Friday, April 18, 2008

Be Aware: Diagnoses and All of Us

What are Pervasive Developmental Disorders?
The diagnostic category of pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of socialization and communication skills. Parents may note symptoms as early as infancy, although the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to people, objects, and events; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns.
Autism (a developmental brain disorder characterized by impaired social interaction and communication skills, and a limited range of activities and interests) is the most characteristic and best studied PDD.
Other types of PDD include Asperger's Syndrome, Childhood Disintegrative Disorder, and Rett's Syndrome. Children with PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills and limited social skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common.(

That's just one definition of one cluster of developmental issues. Every one I looked up was similar, but different. Try googling a few of these:
ADD/ADHD, SID/SPD, ODD, OCD, CD, CDD, AS, PDD's, SDD's, SLI, SPLD, CAPD, Bipolar Disorder, LD's, and we're just scratching the surface.

Welcome to the confusing world of syndromes, developmental delays, mental illnesses and other neurological injuries or difficulties, not to mention acronyms. It is so confusing because no one really totally agrees exactly on where a particular diagnosis starts or ends or where it overlaps with another. Things are being re-categorized all the time. In children, these diagnoses are even more confusing, as their symptoms are based on observation, and vary from how they appear in adults. You can take a person with symptoms and get as many different diagnoses as there are people diagnosing. Add to this that from one year to the next in a child's development, they might present differently, and their diagnosis can change. Then, where does personality end and disorder take over? And here is another seeming contradiction. A child can be considered developmentally delayed or learning disabled and in need of special education, while at the exact same time, be considered a genius and in need of gifted services.

Here's the conclusions I've come to:
1. Neurological science is a new and fast growing discipline with lots of changes in nomenclature and understanding along the way.
2. People who seem "different" really have a lot in common with a lot of "normal" people out there. However:
3. Somewhere along the line, something caused them to be "more" of a particular trait or traits to the point that it has a negative impact albeit mild, moderate or severe, on their progress and functioning in the environment they live in. That's when it becomes a diagnosis, because they are now in need of some kind of support in order to function to the best of their abilities.
4. Somehow, all these syndromes and spectrum are interrelated and have symptoms in common. People tend to have a cluster of conditions, not one in isolation. Either the root issue causes the others, or somehow, it is all related to the same difference somewhere there in the brain, causing symptoms that may fit in an array of different classifications.
5. Time will tell where this all goes. Patience and aggressive determination somehow have to become bedfellows if you are living with a condition.
6. We all need to learn to understand and embrace the positive qualities people with different disorders have. These conditions are two-edged swords. One side is amazingly beautiful, the other side is miserably difficult. Don't think of those who suffer these conditions as just some kind of damaged goods, they are not. If you really look close, they are a lot like you and me.

Here's where the story gets personal. I have hesitated to say anything beyond the acronym ADHD in an open forum like this, where I can't read your vibes and respond to your reactions, because I don't want to change the way you look at my kids. They really are fun, whimsical, wonderful kids, but...I didn't just study everything under the sun for fun, I did it out of necessity. My kids are a little bit "extra" in different ways. Finding help for them has been a maze: at times a frustrating and frightening maze.They don't easily fit into one category, which is why I like to just call it the Espinoza Syndrome, or the Scooby gene for fun sometimes. The best general description as a group would be ADHD with Sensory Integration issues. Some other labels one or the other have been given are Dysthemia, Dyslexia, Depression, Generalized Anxiety, Speech Language Delay, Central Auditory Processing Disorder, some symptoms of, but not full blown Oppositional Defiant Disorder and Obsessive Compulsive Disorder, and my youngest two as PDD but considered off the spectrum at this point. In many circles, PDD means you're on the spectrum. See what I mean about confusing? For now, it's for lack of a better term. We will wait and see, somewhere kitty corner to the spectrum for now. Technically, it doesn't matter as long as we can understand and help them grow. Maybe another day I'll describe what this looks like, but today I'm trying to make a point about diagnoses. Diagnoses are not set in stone and are not death sentences, and are not meant to stigmatize people. They shouldn't be a reason to discriminate, but a means to understand someone and ways to find things that work for them and access help for them.

