Praise for Preschool!

"The Lord gives, and the Lord takes away. Blessed be the name of the Lord."

Job 1:21

Since I last wrote in this space, Ellie has seen some wonderful growth and transitions. When I think about where Ellie is now, I can't help but reflect on where we've been. This helps me to fully appreciate the magnitude of God's grace in her life, giving and taking away in his perfect wisdom at all times. This post will be review for some, but sometimes it is good to remember and tell stories of His faithfulness more than once.

(If you want to skip my long-winded recap, you can scroll down to some bullet points for the basic facts on preschool.)

Looking back, Ellie's first six months of life were highly formative for so many reasons. For the first few months, it was a fight for survival. Feeding was so difficult, which made weight gain very slow or nonexistent. At first the pediatrician essentially told us to just "try harder" with feedings (she didn't understand the massive efforts already underway - I'm confident there was no "trying harder" than what we were already doing). When we received the genetic disorder diagnosis, everyone understood much more fully why our family was struggling so profoundly just to feed our baby. God's grace abounded to us in so many ways at this fragile, utterly sleep-deprived time:

1. Supernatural comfort and peace in the midst of deep grief.

2. The love and encouragement of family and friends.

3. My dear friend Beth bringing dinner on diagnosis day (she immortalized chicken pot pie and chocolate chip cookies as the best comfort food imaginable for me).

4. Medication for reflux - more readily prescribed since kids with low muscle tone often struggle with reflux.

5. Our first therapist - THE feeding expert in Louisville (I'll refer to her as "S"). S is a hero in my book because she actually changed our life from our first session. She equipped me with skills and the right tools to help our tiny baby eat which no one else in our life could provide. Our time with her was brief, but her impact was tremendous and worth every penny and probably more.

Once we moved to Pittsburgh, at which point Ellie was four months old, the Alliance for Infants and Toddlers set us up with PT and OT for feeding. Our PT, "T," was another highly gifted therapist who could not have been more wonderful to work with over the course of almost three years. T's time with our family was much longer than S's, but her consistency with Ellie (even through a pandemic-mandated stretch of teletherapy) laid a foundation that continues to serve Ellie so well to this day. The original OT was not adding the same value, so I researched until I found the area feeding expert in our beloved "R," an SLP (speech language pathologist). This was not my first foray into advocacy for Ellie's best interests, but it taught me the necessity of constant evaluation of Ellie's services to optimize what's working well and cut or replace what is not. The Alliance does not typically approve speech therapy for an infant so young, but I was able to fight for an eventual approval. A few months later we added a wonderful OT per our SLP's recommendation. I have learned to discern the difference between average clinical therapy driven by protocols and obligation and excellent therapy driven by authentic care, patience, perseverance, ingenuity, and connection with the child. All three of these women were in our home for an hour each week giving Ellie the latter - and that is no small part of what has helped Ellie achieve various skills and also gain confidence and strength. In just six months of life, Ellie went from struggling to stay nourished to being well-fed and receiving therapy from three of the best therapists I've ever met.

Once all of this support was in place, I knew Ellie's third birthday would be a difficult day for me because it would mean an end to the services these women had been providing. On a child's third birthday, the Alliance no longer works with families who have children with developmental delays and a new organization takes control of their services. I could not help but cry when I said goodbye to Ellie's PT and OT after their last session with her because they are our greatest practical support system from week to week, and I know that excellent therapists are unicorns - saying goodbye is sad and painful. They have seen Ellie at her best AND at her worst, and they have been an encouragement to me personally as I learn how to be a mom and a secondary therapist (especially when they could not be physically present) to a daughter with significant delays. Thankfully we were able to maintain services with R, our SLP, for another nine months because she has a private practice and accepted our insurance, and that was a tremendous gift in light of what happened next.

