Getting Real

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I’ve talked about our challenges with raising Madeleine before. Specifically, I talked about her many food intolerances and what that meant for her and our family. I’m back to do it again. No sewing angle this time. I just need a space to communicate. Be warned that this is a long post. My apologies in advance for my brutal honesty.  I have chosen to be as honest as possible in the hopes that this will help even one other person who is experiencing what I am.

Since Madeleine was born, both Eric and I have felt something was not right. Until Maddy was 8 months old, she was still waking every 2-3 hours at night, and sometimes would nap a total of 20 minutes the entire day. When we introduced solids at 6 months, she couldn’t stand them.  To this day, there are only a couple of things she will consistently eat, like avocado and chickpeas (and some days she won’t even eat those).  On top of this, she was not happy. She cried a lot. She constantly needed us, or, more specifically, me to be holding her… but not just holding her, bouncing her non-stop. But, even though she needed me holding her, it seemed to me that she hated being held. HATED. She would squirm, cry, and push away from me. She never would let us hug or cuddle her. While nursing, if I touched her at all she would squirm and push my hand away. In fact, if she seemed happy, I was afraid to move her, look at her, or make a sound for fear that it would all change in an instant. Aside from sleeping at night, all of these things were still true when Maddy was almost 9 months old.

In fact, at 9 months old, we’ve never heard Maddy really giggle. I mean, really giggle. Very infrequently she’ll let out a small giggle, but you know the kind of giggle I’m talking about. The kind people video tape and put on youtube.  Like this one, and this one, and this one. In fact, when she smiles, we still exclaim, “She’s smiling!” and run to get the camera… because it’s just so rare. Watching those videos makes me cry. They make me think what our home could be like, but isn’t.

Despite noticing all of these things, I let my inner voice, and the voice of friends and family who told me many times to follow my gut, get stifled by well-meaning others who constantly told us how pleasant and healthy Madeleine was. I can’t blame them… she does always seem to be more pleasant when visitors are around, or when we’re out in public. Combine that with her food intolerances and teething issues, and things get confusing quickly. I eventually stopped talking about our struggles, because the reactions of others started convincing me that I was the one who had the problem, not Madeleine. I went as far to ask Eric if he thought it was possible I had postpartum depression without knowing it (don’t worry, I’ve also addressed this with professionals and do not have it). It was to the point that I had just decided I must be crazy or an incompetent mother.

Even my own parents, who had heard me talk about her crying, and the difficulty I was having at home didn’t fully get it until recently when they spent a weekend at our place. My mom had said to me over the phone awhile back that her and my dad understood that I wasn’t enjoying motherhood. I’m embarrassed to say that my response was, “That’s because I’m raising a devil child”. And, I’m sure you’ve guessed… they were right. They were so right. Not only was I hating being at home, I was hating being at home with Madeleine. I was doing everything in my power every day to try to get her to play on her own…. to not need me so much. She was sucking every ounce of energy out of me, and then demanding more. I was starting every morning on empty. I was dragging myself out of bed every day, resentful of the fact that Eric got to escape to work.

These feelings didn’t come easily. In fact, they riddled me with non-stop guilt. Guilt that I hated being around my daughter. I feared that she felt unloved, and that I was doing harm to her emotional development. Deep down I just knew she was feeling how resentful I was. I was worried that her unhealthy attachment to me was a result of her understanding how miserable I was with her. That it was her begging me for love. I felt horrible guilt when my arms were just too tired, and my patience too thin, and I’d sit her on the ground to cry. She’d look up at me with her big, sad eyes, tears rolling down her cheeks as she cried, “Mama, mama, mama”. I would cover my head with a pillow so I wouldn’t have to see her, but all I could think was what a terrible mother I was… how if people really knew, what they would think of me. How any mother who loved her child couldn’t do this to them. This series of her crying like this while I covered my head didn’t happen infrequently. It happened multiple times a day. Sometimes as many as ten times a day. It’s a terrible feeling that even after giving everything you’ve got to your child, it’s still not good enough.

