A Green Flag Parent in a Red Flag World

Last May, I posted an article written by Dr. MacDonald called Red Flags vs Green Flags.  I find this ironic and kinda funny because I had discovered this piece well before I knew anything about Dr MacDonald and Play to Talk/CP.  It had been posted on another site, and to be honest, it just spoke to me. 

I thought of it again this week after talking at length to a friend of mine dealing with some tough issues with her child.  She was very discouraged about the messages she was getting from people working with her child.  They were highly negative, and most certainly do not match her (or mine for that matter) perception of her child.  Whenever she talks about something that is new and positive, she seems to get the "Yeah, but..." response.  You know, it goes something like this...

"Yeah, but really he should be doing X, Y, and Z... and well, he is only at C, D, and E...(insert dismissive shake of the head)"

"Yeah, but he never does that at school... and really, he is too far behind his peers to catch up"

"Yeah, but .... (and then that weird look that says they clearly think you are in denial about how terribly, awfully disordered your child is and really you should just come to grips with their assessment of his skills)

The thing that just killed my friend (and me too, for that matter) was that it seemed to her that even suggesting that her child was making any progress as akin to her being in denial about how bad he was.  When she spoke about progress at home, or how he could do certain things in other environments like church or daycare, they doubted her.  She felt dismissed, like the progress she was seeing was not real because they didn't see it.  When you are a parent of a child with special needs, it can feel like you are bombarded with negative messages about how your child is lacking.... how they are "less than"... how they (and you) are failing.  It can make you feel alone and powerless and unsupported.

It is very hard to be a Green Flag parent in a Red Flag world.

So I posed this question to the Communicating Partners group:  How do you deal with the Red Flag people? You know, the ones who say "Yeah, but..." whenever you say something hopeful, or talk about amazing progress, etc etc... Who always seem to look at deficit instead of progress? Who just can't be positive, or must temper every positive thing with something negative? Like being hopeful and focused on the positive is a disease?

And Dr. MacDonald responded.  I felt like I had to share it.  Here is (in part) his message to us parents:

Believe in Yourselves More than Professionals!

I say further that you need to do what evaluators only rarely do-- and that is focus on what the child can do.  Professionals often seem to think that to justify their job they need to identify all kinds of mistakes your child makes.  I claim that your child does not make mistakes, they are developmental growth steps.  There are no mistakes, just practices for success.

Professionals would go much further with our children if they would take a developmental approach by identifying what the child can do and have him do more of that.  Stop putting yourself down because you have a child doing less than same-aged peers. That does not make him wrong, and it does not make you wrong.

How often do you feel wrong when someone accuses your child of being wrong???

Don't be blown away by negative evaluations any more than if someone said you have the wrong kind of car, or dress or house.  Be proud of what you have done for yourself.  That will help your child be proud of what he can do.  If he is not proud, he will do less and believe less in himself. (Attitude matters!*)

Realize your child is learning from you all the time and he is learning much more than what you say or try to teach him, he learns how to believe and think by watching you.

STOP BELIEVING PROFESSIONALS KNOW MORE THAN YOU DO ABOUT YOUR CHILD. THEY DO NOT.

In fact they cannot know who your child is and what he does and can do unless they watch him with you and get a thorough report on what he does at home.

Also, professionals are usually asking the wrong questions.  They seldom know much about early development and what children need to do before they're in school (and how to encourage it*).  Skills such as social play, imitation, turn taking, deliberate communication, initiating, responding. listening, and many others are seldom evaluated and yet they are the keys to learning and communicating.  Realize that you often buy into a system that is keeping your child down.  Start seeing how and when you are doing that, such as when you push your child to do things he is not ready for, making him avoid you and others by acting in ways he cannot try to do.

Be more focused on what your child can do and get him to do it more.  At the same time, focus on what you do when he is performing well  -  keep doing it.

Be sure he is your partner more than your student. 
And ask yourself: WHOSE CHILD IS HE OR SHE ANYWAY?


When was the last time a professional gave you a pep-talk like THAT?
I adore Dr. MacDonald.  Thank you!


* my comments based on other posts from Dr MacDonald

Back to Our Regularly Scheduled Program...

I can't talk about it.  You know, IT.

 I really want to talk about IT.  I really do.  But for now, I cannot say much.  I can say there will be another meeting.  A meeting with more people, the same people and different people. Important People.  And until that meeting, it would be unwise to talk about IT here.  You know, just in case They are reading this.  And They might be...  who knows, maybe They are trying to learn more about Us.  About who we are.  About how far we will go.  And if I talk about IT here, They will know that we will go all the way, as far as we need to, because our son is worth it. 

So, of course, I can't talk about IT.

Instead, I might talk about how we have started re-examining our committment to the public school system.  How this system is appearing to be more and more broken.  How we fear for our son in a system that fails to protect their children, their students, and may fail to do the right thing (yep, that's our district!  Seriously, people, there is NEVER an excuse for this type of hateful behavior; I don't care what your beliefs are.  Teaching compassion anyone??)

But I think I will just close here with two pictures of the J-man, because he is cute and full of promise.

I am coming out of my shell!

A Letter to Myself and Others Like Me

You are not 'just the parent'.

It is easy to feel that way.  Like you are 'just the parent'.

In the beginning, you bought the books.  There are a lot of books.  Books about baby care, books about development.  Books about sleeping and eating and pooping.  Books about raising children.  And those books told you about normal.  About typical. You took some classes, joined some new parent groups.  You felt prepared.  Ready to take on the challenge of parenthood, to love and raise your beautiful child.  And you learned what you needed to learn.  How to change diapers, how to feed your child, how to soothe him. You were building your story together.

