To say that my little girl loves her mama is such a huge UNDER-exaggeration, it’s almost funny… almost!
I’ve alway been a very independent person, and growing up, I would often say that I NEVER wanted to have “clingy” children. I wanted my kids to be able to easily play with other kids, to love having a baby sitter (we had amazing baby sitters growing up and really did love them), and to look forward to time away from Mom and Dad.
And while I know Nora is not quite 2 years old yet and still has a lot of growing up to do, her ultra-clingy, needs-her-mama-ALL-the-time personality has made these last 2 years pretty challenging for my overly-independent self.
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Life with Nora has been a struggle for me from the moment she was born.
In fact, I can still vividly remember laying in my hospital bed that first night. She was hardly even 12 hours old when the nurse brought her to me saying, “we can’t get her to stop crying; I think you should just hold her for a bit.”
The moment Nora reached my arms, she stopped crying… and although I was exhausted, I remember feeling such a huge sense of pride that my baby “knew” her mama.
And then the same thing happened the 2nd night in the hospital. I was so tired from not sleeping much the night before, and I could tell the nurse felt horrible — but Nora just would not stop crying.
Then we took Nora home, and after relentlessly trying to “force” her to sleep in her crib, in her swing, in her carseat, or in her bouncy chair, we quickly realized that everyone slept a whole lot better if I slept on the couch with Nora on my chest (and to this day, that is still one of the easiest ways to get her to sleep.)
She’s even figured out how to adjust and make room for the new baby 🙂
Over the next many months, I came to realize that Nora was one “special” baby. She loved her mama more than most babies — and not necessarily in the cute cuddly way you might all be envisioning.
Picture endless screaming any time I left her with Dave or with her grandparents for short periods of time. Picture violent fits any time I took a shower, went to the bathroom, or even left the room while she was awake (even if another grownup was playing with her).
Neither Dave nor I had much parenting experience (a.k.a. we had NO idea what we were doing) but it didn’t take long for us to realize that her behavior was NOT normal — especially as she got older and nothing seemed to improve.
We tried getting involved in a couple play groups, interacting with some neighbor kids, and inviting other kids over to our house; but Nora would just freak out and cling to me the entire time.
We tried regularly leaving her for very short periods of time with close family and friends; but we would always come home to a snotty nosed baby who was so exhausted from screaming, that after a while, I didn’t enjoy myself when I was out. Thankfully I’m a major home-body so I didn’t feel trapped staying at home — at least in the beginning.
It was so bad that we couldn’t even put her in nursery at church because her screaming was disruptive for the other kids and super overwhelming for the adults.
Yes, this cute little face is only THAT happy when she’s with me 🙂
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After 17 months of almost never being away from Nora for more than a couple hours (and starting to feel like I was literally going insane, losing my whole identity, and failing miserably at parenting) I learned about a new therapy program that was much more economical than our current therapy program and much closer to home.
We started the following week and one of the first things the therapist told me was that Nora was SUPER high-needs and had major sensory issues.
Seriously, I had talked with numerous doctors and therapists and no one had ever told me this before.
Our new therapist sent me a link to an article: 12 Features of a High Need Baby — and I read the entire thing nodding and saying “yes”, “yes”, “yes!”
If you don’t feel like reading the entire article, I’ll sum it up for you — High Need babies are NOT like other babies.
They are (as the article states) intense, hyper-active, demanding, and completely draining.
They feed frequently (like ALL the time!) and awake frequently.
They are unsatisfied, unpredictable, unable to self-sooth, and super sensitive.
They require constant attention, they don’t like to be put down, and they have severe separation anxiety.
So for those of you who know Nora — or for those of you who have read my blog posts about her and about motherhood these past 2 years — does any of this sound familiar?
It’s like that article was written specifically to describe Nora!
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I hardly finished the article before I yelled for Dave to come read it too. We looked at each other after he finished reading it, and it was like a light bulb went off.
We hadn’t royally messed up. We hadn’t ruined our child. We hadn’t failed in our desperate attempts to implement the (mostly) well-meaning suggestions from friends, family, doctors, therapists, and parenting books.
After 17 months (and for the FIRST time since Nora was born) we finally realized that we were not horrible parents. We just had a “horrible” child 🙂 (said in jest, but also kind of true!)
While Dave and I breathed two humongous sighs of relief, I continued to scour the internet for more information about high-need babies — and of course, we continued our therapy program.