Let me remind you that while this was going on, the message society was sending me (whether intentionally, unintentionally, or whether it was solely my perception) was that babies cry. Everyone else can manage, why can’t you?

On the weekend visit with my parents, they came to the same conclusion Eric and I had long ago. Something was not right. Like us, they couldn’t exactly pinpoint what the problem was. Maddy could go from happy as a clam to angry, full-out meltdown in less than a minute. I’m pretty sure the only time my parents saw Maddy smile the entire 22 hours they spent here was the ten minutes she spent on a swing in the park. They really pushed us, saying that we need to be making appointments, and demanding that someone look into this…. not just for Maddy, but for us too. Like parents often are, they were right. Our house was filled with so much stress, it surely wasn’t good for us. In fact, if Eric and I didn’t have such a solid relationship with good communication prior to having Madeleine, I’m not sure we would have made it this far.

Eric started making some suggestions based on observations he had made. Maddy was always happiest first thing in the morning, and last thing at night… when she was in her disposable diapers and sleepers. So, we started leaving her in that all day. Wouldn’t you believe… things got slightly better. Initiated by this train of thought, we started thinking that she was maybe having some sensory processing issues. My older sister, Lindsay, is a speech-language pathologist, and happened to have an assessment (the Infant and Toddler Sensory Profile Questionnaire by Winnie Dunn) for babies that parents could fill out to determine if a sensory processing disorder existed (provided to her by her friend, Cynthia Miller-Lautman, who is an occupational therapist in the Montreal area). We filled it out, and Linds helped us score it. The results suggested that something sensory was going on. We immediately booked an assessment with an occupational therapist at Blue Balloon in Waterloo, a multi-disciplinary pediatric health centre for children with developmental and neurological challenges. The results are in: Maddy has been diagnosed with a sensory processing disorder.

What are my feelings about Madeleine having a sensory processing disorder? Relief, resentment, fear, sadness, hopefulness. I was relieved that finally someone had heard me. My experiences with Madeleine were being validated. I wasn’t crazy, and I am not a terrible mother (I hope, anyways!). That quickly transitioned to resentment and fear. I was resentful that so many other people have happy, easygoing babies… and we have Madeleine. Fear of what a diagnosis might mean for the future of Madeleine and our family, both emotionally and financially. Fear of the struggles she could face socially, emotionally, and educationally because of this. Then I felt incredibly sad. Sad that I can’t control this. Sad that I can’t make Maddy feel good or happy. Sad that I can’t prevent Maddy from being hurt, from feeling pain, or from having struggles in life. I’m just now starting to feel hopeful. Hopeful that Maddy will respond well to therapy, and that with early intervention, most of these issues will be mitigated. Hopeful that this struggle will make our family stronger, more loving, and able to tackle anything.

What words of advice can I offer after going through all of this? To parents: trust your instincts. You know your baby better than anyone. Don’t let the judgemental looks or well-meant comments question yourself.

To friends, family, and strangers who see or hear about parents who are struggling: don’t assume you could do it better. Don’t tell a stranger in public it sounds like she’s pinching her baby (yes, a woman shouted this to me at Zellers once). Don’t tell them that babies cry. Don’t tell them that they’ve spoiled their baby. Don’t judge. Please, don’t judge. We do a damn good job of judging ourselves already. In fact, we do a much better job of judging ourselves than you could ever do. The only thing that makes going through something like this worse, is the feeling that you’re doing it all alone.  Trust me on that.  I am so not alone with a ton of support from Eric, and our friends and family… but I still feel alone at times.

Lastly, I assure you, that if you could spend one week in my shoes, you would understand. You would get that it’s not that Maddy’s spoiled, it’s not because she’s a baby, and it’s not because of the way Eric and I have raised her. She is who she is. She’s a unique, beautiful, strong-willed, determined baby who is struggling and can’t communicate how she’s struggling.

