Tag - diagnosis

1
Our Story So Far
2
Reflections
3
Waiting
4
Mighty Mito
5
Brain Trust
6
Hope is a One-Way Street
7
My Two Goobers
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Depression
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It’s Not You, It’s Me…
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Joy and Grief

Our Story So Far

Back in college, I took a class called “Oral Interpretation.” At the time it seemed like a good idea, a class to help me overcome my fear of public speaking. It did not. We had to take a piece of literature (a poem, a scene from a play, a newspaper column) and dramatically ‘interpret’ it for the rest of the class, just ten other students. Without fail, mine were dramatic alright: my voice, tinny, would shake; the emotion rising up from my quite-upset-stomach to take residence in my flushed cheeks; the clammy sweat making the shower an hour before unnecessary. I barely passed. In fact — true story — there was another KAL in the class and the professor mixed us up, giving her my C- and me her C+.

Fast forward twenty years or so. Has anything changed? No. Which is why I did not finish reading the following speech. I mean there were over 300 people in the room and they were all looking at ME. Add in the fact I wasn’t “interpreting” a piece of fiction or words written by someone else — no, they were my words and only about one of the most emotional times of my life. When I was asked to be on a parent panel for our EI program’s annual kick-off meeting, I envisioned sitting quietly until asked a question, certainly not giving a speech while standing at a podium, to an audience comprised of every single professional (OT, PT, SLP) who had helped us over the last 2+ years.

I did make it through the first two paragraphs before a kind woman offered to finish reading it for me. It struck me as an appropriate way to bookend everything that got us to where we stand today. Even if someone else had to “orally interpret” it.

My name is KAL and I’m a mom to twin boys who have autism. They just turned three a few weeks ago, so we are very recent graduates of the EI program. We may be unique in the length of time we were with EI: 2 years and 3 months. In that time, over twenty professionals have worked with our children.

Our road to the EI program was fortuitous. One of my twins had to have heart surgery when he was three months old. The surgery was a success, but the original condition and the surgery had put him behind in his physical development. One of my neighbors was a speech and language pathologist who worked with your program and urged us to call for an assessment. That was the fortuitous part. Had we not just moved into the neighborhood and met this individual, we may never have come in contact with the program or, at the very least, we would have lost valuable months. But as a result of her suggestion, we were evaluated and he qualified for PT due to a 25% delay. They were nine months old. After about four months of physical therapy, and soon after they turned one, we noted a language delay in both boys and they were evaluated for speech services as well. By January of 2006, there were many therapists in our lives to address not just the physical and speech delays, but also the fine motor ones and growing sensory aversions.

All along, our pediatrician thought it was great we were receiving early intervention services, but didn’t think they were necessary. All the usual cliches were offered: “They’re boys, they develop more slowly,” “They’re twins, twins have their own language,” “They’ll catch up.” But at their 18-month, well-baby visit, our pediatrician did suggest we call a developmental pediatrician just to “rule things out.” Still, the words “autism” and “autism spectrum disorder” were never mentioned.

Autism meant absolutely nothing to us at the time — something that happened to other children, not our own. The first time I saw the word “autism” was when I googled the Kennedy Krieger Institute and it jumped out at me from their home page. I remember thinking “Autism? But what does that have to do with us?” At this point in time, we had been with the EI program for over nine months. Although there seemed to be general consensus that both boys were experiencing significant delays, the autism spectrum was still not said aloud. I made the call to KKI and we were put on a six-month waiting list — and still I did not understand. As we continued to receive speech therapy and OT and PT, I thought of this time as “band-aid therapy”, a cure for what’s ailing right now, but sure to be outgrown and certainly not needed down the road.

Now, as I look back, Autism was like a wailing ambulance approaching from a distance. Hearing it so far off made me uneasy and more and more anxious as it got closer. I remember saying once: “I feel like everyone is thinking autism and no one wants to say it.” A few months later, a member of our team told us about a new classroom that had only recently started. The prerequisites: an ASD diagnosis and having turned two. We were still on the waiting list for an evaluation with a developmental pediatrician with no idea when we might get in, so we agreed to an evaluation by an EI staff psychologist to speed up the process. I wanted my boys to get anything and everything that might help them catch up.