As for PT and OT, as well as the newly added developmental therapy, the new program worked with me on an IEP (Individualized Education Program) and set up services to begin right after Ellie turned three. It is not my desire to smear the program or the therapists who worked with us, but I will say that the transition was very difficult for us. Not only were sessions half of the length of her old ones with frequent weeks off, but our therapists were also not adding value and challenging Ellie at the same caliber. One therapist in particular was more often than not late, cancelling, or rescheduling. The speech therapist was asking me to teach her sign language, so I quickly terminated that service and felt so grateful that we could still work with R, our old SLP. Since things were largely not progressing, I began supplementing more heavily with outpatient therapy at The Children's Institute, adding OT and maintaining PT. To summarize, much of this year has been characterized by less-than-satisfactory in-home therapy, waiting months for an opening for outpatient services, and wondering how the Lord would provide the help I knew Ellie (and I) needed to continue growing in strength and basic skills. We needed more than this program could offer us.

The new program for in-home therapy continued to ask if I was interested in preschool (it's more efficient for them to consolidate in this way), so I finally decided to learn more, thinking it would be for my knowledge in the future - perhaps a year out. It was never my plan or desire to send any of my kids to preschool at age 3, and actually we have historically desired to homeschool. I toured the default classroom located just down the road for us this summer, and once again I want to be respectful, but it was unequivocally a poor fit for Ellie, this year or any year. It was not encouraging to think about what school would look like in the future after this visit. However, another option remained - considered the "most restrictive" option, the most difficult to qualify for, and therefore a last resort apparently almost nobody in our school district even knows about or utilizes.

Once again, I agreed to tour this "approved private school" just to understand our options. In August I drove to the school and pulled into the parking lot already feeling doubtful. The director of the school welcomed me inside to give me a tour, and within minutes I was fighting back tears as my perspective completely shifted because I knew in my spirit that Ellie needed to be there. It could not have been a more different reaction to the other classroom; this was a place made for kids like Ellie. Everything from how the classroom is set up to what resources and staff support are available to the students made it so clear to me that Ellie would thrive there.

I called Chris on the way home weeping and unable to speak (he was highly concerned until I could finally speak words that these were happy tears), and after confirming through prayer I reached out to the school to request that we begin the enrollment process. It was an easy decision, but certainly an emotional one, too. Happiness and excitement abounded - I knew Ellie would love to be there. I also felt some grief, because without her genetic disorder she would not need such a specialized school to invest in her well-being. Some sadness surfaced as I considered that once school began, she wouldn't be with me all day every day anymore, and Christopher and I would miss her. A hint of fear occasionally creeps in, usually in the form of what if questions with scary answers, but those thoughts have been very fleeting and easily submitted to my trustworthy Lord. Overall, processing this transition was emotionally overwhelming at first but mostly we have just been filled with thanksgiving that this school exists and we can send her there.

Starting school was delayed by a few months because they were actually down a teacher and couldn't open her classroom yet. Finally we were able to have a round robin meeting in which Ellie got to be the center of attention with five therapists and teachers who observed and played with her, and Chris and I met with the director, social worker, and nurse to go over her entire history. We then had an IEP meeting to finalize her goals and on December 5 Ellie started school! Here are the typical questions people have asked about what school has been like for her:

• What school is she attending? I won't post it online but you can ask me directly and I'd be happy to share. The school is exclusively for children ages 3-8 who demonstrate developmental delays. Her classroom currently has five students, and six is the maximum. She has one teacher with special education credentials, a classroom assistant (whom I adore), and there are also floating classroom assistants. Additionally, the therapists are in and out of the classroom all day enhancing Ellie's daily activities as well as pulling her out for individual therapy weekly. It is roughly 20 minutes away from our house.

• How often/long is she there? School is Monday through Friday from 9:30-2:30.

• What does she do at school? Like typical preschools, the kids have circle time, individual desk time with the teacher (5 minutes max), specials like art, gym, library, sensory activities, focused therapy, free play, snack time and lunch (they engineered a special chair for her to have the perfect amount of support for eating and there is always someone there to help her with her utensils, etc.), a fifteen-minute rest time, regular diapering, etc. Their schedule keeps moving all throughout the day and she is so tired (in the best way) at the end of the day!

