the news

*

Well, the news is in. The reports are finalized. The diagnosis is officially .. well, estimated.

The quick version is that, as I’d suspected, our girl walked into a(nother) mine field and somehow managed to get no more than grazed by a bullet. She does have a form of epilepsy, however, it is (almost, mostly, sort of, we think) benign. It does not call for medication. There’s a good chance that she will outgrow it. If you’re going to have epilepsy, it doesn’t really get much better than that.

The bad news is that this didn’t turn out to be the key to the mystery of her loss of ground in language. There will be no magic pill to kickstart her stalled progress. The good news, however, is that, sans magic pill, there will be no scary side effects with which to contend, nor a mama in a constant panic about the long-term effects of pouring industrial strength drugs into a 49 pound child.

According to the epileptologist (yeah, that’s a word), the abnormal activity in her EEG looks (mostly) like the activity found in benign bilateral rolandic epilepsy. Of course, my sweet girl is never one to keep things simple (hence all the parentheses), so we don’t get to stick with that as a diagnosis. Instead, we’re going to call it ‘a-typical benign rolandic epilepsy.’ That’s my kid — even within the realm of a-typicality, she goes for extra credit.

The way that the epileptologist explained it to me, she has abnormal electrical activity in her brain, but the spikes that she experiences do not (currently) fall into the pattern of rythmicity or constancy of seizures. If seizures are fires, she’s got randomly popping embers. The embers are neither bursting into flames nor popping with sufficient regularity to be (at least obviously) destructive.

“So what do we do now?” I asked (again).

The answer was essentially, “Be vigilant.”

We were referred to this particular doctor for a reason. He has led the charge in researching epilepsy and its relationship to autism. He explained that if you were to subject the autistic population to EEGs, 30% of autistic people would have abnormal results similar to Brooke’s. The number skyrockets to 60% when that group is narrowed to those with (pre-DSM 5) classic autism. Approximately a quarter to a third (of the whole) will experience actual seizure activity in their lifetimes. (These stats vary wildly depending on who you ask, as the research is still relatively thin.)

Those numbers are scary. And they lead to far more questions than answers. And while knowing that our kiddo is in the 30 (or 60)%, doesn’t actually change her risk profile, it sure as hell changes our very tangible awareness of it.

“So what does all this mean?” I asked (again).

“It means that she can’t be alone in water,” he said. “It means that she can’t climb to the top of a play structure without someone nearby. It means that, well, we’re not entirely sure what it means.” Okay, maybe that last sentence wasn’t exactly verbatim.

“So we’re back to square one with the language question,” I sighed. “We still have no idea why she went from the 37th percentile in language to the 1st.”

He was quiet for a moment. And then he pulled words out of my head and said them aloud into the phone.

“Mrs. Wilson,” he said, “I would point out that her neuropsychological report shows stalled progress in language, which is very, very different from regression. She has not lost skills, nor backslid from previously reached milestones, but rather, her progress has not kept pace with her peers. As dramatic as the contrast may appear year over year, autism, as you well know, is a pervasive developmental disability. This will happen from time to time. She may periodically plateau, lose ground, or max out in a particular area. Try as you might, you may not find another explanation other than autism itself.”

The words had been rattling around in my head for weeks, but I was grateful to him for giving them a voice.

A-typical development … progress at a different pace, skill acquisition in a unique order, development that follows an unpredictable course. C’mon, Jess, you know this stuff. 

In 2009, I wrote the following, then cited it again last August. It’s funny what we learn, then know, then need to learn again. And sometimes again still.

“Her development will not ‘catch up’, per se; it will simply happen in a different order.”

[Those words were spoken by the] first specialist we ever saw. The speech therapist who directed us to the autism clinic – Do not pass Go, she had said. Do not collect $200. Just get help. The one who spent twenty minutes with our baby and knew, just knew. And she was right about so many things. Not a delay; a disorder. A different order.