But then at some point you discovered you were not dealing with typical.  With 'normal'.

And the Fear and the Doubt set in.  You went out and found the experts.  Doctors, therapists, teachers, all well-educated, all professionals, and all very well meaning.  Experts.  And they are filled with Knowledge.  They know what to do.  They might suggest, imply that you don't.  That you can't, because you don't have their Knowledge.  You are 'just the parent'.   They'd take it from here.  Or maybe you feel you can't help.  The Fear and the Doubt have made you feel Powerless.

But I am here to tell you:   You are not 'just the parent'.

You are the Expert on your child!

You are!  You have been there from the beginning.  You know her smiles, his frowns, the things that bring her joy and what brings on his fear, sadness, or withdrawal.  You are keenly aware of her strengths and his challenges.  You are the keeper of her history and the foundation for his future.  You love, and because you love, you mean more to your child than any other professional can possibly mean. You must trust yourself.  Trust your instincts, that inner voice that calls to you. 

Now, you might need to read new books.  You might need to learn new skills, skills other parents don't have to learn.  You might need to parent a little differently.  Or a lot differently.  And the professionals you bring in to learn these new skills are there to serve you.  To foster your relationship.  To support you and your child, together.  The good, the very best professionals will do that. They will listen.  They will work with you.  They will hear what you have to say, and respect your opinion. You will be included. Cherish these people, because they are worth their weight in gold.

And don't let the others ... the ones to presume to know better than you... take away who you really are.

You are not 'just the parent'. 

You are the Expert on your child!

An Open Letter to All Professionals.

My Heart left my chest
In tiny jeans and t-shirt
Walks around, exposed.

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you.  And we are disappointed in ourselves.  We are your harshest critics.  We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Red Flags vs Green Flags

Photo Credit to NakedPastor (really?)

It is IEP season in Special Needs Land. Families across the nation with kids with greater than average needs are putting on their big girl and big boy panties, their hip-wader boots, and diving into the swamp. Some are coming out winners, some are coming out losers, but most dread the hunt.

Attention School District People: When you focus on deficits, that is what you will see.

Attention Special Needs Parents: When the school focuses on deficits, that is how they will view your child.

Recently, I read a lovely piece written by Dr Jim McDonald called Red Flags vs Green Flags. He addresses the issue of autistic "red flags" and how they end up guiding professionals to make autism diagnoses when those diagnoses might be premature or inappropriate. What I found most compelling about his article is his urging of looking at what the child can do... green flags.... and how development works and that the addressing of those green flags is so very important. I was struck by this overarching concept: Look at what the child CAN DO. Build from the positive. Support that, and allow it to become a building place to address deficits.

Anyway, I thought it might be worthwhile to share his article with you.

___________________________________________________


Red Flags-Green Flags: Which do you follow?
By Dr Jim McDonald

Parents frequently tell me about the ‘red flags’ that professionals claim to see in their child.

‘Red flags’ are signs of autistic-like or delayed behavior---such as severe language delay, lining up cars, flicking his hands, isolating himself, not talking to others, repeating actions or communications and many more ‘suspicious’ behaviors.

Seldom do people stop and ask: Does the child show as many positive social behaviors as the ‘red flags’ that appear? The diagnosis of autism, PDD or Asperger’s is often based on these ‘red flags’ without accounting for two critical things; ‘green flags ‘ developmentally correct behavior that is not autistic-like, and recent changes showing productive social and communicative behavior. These ‘green flags” and recent changes show that for some children, autistic behavior is a developmental matter more than a long-term disorder. Some professionals seek out negative signs, focus on the obvious differences and ignore positive ones that I call “green flags.” This results in unreliable and invalid assessment and treatment.

A green flag is a behavior that shows the child is developing in skills that show he is not autistic or delayed all the time. It also suggests that he is even developing out of autistic habits. Common green flags include playing with others, initiating or responding to others’ contacts, playing functionally and not repeatedly, communicating to others more than to himself, showing more interest in people, using language socially, occasionally having reciprocal conversations, cooperating, showing empathy and many other skills that can be built into the effective social life that defines success in autism.

A global ‘green flag’ occurs when the child is showing fewer ‘red flags’ over time or when they are less autistic-like in certain environments. It is now clear that autistic behavior is not everywhere and with everyone. Autistic behavior varies as the child’s environments vary.

WHY ARE RED AND GREEN FLAGS IMPORTANT?

When a child is seen as a list of Red flags, people often attend more to negative behaviors and less to positive ones that a can be built socially. Attending to red flags can result in increasing them.

Focusing on red flags often frightens parents into a state where all they see is negative things. Red flags depress parents and a depressed parent often gives up or gives up opportunities to help the child themselves. They give professionals many tasks that only they as parents can do at home in their daily interactions. Red flags can get parents into a habit of getting rid of behaviors rather than building positive behaviors (Green flags)

Focusing on “green flags” gives parents hope and motivation based on clear evidence. “Green flags” show how the child is developing and where support is immediately needed. They give the parents a place to start to have successes. We find that when parents and professionals respond to the ‘green flags’ they get more of them. Often the most effective beginning goal for a child is to have him do more of their green flags and do them in interactions with people who are matching, balancing and responding to them. Parents will even find that there are ‘red flag” and ‘green flag” people, that is ones who their child does poorly or well with.

Discuss the “green flags’ with your family and others so everyone is supporting your child’s progress rather than focusing on his problems. Use the red flag-green flag approach in your IEP plans with the school. Specify the value of including green flags in the goals so the child has some success to encourage him through the difficult goals.

The One Where I Ramble About Stuff I Don't Know Anything About

Confession: I am now going to talk about something I know very little about.

Homeschooling.

