and the award goes to

**
“The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance, but live right in it, under its roof.”
—  Barbara Kingsolver  Animal Dreams

I would like to believe that people are fundamentally good. Although I admittedly find much of the population to be somewhat annoying; I really don’t think that man is for the most part intrinsically ill-willed. Particularly doctors. It seems reasonable to assume that people become doctors because they have the desire to help others; and it follows that those who go into the specialized fields of developmental medicine and pediatric neurology likely have the best intentions to serve our children.

So I will give them the benefit of the doubt and presume that when they try to moderate our expectations around what our children will be able to achieve, they do so for what they believe are the right reasons.

HOWEVER, no one has the right to take away hope. NO ONE. Capitals? Bold? Underlining? How best do I make the point that this is something that needs to be shouted from the rooftops?

No one has the right to look at my friend’s five year-old boy and tell her that he will never have language. No one has the right to tell a parent that there is no point in pursuing further therapy. No one has the right to look at a three year-old little girl and tell her parents that she will likely live a solitary life.

Didn’t that last sentence sound absurd? I ask you to read it again.

When we initially had Brooke evaluated, it was by a very well-respected doctor at a well-regarded facility that is associated with one of the most highly renowned hospitals in the nation. When the doctor first delivered the news of her diagnosis, Luau and I were reeling, as any parents would be. As we fought to regain our balance, we asked whatever questions we could manage. Some of them were practical. Some of them were theoretical. All of them were born of the shock, confusion and terror that comes with hearing that your three year-old daughter has autism.

Luau asked the doctor, “What does this mean down the line? What does this mean as she gets older – let’s say at ten? At eighteen? What will her life look like? What does this mean for her as an adult?”

The answer to all of those questions should have been, MUST have been, “I understand your concern and your desire to prognosticate; but I have no way to tell you what she will be like at any of those points in her life. There are myriad strategies and therapies to employ. There are endless variables. There is no way that I could possibly look at an untreated autistic three year-old and tell you what she will be like as an adult, no more than I could look at her older sister and tell you what she will likely do for a living.”

Luau’s questions were as completely understandable as they were totally unanswerable.

However, the well-respected doctor in the well-regarded clinic attached to the well renowned hospital looked at my husband and said the following,

“She will likely live a very solitary life. She will not be comfortable around people and will most likely live alone.”

How dare she? Let me say that again. How dare she? Which document on her wall came with a crystal ball?

I knew in my gut that she was dead wrong. I knew from the moment she said it that it was NOT the Brooke that I knew that she was talking about. My baby loves people. She craves social interaction and her desire for it couldn’t be more obvious to anyone who is looking for it.

Back then she had absolutely no tools to interact appropriately; but I’ll be damned if she wasn’t trying. She would say half a word and then eagerly wait for us to fill in the other half. THAT was Brooke’s dialogue. From the very beginning, she was trying to reach out.

When we entered the school system, Luau and I presented at the very first IEP meeting fresh from that evaluation. I choked up as I tried to tell the roomful of educators that this is what we had been told but that I knew that the doctor was wrong. “She just needs the tools,” I said. “I know the doctor is wrong.”

I will never forget the moment when the school’s staff looked at us knowingly and in a chorus of affirmation said, ‘We have a whole shed full of tools and we’ll teach her to use ‘em all. We live for proving doctors wrong. It’s our favorite thing to do.”

Brooke’s preschool celebrated their last day of the regular school year today. Although she will continue at the school through the summer, it was still a momentous day and the teachers did a wonderful job of commemorating the year. The lead teacher gave each of them their own handmade ‘yearbooks’ showing their (astounding!!) progress and then created award certificates for each of them.

There was an ‘expert block builder award’ and a ‘best trampoline jumper award’. Each child received a special certificate detailing and celebrating their particular strength.

Brooke won the award for the ‘most caring friend.’ She was described as sweet and compassionate and an amazingly caring and concerned friend. Well, guys, you proved that (expletive deleted) doctor wrong in spades.

Together we all proved the insanity of extinguishing hope.

We must not – we can not – let anyone make us doubt what we know is possible. Our children deserve more than that. My ‘most caring friend’ sure does.

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23 thoughts on “and the award goes to

  1. I hear you!! We have had a very similar experience and have since switched doctors. I have every hope he will have an extraordinary life!

  2. %&*! that doctor and yeah, yeah, yeah to the staff at Brooke’s school and Mazel Tov to your wonderful loving girl!!!

  3. most common phrase at our house: NEVER GIVE UP. means different things to different people at different times. but we say it all the time. Good thing you did! For all these “experts” know, many of them don’t “get” it. we are blessed in Newton that many of the educators do get it.

