an end and a beginning

By Matt & Allie

The last few months have been very eventful for our family. In December, we welcomed baby girl Laney and she is doing very well. Noah adores his little sister and his favorite thing to do is hold her. On the other hand, Peter is less sure of the baby. The month following Laney's arrival was especially challenging for Peter. He developed intense separation anxiety and an extreme preference for Matt following our brief (30 hour) hospital stay for the birth. This seems to have finally calmed down for the most part, but it still pops up on occasion. Petey has also been aggressive toward the baby a few times, lashing out to scratch her or try to flip her bouncy seat with her in it, so we have to be on high alert all the time. Whether this is out of jealousy, malicious intent or just the result of a child without impulse control who doesn't understand gentle touch is unclear. But it is still a serious concern.

It has also been frustrating when well-meaning people, either implicitly or explicitly, refer to Laney as a blessing we've received because of Petey. Make no mistake, Laney is a tremendous blessing to our family. But we are uncomfortable with the idea that we were blessed with her because of Petey, because that means Petey was the trial to be endured in order to be blessed. Petey is our son--he is not a trial or tribulation to be endured. Rather, he is a blessing in his own right, and even if God did bless us with Laney because of our faithfulness in following His call to adopt, we still do not want to think about either of them that way.

The other significant event recently was finally receiving the results of extensive genetic testing for Peter after 4+ months of waiting. Unfortunately, the results were devastating. Peter has Claes-Jensen Syndrome (or medically speaking, X-Linked Intellectual Disability, Syndromic, Claes-Jensen Type) a genetic defect/mutation of the KDM5C gene that is marked by, among other things, severe intellectual disability (formerly known as "mental retardation"). For context, and while there are many outliers on the spectrum, Downs Syndrome is associated with "mild to moderate" intellectual deficit. Claes-Jensen Syndrome also causes speech impairment, problems with adaptive behavior and aggressive behavior, microcephaly, awkward gait with slowly progressive spastic paraplegia, seizures, and many more minor symptoms such as small stature, high and narrow palate, etc. Given the hitch in Petey's giddy-up, paraplegia is a very possible eventual outcome for him. There are many non-specific symptoms Petey displays that in a vacuum could have meant something or nothing, but looking at them through the lens of Claes-Jensen leaves no doubt as to the accuracy of the diagnosis.

We have no concrete answers for Petey's progression or future because this syndrome is so rarely diagnosed. While the gene mutation may not be rare, the ability to test for it is new, so not many people have been diagnosed as of yet. Previously, children with this condition would just be classified as intellectually disabled. So, there is little to study and little to compare. In fact, in the one study we did find, citings were not for percentages of this particular population, but for specific individuals. This is the first case Petey's geneticist has ever had of Claes-Jensen Syndrome and we are learning as we go, since Petey is a case study himself.

This diagnosis is in many ways an end. An end to hope that Petey will ever be independent in any way. An end to hope that he will progress cognitively in any significant way, and maybe even the hope that he will ever talk. But it is also a beginning. A beginning of reasonable expectations for his future. A beginning of real plans to make sure he will always be taken care of. We have also discovered reservoirs of patience within ourselves that we never knew we had – patience that only God could produce in us.

We've shared before that life with Petey is difficult. There are really two Peteys: Medicated and Unmedicated. Sweet Pete and the Tasmanian devil. When Petey is medicated during the day, he is usually as sweet and docile as can be. But when his meds wear off in the late afternoon, watch out! It's sad, but so many days we find ourselves just living for 6 pm so we can start his bedtime routine because there are just so many things that are on hold until Petey is in bed.

While Petey spends much of his time either in his own little world or rampaging, he has rare moments of clarity when it seems his cloud of confusion lifts and we see the real Petey that is lost in there due to the ugliness of Claes-Jensen Syndrome and its effects on his mind. For example, one morning recently, he sat on Allie's lap while she read him “If You Give a Mouse a Cookie.” He was interested in the pictures, turned all the pages when prompted, and even did the signs for words and concepts he knows, like eat, drink and wash. Another morning, he colored with Allie and scribbled with five different color markers before losing focus, which is absolutely amazing considering his minuscule attention span. And one morning this week, he was watching Allie change Laney. She asked him to get an outfit and he opened the correct drawer and brought pajamas. Then she asked him to put the other outfit in the laundry basket in the closet. He opened the closet door, placed the outfit in the basket, and closed the door. While Petey's future looks grim (at five years of age, he seems to have plateaued in the 18 months to 2 year range developmentally), we remember the phrase “But God.” With God, all things are possible.