In fact, I can sum up what I know about homeschooling by referring you to the TLC show "19 Kids and Counting" with the famous Duggar family. That's it.

I have always been a huge champion of Public Schooling. I, myself, am a fine product of the public schools. And my family and my husband and his family. I have never been a huge fan of private schools. When I lived in Virginia it always just felt like another way to segregate, because only people with money can go to private schools. Don't have to hang out with the riff-raff poor, and certainly don't have to pass bills to pay for that public school funding. I don't know, it just always bugged me a little. Religious schools were a little different. I could get how a family might want to immerse their child in a religious education. But, again, I have always believed that educating children in an atmosphere accepting of differences and tolerance was a good thing, and again... the whole segregation thing.... well, private school just never was my thing.

And Homeschooling? Well, that was what people who were too paranoid to go to private school did. It seemed really really fringe.

Until recently....

I am a member of multiple special-needs child message boards and websites. And regardless of whether the children have autism, learning disabilities, speech delays, or other significant medical and developmental needs, I have noticed one consistent trend....many of them are homeschooling their children.

I mean, A LOT!

Based on the stories I read, it is largely due to an overwhelming sense of frustration with the school systems, especially related to getting appropriate services for their child. There is this general sense of acknowledgement by these parents that the school either:

A) are not up to the task, or
B) don't care about their child's needs or even understand them, or
C) won't listen to and partner with parents, or
D) all of the above.

So they pull their children out, teach themselves to be teachers, and take on schooling at home. And although I am still a fan of the public school system, and although I believe they can be great, I sorta get these parents.

I guess you can only fight so many fights before you can't fight those fights anymore.

What I wonder is this: Do school districts care that these families have so little faith in them that they choose to do it themselves? Do the administrators worry? Do they reflect at all on what their mission is and how they have lost the faith of these families? Or do they chalk it up to "crazy parents"?

I don't know, but it worries me. There is a lot that is wrong with the educational system, and people WAY smarter than me can discuss it ad nausem. But I want to believe that at its core it is still good. And slowly, my faith is being tested.

On Good Days and Square Pegs

Oh these days are good.

So stinking GOOOD!

J-man is really starting to blossom. He is working so hard to talk, imitating and mimicking sounds and words... or at least trying. Clearly (or not so clearly) his words don't usually sound like words. But oh, the effort! He has even started to try singing... usually to well-known songs, but still! It is a little startling to suddenly hear him trying to sign along, pieces of words in song. I have come to believe that his motor planning is a big issue. He HATES to "perform on command", even when it is words he clearly knows. But ahhh... the sweet sound of half formed words warms my heart.

He also has become more engaged in so many subtle ways. It is hard to describe, but it can be as simple as taking my hand just to hold it, or rubbing noses with me just for fun. These small pieces of him coming out and saying "hi" might seem silly, or unimportant, but for us they are huge.

A few weeks ago I attended a parent advocacy training seminar. It was two days, 8 hours a day, in hard chairs (oiy, my arse!) and covered a large number of general topics in special education law. It was interesting, if a little long, and I feel charged up to help other parents be able to represent their kids. Go Team!

Anyhow, while at this seminar I had a few interactions with mothers there that put me off-kilter. Now, don't get me wrong... they were all very lovely and very supportive. But I found myself on the receiving end of some 'unwanted' advice and some questionable observations that set me back a bit. Largely these 'insights' surrounded my apparent trip down the river of Denial regarding the J-man's diagnosis (or lack thereof) and how denying my boy the label of autism is somehow crippling him.... preventing him from getting the "true help" he really needs. I was counseled to "not be afraid" of the diagnosis and that I needed to rethink our position.

It took me several days to process these interactions. After some thought, I was pissed. I find nothing more galling than having someone judge my child based on nothing but their own biases. These people had never met my son. They certainly didn't understand why we have are doubts about where he fits. I am not entirely sure they understand the subtle differences that we are looking at when we look at him. And yet, somehow I am failing him?

And how am I failing him? Because I am not chelating him, or spending our savings on scads of special supplements, or on the GFCF diet (oh we tried that once... no difference)? Because we aren't in an ABA program? Are those the doors that would open? Because the way I see it, there is no evidence those costly, massively time consuming (and sometimes highly risky) therapies would work for him. For others, yes maybe. But what IS working is what we are doing right now... a highly supportive home and daycare environment, highly specialized speech therapy for apraxia, and us: loving him and responding to him. He is leading the way, and we are following.

.

Is it really that crazy to think something as simple as that is working? That voodoo isn't actually needed?

It is true, embracing "that label" can open doors, and for the kiddos that need those doors open it is a gift and a Godsend. However, "that label" comes with a price. Suddenly, the world views him through that lens. The school decides where "he fits". Administrators draw broad generalizations about what is "appropriate programing" for him. Individual teachers may decide what their expectations should be (or should NOT be) and woe to us to try and change that. So we are well aware that someday we may need to go down that road. Then it may work, it may fit. But right now, really, truly, we-aint-lying, it just doesn't fit. It doesn't work.

And so we are Square Pegs. We don't fit neatly into anyone's category. We don't embrace "alternative" therapies out of hand. I actually read empirical research. The Peer Reviewed kind. We are not interested in pushing a label, defining J-man at age three. And thus, we are cast out of many clubs.... the ultimate rebels. Is there no village for us?

But then, J-man has good days. He has GREAT days. So I will take it, and love it, and accept that sometimes you just have to blaze your own trails.

And nod and smile at unwanted (yet well-meaning) advice.

Inclusion done RIGHT

I want to share a series of blogposts on Mom-NOS that have me capivated. THIS is how you nuture children and evolve inclusion. Inclusion, done right, is magic.

