One step forward, two steps back: Parenting a "high needs" baby

After a "yep this sucks, but you can do it" messaging session with a Facebook Friend of another mother with a "high needs" baby, I am really constantly reminded how hard it is for us and others to really understand these children. While I can be one to engage in some occasional hyperbole, I am not being dramatic when I say that these children are INCREDIBLY hard to parent, partly because of their needs and partly because of the judgment you receive from others who really do not see your day to day struggles in your home. Despite my 20 years of experience caring for dozens of children (both typical and those with developmental disabilities) and an ivy league education in developmental psychology, I can honestly say that I was wholly unprepared for a difficult tempered child.

I have written about difficult tempered babies before when I first realized that Wilson was one, but here's a brief recap: Temperament is one of the most well-studied concepts in developmental psychology and the building block of our personalities. This is why multiple children of the same parents in the same family can be shy, incredibly independent, crazily active, responsible or just plain difficult. Of course, it can be altered, but, in most cases, temperament is an incredibly reliable predictor of adult personality.

If you are not sure if you have a difficult tempered child, let me help you out: you don't. These infants are EASILY recognizable (parasitic, emotional hot messes) and parents know beyond a shadow of a doubt that these children are different. Here's a few of these differences:

1. Intensity. These little people are drama queens. They cry louder, eat more, clearly and strongly communicate their needs and demands almost as soon as they are out of the womb. Wilson had temper tantrums at about 4 months (screaming at a toy that would not do what he wanted) and threw full blown toddler temper tantrums (complete with throwing his head against the floor, shrieking and biting) at 10 months.
2. Adaptability and Sensitivity. These babies adapt to novel environments about as well as a T-Rex - they would be extinct if they were on their own and roar equally loud. New things intrigue them, scare them and minor changes to their routine throw them off. Wilson would cry as if he were in pain when we changed his position as an infant. As a toddler, he is hard to direct and redirect - his patience and tolerance is what you would call "challenging". When you need him to do something, he can range from irritable to completely adversarial. He had an obsession with doors (still does) and would fly into full blown tantrums anytime we closed the refrigerator door, let the dogs out, closed a gate, etc. That was fun.
3. Mood. These babies are generally moody, with salient moods being fearful, sad, anxious, whiny and angry. Wilson could be laughing with you one second, only to shift into screaming, whiny, angry monkey at the drop of a hat. As an infant, he was predominantly in a horrible mood most of the time.
4. Predictability. Some babies are easy to predict. You know what they like and how to approach them (e.g., feeding, sleeping, etc.). Babies with difficult temperament are incredibly irregular. What works one day will not work the next. Mike and I would be so excited when Wilson would have a great night's sleep, wrongly thinking it was something we did. We fed him more, the bath-book-bottle-bed routine finally worked, we gave him a baby massage that night, etc. You grasp at straws trying to figure out what you did that worked so that you can repeat it to produce the same results the next night. And you clone your actions in a hopeful effort to reproduce the desired behavior in your baby. But, here is the horrible reality of a difficult infant: what you do matters, but not in the way you want. There is no predicting what will work and when. You just have to be responsive, hopeful, let them lead and try not to go insane.
5. Sleeping. Difficult tempered infants need constant emotional regulation and are often over-aroused. Because of this it is often difficult for them to put themselves back to sleep or to go to sleep in the first place. Wilson has slept exactly 2 nights through the night in over a year. He slept exactly 1 hour at a time for 2 1/2 months, never sleeps very deeply (wakes up with small noises, NEVER was "milk-drunk") and needs consistent sleep support even at almost 13 months. Sleep training failed miserably and progress usually takes months at a time.
6. Eating. Wilson eats an amazing amount. He eats almost every 2 hours, eating 3 meals a day, 2 snacks, plus about a half a gallon of formula/breastmilk from 9 months to his current age at almost 13 months.  

So if you find yourself with one of these little babies, is it all bad news? I can tell you, from experience, it is not. Wilson's smile melts us. With every day that passes, he gets better and happier. He is painfully smart (it is painful to us at least), requiring that we childproof EVERYTHING, figures things out easily and loves the challenge of obstacles and devices that he can figure out. He is so loving and kind, easily shares and loves to give hugs and share giggles. He is very tactile, hugging any soft toy and fluffy blanket with great abandon. Once he gets help regulating, he can be independent for long periods of time - coming back for help resetting when he feels upset. His love for life and new things is contagious. He has the best sense of humor, giggling at our silly faces and using items in a creative way (putting a cup on his head or ours).

