What I want my Early Childhood teacher to know about my preemie toddler...

I was asked to talk to a class of undergraduates today.  All of them are aspiring to be early childhood educators. The class works through the development of a child, starting with prenatal and going into baby and up to age eight. Today was the childbirth class. I was asked to come and give a unique perspective to childbirth - what is it like to have a micropreemie? What is it like to throw your birth plan COMPLETELY out the window?

The talk went great, and after talking about early labor, a traumatic childbirth, the choice we'd had to make, and summarizing a five month NICU stay in under ten minutes, I was grateful to have a chance to go into application -- what does having a micropreemie mean for them in early childhood?  What did they miss out on in their third trimester and how does that impact them? What should the teachers of former preemies know? (Are they ever "former" preemies?  That's a question I didn't ask, but I keep wondering.)

As part of my background research for tonight's talk, I asked a bunch of NICU parents for their insights. I'm posting their responses anonymously here. There's a chance that some of the students I talked to tonight will check out this blog. Hopefully this will add to what I said.

I broke the take-away message from the talk into three themes. Here's a brief overview of those themes with quotes from parents to support my thoughts.

1. Health is still an issue for toddler and grade school kids who were preemies. (My hubby was a preemie and as a 30 year old he STILL has lung issues that are severe enough we can't have animals or many carpets in our house.) We are germ-conscious for a reason. Learn about RSV and know that your cold can hospitalize our child.  Help protect these kids with proper hygiene.  Hand sanitizer, hand washing, and cleaning of toys, etc. is essential for us, for a reason.  (I was a little shocked that no one in the room knew what RSV was. Then I realized that I hadn't before I'd had a preemie either.)

Here's what other parents said when I asked what they wanted these students to know:

• "I wish they'd get their flu shots, and send sick kids home."
• "We are not just paranoid about germs. We are trying to save our child from a hospital stay."
• "Sickness in other kids maybe mild and just a "runny nose" but that runny nose may end up hospitalizing my child. Please keep that in mind when I am ranting and raving about idiots that send their kids to school sick. And, remember that when the next week my child misses all 5 days of school and comes back with neb meds and on a steroid high."
• "Sickness happens often.... their lungs are not that of most kids their age. Missing school is going to happen. Its not that I'm lazy, or don't want them there, but they sometimes need extra time to heal!"

2. Keep lines of communication open and get to know OUR child. We are good advocates for our kids. We learned to be when they were only days old, and have had many many months of practice with specialists ever since. We know a lot about them and learned a lot about the medical and developmental world through them. Talk to us a lot.  Tell us what your concerns are, but more importantly also hear what we know. DON'T try to think you know our child because you once knew a different preemie.  The paths these kids take are very varied.

See?:

• "I think the most important thing to stress is communication! Teachers need to know that there is nothing a parent welcomes more than feedback on their child. I once had a teacher afraid to speak to me about their concerns over my sons reading level, for fear that I might be disappointed. Little did that teacher know that I had spent the entire year previously fighting with my child's teacher trying to get him to recognize the issues I was seeing. The best thing a teacher can do is start an open dialogue early."
• "I recommend that teachers do not tell parents about preemies they've met who have had no lingering problems. Outcomes vary so much that the title 'preemie' is just the beginning of the story... Children who struggle early on may be able to push through only to struggle again, repeatedly, when they are older. My own research led me to keep my 23-wk twins in Kindergarten for an extra year, despite my children's preschool teachers stating they were doing just fine. Educators can help parents be aware of this option and help remove the stigma of holding children back."
• "I'm an intervention specialist myself. What educators need to know is they don't know. They might have all the education in the world but no one can possibly understand what we have been through but us."
• "LISTEN! Preemie moms watch their babies like hawks. We know when their heart rate and o2 aren't right, which milestones they are struggling with, when something is wrong because we know the dangers of prematurity and look for the signs and symptoms that anything is wrong. If a parent comes to you and says something isn't right with my child LISTEN! We are seeing something you're not. Being "delayed but not delayed enough for intervention" IS NOT ACCEPTABLE for a preemie! They have been delayed since birth....intervene immediately if a parent has concerns."

