Two Children with Undiagnosed Disabilities | The Unconditional | Real Stories Original

00:29:12
https://www.youtube.com/watch?v=_dNk3GR1Y0Q

Summary

TLDRThe video highlights the life of a family raising two children, Colby and Leighton, who have developmental delays without a recognized diagnosis. The parents share their journey of dealing with hypotonia and motor delays, the struggle for communication, and the challenge of numerous medical consultations without definitive answers. Colby and Leighton have not regressed, but progress is slow. Leighton uses an eye gaze device to make choices, while Colby finds solace in music, which is something she deeply enjoys. The parents express the emotional struggle of not having a diagnosis for their children and the decision to prioritize quality family time over continuous medical inquiries. They demonstrate resilience and love, while hoping for a diagnosis and a means for their children to communicate. Despite feeling like caregivers rather than traditional parents, they cherish their children's small victories and the profound connection of love shared between them.

Takeaways

  • 👨‍👩‍👧‍👦 The parents manage undiagnosed developmental delays with love and dedication.
  • 🧠 Despite numerous medical consultations, Colby and Leighton remain undiagnosed.
  • 🎶 Music is a significant comfort for Colby, illustrating the power of art in healing.
  • 👀 Leighton's use of an eye gaze device highlights alternative communication methods.
  • ⏳ The slow progression adds to the family's emotional and practical challenges.
  • 🩺 Regular therapies are crucial for addressing physical and speech delays.
  • 👐 The parents balance hope for a diagnosis with a focus on current quality of life.
  • 👋 Communication is a major hurdle, and parents long for "I love you" from their kids.
  • 💪 Resilience is evident as the family navigates caregiving and hopes for answers.
  • 🌟 Small victories, like making choices, are celebrated by the family.
  • 🎭 The emotional weight of caregiving versus traditional parenting impacts the family's identity.
  • 🔍 The search for a diagnosis continues as a lingering hope for understanding.

Timeline

  • 00:00:00 - 00:05:00

    Parents express struggles with developmental milestones of their child, comparing with norms, awaiting communication abilities. They wish for understanding children's experiences, crave simple communication, and reflect on dreams of family activities.

  • 00:05:00 - 00:10:00

    They face challenges with undiagnosed condition, visiting various specialists without answers. Despite normal scans, children show delayed motor skills. Parents yearn for diagnosis; children often require assistance, exhibit tactile seeking behavior, slow but non-regressive progress.

  • 00:10:00 - 00:15:00

    Eye gaze technology aids communication for Layton, enhancing independence and choice-making. Despite initial reluctance due to potential genetic risks, parents decided to have Layton, balancing medical opinions and personal hopes. Parenthood involves complex emotions about children's potential and freedom.

  • 00:15:00 - 00:20:00

    Parents manage professional responsibilities alongside caregiving, feeling contrasting emotions in teaching others' abled children. Observations of children's progress, involvement in therapies, and discussions of potential diagnoses highlight frustrations of living without a clear medical understanding.

  • 00:20:00 - 00:29:12

    Music soothes the child’s distress in absence of direct communication. Comparing with peers, parents feel more like caregivers than traditional parents due to lack of typical child interactions. Yearning for diagnosis and normal family activities persists, underscored by emotional dependency on each other and societal misconceptions about their strength.

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Mind Map

Video Q&A

  • What challenges do the parents face in this video?

    The parents face challenges of raising undiagnosed children with developmental delays, including lack of communication and uncertainty about their children's condition.

  • What is the family's hope for their children?

    The family hopes to find a diagnosis and improve communication with their children, and they wish for normalcy and independence for them.

  • How do the children communicate with their family?

    Leighton uses an eye gaze device to communicate choices, and Colby responds positively to music for comfort.

  • What therapies are the children undergoing?

    The children are undergoing physical therapy, occupational therapy, and speech therapy, among others, to address their developmental needs.

  • What is the significance of music to Colby?

    Music is very important to Colby, as it comforts and soothes her, providing an essential means of engagement.

  • How do the parents view their role?

    The parents view their role as caregivers and are devoted to supporting their children's needs, while wishing for more typical parent-child interactions.