After two more therapy sessions (with homework in between) we could already tell a big difference. The difference was so obvious that our therapist told us to take a couple months off (yes, after just 3 sessions total) and just work on the homework exercises she gave us over the summer.
So for the past couple months, we’ve been rubbing and massaging Nora’s skin with a special “brush”, and Nora has been listening to special music on her headphones — isn’t she cute!
These homework assignments might sound like nothing — and yes, they are super easy to do — but I can’t tell you the difference they are already making in our lives.
There is a light at the end of this long tunnel!
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These are the changes we’ve noticed in just 3 short months:
1. Almost immediately, she started taking daily naps (she never took naps before). It’s still not great, but I’ll take 30-45 minutes over nothing any day!
2. She cries SO much less — around us and around others.
3. She was able to stay home with Dave for large chunks of the day this summer without getting anxious or crying for hours — this might sound ridiculous, but it’s a big accomplishment for us.
4. At 18 months, she finally started accepting people food without throwing up or freaking out (she refused all baby food, people food, formula, and even breast milk from a bottle before this).
5. She finally stopped nursing completely after 21 very VERY long months (this is a long story for another day, but I did write about it eventually.)
6. At 19 months, she made it through her very first church nursery with no tears!
7. At 20 months, she sat on my grandparent’s laps voluntarily (she’s been scared of them since birth)
8. She has let Dave put her to bed twice now — which means there is hope that I will eventually be able to attend evening functions like meetings and social events (if anyone ever invites me out again!)
9. As of a month ago, she is now OK with Dave comforting her in the middle of the night — which means we can share the sleeplessness for a change 🙂
10. She has been more willing to play by herself and much more willing to interact with other kids (as long as I’m still around)
11. She willingly and excitedly plays with our 9th grade neighbor girl (who loves babies) even if Dave and I are inside or in a different part of the yard.
I realize that those of you with “normal” kids must think we are absolutely insane (believe me, sometimes we feel insane) but this is huge, HUGE progress for Nora and for us.
Although we still have a long way to go (like the fact that she still wakes up several times EVERY SINGLE night), just knowing that we’re making continual positive improvement is so reassuring.
I finally feel like I can live my life (or at least a few hours of my life) without worrying over how difficult Nora is being for Dave, for our parents, or for a babysitter.
I no longer have horrible dreams about what Dave would do if something ever happened to me.
I no longer have tons of anxiety about Sunday mornings, family gatherings, or outings with friends.
I no longer feel completely trapped and suffocated.
I no longer feel like I have to do everything alone — Dave can FINALLY help with childcare, mealtimes, and late nights.
I don’t think I have to tell any of you how amazing it feels!
So with a 2nd surprise baby on the way, I can’t help but wonder if he or she will be super high needs like Nora, or if we’ll actually get to experience what it’s like to have a “normal” infant in the house.
Of course I hope that our next child will not be a high need baby — but if he/she is, I know it will be easier than it was with Nora. We’ll be able to detect the signs, we’ll start therapy MUCH earlier, and (most importantly) we won’t feel like complete parenting failures for 17 long months.
Yes, our little girl is healthy, happy (most of the time), cuter than cute, and full of life. She makes us laugh all the time — and I mean REALLY laugh. I also realize that compare to some families, our “issues” are teeny tiny. I suppose it’s just different when you’re living it every day (and every night!)
I’d never give Nora back… but sometimes I wish we could have those first 17 months of her life back to do over again.
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After reading this post, if you feel like you might have a high need baby, please know that there is NOTHING you did or didn’t do to make your child that way. Also, don’t be afraid to ask questions and seek help — I can’t tell you what a transformation our therapy program has made in our lives!
Margret says
How exhausting! So happy for you that you’re finding some relief. Good luck for more progress 🙂
Rebecca says
One of my boys was similar to Nora, just not with all those traits, but quite a few of them. He was my fifth, and since he was my fifth boy, I knew there was something different about him. I had no idea there was therapy for his issues until I spoke to a friend who told me about some of her sons issues and how she was taking him to occupational therapy. I was so excited that there might be help for us! I was amazed at how after a few sessions, he was dramatically improving. He is eight now, and except for certain situations, he does really well. I am so happy for you that you found some help, it makes such a difference!
And like another poster said, I feel like if I ran into you at the store, you would be so fun and easy to talk to! Thanks for posting this, you are an amazing woman to do all you do and still be an awesome mama!
