Therapy for Therapy

If you have ever tried to make plans with me during the week, I have probably said something to you along the lines of “We can meet up after therapy is over at ___.” Therapies of multiple kinds are a huge part of my week between appointments with each therapist and the daily practice of implementing their suggestions for Ellie’s development. This year we have seen many doctors and specialists dropping out of our regular rotation because Ellie has been blessed with great health and minimal need for medical interventions, but therapy is going stronger than ever. We are immensely grateful for the services we receive to help Ellie develop and grow to achieve her full potential. Each of her therapists have been with us for the majority of her life, and they are very special to us because of their invaluable investment in our precious girl.

At this time we are blessed to have weekly Physical Therapy (PT), Occupational Therapy (OT), and Speech Therapy (ST) through the state’s early intervention (EI) program. We have also begun outpatient PT at the Children’s Institute to supplement the lack of hands-on help we have had, particularly for practice walking with assistance. This has been a blessing as well – Ellie seems to be most highly motivated by new places and faces, so our best motivator is to find the other kids in the building hard at work in their own sessions!

Here are some fast facts on Early Intervention services for those unfamiliar with the program:

· EI follows a coaching model of therapy in which the parent or caregiver is active and engaged throughout the session, learning what the therapist is doing to challenge the child so that it can be practiced throughout the week.

· Children with developmental concerns ages birth through their third birthday can qualify for services.

· Therapy sessions are typically provided in the home at a time that works for the family. During the pandemic, however, services have largely been moved to virtual sessions dependent upon county regulations. Just recently some restrictions have been lifted in this area.

· EI is a state-funded program; in Pennsylvania, there is no cost to families – Medicaid picks up the bill, whether or not the child is covered by Medicaid.

· Parents and therapists collaborate to identify goals for the child and regularly reflect together on how the outcomes and methods can be adjusted to best meet the needs of the family.

· Many different agencies provide services through their therapists. If a particular therapist or agency does not meet a parent’s expectations, parents have the right to request a different therapy or agency (and we have done this).

We have participated in EI every single week for the past year and a half and can see incredible benefits from the therapists’ work with Ellie. Since I am not a trained therapist, I would never know on my own how to best challenge and support Ellie in her everyday activities. Sometimes the most subtle of cues to her body will instantly make a helpful change as she learns to stand or use a pincer grasp. As much as the therapists are phenomenal at working with Ellie during our weekly sessions, it is even more for me to learn how to best serve Ellie throughout the week since those hours add up to so much more than our hour-long therapy sessions.

If I’m honest, the world of therapy has been one of our greatest blessings as well as a chronic challenge for me. As any parent who has done this can tell you, kids are usually resistant to what a therapist or parent is trying to convince them to do. It’s therapeutic because it’s challenging, and Ellie is extremely typical in that she does not usually want to have to work hard or do something that isn't comfortable. In fact, she is gifted at finding shortcuts and compensating in less-than-ideal ways (i.e. cheating). And if that doesn’t work, she has become increasingly comfortable throwing a fit. We have learned that pushing through the crying is usually worthwhile and necessary for progress, but friend, it is draining.

With the dawn of Covid-19, Zoom therapy became the new normal. We no longer had two sets of hands for our sessions (usually one person would assist Ellie with her activity and the other would motivate her with a toy or game). Things that were easy to see in person regarding feeding, for instance, were much more difficult to see on a two-dimensional screen. I can’t speak highly enough of our therapists; they adapted incredibly well to these unforeseen circumstances. Therapy mediated by a laptop simply isn’t what’s best for babies and toddlers or anyone!. (If you missed the video featuring Ellie made by one of the agencies we work with, you can find it here. If nothing else it's a bit of a visual aid for teletherapy!)

I am so thankful to share with this update that our county recently reopened the option for therapy in the homes, and we were more than ready to see our therapists in person again. The past couple of weeks have been a breath of fresh air for me to share the load in encouraging Ellie, guiding her physically, and evaluating her progress without constantly adjusting our webcam or running for a charger because the laptop is dying.

To bring this down to earth a bit, here is what Ellie is working on in her various therapies:

PT (gross motor skills):

· Sit-to-stand transitions

· Pull-to-stand transitions

· Cruising surfaces

· Taking steps with the assistance of a walker

· Crawling up stairs

OT (fine motor skills):

· Purposeful play that is developmentally appropriate (ex: putting things “in,” stacking cups, etc.)

· Pincer grasp for holding things, self-feeding, etc.

