Over the next few weeks I shall be publishing stories about coping with a high needs child from different mothers' perspectives... Sleepless nights, constant crying, colic, nursing around the clock and dealing with life threatening illnesses and conditions. I shall start the series off this week with my story, one of little sleep, a lot of self-questioning and mountains of patience that I didn't think I ever had. I didn't even know what a high needs child was until Luna was around 18 months old, and then everything kind of made sense to me... We just ended up figuring things out together along the way. I hope that these stories will help other mothers with high needs children feel less alone.
I skimmed through Dr Sears’ The Baby Book right before I gave birth, looking for last minute tips on how to establish breastfeeding and how to get through labour without needing meds. I loved his writing style and how he promoted all types of attachment parenting logic, and the book actually made me feel all warm and fuzzy inside. Then it was put back into my bookcase to be forgotten about and never really revisited, not until months and months later when I was frantically searching “18 month sleep regressions” on Google that I came across a Dr Sears article on high needs children. For the first time in 18 months I actually felt like I hadn’t done anything wrong with Luna, or failed her in some way. She ticked every single box on his list. “High needs child” was finally something that I could use to explain everything without searching through my sleep-deprived brain for an answer to why my child never slept, never wanted to be apart from me and had meltdowns over just about anything.
No one ever expects to have a high needs child (unless you already have one and just assume it’s the norm). There are no warning bells that go off during your pregnancy, or right after delivery. I remember getting a cab home from the hospital in Brooklyn to Queens, and getting stuck in horrendous traffic on the BQE, and a 2 day old Luna screaming and screaming. That basically became our norm for many months.
I had bought an adorable little bassinet for her months beforehand, and her little 18 inch body looked so tiny in it. Swaddled or unswaddled she refused to sleep in it, falling asleep contentedly in my arms and screaming as soon as I put her down. Those first nights I wondered if it was me, was I not nursing her properly? Was she hungry like the nurse had said in the hospital? Was I an absolute failure at breastfeeding and actually starving my child? Dr Google told me to count her diapers and she was peeing and pooping more than enough, so that wasn’t the issue. Cesar went back to his 80 hour a week job and needed all the sleep he could get so I just moved to the couch where I could nurse the baby for hours and hours and watch entire seasons of shows with zombie eyes, hoping to be able to place her on her lounger for a few minutes in order to close my eyes for a while.
I followed the advice of creating a routine and sticking to it and it didn’t make one ounce of difference. She would never nap according to a schedule unless I popped her in the sling and went out for a walk, not too far mind you because if she woke up suddenly I was in for it. She had her bath at the same time every night, and loved it, followed by baby massage and a story and then I would nurse her to sleep, but about two weeks in she would start crying hysterically at that point, body completely rigid, and nothing would soothe her. I would text Cesar hysterical texts myself, not that he could do anything either seeing as he was at work… Eventually I figured out that maybe she was overtired or gassy or both and moving everything a half an hour earlier and adding a few drops of gripe water and some leg bicycling to the mix seemed to fix the regular 7:30pm on the dot hour of screaming.
It didn’t fix the actual sleeping issue. Everyone tells you to sleep when you can, sleep when the baby sleeps. You know that you aren’t going to get a full 8 hours of sleep anymore, but what happens when you actually have a baby that never sleeps? How do you actually get by on 20 to 30 minutes of sleep a night (literally) because your child will only sleep in your arms (and yes we tried everything, she even rejected the stroller). I know people probably thought I was exaggerating or doing something wrong, so I just stopped talking about it except to those I knew really understood. I dreamed of just two hours of uninterrupted sleep. There were days when I thought I would actually sell my soul willingly for just an hour of sleep.
We adapted. A friend of mine bought us a baby swing around the two month mark and Luna ended up sleeping in it for two to even three hours at a time at the beginning of the night and it saved my sanity. She even slept in it at night (not proud of that but it was the only place she would actually sleep for more than 20 minutes apart from my arms), but in the end I was so tired and after three months just couldn’t face any more sleepless nights, and gave in and took her in the bed with us. I suppose if I had done that from day one I would have saved myself and Luna a lot of tears, but I was just following what everyone said to do. Of course now I know that safe bedsharing is absolutely fine and am not worried about it, but I felt so guilty at the time! That said, at 2.5 years old Luna still sleeps with us and still nurses around the clock so they don’t just “grow out of it” like that.
