing just the things he should. I’m certain that in all the world, I’m his number one cheerleader. I couldn’t be more over-the-moon about him.

I don’t know why this realization surprised me so much. Perhaps it’s because I spend a lot of my time analyzing Matthew’s delays and challenges, and trying to find solutions to them, and the shiny luster of the mama relationship takes on a murky din when so much effort is spent just getting through each day. 

But when I actually have the time to reflect on our boy, I’m just so in love with him and so proud of how far he’s come. He’s adorable and his little body is perfectly formed. Yes, he has some strange behaviors, and he still struggles with communication. He’s a bizarre little guy in some ways, but all his bizarre behaviors are really normal and familiar to me, and they are him. And I love him so.

I guess mostly I just want to admit that despite his imperfections, he’s wonderful and beautiful to me, and I’m grateful to have him in my life. He’s teaching me so much each day and I wouldn’t trade him or his delays (and I really mean that) for anything. Matthew is making me the person I am (just as Maya and Sam are) and each of my three children plays a special role in helping me love them and others in the world better because I’ve learned to widen my arms and be more accepting and loving of everyone I meet.

And I know that in many ways I have Matthew to thank for that broadening of my love and my acceptance.

So yes, delays and challenges go on around here, but yes, I’m also head-over-heels in love with my boy. Every kid needs a mama who loves him just as he is, and I’m grateful to finally be in a place where I can say with honesty that I can give Matthew that kind of love. It has changed him for the better—yes—but it has also changed me.

Two months in photos

I'm sorry I've been such a terrible blogger lately. It's actually been a wonderfully full two months, with Matthew starting a new preschool and some big steps for him socially and with his language development. But I'm spending so much time just living each day that I haven't found the quiet moments to reflect and write like I normally do.

I'll get back to more regular posts, I promise. But for now, here are some pictures, which give you an idea of how we've been spending our time.

Sledding in the Cascade Mountains

These kids were regular daredevils!

Matthew mostly watched (and thanks to Bebeth for this great photo!)

Aaron reading to Matthew and our friend Amara

Sunday walk on the Centennial Trail

Maya and Sam rode bikes while I jogged.

Watching Cousin Parker's hockey game

A trip to Port Townsend with our friend Lucie, who visited from Colorado

Matthew after his first day at his new (full day) preschool

Maya and her BFF Emma on pajama day at school

A canoe ride in one of the canals at Ocean Shores

A 70-degree day on the Washington Coast. Wow!

Finally a little time

As I write this, I’m sitting in the therapy office where Matthew gets speech therapy and occupational therapy each week. Since his therapists are enjoying working one-on-one with him right now (without me in the room), I have the privilege of sitting in the waiting room for over an hour on Tuesdays, giving me plenty of time to read, email or catch up on writing. I’ve taken to bringing a cup of tea with me when I sit. It’s funny how I’ve learned to snatch the quiet moments when I can. You might not think a children’s therapy waiting room could be soothing, but trust me—in my life, it’s a huge gift.

Our boy is getting so tall these days.

I’ve been looking for some time to update the blog—the days are really full right now trying to keep up with the general tasks of living coupled with the extra tasks required to help support Matthew win his development. I’m still working on what this blog is—part journal, part chronicle, part place to record and share stories of parenting Matthew.

But once in a while I feel the need for a basic update, which at this time is long overdue.

We’ve had some setbacks in the past several weeks, but we’ve also jumped ahead several steps, which is exciting to report. The holidays were hard in many ways—a medication change along with the loss of routine turned our rather well-adjusted kid into a nightmare-of-a-boy for a few weeks. We’ve moved through that, gotten Matthew’s meds back on track, found our rhythm again, and things seem to be moving forward nicely.

Love all Matthew's newfound smiles

There are also increased behavioral challenges that are zapping us of energy, but it’s funny—so much of Matthew’s current behavioral stuff feels frighteningly familiar to what we dealt with when Maya and Sam were babies. Defiance, challenging directions, pushing boundaries. I keep telling myself, “this is Matthew’s job—to figure out where the boundaries and limits are.” The thing that makes everything one notch more intense is that we’re parenting Matthew without his ability to talk to us. So trying to find the motivation in his behavior sis hard, as is finding a currency that works well for consequences (no T.V., time outs or time ins, taking away toys, etc.). Things have gotten challenging enough that we finally turned to a psychologist who specializes in kids on the autism spectrum to offer some strategies and suggestions to us. We met with her last week and have scheduled her for a “home visit” so she can come meet Matthew and see him interact in his home environment. Then at a follow up session, she’ll help us make a behavioral plan with some adjustments to our current routines and some consequences for behaviors. We are both excited about adding a new person to our “team” who can help give us some better strategies for supporting Matthew’s good behavior.

So those are the hard things. But there are so many good things to report too.

It's SO good to be outside together.

First of all, I feel like Matthew’s receptive language has reached a new level. Even though he doesn’t have very many skills in communicating with us using words, he’s comprehending SO much of what we say, reflected in his ability to do what’s been asked of him, to complete a task, to respond in some way. He’s also putting two and three word signs together to communicate things that are more and more complex. One of the challenges of a non-verbal kid is not being able to know what he’s thinking or what he wants. Words tell us so much about a kiddo. Aaron and I are both getting really good at inferring what Matthew needs, but sometimes we can’t figure him out. So the more things he can sign and express to us, the smoother our daily routine and life seems to be.

Matthew has also become increasingly more social. For a kid who seemed to live in his own bubble for the first two years of being home with us, it’s exciting to see him awaken to the world around him. He continually seeks out members of his immediate family—asking them to play with him, getting their attention. As I’m sure you can imagine, this is also somewhat exhausting, especially if I’m the only parent at home with three kids who all need parts of me. But we try to rejoice in the small miracles even if they wear us out sometimes. We realize how important these steps forward can be.

Matthew is quite the hiker!

I don’t exactly know how to say this, but I feel in many ways like the shock of having a child with developmental delays and special needs has kind of worn off. It’s no longer keeping me awake at night as I panic about the future, about all the questions with no answers, about all the extra energy expend loving this little man in our family. There are still challenges, yes, and will probably always be. Some of the behavioral issues take a lot of energy to work through, and I would wish those away in a heartbeat. But the only way to have Matthew is to have the boy and the challenges. And I love this kiddo with all my heart, so I’ll take the whole Matthew.

Watching the SuperBowl together with cousin Hayden.

Maybe one day I’ll be able to tell you Matthew is speaking in full sentences or has friends who want to play with him or something momentous like that. But for now I’ll settle for the small miracles—the baby steps forward—that make me grateful life keeps moving on. I’m letting go of my fear and embracing this beautiful, complicated, treasured life that we are living together.