· Feeding therapy – a fine balance of offering foods that are safe for Ellie (her chewing is not great), challenging her current comfort level with textures, and making sure she is getting the right balance of nutrients/amount of calories with the added challenge of avoiding constipation that is so common for people with low muscle tone.

Speech Therapy:

· Also focused on feeding with an emphasis on oral motor skills

· Learning signs for basic words

· Encouraging Ellie to make different verbal sounds

For many children, these skills are “caught” more than they are “taught.” That’s an amazing truth; God designed us to pick up on so much in the early years of our lives (and in a fallen world I will add, for better or worse! Kids will learn to “quack” and perhaps also to curse, depending upon what they are hearing in the home). Children with cognitive and developmental delays require much more help learning these things. For instance, we have been working on the “moo” sound for months and Ellie gets as far as “mmm” but hasn’t put the rest of the sound together yet. What I love about the therapeutic disciplines is that the experts know how to break something down as complex as speaking in sentences or walking across the room and focusing on a micro-skill that is appropriate for the person’s level of development. Over time, we build toward that goal. I don’t know how to teach Ellie how to walk, and some of my instincts such as holding her by her hands and encouraging her to move her feet have been discouraged by the therapists (she would likely become very dependent on hanging onto me). I can, however, take directives from our therapists and work on the next skill diligently with her until she reaches that goal.

I’ve joked about needing therapy for her therapy. It takes a lot of work and physical/emotional energy to do this well. At the same time it can be a little mindless to do the same things over and over and over again – therapy for me is the epitome of draining and mundane toil. It’s not because I can’t see the benefits, but it is very slow progress. The Risen Motherhood book has a chapter called “The Gospel and Our Mundane Moments,” which I have read numerous times for encouragement in this particular area.

Author Emily Jensen writes, “The story line of the Bible shows that ordinary people didn’t always know when God was using their mundane moments, common vocations, everyday relationships, faithful interactions, and continual prayers for his bigger plans and purposes… I trust that there is no mundane moment too small for God’s glory to shine through it… Our everyday moments might be ordinary, but when we accomplish them while displaying the fruit of the Spirit, they reflect an extraordinary Savior.”

I can’t explain why reading those words makes me weep. On the one hand I know that my patience is often limited and my joy lackluster in these kinds of moments (which are, realistically, almost all of my moments). I am sinful and weak, and I often live by the flesh instead of the Spirit. On the other hand, I have great faith that the Lord is using every hour of caring for my daughter to teach me even more than she is probably learning about what His glory really looks like. A wise friend recently reminded me that the way up is the way down, and these moments of therapy or frustrating meal times present me with hourly opportunities to “go forth and die.” This is the call of every believer in Jesus Christ; to lay down our lives for the sake of another just as Jesus laid down his life for us. I firmly believe that faithfulness in therapy is nothing close to a savior for Ellie, but it is my calling in this season to display the fruit of the Spirit in the tough moments of resistance, refusal, frustration, and weakness.

It is very important to remember how far Ellie has come when it feels like progress is extremely slow. Since I last wrote in May, Ellie began crawling like a maniac, feeding herself little bites of soft foods, making more babbling sounds, learning to put things "in," and has worked toward many other little skills. She is highly motivated to move and excels most in the gross motor category, but she is slowly moving forward in every area. Even more than that, she is extremely social and loves playing with the children at church or receiving attention from the adults in her life. She is truly such a joy, and her skills have no bearing on her worth or delightfulness. I need to remind myself often that while it is merciful and good to challenge her to be as strong and capable as possible, she is just as loved and precious if she never meets certain goals or milestones.

The Lord has been so good to us over these past two years. In light of Ellie's excitement about other people, we are excited to welcome another little light into our family in June! Christopher Edward Delposen III is beyond blessed to have our Ellie as his big sister, and we are praying that these siblings love one another deeply, from the heart. We have been blessed with a healthy pregnancy and even the Lord's gracious protection in the midst of a car accident, and we look forward to our son’s arrival in a few months.

Now that Ellie is two, there is increasing need for discipline – we covet your prayers for wisdom in this area as it is difficult to know how/if our approach deviates from how we would discipline a typical child. Ellie seems to understand much, even though her verbal output is very minimal, so for the most part we are not going overly easy on her because of delays. Even still, I struggle with this tension of challenging and disciplining her for her good while being sympathetic to her own challenges.

Thanks for reading this update – I hope it could be an informative glimpse into what our day-to-day with Ellie looks like. In sum: the Lord has been so good to us, and we will continue telling of his goodness in all circumstances. If you, like us, sometimes feel weary in the race you have been called to, consider these words from the book of Hebrews:

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.” Hebrews 12:1-3