  4. Thanks for your comments. I love the sentiment and had to laugh and share the following:

    We also used to constantly say, “Never give up.” We still do, but in different ways. One day a couple of years back I was out shopping with Katie. I was on one of my silly shopping ‘missions’. In this case we were seeking the ever elusive perfect white t-shirt.

    We went into a couple of little boutiques over the course of this particular day. At the last one of the day, we had poked around a little on our own and then the shop keeper came over and asked if she could help me find something. I told her what we sought and she came up with a couple of shirts, but they were nothing like what I wanted. I sighed and said, ‘Thanks. I think I’ll give up for now,” and started to head for the door.

    Katie grabbed my hand and with these pleading little eyes, pulled me down to her. I crouched down to her level (admittedly not far from where I stand) and asked her what she needed.”Mama,” she said breathlessly (she’s a bit of a drama queen, to be honest, but she really looked upset, so she had my full attention) .. “Don’t EVER give up, Mama. Not Ever.”

    Ah, and just when you think they’re not really listening, you find yourself heading off to another store to find a silly t-shirt that you probably really didn’t need because, well .. how do you not?

  5. I loved this story. Actually I’ve loved them all but this one in particular really moved me. Your little girl is such an angel, she absolutely shines. My son, who was first diagnosed on the spectrum about 7 years ago at about age 2, has been defying expectations from Day 1. I think a big contributing factor has been the fact that we’ve been lucky enough to only encounter amazingly positive and supportive professionals along the way (with one exception, a neuropsych who told me after seeing me and my son for 5 minutes that I needed to get over my need to have a perfect child!). I’m always saying that with our kids, more than others, it really does “take a village.”

  6. Jess,

    What you and Luau are doing in raising your children shines!

    Your writings show such pure love and devotion. You can already see Brooke’s progress and achievement. With the continued effort that all of you- Katie included- are putting in Brooke will certainly reach her full potential.

    Love an hugs,

    Bud

  7. As a professional in this field, I am completely appalled at the thoughtlessness of this doctor. Brooke is capable of ANYTHING! You and Luau are amazing for being able to see the doctor’s comments for what they were: nonsense. xoxo

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  10. When my son was given the diagnosis, the doctor who carried out all the testing had a very Snow Whitish voice the whole time, when it came time to sit down for the diagnosis, she became very authoritative in her demeaner. “I’m saying Autism”….. What?? I was deaf, did she really just say that??? Then the question, what does that mean for my little boy…. “Well, he lacks social reciprocity, most likely will not be socially connected”….. WHAT???? My son, who looks for a hug and kiss who craves the attention of his family and his friends, my son who can’t wait to throw his arms around his daddy after he returns form work…. is this lady serious…. I asked her if his diagnosis could improve- her response “I’ve never seen an Autistic Child spontaneously fall off the spectrum”… Hell, that’s not what I asked!! It was devestating….. she sucked all the hope out of me, before I could even muster some up…. Let’s just say, it’s been 3 months and I can’t wait to see her in 3 more, to show her just how wrong she’s been!! He’s made remarkable improvements and if she doesn’t see that this time – I’m off to find yet another “Expert”!!
    Sometimes hope is the MOST important thing we have in life, and NOBODY has the right to take that away!!

  11. That was a wonderful piece! Tears of joy at the end…and wow, what an awesome school you have!

    What many don’t realize is that the textbooks used in med-school are controlled by the pharmaceutical industry. Doctors are brainwashed by their schooling. I’ll never forget the day when I realized that my father could still be alive today. He didn’t die of cancer, he died of *cancer treatment*. When all along, there were (there are) natural cures for cancer. These cures are being suppressed by doctors who were taught that “those are miracle cures and they don’t work!”. Well, that statement is only partially correct…the cures ARE miraculous because they were put here by the Good Lord himself. They do work, but the pharmaceutical companies cannot profit from them because of laws prohibiting them from *owning* anything God-made, or if you happen to be non-religious person, *nature-made*.

  12. Oh, Brooke’s mom, thank you for sharing this. You never believed them. Keep on bringing it home. Our kids, most caring friend, deserve that. You never believed them – I can’t help but think of all who do.

  13. Pingback: alone « a diary of a mom

  14. When will the doctors learn that hope keeps everything, everything going! We breathe hope and it gives us the will to push, teach, and fight for our kids. No one has the right to take away our breath. No one.

  15. Pingback: A Special Breed of Parent « Beyond Autism Awareness

  16. ““I understand your concern and your desire to prognosticate; but I have no way to tell you what she will be like at any of those points in her life. There are myriad strategies and therapies to employ. There are endless variables. There is no way that I could possibly look at an untreated autistic three year-old and tell you what she will be like as an adult, no more than I could look at her older sister and tell you what she will likely do for a living.” This, will stay in my mind. 5,10,20 years from now. It will stay. Promise

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