Homeschooling & Intellectual Disability

I recently described this blog to someone as focused on Montessori, homeschooling and special needs. I realized though that I rarely give a lot of background on the unique challenges we’re up against some days, ie the “special needs” components (though I know I have from time to time mentioned them). Consider this post a more in-depth background “about us” specifically about my oldest kiddo’s unique needs.

Josie

My firstborn daughter had a typical, healthy pregnancy and straight-forward delivery. She was born with 9 and 9 apgars, eleven years ago, and when we went upstairs to the postpartum floor, we never knew what was coming.

Josie was born with 22q Deletion Syndrome — the most common genetic syndrome you’ve never heard of (that’s the catch phrase); it was de novo (spontaneous with no known cause), and it certainly wasn’t even on our radar at the time. Hallmarks of her Digeorge Syndrome (a severe manifestation of 22q) are a combination of cleft palate, absent thymus, extremely low calcium levels and rare heart defects. Josie was born with all of these things (and more) because her 22nd chromosome is missing a bit of genetic material. Because we had no idea and due to her heart defect, she went into shock shortly following birth.

She was born with an interrupted aortic arch which means she lacked the part of her aorta that connects to the heart itself. If that sounds life-threatening, it is; it is virtually always fatal left untreated. As a newborn she had no pulses in her legs and had a very low body temperature. Luckily we were still in the hospital when her body began to shut down. Thanks to a well-timed pulse ox that showed impossibly low levels of oxygen saturation in her blood, she had her first diagnostic echocardiogram at a day old. In a whirlwind we were off to a Children’s hospital two hours away to stabilize her and prepare her for her first (of three so far) open heart surgeries.

As she was being transported, she suffered seizures. Possibly due to her low calcium levels but also because blood had not been circulating correctly, she suffered liver and lower intestinal damage, and I believe some neurological impairment at that time as well. I will never forget being told by a neonatologist to prepare myself that our one-day-old, first born may not survive — even so might be brain-damaged. It wasn’t until a couple of days later, her medical team was able to run the testing to confirm brain function.

With Josie’s syndrome, cognitive impairment and learning disabilities are common. Most IQs are in the low average range. Josie’s is slightly below that, so at age 6 we received another (of many) diagnoses — mild intellectual disability. We’ve confirmed this diagnosis with IQ testing at three different hospitals (including flying her to the opposite coast for testing with UC Davis). She’s had a lot of surgeries over the years for a range of anomalies. She’s a fighter — a really fierce and strong kid who works harder than anyone I know. We don’t ever take her for granted.

Because of her cleft palate and structural differences, as well as possible neuro-related muscle weakness, Josie has a severe speech disability. She also recently has been diagnosed with a visual processing impairment. Apparently, her eyes dilate at different speeds which implies neuro involvement as well. These are just some of the more acute challenges that affect us day to day.

Josie is overall a medically complex kid, but where in the beginning it was next to impossible to manage, now with time, experience and a great team of specialists, we’re managing life (I’d say) beautifully. I do occasionally get some pushback from a specialist here or there about whether we’re equipped to undertake her educational needs — but I feel like if I was adequate enough to keep her alive her first several rocky years of life, and I taught her to eat by mouth and fought for surgeries she needed — not to mention showering her with love and a majority of my mental energy and time, I believe I can homeschool her.

That’s why I work so hard anyway, to keep the naysayers at bay. But also I want to give her the best chance at a normal and fulfilling life, as long as we have the chance to do so; that’s my goal.

So when I talk about how my oldest child, who should technically be in middle school, still requires primary materials, and how we’ve exhausted those materials and need to branch out to non-Montessori methods and whichever non-traditional approach we’re taking around here (or on Instagram) — if you’ve ever wondered why — it’s because we’re up against a lot of unique challenges.

I write all this not in the least hoping for any kind of sympathy but rather, I hope, to encourage anyone who has a kid who’s different that they too can homeschool and homeschool how they choose. I want to showcase how beautifully the Montessori philosophy works for all kinds of abilities because it’s about following the child and their unique needs. I want you to know that I get burned out sometimes too, and there’s a lot going on behind the scenes that Instagram doesn’t capture. In choosing to homeschool, in putting forward all this effort and time, I hope to gift my oldest daughter with the ability to be as independent as possible someday.

“… the child’s individual liberty must be so guided that through his activity he may arrive at independence … the child who does not do, does not know how to do.” —The Montessori Method

So we do all we can do as best as we can do it. That’s us in a nutshell. 🙂