  • What is the main emotional struggle for the parents?

    The main emotional struggle is the uncertainty and lack of diagnosis, which leaves them without a clear path forward.

  • What external support do they seek?

    They seek support from various healthcare providers, including neurologists and geneticists, but struggle with lack of concrete answers due to undiagnosed conditions.

  • What is the impact on the family's daily life?

    The children's needs shape the family's daily routines, requiring constant care and attention, and affecting the parents' work-life balance.

  • Why does the mother feel like a caregiver rather than a parent?

    The mother feels like a caregiver because the focus is on managing day-to-day care rather than experiencing typical parental interactions and milestones.

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Subtitles
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  • 00:00:02
    [Music]
  • 00:00:14
    hmm
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    [Music]
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    oh
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    one two three
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    [Music]
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    [Applause]
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    [Music]
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    um
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    yeah i know let's go see mom
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    do you want music i know you want your
  • 00:01:16
    food you want your food
  • 00:01:30
    [Music]
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    everything is different everything's
  • 00:01:40
    not the same as other people
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    hey layton hi
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    it's hard to look at those charts of
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    this is where your baby should be at
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    this age and this is where they should
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    be
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    at this age developmentally and
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    still waiting for a word
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    is your shirt wet too
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    still waiting for an unassisted
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    [Music]
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    step
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    you want to get you some more juice can
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    i have that
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    look at this
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    that makes it a little better
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    it'd be so invaluable to be able to put
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    myself in their head for
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    10 minutes and feel it and to know what
  • 00:02:47
    it sounds like and what it you know what
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    it looks like
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    [Music]
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    yeah just having a simple yes or no
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    for communication would solve a lot of
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    problems
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    [Music]
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    almost done
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    i had this dream when we were starting a
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    family
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    thinking about what life is going to be
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    like when this
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    baby came into the world and the things
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    that we would do together
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    and if it was a girl that you know we'd
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    shop together and we do crafts together
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    like i did with my mom and
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    if it was a boy they'd play sports
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    outside and sorry
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    hello hello oh we got hiccups now
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    yeah pregnancy with colby went
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    without hitch it was normal pregnancy
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    developmentally she was
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    right on track such a beautiful little
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    girl yeah
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    we had a lot of friends that had babies
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    right around the same time we did
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    and one of our friends like mentioned
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    something to merrill like is everything
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    okay with her she just seems to be
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    lagging behind
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    the whole time you're just kind of oh
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    she's she'll come into it you know
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    looking back at it now she was behind
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    from day one she was behind i did have
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    some difficulty
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    breastfeeding her because of her low
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    muscle tone even her tongue muscle was
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    not doing what i'm supposed to be doing
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    [Music]
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    not that that was super abnormal at that
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    time but it didn't get better
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    hypotonia which is just lack of muscle
