January 14, 2019

Taking a Chance

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:50 am by autismmommytherapist

“He sounds like such a man,” my friend said after hearing some deep guttural stims over the phone as we caught up on each other’s lives and vented about our extra holiday pounds. “I know, he has the beginnings of a mustache” I replied, thinking happily that at least this would be my husband’s domain.

I have my limits when it comes to child care.

The truth is, I’ve been in a little bit of denial over my eldest son’s (who has severe autism, OCD and tics) impending manhood, in part because he is now bigger than I am, which can be problematic for a host of reasons.

The other reason is that each step closer to adulthood is one step closer to my not being here for him, and that’s just not a place I like to visit often.

Trust me, it’s not a pretty place.

Despite my reluctance to contemplate this the reality is that in five short years my son will be twenty-one, and will age out of his school entitlement.

I’m not sure who will be the most unhappy about this. I believe it will be a tie.

I’ve heard the post twenty-one autism world described as a “cliff,” but to tell you the truth I’ve seen my friends with older kids on the spectrum make it work for them, so to me, there’s still hope.

Of course the next five to seven years is when the “autism bubble” bursts, so not as sure we’ll be as successful.

The truth is I’ve got to start thinking about what the landscape of Justin’s life will look like, whether I want to or not. I’m hoping it includes a day program. It would be lovely if he worked a few hours a week or volunteered somewhere too. And one day, eventually, he will reside somewhere other than his mom, dad and his sibling.

His brother has made it clear he’s not taking him on full-time. And while I get that he’s eleven and that taking care of his severely autistic brother doesn’t sound as fun as time on Xbox, I’m pretty sure his opinion won’t change with maturity.

Call it a mother’s instinct.

Someday, Justin will live in some type of group home placement, will have to relinquish his routine and the ocean mural on the bedroom wall of the only house he’ll ever remember, and make his way in a group living situation.

I have read and spoken to so many parents who are keeping their kids until the very last second.

I have read and spoken to so many parents who want their kids in a residential placement as soon as possible both for their ability to be as independent as possible, and for their own freedom as well.

I don’t believe the first group are martyrs.

I don’t believe the second group are callous parents.

I think in some cases it’s easy to see what’s best for both the adult child, and the parents.

I think in some cases it’s near impossible.

Impossible for us because I know in my heart he wouldn’t want to change a thing over his eighty-something years, and that is just not an option.

Despite the fact that I’ve been told my choices (short of winning the big lottery) are ridiculously limited, I know I have to start thinking about these issues and how best I can prepare Justin for such a tremendous move.

Given that he’s only spent about a dozen nights out of his own bed in the last ten years (yay Disney!) I’m pretty sure I need to step up my game and address this first.

Since one of the biggest challenges for Justin living away from us will be sleeping in a new environment, I know I’ve got to create other opportunities for him. A lovely fellow autism mommy mentioned a local camp that does both day camp and sleepovers, and trusts them implicitly.

I can tell you when we spoke about it my heart both lurched and soared simultaneously. Would he sleep at all? Would he find it even the tiniest bit fun? Would I get to go out?

Would he understand that I’d come back for him?

To say that I’m not sure how this will go would be a massive understatement, but I’ve decided I’ve got to give it a try, and for as long as the camp is willing, keep trying. I’ve got to expand his horizons. He has to try new experiences that will set him up for success in adulthood.

He’s got to see that as long as I’m able, I’ll always see him again.

Summer camp is just a few short months away, but it will be here before we know it. Wish us luck. And if you’re like me, in a situation where you’re child’s adulthood is on the horizon and you want to start preparing him or her, now’s the time to push the envelope. Take some risks. See how far you can stretch them.

Who knows. Maybe we’ll all be happily surprised.

My fingers are crossed.

 

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December 14, 2018

The Future

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:51 am by autismmommytherapist

If you are just beginning your autism journey with your son or daughter, I imagine you are feeling at least a bit (understatement of the year) overwhelmed.

Perhaps you’ve been able to secure that elusive appointment to get your child a proper diagnosis. Maybe you have passed through that gauntlet and are already lining up meetings with Early Intervention for both you and your kid. Perhaps you’re at a later stage and are in the midst of evaluations with your child’s school district to get him or her enrolled in what you hope will be an appropriate (and excellent) program.

I imagine that wherever you are in this process, whether during it or after it, you are very, very tired.