Her posts:

Opportunity, possiblity and community

Circle of Friends

A hair-dryer kid in a toaster-brained world

Meanings, feelings and wacky hair

There are more posts to come on this magical day.... but I want to share these with you NOW. For all of you wondering or fearful if inclusion can work for your child, read these and know it CAN. With the right people, and right attitude, it can make all the difference in the world for ALL of our children.

Just had to share...

One for Team J-Man

I know you have been waiting.

You have been wondering.

What happened?

Did we get what we asked for?

So let me take you back to last week, Meeting Day. Head Honcho leaves with promises to "look into" what they could do and if they could "work out" an exception, and to get back to me as soon as possible. And she did. The next morning I received a call from Head Honcho, and it goes something like this (note liberal use of paraphrasing):


HH: Good morning. I wanted to let you know that I have looked into the issue of getting J-man summer service at his child care....

Me: Yes?? (note hopeful sound in voice)

HH: ... and I consulted with Advocacy Agency and two other school districts and they all said that summer sessions are not required to provide those services, so we will not be making any accomidations in the plan that we can provide. We can offer your son ESY in a special needs classroom.

Dead silence on my end.

The Green-Eyed Monster Momma woke up, stretched and muttered "What the *%$....?!?"

HH: ... I know this isn't what you wanted, but it is what we are willing to provide...

GEMM: So, what you are saying is that you just called Advocacy Agency and they said you don't have to do it? And you aren't going to try to help us ...?

HH: Well, yes... you may call Suzy Advocate and talk to her yourself. Her number is .....

GEMM: Yes, I will call her and get back to you. (note cold tone of rage in voice)

So, GEMM calls Suzy Advocate. After an hour of discussion (or arguing... whatever) with Ms. Advocate, she has basically told us this: Because the Extended School Year Rule does not address Least Restrictive Environments, they don't have to comply.

What?!?!

Basically, the argument is that the rule doesn't talk about it, so they don't have to do it?

To me and GEMM, that is complete BS.

I called the Department of Education and talked to the specialist there. I explained the situation, and my confusion about why they would say that they did not have to comply with IDEA/LRE in the summer. She laughed. I asked her if she could provide me with something that explains it. She said "Well, the reason you can't find anything is because there isn't anything! That is not true, and if I was you I would request a mediation meeting" (fancy talk for a sit down with the Department of Ed and hash it out... not to be confused with a Due Process meeting, which is bigger and scarier).

'Nuff said.

A little research later (and lots of Law reading), we wrote a Letter. Allow me to dazzle you with just the highlights:

J-man qualifies for ESY via the "Self Sufficiency requirement. Specifically, J-man needs to maintain skills regarding his IEP goals for social development and communication as reflected in Minnesota Administrative Rule 3523.0755 Subpart 2 D 6 'development of stable relationships with peers and adults" and 7 "basic communication".

ESY is able to comply with IDEA 2004 requirements for Least Restrictive Environments. J-man's educational setting does continue into the summer. Additionally, Minnesota Rule 3525.2335 governing Early Childhood Program Services, Alternatives and Settings states in Subpart 2 B 3 that "A school district must provide direct and indirect special education services by district special education staff attending a community based program". There is no stated waiver or exception for ESY services noted in this or any other rules. Additionally, nowhere in the ESY Rule is there any reference that suggests they are exempt from complying with the requirements of IDEA 2004 for a Free Appropriate Public Education. Indeed, the Minnesota ESY rule apparently only addresses criteria for these services, not the services themselves, and therefore should still need to comply with IDEA. Additionally, IDEA states when implementing ESY services the public agency may not "unilaterally limit the type, amount, or duration of those services".

Yeah. Bite me.

It was sent, and we waited. And waited.

And today... SUCCESS! Apparently, they have found a way to "work it out" for us.

Yep, I thought they might.

Most excellent.

On Meetings and Other Battles

So apparently I am going to become "that parent".

Let me start with the story, and then move on to the rant. It'll be a little more coherent that way.

A few weeks ago we met the J-man's new teacher and speech therapist from the school district. Over the next few weeks we are going to lose Ms Kristin (much to our deep sadness), and Ms Becky and Ms Jane will be working with him at his preschool. Of course, Ms Kristen has set the bar shockingly high, but I am going to remain hopeful that his new teachers will be as excellent.

During this initial meet-&-greet with the new folks, the subject of J-man's ESY (Extended School Year) eligibility came up. Essentially, ESY is summer school in 'special ed' language. And yes, the J-man qualifies. Apparently, however, they do not provide the community based services in the summer like he is getting now. The only way he can get any coverage of either speech or teaching is if we enroll him in their multi categorical classrooms.

Now, we have already addressed the issue of the multicat classrooms. We toured, we considered, and we rejected the idea. The reason he is enrolled at his current preschool is because we believe, strongly, that typical-developing peers are a tremendous benefit to our boy. He has been hugely successful in this environment, and the idea of putting him in an environment that is exclusively with other special needs kids (many of whom have significant behavioral and language issues) does not jive with our goals for him.

Now, the rant.

See, this all goes back to the idea of Least Restrictive Environments and Inclusion. In a nutshell, inclusion is the ideal in which all children learn together, regardless of disability or ability. According to Wrightslaw, the Individuals with Disabilities and Education Act states that the Least Restrictive Environment policy says that school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers to the maximum extent possible.

Dan Habib eloquently deal with the issue of inclusion for his documentary Including Samuel.



I highly recommend this documentary (check out your local PBS station for viewings!)

