Monday, October 17, 2011

Sorry, doctor. You're wrong.

I was doing some shopping at my local vitamin and supplement store when a lady looking at children’s vitamins noticed me quickly placing some products in my basket. She watched me for a minute and then asked if I could recommend some vitamins for her son. I looked over and saw a young boy sprawled out flat on his belly quietly playing with a car a couple feet away from his mom. I asked the mom some specific questions to try to learn about her situation so that maybe I could provide some guidance.

I learned that her 4-year old son was not eating. The mom was grasping at straws to get some sort of nutrition into his body. When he chose to eat, his diet was extremely limited – full of wheat and dairy. Sound familiar? He was also not communicating verbally with much success. The alarm bells were very loud in my head as she shared more with me. While she was talking, I glanced at him occasionally and watched him play with his car on the floor. He was passively listening, only trying to speak or use crude sign language when prompted by his mom. He wouldn’t communicate directly with me, instead using his mom as a translator for his very special hybridized language of Spanish, sign, and English.  
I began to share a bit about my boys and their journey since we learned about autism and their food allergies. The lights seemed to be turning on in her head. She knew there was something going on with her son. It was very obvious to me also, and I had just met him.

This mom had done everything right. She was seeking high-quality supplements to try to help her son avoid vitamin deficiencies from his lack of food intake. She told me his hearing was fine, but he wasn’t picking up speech as he should at the age of 4. Even his own father has great difficulty understanding him.
She told me that she had taken her son to the doctor to discuss her concerns about his lack of speech development and his daily refusals to eat. The doctor told her to not worry about the food thing and that he would talk eventually. His advice was to just give it some more time.  

OMFG! In my head I am going freaking nuts when I hear her say those words. I’m concocting an imaginary plan to go visit this excuse for a doctor and scream obscenities at him.
Give him some more time? He’s four! Obviously something is wrong. Hellloooo! So, the mom should just wait until he enters kindergarten and the teacher has a heart attack when she realizes how delayed this child is? That would be a huge disservice to the child, his family, and his future teachers.

I felt awful for this mom. I was her not that long ago. I had blind faith in our doctors. I heard those same words when I brought my son's delays to his attention. Oh, just give him some time. Boys are slower to develop speech. It will be okay. 

Don't forget...doctors are always right! Especially about cigarettes!

NO! No, it’s not okay! He doesn’t need more time! He needs help! NOW! The wait and see attitude infuriates me to no end. And, now that I have the clarity of 20/20 hindsight, I can almost taste my fury when I hear those same words again.    
Unfortunately, I listened to our doctor longer than I should have and I lost precious time that I will never get back. I finally figured out that I was getting nowhere fast and that I needed to take control of our situation. And I did. And my boys are better for it. I shudder to think where we would be if I had continued to wait per the doctor’s recommendation. It makes me cringe just thinking about it.

I spoke with the mom about food allergies. I also told her about free developmental assessments available in her school district. She was floored that such a service exists. I didn’t specifically tell her to pursue an autism diagnosis for her son, but I mentioned how my boys did many similar things at the same age. And, I used the word autism a lot. I feel very confident that this mom will call the school district to get an assessment for her son. I’m about 99.9% sure that they will find areas of delay and that he will qualify for developmental preschool. I have no doubt. A proper diagnosis will hopefully come in time, but the first priority is getting this kid assessed and qualified for a specialized education.

I gave her my card and asked her to keep in touch with me. I am very interested to see the outcome for this precious boy. I can only hope and pray that he gets the help he needs and deserves. Lord knows his doctor didn’t help him one bit with his ignorant remark. Jerk. Thank God this mom followed her instinct. 
Despite my hurry that day, I am so glad that I chose to take those few minutes to talk with that mom. I can only hope that a seed was planted and that positive changes are on the horizon for her son.  
Moms, you have a wonderful gift of intuition. You know your child. Don’t accept the garbage you are fed if there is any shred of doubt in your heart. Do what you do best and seek the answers for your child. You, like all of us mother warriors, are smarter than your doctor when it comes to your child. Trust yourself.

I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too?


Lizbeth said...

Hook, line and sinker baby. I was cringing as I read that as it sounded like the same song and dance I was given. I got fed up with it and researched things on-line and told my MD what my son had--Asperger's. And then I changed physicians.

li'l Muppet-lhead said...

I got it too, from 2 different MD's in 2 different States. It took a nurse at WIC to get me on the right path for my Bub. There is much truth about nurses saving you from the MDs.