I am fifteen years into our autism journey with two children on the spectrum, but I can remember those days like they were yesterday. It seemed for years we were living from one doctor’s visit to the next, one evaluation/meeting to the next. It was a relentless round of hurry up and wait, until finally we moved and got our son, Justin, into his local school district.

And yes, I too was very, very tired.

We were fortunate in that most of Justin’s therapists and teachers were wonderful, however most people do not deal with dozens of practitioners without having at least one bad apple in the bunch.

For us, it was an Early Intervention provider who informed me with absolute certainty that my twenty-month-old would never speak or live independently. In truth, she turned out to be right.

But that’s not the point.

I will tell you this. At the tender age of eighteen months my eldest son was diagnosed with moderate to severe autism. He had no words, had frequent meltdowns, relentless insomnia, gastrointestinal issues, sensory issues, and was the pickiest eater on the planet. This was 2004, and a diagnosis at this age was generally unheard of, but we were fortunate that a developmental pediatrician was able to recognize his issues for what they were so we were able to start various therapies with him. He was not even two when he started with ABA and speech therapy, barely walking when this particular therapist graced our doorstep.

She had no right to say what she said. There is absolutely no way anyone can predict the trajectory of your child’s future when they’re this young. And while my gut instincts told me Justin might remain at the more severe end of the spectrum, the elusive possibility of him having some semblance of functional speech and some measure of independence kept me going in those dark days when I was my son’s primary therapist. With that one sentence his therapist robbed me of hope and plunged me into days of despair before I was able to realize that she wasn’t omniscient, and was far from having all the answers.

She never should have said what she did. And I wish I’d had the energy to tell her that to her face.

Fourteen years after that chilling moment my son does have a few words, but more importantly he can communicate beautifully with his iPad. He will never live independently, but is wonderful at getting his needs met by himself, excellent at the execution of completing a task. He eats (even a few veggies!), sleeps, and no longer has many sensory issues.

Most importantly, he’s one of the happiest children I know.

Ten years ago our second child was diagnosed with regressive autism, and at first his trajectory seemed to mirror his brother’s. Zach was eighteen months when he experienced two back-to-back illnesses which seemed to rob him of speech, appetite, and extinguish the light in his eyes that made him our boy. I remember thinking at the time that one of his therapists could have said the same thing about him that they did about our older boy, but fortunately all held their tongues.

And ten years later he no longer has special education status, has friends, made the distinguished honor roll in his first marking period of middle school, and most importantly, loves his life.

To this day, both of my sons still surprise me with their skill acquisition, their ability to adapt to different environments, and their ebullient souls. Fifteen years ago I could never had predicted I’d be at this point with my two boys, and my hopes for their happy, safe and productive futures were what kept me going during our darkest days. Nobody can predict your child’s future when they’re very young, not even the most brilliant doctor or the most experienced therapist. Don’t ever let anyone rob you of hope that your child will one day be happy too.

And never, ever give up in that pursuit.

 

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November 28, 2018

Go with Your Gut

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 9:42 am by autismmommytherapist

It all started so slowly, so insidiously, I barely noticed.

In late October of 2017, there was the repetitive movement of a slight bending of the head and neck of Justin, my severely autistic teenager. This followed with a twitch of the mouth here and there. Neither were a constant, but both occurred enough that I made a mental note to tell his neurologist when we returned from Disney in early November.

Disney must be magic because I witnessed nary a twitch the entire five days we were there. I remember thinking on the plane home this must be one of those “autism things,” events that he usually cycles through and which eventually stop.

Within seconds of entering our home he is bent over at the waist, eyes closed, moving up and down, sitting on the floor, rising. He does this for thirty minutes straight. Something tells me the magic of Disney has worn off, and we are in trouble.

Thus began a year-long odyssey to diagnose and treat my son.

I notice that he is now doing some eye rolling when he’s in these strange postures, and when I contact our neurologist I mention my concern about seizures. We are able to schedule an EEG for ten days later, where the activity is captured, and seizures are ruled out. Our neurologist then recommends an MRI which will require sedation because we could never keep Justin still for that long, an appointment which requires a two month wait and will hopefully rule out tumor. We take him, he is a trooper. The MRI is fine.

Justin is not. The movements are getting worse and worse. At times he is engaged in them for ten, twenty, thirty minutes at a time. He has them at school, at home, in the community. My once mostly compliant child’s movements make it a struggle to get him out of bed, on the bus, to the dinner table, out of the bath tub. My previously joyous child is devoid of delight, lacking in the smiles and laughter that were his trademark.