Juds says
Bless you. I have a special needs child who has done well, has two special needs children and has recently returned to college, something that was to o difficult and frantic for her even with the support of a great therapist.
This has been, and continues to be, the best experience, full of love and struggle and triumph after triumph. Yay!
Lisa McCall Borders says
My first was EXACTLY like this…I thought I would go insane! However, I have four children now…two of them high need, and I can tell you that it is often a sign of giftedness. My two are extremely gifted, musically and intellectually. Apparently, highly intelligent children are born with very very discriminating tastes about everything… I often joke that mine came into the world “barking orders and smoking a cigar”…lol. Their temperaments have always been difficult, they don’t make friends easily, and they tend to be morose and kind of negative, BUT they are so amazingly talented and independent now that they are grown, and I enjoy their company immensely. So…every dark cloud has a silver lining. Hang in there! And I can almost promise you that the second one will be exactly the opposite…mine came into the world smiling, rarely cried, slept well almost from birth….I never got over the difference. Hope you have that experience too!
Crystal says
Well, unfortunately I got two in a row that is just like Andrea is describing haha! My first child was as independent as you can get. However, my middle child and third are considered “high-needs”. I hope for her sake or anyone’s sake they can get a break in-between and have an easy baby! Sleep is something I took for granted with my first child. I haven’t had a 8 hour stretch in over 10 months.
Library Momma says
I am reading this as a former occupational therapist saying yes, yes, yes, each time I read something you have described. Nora may never “grow out” of her sensory needs or behaviors, but they may lesson substantially over time to where only you or her may notice. We ALL have sensory needs, some people don’t like turtle necks, some people don’t like the textures of certain foods, etc. Don’t ever feel you failed her or wasted time, you were just learning about her, her needs, and in many respects her body chemistry and what makes her tick (or doesn’t). Your doing great, keep it up, also consider a weighted blanket for nap time of bed time it can be very calming.
Janet says
I know exactly what you mean by that special brush. Ours was yellow and an occupational therapist taught us (read me) how to use it on our then 5 or 6 year old son with autism..It took that long to reach that stage. He was super clingy, I was his “tool”, from infancy to get what he needed/wanted. For 3 years we were blamed. He was climbing the walls in the pediatricians office, the one with the big desk, and throwing down the wooden toys he had there because I parented him differently than I did my also clingy (jealous clingy) 21 months older daughter. I could have, and come to think of it, did scream and cry so much. Sleep issues–I so get it.
I’m so happy for you to have gotten this knowledge before the new one arrives. Best wishes.
Janet
Kelly says
I must admit, I am not much of a kids person and I don’t plan on having any children myself. However, I find myself still reading all your posts especially the ones about Nora. This was highly informative and lately I have been enjoying information like this. I had NO idea that there were such things as sensory issues, high needs kids, etc. I think, with all my friends, cousins and siblings having children, it’s important for me (and other “non-kids” people) to understand the certain situations parents can be going through. I don’t want to miss out on good relationships because of a misunderstanding.
Great read and I know it probably took some courage to write! Think of all those who you will help understand their child going through similar issues.
I am glad Nora is doing well!
Jen says
Your excitement in this post is “palpable”, even in Maryland! 🙂 I never experienced what you’ve gone through–my kiddos were in the nursery from about 2 weeks old because dad was a pastor at the time and we were always at church–but I’m so thankful you’ve gotten some answers and some relief. We have friends who have similar therapy (brush, massage) with their son and it has worked wonders for them as well.
Praying that things continue to improve and that Dekker #2 is a relaxed and peaceful soul! 🙂
Blessings!
Debbie says
You are the BEST kind of parent! You did whatever you needed to do to keep her calm, but were still able to see something was very, VERY different. Our son has Sensory Processing Disorder as well, but he was the opposite. He would only tolerate being held for bottle time (didnt want to nurse so I pumped). We knew something was truly different at about 6 months. His pediatrician didnt recommend him for therapy until after 12 months. During this time no one could hold him. He lived his first year of life in his swing or crib. It was heartbreaking, as his Mom, to have him scream everytime I tried to hold him. I finally got my first hug from him 2 days before his 2nd birthday in the middle of Costco! I will never forget that day! Well, after therapy and lots of “brushing” (that has been the key for our son!) he is now 4 and LOVES to give me hugs and snuggle! Sometimes I hold him like a baby as he snuggles and I tell him how he never used to like it and he says, “But I do now!”. So happy to hear the therapy is working for Nora! We have a vlog documenting some of our ups and downs (which I put in the private section above) if you want to check it out. There are also some wonderful parent support groups for SPD on Facebook! They are wonderful to bounce ideas off, get advice and share experiences. Thank you SO much for sharing such a personal detail of your life with us!!!
