Our Experience With a High-Needs Child (6 years later)

posted by Andrea | 09/11/2019

Exactly 6 years ago today, I shared a difficult post about Nora’s “high needs” personality and how much of a struggle the first 20 months of her life had been for me. 

I was nervous to hit “publish” as I didn’t want any more people telling me what I should do (or should have done) differently. Much to my surprise, I received nothing but heartfelt encouraging words from hundreds and hundreds of readers (and lots of strangers too).

Since that day 6 years ago, I have received some sort of comment, email, or Facebook messages almost EVERY SINGLE DAY… asking questions regarding Nora’s personality, sharing a similar story, thanking me for writing the post, or simply venting to an empathetic listening ear! 

It’s astonishing how many of you are struggling (or have struggled) with a high needs baby or toddler!

I never imagined it at the time, but I’m thrilled that one of my posts has offered so much encouragement to so many strangers I’ll probably never meet in real life!

So… What’s Our Update?

Fast-forward 6 years and I can honestly say Nora is just like any other typical child her age — with weird quirks, mood-swings, and personal preferences, but able to function appropriately in the majority of situations.

  • she easily interacts with other children and adults
  • she handles change and disappointment as well as any other child
  • she cleans her plate at every meal (even if she doesn’t care for one of the foods)
  • she willingly tries new foods without huge struggles or issues
  • she wears socks without a fit
  • she got her ears pierced (it was a HUGE accomplishment!)
  • she got her first pair of jeans (jeggings) last year and she actually wears them!
  • she gets her face wet in the pool and shower (she’s a total fish)
  • she hears loud noises without panicking
  • she finally made it through a full dental exam when she was almost 6 (it was rough, but she’s a pro now!)
  • she can get shots without 3 extra nurses in the room to hold her down (still fairly anxious, but we make it through)
  • she spends all day away from me at school with no issues
  • she occupies herself for extended periods with no “help” from me (reading, writing, playing, etc.)
  • she sleeps soundly all through the night, every single night!

 Can I get an Amen!?

What Made the Difference for Us?

Honestly, I’m not exactly sure — and yes, I know how unhelpful that information is! 

We tried SOOOOOOO many different things to get her to eat

We tried even more things to get her to sleep

We stayed home A LOT.

I tried to plan and prepare for every type of situation, meltdown, etc. any time we did go out. 

I eventually accepted the fact that she would be attached to me almost 24/7 for an extended period of her life (just over 2 years in the end).

.

An Added (and unexpected) Bonus… 

After so much trial and error, I learned many helpful tips, tricks, tools, and resources that didn’t necessarily help me right away with Nora, but have been invaluable throughout the past several years of parenting our 4 children. 

It’s amazing how often I think back to something I read, something someone told me, something we learned at therapy — then the ah-ha moment happens in my brain, and I’m able to solve an issue for one of our children with very little trouble, hassle, or tantrums. 

This is not to say my children are perfect or that I’m an amazing mother, BUT I will attest to the fact that my very steep learning curve with Nora has paid off exponentially with the rest of our children! 

Thanks, Nora ๐Ÿ™‚

Thinking back, I honestly can’t even remember exactly how tired, how angry, how frustrated, or how desperate I felt 6 years ago when I published my original post. Those horrible memories have been magically pushed from my brain to make room for happy and positive memories. 

It’s almost like I’m reading about a different family when I re-read many of my old blog posts from 6 and 7 years ago! 

Unfortunately, I know happy updates are not always the case for every family…

My intention for this post is not to “rub it in” to those who are still struggling with high needs children on a daily basis. Rather, I hope this update offers hope to those of you who are “in the thick of it”.  

It’s horrible. It’s crappy. It feels like it will never end… I know!  

However, even if it doesn’t end as quickly as you hope or pray it will, I have found that the situation often starts to FEEL easier because I’m learning and growing and adapting to a “new normal” along the way. 

The trial and error you experience now WILL eventually help you in some way, shape, or form, somewhere down the road of your parenting journey. 

Do you (or did you) have a high-needs baby or child?

What was/is most helpful for you? 

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17 comments

  1. Avia

    09/13/2019

    My daughter is a few months younger than Nora and is high needs to some areas so I always followed your posts about Nora with interest. She didn’t have an many “needs” when she was a baby/toddler but interestingly – she has developed a bit more as she’s gotten older. She was never a good sleeper. I tried every trick, schedule etc. and thought I had to be the worst mom ever because I could never get her to sleep for more than 3 or 4 hours at a time. Up until about 6 months ago she woke up every night and came and got in bed with us. In the last few months we’ve gotten that down to a couple times a week (I credit a weighted blanket). She has more separation anxiety now than she did when she was little. She likes school but still gets anxious every morning when it’s time to go. She no longer likes staying the night anywhere where she’s used to go with no problems (at grandparent’s houses). So it’s interesting for sure. But then she’s smart, kind and funny and I can’t wait to see what kind of an adult she turns out to be!