There is also one more end here: the end of this blog. It has been a great means of sharing our journey with you and we hope we've been transparent about the good and bad times. We will leave the blog up in hopes that it may help others considering this journey, as many other blogs helped us. But now that we have a diagnosis and a clearer picture of the future, we feel that it is important to make this our last post.

As we said before, this news was devastating and we are grieving, and the grief washes over us in waves after periods of peace. Thank you for following our journey. Thank you for laughing, crying and praying with us. We appreciate your prayers now more than ever.

Thank you,

Matt and Allie

The New Normal

Hello friends,

Matt here.  It's been a long time since our last post.  There are many reasons for the gap between posts, including lack of time.  But perhaps the biggest reason we haven't written in so long is that we didn't know what to write.  As we have continued to search for diagnoses, medications, and therapies to help sweet Pete, we didn't want him to become his special needs by continuing to write about his challenges.

So, here's an update on life with Petey since our last post in July 2016.  We have had appointments with his pediatrician, neurologist and neurosurgeon, and he had an MRI.  A few months ago we finally received a formal diagnosis:  microcephaly.  That is a scary word, especially if you're aware of the Zika epidemic which has seen the birth of many children with abnormally small heads which results in significant and potentially life-threatening complications.  Petey's microcephaly is classified as "moderate".  Children in the mild range typically suffer no ill effects and develop normally. Children in the severe range often suffer seizures, have impaired sight or hearing and, in the worst case scenario, basic life functions are threatened.  But the moderate range has a wide variety of outcomes and we don't yet know where Petey will end up.

He has regular occupational therapy which has helped develop his motor skills significantly, although he still has a long way to go.  We stopped speech therapy several months ago due to a lack of progress but will start again in May, in hopes that he has developed enough since then to try again. He can do a few baby signs, but his fine motor skills are so limited it is hard to differentiate between several signs beyond the obvious like "eat", "drink" and "dog".  Petey has been attending 2 morning-a-week preschool and we have been blessed with tremendously accommodating teachers.  But Petey will most likely be home with Allie next school year.  He won't be ready for 3-year-old preschool and there just aren't good special needs options available that are appropriate for Petey at this time.  In addition to speech, OT and possibly behavioral therapy, we will also schedule classes like gym and music to give him opportunities to socialize.

Perhaps the biggest challenge with Petey remains his ADHD.  He has been on medication for several months and that has had a positive effect on his behavior. But this particular med is likely not the long-term answer and we are not-so-patiently waiting for an April appointment with a developmental pediatrician. We hope that doctor will be able to prescribe different meds that better meet his needs.

As things stand now, when the meds are in effect, his attention span is okay. But when it wears off, watch out!  Frenzied may be the best word to describe him when he is unmedicated, typically first thing in the morning and again after 4:30 p.m.  He will grab anything and everything he can and dump whatever he can get his hands on.  He simply cannot focus on any one thing for longer than 2-3 seconds when he is not medicated.   We have to follow him and watch him like a hawk, or just give in and spend hours later cleaning the disaster area.  By far, the worst part is that when he gets frustrated he bangs his head on the closest surface.  Walls, doors, floors, concrete driveways, bathtubs, streets, chairs, tables...whatever he can reach.  It is extremely difficult to watch him hit his head before we can get to him.  We have learned to watch for the signs and to snatch him up and soothe him before he hits his head, but sometimes you just can't get there fast enough.

And yet, despite all of that, he is the sweetest and most gentle boy.  Some children with severe ADHD are prone to rages, but not Petey. He may be frantic and frenzied at times, but he never hits, bites or kicks.  He has never once lashed out at anyone else. He also has a great smile and the most infectious laugh.  He has a tremendous sense of empathy and will cry if another child cries first.  He also has a way of making people happy. Cashiers at the grocery store, people in line at the post office, friends at church...he just has a way of making people smile because he's so darn cute.

