Finding Ninee » Sharing our special needs and autism story through heart and humor.

    Our Land: Four Siblings, One with Special Needs

    OurLandBannerFindingNinee

    I feel incredibly lucky to be able to type the words that today’s Our Land post was authored by another awesome IRL friend.  Her son Jack (not his real name) joined Tucker’s Preschool Autism Classroom more than a year ago now, I think. I’ve had the pleasure of getting to know her through play-dates, school events, and our so-important-that-they-may-be-considered-lifesaving happy hours (and no, I do not tend to be dramatic, as they really are life-saving, or, at least sanity-saving, in the I’m Not Alone and Thank God for Similar Moms kind of ways).

    This PAC mom is not only elegantly learning how to parent Jack, but has three other children to deal with love at home. To say that I admire her is an understatement. I thank her for sharing her story with all of you, here, today.

    Our Land: Four Siblings, One with Special Needs

    The first thing I noticed was the incessant screaming….it was so deafening.  As if he were in real pain.  He had a very hard time keeping my milk down and his wet diapers were diminishing as days slowly passed.

    It turns out that he WAS diminishing.  An ultrasound of my son’s lower belly revealed that, at 22 days old, my third child had been suffering from pyloric stenosis.  There was a growing blockage in his small intestine that was preventing food from passing.

    He was gradually starving to death.

    After emergency surgery at 23 days old, he quickly put on weight and kept his food down, but his intense crying didn’t cease much.

    His screaming frightened my other children. They would get teary and ask me to make him stop.  It was an ear-piercing shrilly scream that would last until the little guy completely exhausted himself.  This happened day after day; month after month. It seemed to last forever.

    So, my children’s first impressions of their little brother were that he was LOUD (scary), that he didn’t want interaction from them (crying when they were nearby), and that he needed mommy a LOT (jealously).

    As could be predicted and expected, the littlest was excluded from their play and mostly ignored.  I am sad to say, but I know that they truly did not enjoy his company for the first 2.5 years because he was so easily upset by others and his environment. He also was a Mommy hog!  Siblings don’t like that.

    Through trial and error, I slowly discovered some mothering techniques that seemed to alleviate some of the discomfort of my colicky baby boy.

    He liked to be held very, very tightly – lots of pressure, all over his body.  I also learned that massaging his head and neck with the tips of my fingers was soothing to him.

    As time marched on, it became apparent that he had a language delay. However, the pediatrician said to give it more time because he had SOME words he was using.

    But why was this toddler shrieking at me multiple times a day?

    Oh, and why was he walking on his tip toes so much?

    Why was he chewing on his fingers???

    As he grew, I would often find him hanging upside down off the couch.  Or touching the top of his head to the floor for more than a few seconds.  It wasn’t uncommon to find him lying on the stairs, on his back, head first.

    Clues, pieces of a greater puzzle as to who this baby was and what he needed from his environment…. and from me.

    Intervention to the Rescue!

    At the age of 2.5 years, Jack was accepted into a special education preschool where he could learn skills that come naturally for other 2 year olds.

    HE BLOSSOMED.  The child we knew was transforming before our eyes.

    And it happened so quickly.  Jack is now a very happy, verbal four year old with a huge infectious laugh.

    Certainly, incredible change can happen when early intervention is embraced and special needs kids get the support they need and deserve.

    Siblings Flowers

    Teaching Acceptance

    If you will, think about how this child’s first two and a half years impacted his relationships with his oldest siblings.  Well, naturally, they didn’t want anything to do with him.  And why should they?

    Jack is still the same kid.  His body still needs and craves the same ‘input’ as it did when he was a baby and toddler.

    Here is a scenario that occurs with high frequency…..

    My oldest son, Robbie, suddenly shouts from an adjacent room:  “MOM!  He just ate the wheel off my favorite car!!  Why did he do THAT!?”

    I take a deep breath from the kitchen, as I hear Jack cry.

    To Jack’s siblings, his behavior is erratic, disruptive and can be somewhat aggressive.  Many times he is too loud, applies too much bodily pressure to others, and struggles to engage in creative play.

    WHY, WHY, WHY IS JACK BEHAVING LIKE THIS? It makes absolutely NO SENSE to Robbie.  They were playing so well just moments ago. How is it that Jack can be playing calmly one minute with his brother and then start mouthing an army man just as they were going to do battle?

    Why the sudden need to jump off couches, hang upside down on staircases, mouth objects, and run around our house pounding his feet with the force of a baby elephant?