Now, the issue of inclusion is a thorny one. I know this. Inclusion is difficult to start, requires lots of teacher training, good classroom supports, and a commitment from all involved to make it work. It isn't always easy. Another documentary series, Educating Peter (and later, Graduating Peter), highlights both the challenges and rewards of inclusion (another series I highly recommend).

I believe that whether or not inclusion is appropriate for a child is truly on a case-by-case basis. However, I also believe that.... done well... inclusion should absolutely be the goal for the vast majority of children. And for the J-man... well, this is a no-brainer. His current achievements in preschool, with appropriate support, is crystal clear. Hands down, inclusion is the only way to go. He needs typically developing peers. They help him learn. It is essential.

So now, we get to have a meeting with All-Powerful School District people to argue about getting him some summer service at Jack and Jill. Have I mentioned that we PAY for him to be in preschool... a lot of money...? And we are only talking about 3-5 one hour sessions over the summer to address issues and help him maintain skills?

Yeah.

So I get to be "that parent", and see if I can convince them that his least restrictive environment IS preschool, and they do have an obligation to continue his current programming. Wish me luck, because GEMM might have to peek out on this one.

Optimism & Hope

Some people might say daycare is a bad thing.

I say daycare has been Jonathan's lifesaver.

He loves it. LOVES it. He has evolved from this anxious, unsure child to this confident, excited, social boy. He walks in, goes to his locker and willingly takes off his coat and hat. Puts them away, by himself. Walks with me, hand in hand, to his room and knocks ever-so-gently on the door. We go in and he turns to me, gives me a hug and a kiss, and pushes me out while closing the door in my face. Yeah, mom... don't let the door hit you on the butt on the way out.

He joins in classroom activities willingly and joyfully. The other children in the room apparently love him. I am told that there are a few children who are particularly interested in him, will pull him to activities and try and engage him. The amount of things he has learned is utterly amazing. I believe that... for the J-man... being with peers who engage him, whom he can model after, learn from, and enjoy has made a huge difference.

His mouth is moving. And moving and moving. He is starting to imitate sounds...sounds I and hubby make, others make, even things on the TV. He is trying words. Mostly, he gets the first sound in the word, but he is making so many more attempts. It is encouraging. He still doesn't always try to use sounds or words to communicate his wants, needs or thoughts, but the fact we are hearing more noise out of him... aaaahhhhh, heaven.

I am not sure, but we might have had the best IEP meeting ever last month. Definitely, the bar was set very high for every subsequent meeting we have. We made the decision to continue to get the special education services at Jack & Jill Child Care instead of moving him into the district classroom, and it is the best decision we have made so far. The center had TWO staff in attendance at the meeting and they were completely willing to work with Jonathan on his goals. The district folks were wonderful, and we came up with a plan that I think truly addresses what needs to be the focus for Jonathan right now. I am just thrilled with the way things are going...

To add to it all, we are starting new speech therapy next week. We decided to go back to Associated Speech with Janet Jacobs, and they were willing to take us on. She is advocating a different approach with the J-man, and while I am not sure what that will look like, I am optimistic about what we might gain.

Next week will be a tremendous week for the J-man. In addition to starting his new speech therapy, he is also moving into the preschool room at Jack & Jill. With the big kids! I am nervous but extremely optimistic. I think he will love it. And I think that we will start to see even bigger and better things down the road.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence. -- Helen Keller

GEMM, Kicking @ss and Taking Names

When GEMM rears her head, it is rarely a welcome thing.

However, sometimes her fire is just what is needed.

As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!

I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.

"Couldn't he miss daycare one of those days?"

"Errr.....no"

"Well, I guess we just have to put you on the waiting list for a cancellation."

Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.

Emails flew. Voice mails were left. And management would not budge on the policy.

Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.

So we quit.

What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.

With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.

On Being Brave

Recently I was Therapy Dog shopping online.

Actually, not shopping. It isn’t like you can get on Ebay and get a therapy dog. I was actually just looking at therapy dog programs specifically for children with developmental delays. I had gone to a parent support group last week and several parents had therapy dogs for their children. One parent talked about how the dog helped with calming during tantrums, the other with communication issues and safety. It was an interesting discussion because I had been thinking for several weeks that a dog might be good for Jonathan. I hadn’t thought as far as a specially trained therapy dog, but nonetheless something appeals to me about the idea of a dog companion for our family.

So, as I am cruising the Internet, I find this video:




I was speechless and in tears. So much about this boy… his face, his smiles, history…reminds me of Jonathan. Not everything, mind you. I would guess that this boy’s need for a therapy dog is greater than the J-man's. Jonathan does not have the same issues. But this video and its song spoke to me.
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"... the way it always was... just isn't good enough... you make me want to be Brave..." (what a wonderful song)

Being brave means doing what you need to do to help your child. Being brave means living with grief. Being brave means having every kind of hope. Being brave means being more than you thought you could be. Being brave also means loving and laughing in spite of... or maybe even because of... the frustrations you experience. I am meeting such wonderful, brave people on this journey of ours.

So, will we get a Therapy Dog? What do YOU think we should do? Most of the Therapy Dogs are quite expensive (think thousands of dollars)... and our needs right now are small. There is a local place that does some companion dogs that I am looking into. But allow me to encourage YOU to look into these organizations and consider donating a little tax-deductible coin toward the efforts. When you read some of these stories .... oiy, my heart!!

For Whit: http://www.4pawsforwhit.com/

http://www.4pawsforability.org/dream.html

http://www.autismservicedogsofamerica.com/

http://www.puppyloveinc.org/ (Our local place)

When ECFE Breaks My Heart, Part 2

(for Part 1, click here)

So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:

Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!

Sigh.

I have heard comments like this before:

God picks only special parents to take care of these little angels...

I could never do what you do.... you have been chosen to a higher purpose.