Stacy says
Baby #2 was a high needs baby and I remember spending so much time trying to figure out what was wrong and I finally stumbled across this information online and breathed a sigh of relief. She was a preemie and everything was different and challenging. As time went out we found out she also has sensory processing disorder. She’s five now and is an extremely clingy child who still needs her mama. I love her more than anything, but it is very hard sometimes to have a child who needs you that much all the time, even when other people try to give you a break. You guys seem like good parents and I wish you the best with baby #2. Thanks for sharing this story because lots of people go through this and you sometimes do feel all alone.
Jennifer says
So happy for your family! I applaud your courage and persistence in seeking help for Nora and you and Dave as well. Realizing that you are not doing anything “wrong” must have been a HUGE relief! As a former first grade teacher, I seen many children with problems whether it was learning, social or emotional. Sadly, some parents don’t want to admit that their child has any kind of a problem and won’t allow their child to get help. Being a parent is not easy and again, I’m so happy that you have found resources that help ALL of you! All the best!
JoDi says
It’s really good to hear that you’ve been able to find something (besides you!) that helps Nora feel more comfortable in her world. When all the standard advice doesn’t work, there’s something bigger going on, and at least you kept looking until you found out what it was. Sometimes the journey to figuring it out is a long one, and I often wonder how many people were never able to figure something like this out before the wealth of information we now have on the Internet was available. This blog post alone will probably help many more people than you can imagine in the years to come.
You also mentioned in a reply to an earlier commenter that having this experience has made you less judgmental, and I just wanted to say that the difference is noticeable. I’ve been a reader since before you were pregnant, and the tone of your blog posts has changed since Nora was born, and you clearly have become a more compassionate person. So many people are struggling out there and just need some encouragement to continue each day so I hope you’ll be able to continue to blog even after Baby Dekker #2 arrives!
Andrea says
Thanks JoDi — and yes, I know you’ve been a SUPER long-time reader. I really appreciate that 🙂
Tara Ziegmont says
I just read the article you linked to with the 12 features, and it would appear that both of my kids are high needs. So maybe there are “normal” babies, but I didn’t have one.
Just wanted to stop back and take that part back. 🙂
Andrea says
haha — yes I do read ALL the comments 🙂
And while I totally agree that all babies (just like adults) have their difficulties, I definitely DO think there are “normal babies” I know because all my friends have them 🙂 Their babies are all relatively similar in just about everything (sleeping, eating, crying, self-soothing, playing, etc. etc.) and then there’s Nora — so completely polar opposite. Seeing my friends’ babies (many of whom are within a month or two of Nora’s age) is actually one of the main reason I KNEW something was not right with Nora. Something we very very different.
I dont’ expect our 2nd baby to be perfect (although wouldn’t that be lovely) I’d just really like he or she to sleep through the night by 2 months old. Seriously, If I have ONE goal for this next baby, it’s that they sleep. a lot!
Tara Ziegmont says
I really hope you read all the comments because I feel like I have something to say just to you.
There is no “normal” baby. Truly, your second baby will have quirks and personality things that will frustrate and overwhelm you, too. That’s not to minimize the struggles you’ve had with Nora, but to try to prepare you for whatever will come.
We, too, have a high needs first child with sensory issues (now 6 and also exceptionally gifted, which may pop up for you later) and a surprise second child (who, as it turns out, is very high spirited and also a big challenge to parent). Please understand that you are going to struggle A LOT when your second baby is born, and Nora adjusts to not always being the center of attention. Make arrangements now to have lots of help – friends, grandparents, neighbors, even that teen next door – because you’re going to need it in those first three months. I didn’t have any help at all, and I suffered greatly (!!!) because of it.
I know we’re total strangers, but please email me if I can offer you any other advice. I’ve been where you are (except that mine are 3.5 years apart, which probably made it easier in the big picture), and it was so hard.
