How My Kids’ Therapy Team Saved Me

My most recent blog post is at up on Preemie Babies 101: http://www.preemiebabies101.com/2015/07/kids-therapy-team-saved/.

Maybe one of these days I’ll actually blog outside of my role at Preemie Babies. Maybe, but no guarantees.

My Cup Runneth Over

September and October passed so quickly. I often find myself lost in the daily rhythms of raising kids: wake up, feed the kids breakfast, take J to school, run errands, each lunch, nap time, and on. Each day blurs past me and into the next one, and before I know it, months have passed.

So, I can’t say when M stopped walking and started running. Each milestone was so arduous until August. Every move she made was monitored. Then, she finally started walking at nearly 20 months old and never looked back. She is such an energetic, athletic, busy, curious, wild child that I’m sure I’ll sit on the sidelines of the soccer field when she’s in high school, and I’ll reminisce with the other parents about how long it took her to walk. And that she’s been making up for it ever since!

With my son, a motor delay led to a speech delay; we worked so hard to help him physically that his brain had little energy left for talking. But, I’m amazed to witness my daughter shattering goal after goal, whether it’s gross motor, fine motor, or language development. Each week she’s a new child with new tricks. And I feel a little guilty that in all this rush, I’m failing to document all the cute things she says and does.

I simply cannot keep up.

But, when your child has started life so tiny, so fragile, and so inundated with a developmental uphill climb, there is something extra special about watching her soar. And for the first time in the more than four years that I’ve been a mother, we’re now looking at a future without therapy of any kind. I cannot even speak to how grateful I am. My cup absolutely runneth over.

Another Victory

I took the kids to the activity center last week to a free play session in the gymnasium. The entire room was lined with mats, encouraging kids to tumble and run and play wildly to their heart’s content. It was a joyous chaos.

Not long ago, I never would have considered such a place. My son is reserved and cautious; a year ago he would have taken one look at that wild room filled with loud, squealing, out-of-control children, and he would have walked back out the door. For so long, he was delayed in his speech and in his physical abilities. He was small for his age, and other kids pushed him around at playdates and in parks. Even if they meant him no harm, he was nervous around kids he didn’t know, especially wild ones playing in wild places.

It wasn’t long ago that M didn’t move enough to play in a gymnasium. Now, she’s crawling AND walking; she’s toddling and falling and exploring her world in ways she couldn’t just a few months ago.

I’m always struck by the sensation that people outside of our world who don’t know us have no idea of these sorts of victories. J was jumping off of mats and hanging off of bars. M crawled for a solid hour straight, only stopping to smile at other children bumping into her, before racing off to new discoveries. Nothing about these children suggests all the therapy it has taken to get us here. All of the interventions and teachers and advice and doctors. All of it.

As I watched J play with a friend, I remembered how distraught I was in his first months home. He was so small and so fragile. He was terribly unhappy. Compared to a baby boy born just five days earlier and dressed in the same red Christmas outfit, they looked months apart–which felt like oceans apart to me. And now, they’re jumping and laughing as equals, as friends.

This is what we’ve worked so hard to accomplish. Two kids happily rolling and walking and sliding and jumping.

Early intervention should never be underestimated, because maybe these kids would have gotten here. And maybe not. But, it’s not a maybe worth chancing.

This small victory has been worth it. It has been worth all of it.

A New Early Intervention Adventure

M has taken a few steps. If we encourage her, she’ll take two or three before she gleefully collapses on the floor and crawls away at lightning speed.

I wrote about her first steps in “Waiting to Walk” and more recently in “The Timing That Is Not Our Own,” but the truth is that we’ve seen no progress on any of her physical goals since she stopped getting physical therapy a month ago.

I’ve heard from a number of people specializing in developmental delays that a toddler’s brain, especially a preemie’s brain that is working overtime to catch up, will often focus on either walking or talking, either on physical goals or language goals. And I have seen that scenario play out in both of my children. The most recent example is with M, who is now picking up at least one or two new words each day, but she’s not walking, though she’s nearly 19 months old.

