October 11, 2018
The Best I Can
I see you, across the fairly empty waiting room at CHOP. You are with your adult daughter in a wheelchair, and she is parked next to you, silent and solemn. I watch you brush a tendril of hair out of her face and sit back in your own chair, slightly slouched over as you wait. I am close enough to see those telltale purple smudges under your eyes, your sleepless badges that so many of us with severely disabled children wear every day. Our eyes don’t cross paths, and soon your daughter is called to her appointment. You wearily stand and wheel her over to the double doors that beckon her. In a few moments, you are both gone.
You looked so, so tired. I get it. I wish I’d said something encouraging to you before you left.
This summer I took Justin to the beach one afternoon, a rather risky venture given his movement disorder and how difficult he’d been since the spring, but we live minutes from the shore and I didn’t want him to miss out on something he will at least participate in for an hour or so. He was content to run back and forth in the shallow surf a few times, was happy playing with the few toys I could schlep to the beach. Just as I was thinking of calling it a victory and a day he got up with his favorite toy in hand, and made a mad dash for the shoreline.
I know that favorite toy, the irreplaceable ancient one, is in serious danger. I heave my middle-aged body out of my beach chair and run as fast as I can toward my son, able to grab the toy in mid-arc from his outstretched hand, hoping he wouldn’t respond with a pinch in his displeasure. He let me save his toy and splashed into the water up to his knees with me close behind. Another victory.
I take them where I can get them.
A minute later he backs up out of the water, still content to let the waves lap over his toes. I breathe a sigh of relief, and realize a woman is standing next to me, smiling.
I take my eyes from Justin for a moment and smile back. I can’t count how many times we’ve been out in the community and people have come up to me to ask questions about Justin. I’d love to tell you that I’m up for it, but today (and for the last year) I’ve been really, really tired, and I’m just not feeling the autism ambassador thing.
And for once, there’s no need for me to educate.
She introduces herself and says she’s the mom of a severely autistic teenager, and a special education teacher as well. She tells me how handsome Justin is, and how great it is that I can take him to the beach. She says she doesn’t want to take too much of my time, but she wanted to tell me I was doing a great job with him, and to be proud.
To tell you the truth, as we’ve been desperately trying to help Justin I haven’t felt proud of my parenting skills for the better part of a year as I’ve watched him suffer. Her words loosen a tension in my chest, make me acknowledge what I’m trying to do, what I have been able to do for him.
I needed to hear those words, and I needed to hear them from a stranger. I feel better as I watch Justin dance once more with the waves.
I feel the return of the tendrils of hope.
I thank the woman profusely and tell her how much I needed to hear those words from someone outside of our circle, an impartial observer. I tell her how he’s struggled the past year and that I hope we’re closing in on some treatments to help him. I thank her again for making the effort.
I breathe.
Families raising severely disabled children face so much difficulty on a daily basis. Our children often exhibit aggression, insomnia, eating disorders, toileting issues, self-injurious behavior, and so many other challenges. For our family personally Justin’s behaviors come and go in cycles, and the past year has been particularly daunting. There have been many days recently where literally everything from getting him out of bed in the morning to getting him down at night has been exceedingly difficult. Some days, I didn’t know how we’d make it through to nightfall without losing our sanity. I’d beat myself up over his regressions, feeling like I wasn’t doing enough for him to help end his suffering. I know I need to let that guilt go, as it isn’t helping me, and more importantly, it’s not helping him.
The truth is, I was doing the best I could. We all are.
And sometimes that has to be enough.
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October 1, 2018
Cycles
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
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
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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July 31, 2018
Patience
Patience is a virtue I do not have in spades.
I say this and laugh, because instead of making list-oriented New Year’s Resolutions this year, I simply asked for patience, happiness and peace. Last year (unfortunately) like this year was very challenging, and really, I was just going for baseline.
It turns out I’m a work in progress.
