Friday, April 15, 2011 

Dear Dr. Blahdy Blah

(This is the way I wish I could write it. I will edit out the snark and keep it grown up and professional when I send it. I may hurt myself in the process.)

Effective immediately, we are moving our children to another pediatric practice. Since you were unwilling to hear what I had to say during the last five years, I decided to put into writing the reasons why. I hope that you take the valuable advice I am about to give you and pull your head out of your ass.

At Youngling's 18 month well check, I voiced concerns about his development. My biggest concern was his never ending tantruming. You brushed me off as a neurotic mother, telling me to put him in time out. I asked you if you had children, because putting an 18 month old into a time-out is akin to drinking water out of a sieve. You admitted you did not, but that is what you would do if you were a parent. Wow, thanks.

At his 3 year check-up I mentioned I had concerns about his development again. He had lost some words, and the tantrums were even worse. You told me he was hitting all the developmental milestones in the books, that I wasn't structured enough in my home, and that there was nothing wrong. I told you as a seasoned mother of three (one of those three already diagnosed with SPD) that he wasn't. But you stayed up all those extra nights in college so you were right and I was wrong.

At his 4 year checkup I mentioned that I had concerns about his development and now so did his teacher. I had already heard from you how I sucked as a parent, and now his teacher was telling me, too. Both of you were so helpful giving me books about discipline! Gosh, maybe if I read all those books for the tenth time, the information would sink in the way it hadn't the previous nine. Words couldn't begin to express how thankful I was for all your help! By the way, in case we aren't clear Dr. Blahdy Blah, this is called sarcasm. At this visit I brought up a very difficult word for any parent to think, let alone say aloud. This word starts with an A and has a very famous logo that looks like puzzle pieces. You again treated me like a neurotic mother (thank you so much for that, it did wonders for my self-confidence) and sent me on my way.

Finally, at an emergency 4 1/2 year well check you gave me the referral to the specialist I had been asking for. You only did this because the school district had evaluated him and found SEVERE developmental delays. You know, the delays I had been asking about for the last three years. Since these people were professionals with fancy degrees and titles, you listened.

When I went back to the regular 5 year well-check with a diagnosis firmly in place for anxiety disorder and SPD, I waited patiently for an apology. An apology which you failed to give. In your mind, you followed the textbooks and the guidelines and you did nothing wrong.

I am here to tell you that you did do something wrong.

You undermined the confidence of a concerned parent. You delayed getting an amazing boy the services he needed. You delayed getting a family the support they desperately needed and deserved. You? Were epic fail.

Now, here we are almost five years later and I am finally hearing experts say what I suspected all along. He is autistic. I finally have validation. After 5 years I can believe I'm not a bad parent, and I don't let my children climb the walls like monkeys and slop out of troughs like pigs. I felt that way because of you. What happened to "first do no harm"?

Respectfully, Dr. Blahdy Blah, what would have been the harm in the referral? Worst case scenario, I would have paid a few extra bucks out of my pocket to hear I was wrong. Youngling would have had a few extra performance tests. So what? I, as a parent and patient, was willing to do that for my child.

I may not have a degree in child development (ironically, I am working on that now) but I do have a degree in parenting. I minor in compassion. You are lacking in these two key components. Might I suggest that in the future you take a moment to recognize that it is painful for a parent to admit to themselves that something is wrong with their child? Might I also suggest that you take a moment to listen? Even if a child is hitting the milestones in a book, there could still be something wrong. Listen.

So, Dr. Blahdy Blah, I want you to know I have lost my confidence in you as a health care provider. I will be taking my children to another practice that treats the whole child, not just the boo-boos you can put Band-Aids on. In the future, please realize there are other hurts, and those hurts run much, much deeper.


Also, pull your head out of your ass. (Yes, I said it at the beginning, but I was verbose and you may have ADHD. You never know.)

Sincerely,
Kirdy Chaos

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The journey continues....

Youngling is autistic.

Do we have a formal diagnosis yet? Well, yes and no. We go back to the specialist in May. Reading his evaluation from the specialist I see phrases and hints of things I wasn't ready to hear a year ago. "Pervasive developmental problems" is one. Hello?! PDD-NOS anyone? I went to college, got a degree in English, and I completely missed that? Obviously, in the area of reading comprehension we can safely assume I was stamped with a big, fat "FAIL" in red ink.

I mean, I've suspected it for that year. The kid is massively, consumingly obsessed with Legos. And Star Wars. And Lego Star Wars. He lines things up in rows. He repeats silly noises that he hears. Has no volume control. Is obsessed with Legos. No. Really, really REALLY obsessed. And can have like an hour long conversation about them.