Please, I beg of you, listen to parents like us without judgement. Offer them the emotional support and friendship that is so needed in difficult times like these. They are reaching out in the best way they know how for your support. Know that the hardest part of looking you in the eye and admitting these feelings to you, is that they are admitting to themselves that this is their reality.

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21 responses »

  1. When mom told me that Lindsay had offered you the sensory integration tool, I was relieved that it could be helpful. I had mentioned to Lindsay the possibility of sensory concerns with Logan when we were discussing his temper tantrums once. I’m so glad the connection was made for Maddy and it could help you in searching for answers.

    I cried while I read your post – not feeling as sad for Maddy because I’m sure you and Eric are wonderful parents, but sad for all that you’ve gone through. I know I don’t live far, but I wish I lived closer so I could even help give you periodic breaks throughout the work week. I hope that the journey you’re about to take will help Maddy become much happier … as well as your home. Lots of love!

    • Wow! That would be a very difficult situation for anyone to go through. Glad you finally have some answers. If she is sensitive even just the lighting or noises made on a daily basis in and around your house may really perturb her. Poor thing! Poor you! She is a beautiful baby and she will get through this because you are there and you are strong. Way to be Ashley! Keep up the great work!

      • Maddykins is one loved girl!

        Ash, I think you should blog more about parenting – both the joys of Miss Maddykins and the direction her life is currently taking. You can always make it more anonymous if you want, but you may be amazed after doing treatment with her to look back and read about the challenges you currently have.

  2. Better days ahead, Eric & Ashley. If it were easy, anyone could do it. You`re each well chosen to the task ahead. Maddy is so fortunate to have you in her lives. Smoothly sequeing into digger machines at Southside Park… today, on arriving and leaving a dig site several levels below street level in Pierrefonds, the operator of the articulating scoop used his machine to rotate the bucket around to use it as a hand and wrist to wave him hello… His scoop was near enough to touch the fence separating us.

  3. Hi Ashley, your comments hit close to home. I’m saddened by your reality but impressed by your boldness. Your sister and I often sit and have ” very real” conversations about the hardships of being a mom. If someone were to over hear us I think they would be mortified. Lindsay and I don’t sugar coat ‘momhood’. My parenting “reality” was, and still isn’t, what I thought it was going to be. I know all to well those days (years) of waking up at 6 am and already being on empty! Thinking you’re not gonna make it one more day. You will. There r better days ahead. Hang in there.

    • Thanks, Heather for the encouragement. It is truly sad that there is such a stigma with speaking openly about our trials with raising our children. I wouldn’t be mortified at all about your real conversations 🙂 I wish that women would stop being so critical of one another and instead support them, no matter what choices they choose to make. Thank goodness that there are many supportive women out there that we can rely on.

  4. Hi Ashley,
    We’ve never met formally but I am her Occupational Therapist friend from Montreal! Our first son sounded similar to Maddy…allergies and extreme fussiness. Stroller rides, car rides, sleep time were all so challenging and nearly impossible. Most of my friends will remember his intense need for deep pressure swaddling and his 29 minute naps and white noise machines..they were shocked and amused at our need for duct tape to keep enough pressure on his swaddle blanket when he was already 4 months old. I still remember while all the other babies at my first mommy group were lying on their backs cooing at their mothers…my son was on his tummy inching towards stroller wheels to try and figure out how they worked. His mind and body worked overtime and many times this was too much for him.Feeling isolated from most friends and especially family was what hurt so much. He too was better in public probably because we were constantly holding him and bouncing. It probably also had to do with the fact that he was such an alert interested child. I cried reading your blog post because 6 years later your words and descriptions brought everything back. I would wake up revitalized but would hear his first cry (one of a thousand) throughout the day and my heart would sink. I too blamed myself even though deep down I knew it wasn’t me…I just couldn’t convince those around me that my son was different. Funny thing is, when his colic started to subside at 9-10 months…being fully gone by 15 months I was a new person. 6 years later, I still have family members telling me I was a different mom, and didn’t let them hold my son enough. I was just trying to survive… I wasn’t thinking about how often other people held him. My son was so different from other babies.