We have had to change our behavior significantly, practicing self-care, being more responsive/respectful, proactive, consistent and understanding our own limits. We taught him to take breaths to calm down, followed his lead in terms for his readiness for a big change, called for the other parent to come rescue us when we felt we were losing it, been consistent with our rewards/boundaries, picking our battles (playing with some things in the refrigerator may be ok, whereas pulling hair is never ok) and reminding ourselves that he is not trying to be manipulative when he needs help. At 3 a.m. when he is having issues going back to sleep, requiring extra jiggling, drinking his bottle, patting his back or a snuggle, in my head I imagine him saying, "Mommy, I'm not ready yet - I don't feel good." This helps me a lot since his epic screaming and whining could easily lead to frustration and anger. Mike and I have found that we also need constant encouragement with each other. For example, Wilson recently went from horrible napping and getting up 5 times a night to suddenly (over the course of a month) a 2 to 3 hour nap in the day and only getting up once a night. He started being happier during the day, asking for us to read to him and using his signs and words to communicate. We were so excited, thinking that the worst was behind us. Then the next day, he fights going down for a nap, is miserable the whole day, gets up three times at night and/or stays up for hours at a time. We often feel like we have made one step forward, followed by two steps back. 

So, if you are a parent of a "high needs" baby, what can you look forward to? Here's the awesome news. If you are responsive, by age 3, these children are almost indistinguishable from easy children, by first grade they are the favorite students of teachers (even more so than easy tempered children), they love deeply, care about their world and are conscious of others' feelings. As adolescents, they are responsible, open and honest with their parents. The key is being responsive, working to become securely attached and conscious of what messages you are teaching your child with your own behavior. It is also the only temperament that is heavily influenced by early parental behavior (outside of abuse and trauma); what you do truly matters. 

As much stress as we feel parenting a difficult child, he makes our lives worthwhile and demands that we are better people ourselves. Even though we get stressed, I think of what would happen to Wilson if he was born to someone else with less patience, less education/knowledge or less tolerance for his temperament. Would he grow up feeling mistrustful, isolated, anxious, guilty for needing help? It makes me happy to see our effort pay off - he is more independent each day, exploratory, confidant, loving, kind and (mostly!) gentle.

I do believe he came to me for a reason and I take being his guardian a privilege, as he has made me a better person in one short year. The Dalai Lama (XIV) said "Judge your success by what you had to give up in order to get it." What have we had to give up in order to be the best parents possible for Wilson? We have had to give up selfishness, impatience, judgment, frivolousness, egoism, apathy and our own control issues. These are things that Mike and I would have taken years of therapy and/or years of struggle to achieve. Yes, this child and the quick changes that he has required of us have been difficult, but I would not trade him, or this experience, for anything, even the easiest child in the world.

Happy Birthday, Wilson!

Dear Wilson,

So, you are a year old! And what a year it has been! Last year at this time, mommy’s widwife was threatening a c-section and mommy said, “I can do this!” She rolled on her side, focused and relaxed and opened up the last 3 cm in 20 minutes.  After pushing for 5 hours (even daddy was sweating!), you came rushing out, finally ready to meet the world. Even though mommy was so worried about your birth, she should have been thinking about what happened after, because that was just as hard! This year has been a challenge for all of us and we’ve taken many missteps, but as individuals and as a family, we’ve learned a lot.

When we first met you, we knew you were a different kind of baby. You had such serious eyes and were so alert for a newborn. You would spend hours just looking out the window by your bassinet, looking at us, as well as your doggy siblings. Lainey became your buddy and lay by you day and night.  You only slept 1 hour at a time for 2 months and were never what your pediatrician called “milk-drunk”. You were so wide-awake that it was hard for you to sleep at all! When you hit 2 months, however, your temperament kicked in and we got to see the groundwork of your future personality.

You were very sensitive to a lot of things and it was hard because you were growing too quickly for a baby your age and getting way too many teeth! You wanted to be held just the right way; you loved being vigorously jiggled and patted; and you were very alert to changes in your environment. Your sensitivity bloomed into something beautiful this year. You feel everything very deeply: happiness, sadness, joy, pain, glee and contentment. Even though sometimes it was and is still painful, we see you giggling more, chuckling to yourself when playing alone sometimes, playing games and pranks on mommy and daddy, dancing to your favorite music and watching some of your favorite television shows (you are quite partial to Jake and the Neverland Pirates) on your boppy pillow with your bottle and blanket. We do not ever want you to stop feeling so deeply and passionately, Wilson. Even though the lows can be painful, it is worth it to experience the happiness that life has to offer you.

