I do not like babies. Or so I thought for many years. When I was pregnant with Vman I couldn’t wait to hold him in my arms, snuggle him up and just love him. He, however, had different ideas.
Even just days old, Vman made his presence unavoidably known. By the fourth day in the hospital, my husband and I actually recognized his scream from other babies as they returned him to our room (again) because they couldn’t get him to calm down. They thought he could be hungry. I thought – you’ve got to be kidding me! We were already supplementing him with bottles because nothing else would soothe him.
Quickly, a pacifier was surgically attached to his mouth. And the amazing thing was, he could both suck on the pacifier and scream his head off at the same time. This was one talented kid.
The blood curdling screaming continued at home. My husband became a master at bundling him and was the only one who could do it tight enough to make a difference. Instinct took over ,and I naturally turned off the TV. The lights went dim. Shades were drawn. The radio went silent. But Vman did not.
Anyone who has dealt with a screaming infant knows that it’s tough to deal with it for a half an hour. Now turn that into hours. Sound familiar to any SPD parents out there? Thought so.
I remember thinking I knew being a new parent would be tough but this was ridiculous. He screamed if I held him. He screamed if I didn’t. He screamed if I sang to him or rocked him, and he screamed if I didn’t. He never napped during the day but sometimes would pass out in my arms for 20 minutes. And for those 20 minutes I didn’t dare move, sneeze or even breathe out of sheer fear that he would wake up.
Out of desperation I would go on endless walks. And when the winter hit and I couldn’t use the stroller anymore, I packed him up in the baby Bjorn, wrapped my coat around the two of us and walked the city streets for relief.
Where were those precious moments of rocking my baby in the middle of the night and relishing in his newborn smell? Where were the joyful afternoons of counting his itty bitty toes? Where were the warm fuzzies I was supposed to give and receive from this bundle of love?
I was a mother now, dammit! And as much as I loved my baby, I didn’t like him very much. He didn’t give us much to work with. So I chalked it up to the fact that maybe I just wasn’t a baby person.
Looking back, I knew. In the deep pit of my stomach I knew this wasn’t the way things were supposed to be. But as a new mother, I didn’t know any different. For a long while I blamed myself for being such a terrible mother that I couldn’t even soothe my own child. Then, as he got older, I blamed myself for not listening to that natural instinct that told me something was wrong.
The pediatricians kept telling me he was fine. He happened to be a child on the extreme end of colicky. Part of me wants to go kick those pediatricians in the ass. And the other recognizes the medical community is still figuring out SPD. So I can’t blame them — but I sure as hell can educate them.
So I think back to that scared woman who is wondering what is wrong with her. The whole world is in love with babies, and she thinks the whole world must be smoking crack. How could anyone love this? Well, it turns out that I love my son deeply. Sensory processing disorder, on the other hand, can go to hell.
SPD robbed me of so much enjoyment. Of enjoying being a new mom, of enjoying those priceless moments with my newborn. But even in the grips of terror of this tiny being, I still managed to take in some of the good. Even as I walked the city streets in fear that the ongoing screaming would never end (and it didn’t until he was well past 1yo), I still managed to find good when things felt bleak. I could put the most ridiculous hat on Vman and laugh that even though I may not be a baby person, I sure had one adorable baby.
To read more of my posts touching on Sensory Processing Disorder, please click here. To learn more about sensory challenges or to join our inclusive community, visit The Sensory Spectrum.
So much rings familiar. And, if I’ve said it once, I’ve said it a hundred times: when your pediatrician says your baby has colic, it just means they have no idea what’s wrong and they give up. They expect you to just tolerate the fact that your child is miserable and is in pain. Screw that. My kid had acid reflux and his esophagus was burning up. Plus the SPD. Maybe that’s why I’m not a baby person either. Great post!
You are telling my story. Thank you for sharing! I, too, gave in to walking through my city, baby wrapped tightly in his carrier…it was the only thing that kept us both sane. As he approaches 2 I wish I could still do that because now he is strong enough to kick AND scream. It wasn’t until his 18-month check-up that I finally received referrals to therapy and only primarily because I told them I wasn’t leaving without it. Moms know, whether it is your first or fifth. You know…and we must advocate for our children to get the help they need. Kudos to you for trusting your instincts!!
Can identify with so much of this Jenny – walked the park in all weather in tears because it was the only thing that calmed xxx
Truly no one understands until they have a colicky baby of their own. Otherwise, those parents that say their kids cry really don’t know what true crying and screeching is. Glad you survived, too… tears or not 🙂
I love this post. I can relate to so much of it. So so so much. Im so thankful that we finally know what it is that our kids are living with. I just wish we had known sooner. My stamina was higher. After 3.5 years of aaaaaaal these issues that stem fom SID I’m pretty burned out most days. I’m pressing on to learn new methods of how to privide her care, unlearn tge old ways and regain my patience. Its uphill right now but I will press on.
It is uphill. It took a while to upright my family and myself. But I’m happy to say that we’re all doing well now… but there were certainly days it didn’t feel like we would ever get here. Just keep putting one foot in front of the other. You’ll get there!