I’ve come to dislike dis-order. I prefer Brooke-order. She shows us time and again that she will come to it, whatever ‘it’ is when she is good and ready. I guess our humble job is simply to make sure she’s armed and ready when that time comes.

In response to comments on that post, I wrote the following:

you know, this whole idea of breaking apart the ‘delay’ model meant a much bigger paradigm shift for me. when those words sunk in (they were in response to my ignorant question, ‘so when will her speech catch up’?’) they changed the whole visual for me. they did away with the entire idea of linear development. so, to my mind – there is no finish line. there are no lines at all.

people often ask me which ‘end of the spectrum’ brooke is on. i try to explain that to me, the spectrum is more of a three-dimensional sphere. some people have skills A thru D and challenges F thru L. some have strengths M, J and Q and some have deficits P, R and V. it’s round, it’s malleable, it’s unpredictable. and so it is with development.

i picture skills and tools and milestones all mixed together inside the globe. when they’re ready, armed with whatever tools we can give them from the outside our kids will grab them and make them their own. by definition, though, the globe has no ‘end’ – no finish line as it were. but i think in some ways, that’s the way it should be. hell, i’d hate to think that any of us was ‘done’ developing. i’m sure not and i’m 28. (or not)

So there it is. My kid is in the sphere – HER sphere, filling her tool box with tools, making staggering, delicious, fulfilling progress in HER OWN WAY.

She is, as she does time and again, reminding us that she follows no one’s course but her own.

As for the epilepsy? Well, it is what it is. It’s part of my girl. Part of her story. Part of what makes her who she is and what she will be. And whatever it delivers from here on out, be it nothing or be it something, we will be here to help her handle it.

I thank you all from the bottom of my heart for your advice (and for holding onto it when I wasn’t ready to hear it), your prayers, and the overwhelming love that you showed to my girl and all of us during this crazy time.

I ask that, if you’re willing, you keep praying – for those who still await their own answers and for those who are now trying to process entirely new realities.

To them I say, we walk with you.

Autism Speaks Epilepsy Resource Page

36 thoughts on “the news

  1. I note that among the physical “what it means” in terms of being vigilant — water, play structures — are things that I’m sure you’re doing anyway. We do that too… Joy swims, Joy climbs, we’d be there even if the seizures weren’t.

    Amen on the developmental trajectory thoughts. N of 1, my dear. She’s an original.

    Hugs!

  2. All I can say is I love you and it is what it is. Brooke will be
    Brooke in all her wonderfulness. We all have to breathe through this.

    Love you,
    Mom

  3. She may have stalled in her progress of language compared to her peers but it appears that she is making other gains- just reread some of your posts that you have written where she is playing creatively and some of her responses lately- there is a lot to cheer about! You have celebrated her as a person. Continue!

  4. Standing strong with you, my friend. If there is one blessing on this path of raising child(ren) with autism it is this: You never have to walk alone.

    Love you, love your girls, I even love that crazy near-naked running hubby of yours. xoxo

  5. I am so happy for you that you received some answers. So often, the not-knowing is the scariest part of the journey for us moms. We will continue to pray for you and your family. I hope that at least having some answers will help with your own anxiety too. Take care of yourself. You’re going to need some extra energy to keep up with that busy, healthy little girl – and what a blessing that is. {{Hugs.}}

  6. Continued prayers, for a variety of things, not the least of which is that you will not listen to the little voice in your head that will try and interfere with you getting healthy!!
    Go C’s!!!!!

  7. Thank you so much. I found out things about my own daughter from YOUR doctor this morning!!! Not having real answers is so frustrating. It’s nice to have a real understanding thanks to a doctor who really knows what he’s talking about and how to explain it in layman’s terms. Having access to doctors who know ANYTHING about Autism here is impossible. Thank you again for opening my eyes to new information!!

