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Muddling Our Way Through Developmental Disorders or What's Going On With My Child?

This beautiful little girl is the youngest of my five children. She is the one who makes me break out into a sweat any time we venture into a grocery store, doctors office, library (or any other new location). She is the angel who needs her blankets on in a specific order, her favorite stuffed toys (pandy and puppy) each on their side and six rounds of “huggy and kissy” before she will settle into bed.  She is possibly one of the rising numbers of children on the Autism Spectrum.

Around age two, we begin to suspect that we weren’t just dealing with a more difficult or strong willed child.  At that time, I had no idea what we were dealing with and I kept telling myself “this is just a phase, it’ll pass”.  But the phase never passed.  Behaviors became more pronounced, social interactions and transition became exceptionally difficult.

Our “Little Critter” as she is dubbed in the online community is exceptionally bright, active and speaks beautifully so Autism Disorders were not considered in our early well child checks.  She walked at 7 1/2 months unassisted and has never stopped since, she wasn’t a cuddly baby from birth… rolling and scooting around on her belly by 2 1/2 months.  This was a baby who wanted to go.  I figured she was eager to play with her big sisters and therefore had no desire to be a baby.  She hit all the milestones on time or early and boy was she messy!  Always touching, feeling, running, jumping, twirling.  Now we know that she has sensory processing disorders which cause her to seek stimulation in some situations and over-react to stimuli (lights/noise) in others. We began to learn about Aspergers Disorder and Sensory Perception Disorder and saw our child.

As we transverse this world of figuring out what is going on with this adorable little girl, I’m faced with many struggles and decisions that no parent wants to face.  I know that proceeding with a medical diagnosis will forever add a label to my child.  I also know that this is a label which will allow us to find the right treatments so that she will be able to function in everyday environments.

Many parents are looking for answers, a why or how this disorder affected their child. I’m not on a mission for answers (at least not yet).  I’m still in the process of accepting, understanding, exploring and grieving.  Yes, accepting that there is something going on, something is “wrong”  (different, challenging) with ones child causes us to grieve.  The life we envisioned for our baby is altered dramatically, our life is forever changed.

I read about the vaccine debate, diet and supplementation, alternative therapies, DAN! (Defeat Autism Now!), environmental triggers and I learn, I process, I think, I consider.  Yes, this child was vaccinated (mostly on schedule) but there isn’t one defining moment that causes me to think there is a correlation.  I do believe that vaccines (or an ingredient in them) can trigger ASD in children who are prone to the disorders.  I know there are children who experience brain swelling following vaccination and that brain swelling can cause developmental delays (sometimes ASD).  My child didn’t exhibit any signs of brain swelling or illness following her vaccines.  However, I have noticed a significant increase in behaviors since her four year vaccines (which included the controversial MMR).  Is this a coincidence?  I will probably never know.

For now, we learn to accept… we learn to help… we learn how to teach this little wonder how to function in every day situations… we learn what makes her tick… and we strive toward a beautiful future.  Developmental Disorders can happen in any family… we learn to not place blame.

Comments

  1. I wonder if her dad is an older man?

  2. Jamie, thank you for sharing your thoughts on something that is private to many families. Very well written.
    Your daughter is a blessing in her differences. Good for you for your bravery and acceptance!

  3. Jamie, I needed this post! My son has an expressive language delay with no signs of autism, mental retardation,etc. He’s a smart,sweet little boy, just a natural late talker. I love him dearly. We have avoided labels and avoided school offered “specialists” with no expertise other than a great SLP. We are about to embark on a very expensive journey this summer to Nashville to take him to an expert in the field. I try to enjoy my son for who he is, a remarkable little boy who has endured so much in his short life (open heart surgery at 4 mos.). It sounds like you are in a good place, and I really appreciate you sharing. Please keep us posted on your darling little girl.

  4. Stephanie says:

    Jamie,
    I am going thru much of the same thoughts regarding my beautiful three year old son. He has yet to have an official diagnosis but has received birth to three services. We have recently been told by his new preschool that they think he should have extended day which is only for those on the spectrum or have a pending diagnosis. I knew that this was likely but secretly hoped that he would “catch up” with his peers. Yet a recent trip to a neurologist whom is a specialist with people on the spectrum “unofficially” believed that my son was not on the spectrum but had a speech delay with anxiety issues. My son currently gets all the services he would be getting with a diagnosis so we have not felt it necessary. I have been struggling with acceptance but irrationally feel that I am somehow protecting my son by not getting the diagnosis. I wish you well thru this process and thank you for the post as it is the first time that I have made this public – little steps.

  5. Jennifer says:

    Your daughter sounds like my 5 year old son – a sensory seeker to the max. If you haven’t read Sensational Kids by Lucy Jane Miller, I highly recommend it.

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