The autism siren was still wailing of course, and it had gotten much closer and louder, but the day I read the psychologist’s report was the first time it hit full-force. I don’t think I really believed it until then. They were just shy of their second birthdays and we had already been in the EI program for over a year. As difficult as it was to accept at the time, I know that we were fortunate that they were diagnosed so young. KKI concurred with the diagnosis shortly after and we began attending a very special ASD classroom in September of 2006, right after they turned two.

The centers-based classroom with its use of ABA and discrete trials helped one of my boys almost immediately. He was non-verbal when he began and he had several stereotypies that interfered with his learning and play. The change in him was, and is remarkable — he started talking and is a very social child. My other son, who is more severely affected by his autism, did not make much if any progress in the classroom. So in January of 2007 he began a home ABA program: 10 hours a week of one-on-one therapy. Two months later, the one-on-one therapy was augmented to 16 hours a week and he left the ASD classroom. His progress has been slower going, but he is also a different child now.

Part of this program was a terrific parent component that my husband and I benefited from greatly: The Hanen “More Than Words” program, an 8-week course led by a wonderful SLP. It was really helpful and eye-opening to find new ways to communicate with our boys.

To each of you who have been involved in my sons’ lives, either directly or behind the scenes, I cannot thank you enough. It takes very special, dedicated people to work with children who have special needs and we are so very fortunate for the amazing team who helped not only them, but our entire family. I was asked to speak here today, however, with an eye to what I think worked and did not work for us. The following are just a few thoughts I’d like to share.

GETTING THE WORD OUT ABOUT EARLY INTERVENTION: We made that initial call to EI back in 2005 because we were lucky in the neighbor department. I am concerned for other parents who might not have a therapist on their block. Possibly, because my twins were full-term and a good size, I never received information from the hospital where they were born. I’m not an expert in developmental delays, but I’d like to think that there were enough flags: twins, a heart defect, sensory issues, speech delays — that some health care provider would have said “Hey, here are a few programs you might want to know about.” I wish that hospitals and pediatricians would be more diligent about catching developmental delays and referring parents to EI sooner. And I wish EI could do a better job of increasing awareness within the community as well. I’m not asking for a Superbowl commercial, but perhaps they [EI] could rework the spots I do see on public television so that they speak to more parents — those who know nothing about developmental delays or that sometimes it is a euphemism for the autism spectrum.

THE “NO DIAGNOSIS” DILEMMA: Recognizing that EI staff are not allowed to “offer a diagnosis,” I still wish that our team’s suspicions had been shared right off the bat, as in: “We suspect they may be on the spectrum, we encourage you to get evaluated and do some research.” Precious months should not have passed before these suspicions were shared with us. While it would have been difficult to hear, it would have been better to know what we were potentially dealing with as soon as possible. There are practical reasons: It can take months just to get an appointment to get a diagnosis. There are personal reasons: It takes time for parents to work through denial, anger, sadness, and grief, on the way to acceptance.

As parents we look to you for guidance and your professional opinions, especially if we are first-time parents — we don’t always know what is typical or not typical. You have a lot of power AND a lot of responsibility. While I do understand the “no diagnosis” rule and its importance to protect both sides, I also know that members of my sons’ team suspected right away that they were on the spectrum. I urge you to be as straight as you can with us. And I encourage you [EI] to seek some way — some middle ground — that allows staff to share their “informed suspicions” in a proper, non-diagnosis, context.

SERVICES AVAILABLE. My point about the diagnosis dilemma is a plea for better information-sharing about your instincts, or initial suspicions, as they pertain to our children. My last point is similar, but it is a request for better information-sharing about available services. As parents, we may begin as novices when we enter the EI program, but some of us quickly become experts on our children and their delays. While we are endlessly grateful for the intervention we did receive, I wish that we had known, upfront, everything that was available to my sons, especially the more intensive home ABA program. I felt, at times, that knowledge of these services was either closely guarded by staff or simply not known. It should have been determined much earlier that my one son needed more intensive, one-on-one therapy. If we are to be informed partners in determining our child’s IFSP, we need to be aware of all the services and programs that could help each meet his or her goals.