    I have wondered this too, and, through countless Google searches and reading many books to find answers, I have come to my own conclusion that Jack was born with Sensory Processing Disorder (SPD).  He also suffers from anxiety which can affect his ability to play calmly and naturally with others.

    Jack’s nervous system receives outside stimuli and is unable to always process it as typical nervous systems do.  For example, sometimes the environmental input is too intense for his nervous system (e.g. lots of people, loud noises, bright lights) and he needs to find ways to compensate for the imbalance his system/brain instantly feels (i.e. spinning around, hanging upside down, applying head and body pressure to others).  He “seeks” out atypical behaviors because he NEEDS TO.  It is his way of trying to calm his system and adapt to his current environment (whether it be at home, at school, at the grocery store).  He can’t help it; he was born this way.

    If Jack is to learn to manage and cope with his body’s impulses, he will need the support and EMPATHY of his siblings.

    Before they can empathize, they need to understand why Jack is who he is.  That we are ALL different in our six person family and we all need to be accepted for our unique differences, whatever they may be.

    Four Siblings Looking at a Lobster Tank - Sister Wearing her Rapunzel Costume.

    Four Siblings Looking at a Lobster Tank – Sister Wearing her Rapunzel Costume.

    Of course, there are wonderful moments where Jack engages with one or two of his siblings, but these moments are disrupted once Jack feels excited by the play, because he will begin to bang his head on another sibling’s body.

    I, as their mom, need to appreciate the moments and realize that I, too, have my own coping mechanisms.

    My oldest son, who really does want to play with his younger brother, will ask me with tears in his eyes: “Why does Jack bang his head on me?  Why doesn’t he want to play with me?”

    Sibling PlayANGER, CONFUSION, HURT FEELINGS

    A few weeks ago I had a private talk with Robbie about Jack, right after Jack had unknowingly upset him (I didn’t mention that Jack’s behavior is confusing to me, too, and that it hurts me just as much).

    “Robbie, do you want to know why Jack chews on things, bangs his head on your back sometimes?”

    “Yes, mama.”

    “He was born needing a lot of body pressure.  I used to have to hold him very tightly to get him to stop crying as a baby.  Now, he tries to give himself this pressure when he is either excited (like when you play with him) or when he is anxious or scared.”

    “He will learn how to play better, how to play gently with you but he needs your help.  YOU need to tell him “STOP!  That hurts, Jack.”   If he doesn’t stop then you get up and walk away from him.”

    Robbie looks pensive, taking in some of what I am saying.

    “Robbie, if he obeys you and stops, you could ask him if he needs a “squeeze.” (a giant, pressure-filled hug!)

    “Okay, mama. But you know what?”

    “What?”

    “Jack won’t do these things when he is 6 or 8 years old.  He just won’t.”

    My oldest son has FAITH that his little brother will stop these behaviors over time.  I have faith, too.

    I have faith that if I teach my children how to effectively and appropriately react to Jack, that he will modify his behaviors to be more pleasing to his siblings.  Don’t all siblings just want to be a part of the play, part of the fun?  No matter who they are and what their disabilities are, all children want to feel included and accepted.  And it needs to start in the home where they feel most secure.  And if they are lucky enough to have siblings close to their age, it needs to start with them.

    Which all starts with us, as parents.

    Undoubtedly, I will have to have many of these little but incredibly important chats with each of my typical children as they age.  It is how I plan to foster empathy and compassion as things evolve in our home.

    I wasn’t born knowing how to parent my beautiful, atypical child.  I am evolving too.

    I wasn’t born knowing how to parent my

    I know that Jack will adapt and change as he ages, as my other children will adapt and learn to appreciate Jack’s fun, robust personality.

    For now, we are working on understanding differences and how to respond to sibling’s behaviors.

    Just as I had to gradually learn how to mother Jack differently, they will learn how to respond to him and understand him. And he to them.  After all, relationships are a two-way street.

    This task is very challenging for all family members but vital to Jack and his siblings.  I believe it will ultimately have the largest impact on their lives as they will grow into empathetic, tolerant adults who have learned by direct experience to never judge anyone too quickly.

    My son has taught his parents that many kids need extra empathy and support.

    I love you, my little B Man.  You are a gift.

    B-man

    Aw! (sniff) Here’s to Jack, his three siblings, and his lovely amazing and strong mama who is making the world a better place. One filled with more empathy, understanding, and love. Thanks, IRL PAC friend. Thank you so much.