God only gives people what they can handle, and you are meant to be his mommy.

These special little angels are sent here to teach us something.

Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.

Don't say crap like this. EVER AGAIN.

Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.

But this is what I hear:

Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.

Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.

I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.

Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.

Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.

When ECFE Breaks My Heart, Part 1

Last week, I cried at ECFE.

In my defense, I had a long night at work the night before, was having some issues with back spasms the last few weeks and had taken a muscle relaxant (Evil Flexeril) the night before and thus had a very bad Flexeril hangover. (BTW, I hate Flexeril) In addition, the week had been long and somewhat stressful. We received Jonathan's re-evaluation from the school district, and while I am not going to go into the details today, needless to say there were many 'numbers' that made me sad. Not that he is doing poorly... actually, he is doing great! But to see how delayed he is in black and white...hard to feel good about it.

Ok, so I have had my issues with ECFE. But generally, it has been going well. However, when I walked into the parent classroom and saw the words "Language Development" written on the blackboard, I knew it was going be a quiet day for me. Since I was already feeling like ka-ka, "being quiet" wasn't going to be far from the mark anyway.

My resolve: Just keep my mouth shut. Do my best to fade into the woodwork. Find my happy place.

Yeah, right.

So, the question posed: what are your kids doing, saying, etc?

And let the brag-fest begin!

It seems petty to be jealous and upset about these things. But GEMM doesn't care. Her giant fiery head rears itself at time like these, and the throat closes, stomach acid churns, and I become an expert on the lines of my hands. Goooo to your happpyyy place..... happppy plaacee...

And then, the teacher turned to me and another 'special needs' parent and made a point of asking us what our little ones were doing. It is well known we are the 'special needs' parents, and J-man's issues are known. I was prepared. I had my script. I rattled off where we were, while aching inside because I knew... as it came out of my mouth... that it sounded bad. Real bad. But it is a script I am used to delivering and questions I had heard before. I could make it!

And then one mom asked me "And how are YOU doing with all this?"

Let the waterworks begin.

I just opened up my mouth and nothing came out. I truly didn't know what to say. No one asks me that. Not really. I just wasn't prepared. I honestly am not even sure what I said, I just teared up and mumbled something and who knows... I probably babbled. With my face in a tissue.

It just snuck up on me.

It is funny. Just when I feel like I have got it together, am working toward some level of acceptance... I find out it is just a lie I tell myself.

The Pursuit of Perfection

We had Thanksgiving at our house this year, which consisted my parents, brother, sister in law and nephew. Six adults, two kids under the age of five. A simple and (mostly) quiet holiday.

The task fell on me to prepare The Turkey. Now, for those of you who have prepared The Turkey for Thanksgiving dinner, you know this is no small task. I mean, sure, it should be simple… put turkey in oven and roast it. Ta-Da! But no, there are a myriad of pitfalls in the preparation of a turkey. First, you must thaw it, a process that takes place over a 3 day period. There is no thing as a "last minute turkey thawing”. Then there are a dozen questions to answer.... to brine or not to brine? How long to cook for maximum juicy-ness and least likelihood of salmonella poisoning? Method of cooking... grill, roast, deep fat fry? Stuffing in or stuffing out? Seasonings? The turkey is the centerpiece. The "make it or break it" part of the meal.

Juicy Turkey = Thanksgiving Perfection.

Dry or Undercooked Turkey = Complete Failure.

Can you feel the drama?

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After dinner, my mom and I were chatting. She confessed that this time of year is not her favorite... that there is too much pressure to do everything "just so".... sorta sucks the joy out of the season. And that got me thinking about the pursuit of perfection.

I think (and mayhap you agree) that many people dread the holiday season because of this pursuit of perfection. The holidays are suppose to be happy! With singing and good food, smiles and perfect presents, joyful church activities and holiday decorations. And family and friends in perfect harmony. And if you don't have those Norman Rockwell moments, something is seriously wrong with you.

The "perfect holiday" is a like a condensed example of our pursuit of the perfect life.

And to not have a "perfect holiday" is some sort of failure....

Much like not having the 'perfect life'.

Jonathan is teaching me that there is no such thing as that 'perfect life'. Not that I didn't know this before Jonathan. But the pursuit of perfection ... the possibility of having the perfect house, job, and family is still there somewhere. The illusion still beckons from the shadows. But that definition of perfection has faded in importance for me. I am trying not to care about those things anymore.

My goals are smaller now, but so much more important. My desires are simpler, and yet so much more complicated. I feel like a square peg trying to fit in a round hole, not quite knowing my place in the world where the pursuit of "perfection" seems so important. I don't fit... we don't fit... and I am not sure what that means. Or how to be apart and yet a part.

But how about that Turkey?

Thawed.

Brined.

Seasoned.

Roasted with onions in an oven bag

at 325 F for 3 1/2 hours.

Perfect.

Goals

How many two year olds do you know who have goals?

Next month, we have Jonathan's IEP meeting. An IEP (Individualized Education Plan) is essentially a road map or 'contract' for establishing educational goals and tracking those goals. The IEP not only establishes these goals (and some kind of metric to measure those goals) but also helps establish the ways in which these goals will be met. Generally speaking, the goals are built by information on the the educational assessments previously done, and on both parental and teacher feedback on where the child is and where they need to go. The IEP is like the Bible for special education students. It guides all.

Crafting a good, quality IEP is not an easy task. It requires an understanding of the child's strengths and challenges, how they learn best, how to capitalize on those strengths and minimize the impact of the challenges on overall performance, and how to address the areas of weakness in a way that is most effective.