So, what does the future hold?  We don't know.  We desperately hope and pray that Petey will learn to talk, but we know that is not likely to happen in the near term.  We hope that the new doctor will be able to prescribe something better for Petey. Our pastor recently preached a very challenging message that really changed my perspective on a lot of things.  He talked about being thankful for everything, including the challenges, rather than only praying that God would get us through or take those challenges away (which is still okay to do, too!). By being thankful for the challenges, whatever they may be, it has helped me to focus on Petey as he is, not forever wishing for Petey the way I'd like him to be.  Nor consumed by bitterness and resentment for whatever (or whomever) happened to him before he came to us and that might have caused his issues. Or as Allie says, not to see him as a 4-year-old or a 1-year-old, but simply to see him as Petey, who we love dearly.

We used to think that if we just got Petey home, loved him, fed him well, and made sure that he had appropriate therapies and support, that he would catch up. We've seen many international adoptions where the children thrive when they return home with their forever family.  And maybe Petey will too, but we also now realize that it won't be as easy as we had hoped and that this, for at least right now, is the new normal.  What we hoped would just be a season of life may last far longer than that.

This might be our last blog post, it might not. Only time will tell.  But I wanted to share with you where we are and ask for your continued prayers for our beloved Petey.  Thanks for your love, prayers and support.

-Matt

Beach Week 2016

Thanks to the generosity of Matt's parents, we just spent a fun, beautiful and rejuvenating week at the beach with them, my sister-in-law, brother-in-law, and our four nieces and nephews. The cousins playing together just about non-stop and making lifelong memories together was beyond precious. 

In the spirit of keeping it real, the week was very challenging for Peter because he was out of his familiar home environment. He was happy and content in the pool for hours on end, but being inside was very difficult for him because of his nearly non-existent attention span and his food anxiety issues. We are blessed, however, with family who love our sweet boy unconditionally. 

This was our fifth annual beach vacation and each year we take a photo of the cousins sitting on the shore. It is interesting to see how much they've grown up each year. 

We love how much these two love each other.

Bubbles on the back deck

Noah explaining the Star Wars movie to Ozzie

Sweetness

Petey enjoying time with his Honey.

Petey being read a bedtime story

As opposed to last year, Petey really liked the sand and the ocean!

~Allie

Brother, Let Me Be Your Shelter

Every time I (Allie) hear the song "Brother" by NEEDTOBREATHE, I think of my boys and what a protective, proud, loving big brother Noah is to Petey. And how much Petey adores Noah, learns from him, and loves to be around him. It especially delights my heart when I hear Noah singing the song. It brings me great joy to know that they share such a strong brotherly bond.

Brother by NEEDTOBREATHE

Excerpt: 

...Like a bull chasing the matador is the man left to his own schemes

Everybody needs someone beside em' shining like a lighthouse from the sea

Brother let me be your shelter

Never leave you all alone

I can be the one you call

When you're low

Brother let me be your fortress

When the night winds are driving on

Be the one to light the way

Bring you home...

I ain't made for a rivalry, I could never take the world alone

I know that in my weakness I am stronger

It's your love that brings me home

Brother let me be your shelter

I'll never leave you all alone

I can be the one you call

When you're low

Brother let me be your fortress

When the night winds are driving on

Be the one to light the way

Bring you home...

Petey's Big Day!

Petey attended Sunday school! This may not seem like a big deal, but it is huge! For a year, we had been working up to this day, and two Sundays ago Petey surprised us by going into the classroom on his own and successfully staying through the entire class.

A year ago, just being at church around so many unfamiliar adults was too overwhelming for him, so for months and months Matt and I took turns going to church with Noah, while the other stayed home with Petey. Then, for a few weeks, we took turns taking him to a church nursery class that matched his developmental age at the time and staying with him for the duration of the service, only stepping out once or twice for a couple minutes to see how he would react. Worse than crying, he would go sit against a wall and mentally retreat. So, we stopped doing that. Then, for several weeks, we kept Petey in the sanctuary with us for the music/singing and took turns taking him into the lobby where we could listen to the sermon and watch Petey as he explored. 

