Monday, February 28, 2011

NEW NORMAL

The purpose of this post is to give you a long overdue update on Miles. I have started several update posts over the last year that were never completed. I think because I struggled so much trying to figure out how to update you on my sweet, precious gift that had these quirks that I just couldn't figure out. Let me try and catch you up...

When Travis placed Miles into our arms on February 15, 2010, we were so happy. We were excited, thankful & overjoyed that we could finally hold him, touch him, hug him, kiss him. But in the same moment, we were surprised to see how far behind he was. At the time, we just thought physically. But in the last year, we have learned that is not the case.

We received several updates on Miles before we traveled to Ethiopia.
We knew he wasn't meeting all the developmental milestones for his age, but that didn't surprise us. We kind of expected it.

All of our updates of Miles included the phrase 'laid back little guy', which he absolutely is. But when you spend the first 8 months of your life in an orphanage type environment, 'laid back little guy' is not what you want to be.

If you are the one who will lay there completely content, then you are left to just lay, because some of the other babies, those whose updates included phrases like 'very determined', 'go getter', 'very active', won't.

The back of Miles' head was completely flat and bald from laying in his bed.
He struggled to hold his little head upright.
His movements were real jerky and he was so wobbly.
He could roll once in each direction.
He wouldn't bear any weight on his legs.
No sitting, no crawling, no pulling up.

After we returned home, we started working with him.
It wasn't long before he was sitting without support.
Then he started crawling. Then pulling up.
And after being home 7 months he started walking.

At this point, we were starting to think that he had pretty much caught up.
I mean, he had come so far.

But he had little quirks.
Things that he would do, or wouldn't do, that just didn't seem quiet right.

At first it was things like...
> unable to hold bottle up by himself
> unable to drink out of a sippy cup
> doesn't like to be held or cuddled
> shakes head back and forth when upset
> freaks out when his diaper is changed

Then, the older he got, we were seeing things like...
> avoids eye contact
> seems to be in his own little world
> difficult to engage
> frequent head banging, biting, pinching
> wanders around the house aimlessly
> doesn't interact with peers or adults
> very busy doing nothing
> doesn't respond to his name
> doesn't talk
> very aggressive behavior
> some regression in sounds and interaction
> bumps into things on purpose
> walks around backwards until he hits stuff
> walks around with his eyes closed until he runs into the walls
> spends most of the day upside down

If I would mentioned his quirks to family or friends, I always got the same response, "That's normal for a kid his age."

And that is partially true.
Some kids his age might not talk yet, they might bite, they might get upset when they can't have their way. But all the things we were noticing in Miles were far from normal.

I started voicing my concerns to our pediatrician when Miles was about 12 months old. Just telling him things I was noticing and the struggles I was having with him. At his 15 month check-up, I had new concerns, and at his 18 month check-up, his doctor felt like he should at least get some evaluations done.

After meeting with several different therapists, we finally have some answers to what is going on with Miles. For the first time, I feel like I'm not just going crazy, like it's not all in my head. As a mom, when something isn't right with your children, you just know it.

Miles is showing all the signs of struggling with Sensory Processing Disorder (SPD), which is a neurological disorder that affects the path between the senses and the brain. Basically, information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

Miles is about 14-17 months behind in his speech, which puts him at an age equivalent of a 3-6 month old in some areas, and a 6-9 month old in other areas. His receptive and expressive language skills are severely delayed. He spends 45 minutes, 2 times a week in Speech Therapy. He performs below average in the areas of fine motor skills, social functioning, sensory processing and self-care. In those areas, he is about 10-12 months behind, which puts him at an age equivalent of a 8-10 month old. He spends 60 minutes, 3 times a week, in Occupational Therapy. His gross motor skills are still delayed and he will spend 60 minutes, 3 times a week in Physical Therapy once I finish jumping through those hoops. He is also suppose to be evaluated for Developmental Therapy, but we haven't scheduled that yet.

The world of therapy is a very new one for us. Taking Miles to therapy is my new part-time job. Learning to parent a child with SPD is my new full-time job. We are learning a ton, reading as much as we can, and doing everything in our power to help Miles become all that the Father designed him to be.

3 comments :

  1. Thank you so much for posting this! Now, we know how to pray specifically for the Harmon family. Miles is one blessed little man to have you for a mom! There are many times in my new parenting role where I've remembered things you've said about parenting or just thought on ways I've seen you interact with Alex while in Orlando, and I've aspired to be just like you! :-) Seriously, you are one of the mothers that I pray I can be even just a tad-bit like for Ella. We can't wait to meet Miles one of these days!! Thanks for the update and we love y'all!

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  2. Your post is perfect. It sums up sweet Miles to a T! He has a long road ahead, but before you know it you'll be begging him to be quiet! You do an amazing job with Miles by making sure he gets all of the help he needs. Love you all!

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  3. Girl, we have much to catch up on. Deac was also diagnosed under the SPD umbrella. His has been mostly under the speech category--we were doing speech therapy for several months until we hit a major wall with insurance--would love to know what you are doing in that area. Praying for you and Miles as you navigate through this!

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