March 5, 2012

Slowly moving forward {evaluation results}

After assessing the results of Friday's appointment, I became very aware of the fact that I had not given God all the pieces of Grant's situation.

Backing up...

Grant was not diagnosed with autistic disorder... well, not exactly. Instead, we walked away with a diagnosis of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). While PDD-NOS may technically fall into the mild end of autism spectrum disorder, it does not always provide the same level of services. (However, I am still uncovering what services Grant may qualify for with a PDD-NOS diagnosis.)
. . . . . . . . . . . . . . . . . . .
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.

PDD-NOS may be thought of as “subthreshold autism," or a diagnosis one can give a person who has “atypical symptomatology.”  In other words, when someone has autistic characteristics but some of their symptoms are mild, or they have symptoms in one area (like social deficits), but none in another key area (like restricted, repetitive behaviors), they may be given the PDD-NOS label. (You can read more at http://www.autismspeaks.org/what-autism/pdd-nos.)
. . . . . . . . . . . . . . . . . . .

Long story short: In Grant's case, the doctor stated that while he fell two points into the mild end of the spectrum, she firmly believed it was because of symptoms related just to Fragile X Syndrome (which, frankly, is a severe diagnosis by itself) and not to autism. In her professional opinion, she could tell the difference. (You can read more about the relationship between autism and FXS here: National Fragile X Foundation: Autism and Fragile X Syndrome.)

The doctor went on to explain that when the DSM-5 manual comes out in May 2013, PDD-NOS will go away. Also, with the updated manual, intellectual delays will be excluded as one of criterias for autism (you can read more about that here: The 4 Main DSM-5 Autism Controversies).

I was advised that the next step is to have Grant's IQ tested again (the last IQ test was conducted when Grant was 20 months old). If we can document that Grant is cognitively impaired, we may quality for more services (outside of an autism diagnosis).

To this day, Grant's cognitive impairment is still the most painful part of his Fragile X Syndrome. As I drove home from the appointment, I realized that I still had not handed that part of my sweet son over to God - not completely. Maybe, someday, there will be a significant treatment that will help Grant's IQ (in fact, there is some amazing research and discoveries being made), but I must give it over to God and trust Him for Grant's future.


Grant is a beautiful masterpiece of the Creator. While his future seems so uncertain to me, it is very clear that he is being used for God's glory and God has a purpose for all of Grant's days.


For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand... Ephesians 2:10

2 comments:

  1. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be (Psalm 139.16)

    Karen, it used to be that reading Psalm 139 was a bitter pill for me to swallow. "How can you say that?! You DON'T know!" But just because the pill was bitter doesn't make them any less true, and in time, they became a balm for my soul. All of Grant's days have been ordained for him--all events quirks, deficits, talents, joys, and sorrows. And God works ALL things together for the good of those who love him. Nothing is ever wasted in God's economy--even Fragile X, PPD-NOS, or whatever else we come up with to try to explain the uniqueness of humanity.

    Remember, all these "standards" are defined by those who fit the standards. Where's the fairness in that? What we see as a deficit could in fact be God's and Grant's greatest treasure (and I'm talking to myself here too!) I pray you remember this on your worst days. On the days when all you can do is cry, may you find the arms of Jesus strong and tender, and his shoulder pillowy soft.

    Love,

    Jill

    ReplyDelete
  2. Well, PDDNOS is going to get the ax on May 2013.

    ReplyDelete

March 5, 2012

Slowly moving forward {evaluation results}

After assessing the results of Friday's appointment, I became very aware of the fact that I had not given God all the pieces of Grant's situation.

Backing up...

Grant was not diagnosed with autistic disorder... well, not exactly. Instead, we walked away with a diagnosis of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). While PDD-NOS may technically fall into the mild end of autism spectrum disorder, it does not always provide the same level of services. (However, I am still uncovering what services Grant may qualify for with a PDD-NOS diagnosis.)
. . . . . . . . . . . . . . . . . . .
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.

PDD-NOS may be thought of as “subthreshold autism," or a diagnosis one can give a person who has “atypical symptomatology.”  In other words, when someone has autistic characteristics but some of their symptoms are mild, or they have symptoms in one area (like social deficits), but none in another key area (like restricted, repetitive behaviors), they may be given the PDD-NOS label. (You can read more at http://www.autismspeaks.org/what-autism/pdd-nos.)
. . . . . . . . . . . . . . . . . . .

Long story short: In Grant's case, the doctor stated that while he fell two points into the mild end of the spectrum, she firmly believed it was because of symptoms related just to Fragile X Syndrome (which, frankly, is a severe diagnosis by itself) and not to autism. In her professional opinion, she could tell the difference. (You can read more about the relationship between autism and FXS here: National Fragile X Foundation: Autism and Fragile X Syndrome.)

The doctor went on to explain that when the DSM-5 manual comes out in May 2013, PDD-NOS will go away. Also, with the updated manual, intellectual delays will be excluded as one of criterias for autism (you can read more about that here: The 4 Main DSM-5 Autism Controversies).

I was advised that the next step is to have Grant's IQ tested again (the last IQ test was conducted when Grant was 20 months old). If we can document that Grant is cognitively impaired, we may quality for more services (outside of an autism diagnosis).

To this day, Grant's cognitive impairment is still the most painful part of his Fragile X Syndrome. As I drove home from the appointment, I realized that I still had not handed that part of my sweet son over to God - not completely. Maybe, someday, there will be a significant treatment that will help Grant's IQ (in fact, there is some amazing research and discoveries being made), but I must give it over to God and trust Him for Grant's future.


Grant is a beautiful masterpiece of the Creator. While his future seems so uncertain to me, it is very clear that he is being used for God's glory and God has a purpose for all of Grant's days.


For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand... Ephesians 2:10


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2 comments:

  1. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be (Psalm 139.16)

    Karen, it used to be that reading Psalm 139 was a bitter pill for me to swallow. "How can you say that?! You DON'T know!" But just because the pill was bitter doesn't make them any less true, and in time, they became a balm for my soul. All of Grant's days have been ordained for him--all events quirks, deficits, talents, joys, and sorrows. And God works ALL things together for the good of those who love him. Nothing is ever wasted in God's economy--even Fragile X, PPD-NOS, or whatever else we come up with to try to explain the uniqueness of humanity.

    Remember, all these "standards" are defined by those who fit the standards. Where's the fairness in that? What we see as a deficit could in fact be God's and Grant's greatest treasure (and I'm talking to myself here too!) I pray you remember this on your worst days. On the days when all you can do is cry, may you find the arms of Jesus strong and tender, and his shoulder pillowy soft.

    Love,

    Jill

    ReplyDelete
  2. Well, PDDNOS is going to get the ax on May 2013.

    ReplyDelete