Two weeks ago, I took Petey into the sanctuary to find seats and listen to the pre-service music while Matt checked Noah into his class. Petey was not having it, so I walked him out. Instead of just walking out to the lobby, he turned down the hallway to "kids church." I let him lead the way and followed along with him. He walked to the classroom we had experimented with, looked around, left, and continued down the hallway. He stopped at Noah's classroom and checked things out. Then, he turned down another corridor to more classrooms. At this point, the leader of the kids programs saw us and asked if I was going to put Petey in a class. I told her that I was going to let him decide. Smartly, she opened the door to a class of two-year-olds where she knew the teacher would be a wonderful match for him. Petey walked in on his own, explored, looked back at me, held my gaze for a moment, and then went off to explore and play some more. After I talked with the teacher for a while about Petey, I went back to the sanctuary and Petey stayed in Sunday school! Matt went to check on him (without Petey spotting him) half-way through the service and Petey was doing well. When we picked him up, he was sitting at a little table with the other children and I could tell that he was watching the other children to gauge what to do. He had successfully navigated an art project (with one on one assistance) about creation, playground time and snack time. I was so proud of him, I wanted to shout it from the mountain tops!

We knew that the next week would be the true test, though, of whether Petey would successfully repeat the experience, knowing what he was getting into. Again, he was a champ! Here is a photo I took of him going down a slide when I popped out to check on him (again, without him spotting me). 

This is a huge milestone, not only for what it is, but for what it forecasts -- we now think he is ready to start preschool next year and have enrolled him at the same preschool Noah attends. Petey will attend two mornings per week and will be in a two-year-old class, based on his abilities. We are hopeful that he will feel comfortable there because he is so familiar with the school. And we are hopeful that being in preschool with other classmates and peers will encourage him to talk, since he is still nonverbal. We are also extremely thankful and grateful to the director for working with us to meet Peter's educational needs! 

Here are some other pics of Petey enjoying the outdoors with us:

  

 

One Year Today!

One year ago today, we held Petey in our arms for the first time and we became a family of four. I will always remember how tiny he was, and it still brings tears to my eyes thinking about how confused, scared and sad he was because he didn't understand what was going on, except that he was being handed over to people he had never seen before, who looked very different than his caregivers, and who were speaking a language he didn't understand. But I will also always remember how shortly after he finally let me hold him at the orphanage, he decided to trust me - he snuggled into my arms, let me feed him a bottle, fell asleep in my arms out of pure emotional exhaustion, sat on my lap at a restaurant and let me spoon feed him, and slept best in the hotels if he was laying on me, clinging to me. It was such a very emotional time for all of us. I will never forget the relief I felt a couple days into our adventure, when he smiled when I tickled him, smiled at the sight of us, and humorously knew to smile for photos. When he began to smile, I knew he was happy, and that made my heart glad.

In most ways, it feels to me like Petey has been our son for his entire life. He is part of me. When we think back at our time in China, think about all that has happened since then, and look at the photos that tell our story, it is amazing to think it began just one year ago today.

Looking at Petey on Gotcha Day and looking at him today, it is amazing how much he has grown, in so many ways:

Baby in China to Big Boy at home:

I took the first photo the last weekend of May 2015 at a local farm where the kids like to play. I took the second photo this weekend. What a difference a year makes:

 

~Allie

One year (almost!)

It's hard to believe that it's been nearly a year since Peter became ours.  In some ways, it seems like he's been with us for much longer but in other ways it seems like just yesterday that we held him for the first time in Jinan.  As we approach the first anniversary of Gotcha Day, I've been thinking about what that day means and how we will celebrate it, both now and in the future.

We know adoptive families who treat Gotcha Day like a birthday, a true day of celebration.  And in many ways Gotcha Day is just like a birthday, the day that their adopted child has been reborn into their families.  But we know other families for whom Gotcha Day is a low key affair due the memories of grief, trauma and loss that are stirred by remembering the circumstances that brought these children into our lives.

I don't really know how we will celebrate Gotcha Day in the future, especially as Petey grows in awareness and starts to ask the questions that are sure to come, questions for which we have no answers.  But for now we are grateful that he is part of our family and we hope that he is as blessed by our family as we have been by him.

~Matt

Keeping the beat in music class