    • Kenya G. Johnson - I think it’s wonderful that the siblings are coming around and that the oldest in particular is trying to understand. None of us were born to know what to do but so glad there’s are communities that can help one another and that “motherly instinct” is a thing ;-)
      Kenya G. Johnson recently posted…Decaf Rehab – Day OneMy ProfileApril 30, 2014 – 9:28 amReplyCancel

    • Janine Huldie - My heart went out to your friend here today, Kristi. And even though neither of my children have had this or any other real delays, I had Emma as a baby who had colic just scream and scream for the first few months of her life. I can honestly say that at the time I felt so helpless and will never forget just doing the best I could for her as her mother. I know it isn’t the same at all, but I guess what I am saying as moms we do the best we can and as Kenya said above, it is just our “motherly instinct’ to do just that. Hugs to you and your friend. And thank you again for sharing here with us today.
      Janine Huldie recently posted…Losing Power Is No Laughing Matter, But..My ProfileApril 30, 2014 – 10:05 amReplyCancel

      • Kristi Campbell - Janine,
        The one thing I’ll say is that it’s enough the same to matter. Any child who is screaming will make mom feel helpless and frustrated! I can’t imagine actually – Tucker was pretty quiet as a baby…
        And you’re right – we are just all doing the best we can and thanks so much for reading Janine! I hope you’re having a great day!
        Kristi Campbell recently posted…Our Land: Four Siblings, One with Special NeedsMy ProfileApril 30, 2014 – 10:39 amReplyCancel

    • Kerri - Oh my…I’m in tears. This post is lovely, just so lovely. And I am feeling so very lucky. Your experience is just what I was afraid of with my girls and am so thankful (to my bones) that I have never had to have that talk with my oldest. I think the 5 years btwn them makes it easier. But still, I am sorry. So sorry that your heart has to break as you see the relationships the siblings have and that it gets put back together by faith is just awesome.

      I am making a muck of this. But I want to thank you. For sharing. For being Kristi’s friend. For being a warrior mom. For never giving up on your beautiful son.

      Simply awesome addition to the Our Land Series
      Kerri recently posted…The Challenge WallMy ProfileApril 30, 2014 – 10:47 amReplyCancel

      • Kristi Campbell - Kerri! You didn’t make a muck of your comment at all. In fact, the only thing I can think of that you’ve mucked up is poor Jen’s Twisted Mixed Tape Tuesday ;)
        I’m so glad for you that Abby is such a Boo fan, and agree that my IRL friend is awesome for sharing, being my friend, and for being a warrior mom who will never give up on her little boy!
        Kristi Campbell recently posted…Our Land: Four Siblings, One with Special NeedsMy ProfileApril 30, 2014 – 7:59 pmReplyCancel

    • Liz Pema - Being a mother is a challenge day after day. I can’t imagine the challenge of having four children and then one that has special needs. This is one strong mama! Thank you for sharing and for stating that as mothers, we “are evolving too” BeautifulApril 30, 2014 – 10:53 amReplyCancel

    • Lady Lilith - How wonderful. As I was reading this post I know I can use it to help some of the families I work with. Thanks for the inspiration.April 30, 2014 – 11:02 amReplyCancel

    • Dana - I know a few families who have multiple children, each with one child who has special needs. The siblings are some of the kindest, most compassionate, and caring people you will ever meet. Some of that is likely due to parenting, and some due to their own personalities. But I’m sure that some of it is due to the fact that they have a brother or sister who needs something different than most siblings. As crucial as his siblings are to Jack’s development, Jack is an integral part of theirs too. It sounds like your friend is doing a wonderful job of evolving as a parent, Kristi. So glad she shared her story!
      Dana recently posted…Today is our day – Listen To Your Mother showMy ProfileApril 30, 2014 – 11:19 amReplyCancel

      • Kristi Campbell - Dana,
        I love reading that the siblings you know of special needs kids are some of the kindest and most compassionate that you know. Although I’m willing to bet Gwen fits there too ;)
        I think she is helping all of us to evolve as parents and thanks, Dana! I’m glad she shared her story, too.
        Kristi Campbell recently posted…Our Land: Four Siblings, One with Special NeedsMy ProfileApril 30, 2014 – 8:04 pmReplyCancel

    • Emily - A beautiful post matched by that beautiful boy pictured at the end.:) It’s true that Jack’s siblings will grow to be such empathetic kids and adults – I see it with my younger two, even though they too become very frustrated with their brother at times.They are old enough to understand his challenges and yet they also just see him as their brother, who picks on them and annoys them, as any older brother would do.:)
      Emily recently posted…A Very Special NeedlepointMy ProfileApril 30, 2014 – 11:31 amReplyCancel