We had M assessed by the state this week to determine her eligibility for early intervention services, and, as I expected, she has significant delays in her gross and fine motor skills, while she’s completely on par with her peers in language development. Until age 2, our state corrects for prematurity, so M is being evaluated based on when she should have been born and not her actual age. Before we moved, we lived in a state that was more aggressive in the first years and did not adjust for prematurity. There she would still be evaluated as an almost 19-month-old, instead of a barely 16-month-old.

The advantage in M still not walking is that she qualified this week for therapy, and once a child has services and is in the early intervention system, it’s so much easier to increase or alter services. I am so relieved to know that M is now in the system, so she’ll be followed more carefully until she’s 3. Had she not qualified now based on the referral generated by our out-of-state move, we might have had to wait until her delays were even more significant before she received any services.

I am such an advocate for early intervention, because I have seen the difference it has made in my children. I don’t believe in waiting to see what happens. Children’s brains, particularly in their earliest years, are fantastically malleable and incredibly resilient, so the philosophy behind early intervention is to help children bounce back from all the setbacks of being a preemie during the window when a child’s brain is the most forgiving.

So, I’m thrilled that M will receive early intervention, but I’m also surprised that she qualified for occupational therapy instead of physical therapy. Occupational therapy is generally more focused on skills necessary to everyday life.  Our former pt texted me, “What did she not do?” and I texted back, “Walk?” with a smiley face. I think the belief behind the recommendation of occupational therapy over physical therapy was that if we push M too hard physically just when her language skills are blossoming, her talking may suffer as well. And the therapists assessing her all agreed that she is so very close to walking.

But, as her mother, it was my job to say, “Yes, but she’s nearly 19 months old, and she’s not walking. I see that as her biggest issue right now.” And it’s my prerogative to be concerned that maybe we really should be pushing her physically, because she is capable and she is falling so far behind. However, I will reserve my judgment until we meet our occupational therapist and set M’s new goals. Occupational therapy will be a new experience for me, and as long as we can give M the confidence she needs to begin taking steps on her own, I’ll be grateful for the help, regardless of which kind of therapist provides it.

It’s Time To Move On

I think we sold our house today.

I won’t trust that it’s sold until we have the check in our hand, but in the short term, it really makes no difference. It’s now time to begin rapidly packing up, shutting down this life we’ve made here. It’s time to put all our treasures in boxes and pull up stakes and move to a place that I hope will become a final destination, the place my children will call home.

I hate moving, and it’s always sad. This is our fifth out-of-state move in ten years. But, this move is different, and what is painful about this move is so different. It’s not the friends I’ve made, because I haven’t made many. It’s not the people I see on a daily basis, because I don’t see many. I’m not leaving a job behind or a school. The most important people in my daily life will all be going with me.

I am most sad to leave my kids’ preschool. The teachers there have been fundamental in shaping my kids, in giving them confidence as well as knowledge. They have pushed my babies to high standards, encouraging them to achieve new goals. They have loved my kids, cherished them in a way I never could have expected. I was so worried to leave J that first day at school when he was a 16-month-old baby who couldn’t crawl or walk or stand on his own. Literally, he couldn’t stand on his own two feet, and now? He runs and talks and laughs. He has a pack of boys he plays with. He is independent and confident and more outspoken than I could have imagined two years ago when he wasn’t speaking at all. The transformation in just the last six months has been phenomenal.

I am deeply saddened that M won’t have the same experience. She has only had four months at the school, but she already has such a joy and exuberance for learning. Her teachers thrill her. She watches for their reactions, and she soaks up their attention. M looks straight into the face of each little friend in her class with such excitement, as if they’re all her new best friends. I have no doubt she would love for me to just leave her at school everyday. And I would, if I could.

And our physical therapist. Our pt. Oh, how will I leave her? These last 3.5 years, she has known both my kids better than most of the people in their lives. She knows their personalities. She has been aware of the big and little things happening in our lives. She is one of the only friends I have here, one of the few women I see on a regular basis. During this time of such loneliness for me, she has been an island of reassurance and kindness. I don’t have to explain what has been hard about this life to her, because she already knows. But, she’s also a steady reminder that other families have it so much worse. She gives me the freedom to fret and question and wonder, but she also has great suggestions and advice just when I need them the most.