In closing, I’d just like to say that nobody wants to be the one to share a life-altering label with a parent. Nobody wants to deal with the potential fall-out. Just as no two children on the autism spectrum look alike, no two parents will have the same reaction to hearing it. But I submit that it’s imperative that we do hear it and as soon as it is suspected.

While my sons are on the autism spectrum, I recognize that EI serves a much broader group. Some children might age out at three and go into a traditional preschool. But for those of us who will face several years punctuated by annual IEP meetings, I ask that you all, as providers to our children, help us become the most knowledgeable — and therefore successful — parents we can be. Every one of you chose this line of work — you went to school and trained for this — you are experts in child development. Parents of children with special needs, however, don’t have years of preparation or training before being faced with a diagnosis and immediate and potentially life-altering decisions. We become experts out of necessity. That is why we look to you and we need all the information and guidance we can get — whether it’s about available services or our kids.

Thank you.

Reflections

August already. A year since I started blogging, a year since we got our official, official diagnosis. The month my babies turn three years old.

I am struck by how fast it’s all sped by and I wonder if I should feel any different, any wiser perhaps? I’ve picked up battle scars and experience along the way, I guess. Parents of the newly diagnosed actually come to me for answers (I wish I had them, the answers that is).

I’ve learned to go out in the world and look strangers in the eye. I imagine that now I look like a calm mother in the face of her screaming twins, not someone ready to burst into tears in a crowded grocery store. Maybe I even look blasé now, like oh this happens all the time, it’s nothing, look at the sale on tomatoes.

I no longer feel like I just got punched in the gut. The newness of autism is long passed. You could say I’ve learned to roll with it. Acceptance has been hard-won and a tightrope I occasionally teeter upon. What’s hovering underneath? Ah, just a pit of hopelessness, but at least it’s lined with ice cream!

I wear this shawl of motherhood like a ball of steel wool, my love is whole, complete, the softest part of me. And yet I bristle and prepare for battles unknown. How can it feel like yesterday that I cradled these boys in my arms?

Waiting

I sit, I wait. And wait and wait. You’d think I’d be expert at waiting by now, and I may be, but I’m immensely unhappy about it. Tick tock. We went to the metabolic specialist as scheduled two weeks ago. Still waiting for the results! It’s been hard for me to blog lately, I am just so preoccupied … with this, with our schedule, with our upcoming IEP meeting.

I wish I had posted right after our doctor’s visit, because John was amazingly good for the pricks and prodding. He had to fast overnight before the first round of tests which turned in to 15 hours by the time it was all said and done. Happy boy. No, really! He even sat a very bustling restaurant amid the din of humanity — no tantrumming! — for his prescribed high-protein lunch (two scrambled eggs and a yogurt smoothie) before returning to The Lab of White Coats for more pricks.

On any other day, any one of the many stressful events of that morning (which began at 6 a.m. when I whisked him out of bed for our trip) would have created a torrent of dysregulation, but he took it all in stride. Which is why we only took John. His brother would have not handled it all this well. It’s fascinating that because they are identical, the doctors only needed to test one of them. I think, though, that if these tests keep pointing us in this mito direction, that they will also need to put Sam through it as well.

You might say, I’m a bit dysregulated with all this waiting. Hoping it ends soon.

Mighty Mito

I don’t know what to think. We keep getting phone calls from our doctor. Now, there’s a switch. It’s usually impossible to get them on the phone, but here they are, looking for US, they want us to come to them.

We repeated blood work and added some urine to the mix for good measure. This was about a month ago. The results indicate that we’re heading down the path they thought we might be headed down, the one called mitochondrial dysfunction. A brand new world of internet research for me to explore. Goody.

This is what I’ve learned. Mitochondria are the powerhouse of the cell. Mitochondria are inherited only from the mother, not sure why. Their autism could actually be caused by this dysfunction. The dysfunction, which could become “disease” someday, and hey — not only in them, but in me too. So much information.

They have called us back for more blood work and urinalysis, an all-day event that’s sure to cause much dysregulation all around. Can’t wait. I know perhaps I sound flip, but really, I am very anxious for this doctor visit. Something that might be treatable? No, not a cure, but a therapy that might make a nonverbal boy verbal.

Stay tuned.