This summer I’ve seen a lot of ups and downs with our boy. At this point, to tell you the truth, we’re not even sure what he has anymore. We have a consult with his neurologist next week, there may be answers,, there may not. Justin seems to make progress, then slips again. It is beyond frustrating not knowing for sure what is going on not because I need a label, but because I don’t know how to treat it.
Still, there are some things I am immensely grateful for.
His school has been incredibly patient with all his changes, and once again I am beyond thankful that we made the decision to put him in a private placement all those years ago. His school truly is his second home. We are lucky.
To my immense relief we are still able to take him places, places he’s loved since we moved here when he was a toddler. I’ve been worried we’d lose that ability to take him out, which has meant so much to him and to me over the years.
Finally, we’ve seen some of his intrinsic joy return. This aspect of whatever he has has been the most difficult part for me. My boy, despite severe autism and OCD and this new challenge, has always been happy in his core. To see glimpses and periods where this child has returned has meant, well, everything.
Psychologically I know whatever this new challenge is his progress will not be linear. I don’t honestly know where we’ll be tomorrow, next week, or a few months from now. I guess the truth is none of us knows this, but it is particularly difficult for me because this is my child’s life, the one we’ve sweat blood and tears for for fifteen years to make it good for him.
I, not so simply, have to wait.
And I sincerely hope the universe grants me patience.
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July 18, 2018
I Can Never Die
I can never die.
Now listen, I know the reality is that eventually I will, despite the running and the elliptical machine I love and the yoga and the 32 ounces of water I (sometimes) dutifully consume daily. At some point, my heart will cease to beat, those aged neurons will stop firing in my brain, and it will no longer matter how much broccoli I ate that week (probably a lot). Death comes to all of us eventually, and while I’m pushing for that centenarian age that many of my relatives have come close to achieving, intellectually I know it will come.
Emotionally I’m not so cool with it. You see, I have a severely disabled son.
He needs me until the last moment his tender heart ceases to beat.
I would be lying to you if I told you I thought about this all the time. I have tried to relegate this reality to a back shelf in my brain, knowing that if I thought about it all the time I’d be permanently ensconced in the fetal position, which won’t get the laundry done. There’s no point in torturing myself, and quite honestly I can go days before his sobering reality crosses my mind.
With autism there are plenty of other things to occupy my brain.
At some point down the road we will have to make some big decisions regarding Justin’s adult life. Eventually my husband and I will be too decrepit to handle my someday close-to-six-foot son and his needs, and since his little brother has stated for years he’ll visit his sibling but doesn’t want to take care of him (he gets how much work it is) we will be looking for a residential placement for him. I have ambivalent feelings about this impending decision. On the one hand, since I know it’s inevitable that he will need to sleep somewhere other than his under-the-sea room I have a certain acceptance level about his relocation. I could even tell myself that in theory, (although I wonder about this generation) most adults usually leave the nest, so why should he be any different?
The problem with that line of thinking is that while his chronological age may be in his thirties, I can bet you some really good chocolate that he’ll still like Baby Einstein videos and want his caretakers to read him an Eric Carle book before he goes to bed, which I’m not entirely sure will fly with his staff.
In his soul, he will remain forever young.
On the other hand, I worry about the possibility of abuse, neglect, and perhaps him not having someone in his daily life just to love him, which since he’ll be without me for a good forty years simply breaks my already fragile heart.
Honestly, I can’t begin to fathom how it will work without my being with him, how someone will know inherently what he needs even when he can’t express it on his iPad or with his limited words.
How will dozens of caretakers over the years know that he’s not being resistant to putting on his shoes, he simply needs the left one on first?
Who will cajole him with puzzles, dancing, and sometimes a simple good old-fashioned hug?
Who will understand his word approximation for “juice,” or understand he’s putting his dirty hands on the refrigerator not to make a mess but just to get more of the lettuce his mom was so proud he ate?
Who will navigate the myriad of medicines and supplements he takes, taking the time to tweak and adjust as he ages?
Who will comfort him when he gets sick?
Who will foster his affectionate nature when he craves the contact that centers his soul?
Who will love him when I die?
