This week I have been reminded time and time again about the faithfulness of God. Oftentimes these reminders happen in the dramatic seasons of our life. But I am starting to recognize that the reminders of His faithfulness in the slow and mundane parts of our life hit a different way.

Jake had a rare opportunity to go out of town this week with a friend, which is always a needed break and blessing. This carried a measure of guilt for him but we both recognize the need for small breaks. We don’t get to take many family trips together for several reasons, one of which being the time and finances we would use for a family trip is usually spent on our annual summer surgery trips for the boys each year. Levi has to spend a week in Cincinnati for his surgeries each summerand Malachi spends time at Vanderbilt. We add in “extras” to these medical trips to make them more fun and a little less medically focused for the boys and count them as a vacation. We also take the youth to camp each summer, blocking out another week and money towards a rental house for the boys and I. Vacations for fun tend to fall down on the priorities list and then we usually talk ourselves out of them due to the complex travel arrangements that we have to make.

So when Jake’s friend invited him on a trip I heavily encouraged him to take the opportunity! And with much hesitation he agreed. The boys and I cleared the calendar of all extras outside of our regular therapies and appointments and focused on taking each day at a time. Sometimes I bite off more than I can chew, and with Levi’s new school arrangements I was afraid that sleep would be even more rare.

There are so many factors to parenting these boys alone. Physically: it is a big ask of my body to lift and maneuver Malachi for several days straight. This week was no exception. This morning I noticed my hands quivering with physical exhaustion. Mentally: when I am unable to have a defined “break” my medical mind starts to struggle. Dosing for medications, medication schedules, feed times, charging feeding pumps, ordering supplies, and filling prescriptions. It really is a full time job caring for one medically complex child, let alone two. Levi’s seizure medication is in short supply so we had to locate a pharmacy that could get some for us…I had half a dose left in the bottle when we finally got our hands on a refill. Self-Care: this becomes an add if and when I can sneak in a shower or a nap. We don’t like to leave Malachi unattended due to his seizures but dragging him around the house with me is a challenge. And I don’t dare take a nap with an awake Levi in the house haha! He is just too…creative.

We know all of these things, so leading into the week I formulated a plan and a schedule to try to preserve as much as possible.

Each morning we dropped Levi off at school and when we came back home I put Malachi in his comfy chair in the living room. And every single morning, like a true gift from the Lord, he fell asleep for at least an hour. The first morning I couldn’t believe it. Malachi will sometimes try to take a nap, but every single time he naps he wakes up a few minutes later with a very aggressive seizure. But this week he took a nap every morning while Levi was at school and had zero aggressive seizures. He would wake up smiling and ready for the day. Malachi is almost 10 years old, and so this precious gift of another hour of sleep had to be orchestrated by God. I cashed in on the opportunity, sleeping on the coach next to him and holding his hand in case he went into his aggressive seizures.

Around lunchtime we would pick Levi up, listen to the adventures from his day, and head back to the house where Levi would crash and nap for at least an hour. Y’all. I couldn’t believe that the blessings just kept coming. I was able to accomplish so many things this week! A week that I had described as a survival week turned into one of the most productive ones in years.

I can’t tell you how many times I smiled and thanked the Lord. Each tiny, seemingly insignificant blessing felt like another hug from God.

Now don’t let me fool you- it was a challenging week. But when challenging weeks have God moments mixed in they just don’t seem so bad. Jake came home late Saturday evening and it has been so refreshing having the team back together again. We function so much better together!

Levi is still thoroughly enjoying school. I know I mentioned already that he is a sponge, but his memory is unbelievable. 7 days into school and he could fully recite the pledge of allegiance to the flag and the the Bible. I was so shocked when he just started reciting it one afternoon!

There are several reasons that we placed him in this specific school but one of the biggest ones was to see if he is ready and capable of handling kindergarten next year. Levi has lots of complexities but in so many ways he is very typical. So our hope is that he is able to remain in the regular education setting with supports in place if they are needed. But we also recognize that there are many unknowns with Levi’s brain and the older he gets the more we see the damaged areas affecting different parts of his body. He is losing vision in his eye due to this brain damage, he has cerebral palsy in his ankles and core, and he has some fine motor limitations. We needed to find a school to partner with that was willing to go on this journey with us and not be quick to categorize or label Levi.

Ugh. I feel a rant coming on. I didn’t intend to do this, so feel free to fact check me but this is a quick education of a dark corner of special education.