Flor said...

I feel so strongly about it. You are so right! But I didn't wait four years. I cannot believe they are still like that!

Cari from Bubble Gum on my Shoe said...

Wow, that is a common story and I've been in your shoes, but not with a four year old. Arrrggg. It makes me want to scream. You were an Angel to that parent. This begs the question {and a good blog post, btw, ahem} how many kids with Autism are 'diagnosed' or nudged by other parents with kids on the spectrum. And also how many times have we heard, don't listen to your pediatrician? Glad you were there!

Jim W. said...

"Moms, you have a wonderful gift of intuition."

Pfft, sexist. Not that you're wrong. . . just sayin.

"I’m curious to know how many of you had a similar experience with your child’s doctor. Did they give you the crappy line about waiting, too? "

Yeah. "Every child develops at a different pace. This isn't anything to panic about. She'll get there."

We elected to panic instead and pursued it.

Missy said...

Yep. I heard that too since he was so intelligent and high functioning.
Oh he's still young. He will grow out of his behaviors and tantrums.

Then this last year at our yearly check-up, it was Are you sure you just aren't to lenient with him? It looks like he gets away with a lot of stuff?

Yes. I just let him do whatever he wants to do and you can tell that in a 10 minute office visit? BTW, he is getting a little more leeway so you don't have a complete autism meltdown in your office.

Accidental Expert said...

Ah, there was a time when we listened to the doctors too. For too long we were told our son was just shy.

It scares me how many families fall prey to bad advice like that.

Luna said...

Where I live, you can't get an assessment without a referral from an MD, either your gp or a ped. GPs won't refer, so they send you to the pediatrician, which has a 6 month wait list. Then the Ped will make you wait at least 6 months before they'll make the referral. And that's IF you're lucky or have an obvious case. It's awful.

bethschubert said...

Oh Angela! I love you so! We were so lucky with our doc... at 26 months he recommended the full gammet and has been on board 100% with the Dude and his needs. I pray often that families of children like mine find the help and resources at their medical practices that we did.

The Farm-Marm said...

My son wasn't sitting on his own at 8 mo. Then he wasn't crawling yet at 1yr. He didn't walk til he was 2. He hardly talked til he was 3 almost 4. He still doesn't really talk. The 2 yo talks more than the 4yo. My son didn't "run" til last year (at 4-he's almost 5)He has spastic hand movements when he gets excited. He has a repetitive speech pattern (asks the same question over and over even when you answer it, at a rate of say 20-30 x's per minute- which makes a 12 min. drive almost unbearable at times) I have him in a developmental preschool program run by the state. He gets excellent care and instruction there, but, I keep wondering if it's enough. Hid Ped says he's lazy, and that we cater to him. I've treated him no different than the other 5 (he's #4) If I had changed my parenting style so much, then why would the younger one be so much more advanced, or on target? I freak out on ocassion that we aren't getting him all the help he needs. The ped says he's not autistic, as does his pre-k teacher, speech therapist, o.t. and p.t. They all seem to agrre that he's just developmentally delayed. But I still wonder if maybe he's on the spectrum somewhere. I just don't know where to go from here.
Thank you for all your info and your wonderful site! I just found it this morning linked from organizing made fun.

Caffeinated Autism Mom said...

Thanks to everyone for such wonderful comments! And, a special shout out goes to all of the amazing warrior dads out there (thanks for the kick in the behind, Jim W!).

Whit said...

I just found your blog through pinterest. How can anyone live without pinterest, right? Well we are in the same spot, right now. My daughter is 5, almost 6, and is in kindergarten. We have been through 3 different pediatricians, 3 physchiatrists and 1 pychologist. They have all said she was bipolar. The first pychiatrist gave her that diagnosis and she has been on medication since. Well we have been doing some research on autism, and she has EVERY SINGLE symptom of autism.. or a form of it from the spectrum. I feel so hopeless right now, I can not even tell you. I have another daughter who we are seeing signs of autism a well. I am a stay at home mom, so I am so ready to take this on! I just don't know where to start. It is crazy too, because we have been to a million doctors, and now it is like I have to tell them what my daughters have, and I am desperate for help. I know this is what they have. At least my 5 year old. My 4 year old has ADHD and we are currently going through doctors also to find help. It is exhausting! We have been doing this for 3 years. Your blog is great, and I am now follower. You have given me great insight and hope that I can do this. If you have any suggestions on what I can do to help them until I find a doctor, I would REALLY appreciate it if you could email me. Thank you so much!

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