  8. Yea, boo, uh, what reaction is appropriate. Boo to epilepsy, yea to it not being the worst kind? How about, viva la difference? Okay, yea Brooke! I will celebrate the perfectness that is Brooke alongside you just you, I am sure, celebrate the perfectness that Isabella is alongside me. What a journey we are taking together!

  9. Glad to know it’s not actual seizure-patterning. Like elvissightings said, you pretty much do all those precautionary things anyway, so you’re a leg up already. 🙂 I’m grateful that you have a good doctor added to Brooke’s already awesome team.

  10. My youngest daughter was diagnosed with benign rolandic epilepsy at age 8. I remember feeling many of the same emotions you’ve written about. Terrified and yet grateful (having worked in a pediatric EMU, I had seen 1st hand the various forms of epilepsy up close). I had to learn (once again) to breathe through the fear, the unknown, the “nothing really to do at this point.” This past year we once again went through the 24 hour monitoring and found that the spikes were gone. Everyone’s journey is different, but sometimes it’s nice to hear that someone else has come out on the other side of this. Thank you for sharing so honestly.

  11. I am glad you have SOME answers! It is very difficult when you just have questions and everyone around you is saying, “let’s try this and see what happens.” PEACE

  12. I love the idea of a sphere…that is so similar to how I feel about my son. Thank you for sharing…and know that you and your family are in my thoughts.

  13. Just had our first EEG the other day. The preliminary results showed atypical activity on one side of the brain. Next step is an MRI.

    My NT 9 year old has perhaps said it best. “Well mom, I guess we’re taking another class.” Me: “What do you mean?” Him: “Well, when we found out the J had autism, we took the autism ‘class.’ We learned everything we could. And now we have this electricity thing in his brain. It’s another class to take.”

    More questions than answers as per our new normal, and another “class” to take. Sometimes clarity comes from the mouth of a 9 year old.

  14. Pingback: A Word About Order | Pucks and Puzzle Pieces

  15. My daughter has had periods of progress and plateaus. At 11 she’s not at the skill level of her peers, but she continues to make some progress every year. They’re baby steps done in her own way at her own pace.

  16. I’ve actually been thinking about your different order post recently. Our daughter has also “stalled” in a couple of academic areas but in other social areas we are seeing great development. She has started tellling “Yo Mama” jokes with her brother. Totally inappropriate for school but very appropriate for a 9 year old. I think the word “resting” rather than stalled is more appropriate for her as she just seems to need a break in some areas for a while.
    Wishing you all a relaxing and healthy weekend.

  17. Hey Jess.. keep reading your posts, but commenting for the first time… I have a non -verbal son , almost 12, and as a parent all I can confidently claim is that I love him totally from the core of my existence n will be there for him as long as my last breath supports it … U are very brave … n your words bring a lot of hope and encouragement to all others … God Bless both your girls. I strongly believe that God has created this parallel world to reinstate the faith in the goodness of HIS creations… probably this is how innocent and selfless and loving we were when HE created us.. but along the way we lost it big time… so HE sent his angels amongst us as a reminder… some time it gets really tough on us parents but we cannot let HIM down and the Trust HE has placed in us, n you my dear are a great soldier who is doing it wonderfully well… love to all of you…Take care !! 😀

  18. I’m so proud of you. In the time I’ve known (and loved) you, your growth has been the most astonishing. And like her Mama, Brooke will (and does) find her own way.

    The vigilance, the prayers – well, you have a village here.

  19. I love this – I never thought of that way – that it’s not so much delayed development, but developing in a different order. We’ve used and had said to us so many times, the phrase “catch up.” So ““Her development will not ‘catch up’, per se; it will simply happen in a different order” really makes me think.

  20. One big thing seizures (temporal lobe) have changed for us is baths. My girls was old enough to take a bath on her own when she started having seizures. Now someone has to be with her; she’s only 8 but wants privacy in the bathroom so that’s a constant battle. It’s take a shower alone with the door unlocked or take a supervised bath. It’s hard for a kid to have to hear they can’t do something because they might have a seizure. It’s also frustrating how little even the experts understand about epilepsy. Hang in there.