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  2. Natalia

    09/12/2019

    Your posts on these subjects are so very encouraging! Yes, I’m still in the trenches with my little 4.5 yo (it has gotten a lot better than it used to be, but we still have a long way to go).
    Thank you for sharing about your experience and yes, it is even harder and so annoying when other parents or grandparents of “perfect little angels” look at you like you’re not even trying…the right way! ๐Ÿ™‚ ๐Ÿ™‚ ๐Ÿ™‚
    It’s SO VERY comforting to know that there are people out there that get it and children that have made it thought it all, very successfully! I took a screenshot of the very last few sentences because I had tears in my eyes when I read them and I’ll need to read them again, and also because I want to have a quick short cut for when I need that encouragement. I have a feeling it will be soon…

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  3. Jas

    09/11/2019

    These posts have helped me a lot too! Mostly it’s just nice to know that other people are going through the same thing. My 3.5 year old daughter is high-needs as well. She still has severe separation anxiety, extreme sensitivity to loud noises, and she will only nap if I’m lying down with her. Things are SO much better than they used to be and I see them improving all the time, but it’s still so difficult at times and it’s nice to hear that there’s a light at the end of the tunnel.

    For whatever reason, so many people like to comment on how to fix it or tell me that I shouldn’t be letting her “run my life” and that’s really the most frustrating part for me. Yes, things like potty training and socializing have been more difficult with her than they seem to be with other kids and it is annoying sometimes, but I’m positive that forcing her into situations that scare her or overwhelm her is not the right move for us. I wish other people could understand that!

    Glad to hear things are so much better for you and Nora now ๐Ÿ™‚

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    Andrea Reply:

    I think any time we realize we are not the “only ones” the situation feels easier!
    And YES, the constant tips and advice from friends, family, and complete strangers was often frustrating and annoying. I got to the point where I would just lie when people asked “how did Nora sleep?” or “Is she eating anything now?” Lying was easier than listening to more advice

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  4. Meghan

    09/11/2019

    My middle child is my high needs child. When he was a toddler, it seemed like we had little to no positive interaction during the day. Every night I would rock him and tell him wonderful things about himself and our love for him. It was important to me to end the day on a high note. Our pediatrician also dismissed my concerns. We figured things out that helped him like eliminating food dyes and sugar. Rough housing and tickling. Having him do heavy โ€œworkโ€ like shoveling and pushing things. I wish I would have followed my gut sooner, but finally when he was 5, I took him to a neuropsychologist. They recommended a tonsillectomy, frenulectomy, speech therapy, and counseling. As a 9 year old, he is doing so awesome! He is a great student, good sleeper, a helper, and kind. Yes, he tends to be naturally a little more grumpy than my other children but itโ€™s not a problem. I really donโ€™t have memories of the really difficult days. I think back and remember his younger self as goofy and incredibly adorable.
    Your story with Nora is so inspiring! If I had your story I might not have felt so desperate at times like I was doing something wrong. (Seems like she was sensory avoiding and my son was sensory seeking, but both challenging.)

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    Andrea Reply:

    yes Meghan — Nora was (and is) more “sensory avoiding” — I’ve never heard it said that way before though!
    So glad you got things figured out with your sensory kiddo too — I wish I would have trusted my gut sooner too versus listening to everyone tell me everything she should be doing or everything I should NOT be doing to “give in” to her!

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  5. Margaret

    09/11/2019

    ))This is going to sound a little weird, and I hope you won’t be offended by the comparison. I read that post a year or so ago when I was reading through your archives after I found your blog, and it was a great help to me–and not because I have children: it helped me adjust my attitude towards my dog.
    Nina has severe separation anxiety–it was apparent when she was a puppy, but I minimized it, and told myself she would outgrow it. After I lost my other 2 dogs in 2014, and decided to take a sabbatical from raising guide dog puppies a couple of years later it became acute. She was okay with me going to work, but any other absence precipitated a meltdown.
    After one of the worst, I got a referral to the behavioral vet at Purdue, and we came home with Prozac and a training plan. She is doing much better.
    Where your post helped me was in how I felt about it. I realized my only choices were to deny it (not working), blame myself (neither true nor helpful), blame her genetic background (ditto), or accept that this is who she is, meet her needs, and try to give her the tools to deal with it.
    I also realized that she was not happy as an only dog, and went looking for an older dog to be a companion to her. (I really lucked out there, as my new dog, a retired show dog, is proving to be an Obedience rockstar–virtue was more than it’s own reward.)
    So thanks. And I’m glad Nora has got a handle on it.

