Sadness, Anger, and Hope

Today I was told by the development specialist doctor at Stanford that my son was mentally retarded.  It was a severe blow.  I always knew something was amiss but with all the evaluations and therapists and feedback we had received, I never thought it was something he wouldn't grow out of.  The doctor today unceremoniously told me that although it was minor, it was indeed mental retardation and it would impact him the rest of his life.

I asked her, between tears, if he would have to live in a group home when he was older and she said no.  It was mild, he should be able to go to school and get a job, although it might not be a professional position.  Should I cancel his college fund?  She stuttered a bit and then said something about his maybe going to junior college.

She said we were doing all the right things, all the therapies make a difference.  That our upcoming trip to the pediatric neurologist was the right thing to do.  She would see us again in 8 months.  And with that she left me sobbing and devastated, feeling like I'd been punched in the stomach.

I called B who also took it hard and then called my mother.  She reminded me of the time she took my brother to a pediatrician who said he was mentally retarded.  How Scott didn't talk until he was almost 6 and how he had so much therapies most of his childhood and look at him now.  He has a masters degree, traveled the world, owns his own condo and is indeed, fabulous.

She spoke of how this is one person's opinion who saw LM while he was sick, tired (because we had to wake him up from a deep nap to take him in), and for only 30 minutes.  She reminded me of how much amazing progress he has made in the past couple of months.  My mother, in short, gave me back what this doctor had taken away, hope.

Then after many conversations with B, the evaluating doctor called me back.  She felt terrible about the state she left me in.  That she didn't want to take away any of my hope, that they can't make that sort of diagnosis until the child is at least 2 and that she was sorry she had told me what she did.  She said that it hit her most when I asked if we should stop his college fund.  She asked if the social worker could call me (the social worker is the first person who talks with you in the Stanford evaluations).  She gave me her own number so that I could call her tomorrow should I have more questions.  My question at this point is can we see another doctor for his check up in 8 months because I never want to see this lady again.

So we are going to get second opinions, from two pediatric neurologists.  I have to wait until March however.

But I am pretty angry.  This doctor obviously knew she did something wrong to call and basically tell me that.  Yes, maybe in a few years it will be more obvious that LM is mentally retarded but until then, she knows he is getting all the therapies now, she knew about the pediatric neurological visit we have scheduled, did she really have to smack me like that when she knows that a diagnosis like that can't really be made until the child is at least two years old??

After I told her about the call my mother, the ultimate momma bear, sounded like a mobster on speed, ready to fly here and kill the doctor with her bare hands.  It all brought back the indignation of 37 years ago when the doctor declared my brother to be mentally retarded and then dismissing them both like gnats.

She stressed hope and I do have hope.  LM does new things every day and he has perhaps the best sense of humor of any baby I've met.  Even when he is sick, as he has been these past couple of weeks, he is so joyful when playing with us.

He's my baby damn it and no stupid doctor who knew what she did was wrong is going to take my baby's future away from him.

Comments

[Susan]

Oh, Meredith, I just want to reach out and hug you. My heart is breaking for you and B and LM.

Keep saving for college. Put it in a Coverdale, if you want, so that you can access it for any educational need, but invest in his future. Because LM will have a bright and wonderful future.

And the next time you see that doctor, wear shoes with heel and pointy toes. And then accidentally step on her. And kick her. Say, 'Ooops, my bad! Did that hurt? SO sorry.'

[Meredith]

Thank you Susan, I need the hug! We of course will keep saving for him, and moving some of it over to a mutual fund. I will check out the Coverdale.

My mother keeps calling me in between calling everyone she knows. Her best friend, a social worker who spent 30 year advocating for folks with special needs just called to tell me that she herself was diagnosed as mentally retarded when she was 7 years old. Her son didn't talk until he was 4 nor did he walk or crawl until he was 2. He now is a big time editor at Time magazine.

I'm not going to give up hope but I do want to smack that doctor up something fierce. Too bad I can't balance in heels. I'll have to knock into her with my big backpack.

[Michaela]

Severe beatings are called for! They have no right to tell you anything they can't even tell for sure for years from now. And what's with her using the label "mentally retarded" (which is SO freakin' loaded) when they can't tell, either?

Break out the clue by four. Geesh.

[Meredith]

Well, she said he had "global developmental delays" and then I asked her point blank if that was a fancy term for "mentally retarded" and she said yes.

[Melissa]

I also want to give you a hug! That doctor sounds irresponsible and careless and, well, ass-eyed. That is totally outrageous and I'm so sorry that happened to you. Of course you shouldn't give up hope.

I like Susan's kicking idea, also.

[Amy]

I nearly had heart failure when I started reading your email. But I recovered a bit by the end.

Don't listen to that stupid doctor. A woman I worked with in Boston, Rose, was told that her first daughter had such bad neurological damage when she was born that she'd never walk. Rose was devastated. Well, guess what? That daughter is 20 years old now and 100% COMPLETELY NORMAL. Stupid doctors!!!

I'm so sorry you had this trauma. NOT what you needed. Try to pretend today was a bad dream.

Your mom is right, Liam has been doing great and just 30 minutes with a specialist can't reflect that.

