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.

Some Honest Mama Words

 Lately I feel like I’m hovering somewhere in between “adoptive family” and “special needs family.” As Matthew’s challenges with Autism become more pronounced, it seems like so much of our energy is being spent finding solutions and resources to support parenting him with his current struggles and behaviors. It’s easy to lose that sense of adoptive family, which is something I have really delighted in and been so proud of since we began our journey to adopt Matthew.

I remember in our training before Matthew coming home that a social worker with our adoption agency described the point in an adoptive family’s journey when the family “normalizes” and adoption, rather than being a big deal and central to the family’s identity, becomes just past of the history but not the present. She also told us that sometimes it’s just when parents really settle into a sense of “normal” that an adopted child begins to ask the big questions about his or her birth and early months. In other words, one person’s loss and questions subside while another’s begins to increase.

One of the realities of Matthew’s current developmental delays is that he’s not cognitively or emotionally at a place where he’s even close to asking those questions. I don’t believe he has any sense right now that he is adopted, which is probably both a blessing and a curse. Who knows.

My ability to really know what his experience is like feels limited, which makes parenting him hard. There are so many needs to meet—physical needs, learning and developmental needs, and the emotional needs that present themselves through day-to-day interactions and routines. I can’t even begin to imagine addressing the deeper issues related to belonging, identity, etc. I don’t want to forget about these, as I’m sure that sometime in Matthew’s journey, they will come up.

But in our “normalizing” of Matthew into our lives, I do feel a subtle but present transformation from “adoptive family” to “special needs family.” Our family blog is listed on several cleft lip and palate websites as a resource to other families currently dealing with cl/cp or considering it from an adoption standpoint. But I find that Matthew’s issues related to cl/cp become fewer and fewer as we focus on the challenges that are currently in front of us.

I’m not sure why I’m rambling on so, except perhaps this is my way to apologize to those readers who are reading only for the cleft perspective, and to tell you that I don’t have much to say about it anymore. We’re in the long waiting stretch—several years from the bone graft and gum surgery, but already considerably past the lip and palate repair. We do have speech challenges, which are probably partly resulting from Matthew’s cl/cp, but those challenges around compounded by Autism, orphanage neglect, and what we now believe to be apraxia of speech (or some kind of oral motor delay).

If you want to talk about speech challenges, ADHD or Autism, this just might be the place for you. Each day we wake to a developmentally delayed four-year-old struggling with so many behaviors that are the result of his diagnoses. There are some ways in which Matthew is developing on track, and we could list those ways for you. But the identity of Special Needs Family seems to fit for us right now, and since this is our current reality and our current struggle, this is what I find myself thinking about regularly.

We’re still “Holding On For the Ride” (this blog’s title) at our house, so nothing has changed, but everything has changed too. This kiddo came to us through adoption, but it doesn’t really matter HOW he came. What matters is that he’s our kid—to love and care for, and to advocate for.  And like we do with all our children, we are constantly refining our parenting and our rhythms so that we can help him grow and help the rest of us live fully and grow too.

So please keep swinging by “Hold on For the Ride.” Your presence and interest means a lot to me. We may not be in the thick of cleft lip and palate repairs, but I still give you the same pledge I’ve always given: to write and share with honesty and authenticity.

You won’t get anything less from me, no matter how things change here at our house.

The Narrow Ridge

Recently I was having a conversation with a close friend about the many challenges we experience parenting Matthew. As I’ve said before on this blog, most of what is hard about Matthew these days has nothing to do with his adoption and everything to do with his delays and special needs, which we are still only beginning to uncover (at least that’s how it feels).

We had a lovely Christmas break for the first week, but the second week, we noticed that Matthew was getting a little discombobulated. I’m not sure if I have written this before, but after a terrible trial with Ritalin last October, we switched to Adderall and had great success for a couple months helping Matthew be more focused and less impulsive. In early December, at a follow up appointment with our neurodevelopmental pediatrician, she urged us to move up his dosage of Adderall a small amount, with hopes that he’d have even more relief from some of his impulsive and hyperactive behavior.

So we did, right before the start of break. Well, the first week we noticed he was more sleepy and lethargic, but eventually as the meds seemed to take hold of him more, he started showing signs of aggression, increased tics, and a return to the level of impulsivity he had formerly seen.

For a few days at least, both Aaron and I thought his changes in behavior were due mostly to the changes in routine—ie. he wasn’t going to preschool, and the holidays had changed our family schedule in significant ways.

However, early last week as we returned to the routine, his behaviors continued to escalate. The hardest thing we’ve been dealing with is his increased aggression, which is saddening to me and also makes me very empathetic towards him.

Finally late last week I scheduled an urgent care appointment with our family pediatrician, who agreed with me that something neurological was going on for Matthew—and so now we are in the midst of shifting his meds, paying more attention to his environment, and trying to enact some positive changes so that all the negative behaviors go away and we can once again enjoy our sweet boy.