Despite how difficult his behavior has become, it is the latter issue that breaks my heart.

My husband and I know the value of garnering second, third, and even fourth opinions after fifteen years of doing the autism dance with both of our boys. Justin goes to CHOP to see a developmental pediatrician annually just to keep him in their system. That December we end up seeing doctors who are not our “regulars,” and they suggest he might have mitochondrial disorder, and recommend we see a physician within their Mitochondrial Disorder Program.

The following month, we do. Our doctor states unequivocally he does not have the disorder, but he might have catatonia.

My heart literally skips a beat.

I don’t know much about autism-related catatonia, but what I do know is not promising. Of course my husband and I do our Google research, and the prognosis for this disorder is not good. If it becomes malignant catatonia there is a chance he could die. The treatment is benzos, and in difficult cases, electric shock therapy.

We are sickened, and distraught.

At about this time our neurologist contacts one of his colleagues who is a movement disorder specialist. He sends him videos of Justin and comes back with a possible diagnosis of tardive movement disorder, a result of a medication we’d put him on years ago for aggression. We don’t rule it out, but what’s he’s doing doesn’t look like videos we’ve seen of the disorder, and we feel we want another opinion. I contact Kennedy Krieger (where ironically Justin received his actual autism diagnosis thirteen years earlier), and am rewarded with an email from a psychiatrist who specializes in catatonia. She won’t take him on as a patient but will see him for a one-time consult. While we wait for the appointment we put him on medication to help him, and for two weeks he seems to turn a corner.

It works for a while, until it doesn’t anymore.

We meet with the specialist at Kennedy Krieger, who sees him do the movements and pronounces it slam-dunk catatonia. Jeff and I are somewhat relieved to at least have a diagnosis, but sobered by the implications. I am always the “big picture” one in the relationship, and all I could think was, what if this gets worse? Who will help him when he’s seventy?

He was doing so well even with severe autism and OCD, why this too?

We monitor Justin closely, and he doesn’t get worse, but he doesn’t get any better either. His neurologist consults with a colleague in Israel who after viewing his videos suggests drug-related dystonia, different than tardive dyskinesia but also in the movement disorder family. We wean him off the potentially offending drug, see a recurrence of the aggression it had quelled, see very little improvement off the medication.

I feel like we are missing something. None of the myriad diagnoses he’s had seem to completely fit. The movements completely disrupt his life. He has to stop the horseback riding lessons he’s loved since he was five. He is asked to leave a camp for the first time in his life. His personality has changed drastically. His father and I are overwhelmed.

I can’t even imagine what it feels like now to be my son.

One night my husband decides to do some more searching, and he finds a neurologist who specializes in movement disorders at UPenn. We miraculously get an appointment for three weeks later. We expect he will corroborate the diagnosis of either tardive or dystonia as we no longer believe he has catatonia, and are hoping for some other treatment alternatives and a fresh look. That day we have to battle Justin to get him out of the parking garage. I recall thinking I hope this visit is worth the fresh bruises on my husband’s arm.

It turns out, it is.

After a very thorough examination our movement disorder specialist lets us know that both from the videos and what he’s seen in his office he believes Justin does not have tardive or dystonia, but instead tics. He doesn’t qualify for a Tourette’s diagnosis as he doesn’t have the verbal piece, but he is confident in his diagnosis, and both outlines a treatment plan and a referral to a doctor at CHOP for a second opinion with a colleague he works closely with.

This is the first diagnosis he receives that feels like it fits.

We are to start by increasing a medication he is already taking, and within a week we see improvement that has been consistent now for three months. We follow through and make an appointment with our UPenn’s doctor’s referral at CHOP, and he corroborates the diagnosis, and says it is common in autistic patients with the onset of puberty. He agrees with us that he is doing well and does not recommend any changes medically from the medication we put him on in September.

It’s now been thirteen months since hell descended on our son. He is improved, but we still see the movements, mostly in his face, neck and arms. He is however infinitely better at school, at home, and when we take him out in the community. We’ve seen some of his joy return, although the smiles and laughter are somewhat fleeting. He seems more at peace with himself.

He wants me to hug him again.

