Tag Archives: PDD-NOS

A House Full Of Love

14 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today is Guest Post Exchange Day! I am honoured to introduce you to a fellow special needs mom, who is not only an awesome blogger, but also an awesome friend. Mimi has not one, not two, but five children with special needs. That would sound daunting to anyone, but Mimi wouldn’t change her life for anything.

Hi!  I’m Mimi, mom to 5 great kids, all with special needs, but we don’t focus on that.  We focus on their achievements, their triumphs and the love that they have for each other.  Sure, they fight just like any other siblings would fight but at the end of the day the love is still there for each other.  My oldest daughter is 24 and diagnosed with PDD-NOS (a form of autism) and is an unmedicated bipolar by her choice.  My next daughter is 22 and was born with Down Syndrome, hydrocephalus, PDD-NOS and acanthosis nigricans, she’s my spit-fire child.  Next is my soon to be 16 year old daughter who was born with spastic diaparesis cerebral palsy, she also has Asperger’s Syndrome, bipolar with psychosis, anxiety disorder and an eating disorder.  Next are my two boys, my first son is 10 (11 in June) and for some unknown reason he is cognitively impaired, he too has PDD-NOS and a mood disorder.  My youngest son is 9 (10 in June) and he was born with Fetal Valproate Syndrome, static encephalopathy (due to a traumatic birth), he has PDD-NOS and a mood disorder.

Raising special needs children has its ups and downs, but I wouldn’t trade my life for anything the world has to offer me.  My children are the reason my world rotates on its axis.  Some people call me a mother polar bear because I am so protective of my children, but who else is going to protect them besides me?

My boys are the best of friends, they are great playmates for each other and I hope and pray that the bond between them stays forever.  It’s similar to the bond between my 2 oldest daughters.  They are close because when they were young girls, I was a single parent by my choice, so it was just us 3 girls against the world.  Until I met my husband in 1994, Bethany was 6 and Lauryn was 4 and Jon has been their daddy ever since.

What entertains my kids?  Different things…  My boys are video gamers with their dad, they each have either their PSP’s or PSP Go’s or in Jons case his PSP Vita, but they all three will gang up on the bed and be gaming, ignoring everything else that’s going on, whereas Maurra my (almost) 16 yr old loves doing research on various things, which is very common for children diagnosed with Asperger’s Syndrome, right now she’s focusing on historical events.  Lauryn is crazy for Justin Bieber and loves to watch horror shows in her bedroom.  Bethany is my crazy football fan – well I’m pretty crazy for our Green Bay Packers also, so we tend to watch football together and we DVR the games so we can watch them through the week.

Our social outings look a little different than most.  First of all, my 3 youngest kids can’t handle car rides very well, so our trips have to be short in nature, and there has to be a reward at the end of the trip.  Lauryn enjoys going to her adult day program 4 days a week, but that’s about the extent of her traveling comfort.  She loves to dance in the truck which is fun and the cars around us seem to be her audience.  Bethany (my oldest) and I tend to do mother-daughter outings or she will go with me if I have to run errands.  It’s hard to break things up so the kids can handle everything, but in the end it’s for the best for them.

The boys are getting ready to start their 3rd year playing Miracle League baseball, which is baseball strictly for children who are disabled.  I volunteer my time with the league as the team coordinator and absolutely love watching all of the kids play the game.

Like I said before, I love having special needs children, and now we are looking into adopting a special needs child because there is more room in my heart for more children, but I can’t have them myself anymore.  So we are looking into a special needs adoption.  I hope it all works out for the best.

Well, thank you for letting me share my family with you.  Have a great day!

And thank you, Mimi, for sharing your family with us!

Mimi has a great blog at Wife… Mom… Writer… All Blessings. She can also be found on Twitter @Gigi_S.

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Autism Diagnosis: Changing The Landscape

13 Jan

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.