  21. I am so happy to hear that you got some answers and that you can begin to let your guard down just a little bit. The diagnosis roller coaster isn’t for the faint of heart but you made it through another trip. Hug that beautiful girl and delight in her. She is a small, fierce miracle.

  22. This is why for us I like the idea of the puzzle. My son in real life is amazing at puzzles. Math is his strength and so are puzzles. But I also think most of what we deal with follows the metaphore of a puzzle. It is all a puzzle it is not linear it does not fit together like it would if it were square blocks. Some times their are some defined edges but most of it is like the middle of the puzzle. And for me I don’t know the end of this story so I do not know the picture on the completed puzzle. But we keep putting in the pieces. Mostly my son puts them in but we make sure he has everything he needs to be able to do it. Sometimes with some therapy, a great teacher or the right med he can suddenly put in a bunch of pieces or at least progress at a steady pace and I feel like i am getting a glimpse of the finished master piece. But other times the puzzle sits for a while and just is what it is. I many times want so badly to know what the picture on the puzzle is. I have asked professionals if they know. I keep guard to make sure no one messes the puzzle up and sets him back. As I learn more about how to help make the process smooth. I have come to really enjoy just watching him be the puzzle master that he is.

  23. I just wanted to say thank you for sharing your journey. My youngest was diagnosed PDD over a year ago. Your words help me to understand more the world we are in. And I’m going to borrow your term Brooke-order for my boy. It makes so much more sense than dis-order and gives me peace in some way. Fight on.

  24. oh gosh, just have to say I’m breathing for you… that as you put it, you dodged a bullet on this one….. thank you for keeping us updated and sharing your oh so personal story time and again…. it is within our community that we find strength.

  25. Thank you so much for this post. My husband and I have been witnessing strange “night terrors” with our 4 year old Autistic daughter for a while now. We thought she was having seizures as well. while doing research we found out about rolandic seizures and thought this has to be it. All of the symptoms matched up to what we were seeing. We also went to our neurologist and had an EEG done which showed some abnormal activity but the Doc said it was nothing to worry about and called them “sleep disturbances”. It is so frustrating and so scary to see her in this state and is impossible not to worry. My prayers go out to your girl too!

  26. Hi – I read this post several months ago after my own daughter was diagnosed with epilepsy. I’ve read your posts from time to time as my daughter exhibits some autistic symptoms but has no formal diagnosis. I just read about Jenny McCarthy’s son not having autism, but instead having Landau-Kleffner syndrome which I looked up on WIkipedia. It sounded a lot like your daughter’s seizures because of the language loss and I am wondering if a doctor has ever looked into that for you? Apparently it’s diagnosed best through an EEG which you would have had as part of the epilepsy diagnosis. Just trying to pass on some information in the event it’s helpful. Thanks for writing and posting!!

    • I cannot presume to know your family, but I feel connected to you in so many ways. I have been catching up on Diary, after coming across it recently and it has changed my perspective in so many ways (we are facing some very difficult decisions regarding our daughter’s education ). Our daughter was diagnosed with ASD, Disordered language and Benign Rolandic Epilepsy at various points in the last few years.

      In many ways we have walked the same road as you. We have felt the fear, the pain, the despair. We have experienced the joy and amazement. We walk with you. This path takes us down the scenic route. We arrive later than others. Sometimes we don’t arrive. That’s ok because this is our journey. And sometimes we meet some lovely people who also take the scenic route (like you!) and we share some tips on where to find great lookout posts or picnic spots. And where to avoid heavy landslides and cliff falls. We journey together. xx

  27. My daughter is scheduled for a sleep-deprived EEG to test for seizure activity. Do you have any other resources to help me? I am terrified.

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