Sue@House Pretty says
Girl, I SO feel your pain. We had a child EXACTLY like that. She had acid reflux when she was born, which didn’t help one. little. bit. Heck, I didn’t even enjoy being a mother, because she robbed my husband and I of “our” time. And I waited for this chid for 9 1/2 years! Many, many times, I have wished we could have a redo, with a “normal” baby. I missed that…I wanted a baby so badly, for so long. And then I get one, and all she did was cry, a LOT! To this day, she is very moody, and has a bad temper. However, we are getting that under control, now that my husband is on the same disciplinary “page” that I’m on. Our daughter turns 6 the end of September.
Andrea says
Well, I can’t relate to the infertility, but I definitely CAN relate to not enjoying motherhood. I seriously hated it for the first MANY MANY months. Then I realized there was something wrong with Nora and that it wasn’t all totally my fault. ALthough it still didn’t make everyday fun, I could enjoy it a little more.
I’m also not a “baby person”. Give me toddlers or preschoolers any day — but no babies… so I’m sure that didn’t help either!
Naomi says
Your post was beautifully stated. I had 3 high needs children with a high needs husband and I didn’t know it at the time. Read every book, implemented every trick I could with my first child who I felt had much more going on than the other two and unfortunately they were diagnosed later in life. The first child has bipolar with schizophrenia tendencies. The second child has severe combined type ADHD. The third child has Aspergers. All three are young men and I love them with every fiber of my being but there were times when I did not like the first two. Especially the oldest. The ex husband was bipolar with sociopathic tendencies and divorced me when I pursued graduate school in counseling. My mother is also bipolar and high needs. I’ve gotten myself evaluated several times because I thought I was the “crazy” one of the bunch.
Its a blessing you have support, and a therapist who knows his/her stuff! Don’t spend time on regrets be thankful for what you can do now. I admire all that you and your family has done with your beautiful child. I love reading your posts because they are entertaining, informative, and genuine! I feel like if I met you at a store I could start up a conversation with you easily. Thank you for sharing something so profound and personal to help educate others who may be going through similar situations!
Karen Davis says
I just got “chills” when I glanced at Nora’s middle name…Faith….! Mama, you are doing an amazing job, and thanks for sharing your journey….I also had no idea, that you were dealing with so much. I too, say God bless you, and the best is yet to come! Well, done, you are doing your best! Thank you so much for sharing your life, and story with us…Sincerely, Karen
Andrea says
Yeah, crazy huh! I’ve thought of her middle name many times — it was just supposed to be named after my mom’s middle name (Faye) but it is quite fitting!
Lis says
I, luckily, can’t relate to the high-needs stuff (well, maybe my first-born a little bit but I’ve always just blamed that on not knowing what the heck I was doing). But I can relate to being a good mom. 😉 I just want to say that Nora is lucky to have you for a mommy. And I will add myself to the list of moms who had a much more laid-back second baby.
Melissa Campbell says
Has your therapist or dr said anything about diet? It seems that dietary changes like GAPS diet and staying away from gluten and sometimes dairy can help with these types of conditions. I know my child has behavioral, high needs issues and have been managed a lot through diet and supplements like fish oil and probiotics. My heart goes out to you for the hard times you’ve endured. Glad to hear there has been some light at the end of the tunnel. God bless you and your family!
Andrea says
Well considering it was a HUGE 20 month struggle to actually get Nora to eat anything — we’re just taking things one step at a time. There are still very few foods she will eat… and if she doesn’t eat those, then it’s back to breast feeding (and I’m not willing to go back there!) So we’re just feeding her what she will actually eat for now. We might look into diet issues in the future once we rule out some other things first.
Kjrsten says
The most wonderful part is the discovery. It wasn’t until our daughter was three years of age when she was diagnosed Developmentally Delayed. The label may not seem like something to celebrate, but when you are searching for answers and know deep inside that something seems out of place with your child, that label signifies an end to the torture and the beginning of an extraordinary journey. May I suggest you read ‘Welcome to Holland’ by Emily Perl Kingsley. It describes my world perfectly.
Best of luck to you, Dave, and Nora.
Always keep searching.
Hannah says
That’s great news. You are such an awesome mum 🙂 Yep, “mum”, writing from the other side of the world here 😉
You are doing such a great job with Nora, you should be very proud.
Melinda says
This was such an amazing post to read–my friend has a son, who is the same age as my daughter (4.5 years) who was exactly like Nora is at her age and how she was as a baby. My friend had so many people telling her she was doing the wrong thing as a mother and she was messing up her child but, truly, I have never seen a more devoted mom than my friend. I really wish the therapy program you referenced was available to her as it sounds like it has made a world of difference.