I’ve been told to have faith, to keep hope alive that dozens and dozens of caretakers whose grandparents have just been born will treat my boy with the kindness he deserves. I know there are good group homes with men in their seventies, eighties and beyond who’ve carved out a life without their families, some who’ve even gained a measure of independence.
I believe there are some autistic adults who lead good, full lives.
All of this circles around in my brain when I allow it to contemplate his future. I know there are success stories out there, and I comfort myself with those.
But still, it seems impossible that someday I won’t be there for him, to guide him, to make life choices for him, to love him even when he is difficult.
I need to live to 132, just in case he inherited the genes from my mom’s side of the family.
I can never leave him.
I have to leave him.
The situation is impossible.
I can never die.
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July 3, 2018
Dear Universe
Dear Universe,
Okay. You win.
Here’s the thing Universe. Whether you acknowledge it or not it’s time to cut this family a break. We have remained collectively upbeat this past twelve months despite some really nasty life changes I won’t go into here, plus the chaos of our house almost burning down and the four months of repairs that ensued.
We have been really, really mature.
I probably brought this on us by allowing myself to breathe a sigh of relief this fall when things were looking up. You see, I relaxed my vigilance with autism and its never-ending surprises, and that’s when catatonia came to call.
You got me universe. With the onset of puberty I was gearing up for seizures and renewed aggression. I’d never even heard of autism-related catatonia.
Again. You win.
But here’s the thing universe. This family has weathered Justin’s aggression, insomnia, refusal to eat, eating too much, extreme OCD, refusal to potty train, and probably a host of other issues my very tired brain has blocked out to survive. Each time, Jeff and I sucked it up and went at each issue with a many-pronged approach, employing behavioral techniques, using medicine when necessary and being vigilant in our efforts to help our boy. The truth is universe, it gets more difficult for us every time because we’re older, which doesn’t bode well for us since we’re looking at at least another decade of full-time care of our son, and probably much longer than that.
I guess what I’m saying is I’m reaching my “sucking it up limit.”
It’s been eight months since Justin’s symptoms started, and the irony of it all is we’ve consulted four different practitioners, and there have been five different diagnoses trotted out for him (yes, I said five). Of course, just to keep things fun, these five different diagnoses all have completely different treatments, so I anticipate if things don’t improve for Justin, trying everything out could take until he’s twenty-five.
Okay, maybe another year, but it will FEEL like he’s twenty-five.
It’s been a long eight months, universe. The thing is this thing he has, whatever it is, is a game changer. I’m not sure he won’t get kicked out of camp because of it. I worry no twenty-one plus program will take him with it. If his symptoms progress I worry about his residential care, because at some point dear universe, Jeff and I will need someone to take care of us, and I can tell you right now that someone won’t be our eldest boy.
In other words universe, this is a big freakin’ deal.
We’re making some changes with him medically, and I’ve been told both that the symptoms can go away or at least go into remission, so we do have hope. We’re doing every suggestion that’s been made to us (like we always do), so universe, I’m asking you to come to the table and do your part.
Help my son. It just can’t be that hard.
I hate whatever the hell it is that he has. When he’s in an episode, he is robbed of all joy in his life. When he’s not in an episode, he is the happiest, loveliest child ever.
Bring back that child.
I want him happy, healthy and whole. I want him to be able to enjoy the summer, this season that he loves so much.
I want to see him smile.
Pony it up universe.
I’m waiting.
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June 17, 2018
A Father’s Day Message of Expectations
I am Jeff McCafferty, Kim’s husband, with a special Father’s Day edition of the blog. I hope you find the post to your liking and that you share it with those for whom it will resonate.
“Fathers don’t take it well.”
That is what our pediatrician told my wife, Kim, after she asked him why he chose then to tell her, without me present, our son Justin was likely autistic. After all, both of us had taken Justin to the doctor a few weeks earlier and he gave no reason for concern.
Our journey in trying to help Justin was delayed because our doctor was afraid to tell me. What experiences had he seen that made him come to the conclusion I, and fathers in general, would “not take it well?”
