December 14, 2018
The Future
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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December 4, 2018
Not Home for the Holidays
The holiday season is upon us, and as usual I try to take time (usually a few seconds at this time of year!) to reflect on how my two boys with autism are doing, and what steps I can take to make the holidays go more smoothly than in years past. My severely autistic boy is fifteen, my youngest son on the milder end of the spectrum is eleven. Quite frankly, we have had some Thanksgivings and Christmases in the past that brought me to my knees (while fervently wishing the eggnog had a little something extra in it).
I am happy to say that as of this past Thanksgiving, we have left those days behind.
I would love to tell you that my brilliant parenting brought on this eighth wonder of the world, and I do like to think that a little strategic planning helped. I have to share with you however that the biggest factor in my boys’ (and thus their parents’) collective happiness this past holiday is frankly due to maturity. My boys, especially my severely affected one, have simply grown up, and in the process lost a great deal of their sensory issues, which I feel greatly contributed to some of the fiascos of “days of yore.”
Trust me, there were some “good times.”
Looking back at past holidays there were definitely some tips I got from other parents and autism websites that worked for my family, and I’d like to share them with you today.
1) Prepare, prepare and overprepare. If you are travelling for the holidays bring every toy, DVD, and book you can possibly cram in your car or on public transportation to bring as much of “home” as you can wherever you’re going. Sometimes just seeing a familiar toy calmed my son down over the years. Bringing the favorite “du jour” is key.
2) Find out what time your hosts are serving, and initially keep visits short. There have been years we’ve arrived at my family’s or my husband’s family’s abode half an hour before we ate, and left before dessert. It wasn’t ideal but we were able to keep my son reasonably happy, get out for the holiday, and even have time for an appetizer or too. Over the years we’ve been able to expand our visits for up to three hours, but it took time. Try to have patience.
3) Educate your hosts about your child’s particular take on autism. As much as you can, have conversations with the people you’ll be spending time with about your child before the big day- how they may act, why they would be acting that way, what they can do to help. Often if people feel they can contribute in some way they are sometimes more receptive to our kids’ quirks. If not, at least they were prepared for what could happen.
4) Keep your expectations reasonable. I know this is supposed to be a magical time of year, but often it’s very stressful for children on the autism spectrum. If your child seems rude when being presented a coloring book from Great-Aunt Janice rather then something that lights up and spins, it’s okay. Not every moment will be perfect, the important part is to have some positive moments and have every outing improve over the last one.
5) If appropriate, create a social story about the event for your child. While these stories didn’t seem to help much with my son, I have friends who swear by them. Also, sometimes having a schedule, even one that diverts from the norm, can be incredibly soothing to an autistic child. I have friends who have created schedules where major moments of the day are velcroed so that their child can rip them off and see how close they are to going home. It’s worth a try!
6) Finally, even if things go south, there were probably a few good moments you can build on for next time, and you probably learned a thing or two about what to do differently. Every year I’ve been able to tweak my holiday prep for the best outcome, and after fifteen years I can finally say we’ve come to a place where I truly enjoy the holidays with our extended family, and most importantly, with my sons.
Wishing you the best this holiday season, hang in there and good luck!
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November 28, 2018
Go with Your Gut
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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November 19, 2018
Grateful
Every year I try and write a “Thanksgiving post,” both in honor of a holiday I love and in an attempt to remind me of my annual New Year’s Resolution to think of three things I’m grateful for throughout each day.
Most years I forget to do this by Martin Luther King Day.
I will say that this year I was a little better at it than most which is surprising, because the last eighteen months have been challenging to say the least chez McCafferty, and we are literally just starting to breathe a collective sigh of relief that things are finally starting to improve. I pretty much only got to my resolution at night before I’d go to sleep (which might be part of the reason this over-fifty gal is finally sleeping better), but better late than never I always say. I actually managed to write down some of the things I was particularly grateful for this past year, and I’d like to share my top ten with you.
I would also like to share with you that I’m actually looking forward to Thursday, and there have been many years in the past that taking Justin to our family’s Thanksgiving was pure work, with very little enjoyment whatsoever. Over the years it has gotten much easier to spend the holiday with him, and I wish I had known this would happen years ago when we struggled so much just to get him through the meal. If you are in this place currently with your child please know everyone in our community has been there at the holidays, and my profound wish for you is that this is the year things begin to ease up for you and your family. Remember, even if it’s difficult, there’s usually wine and make sure you get dessert to go!
Here are my top ten reasons for gratitude this Thanksgiving. My wish is that you and yours have a wonderful holiday as well!
1) After an exhausting year, we believe Justin finally has a correct diagnosis and we’ve been able to help him considerably.
2) I am fortunate to have wonderful friends both in and outside of the autism community who remain my sounding board and my solace when things get tough (and share my laughter when we can!).
3) My youngest not only loves middle school (who loves middle school?!) but is thriving due in large part to the consummate professionals instructing him (who put up with me too!).