[Bonnie]

Oh my goodness, Meredith, I am so sorry. Someone should bitch slap that woman. If I lived closer I would do it for you. Sometimes I truly wonder whether the brain and the mouth are truly connected. (maybe she is mentally retarded). Don't fret. One of my closest friends did not read until third grade. She is one of the most intelligent people I know. Some of us are just late bloomers. I wish these people would recognize that children develop at their own pace. Not every child crawls at 8 months, walks at 12 and talks at 18. I would seriously like to meet these "paper children" that ours are always compared to. Keep saving those pennies. I just heard on the radio that Princeton is up to $42K a year!

[Anne]

I think the thing to stay focused on is that this is one woman's opinion. She is a specialist and there is a possibility that she will ultimately be right. But LM has seen several specialists and she's the first one to make this determination, right? Moreover, it sounds like every specialist LM has seen has had a different take on what is going on. This must be terribly frustrating, not having a clear answer, but it seems to demonstrate that no one can really predict right now how LM will progress.

Continue the therapies; he has made such developmental progress since they started and, no matter what, that needs to continue.

Continue to encourage and enjoy his laughter and sense of humor; this joy should be embraced, especially in such a stressful time. And hopefully he won't become as warped as his daddy.

Continue to raise him and love him like you would anyway; there is nothing more you can do than you are doing now.

The uncertainty sucks! But, where there is the uncertainty, there is hope, and the seemingly countless stories of developmentally delayed children turning out to be perfectly healthy and normal adults.

And, yes, request another doctor. Whether or not she did anything wrong with her premature diagnosis, whether or not she is highly recommended and has years of experience in her field, she has lost your faith and respect and you need to have those in the doctor who will help your son.

[Amy]

Meredith,

I have been thinking about you all day and am just getting madder and madder. Did this doctor think she has a crystal ball - "Your son will go to a community college. He will have a job, but not a professional one. He will not live in a group home." What the hell???? Is she a doctor or a fortune-teller?

It's easy for me to say ignore her, but I know the psychological damage (to you) has been done. Maybe this will give you even more resolve to prove her wrong.

Hug that sweet baby for us!

[!ul]

Oh god, Mer... I am so terribly sorry for the pain you and your family have gone through. Ditto a million times everything everyone here has said. I'm definitely not a doctor, but it seems to me that when an official diagnosis can't even be made, maybe the focus should be on how to help LM NOW, rather than ill-informed speculation on his future. And no matter how the genetic dice fall, LM is still a sweet, adorable little guy who's lucky enough to have parents who clearly adore him and will do everything to help him learn and develop. Of course you're going to go grieve over this, and my heart ache for you. But he's still your baby, and you're still his mama, and all the reptilian Stanford bitches in the WORLD can change that.

[Jul]

Aaaagh! "CAN'T change that" is what I meant!

I am still so mad at that woman that I found myself thinking, "... but why would I know how to type? I only went to a JUNIOR college!" Bitch!

[Anne]

And by the way, if someone evaluated me after I had been awoken prematurely from a Sunday afternoon nap, they would come to the conclusion very quickly that I could not focus on anything for more than 3 seconds, that I spoke in little more than grunts and one syllable words, and that I was a supreme bitch to boot!

[Meghan]

Meredith, I am so sorry for all the Hell you are going through. That doctor is a royal asshat. Get a second opinion, but keep in mind that your opinion is the most important. You know your child better than anyone. Don't let anyones opinion limit that sweet boys potential. HUGS HUGS HUGS to you.

[bri]

Tire iron, meet doctor's car.

[minnie]

well, that doctor is a total jerk.

i am happy to be a part of you and Bri's and LM's community.

hugs and kisses to all three of you!

[minnie]

what.a.bitch.

omg. i just keep getting more and more pissed.

[Melissa]

Like Minnie, I'm still thinking about this and it makes me furious. It's like the doctor dropped a bomb on your house, brushed the dust off her shoe, and then called from her cell phone on the way out and said, "Oops! My bad!" Inexcusable.

Anyway. I'm sure you guys are plenty mad enough but I just wanted to let you know I'm thinking about you.

[Scott]

As mom has already told you - I certainly turned out just fine. And so will LM, I just know it.

I am floored as to how that pathetic excuse of a woman ended up in her current job without any clue about people and interpersonal skills. You think mom is pissed off? Had I been there I would have thrust a Viking spear through her chest on your behalf.

Love, your bro.

[squid]

Focus on the cute sweet boy. Focus on what he can do, on how happy you are together.

Divide your brain into two and set the other part onto getting another, more helpful evaluation.

[Linda]

OH MY GOD!!! Two simple words...FUCK HER!!! Coming from a mom who has a son with global delays, there is nothing more frustrating than either doctors who suspect nothing is wrong and doctors who suspect everything is wrong. There is absolutely NO WAY that they can tell at this point. What do you do...you do the therapies. No matter what the diagnosis, you're still going to have to do the therapies. LM will show the world what he's made of. There's a very important word with regard to special needs kids...SPECIAL.

[Pixiedeb]

Hi, I'm on you're brothers' friends list on lj and read about your plight. Hope you don't mind me posting.

I read the bit about your brother not speaking until he was 6, and just wanted to let you know my father was the same. He didn't speak until he was finished the first grade at school. It wasn't that he couldn't talk, he just chose not to. My father is brilliant, and they all thought he was mentally retarded as a result of his never speaking too.

Try to put what she said out of your mind. She doesn't know. She can give all kinds of possibilities, and even probabilities, but at such an early stage of life, they just don't know. Besides, you'll know long before she does anyway.

Best of luck to you and your son in the future.