      • Kristi Campbell - I love the photo at the end, too, Emily!
        And I love that you’re so kind and helpful to always offer the perspective of how your boys are with an older sibling. I think it’s really helpful to not only me, but to everybody here who wonders how things might be for our kids in a few years. And for the reminder that he picks on them like any older brother would!
        Kristi Campbell recently posted…Our Land: Four Siblings, One with Special NeedsMy ProfileApril 30, 2014 – 8:10 pmReplyCancel

    • Kerith Stull - This is just beautiful! I often worry so much about my own daughter’s older sister. They are 18 and 20 years old now, so I can talk to them in ways I couldn’t when they were younger. Back then, I wish I had a crystal ball to know what my oldest was thinking. Now her thoughts are muddled by time and a different perspective. Great post!
      Kerith Stull recently posted…Five Ways to Help Your Special Needs Child Grow Their FaithMy ProfileApril 30, 2014 – 12:49 pmReplyCancel

      • Kristi Campbell - Kerith, I think your older daughter’s perspective is really valuable to those of us who are raising little kids (me older than you, I believe but you know um cough ok), because it really helps to know that one day, siblings (not that Tucker will have this experience but it helps me anyway) can give us insight that we’d never have seen otherwise.
        Kristi Campbell recently posted…Our Land: Four Siblings, One with Special NeedsMy ProfileApril 30, 2014 – 8:23 pmReplyCancel

    • Sarah - The line about still evolving. LOVE. I often feel so unequipped. I have to remind myself I am smart, and I can learn as I have learned before. Ugh, but it’s so HARD!
      Sarah recently posted…And what does dinnertime look like at your house?My ProfileApril 30, 2014 – 1:35 pmReplyCancel

    • Joanna - Such an important issue to talk about- empathy. For everyone but also with the kids. It is really brave of you to bring it to life in your writing. I love it, and am thrilled that your guys have such a strong, patient, and loving mom!April 30, 2014 – 8:18 pmReplyCancel

    • Tamara - Aw, he’s beautiful! And I laughed at the idea of you not mentioning that your daughter is wearing a Rapunzel costume and just letting us all believe that’s her real hair!
      Empathy is such the word here and it’s interesting how you are all learning as a family. Jack is learning. His siblings are learning. You are learning.
      And look at how much you have unlocked in just a few years.
      Tamara recently posted…When You Wish Upon a Star.My ProfileApril 30, 2014 – 9:24 pmReplyCancel

    • JenKehl - My Skewed View - You are right! You should keep having faith, and he will start to understand how to behave more appropriately! Sensory Processing Disorder is not something that can be cured, but the right parents and therapists can teach a child AMAZING coping strategies that help them get through each day and eventually do it without getting in someone’s face, or getting overly excited.
      I totally understand where you are coming from, and secretly wish there was a “cure” because the truth is, it is always with us in some form or another.
      But there are moments when things “click” and you realize. Okay, this works, let’s remember so next time we’re in this situation we can do this again!
      Also…Isaiah had to be swaddled to sleep until he was almost a year old! So the tight thing, totally get it!
      And, now Isaiah watches TV standing on his head at the foot of my bed!
      Great minds, huh?
      JenKehl – My Skewed View recently posted…Living With Food Allergies – I’m Not Pulling any PunchesMy ProfileMay 1, 2014 – 12:28 amReplyCancel

    • thedoseofreality - A beautiful post. And I absolutely love that photo in front of the fish tank. It is just perfect. :)-AshleyMay 1, 2014 – 10:02 amReplyCancel

    • Michelle @ A Dish of Daily Life - So beautifully said. I love how Robbie is trying to understand and learn how to help Jack. Life is all a learning process…it sounds like Jack is blossoming!
      Michelle @ A Dish of Daily Life recently posted…20 Spring Salads with a Burst of FlavorMy ProfileMay 1, 2014 – 2:36 pmReplyCancel

    • Berta Childs Aulestia - Wonderfully written Rebecca. We love all of those little munchkins!May 1, 2014 – 3:10 pmReplyCancel

    • Christine Carter - Oh how this was just so beautifully written. What an amazingly strong, courageous and wise friend you have Kristi!! That precious boy is blessed to have such an invested loving mom. He is ADORABLE and his brother’s faith in him- and his mother’s faith in him- made me cry.May 1, 2014 – 5:54 pmReplyCancel

    • Linda Atwell - Beautiful.May 5, 2014 – 6:23 amReplyCancel

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