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    tone
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    there's fine motor delay there's gross
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    motor delay
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    i've heard dystonia before i'm not even
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    sure what that is off the top of my head
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    to be completely honest with you
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    every day was something different
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    different doctors we saw physical
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    therapy occupational therapy speech
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    a physiatrist i mean we saw doctors i
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    didn't even know existed
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    where are you going missy it wasn't just
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    about
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    taking a step anymore it very quickly
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    became more than that
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    i feel so good oh tape
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    [Music]
  • 00:05:54
    both kobe and leighton are undiagnosed
  • 00:05:57
    they have no known syndrome
  • 00:06:01
    or condition feet in
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    all of the mris that have been done
  • 00:06:17
    on colby and leighton have all come back
  • 00:06:20
    normal the structure of the brain and
  • 00:06:23
    the makeup of their brain
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    looks normal on all scans
  • 00:06:29
    bus is here babe i know
  • 00:06:41
    [Music]
  • 00:06:42
    up up and away see you later
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    [Music]
  • 00:07:00
    so
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    [Music]
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    good job
  • 00:07:17
    [Music]
  • 00:07:25
    this little quick video is about the
  • 00:07:27
    muppets and the weather and at the end
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    [Applause]
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    uh
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    nice
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    boy
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    excuse us
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    all right nice reaching they are
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    always seeking input because they don't
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    know
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    where their body is in space they're not
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    standing they're not
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    sitting down on their own someone's
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    always helping them do that
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    they're always trying to find something
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    like layton
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    some kind of interaction some kind of
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    body contact that tactile
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    input see
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    stopped growing good job
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    bubbles or book look at me
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    [Music]
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    goldie they've never really regressed
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    with any of their symptoms it's just
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    been a very slow
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    progression push the button please
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    oh you gotta try hold harder
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    there it goes
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    [Music]
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    all the king's horses
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    [Music]
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    good job
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    you're going so fast today
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    good job
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    blatant is currently working on using an
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    eye gaze device
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    he focuses on choices
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    with his eyes he he will stare at the
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    object
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    that he really wants each cookie
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    for each cracker
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    yes cracker you picked cracker good job
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    another cracker i think he's excited
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    that he gets to communicate with us and
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    he gets to
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    make choices
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    [Music]
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    we're continually raising our children
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    and doing
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    things for them and when they start
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    doing things on their own
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    it's we feel so happy for them that they
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    have that freedom and that independence
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    he got really excited
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    when we decided to have leighton
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    colby had already been seeing a
  • 00:11:46
    neurologist a geneticist
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    and her regular pediatrician and
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    the geneticist and neurologist could
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    really just tell us there's