• How has Ellie adjusted? The adjustment could not have been smoother. As we expected, our little socialite absolutely loves the other children and her teachers and therapists. There is a communication binder that goes back and forth between me and the school each day and her notes always say how much she loved something they did that day (especially the ball pit in the gym and music therapy - no surprises there). Often at the end of the day it appears she has been a bit tearful, but everyone tells me that the only time she cries each day is at the end; it appears she doesn't want to leave! She is so happy to go to school every day and that has made handing her off each morning easy and delightful.

• What are some of Ellie's goals? We wrote goals to work toward improving and lengthening her attention to activities and tasks (teacher), ambulating from the car to the classroom with her walker (PT), increasing independence feeding with utensils (OT), and following one-step directions and making simple requests (Speech). The beautiful thing about such an integrated is program is that, as they explained it, "everyone is working on everyone else's goals regularly." They all work together so well to give Ellie many opportunities each day to grow in these extremely practical life skills.

• Are you driving her? Yes, for now. Our school district is supposed to provide transportation, but there is a major shortage of drivers. They are working on it but we have no idea if/when it will happen. For now they are reimbursing for the miles Ellie is in the car (so half of the driving, essentially). I'm very grateful for this to offset the gas for our minivan, but we are praying transportation will come through eventually as this will save Christopher and me two hours in the car each day and open up our day for other things. A plus side of all of the driving is that it has been a built-in opportunity for Scripture memory review. We would welcome your prayers for provision for transportation to eventually become an option.

• What does this dreamy preschool cost?! Actually no one has asked me this; everyone is too polite, but it was my biggest concern as we explored this option. The answer is that the school, even though it is private, is funded by the Department of Education similarly to our local school district, and there are also generous donors who give to the larger organization and make this accessible to the families who need it. This makes me so grateful and relieved to not bear the financial burden of tuition.

• What benefits have you seen so far? I planted this question too because I had to include somewhere that Ellie's willingness and ability to take 7-8 independent steps has recently exploded! She is walking everywhere at school using her walker and they have found very effective ways to motivate her to take steps all on her own. I see her shifting from preferring to crawl to wanting to walk longer distances with help or shorter distances by herself. This is something that I could not envision just a couple of months ago; it seemed like after years of crawling she might never want to try anything different, but that is just one way she is truly learning and growing through school. All of the feeding practice has also been such a blessing because I sometimes lack patience with the mess it creates, but they have a system that works so I am loving that as well.

After two full weeks of school, I can honestly say it has been such a providential, wonderful blessing to have found this opportunity. We appreciate it so fully in light of this year's struggles to secure the support we desired for sweet Ellie, and I'm thankful for my experience with both excellent and below average therapists so that I can know what will serve Ellie best. It is an absolute joy to watch her thrive and hear from her teachers that she has stolen their hearts and engages so joyfully. With tears in my eyes, I can only praise God for bringing us here and making a way. In taking away some very beloved therapists at the proper time, He has given us something even better - such comprehensive support that is both fun and effective. I took this photo for her first day of school, before she even knew what was really happening. The smile has only grown, and so has our gratitude for this new beginning.

One more blessing I want to mention is that this transition has lifted the burden of constantly evaluating Ellie's services and facilitating/assisting with therapy several times each week. Now I can focus on and enjoy a more important role.

I can just be Mom.

That feels like new territory almost four years into my motherhood journey. While I will certainly be working with Ellie at home on her goals in informal and playful ways, I feel less pressure to be the main person challenging her in every area, often to the point of resistance. She's getting a lot of that at school, which enables home to be a place where she can just be loved and free to be herself. I'm excited to engage with her more as just my daughter. These dynamics have been true all along, but it is a relief for therapy to be more removed from me and our home.

Thank you for sharing in our joy and praying for Ellie; we are so thankful to report that she is thriving by God's generous grace. I pray that you, also, may trace God's faithfulness in your own life as He gives and takes away in perfect wisdom. In every season we bless His name. Grace and peace, dear friends, and have a Merry Christmas!