All the people I am dreading hugging goodbye are related to this difficult and beautiful journey we’ve been on. I swear everything about this place from the time I arrived five months pregnant and only six weeks away from delivering J until this very moment has been about having preemies. This entire chapter of my life’s book is about the magic of these kids.

And it doesn’t matter how ready you are to start writing a new chapter, closing the book on a place is difficult. Especially when it’s the place where you had your two tiny babies.

Waiting To Walk

It took J forever to walk.

By forever, I mean 17 months.

Actually, in retrospect, I thought it took J forever to walk, but now I have M to put his development into perspective. M always has this effect on me. She is nothing like J, and her story is nothing like J’s. She is exuberance to his reserve. She is fearless to his caution. She is defiant to his obedience. She had 3.5 more weeks in the womb than he did, which any preemie parent knows is just about a lifetime. She also had two rounds of steroid shots to develop her lungs just before birth; J did not.

M is almost 16 months old. By adjusted age, she is nearly at the point when J was hanging onto his walking wings for dear life, taking his first steps of hard-fought independence. Despite all their differences and her perceived advantages, it appears that she will walk no earlier than he did.

If J changed everything in my life, turned it all upside down and inside out, then how could M be such a surprise? She has shown me that even when you think you’ve made sense of the world, you probably are still just a sweet, little babe in the woods, naïve about your own naivety. So much of my frustration with J was misplaced because I compared him to unfair goals and children who weren’t born prematurely. Now, I realize that every goal he met, every step of forward progress he made, was nothing short of miraculous.

Not to take anything away from M, because she has overcome odds too, but it was J who was thrown to the wolves at 26 weeks with so many challenges. In his caution and reserve, sometimes we miss the magic of his accomplishments. They aren’t done in explosive fits or with gleeful giggles, like with M, and so sometimes we look up one day and find that tiny changes have compounded into J becoming a totally different child.

Now, as I await the tentative first steps of another late walker, I also realize something else. The early years of raising premature babies are different from the norm; in fact, they are vastly different. And even though the kids are all different too, there are some commonalities that preemies share that we cannot escape.

It doesn’t seem to matter that M’s personality is nothing like J’s, or that she’s a girl and he’s a boy. It doesn’t seem to matter that she crawls and he didn’t, or that she had 25 more days of development in utero. Here we are at 16 months with a baby who isn’t yet walking. And in my world, that is perfectly normal.

The Importance of Preschool for Preemies

I have become such an advocate for preschool education. In fact, my own personal rule is that I want my kids in part-time preschool as early as possible. I stress that this is a philosophy that we’ve adopted in our own home, and I would never apply it across the board.

What would we have decided if our kids weren’t preemies? I’ll never know. Would I have been working full-time? Probably, which would have meant my kids would have been in daycare. But, my personal decision when J was a baby was that I didn’t want a babysitter overseeing his therapy, and I was at an in-between place in my career anyway. I couldn’t envision seeking full-time employment in the middle of such a difficult time for our family.

Those were our decisions for our family and by no means would I apply what worked for us to other families.

But, I will say this: As babies and small children, preemies are different. They often require trips to specialists, or at least extra visits to pediatricians. They need special protection during cold and flu season, especially against RSV. They often need therapy–and sometimes lots of therapy–to help with eating, walking, and all the other things full-term babies seem to grasp on their own. With J, physical and speech therapy made a huge difference, and I’ve written about how indebted I feel to his therapists. But, another area that I feel has been a key to his success has been preschool.

We’ve been lucky enough to have access to a preschool that specializes in developmental delays. It integrates children at or above their ages in terms of development with those who are delayed for a variety of reasons. Interaction with other children does wonders for preemies, especially when the preemie is an only child, as J was. He was so cautious and reserved that he needed to see what other children his age were doing to encourage him to do more. And playing on a playground or seeing kids in a playgroup didn’t cut it. He needed the academic environment, the structure, and the proven methods that a preschool can provide.

