World Pediatric
Stroke Association

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The Earlier the Better for Our Children

June 2, 2016

‪#‎TBT‬: In regards to Brendon's stroke, before he was diagnosed, I was told on two separate occasions to wait to see what happens. If it doesn't improve than we will address it later.

 

The first time I was told to wait, Brendon was just 15 months old. His foot was turned out and under. He had no official diagnosis - even though he had already endured a stroke.

 

At the time, I didn't know that his preference for his left hand was an issue - HUGE RED FLAG. Neither did the specialist examining my young son.

 

Addressing only the foot-turn, he stated, "If Brendon's foot doesn't straighten out and he still walks this way by the age of 2 bring him back in, then we will address it."

 

The second time I was told this statement, Brendon was just 31 months old. He had extreme difficulty speaking, it frustrated him. He had so much to say but was void of the ability to speak fluently.

 

"If he still has difficulty with expressive speech by the time he is 5 years old we can address it then." This statement after he was tested for Special School District services in St. Louis County, Missouri.

 

The problem (not a horrific problem to have but kind of ridiculous, nonetheless) was that his "receptive" speech (his ability to understand what is spoken) pulled his "expressive" speech score up, creating an overall "average" for speech for his age.

 

Therefore, he didn't qualify for SSD services. (Let's just say that this was not acceptable and before I left the meeting he had services.

 

In fact, today, at the age of 10, Brendon, himself states that his speech is probably the most frustrating effect of the stroke - put aside his right sided weakness, ongoing tightness and the need for weekly PT and OT.)

 

This article hits SO close to home, because I KNOW in my HEART OF HEARTS Brendon could have benefited greatly by intervention even earlier intervention in his development. I was able to start some therapy services without a diagnosis at the age of 17 months; however, with a diagnosis he would have qualified for so much more.

 

The diagnosis of a ‪#‎perinatalstroke‬ came at 19 months, and I still had to fight for services for him!

 

WE ARE OUR ‪#‎CHILDREN‬'S BEST ‪#‎ADVOCATES‬!

 

For the article:  Too Small To Fail

 

 

 

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