Brain Trust

An EEG is a daunting procedure for almost anyone, and you’d imagine that for a two-year-old with autism, it would be intolerable. Not so. John allowed 21 wires to be glued to his head while cradled in my arms. The first 3-4 gave him some anxiety but after he realized I wasn’t going anywhere he put his attention to more important things: Bear in the Big Blue House. Good thing I remembered to tuck along Tutter, Ojo, Bear, Doc Hog, and Shadow in our bag. He even allowed his head to be wrapped in gauze after all were duly attached. His look was one of profound boredom, Oh if you must, just let me watch my video.

Periodially, of course, he would remember that there were 21 wires attached to his head and I would jump up to give him a hug or a tickle to distract him.

We’re trying to rule out seizures as a cause of John’s recent sleep disturbances. The EEG was supposed to try to capture him asleep — this from a boy who hasn’t taken a nap in close to a year. But they can glean a lot of information, they said, from the three hours his brain was monitored. I worry, of course, how he did and did not notice the flashing strobe lights that twirled over him. How he looked forward without blinking.

The whole time, his brother was waiting in the Big Important Hospital’s lobby area. My phone kept beeping with cryptic (Sam hysterical) and not so cryptic (Need diaper) text messages from hubby. Big Important Hospital (or BIH) is close enough to be the obvious place for us to go, but it’s far enough that we tried to schedule as much into the one day as possible. Big mistake.

What were we thinking?
(Oh, did I mention the blood draws? The 4 nurses who had to hold each of them down?)

But we were there, and after the EEG we met with the developmental pediatrician for their follow-ups from last summer’s initial diagnosis. Predictably, Sam scored very well on his tests and was spelling the minute he walked into the room. John, I think, was tired from everything that preceded it and was stimming a lot. It was hard to get him to focus.

But troubling me more is the MRI he had last fall apparently shows a possible abnormality in the cerebellum that we’re just hearing about now. His doctors are sending it to a specialist in Chicago to check out.

A very long day. And two very tired little boys.
But Bear and Tutter saved a good part of it.

Hope is a One-Way Street

I think that Hope is the number one hallmark of being an Autism Mom. Of course, this can come only after traveling through the stages of your own particular grieving process: Denial, Anger, Sadness. If you let her, Hope can even go along for the ride with these big guys — albeit smaller, quiet, feeling less entitled to hang around.

Even when I feel hopeless, I know that hope is inside trying to stage a coup d’etat. The hope that early intervention will live up to its hype. The hope that Sam will be mainstreamed sooner rather than later. The hope that John will learn joint attention. The hope that my boys will have full happy lives despite their Autism, or even in spite of it.

Sometimes it seems I will never reach my ultimate destination: Acceptance. The journey preoccupies me. The road seems endless, like driving I95 from Florida to Maine without stopping for a bite. So many forks in the road, which ones should we take. RDI or ABA? The scenic route would be nice, but what if it takes longer?

On my journey, each day is a little bit different than the one before it. I’m keenly aware that my sense of normal has changed. True happiness lies in the small things, in the hopeful things, which sometimes are big! Like getting a phone call from our EI team and hearing that funding was approved for John to receive 10 hours per week of in-home ABA therapy.

And this: while singing “Old MacDonald Had a Farm” with Sam, John shouted out “E-I-E-I-O” with a huge smile. He turned away and refused to indulge me with a repeat performance, but it was a delicious peek at the little boy inside. Hope is making me stop, breathe, and appreciate the sights along the way. I think I’ll continue traveling down this one-way street for a bit longer.

My Two Goobers

Tomorrow John is scheduled for an MRI under anesthesia. I’m pretty nervous about the whole process and what the doctors may or may not find. He is still pretty unsteady on his feeet and the doctors want to rule out things. I guess I’m worried that the things they want to rule out will present themselves tomorrow. But I do know that a lot of kids with ASD have balance issues, so let’s just get these tests out of the way, please!

Here is my little goober playing with his blanket at breakfast this morning…

Last week was our first of ASD “school.” Through our state’s EI program, the class meets three days per week (only 1.5 hours, but I’m ecstatic to be doing something concrete). The ratio is four adults to three children, not bad numbers — and is ABA-based. We still need to find a private speech therapist to give both boys the extra hours they need and will also look into a private ABA program once we see how this program is working for them. I honestly don’t know how much is too much for them at two.