Loved this Jenny. My son cried and did not sleep for the first 3 days of his life and as a result I didn’t sleep either for 3 days and nearly lost my mind. It wasn’t exactly the start I had imagined! Although my son does not have SPD, he is extremely sensitive in a number of areas (diagnosed by an OT) and I had always had this feeling too that something was not quite right, but blamed myself (I always used to say I wasn’t a baby person.) Now that he’s 4 1/2, I still have to catch myself and try not feel guilty when I can’t seem to help soothe him when he’s upset. I know you had a much tougher go than me, but I just wanted you to know that I heard your story and it impacted me. Thank you!
Don’t discount your own experience! Remember… it’s happening to YOU. And definitely don’t blame yourself. That’s an easy and slippery slope, I know!
I love your posts. This is my baby story as well. It took me 6 years, numerous doctors, horrible medication trials and years of family stress before I finally found the right OT/parent coach. What a difference she has made. I finally understand my son, know how do soothe him, feel like I am a good mom and not just managing a crisis.
Boy… getting through to where everything doesn’t feel like a crisis is such a turning point! Bravo for keeping with it to figure out what was going on with your son.
My daughter was the baby in the hospital nursery that screamed at the top of her lungs. She would not breastfeed. In the first two days of her life, she was losing weight due to me not being able to get her to eat. I gave in and gave her formula. That seemed to help some. She also had to always be moving. She practically lived in the infant swing. It was the only thing that would help soothe her. As she got older she did not like to be held. I would try to read to her at night (like all the websites said to raise a good reader). She squirmed and when she was old enough would roam around the room. She also did not crawl even though I tried to do the tummy time the pediatrician recommended.
I mentioned all these things to the pediatrician. She patted me on the head and I was assured that all babies develop at different rates. I had heard of autism but not SPD. At 3 she was diagnosed with intermittent esotropia (one eye turned inward) so it seemed she was taking in the information around her primarily on one side.
She had terrible meltdowns. Again I mentioned it to the pediatrician (a new one this time). She was given a referral to see a pediatric ophthalmologist but I was again patted on the head and told that I just need to be more firm with her. Seriously? She would just scream during time outs and airplane rides were torture because she would refuse a bottle and could not chew gum without swallowing it. After three years of patching and wearing classes from the age of three her eye was medically “fixed” but now she just had a vision problem.
Finally at the age of 8, she was diagnosed with ADHD, dyspraxia, and sensory issues. All this time I had felt like the world’s most inept mother because I couldn’t seem to soothe her and her energy level never seemed to decrease. I was lucky in the fact that she did nap until about the age of 3. Then she just stopped and it was a fight to get her to take one, so I decided get sleep at night was more important than napping during the day.
At the age of 8, she still could not tie her shoes, she would get (and still at times) frustrated very easily, she also could not swing herself on the swing, and would constantly spin around in circles (it seemed like a coping mechanism), she also would go through these very long intense phases with certain characters/objects (i.e. Tinkerbell, rocks). The Tinkerbell phase lasted for 3 years (from about 6-9). After a year of OT, she finally was able to swing herself on the swing and make it across the monkey bars on her own. She still loves rocks and wants to be a geologist when she grows up.
We have found that deep pressure seems to calm her. She has not been officially diagnosed with Aspergers (I know that is an old term) but the doctors/SLP/OT have been treating her for it since she seems to display so many symptoms. We do not have a developmental pediatrician locally, but her caregivers seem to think she displays many of the symptoms.
We live in a rural community and homeschool as I do have a degree in teaching and the schools here don’t seem to offer much in the special education services. We homeschool for other reasons, as well.
Your site has been very helpful as we continue on our journey.
I have learned more about SPD/Aspergers/ADHD in the last 3 years than I ever knew possible…
She now takes medication for ADHD, insomnia, and is on a sensory diet. If I had known when she was younger I could have been helpi9ng her much sooner.
She is 11 now and will spin and spin and spin.
Hi, MJs Mom. Thanks for sharing your story! I think our story is a lot more common than we know or would believe. Because SPD is not officially in the DSM, a lot of doctors just aren’t educated about sensory issues. And while you had to muddle your way to figuring things out (just like we all do), you’re doing what you can now … and that’s what really matters. Your daughter is very lucky to have you as her advocate and as her mom.
thank you for sharing this. I can relate on so many levels as my daughter cried and cried as a baby and it was so hard. She has sensory processing disorder (combo of seeking behaviours and some avoidance behaviours). She hated to be wrapped- had to have arms and legs free or she would scream the place down- some was silent reflux but most I know now was SPD- even the constant comfort sucking and trying to wean her from 12 months to 16 months when Dr basically told me he could see how frazzled I was and perhaps cold turkey was the best weaning approach with this child- I cannot tell you the relief that gave me – permission to wean and not feel guilty about it. Having early childhood nurses try to tell me how I must be doing everything wrong until I said ok show me and they saw with their own eyes what I had been trying to get them to understand. Sleep specialists and Drs who at 2 told me it may be behavioural but too early to tell. Sleep is still such a huge struggle- causes meltdowns, will not brush teeth, hates clothes, food aversions, making a huge mess with sensory seeking always water everywhere and compulsive noise (scatting etc). It is so good not to feel totally alone and know others understand. Thank you