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    like a 25 chance that this would happen
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    again
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    multiple people that we respected you
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    know for their medical opinion
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    said you know it's an anomaly
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    put your head up thank you
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    [Music]
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    i'm done up here heather
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    i specifically remember saying to her
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    like if
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    if this happens again you know i might
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    lose my mind i might not forgive myself
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    for that
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    you know knowing that there is a
  • 00:12:39
    possibility
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    even just a 25 chance like you're
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    you're gambling and you're gambling on
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    it's a human to human life it's not like
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    you're just playing cards
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    good night i love you
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    you seem tight i see you in the morning
  • 00:13:01
    [Music]
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    okay
  • 00:13:14
    [Music]
  • 00:13:18
    nice
  • 00:13:23
    [Music]
  • 00:13:32
    um
  • 00:13:38
    [Music]
  • 00:13:46
    hey
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    [Music]
  • 00:14:02
    have fun grabbing the bus
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    [Music]
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    i don't remember if i got a specific
  • 00:14:14
    call on that but that's the thing any of
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    those things we for sure address heath
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    is
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    the transportation supervisor for our
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    school district here in olmsted falls
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    he is at work a lot
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    days are long you'll pull up and if
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    sandy's behind you you can just radio
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    her i'm a dedicated person i try to get
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    my job done and do my job well
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    and i sometimes struggle with that i
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    have a job here to do too you know and i
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    want to make sure that i'm not focusing
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    more on
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    my professional obligations and
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    neglecting
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    you know stuff that needs to be done
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    here things that the kids need
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    thanks thanks see ya i chose a
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    profession that
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    really works well for how our family
  • 00:14:57
    situation has turned out
  • 00:15:00
    nine beads three for each string you
  • 00:15:03
    have three long strings
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    find the end things that are difficult
  • 00:15:07
    for our kids to perform
  • 00:15:09
    are not even probably thought about
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    with the students that i teach and them
  • 00:15:15
    not even realizing how lucky they are
  • 00:15:17
    that
  • 00:15:18
    they can do those things so easily table
  • 00:15:20
    six would you return the marker tray
  • 00:15:21
    that you brought over
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    put that in the back counter please i'm
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    waiting
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    i don't know if our kids will ever even
  • 00:15:28
    get to that point
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    arms out a little bigger since the last
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    time you've seen him just a little bit
  • 00:16:16
    good job hold it hold it hold it
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    stand up stand up come on steve you got
  • 00:16:26
    a big smile on your face but you're not
  • 00:16:28
    participating
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    you're not gonna help me she's doing the
  • 00:16:31
    same thing walking with
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    you know a little assist from behind and
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    then inner gate trainer
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    but i think she's going up the curve as
  • 00:16:38
    well does she see someone
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    else she does we haven't really heard
  • 00:16:43
    that one before
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    right there it's a bit nice to see if
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    she takes
  • 00:16:53
    some weight there's a little gentle
  • 00:16:55
    curve here yeah
  • 00:16:57
    what would you do about something like
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    that like just to make sure it doesn't
  • 00:17:00
    get
  • 00:17:00
    you know if you wanted to get anywhere
  • 00:17:02
    we'll probably she probably needs at
  • 00:17:04
    some point just a baseline x-ray to
  • 00:17:07
    see what the degree is it looks mild at
  • 00:17:10
    this point
  • 00:17:12
    so we start to worry once the curve gets
  • 00:17:13
    behind about 20 degrees
  • 00:17:16
    and then depending on what the degree is
  • 00:17:19
    what
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    there are some funding options that
  • 00:17:23
    we could be presented with but because