Here is my other little goober blowing bubbles…

Their first week at school, they both: played with pudding, held a fork, sat still for circle time and weren’t crying when I came to get them. What will they be capable of after a year of this? Even in the midst of fear of the unknown, I’m excited to watch them blossom.

Depression

This is hard. Hard to make a daily habit of writing. I could tell you that I’m lazy or distracted or busy with other things and all of this is true. But the real reason, I fear, is that to sit with my thoughts and craft them into my own local coherence is almost too much for me to bear.

We took John & Sam to the pediatrician last week for their 2-year visit. It had been awhile, so we were catching Dr. G. up on the latest developments (i.e., our official ASD diagnoses) and all of the sudden she pelted me with Well, this is big. How are you doing? Are you sleeping? Are you feeling overwhelmed? (and I burst into tears as if I were a water balloon just waiting to be jostled) You need to get on some medication. You need to talk to someone. You can’t take care of the two of them if you’re not sleeping. I think I blubbered something about being fine and about handling everything great and about not believing in medication, and even hell no, I’m not depressed.

Well, the strangest thing happened that night, I started crying. And felt ugh, depressed. (I think Dr. G made it happen—really, I blame her.) And then I looked at the calendar and realized it was 9/11. Five years ago I was still a newlywed about to celebrate a one-year wedding anniversary, motherhood was still just an idea. Hubbie and I still lead a pretty independent lifestyle where meeting after work for a drink and a game of pool was still in the realm of possibility. I remember trying to find my mother all day. She worked right across the street from the Trade Center. Late that night I heard she was walking into her building when the planes hit and was able to evacuate via ferry. I remember the everyday feeling unreal—getting a cup of coffee, grocery shopping, reading a book. A feeling of dread that blanketed my shoulders like a wet shawl. Feeling that dreams were pointless so why bother, why do any of it at all?

But now I have children. The dreams I have are now for them and today their autism is the shawl I try to shrug off. These days I’ve been feeling its weight behind my eyes, it is true. Crying hasn’t felt as automatic, as wrenching, in five whole years. It’s almost self-indulgent. I have nothing left to do but finish and move on.

It’s Not You, It’s Me…

The front page of today’s paper made my husband seek me out with worry. A pretty comprehensive study has found a link between advanced paternal age and the incidence of autism. It’s not often we hear advanced age in the same breath as paternal. Part of me thought It’s about time buddy, but a bigger part of me really doesn’t care. There have been so many studies, so much head scratching when it comes to figuring out ASD, and really — who knows?

I concede to having felt extreme guilt for things I unknowingly exposed my boys to while pregnant (is that what happened?) and to have looked at my husband’s two older boys who are NT and thought, well, there must be something wrong with me then. If truth be told, I secretly thought my advanced maternal age (now 40) not only gave me twins (my aging confused body split its embryo in two) but is also one of the main reasons my boys have delays (old eggs).

Well, today is a new day and I’m tired of thinking about the whys. I adore my children — beautiful, confounding quirks and all.

Joy and Grief

As much as Sam is more engaged with the world, that is how much John is not. I’ve been thinking about my last blog, about joy and grief, and how two such opposite feelings can be felt at the same time.

Ever since I first discovered I was pregnant with twins, my world began to be colored by the enormity of two. Two babies, two little creatures who were going to need me to be their everything. What a miracle to be pregnant at all, but two? I really didn’t know if I’d be up for the challenge. When they were born, the utter exhaustion of caring for two newborns shaped my days and my emerging new identity…I was a Twins Mom. And as the months marched on, I thought I might be turning into a good one.

Today, my life and days are painted with a new defining quality — Autism Twins Mom. Today, Autism seems to get top billing. Autism seems to be the new enormity, the new exhaustion. And yet, there is also joy in tiny triumphs, the eye contact held for longer than ten seconds, the squeeze of the hand, the smiles that greet me in the morning.

Is it wrong for me to feel such happiness on hearing that Sam may outgrow his diagnosis? Am I betraying John, who I love so dearly, just by hoping for it? I know that one day I will instead call myself Mom of Twins Who Happen to Have Autism. It’s getting to that day that worries me, all the joy and grief standing between now and then.

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