I don’t know how this will all turn out- of course I can easily say this about autism in general, and that this is just one more added degree of difficulty. I will, however, say this. As a community, our parental gut instincts are invaluable. I believe we finally have the correct diagnosis for Justin, but had we stopped asking for opinions months earlier we would never have gotten to this point, and he might have received the wrong treatment which could have had lasting consequences. I learned a lot from this odyssey- if a diagnosis doesn’t feel right, keep asking questions. Don’t worry about hurting your child’s primary doctor’s feelings if you seek a second opinion- a good doctor will advocate you do that, as ours did. Finally, especially with non-verbal, severe autism, it can be extremely difficult to diagnose things as they come up since our children can’t self-advocate. We have to do our research. We have to be relentless.

We have to never give up.

 

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October 1, 2018

Cycles

Posted in Life's Little Moments, My Take on Autism tagged , , at 1:30 pm by autismmommytherapist

As many of you know, we have been having a really difficult time with our severely autistic fifteen-year-old for about a year now. We have been to a myriad of doctors and received a multitude of diagnoses, and finally believe we have found the right one, and a treatment plan that is at least working a little bit. At this point any progress is good progress, and my boy seems to be relieved a bit from the tics/stereotopies he’s been diagnosed with recently. This has brought him relief, and his family as well. He is eating better, sleeping better, able to transition better, and much easier to take out into society, which has been a focus for this family since before he was diagnosed.

I’ve finally had some time to reflect on the past year, what I’ve learned, what I wish I’d done differently, and I’d like to pass on any wisdom I can to other families going through difficult times, especially when adolescence comes to call. On that note I was so enmeshed in watching my son struggle the last twelve months that I forgot something, something integral to all of us trying to remain hopeful in the face of seemingly unsurmountable struggle.

And it’s this- I’ve been doing the autism mommy gig for fifteen years, and literally everything has come and gone in cycles.

Over the past decade-and-a-half we’ve dealt with sleep issues, eating issues, behavioral issues, leaving the house issues, riding in a car issues, and probably many more conflicts I’ve blocked out over the years. At least for me, when I was right in the middle of each situation my greatest fear was it would never be resolved- he would never eat enough or anything that wasn’t fried, we’d never be able to take him out of the house and not have it be a disaster.

Many nights I worried I’d never get a full night’s sleep again.

I have my priorities.

But the truth is, over time, with many different strategies, patience and often multiple opinions we were able to conquer these challenges one by one. Sometime things would not go away completely, but in every single case the situation was greatly improved. In my experience, and that of my friends, things tend to come and go in cycles.

And for sanity’s sake it’s imperative to remember that while you’re going through a difficult time.

I will tell you honestly that as we’ve conquered each challenge, eventually something else would rise up to take its place. I remember last summer feeling so positively about Justin and his life, keeping my fingers crossed that even though he’d entered puberty perhaps he would be spared the problems so many of my friends’ kids have gone through as they entered that phase of their lives.

Of course, in Justin’s case, this was not to be.

I will say this. When I finally reminded myself that every single time we’ve done battle the situation has at least improved, I began to relax more. I was able to clear my mind to focus on how best to attack the problem at hand, and I am confident this helped Justin.

I know it helped me.

Justin is not cured. I don’t know how he’ll be next month, tomorrow, or when he gets home from school today. There could be something challenging and new around the corner that I haven’t even thought of. None of us, whether our kids are autistic or not, know what comes next.

But if you’re struggling now, remember this. It could improve. Hell, whatever it is, it could stop. It’s good to focus on the problem but stress may just cloud your ability to help your child, so try as much as possible to remember that often in autism things come and go, that with the peaks of problems often come the valleys of relief.

Hang in there. Be good to yourself.

Have hope.

 

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September 24, 2018

Be Good to Yourself

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:33 am by autismmommytherapist

I am a glass half full girl (most of the time).

I try to adhere to that perspective when I can, but I admit I’m not always successful when one of my kids is suffering. This summer we had a dual whammy of a disheartening diagnosis for my son’s movement disorder, coupled with the knowledge that his affliction was from a medication we put him on years ago.

Not good times.

For two months I was just not my usual optimistic self. Along with this movement disorder came regression in several areas of his life, making him very difficult to deal with, plus a lack of appetite that made him drop twenty pounds over the course of the season, this from a kid who always wanted to eat. Most disturbing to me however was a notable absence of joy, limited laughs and smiles from a kid who worked so hard all these years to break through to his core, his generally happy self. I mourned that former self. And the guilt of thinking his father and I “did” this to him from a medication he’d taken was devastating.

Of course, if you read last week’s blog, we took him to an expert at UPenn in what he supposedly had, and he has tics/stereotopy instead, not from medication, possibly from puberty.