So back to this conversation I was having with a friend. Recently I have found a metaphor that is helpful to me in thinking about parenting Matthew: With our first two kiddos, who grew in my body and were with us from the moment they arrived in the world, parenting feels like a wide path. At the edges of each path is a steep decline and rocky ground, but as long as we stay on the path, we do fine. If we get too far to the side and start falling off the edge, we have to work hard to correct our direction to get back on the path. But in general, the path is wide and gracious.

With Matthew, sometimes I feel like we are walking a narrow ridge—if we keep our feet straight ahead of us, one in front of the other, the path is straight and we can manage. But one misstep to the left or right, and we are slipping down a steep, rocky mountainside. And the amount of effort it takes to get back to the narrow ridge is no small feat sometimes.

The good news about this metaphor—and its translation into our real, day-to-day lives, is that it is possible to find a path with Matthew where we can exist in relative peace and harmony. Every single day (when things are going well) is not an arduous climb through perilous terrain. But it also reminds me that when we do slip down from the narrow ridge (often through no fault of our own), the climb back up is challenging and takes a great deal of energy.

If you are a praying person, we would greatly appreciate your prayers in this season. Things are a little bit better with Matthew than they were last week, but he’s still showing a lot of aggression and impulsivity—so much that his teachers and others who care for him each day are sharing with us about it. We are grateful for the many folks in our community and family who help care for our boy. He’s lovely and wonderful, but right now he’s also exhausting.

And I’m pretty sure life is a little exhausting for him right now too as he’s trying to navigate a body that doesn’t always cooperate and try to live in a world where he has very little skills in communication. Poor guy.

But we carry on, knowing that parenting this little human being is part of our calling and purpose in life, and that although we take two steps forward and then one backward, those forward steps are SO important in helping Matthew learn, grow, and move toward adulthood.

Parenting a Non-Verbal Child

On the heels of a wonderful birthday for Matthew yesterday, I should be glowing. But then again today it was back to real life, and the day ended with Matthew having a melt down and being put to bed by his dad. Real life at our house for sure.

One of the challenges of parenting a mostly non-verbal child like Matthew is that both Aaron and I have to work very hard to simply discern what our boy needs. I realize that this isn’t much different from what most parents deal with, but Matthew has been home over 2 ½ years how, and things haven’t gotten much better. In fact, in many ways they’ve gotten worse. And we can’t rely on the typical development of a healthy child in terms of how many more months it might be hard. That’s part of parenting a child with very unknown special needs.

Tonight I gave Matthew a bath and then asked his big sister to keep watch over him so I could go upstairs and get his room cleaned up and his pajamas ready for him. Under his sister’s watch, Matthew pooped in the bathtub. My husband rushed in and cleaned everything up, and then I stepped in to finish bath time. For some reason, Matthew was VERY upset when I took him out of the bath. Reflecting back, I think he was frustrated at my quick pace, as he loves to watch all the water go down the drain. Bu the doesn’t have words to tell me that, so I took him out and started drying him off, and he became inconsolably frustrated—tears, swipes towards my face, and loud wailing.

I tried to calm him down and get him in his pajamas, but he continued his crying and batting his hand toward my face . . . so I put him down, thinking he needed me space from me, but he started to cry even harder and grabbed me to pick him up.

Thank goodness for Aaron, who stepped in kindly and took Matthew. I was planning to read him one of his new birthday books, but when I reached to take him again, he shoved me away and clung to Aaron. I guess that was as clear of a message as any. At that point I was in tears—probably not doing my finest parenting, clearly—and so I let Aaron take him up and put him to bed.

Later, once I know he’s fast asleep, I’ll creep up to the attic and lay my body beside his. I’ll  cover him with kisses and smell his Matthew smell, and by morning everything will be better.

But it’s frustrating for a mama sometimes.

There’s so much we learn about people when they can tell us what they need. Clearly Matthew needed something specific tonight, even though he was tired and grumpy, but had I done a better job of being in tune to his needs I truly believe the end to his evening would have been better than it was.

I don’t want to misrepresent life with Matthew—it isn’t always this hard. But sometimes it is, and no matter how hard we try, no matter how much heart and love and sensitivity we put into our parenting, it ends in tears and shambles.

One thing I will say for my boy: by tomorrow he’ll have forgotten about tonight and be back to his normal self, and he’ll likely LIKE his mama again.  I can only hope for that, and be grateful for it when it happens.

But tonight as I sit here on the couch in a quiet living room, reflecting on this evening’s events, I also feel poignantly the extra challenge that we feel parenting a child who is not verbal—and I worry that he may never talk in a way that will express all that he’s feeling, all the while holding tenderly a hope that he will.