Oh, and as a footnote, my friend had a second baby who is the calmest, most laid-back child I have ever seen!
Andrea says
Thanks Melinda, here’s hoping our second baby will be a bit easier!
Kim says
This is the first of many ah-ha’s you will have, realizing your kids are who they are and you aren’t defective parents. Isn’t that the challenge for all of us: to try to speak and respond to accommodate the other child/person? So much easier said than done. My first (boy) wasn’t nearly as challenging as Nora, but it was similar on a smaller scale. My second (girl) after 2 miscarriages, is a pure gift. Easy going and happy all the time and a big sleeper. Opposites in many ways. Mom is still the best job in the world…
Andrea F. says
I know your struggle all too well. My baby girl, now 10 months old, had colic for the first 3 months and she is a high needs baby like Nora. She is our third child so that has made it even more challenging. I have grown to love my Ergo carrier and just resigned myself to always being with her at least until she weans (she still nurses every 2-3 hours). I will definitely talk to our ped about possible therapy, is there a specific therapy I should mention?
Andrea says
Maybe just sensory processing therapy and anything for “high-need” babies. I’m honestly not sure. I know a lot of kids who do the therapy Nora does also go to speech therapy — but so far, Nora has NO problem with speech 🙂
ferrell downey says
I’ve read you several times mentioning how “difficult” Nora needs can be, but I had no idea it was anything to the level you just described. What a surprise to find out you’re having another child! That’s is great news! I gasped when I saw your bump photo. Congratulations! And so glad you found out there is a therapy specifically for Nora’s needs! 😉
Nicole says
I am a pediatric occupational therapist and have treated many kiddos similar to Miss Nora. I am so glad to hear that she is doing well in her program. I have had success with helping my little ones sleep when using either a weighted blanket (I make my own) or squezzy/ compression sheets. Of course, check with your therapist first. Nora is very lucky to have such attentive and proactive parents!
Ivy says
I am so glad you were able to find some answers and get help. Our first child had colic so bad she screamed for 6 mths . I knew I was in for it when like you the nurse came to me in the middle of the night saying they couldn’t get her to settle down would it be ok if they gave her a pacifier, I had asked them not to because I was nursing. After I ok’ed it they gave her one dipped in sugar as soon as the sugar was gone she spit it out and kept on crying.
I thank god that she was our first baby, I knew after going through that I could do anything. Of course DD2 had ear infections over and over and never slept through the night until she was about Nora’s age. DS3 well he’s a boy and thats a hole different ball game.
I guess my point is they are very different and come with their own challenges. Nora has made you and Dave stronger and God has blessed you with another one to love you’ll do great!
Andrea says
Thanks Ivy,
Yes, we’re definitely not expecting a perfect baby #2… just maybe one that sleeps 🙂
Tara says
Oh this is SUCH EXCITING NEWS! Praise God! He is giving you rest and reassurance.
Every parent has their set of struggles. Some have ill, or high needs children and for some of us moms, the high needs person ends up being ourselves. There are so many variations of difficulties in child rearing. You’ve been dealt a pretty hefty set of difficulties though. And you’ve been handling them with grace, faith and diligence. God has laid out our paths and desires us to bear much fruit. Your dedication as a mom to bring Nora to treatment for her struggles honors His wisdom in entrusting her to you and Dave.
Your prayers haven’t been bouncing off the ceiling. Your exhaustion hasn’t been in vain. And you most certainly have NOT been parenting failures. Never were and never could be.
So many blessings over you as you continue and grow together with your sweet girl. I can’t imagine a more perfect match for her need for structure, schedule and stability. You’re a parenting hero.
Andrea says
Thanks Tara — and honestly, you’re SO right. Nora absolutely NEEDS parents with lots of structure, parents who like planning ahead, parents who are prepared and don’t just “wing it”. Dave and I are constantly trying to plan ahead so that Nora is prepared — for Nursery, for special outings, for grocery trips, etc. If she’s not prepared and if we aren’t organized, things are MUCH worse.