I could write volumes about our experience with his preschool. They have taken a baby who couldn’t walk or talk and encouraged him to be the bright, curious, and energetic boy who was hiding just beneath the surface. J’s delays confined him to a body that didn’t do so much of what he wanted, and all of the hours at school helped free him. It has been a magical transformation to witness.

And it has been eye-opening for me. I’ve had people tell me that developmental delays aren’t a big deal, that kids will catch up, and while that is probably true, a small child’s brain is phenomenally elastic. Studies show that the more a child can do in those first few years, the better that child will do long-term. So, just because many preemies in the past caught up by age 5 or 6, when they were entering kindergarten, doesn’t mean that I should be relaxed about helping my kids reach their full potential as early as possible. And the truth is that many of our preemies now have few comparisons. The development of surfactant therapy in 1990 has contributed to the increased health of the tiniest preemies. I doubt J would have lived without it, and he certainly wouldn’t be as healthy. Our babies are living in the first decades of increased health for preemies, and along with that health comes increased possibilities.

J and M have received home therapy where someone trained in childhood development encouraged me to try different techniques to help my babies. It was home-based and focused specifically on the needs of my children. Sometimes it was helpful, and sometimes it really wasn’t helpful at all. My children do not perform for me the way they do for their teachers and their peers, and I would never claim to be trained or skilled in childhood development the way teachers and therapists are. Not every preemie has access to the kind of resources from which we’ve benefitted. I know we are so lucky. But, I do think that any good preschool could help preemies who meet minimum requirements for enrollment, such as walking or being potty trained, and I think it’s wonderful for preemies to get exposure to other children as soon as they are healthy enough.

All of this is on my mind because M just started attending J’s school last week. She is 13 months old now, and I couldn’t be more thrilled about her opportunity to learn and grow at the place that has done so much for J. (As a side note, neither of my very independent children cared less when I dropped them off for their first days at school. I thought M might look a little sad, since she is more attached to me than J was, but I was totally wrong. She didn’t even give me a second glance!)

From my experience, little kids need interaction with other little kids, and not just in playgroups. But, I’ve said it before and I’m sure I’ll say it many times again: I don’t know anything about raising full-term babies. Preemies are all I know!

Thank You To Our PT

The same physical therapist has been coming to our home weekly–and sometimes twice a week–for almost exactly three years. Three years of opening the door to her smile. Three years of asking her questions. Three years of watching her work with my babies. Three years of chatting with her. Three years of seeking her advice. Three years of her knowing my children better than almost anyone else.

How do you measure that? How do you quantify what she has done for us? Whatever she’s being paid, it should be tripled. And then tripled again.

During dark days and quiet days and lonely days and frustrating days and days on end of no contact with any adult other than my husband, she was a bright spot for me. She was something different to spice the weeks up when J and I were under house arrest and we only saw each other.

How can I explain to someone who hasn’t had a special needs child what it means for someone to be a lifeline for you? What words define what someone means to you when she’s encouraged your child to goals you weren’t sure were possible?

Some days when I miss teaching, when I miss writing, when I miss feeling like I’m making a small difference in the world, I think of people like our pt. Whatever I’ve done to help people is nothing. Nothing. I have been witness to real heroes, and I’m not one of them. I wish I’d excelled at science so I could have been a physical therapist or a NICU nurse. These are the people who on a daily basis affect real change on the world around them.

We are only one family of dozens and dozens our pt helps. My children are just two of hundreds she has helped. I know it must be stressful at times working with babies and children who struggle just to hold objects, roll over, and sit. But, I hope that she can rest her head easy at night knowing that her life’s work is so meaningful.

It isn’t a permanent goodbye yet. We are following our pt to her new job at a clinic, and we’ll hopefully keep seeing her until we move. But, our weeks won’t be quite the same once she’s no longer visiting our home. I will miss her tremendously.

Life with preemies is unexpected. And unexpectedly hard. But also unexpectedly wonderful. I wouldn’t trade all the hard because the good is so good. And it’s people like our pt who have made it so.

Thank you. Thank you. Thank you, K.