An autism diagnosis surely elicits an array of emotions from fathers and mothers alike. At the time, I wondered a lot about what it was that made fathers, in particular, in this doctor’s experience, “not take it well.”
While there may be several explanations, the one that seemed the most plausible to me was that fathers are perhaps more likely to place certain expectations on who their children would become and what they would do in their lives. Expectations can be dangerous things especially if they do not come to pass as planned.
On that fateful day, once Kim shared with me the doctor’s concerns, I did not get overly upset and I did not blame myself. At the time, I did not quite understand the implications of autism and I did not appreciate the genetic connections that would likely lead to me being a major contributor in the diagnosis; as looking at Justin and me together, you can clearly see he is swimming deep in my gene pool.
When our other son, Zachary, started to go down the same path as Justin, my reaction was much different. While Justin had issues almost from the day he was born, Zachary was developing well. He was the life of the party. He could light up a room. I saw the world as his oyster. I had a chance to build those expectations.
Then he got sick at about 18 months. The light that sparkled in his eyes went dark, and the son we had known was gone. As his conditioned worsened, I was “no taking it well.” But, understandably, neither was Kim. This happy and healthy child was quickly transforming to a life of pain and struggle and it was beyond heartbreaking.
Moreover, I had allowed myself to visualize who he would become and was selfishly thinking how I would take him to ballgames, play catch, and do all of those things we take for granted that kids do with their dads. Based on our experience with Justin to that point, I could see all of that slipping through my fingers and I was devastated.
Several months after his ailment, through a variety of interventions, Zach started to improve, and so did our hopes for him and us.
Zach and I have been to baseball games, he has played sports, and we do “dad things” that years ago I thought would never be possible. But Kim and I know well enough that he is the exception, not the rule.
Looking back with a more informed lens, I learned something; an autism or other type of serious diagnosis does not mean in all cases that dads cannot do “dad things” with their kids. How it evolves may be different than expected, but I have seen many fathers with autistic kids, some fairly severe, who are extremely involved and active with them.
Even so, the life of a family with an autistic child, or any special needs child, can often be impossible and incredibly daunting. We all want our children to be happy, healthy, and safe now and through their adult lives. In our days within the confines of the autism community, we have seen many families, whose children are impacted, who struggle to make that happen.
Those basic needs, I surmise, are the baseline expectations. At least for me and Kim they are.
What that means for each child is somewhat different. Barring new medical breakthroughs, Justin is likely going to require daily lifetime assistance. We revel in the simple things that make him happy; a favorite story, his DVDs, our nighttime rituals. When those are diminished because he is physically struggling we are not only concerned about his current well-being, but also his future when we may not be able to take care of him. We know that if it were up to him he would like to do the same things in his 80s that he can do now and spend his final days dancing in his extremely old mother’s arms.
For Zachary, while his happiness, health, and safety are also of the utmost importance to us, he has a world of options available to him and will not require the assistance that Justin needs moving forward. For him, our goal is to protect him as best we can as a pre-teen while letting him explore who he is and what he wants to be.
On this Father’s Day, I would like to salute the dads who every day fight the good fight to make the lives of their children and other children, on the spectrum, the best they could possibly be.
And I can tell you, I have met some amazing dads over the years. Some with autistic children have started charities to raise awareness, provide social opportunities, Santa visits, respite relief, and housing. Others are not as much in the spotlight but are grinding away every day in their daily lives to ensure that their families have the resources to pay for all of the services and everyday necessities required to keep them healthy and safe. Many are directly and actively engaged in their children’s daily activities, and it is a wonderful thing to behold.
I have also been and will forever be touched by the generosity of fathers without special needs kids who “get it” and give their time in both formal and informal ways to help autistic children in our community and across the nation.
We are also blessed to have some amazing fathers in our lives who I would like to thank, including my father, the boys’ uncles and great uncles, and so many other friends and family who are dads (and not dads) who understand, and offer unconditional compassion and support. For any father, or mother, reading this, my wish for you is that you are equally blessed.