And possibly just because he’s severely autistic.

I’m still distraught that he has yet one more challenge to live with in his life. I thought severe autism and OCD were enough (apparently not!), but we have a course of treatment for him and have seen some improvement, so his father and I are guardedly optimistic. I am relieved this isn’t from a medication, and hopeful that although we won’t be able to eradicate the tics we can hopefully ameliorate their significance in his life.

We’ve already seen a few smiles break through in the last few weeks. They are glorious to behold.

I beat myself up throughout the entire summer, even though the medication we put him on years ago was absolutely necessary at the time. It helped him stay in his private school. It maintained peace and a healthy household. It made him less irritable, more able to contain his frustrations with life and not take them out on his family or teachers. I know we made the right decision all those years ago.

And yet, my brain kept saying to me we should have made a different choice, despite every family member, personnel from his school, and BCBA we’ve known since he was a toddler telling us differently.

Years ago I made a promise to myself that if we made a decision that ended up being a mistake, I wouldn’t beat myself up over it. Autism doesn’t come with a handbook; sometimes the options surrounding an issue are just different shades of terrible. Couple that with knowing we’re making all his choices for him for fifty years, and everyone is bound to make some mistakes.

And it is absolutely critical to your mental health, the welfare of your autistic child, and your other children that if you make the wrong choice, you forgive yourself.

I didn’t hold to my promise, the promise I’d remained faithful to for years. I’m back to it now, am able to think more clearly and focus on helping my boy, not on how I thought we’d inadvertently hurt him. So many of us who dwell in the world of severe disability are so hard on ourselves, second guessing every decision, regretting every wrong turn made.

And I’m telling you this as a fifteen year veteran of the “autism” life- you simply must stop.

Be kind to yourself. You can only do the best you can at the time in every situation you encounter. Remember that. Learn from your mistakes. Know that this life is sometimes impossible, and all you can do is try to give your child, and your family, the best life possible.

The most important thing is you have to be whole and healthy for your child.

And you can only do that if you’re gentle with yourself.

 

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September 21, 2018

I’m Back

Posted in Life's Little Moments, My Take on Autism tagged , , , at 8:54 am by autismmommytherapist

First of all readers, I apologize.

I always find it difficult to write in the summer, what with the driving to the twelve camps and the beach and the playdates, all of which I’m grateful my youngest can participate in. But quite honestly this summer was both so wonderful for Zach and so brutal for Justin that my heart wasn’t into writing about it.

I’m slowly working my way back.

Some things have changed since I last wrote in July, and some of have remained the same. We think we have a new diagnosis (and hopefully his last, a story for another time) of tics/stereotopy, a condition he’ll probably always have, but in theory can be ameliorated with treatment. We are hopefully going to get in to see one more doctor in November who actually sees adolescents (a miracle!) to confirm the diagnosis and treatment plan, and we will continue to work with his neurologist.

Over the last eleven months we’ve had consults with seven different doctors ranging from Israel to CHOP, Kennedy Krieger to UPenn. We’ve had literally seven different potential diagnoses.

It’s been confusing to say the least.

Of course, just like with autism, there’s no blood test to confirm any of this, so we’re going on instinct here and believe the last doctor we saw is right.

I hope he’s right.

I may know more in November. At this point we are just hoping for closure and a corroboration of the plan we received a few weeks ago.

And of course, we’re hoping to help our boy.

Quite honestly, this has been awful for him. I thought having severe autism and OCD were challenging enough, but apparently the universe had other plans for him, plans which have completely pissed me off. We’ve seen regression in some of his life skills, his speech, and his capacity for joy, which has always sustained him. I’m hoping with time and treatment we can at least bring some of these things back to him.

I just want back “our normal.”

I will be writing more in the weeks to come. On the bright side, my youngest loves middle school (who knew anyone could love middle school) and is doing fabulously. My anxiety this summer helped facilitate some weight loss (woohoo!) that hopefully my new calmer state will not undue. Justin has been calmer, and there are still glimpses of our happy boy.

Always have to be grateful for something.

And for anyone still reading this blog, I’m grateful for you too.