Janice says
I did not know you had so much trouble with even though I have read your mom blogs. When I first started reading this today, I realized Nora is very similar to one of our granddaughters. When our Katie was very young, her baby crying was the most shrill, ear-piercing I had ever heard. As she grew a little older, we thought it was amusing that she would not let you hold her hand nor even touch it. Then, she refused to crawl, in fact, she could not crawl because of the sensory issues. That’s when our son and daughter-in-law found out about her sensory issues through their pediatrician who was also their friend. My daughter-in-law began taking her to therapy and Katie began to improve. I recall that the therapist gave her a big rag doll to take for homework. I don’t know everything that was involved with her therapy, but she had to go for about 3 years. She is 10 years old now and is a real delight. She has been in gymnastics and dance classes and on a swim team, plus horseback riding here at our house. However, she still has health issues with digestion and is manifesting signs of not being able to calm herself again when being frustrated by homework after school. She is now being tested for a genetic mutation issue called MTHFR which has a treatment. Oh yes, she has always been an early riser, like 5:30 in the morning. 🙁 Anyway, it is real interesting to hear of other families who have children with these sensory problems. I think this runs in our family as I know our daughter has always been high maintenance and I believe I have manifested some sensory difficulties. Our daughter and I have insomnia and are unable to stop our brains from racing so we can go to sleep. We have problems with depression and migraine headaches. High maintenance becomes an issue which can continue even into adulthood and I hope and pray you all are able to find deliverance for Nora and your family.
Jill A says
Hi! Loved your article! Can you tell me the name/type of therapy you found that works??
Also…wondering why it made such a big difference??
Thanks again! Loved it!
Kim says
BLESS YOUR HEART!!!!!!!!!!!!!!!!!!! This sounds like it has been tough with a capital T! Parenting a challenging child can certainly make us feel like failures. All those people who get “easy” babies the first time around better watch out. God has a way of letting people get comfy, confident and prideful………..and then sending them a doozy of a child. You and Dave have hung in there, hung onto the Lord, and hung onto your fragmented sanity. Wow! I am praying that there are continued improvements with this therapy…..and that this next baby does not have this level of sensitivity.
You guys have done a great job under very difficult circumstances! What a team you are!
Sari says
I got tears reading this post, because I’ve followed your blog since before Nora was born and I know how it’s been a really hard journey for you! So I’m thanking God with you that you have some answers now and that there is improvement! Keep up being the great parents that you and Dave are!!
Nancy says
Our son (our first) was like Nora. As an infant we couldn’t put him down, he wouldn’t sleep, and we couldn’t take friends up on their offers to babysit for fear that they’d never talk to us again. Took many, many tries for intervention before I was finally able to “mama bear” him into speech therapy when he was 3 and the speech therapist referred us to the wonderful world of OT! Believe it or not, I had forgotten about the brushing we did!! I chuckled at the earlier comment about being a teacher and not wanting to put my child on meds, but when he tested in the 92% for ADHD, I had to at least try, for everyone’s sake. We worked with a child development specialist at our children’s hospital, and implemented meds along with behavior techniques. We didn’t advertise that he was taking meds, sometimes not even telling the middle- and high-school teachers, because he didn’t want to be labeled and I didn’t want him to use his challenges as excuses. He is now 21 and a successful junior in college! There are still sensory issues (he abhors brushing his teeth!) but the joys and triumphs far outnumber the struggles!
As a not-so-side side note, I’ll parrot what others have said about enjoying your blog! It’s part of my after work routine and I’m always anxious to see what’s new.
Monique says
Yes! Yes! Yes! My high needs daughter is now 18. Do you want to know another sign this is about? Gifted. Most children who are high needs will be as students also “high needs”. Do not let this scare you. Sometimes they will be labeled as having learning disability when actually it is the opposite. My 18 year old still has trouble sleeping, still has sensory issues BUT she has learned how to manage it all while being in a gifted high school program.
My daughter was diagnosed at age 4 with ADHD. Lucky for me, my pediatrician thought this was crazy! He gave me information about Feingold diet which is removing dyes, preservatives, etc. from her diet. I started cooking as much as possible instead of processed foods (“boxed dinners”). There is a website about his beliefs and diet (Feingold). I learned how to make my own chocolate syrup from his recipe book.
Shelly says
Thanks so much for sharing! I have been so lucky to have three easy babies. I enjoy the baby phase so much!! Maybe you will get that this time around. 🙂 However, having said that, my son (the middle between two girls) has been acting out since he was about 18 months old. He’s five now. At first, we laughed it off and said that the “terrible twos” struck our house early…and then they lasted extra long. But now he is five, and literally everyone knows us from church, school, sporting events, everywhere our family tries to go. We are seeking help at this point. He still gets up every night and comes to our bed. He doesn’t sleep much. He is socially immature, but very intelligent. I believe he is ADD, but as a teacher, I have always said that I don’t want to medicate my own children. It has been a long five years and as you can imagine, kindergarten is presenting problems. Thanks for sharing your story and providing encouragement to keep seeking help.