I probably will never fully understand why our pediatrician feared telling me about Justin’s autism all those years ago. In the end, it really does not matter. What does matter is that our children get the support they need to do the best they can. And all you fathers out there can be instrumental in making that happen. They should expect nothing less from us.
Happy Father’s Day!!
June 11, 2018
The Shift
It’s June, time for another round of “endings.”
I know most people view December as “the big cahuna.” This is the time where New Years resolutions are made (and subsequently broken), and people look back on the year that has just passed and figure out what they can do to make the next year a better one. I have to admit the optimism I always have for the impending year usually outweighs my sadness at leaving the current one behind, the knowing that I’m twelve months closer to the “great beyond” no matter how much kale I consume.
I’ll tell you a secret. Kale won’t help my longevity. I don’t eat it very much.
The June endings are of course tempered by the knowledge of an imminent summer, and I am a summer girl. One of the many glories of being a teacher was having those summers off (now I work harder in the summer schlepping my kids everywhere than I do when I actually work during the school year), and I reveled in that time to recharge, kick back and relax. When I taught there was (usually) some sadness as I said goodbye to my students, particularly when I taught sixth grade and knew they would be scattering all over Fairfax County. I’ve never been really good at goodbyes, and some years I admit to some collective tears being shed amongst me and my students (okay, just the girls) at our impending separation. Still, I knew there would always be another year of connections to be made, and I knew “my kids” were moving on which was a good thing.
Did I mention also how much I love summer?
Zach and I have a big ending coming up next week as he moves on to middle school. Over the past few weeks I’ve chatted with other moms saying goodbye to Midstreams as their last child moves on, and we are all having a hard time with it (one mom and I decided we’d probably have to be escorted out of the school after graduation). Since I’m not the “transition queen” I will probably be a mess next Wednesday, with my husband offering me tissues and not completely getting what all the fuss is about (but honey, it’s about all the friends I made while volunteering too!), but I will get through it.
As I mentioned in my last post, it’s time to man up and be brave.
The truth is, however ambivalent I’ll be at leaving the Midstreams cocoon next week there are threads of joy woven throughout this sadness, my sense of loss tempered by the knowledge that my boy is growing up well, that for him every ending is just a new beginning. My youngest has done well at school, has friends, has participated in clubs and activities that held meaning for him. My fingers are crossed that his next seven years will entail more of the same, and I have every hope he’ll weather any hurdles, will continue to stretch himself both academically and socially. The world is literally that kid’s Jersey shore oyster.
And I can tell you all now I want exactly the same for my severely disabled son too.
My son Justin is fifteen years old, has severe autism, OCD, and just recently landed himself a diagnosis of autism-related catatonia, which quite honestly has been a game-changer for a family who thought (hah!) we had the disability thing somewhat under control. He is in a wonderful school placement, one I will literally do anything (yes I mean it) to keep him in for the next few years until he graduates at twenty-one. Hopefully his big ending won’t occur for the next six years, because truthfully his mama needs that much time to deal with it, and I’m hoping to have a plan in place for him that will somewhat echo the previous fourteen years (my nickname for his school is “Disney,” they’re just that good).
What happens after twenty-one you might ask? Well, I’ll tell you readers, that is literally the million dollar question.
Justin’s school actually has an after twenty-one program housed on their campus, set in a building Justin’s been going to for years to work out in and learn life skills. My boy loves his routines, and I know in my heart we have a greater chance of him making the transition from school to adult program if he is familiar with his surroundings. I’m envisioning the possibility he might try to “escape” to his old haunting grounds if he’s so lucky to be accepted, but in the end Justin is a rule follower, and I know he’ll eventually get that that part of his life is over, that a new chapter has begun. There are many factors that will go into deciding whether he goes there- what kind of budget I’ll get from the DDD, whether or not there are any openings, how Justin is behaving at that time in his life. Nothing in life is guaranteed, but I know without a doubt that he would love their program, that it is his best chance at having an adult life outside of our home, which I deeply wish for him.