  • 00:17:25
    we don't have an actual diagnosis
  • 00:17:27
    they just have quote unquote symptoms
  • 00:17:30
    and syndromes that
  • 00:17:32
    don't really qualify under anything
  • 00:17:35
    so with the mutations that they both
  • 00:17:37
    carry the one mutation has been seen in
  • 00:17:39
    children that have developmental
  • 00:17:41
    problems microcephaly etc
  • 00:17:43
    but for the disease to happen you have
  • 00:17:45
    to have it on both sides
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    they do have mutations of the same gene
  • 00:17:49
    but they're in different
  • 00:17:50
    points on the gene and so based on that
  • 00:17:53
    it's really a little bit tough to know
  • 00:17:55
    for sure
  • 00:17:56
    whether or not this is in fact what's
  • 00:17:58
    responsible
  • 00:17:59
    the fact that they both have it again
  • 00:18:02
    raises the suspicion a little bit
  • 00:18:03
    higher because just by random chance you
  • 00:18:06
    know for them both to get exactly the
  • 00:18:08
    same one would be unlikely
  • 00:18:12
    i guess i'm reminded why it's
  • 00:18:15
    we don't have to come here more than
  • 00:18:17
    once every two years
  • 00:18:23
    we're not just going to be lab rats i'm
  • 00:18:24
    not going to live my life and make the
  • 00:18:26
    kids spend their lives in hospitals and
  • 00:18:28
    you know just our fun time isn't hanging
  • 00:18:31
    out and goofing around as a family we go
  • 00:18:33
    to the hospital for this or for that
  • 00:18:34
    that was
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    i'm sick of that i was done with it i
  • 00:18:36
    don't want to deal with it anymore
  • 00:18:50
    like if we could have one thing
  • 00:18:52
    communication would be it
  • 00:18:55
    for them to tell us like what's wrong
  • 00:19:00
    not just complain about it it's matter
  • 00:19:03
    corbs
  • 00:19:07
    got a bad song on
  • 00:19:19
    good job very nice
  • 00:19:24
    over all the way keep going keep going
  • 00:19:27
    keep going
  • 00:19:29
    that's the way and back again
  • 00:19:32
    push yeah
  • 00:19:36
    more
  • 00:19:41
    [Music]
  • 00:19:50
    you know how to do it put your head down
  • 00:19:52
    put your head down
  • 00:19:53
    down you got it
  • 00:20:06
    [Music]
  • 00:20:12
    want your music
  • 00:20:22
    [Music]
  • 00:20:29
    music with colby it's everything there
  • 00:20:31
    it's the most important thing
  • 00:20:33
    i would say that that she enjoys in her
  • 00:20:35
    life
  • 00:20:37
    she likes classical style stuff she
  • 00:20:38
    doesn't like poppy
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    you know stuff that kids her age are
  • 00:20:42
    probably not listening to
  • 00:20:44
    it's hard too because i feel like
  • 00:20:45
    sometimes we
  • 00:20:46
    [Music]
  • 00:20:47
    don't even get to the answer of what's
  • 00:20:49
    really bothering her we just kind of
  • 00:20:50
    soothe her
  • 00:20:51
    with the music on her headphones and
  • 00:20:54
    we've
  • 00:20:55
    kind of lost what she was looking for
  • 00:21:06
    one more thanks annabelle okay colby
  • 00:21:10
    you do it
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    all right i won't make you walk again
  • 00:21:22
    we'll just go back it's mind-blowing
  • 00:21:25
    sometimes being around
  • 00:21:26
    friends with their kids and seeing them
  • 00:21:29
    do things on their own
  • 00:21:31
    and what they can do their parents
  • 00:21:33
    enjoying
  • 00:21:34
    themselves and enjoying their kids being
  • 00:21:37
    independent
  • 00:21:41
    it's not necessarily being upset that we
  • 00:21:44
    don't get to do it it's
  • 00:21:45
    upset that the kids don't get to do it
  • 00:21:46
    and don't get the same enjoyment that
  • 00:21:48
    other kids do
  • 00:21:52
    [Music]
  • 00:21:54
    we're parents in the sense that
  • 00:21:58
    we created colby enlightened
  • 00:22:08
    but i don't always feel like i'm a
  • 00:22:10
    parent
  • 00:22:12
    i feel more like a caregiver
  • 00:22:28
    but i know they love us because they get
  • 00:22:31
    excited to see us
  • 00:22:34
    it would just be nice to get that
  • 00:22:39
    i love you
  • 00:22:45
    our kiss are a hug
  • 00:22:49
    [Music]
  • 00:22:53
    i couldn't do it without her
  • 00:23:01
    we're just a good team i guess you know
  • 00:23:03
    it works it's
  • 00:23:04
    frustrating sometimes too like uh i know
  • 00:23:08
    marielle doesn't like it when people say
  • 00:23:09
    oh you know
  • 00:23:11
    you guys were chosen it was you know you
  • 00:23:13
    were given this because you can handle
  • 00:23:15
    it it's like
  • 00:23:17
    it pisses you off you know
  • 00:23:24
    we like to think that anybody would do
  • 00:23:25
    the same that we do you know
  • 00:23:27
    i hope that's case but not
  • 00:23:37
    [Music]
  • 00:23:58
    it's going to come to a point where it's
  • 00:23:59
    not just us that are
  • 00:24:01
    physically moving them and helping with
  • 00:24:04
    them
  • 00:24:05
    that's probably always kind of a weight
  • 00:24:08
    on my shoulders
  • 00:24:08
    is what's that going to be like
  • 00:24:14
    press the button press it
  • 00:24:18
    press it
  • 00:24:32
    [Applause]
  • 00:24:36
    i don't see any blue shirts to you
  • 00:24:37
    [Applause]
  • 00:24:38
    [Music]
  • 00:24:41
    i think they're probably all over there
  • 00:24:54
    [Music]
  • 00:24:57
    nice job
  • 00:25:04
    let's do it
  • 00:25:23
    [Music]
  • 00:25:25
    good job
  • 00:25:37
    [Music]
  • 00:25:40
    [Applause]
  • 00:25:41
    [Music]
  • 00:25:47
    you going buddy
  • 00:25:56
    [Music]
  • 00:25:58
    [Applause]
  • 00:25:59
    [Music]
  • 00:26:09
    [Music]
  • 00:26:18
    [Music]
  • 00:26:22
    you
  • 00:26:27
    [Music]
  • 00:26:36
    uh
  • 00:26:39
    [Music]
  • 00:26:50
    um
  • 00:26:58
    [Music]
  • 00:27:04
    do
  • 00:27:08
    [Music]
  • 00:27:32
    oh
  • 00:27:42
    until we really find a diagnosis i feel
  • 00:27:46
    like i'm always going to have that
  • 00:27:48
    little glimmer of hope that
  • 00:27:51
    something will be discovered
  • 00:27:53
    [Music]
  • 00:27:55
    just to end that journey for that to be
  • 00:27:57
    over and
  • 00:27:58
    not have to worry about it because it's
  • 00:28:00
    always on the back of my mind
  • 00:28:02
    [Music]
  • 00:29:11
    you
Tags
  • Developmental delays
  • Undiagnosed conditions
  • Family support
  • Communication challenges
  • Therapy
  • Parental resilience
  • Medical journey
  • Eye gaze communication
  • Impact of music
  • Emotional struggle