Indulge me in some REAL TALK.
Our sweet Faify girl was born three months premature. She spent the first five months of her life in the hospital – growing, fighting for her life, tethered to cords and tubes and machines that helped her do both. Three weeks after her birth, she developed Necrotizing Enterocolitis (NEC), and lost over half of her small bowel and a tenth of her colon, leaving her with Short Bowel Syndrome – a condition that makes her susceptible to dehydration, malabsorption, and malnutrition. She has several glorious scars on her torso from multiple life-saving surgeries, all telling the story of the fighter she’s always been.
It wasn’t the a typical start to life by any stretch of the imagination. The sounds and interactions and experiences of hospital life simply aren’t natural, no matter how much kangaroo care we exposed her to, no matter how many days therapists visited her to assist with her development, no matter how many hours we spent holding and rocking and talking to her. It wasn’t home and her care largely relied on the limitations set forth by her fragility, orders from her doctors, and intensive care protocol. Even though she had the absolutely best medical care around, you simply cannot make up for the last thirteen weeks that she was supposed to be in-utero growing and developing as a baby should, nor the unnatural environment of hospital life.
Once she was released home, she was still not a “normal” baby. She had a central line for IV nutrition and a g-tube for nutritional purposes, too. We had to cart around an IV pole in our home that strung her TPN, lipids, and enteral bags full of very expensive formula wherever she went. If we went out in public – which was rare those first few months since she was extremely sensitive to germs – we toted it all around in an old Vera Bradley bag. We had to do sterile dressing changes on her tiny little chest, replace her Mickey button, flush her lines, run her feeding tube, and set up her pumps around the clock. It was intense.
She had several subsequent hospital stays during the first 2.5 years of life. All were set-backs, both physically and developmentally and nutritionally. (Pic below is of her escaping the ICU for a room on the GastroIntestinal floor until she was well enough to go home. August 2015)
At almost-five, Faith is deemed delayed across the board. She receives speech therapies, occupational therapies, and physical therapies on a regular basis to help her “catch up” to the expectations of a typically developing child and man, oh man, has our little girl exceeded our expectations. But, she’s not 100% caught up, though Brandon and I truly believe she will be on her own time. Faith gets to set that course, though, and we’re just here to guide, support, and teach her along the way.
She should be in her final pre-k year right now, heading to kindergarten next fall – the fall of 2019. She should also probably be in public preschool right now, for which she’d qualify no doubt. However, here’s the deal. I’m a teacher. And, I know the minute she’s enters the public preschool in our state, her educational path will be set (i.e. public preschool now, kindergarten next year). Simply put, she won’t be ready. She needs one more year to play catch up and I am SO OKAY with that. I already feel like childhood is a rush and that, as her parent, I can push the breaks when it comes to her education and the knowledge of the beginning of her life. Because one more year to prepare, one more year to grow and mature, one more year of support is absolutely NOTHING in the grand scheme of life, but it could be hugely helpful for her academic trajectory.
Currently, Faith is in the 4s class at a private preschool, 3 days a week (she did 2 days a week last year). Next year, I would like her to do 5 days of pre-k or kindergarten at a private school. She will continue her therapies through our Children’s Hospital and will hopefully qualify for drop-in speech services in our county so that she will enter kindergarten with an IEP already in place.
I am very curious what other parents of kiddos with special needs have done as far as entering school goes. Did you do public preschool? Did you hold your kiddo back on your own so they’d enter kindergarten later? Sent your kiddo before he/she was ready? Do you have knowledge to share regarding your experience that might help me with mine? Pros? Cons? I would truly love to hear! Feel free to leave me a comment with advice, support, considerations I should keep in mind or to share your own experience.