Wednesday, June 22, 2016

A Diagnosis DOES Matter


I've debated on writing about this for a while, mostly because I don't feel it's completely my story to tell. But on the flip side, I feel like if I can help another parent, I should.


Kayden was my first baby and came to us at 7 months. He's always been my high energy, rough and tumble textbook definition of a boy. He plays hard, laughs hard and is seriously the most lovable little guy ever! 

But the older he got the more red flags we would see from time to time. Milestones were being met, but my gut told me something wasn't "typical." Finally when he turned three last August he didn't meet the milestones for language development and social skills. It sounds terrible, but I was overjoyed, because it told me my gut was right all along. 

After a referral process and some testing Kayden got to start pre-school as a 3 year old with an IEP for help in the areas he was struggling with. Within weeks I saw improvement with his speech and the way he interacted with his brothers, I was thrilled to see progress. When his quarterly goal chart came around he was ABOVE the aim line of where they wanted him to be! Talk about some proud parents over here, I cried tears of joy!

As well as his speech and social skills were coming along there was something I couldn't ignore, and it wasn't improving. He was SO rough without trying to be and his energy was through the rough! Now I had a bit of parental denial, and just kept telling myself it was because he was only 3 years old and a high energy boy, but then I attended a training and my world was flipped upside down. 

The training was on Sensory Processing Disorder, which in my mind screamed Autism, but isn't. It is defined by WebMD as, "...
a condition in which the brain has trouble receiving and responding to information that comes in through the senses." It is a spectrum disorder where children can be high-sensory seeking (jumping off couches, pushing, lack of safety concerns) or low-sensory seeking (clothing tags hurt, aware of all noises/lights, etc.). Many sensory symptoms of Autism overlap with SPD, as well as many of ADHD connect with SPD. There is only a tiny portion of cases where all three meet. It has been shown that therapy addressing SPD has helped to decrease problems associated with ADHD. (Holy acronyms! I apologize.)
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I immediately sent a text to Kayden's preschool teacher telling her she needed to look it up and let me know her thoughts. It quickly turned into an Occupational Therapy evaluation and a trip to the pediatrician's office. We had a diagnosis, Sensory Integration Dysfunction (because SPD can't stand as its own diagnosis), with a heads up he'll probably also be diagnosed ADHD down the road. Does this mean he is broken? No. Does this mean he will always have an IEP or need therapy? No. Does this mean we took steps to be proactive parents? Hell yes!

Since he was officially diagnosed, he can receive private services now and insurance will cover it, this wouldn't be possible without the label. He gets to go to speech therapy, occupational therapy and a social-skills play group, which he loves! If you met him you would have no idea of the struggles we deal with from time to time. You might notice he's rough and sometimes hard to understand when he talks, but other than that you would just think he's a super cute lovable almost 4 year old boy.

Often times parents are scared to diagnose their child, because they think that it'll just get better on its own. Or that if they label them, the world will label them and it will reflect back on them somehow. Or kids will pick on them. Or people will think that the parents caused it, because of "poor parenting." I just don't understand it. We don't have him wear shirts that say, "I have an IEP and am diagnosed SID."

We live in a society where everyone assumes that doctors are just out there throwing a diagnosis around, like roofies at a rave. That is not the case! Do some people abuse 'labels'? Yes. But a vast majority of children are getting a diagnosis because doctors are learning more and more about spectrum disorders, and because of that, more and more people fit into it and are receiving services.


A parent's intuition is a crazy thing! We could've continued to wait and watch him fall farther and farther behind his peers, instead we took action. We chose to pursue getting an official diagnosis so that we could provide Kayden with the best tools to help him thrive! He is not the diagnosis, he's our crazy, warm hearted, fun loving little boy; but without it we wouldn't be doing as well as we are! 

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3 comments:

  1. The same thing happened with us. My husband had a "feeling" that something wasn't right with our son and he was diagnosed with ASD. Its a time consuming process to go through, but worth it in the end. My son is 3 and had a good 6 months of home services through our school district, will be attending special ed preschool this summer, has started speech therapy, and may be able to be in an integrative preschool class this fall. Its amazing how much progress kids can make with just a little help! We're hoping to start ABA as soon as a spot opens up. The wait list in our area is ridiculous.

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  2. Good job, mama! It is hard to "label" your child because it changes the future you anticipated for your child or you worry it pigeonholes them, but it is much better to get accurate treatment and therapies if necessary. My daughter was casually diagnosed with ADHD, and it was hard to think that she is anything less than normal or perfect, but it helps me understand how to teach her better, how to prepare her for a world that won't cater to her need to change topics every five seconds, lol, and help her learn how to focus her energy and attention herself as she matures. I don't know if medication or therapy will be in the cards for her, but for now, I at least am aware that we need to adjust how we homeschool for her and am keeping an eye out, because I wonder if her issue isn't more sensory than attention. Thanks for sharing your experience!

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  3. So glad you followed your instincts and are now able to provide him whatever support he needs.
    He's such a cutie and so lucky to have parents so invested in his well-being, xo

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