Tuesday, November 6, 2012

Another Diagnosis Added to Our Plate: The Beginning



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I woke up this morning with so much on my mind.  Once again, I was mentally writing blog posts.  I have found that blogging helps me process through my thoughts and I can only pray that God will use our story and my processing time to bless you.  If you are in your own circle of disorders, I pray that you will find encouragement.  And if you are not, I pray that this blog series will provide you with a glimpse into the lives of those who do, enabling you the ability to know how to pray and bless those families who struggle with disorders day in and day out.   

Let me start at the beginning.

Bubs was born with a heart disorder.  At six-days-old he had open heart surgery followed by a month-long stay at the amazing Arkansas Children's Hospital.  After several set backs we were finally released to go home and told to "treat him like a normal child."  After an instructed several-month stint of isolation for fear of sickness, we slowly merged into the world with our "normal" child.  And after the initial shock faded away, we did regular things as a family of three including loving this precious bundle of joy. 

Around eighteen months, triggers started showing up and I found myself seeking guidance from other moms.  But, I found that no one could relate.  My friends didn't understand toddlers who threw themselves on the floor and screamed for incredibly long stretches of time over basically nothing.  They couldn't relate to little boys screaming inconsolably in the middle of the night.  I even read parenting books trying to figure out how to discipline our son out of these issues.  But, nothing worked.  I talked to our pediatrician but she told me to be consistent and to remember that toddlers understand a lot more than what we give them credit.

Not helpful.

We consistently found that Bubs would have fits or meltdowns over nothing - or so it seemed to us.  Loud or constant sounds like an egg timer put him into a tailspin.  If I poured his syrup in the wrong place or if a toy didn't obey his command.  He woke from nap time crying inconsolably and mommy could not love him out of it.  My heart knew that we were dealing with something.  I just didn't know what or where to turn for help.

At the age of two, the pediatrician became concerned with Bubs' speech development.  At that time we were expecting Baby #2 and we had just placed Bubs in a Mother's Day Out program in hopes that being around other kids would help his speech.  Even with all of the work we were doing, our pediatrician suggested speech therapy at age 3.   So we began weekly speech.  The therapist hoped to have him ready for Kindergarten but he tested out in six months. (Praise God!)

So, I closed that book thinking now that Bubs has "words" all of the meltdowns would cease.  Just the opposite.  The fits got longer and louder.  Up to 90 minutes Bubs would scream, kick the floor, and cry.  And I was unable to do anything to turn the train around. 

At four years of age, our pediatrician noticed fine motor delay and after listening to my concerns wondered if Bubs was dealing with some Sensory Processing issues.  We scheduled an appointment with an Occupational Therapist.  Testing showed he was up to fifteen months delayed in areas (and when you are four, that means you are the equivalent of a two and a half year old) and we received our first diagnosis - Sensory Processing Disorder.  Bubs was unable to properly deal with the senses swarming around his body. (I say "we" because when one child receives a diagnosis, the whole family does as well.)

This started two years of three-times-a-week therapy to teach his body how to handle senses, teach me how to help him through meltdowns and help avoid them, and improve his fine motor skills. 

Amongst this time, Bubs was also labeled as having Visual Perception issues.  Again therapy was suggested because we learned he flipped everything that he saw.  But I knew that an eighty minute drive several times a week added to our already crazy schedule was not going to happen.  So, I begged the doctor to train me so that I could do the therapy with him at home.  Praise God she obliged.  (Much of what I learned is included in the 4 and 5 Year Curriculum.)  And in a few months, Bubs organized what he saw!  (Praise God!)

Since Bubs has a summer birthday, we held him back from Kindergarten so he received an extra year of therapy.  But, Kindergarten quickly came and retesting was needed.  While the delays still existed, they were much less significant and we felt it best to start Kindergarten without any assistance to see where he could function on his own. 

The right decision?  Only time would tell. 

Tomorrow:  Diagnoses keep coming...


Is my story registering with you?  Please leave your thoughts and questions.



8 comments :

  1. Praise God for your stories and for the work you do with ABCJLM in your "spare" time! I have two young children, one of whom has Cerebral Palsy. I am a military wife living overseas, so that adds a sometimes frustrating spin on our struggles. We also have LOTS of therapy and doctors' appointments in our weeks. But, I find solace in the fact that there are others out there to encourage me, who know how much work it is to do this mom thing for kids with special needs and their siblings. Your ABCJLM curriculum has been a blessing for me in my journey with my older, normally developing child, as I'm sure it will for the journey with my CP child when she's a little older. God bless you, and thank you for sharing your journey!

    Sometimes, when it becomes difficult for me, I think of James 1:2 and how we're instructed to "consider it joy" to walk through our trials. I do consider it joy when I think how God trusted me to be a mom to my children and to use us a testimony to His goodness and His faithfulness. Keep at it, Heidi!

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    1. Thank you for your encouargement to me and I pray that you will continued to be encouraged through this blog series. I am going to doing a deeper study of James 1:2 tomorrow morning. Thank you for sharing this!

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  2. Yes your story is registering with me. I noticed my son's speech delay when he was about two and a half. One Dr said he had PDD the other Dr said he didn't. The PDD Dr wanted to out him on meds but couldn't tell me the side eeffects. We walked away from everything because of all this back and forth, not to mention the craziness with trying to get early intervention services with the public school district. At age 5 he had improved but there was still a delay. His Dr referred us for speech and occupational therapy. I've found that he has some sensory process g issues. I started using your curriculum with him when he was three and we loved it! We still sing 'do you know who made the world'. It's ssuch a relief that I've found your blog and curriculum and that someone can understand what we experience on a ddaily basis. Thank you for what you do.

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    1. So glad to hear that you enjoy the curriculum. I pray that God will lead you in your search for help for your son.

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  3. thank you for sharing your story. my son has just started OT for sensory issues. I am always touched by your words and your faith and am encouraged. You are blessings others (including me) in your faith and struggles. I am new to your blog but so glad i found it :)

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    1. Praise God that you have been encouraged. Thank you for encouraging me.

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  4. Stumbled on your blog today and want to thank you! Our daughter (4) also suffers from SPD, developmental delays, visual perception issues, receptive/expressive language disorder, and the list goes on and on. It's so nice to know we're not alone. God's blessing to you and your family and Bubs! Thank you!

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    1. Welcome to our blog and it blesses me to know that you were encouraged. I hope that you will continue to let us know how we can encourage you.

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The Our Out-of-Sync Life blog focuses on encouraging women to deepen their spiritual life, simplify daily tasks, and impress Jesus on the children around them.