3. Development and sensory issues. I talked about adjusted versus actual age. I talked about how the "adjusted" age sometimes (often) lasts past age two, even if we're not officially adjusting any more.  Also, our kids may not see the world the way you think they should. My son may be hyposensitive, others are hypersensitive. Reflexes aren't as you think they should be. Get to know how they work, be sensitive to the fact that they may process things differently.  Like any good teacher does with ANY child (and like I already said with #2) get to know each child well.

• "Our kids don't take the straight line with development, usually they are all over the place. Sometimes ahead in some areas and behind in others. That many have sensory issues that can mirror other problems, but they aren't. They may need more quiet, more time,and more help than some others. They didn't get the quiet of the womb, they didn't get the pressure on their joints in the womb, so this and many other things can impact learning and attention." 
• "I would like my educators to know that micropreemies are at high risk for learning disabilities, social issues, sensory.....and early intervention practices should not stop when children reach school age level. My daughter, a 23 weeker has to work extra hard just to be average. She is in a great school but I still struggle to get her the services she needs!"
• "The focus with all kids needs to go back to social/emotional instead of just ABC's/123's, especially with preemies. My 23 weeker is actually really smart, but socially still struggles. She is now 9 1/2 and I think that if she had better experiences in child care, we might have overcome some of our sensory and social challenges. We had lots of negative judgement from teachers and directors."
• "I love my 22 weekers preschool teacher..However,I do wish I could help her understand Processing Integration Disorder better. Sometimes she can get overwhelmed and nobody gets it."
• "LOVE LOVED LOVE our preschool teachers but I wish they were more sensitive to his sensory issues. they often let him get overwhelmed to the point of shut down and all it would take is to take him out of class for a few minutes to let him chill quietly to avoid his shut down."
• "I'm an Early Childhood Educator and a mom to two preemies. I think the most important thing for all teachers to remember is that no two children develop at the same rate. We are expected to have all students reach the same point at the same time and that isn't real life, especially with children who are already developmentally behind their classmates due to prematurity."
• "Sometimes their prematurity can still be a impact even after they quit adjusting for it."

And then there's other things that I touched on but didn't highlight.

4. Size/weight. Two notes: One, many preemies are very small. They had to work hard that third trimester, they couldn't focus on growing like their in-utero peers.  Two, size does NOT equal strength. Just because a preemie ISN'T small any more and looks more like their peers doesn't mean they're healthy. Their lungs still may suffer and they may still have other preemie issues.  Being a preemie is about a lot more than just being small.

• "One thing, her father and I get annoyed with is people's insensitivity in regards to her size, we are constantly being told how tiny she is. We have even been told that we are lying about her age, so please stress the importance of not remarking on size and scars."
• "Even though she might look 'typical' she is not typical and her lungs will still slow her down."

Basic understanding of prematurity is important. I never got in to quarantine tonight. I didn't talk about why he wasn't in daycare like we thought he'd be, and why I hired nannies for in-home care for the first year of his life. I never got a chance to say how lucky my son was because he didn't  have a trach or oxygen, and that they shouldn't think of him as a normal case. Truth is, there IS no "normal case." There is so much else out there to learn.

I told them that the things most babies get naturally Jonathan had to learn through hours and hours of PT and OT. I told them about his airplane arms and how that had hindered him from exploring the world around him. I didn't tell them about how I put him in a sandbox early so that he'd learn to tolerate the feeling of sand -- because otherwise he may never ever be able to stand it. (See the last two pictures in this post for him in sand and him with arms out wide.) I didn't tell them that it took him eleven months to be able to take all his nutrition by mouth without a feeding tube -- and that we think that's a HUGE success.

I didn't tell them so much.

But these students, when they are teachers, they will learn like I learned. They will find themselves working with a kid who doesn't fit their mold, and they will learn to expand their horizons.