We may sound like a nut house to you when you read our little list. But I see it as just one neurological issue that is causing this "charm bracelet" of acronyms as the OASIS people call it. Many kids on the spectrum are collectors of diagnoses too. They may be both on the autism spectrum and in the ADD bunch too.
In my children's case, they aren't severely affected like many children I've seen, just enough to need some help to lead a normal life. I don't think they should see themselves as disabled or limited, but as unique, wonderful people with a few extra challenges. I am sure that they are all gifted and intelligent. With the help they are getting, they are pretty much like any other kid out there. Greater than average blogging material maybe, and adorable. Without help, things would be miserable around here, this I know from experience. We're lucky in our case that we can do a lot at home for them.

It's true, our house is a circus, a zoo, a wild place but it is also a place where there is love and progress and I am amazed at how wonderful these guys are who stretch me to my very limits and sometimes beyond. Thanks to them, I have had to learn a little more than the average parent. Sometimes I resent the extra work, but there is extra joy. There are so many parents out there facing MUCH greater challenges. They really need help and understanding from those around them. It's way too hard to do alone, in a vacuum.

So, maybe this is more than an autism post, but the autistic community belongs to this greater community that is out there. The parents of the kids that are "more" than your average kid. Thanks to my children, I can begin to understand and empathize with what other parents and children are dealing with. I want to reach out and help. I want them to be understood and supported. I know how much they need it, because my littler challenges have left me treading water and almost drowning on occasion. My children have taught me to be aware of how wonderful and amazing the human brain is and how unique but similar we all are. Please take the time this month to get to know your autistic neighbors and learn a little more about what goes beyond the stereotypes. Once you understand them, you will be a better friend and your life will be enriched with your new understanding and ability to reach out to them. There is a whole range of different faces of autism, from the ones with Asperger's, who use our words almost seamlessly and just seem odd or difficult, to the silent who only talk through their actions. If you want to read a good post to get you started, click here. Tell me you don't know someone like this man, or have some traits in common. I dare you. :)


caramama said...

This was another wonderful post. I'm very inspired by your posts to help people understand and for those with acronyms to be understood. Thank you for writing about these things.

Kalynne Pudner said...

Very enlightening. I'm just being introduced to some of these things; I love the way you put it in terms of "having a little bit more."

Pam said...

I agree that there are way too many acronyms and names of disorders, is all confusing. Since I am a teacher, I often get kids with labels and to be honest....I prefer not to know right away. I often have a kid with ODD label who I have no problems with. But if I have it in my head that this child will be defiant, then it might deter my image of that child. Anyway....I'm sorry you have been hesitant to share this with wrote a great post here!

OHmommy said...

I used to be a teacher... and could never keep up.

This is a wonderful post and I hope people can understand.

Burgh Baby said...

Great post. A few family members are special needs teachers, so I've been fortunate to get to hang out with some extra cool kids. Life is better for having met them.

TheOneTrueSue said...

Hooray for you for diving in and delving into it - for trying to understand as much about how to work with each of your children, helping them to navigate through life with that little bit "extra." And your children are obviously wonderful kids. Great post.

Carrie and Troy Keiser said...

Thank you for your time and energy to help educate those of us who have been in the dark about these issues. I have done some research on ADD/ADHA Because when my oldest was in 2nd and 3rd grades I had teachers insist I put him on medication for his inability to sit still. After much research and observance, I concluded that, for my son, it was not the right choice. He can and does achieve good grades, he can focus on the task at hand, he devours books... all I could see that put him in the category was he didn't like to sit! I can understand frustrations and I can see the good that meds do for others. Each of us has to do what we feel will best help our own children in their unique situations.
My little Scotty has a lot of OCD tendencies... clothes tickle him and he can't wear them, sometimes his PJ's are scary, most nights he refuses to even wear jammies to bed opting instead for a clean set of clothes, he hates water on his head, he can only use Dad's brush, he can't stand loud noises like lawn mowers and chain saws, but he loves the ride the 4-wheelers! Kids are all the same and different in their own special ways! After-all there only ever has been One perfect person! :)