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    Andrea Reply:

    you’re right — it did sounds a little strange at first (but I’m not offended!) I’m glad my post help you in any way. Thanks for sharing a different perspective on how this helped you in your life!

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  6. Jeanine

    09/11/2019

    Nora is beautiful, and I’m so glad that she’s doing so well! You might enjoy reading the book, “Barking up the Wrong Tree” which gives a good explanation of why good parenting is so important for those who may not be so easy to raise. I believe that you and Dave are doing an amazing job, and I’ve loved following your journey!

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    Andrea Reply:

    thank you ๐Ÿ™‚
    I will have to look up that book (if not for the content, then simply because the title is so fantastic!)

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  7. Diana

    09/11/2019

    I’m glad there’s hope! My high-needs little guy (#3) doesn’t have the sensory issues, so food wasn’t as much of a problem. But the 24/7 attachment was really draining. I slowly came into the realization that somehow my physical presence is one of his needs, just as much as food or drink. And it’s easier mentally to meet a genuine need than to just give into someone’s demands.

    Meeting my child’s need for security has GOT to have a better long-term result than continuing to fight it just because “he needs to learn sometime.” This applies to so many areas of life with him–receiving childcare from others, his sleep needs and patterns, times that he needs to recharge with me through the day, and even how I handle discipline and correction.

    I’m approaching those things differently because he has this extra need that not all kids seem to have. It’s working well for us and I don’t care what anyone else says or thinks. I’m grateful to have many encouragers in our lives, so I don’t face pushback often ๐Ÿ™‚ He’s a force of nature, and I’m excited to see what he enjoys as he gets older!

    Regarding whether this is easier with your first or a later child, I’ll say for me, I’m glad he was #3! I have been (mostly) confident that I’m adjusting to his needs, not just being a weak parent. I know that what worked with the other kids does not work with him.

    Sally Clarkson’s book with her son Nathan is a fascinating look into how you can adjust parenting strategies to meet different children while still keeping the same end goals in mind. I may not agree with her on everything, but she is a master at this!

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    Andrea Reply:

    yes, the 24/7 attachment is what REALLY got to me too. I could handle periods of fussiness or crying, but ALL DAY EVERY DAY without a break (because she wouldn’t go to anyone else) was just SO exhausting for me!
    Thanks for the book recommendation and for sharing a little of your story!

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  8. JJ

    09/11/2019

    I remember that post so well, and it really made me feel normal. Isolation can make anyone feel stuck. Knowing that it wasn’t something I did/didn’t do was so much needed and helped start the process of not comparing to others and feeling like something was “wrong” with my kid or me. Thank you for writing that post!!!

    Other advice I was given was to grieve what I felt I lost. So for me, I was grieving the ideal that I didn’t have–an easy-going kid who wasn’t over-sensitive to everything. I poured out my heart to the Lord with my disappointments and frustrations while asking for a genuine love for who they are where they are. I was amazed at how freeing that was. And also humbled, because I remember stories of when I was a high needs child.

    Having a best friend with the same situation(we both have 3 kids and all 3 kids are high needs) really helps!!! Finding support and encouragement locally really strengthened me and allowed for get togethers where I’m not uptight. We know that someone will get upset at some point. And that’s okay!!!

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    Andrea Reply:

    This is so helpful — Thanks for sharing!
    And yes, I can imagine that a best friend with a very similar situation is extremely helpful for you!

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  9. shan

    09/11/2019

    Dear Andrea! Thank you for this wonderful update. God is so good. He gave you and Dave the strength, patience, resourcefulness, and support and encouragement to go through the tough times you had with Nora. She is such a special and sweet child!! And so are your other children. You are indeed a very blessed mother. My children are grown now, but we had many concerns due to the fact they were adopted and then their dad (adoptive) died when they were young. Lots of prayer, love, patience, taking a long-term perspective, and asking for forgiveness have helped. And I pray that the best is yet to come, as I pray for them and God continues to work in their lives.

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    Andrea Reply:

    Yes Shan — we are so grateful!

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  10. LoriB

    09/11/2019

    My 20 yo daughter has a rare genetic disorder that will never go away. It affects us every day yet it is our normal. As I watch younger parents via FB I see then at a very different stage. โ€œ…even if it doesnโ€™t end as quickly as you hope or pray it will, I have found that the situation often starts to FEEL easier because Iโ€™m learning and growing and adapting to a โ€œnew normalโ€ along the way.โ€ I am thankful today to be on this side of that sentence. Rejoicing with you in Noraโ€™s achievements. She looks like a wonderful daughter and sister. And thankful for the reminder that there are others who need my compassion in a tough situation.

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