Stacey says
I did the brushing and listening therapy with my 8 year old this past spring – sensory issues that got worse over the course of two years, the poor girl couldn’t wear jeans (basically any pants) or socks without major issues and tears…not a good way to start the day before school, and I felt like a horrible mom because it tested my patience SO much. She also has some major muscle coordination issues – couldn’t bike, run “normal”, swim or even tie her shoes. After three months of therapy all of her issues were gone and she became a much more independent, outgoing and confident little girl. I am SO grateful our occupational therapist suggested this therapy for her. I’m so glad you have found success with it as well 🙂
april says
My 8 year old daughter was also recently identified as having SPD. We have tried the brushing, but she hates it and fights it. She felt as if it made her more different from her peers and interrupted her play. Did your child have issues with brushing? Do you have any advice to making brushing an older child less of a battle? Were you strict on the every two hour part?
Andrea says
Hi April, I honestly don’t have any great information for you — sorry!
We’re pretty new at this too and I personally have no experience with older children. Nora was only 18 mo. when I was doing the brushing so she didn’t put up much of a fight. I just made it into a game and she liked it after the first few times. I was not super strict with doing it every 2 hours, and we actually don’t do the brushing anymore.
I hope your daughter’s SPD improves with the brushing — we did see lots of improvements!
Suzanne says
I understand completely – my 2nd child had tactile issues isolated to her fingertips (as in no mittens, no typical hand-holding – more like palm pressing) and her articulators (lips, tongue, cheeks, oral mucosa). Her sensory input did not discharge neurologically, and we quickly got her involved in New York State’s early intervention program. She had a speech therapist and an occupational therapist. We did the brushing – I didn’t believe it when they kept reassuring me that at one point she would actually recognize when she needed it and ask for it. She screamed and thrashed throughout the brushing which we had to do many times a day – pure torture at the time, but gradually improvement was shown. Eventually we were down to brushing on waking and before bed, then not at all. I was stunned but smiled when she would have an overly finger-tactile day and bring me the brush, asking “buss me peez”. She had trouble with dischordant sounds for a few years, and grew into being able to play percussion in band – go figure! She could actually hear security systems in stores – high pitched screaming with an arched back while crossing the threshold. It took us a while to figure that one out. Fluorescent lights do still disturb her, but it’s not intrusive. She’s a perfectly well-adjusted 15.5 year-old now. There is hope, and despite the incredulity of it – brushing HELPS!!
Leanne says
it took 3 1/2 years for someone to finally recognize that our son had significant sensory issues and definitely classic ADHD…we had lots of bad parenting advice, and I could have kicked myself over not following my mama’s instinct…
he’s much better now after a year of occupational therapy (including BRUSHING!)… I’m so thankful that you are on the right path 🙂
your blog is one I read DAILY and I really missed your posts in August…
you a re a very inspirational woman! thank you!
Tracey says
Thank you for sharing! My 2nd is a boy and high maintenance. He nursed almost continously as soon as they brought him to me…. he nursed so much that my milk came in on day 3! He would scream and cry every time I moved away from him. He nursed like crazy until he was about 15 months old and then just stopped! He was a voracious eater and still eats just about everything….with gusto and speed.
It was a long long struggle and I delayed for over 3 years before even contemplating another pregnancy. I had one month where I thought I might be pregnant (he was 18 or 19 months) and I cried the whole time I was waiting for the test because I just could not handle the thought of another child at that moment! 🙁
He slowly outgrew those early days and gradually came to enjoy other people and other situations but he still has an incredible amount of energy. Now he’s 9 and in 4th grade. School is a struggle due to the need to sit quietly for so long but we give him coping tips and his teachers are willing to work with us right now. We’ve changed our diets and that’s helped some. Giving him structure has also helped.
{{{{{HUGS}}}} from someone who experienced a tiny bit of your journey…..
Tragic Sandwich says
Thanks for sharing this! We’ve learned a little about a lot of different needs over the past year, and finally we have an ASD diagnosis for Baguette. Of course what everyone wants for their children is a “normal,” easiest-possible path–but we don’t all get that path. And it’s such a relief when you finally understand what path you ARE on.