 

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January 9, 2012

Reprieve

Posted in My Take on Autism tagged , , , , , , , , , , , , , at 10:32 am by autismmommytherapist

SLAM!!!  I turn in time to see my eldest boy conclude what I know was the long arc of his hand originating behind his head, and ending with contact on what I fervently hope is not a now-broken DVD player. I rush to the living room to tell him not to slam things, which usually is enough to break him from his reverie and redirect him. This time however he just looks at me, with a remoteness in his eyes and an expression I can only describe as “devoid of Justin”. He attempts to do it again. I grab his arm and pull him to me for a hug, and I literally feel the tenseness in his body dissipate, and the essence of my boy return. He graces me with one of his heart-stopping smiles and returns to the DVD player, the episode seemingly forgotten. I return to my dishes in the kitchen, but I know it won’t be long before I hear that ill-begotten slap, and will abandon my scrubbing once again.

I just want this to stop.

Justin’s autism symptoms (or perhaps more accurately, his OCD symptoms), seem to ramp up considerably after either an antibiotic, or an illness, or both. He battled a fairly mild ear infection just a month ago, one which eventually required his usual dose of amoxicillin, and left him healed. It also left him with what I refer to as “extras”, including an increased need for order in his life, frequent head-shaking, and a new manifestation, the slam-dunk of a hand on any object in close proximity to my boy. These behaviors usually come and go in cycles, fortunately  with many long and peaceful interludes in-between. This time unfortunately his returning health has also brought back the long-forgotten urge to pinch, as well as awkward body movements, and I know it’s time once again to explore why this is occurring.

And trust me, we’ve been here many times before.

Jeff and I decided to take him to the ATN at Philadelphia CHOP (Autism Treatment Network though Autism Speaks), in part because he hadn’t had a full evaluation done in a few years, and in part because I felt they’d be the best practitioners to help us decide which specialist to approach next. For anyone considering using any of the ATNs in their area I’ll share that I thought it was a very comprehensive evaluation, with the best part by far being our experience with the developmental pediatrician.

Any time a clinician associated with autism examines my son, offers me excellent advice, and exudes any amount of warmth whatsoever, I am hooked.

After my husband took my exhausted son out to the car so I could conduct the rest of our family history in peace (after seven years dealing with autism, it’s become rather lengthy), I felt like I could really concentrate on what she was saying. She told me straight out after observing him that his new movements could be indicative of a seizure disorder, and although the chances were rare, we’d need to investigate further. We discussed the fact that he might just be reacting to the Risperdal, the medication we put him on a year-and-a-half ago to help eradicate the last of his aggressive behaviors. Dr. B also said that all of these aberrant incidences, the return of the pinching, the head-swinging, and the unpredictable slams, could simply be a new manifestation of his autism.

We’ve been there before too.

Our knowledgeable developmental pediatrician informed me that a pediatric neurologist would be our next stop, and visits would probably include at the very least an MRI and an EEG, none of which have been conducted on my boy before. She must have seen me grimace because she offered me a heartfelt “I know, both are going to be extremely difficult for him”, an offering of empathy that made me want to hug her.

I restrained myself.

I also took away from our conversation that I needed a very specific type of neuro ped, one well-versed in seizure disorders, movement disorders, and tics. Dr. B gave me a list of names (all of whom would decline taking Justin on, but at least I left the office with a plan). Through my husband’s supernatural research skills (literally, the man can find ANYTHING) we’ve since come up with a practitioner who seems to fit the bill, one who even had a cancellation for ten days after our initial call.

I’m sure many of you will agree that’s better than hitting the lottery.

Within a week’s time we’ll be gracing the doors of this new practice, and unless it’s an absolutely horrible experience, I’m sure we’ll return for any number of fun tests and consults too. They will be difficult to watch. They will be much tougher, for a myriad of reasons, for Justin to endure. But endure he will, because he is such a good boy, and we’ll get through all of it and hopefully come away with some answers.

I recall, as I closed up my purse and gathered a half-dozen toys scattered around the tiny CHOP exam room to make my return to our car, that the feeling accompanying my relief for having a plan was rage. Rage that perhaps something invisible to the naked eye incites these symptoms in my son. Rage that at times he’ll stop in the middle of an episode, his face will crumple, and he’ll sob his heart out for no reason. Rage that he and our family have come so far, and still have to endure these periodic regressions.

Rage that my boy still suffers.

And yet, infused with the rage remains that thin filament of hope, the thread that has been with me since the beginning, and stubbornly refuses to be broken. The research has come so far in the past few years, physicians are so much better informed, that perhaps for Justin, we will discover some relief.

And along with a lot of baggage, I unwind that thread with me as I head back to my car, and him.