Parents come to the table with the Child Knowledge. We know our kids. Alas, we don't always know the best way to address the issues and implement them in the classroom. We don't always know the words to describe the subtle problems and issues, and frankly... if we could fix our 'broken' children, we would.

In a perfect world, teachers and therapists have the education and skills. They are suppose to know what to do and how to do it. And we parents look to them to help craft the perfect IEP... the IEP that will provide everything the child needs to progress... no, EXCEL!!

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Do I set expectations too high, perchance???

So with Jonathan's IEP coming up, I have started thinking about what kind of goals we should be establishing for him this next year. I have been brain storming a list of "good goals" for his IEP.... and I found that this was not an easy task! It is so hard to articulate what his goals should be in a meaningful way. It is so much easier to just say what I want....

I want him to say "Hi mommy!" when I walk in the room.

I want him to share with me his interests and show me things he likes, not just get me to do things that he needs or wants.

I want him to play with me, not just by me.

I want him to have friends. Real friends that he likes to see and wants to play with.

I want him to try and tickle me. And chase me. And chase and tickle me.

I want him to be able to use his imagination and play creatively.

I want words.

Lots and lots of words.

Am I asking for too much?

Less Traveled Roads

I shall be telling this with a sigh

Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

--Robert Frost

There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.

For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and mostly share the same experience.

For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.

Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.

I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.

What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).

We have been so fortunate. Jonathan has a brilliant team and we have had very few struggles thus far. While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.

My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.

1 in 100?

Recently I posted the following video clip on Facebook.


Watch CBS News Videos Online

A dear friend of mine, a grad school buddy, suggested that this study mentioned was seriously flawed (indeed that is true) and that the reason we see these increased rates is because of "a broader diagnostic criteria & greater public awareness". He is certainly not the only one to feel this way... that the rates of autism are some kind of statistical anomaly and not truly reflective of "pure autism". And indeed, while these reasons may be a factor in the rate change and prevalence of autism, I would suggest that those reasons are wholly unsatisfying to both why the rate changes are being seen and what these rate changes actually mean.

Of course, there are two possible lines of reasoning for the changes in the rates of autism.

Reason One: the reason no one wants to be true is that there is a real, honest-to-goodness reason why we are seeing more autism. The possibility that... for some unknown, scary reason... children are having some major neurological event either prenatally or in the very early developmental years that results in the unique autism symptomology. The theories range from the the plausible (prenatal exposure to some kind of teratogen, possible autoimmune issues coupled with environmental or viral insult, mitochondrial issues), to the unique (folic acid overload, Vitamin D deficiency) to the crazy-ass (just Google for the nutcases).

People with no children or typical children are scared to death of Reason One... because lets face it.... if it is Reason One, it could happen to your children. It is nicer to think that it is all genetic, and you are safe, and the rate increase is all about Reason Two.

Reason Two: The new rates of autism are a statistical anomaly, the result of over diagnosis or misdiagnosis, or both (whew, thank god.... it isn't real.... anyhoo.... ).

Ok, let's make the assumption that the true occurrence of autism in the world has stayed stable for the last 1000 years (in essence, there is no other reason for more autism). Given that assumption, what are the reasons for the current changes in overall rates in autism diagnosis? The possibilies, as far as I can tell, fall into the following categories:

1) Autism has been historically under-diagnosed. Basically, this assumption suggests that the current rates are more accurate, and that the previous rates (of 1 in 150 kids) suggest a lack of overall diagnostic ability by professionals in the field and that the broader inclusion of mild to moderate cases actually does reflect the same neurological conditions that lead to these specific disorders. Thus, this suggests 50 years ago we either had:

A) A lot of mild to moderate autistic children running around not getting services, and ending up labeled learning disabled, emotionally disturbed, or ultimately becoming diagnosed autistic due worsening symptoms, or

B) The mild to moderate ones "grew out of it" (which experts say can't happen, but whatever)

2.) Autism is being grossly over-diagnosed. Basically, this assumption suggests that there has been a complete frenzy to diagnose kids with autism, even though they might not meet strict criteria. Diagnosticians are misdiagnosing kids because they either are poorly trained in recognizing 'true autism' or are motivated to "get kids services" and the easiest way is to give an autism label. Therefore, the "new autism rates" are a reflection of a misapplication of the diagnostic criteria and a "problematic" and gross broadening of the criteria.

Of course, this assumption then suggests that the kids that are being NOW diagnosed as "mild to moderate autism" are, in fact, either:

A) Just fine... nothing is wrong with them that a swift kick in the ass won't cure;

B) Suffering from some other condition that causes significant language delays, social delays, and/or sensory issues (see my review of Autistic-Like Graham's Story) and apparently we have no words for and no historic precedent for, or;

C) There are always weird kids... that is all they are and were 50 years ago.

3.) Early identification is the reason we see a rise in Autism rates. So, in the last 10-15 years, a lot of education has gone toward getting doctors and educators 'up to speed' on autism spectrum disorders and working toward an early intervention model that allows these kiddos to get services early and improve outcomes. Ok so, more awareness, more reporting, increased rates. Makes sense.

Except, and here is the part I cannot get my head around... then what happened 50 years ago? So, 50 years ago, a kid was not identified as autistic early... in fact, nothing was noticed until school age. Well, there was 1 of 3 possible scenarios:

1) Kid was not truly autistic, or "grew out of " the symptoms by the time he/she reached school age.... enough so the teacher just thought the kid was weird, but not disabled. Probably didn't do awesome in school either. Experts say that can't happen... neurology is neurology... but whatever.

2) Kid was truly autistic and was stimming like a mad-fiend when he entered kindergarten. Which, if this ended up happening the rates would go UP, right.... just the reporting TIME would change, not occurrence.