I was as a special education teacher before I had Malachi and there are a lot of unethical things in many school systems. In my own experience in Georgia I have overheard directors mentioning that we need to have a child evaluated for another specific disability so we can categorize them as “Multiple Disabilities” and potentially change their services or setting to a self contained classroom which collects more more federal funding for the school system. This is not a child centered approach.

When you incentivize by linking funding to disability categories/settings it leads to over-identification and it has potential to override what the student’s actual needs are. It also encourages a more restrictive environment for the student rather than letting their needs drive the decisions. Let me do a disclaimer here and explain that not all school systems have this unethical mindset! But it does exists in the public school world and it is important that you be aware of it if you have a child with extra needs.

Each state has a funding formula for exceptional students. For example, in Tennessee the base amount of federal funding per student in a public school is $6,860. With each additional need for a particular student that number increases. This extra money is assigned for special education for the county but doesn’t have to be used specifically for him within that special education program.

This was taken from an article I found online to help you understand the potential. Here is the link to the article if you want to read it in its entirety: https://www.tennessean.com/story/news/education/2022/03/14/disability-advocates-new-tennessee-school-funding-formula-negative-impact/7035362001/

The current formula proposal allocates additional percentages of funding on top of a base funding of $6,860 per pupil for each of ten unique learning needs,including:

• 15% for students with disabilities who receive consultations or direct services that equal less than one hour a week
• 20% for students with disabilities who receive less than four hours of direct services a week, or for students with characteristics of dyslexia or for English language learners in Tier 1
• 40% for students with disabilities who receive direct services for less than nine hours a week
• 60% for English language learners in Tier 2
• 70% for English language learners in Tier 3
• 75% for students with disabilities who receive direct services for up to 14 hours a week
• 80% for students with disabilities who receive up to 23 hours a week of direct services
• 100% for students with disabilities who need an aide or paraprofessional for at least four hours a day
• 125% for students who receive direct services for 23 hours or more a week or who are placed in a self-contained classroom or environment
• 150% for students with disabilities who are placed in residential services or are hospitali or homebound

Federal law mandates that each child with exceptional needs should be placed in their “Least Restrictive Environment” with proper supports and too often that is not done, for convenience sake or to preserve funding that will need to be paid for the extra support personnel in the general education classroom.

For reference, (if the article above is correct and the proposal was accepted as is) Malachi falls in to the “self contained classroom” category, so the government would give the school system his base $6,860 (standard for every non-disabled student) + $8,575 due to his classroom environment. So in public schools a child like Malachi gets $15,435 per year towards his education. Again, this extra money is not directly used for Malachi alone but rather goes into the special education fund for the county.

Why is this important to know? When we originally started school with Malachi several years ago we asked about a paraprofessional for him, a one on one aide that could help him with all things. We were told by the previous director that Malachi was not medically complex enough to require that level of care and that they felt like the ratio in the classroom of student teacher was enough to adequately care for his needs. But in all reality, it was not. This funding is provided so kids like Malachi can get the extra services they need, including the staff to help make that happen. Please please please advocate for your child if you don’t feel like they are being supported in their educational setting.

Okay, rant over. Back to momma Leah.

We chose to place Levi in a private school environment that does not receive any funding for his exceptionalities. We wanted an unbiased, appropriately focused opinion of what he is capable of doing with the proper supports. We applied for a local grant that was able to pay his tuition for the remainder of the year, which was a surprise blessing.

This week his school sent home his ISP (Individualized Student Plan; very similar to the IEP system that public schools use). And on the front page is this sentence: “(School Name) recognizes that all individuals are ‘fearfully and wonderfully made’ by God (Psalm 139:14). With this in mind, (School Name) is committed to partnering with the home to develop the spiritual and academic growth of all students.”

And underneath that section: “This is not a legal document. It represents a good faith effort on the part of this team to develop a plan for this student, with the intent of helping him progress to the best of his ability within (School Name) environment.”

When I read this I was overcome with emotion. This is such a pure and unadulterated approach to special education. No motivation other than wanting to come alongside the child and help him succeed.

Reading this affirmed my decision to send him to this particular school. Both of my children are fearfully and wonderfully made. They are so perfectly unique. And I love watching them become exactly who God designed them to be.

Watching God carry our family this week in such a seamless way reminded over and over again about His faithfulness. It reminded me that I am seen and I am loved. And this awareness flavored my week in the most beautiful, satisfying way.

May we have eyes that look for God in the mundane moments as hard as we search for him in the fire-filled ones.

And just as a quick reminder, you will not see a post from me next week. I will be cutting back entries to every other week and I didn’t want you to worry that something was wrong.

Much love,

Leah