And being totally honest, I wish it for me as well.
Years ago I made a mental shift regarding Justin. I stopped wanting the trappings of what I considered a “normal life” for him, and made the adjustment to wishing he’d simply lead the best life to suit his needs. I let go of wanting the things I expect will take place in Zachary’s life- college, a job (yes please!), his wedding (can’t wait I will be a nice MIL), and hopefully a lovely social network for my boy. Instead I focused on getting Justin what he actually needs and wants in his life, which are not any of the things his brother will want for himself. That shift, that realization that Justin could lead a happy life completely different from that of his sibling profoundly changed my outlook on his life.
It made Justin’s endings and beginnings seem as potentially bright as his brother’s.
I can’t wait to see what will enfold for both of them. I know until my dying breath I’ll be plotting and planning for Justin ( I once mentioned something about his “eighty years on earth” in an IEP meeting and was met with a few blank stares),and I hope I can craft as fulfilling a life for him as the life my youngest will undoubtedly craft for himself.
So here’s to endings, and the burgeoning possibilities they bring with them.
And here’s to new beginnings- may they be bright for all our children as well.
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June 4, 2018
Tribute to Midstreams Elementary School
To the Midstreams Elementary Staff,
It’s over. My son is graduating from the cocoon of his wonderful elementary school, and it’s time for Mommy to be mature about it.
Don’t hold your breath.
I knew this day would come. For the past few years I’ve breathed sighs of relief at every school event, reveling in the fact that this wasn’t the last one, that we had a year or years left of field day or book fair or holiday shop. Today I don my bright blue field day shirt for the last time and head to the fields, cognizant of the fact that this is the first of many “lasts” in the weeks to come.
Yes, I’ve already turned to chocolate.
I can still remember (which is quite a miracle really) a day five years ago when his principal kindly granted him a special tour of the school because we had to miss the “new arrivals night,” my boy both anxious and excited to leave his pre-school and start a new adventure. Over the next five years I’ve watched my son thrive in this academic yet fun environment, watched him stretch himself past his safety zone with the encouragement of his teachers.
By the way, I’m a former educator and I loved every last one of them. Yes, people, that means something.
Zach has a severely autistic older brother who happens to also have OCD and catatonia (the disability tri-fecta!), and I would be lying if I didn’t reveal that I spend a great deal of time worrying about him and his needs. The truth is having our youngest in a wonderful school placement has permitted my husband and I to spend many hours contriving things so Justin will be happy, as I am a firm believer that every family is only as happy as their least happy child.
Trust me, after fifteen years of dealing with autism, this is “truth.”
The glory of having his sibling in an environment where his teachers not only “get” him but love him is indescribable. For five years I have never once worried that any bump in the road would be addressed by both his teachers and his principal, that my son would be pushed to be his personal best, and equally important, that he’d have fun doing it.
This has allowed me not only time to focus on Justin’s needs, but to keep up with my tv shows. I have my priorities.
For half a decade I have witnessed a clan of teachers who listened to my boy, encouraged him when necessary, and perhaps my favorite, facilitated his burgeoning independence. They have inspired him to love learning (I know this because he often quoted all of you at home), to take responsibility for his actions, and to remind him to raise his hand when he has an idea (a continual work in progress). I have had the joy of knowing that his principal and former assistant principals would always be approachable if any issue arose, have been confident that a solution to any problem would be found.
Clearly, I am a fan of this school.
Sometimes, it takes a little bit more than a village, and my son has been fortunate to find a community within which he has thrived. My husband and I can’t thank all of you enough, from the custodian to every para and every specialist, to two amazing secretaries, to all his teachers and ancillary staff as well as his principal and assistant principals, for your care of our boy. For five years (once he’s awake, still a struggle, wondering how that will go next year) every single day he’s been excited to go to school, and I deeply thank all of you for fostering that love of learning within him.
We will be back to visit. Both Zach and I will need our fix.
From the bottom of my heart, thank you for taking care of my son.
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