3) Once the kid entered school and still had some difficulties and behaviors, he was dealt with as LD or emotionally disturbed.


So, does that mean that we are just re-labeling the problem with new words? If the rates have truly remained the same for the last ... oh, say....1000 years, what accounts for these new kids? Are they faking? Misdiagnosed? Brats? Had they been diagnosed as something else 50 years ago? Or not at all?

That is what makes me most curious. IF the rates are really statistical anomalies, then what would we have called these other "new" kids?

Or, is it possible that these mild to moderate cases are really something NEW? That 50 years ago we didn't see these kids because they weren't there... that something more has happened than just some re-labeling shuffle.

I really don't have any answers, but I can say this. In my humble experience, parents of a child who is given an autism diagnosis rarely sit back and just accept it. Generally, every parent I know looks for second, third, and fourth opinions. Indeed, I would guess that the increased awareness even fuels THAT... going out and finding better doctors, more complete evaluations. And even if there is funny business going on (and I am sure there is)... there is a reason for it. No one I know WANTS their child to have a disability. What they want... what they need... is help for their lost child.

So, what is My Big Opinion?

Call it Autism. Call it Apraxia. Call it Sensory Processing Disorder. Hell, call it the Snowman Syndrome for all I care. But recognize that all of this really does mean something for that 1 in 100 family, regardless of what you call it. Regardless of whether these children are being correctly diagnosed, mislabeled, or are the mark of some new, scary epidemic, we cannot and must not poo-poo these rates. These rates DO mean something. They mean that for one family in one hundred, life will never be the same and they will face struggles that other families will not. It means that their child... whatever the reason... is struggling with something that impacts their ability to learn, ability to form relationships, and ability to interact with their world. For all of our fine categories and fancy diagnosic labels, let's not forget to keep our eye what is really important.

Alphabet Soup

Confession: I am an NPR junkie.

I am not sure when I went from cool hipster listening to the newest, coolest, obscure alt rock bands to cruising around in my Saturn VUE (the ultimate "non-SUV" soccer-mom-mobile) listening to such riveting programs such as The Splendid Table, Speaking of Faith, Car Talk, Marketplace Money, BBC Worldnews, This American Life, and so on. But so it is... I am a NPR junkie/intellectual elitist. What can I say?

Anyhoo. I was listening to NPR the other day and they were doing a program on OCD (obessive compulsive disorder). Now, I fell into this show at the tail end, and so I missed a large percentage of this discussion. And, to be honest, I was only half listening to the rest as I was driving J-man to yet another appointment. Nevertheless, my interest was peaked when a listener called in and asked the Expert Psychologist about her son who has autism. She stated that she had been trying for many years to get the doctors to add an OCD diagnosis as well, but was meeting resistance and wondered if the Expert Psychologist could comment. Now, of course, because I was only half listening I missed the first part of her answer... but my ears tuned into this part (which I am completely paraphrasing. Never have I wished for Radio DVR more. Expert Psychologist, please forgive my swiss-cheese memory, but I hope I recalled the spirit of your statement):

"... parents end up with a child who has what I like to call Alphabet Soup: PDD, OCD, ADHD, LD... all in the same child. But instead of looking at these as four different diagnoses or disorders, we should instead focus on this as one nervous system that functions in a particular way. And the individual problems in each diagnosis are actually a part of a whole neurological picture... where each set of behaviors no doubt influences other elements of functioning."

One brain. One nervous system. Not 4 or 5 different disorders. One brain that functions in a specific way, in a way that creates specific set of 'problems'. And those problems are not always neat and tidy in the way we "label" them. So, in order to attempt to capture the essence of this nervous system, doctors and educators rely on this Alphabet Soup approach. Of course, Alphabet Soup doesn't work. It doesn't work because these nervous systems are actually people, each which is unique and individual in its presentation of the particular challenges. But instead of crafting a carefully articulated story of specific challenges that one child may have, we get diagnostic codes and shortcuts and assumptions.

Which is why children have parents. And why we, as parents, must force ourselves to become absolute experts on our child. I cannot abdicate my role as the J-man's voice. We are coming up on his Big Evaluation and IEP planning for when he turns three, and I need to gear up and get ready.

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I have been told that the Big Evaluation is merely to qualify him for services. Essentially, the school district needs to know that he is delayed, and delayed enough to qualify for service. They will ask us questions about his development. They will test him on standardized tests measuring speech, language, sensory issues, and cognitive development (which I have a HUGE problem with, but that is for another post). They will add up numbers and 'quantify' the J-man. And they will, no doubt whatsoever, qualify him for the special education.

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Our school district has a designated evaluation team that does all the evals for special education. The reasoning behind having a designated team is a good one... you have experts in evaluation, who know how to administer the tests, and who do so in a somewhat systematic way. That way, all children who are tested are tested with essentially the same people, the same way. The hope is that by doing it this way, the results can be seen as reliable and valid. That his scores compare to other kids who have the same experience.

.

Except...

.

... what does that actually tell us? That... when dealing with complete strangers in an artificial setting, the J-man can or can't do X, Y, and Z? That... with no supports whatsoever, my language delayed, crappy auditory processing, socially delayed and possibly autistic TWO AND A HALF YEAR OLD can or can't do X, Y, and Z?

.

I guess if the goal is to to see if he will qualify for service, this format is a goldmine. However, if you actually want to see what he CAN do, and do well, this is not the way to do it. How will they really be able to know who he is and what he really needs? Can this team of complete strangers assess the root of his processing difficulties, his motor planning issues, and social needs, and come up with a valuable plan that addresses those issues in a meaningful way? Shouldn't THAT be the point of the Big Evaluation?

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So, I shall be putting on my game face and going in...