I would see people mention “sleep regressions”… We never had any of that because she never slept anyway. Teething? It was apparent when she became more fussy than usual, but as fussiness was our norm anyway it was never actually too bad (and all of the molars came through without me even really noticing too much of a difference in mood). Going out? Cesar and I went out once together when she was about 6 months old and she cried for a lot of the time that we were out (three hours tops). We didn’t revisit that until her sister’s birth nearly a year later. Going out altogether? It was a struggle, but I’m one of those people who won’t give into my fears easily, so I used to push through them and learnt how to breastfeed just about anywhere in public (without a cover because if I ever tried to cover her, her banshee screams could be heard for miles). I learnt that it was OK to cancel on something if I didn’t feel like we could make it through without a meltdown (and we cancelled a lot of things the first year). I can’t praise Ergo enough for creating a comfortable contraption that not only helped us navigate trips into the city and grocery shopping, but also through simple activities like walking to the park, making dinner and vacuuming. There is no way I would have got anything done without our precious baby carriers. I used to take her into the city by myself, go visit friends, walk around with her strapped to me, always with a little bubble of fear that her mood would suddenly change and we would be stuck on the subway with nowhere to go to. She always refused to have a pacifier, which I’m happy about now, but I was always jealous of those babies who would suck contentedly on their paci in their strollers.
Luna is two and a half years old now, and still very much a high needs child. She’s extremely smart; fiercely independent in some ways and still very clingy in others. She nurses as often as her little sister and still wakes up several times during the night and fights naps during the day. She has very nervous tendencies, biting her nails when she feels uncomfortable or crowded, and has to have everything her way or she has a meltdown. She loves to walk everywhere, but if she gets tired wants to be carried instead of sitting in the stroller, and although I hate to admit it, I use a lot of bribing tactics to just get us to places. A lot of my days are spent trying to avoid a meltdown of some sorts, figuring out in my head how long we can do something, or the best time to do something… Sometimes I am surprised at how flexible she has become over time, and then other times I realize that everything can change in a second. She is an absolute delight, the sweetest little thing, and she will be a strong and determined young woman one day, conquering everything that life throws in front of her. She also tests my own abilities and patience every single day, and although at the end of the day I sometimes want to just curl up, spent, I also know that she chose us as her parents because she knew that we would all be able to figure it out together. And that’s what we do, one step at a time. There is no rush for her to be potty trained, to sleep in her own bed or to wean, she will be ready for all of these things when she’s ready, and that is fine by me.
I do understand that people don’t understand. It’s fine, I’m not asking them to. I do however ask that people respect the decisions that we make as parents, because for the most part I know exactly how Luna is going to react in any given situation and also that while she may seem fine at the time, we often all suffer from it for days afterwards. One missed nap can mean two days of tantrums and meltdowns. I have had to ask her pediatrician and cardiologist to make a note on her file that she finds visits very stressful and to be as gentle as possible so that we can work on making her realize that doctors and nurses are there to help and not hurt her. Getting frustrated with her usually just escalates any situation, and that is something that I also need to work on myself every day. It’s hard. Luna can detect my moods and emotions easily and I have to constantly check myself to see that she doesn’t notice my own anxiety or sadness.
I think that having a second child really helped me work through a lot of the feelings of parental failure I felt through the first year of Luna’s life. As babies, Aurora and Luna were like night and day, even though we proceeded in the same fashion with both of them… It just showed me that no child is the same, and that having one high needs child doesn’t mean that you will have another. And that some children actually like to sleep. All kids like to have the odd tantrum though… No one gets out of those!
I bet people wonder why we decided to have another child amidst all of this sleep deprivation… I guess I thought it would pass by the time she could speak?! We were actually more than prepared for years and years of never sleeping again, so you probably can imagine my surprise when Aurora started sleeping through the night two weeks after being born. But don’t worry, she doesn’t do that anymore, she loves to wake up at least three times, and still sleeps in bed with us too. Teething has been a real long, drawn-out pain for this poor little one and her new trick is to try to nurse for hours during the night. So don’t worry, these dark circles won’t be leaving my eyes very soon!
I wouldn’t have had it any other way to be honest. I’ve learnt a lot about myself over the past three years, my own strengths and weaknesses, and that in the end we adapt to our environments and to our young. They are only little once, and in my opinion this is the time to help them feel both safe and independent at the same time, even if they don’t make it easier for us. I’m glad that I had my high needs child first. Because after those first few months I was ready for anything, and still am. Long-term sleep deprivation and a full day of work at home while making sure the kids aren’t killing each other? I got it! (As Luna would say). I still feel like I have failed both kids sometimes, but I also know that that is not correct, and have to cut myself some slack sometimes. No one is perfect, and no one will ever be perfect. All we can thrive to be is the best that we can most of the time.
The Dr Sears article that I came across can be found here. The checklist describes Luna to a tee.