    The great news is that our son did grow out of the extreme discomforts and most allergies. He continues to have some eczema and some sensory sensitivities but they don’t hinder him. He is a normal developing 6 year old who doesn’t love certain sensory stimulations like kisses on his neck, and big scratchy tags in his shirt. He loves to wrestle, dance and jump ( which helps him get the proprioception he needs). He still has a very sensitive vestibular system so is wary of many fast rides at amusement parks and very high swinging (which now explains his constant screaming in his stroller,car and stroller as a baby). He is now starting to push the limits of his vestibular system and can swing higher and spin longer and faster than ever before. He recently attempted two big roller coasters at Disney World. He is doing great in school and socially. He is still headstrong and can get cranky easily. He is also extremely bright, curious and caring.

    Hang in there, sensory processing is ever changing and is not static. What is true today for your Maddy, will not be tomorrow. Sensory processing is a dynamic process.

    I recommend these books to help others develop a basic understanding of Sensory Processing by a leading researcher in the field.
    1) Sensational Kids: Hope and Help for Children with Sensory Processing Disorer by Lucy Jane Miller Ph,D., OTR
    2) No Longer A Secret: Unique Common Sense Strategies for Children with Sensory or Motor Challenges by Doreit S. Bialer and Lucy Jane Miller

    As an Occupational Therapist I am seeing more and more the importance of screening babies in the Infant and Toddler Sensory Profile Questionnaire by Winnie Dunn. This needs to be done by a trained Occupational Therapist but can be pivotal in explaining why their baby is responding this way. I am personally beginning to believe that after food intolerances, sensory processing is another piece of the puzzle of colic..of course this has yet to be proven scientifically.

    I look forward to meeting you and Maddy in person one day soon. I would like to repost the content of this blog post to our milk intolerance website and possibly my Occupational Therapy website. Let me know if this would be alright.

    Take care and thank you for being so candid in your post.

    Cynthia Miller-Lautman
    Pediatric Occupational Therapist
    Beaconsfield, QC
    http://www.cynthiamillerlautman.com

    • Hi Cynthia,

      Thank you so much for your response. Even though day to day is still challenging, my mindset is so much more positive after sharing what I was feeling, and hearing from others with similar experiences. Though it makes me sad to think so many others have had similar experiences to mine, I am so happy to hear how well your son is doing. Thank you for the book titles as well. I will definitely get a copy of both of them. Feel free to repost the content of my blog – my hope is that it will help others who are going through what we did in finding some answers. I’m going to put a link in my post as well to you, if you don’t mind. I hope the next time we’re down in Montreal visiting that we will be able to visit with you! I can’t even articulate how thankful I am that you provided the sensory profile to Lindsay. I have no idea where we would be if you hadn’t.

  5. Hi Ashley, I’m a teaching friend of your mom’s. My son also has sensory processing disorder and cried for the first nine months of his life. Do not dispare it does get better and we can now look back and say we survived. The worst night for me was when I had about 2 hours a night of sleep for about a month and I wanted to shake him to be quiet- just be quiet!!! I NEVER thought I would ever contemplate shaking my baby but it is hard to hear you baby cry for hours day after day and there is nothing you can do!!! OT really helped especially brushing and compressions-you can ask you sister about that. If you need to talk to someone who has been there ask your mom for my phone number. Terri Davies 🙂

    • Thank you so much for your encouragement. I feel so empowered hearing from others who have had this experience and survived. It is also helping to normalize the feelings I have been having all of this time. I am looking forward to starting Maddy’s therapy and for some brighter days ahead 🙂

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