At his IEP review last night the district psychologist told me she suspected he had Asperger's a year ago, but I clearly was not ready to hear it. Slap some ginormous feather on my ass and call me an ostrich. (No, seriously, please do....it might hide some cellulite.) But here we are a year later, my head is out of the sand and I am able to type those first 3 words without having a box of Kleenex at the ready.

It's a beginning. The first solid step I've taken into our future. Thankfully, it wasn't on a Lego.

Wednesday, April 14, 2010 

Ghosts

Contacts though fleeting
Mold me, shape me, pain for me
Releasing the scars

Saturday, April 03, 2010 

Where to begin?

So once again I've treated this blog like a redheaded stepchild, or worse yet, much like my relationship with faith and God, only there when I need it. So....

Looking back it's been almost 2 years since my last post. Things are a bit different. Cman has blossomed and is doing amazingly well. He is very close to testing out of speech therapy, and we will have an IEP review in 2 weeks. He is a straight A student and was elected to Student Council this year. He is obsessed with all things Harry Potter and video game related. He no longer needs his leg braces, and we still go for the yearly neuro visits, which are brief, quick and to the point....kid is fine, see you next year.

LMD is in 1st grade. She is reading, writing, drawing and SOCIALIZING! Girl wears me out with all her playdates and such. She is a good friend with a heart as big as an Arizona summer sky. I call her my sunshine....she brings love and joy with her everywhere.

Which brings us to Youngling, and the reason for my post today. We are rapidly realizing he's....different. Now don't get me wrong, I adore his quiet solemn observations of the weather...."Mother is angry today. Her wind is blowing and biting." I mean, what 4 year old says that kind of stuff? Mine. In my heart that makes him pretty freaking cool. But yet.....

There are the other days. The days when his 4k teacher tells me that he melted down for a full 2 hours and disrupted the entire class. The days when he hits, or pushes, or calls kids names. Or even the days when the phone is noticeably silent, as he begs for playdates like his older brother and sister have. He's 4, I tell myself. Those days will come, I tell myself. He's an active, rambunctious 4 year old boy with lots of extra energy, I tell myself.

And still that's not the whole story. I haven't yet mentioned the nights I cry myself to sleep, wondering if I am the right mother for him. Could I be failing him? He's such a sweet, loving boy who tries his best, yet most days seems to just fall short through no fault of his own. He tries. At times I can see his body quiver from the struggle to comply, to follow, to "be good". Somehow, he just can't.

So, here we are again two years later, more testing, more screening, new IEP to come. I am relieved to know that professionals see what I see....that he's good, that we are doing our best, and that we all need help. I no longer look at myself in the mirror and see condemnation and scorn looking back at me. I see a resilient mother who is trying her best, who loves with her whole being. I see one tough biotch who is finding her stride. And finally, I believe that mom is going to be ok.

Best of all, since she will be ok, so will Youngling. I believe this. I have to have hope.

Friday, July 18, 2008 

My Friday Anthem!



Youngling woke up dry today!!!! NO MORE DIAPERS! C'mon people, sing it with me! Hold those lighters up high! (yeah, dating myself, but do it anyway.)

Time to give Youngling a new nickname. He's a big boy now!

Thursday, July 17, 2008 

When life gives you lemons....

Remember the post a few months ago talking about Cman's new diagnoses? (Is -es the plural for diagnosis, or is it diagnosises?)

We have a new one.

On top of all the other things mentioned in that post, Cman has now been ordered to wear orthotics to prevent him from toe-walking. While his heel cords are still flexible right now, they could tighten down the road and need surgery, so he needs braces to break him of the habit.

Yippee.

The whole hour ride home from the specialist, I kept thinking, "Damn. Why him *again*? When is he going to catch a break? Why must he always be different? Why is life so unfair to him?" (yeah, peevish. Totally. Now shut up.)

In the midst of my pity party, Cman pipes up from the backseat.

Cman: Mom?
Me: Yeah, bud.
Cman: Will these braces really make me run faster like the doctor was saying?
Me: Yeppers, dude.
Cman: Sweeeeeeeeeeeeeet.

Cman picked out braces with flames on them the following day so he can run "smokin' fast".

I sure do learn a lot from that kid.

P.S. As for the bad news a few months back, it seems his cholesteatoma may be recurring. He has a follow-up in early August. I'll keep you posted.

Thursday, June 12, 2008 

Some Guys Have All the Luck

Thursday, May 08, 2008 

I got bad news today....

and I'll post about it later. In the meantime, this will help cheer me up.