You have also worked hard to be able to regulate your emotions, eating and sleeping. Because you have what is called a “difficult” temperament (Mommy blames your father for that one), it is hard to understand when to start and stop things and how to feel. You also had to face a lot of pain this first year (learning to deal with constant growth spurts and teething pain), which was hard. Mommy and Daddy did our best to try to teach you how to slow down, take breaths (and you are even starting to do them!), try to understand what was happening and support you the best we could. We also tried to teach you boundaries and what was unacceptable. I think you may have broken the record for the youngest baby to throw a temper tantrum! You screamed at one of your toys when it would not do what you wanted when you were only 3 months old. And you had full-blown temper break-downs at 10 months. Mommy and Daddy did our best to teach you what was “not for you” what was unacceptable communication for distress (hitting, throwing things and smacking your head on various objects…) and how to deal with not always getting what you want. Something that everyone, even as adults, is still learning. You are doing pretty good with this now, not crying for as long, finding a new toy on your own and bouncing back much quicker than you did before. You love eating and do eat a lot – 3 meals a day, 2 snacks and half a gallon of formula/breast milk a day!! You certainly aren’t picky though! We are still trying to get sleep figured out, but you went from sleeping with mommy and waking up 5 times a night for about 8 months to sleeping in your crib and only waking up 1 to 2 times a night without any transition at all. You just told us it was time and we listened. We learned very quickly that you communicate your needs very well and it is important that we listen carefully because when you are ready for the next step, you go flying into it!

We also learned that you really needed us a lot. Maybe because it was hard to regulate or understand the world or even because you were in a lot of pain, you liked to be strapped to our chests or held in our arms for a very long time. This grew to be a wonderful affection and love for others that I see in you every day. You will be playing by yourself and come running over to hug our leg or be picked up so you can give us a kiss. You love your fuzzy blankets and stuffed animals and hug and love them lots too. You try to give Lainey kisses, something, which we frown upon, but happens anyway. We always want you to know that we love you and love that you need us. We know it will be all too soon that you will be a teenager and it won’t be as cool to hug your mom and dad or to snuggle with them before you go to bed. But, we will always love you, hug and tell you how beautiful it is that you are loving, caring and affectionate. And we won’t tell your friends if you still do ask for us to tuck you in before bed.

We also noticed that you are a little researcher. You pick up and investigate new things by making your researcher face, looking it all over, shaking it, tasting it, investigating every inch of the new item. You crave the novel and like to move things around so that they are in new places just to create something interesting. We’re pretty sure you get this from mommy. You are physically gifted, having great spatial awareness, moving quickly and at young ages. We’re absolutely positive you got this from daddy. You will be too when you get older and see mommy try to throw a ball. You are funny – you like to put things where they do not belong and giggle about it. You love to hang upside down, chase the dogs, push things across the floor and giggle infectiously to grandma and grandpa on Skype. You love doors, electronics, t.v. remotes (we have dedicated one to you that has no batteries, much to your chagrin), balloons, cars, fuzzy animals, trains, monkeys and dogs. These seem to amuse you, although we always wonder what you are really thinking. You have learned to talk quickly too – so far you say mom-mom, dada (which you whisper), dog-dog, ca (for cat), ama (grandma), aapa (grandpa), all da (all done), mo (more), na na na (no), yah (yep), hi, baba (bottle). You also use signs for all done, more and help.

It’s not just you that has changed this year. Daddy and mommy have changed quite a bit too. Even though Daddy was very afraid that he would not be a good Daddy, Mommy sees how amazing he is every day. He babywears you, takes you for walks, feeds you, plays with you, hugs you, changes you, makes fun play areas for you and painstakingly tries to make our house baby-safe. Although mommy has a sneaking suspicion that if he could wrap the floors and walls with pads, he probably would. Before you were born, Daddy told Mommy that he did not know if he could love anything as much as he loved Mommy. And then when you were born, he loved you the moment you came out and realized that he has two sunshines in his life now. Although he gets frustrated sometimes because he wants to do everything right for you, you have brought him a level of happiness and desire for life that he never thought possible.

Mommy changed too. Mommy learned that you can function on minimal broken sleep for months, that pumping breastmilk requires persistence and just like in other parts of her life, obstacles put in her path don’t keep her down for long. Mommy is definitely not your traditional mommy; she doesn’t worry about you falling or hurting yourself, but she does love to snuggle you and reassure you. Mommy learned how to be a whole person again this year: a mommy, a wife, a teacher, a researcher, a shaman, a social advocate, a friend (although that’s been hard to do this year, just ask her friends!), a counselor and a pet partner (animal-assisted therapy). You taught mommy to take things slow, to not take things for granted, to be in the moment, to time manage, to laugh at the little things, to take time for herself, to never back down from a challenge and to be authentic to who you are…always.

We have a lot more to learn and we look forward to all that we have yet to teach each other. We are blessed to be your guardians and to travel with you to show you this quirky thing called life. Thank you for making us realize what really matters in life again.

We have and will always love you,

Mommy and Daddy

p.s. Although tomorrow at your party you will get your birthday gifts, your gift to us was your first night of uninterrupted sleep (6:30 p.m. to 5:00 a.m. – and you even went back to bed for an hour and a half after drinking a bottle). Thanks for that and please feel free to sleep like that again.