4) I am grateful for my husband, who does so much for everyone in our family and still makes me laugh after twenty-seven years.
5) Beyond grateful for the return of Justin’s smile, his affectionate nature, and his belly laugh which makes the world a better place.
6) I am thankful for how hard Zach works every day to reach his goals.
7) I am so appreciative of the level of excellence Justin receives every single day in his school placement, and the level of compassion all of the staff show our boy.
8) Grateful for my birth family and the family I married into for “getting it” as much as they can, and for their constant support.
9) I am incredibly thankful for my readers, who leave the most compassionate and inspiring comments and who lift me up every week.
10) Grateful, despite the challenges, for my beautiful life.
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November 13, 2018
Keeping an Open Mind
I remember it like yesterday. An eighteen-month-old Justin and I were sitting having lunch in a restaurant in the mall, and a lovely elderly lady approached us to say hi to him. Despite lots of attempts and funny faces my son remained unmoved by her antics, and I apologetically blamed it on hunger and his need to eat. “Is he talking yet?” she asked, and as I swallowed past the lump in my throat I replied “no, not yet.” She smiled at me, said “soon,” waved again at Justin and walked away.
I’m not claiming I can foretell the future (okay, maybe a little), but I knew in that moment that “not yet” was a lie.
Fourteen years later, my prediction was correct.
Maybe you’re reading this and your son or daughter is two and has just been diagnosed, and you despair of your child ever talking, of saying “mom” or “I love you,” words and phrases you took for granted when your little one was still in the womb. Trust me, two is still too little to know if they will grace you with words. Autistic children as old as eight and even older have been known to start speaking at a late age.
Talking is much more convenient than any other type of communication. If they can speak, they will.
When Justin was little I was hellbent that he would speak. Before he went to school we ran trials throughout the day, me urging him on for any syllable he could muster, and rewarding him with whatever his favorite thing was at the time. I had read a study where sign language supposedly encouraged speech more than other forms of communication, and I remember dutifully practicing those signs with my boy dozens of times a day in the hopes that this method would catch on. It didn’t. In addition to apraxia he also has fine motor control issues.
I clung to that study. And if I hadn’t finally opened my mind to Justin’s Early Intervention providers who assured me that sign language was not the way to go with Justin and we should try PECS, a picture-oriented communication board, I would have been doing my son a grave disservice.
It turns out that what my son lacks in fine motor control he makes up for in technological know-how. He graduated from PECS to an iPad and the Proloquo to go program, learning to read and to type simple phrases. He is the master of any Google search, and has learned to communicate any needs we can’t figure out just by him knowing how to use technology.
I’d swear he’s better at it than I am, but that’s not saying much.
The truth is, his method of communicating was just one of a number of issues I had to learn to open my mind about. When he was two I moved our family back to New Jersey for better Early Intervention services and school programs, and I was determined we’d find a great public school district where my bright boy could potentially mainstream part of the day. Inclusion and receiving a public education where this would be possible was my priority- my boy would have access to his neurotypical peers.
In the end, his need for a private autism school to address his educational and behavioral needs far superseded his mingling with NT peers. Fortunately, I was able to let that dream go and be intensely grateful for the fact that our district agreed, that we found the appropriate school, and miraculously they had an opening.
For eight years this school has been his second home. And he never would have enrolled there if I hadn’t kept an open mind.
If you’re just starting out on the autism path with your child there will be so many choices to make in the next few years. You may have to make decisions about which program your child should enter in your school district, where they’ll attend school, what is the best method for them to communicate. Don’t be afraid to garner multiple opinions, and if you feel something isn’t working, insist that therapists and school personnel try something else.
You may encounter resistance. Keep on pushing. Never give up.
You will make mistakes- we all do. Sometimes figuring out what’s best can be a Herculean task for our kids- often there’s no clear path to a solution for whatever challenges they’re facing. Be strong. Reach out to other autism parents, professionals, and do your research.
And remember to keep an open mind.
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October 29, 2018
Full Circle
He stands alone in a corner of the dining room, having triumphantly liberated a toy from the garage I haven’t seen him play with in years. It’s a big material-covered cube replete with favorite nursery rhymes, and every side has something three dimensional to grab onto. I hear the sound of the spider string pulling and the familiar notes of “Itsy-Bitsy Spider” roll through the house, followed by something far more important, my son’s laugh. Not a chuckle. His big, loud belly laugh, a cacophony of sound I haven’t heard from him in over a year.
It is beautiful to hear.
Justin has gone through so much these past twelve months, from spending hours a day frozen, to having his sleeping and eating impaired, to a return of the unwanted aggression that reared its ugly head for a while. I will be honest with all of you- this past year has been horrible. It’s not only that I had to watch my child suffer. I had to witness him regress in many areas of conquered skills, and watch him lose any interest in his few activities outside of our home. I saw his personality diminish, observed his usual affectionate persona disappear.
Frankly, it’s been hell.
We are not totally out of the woods yet. He still has some aspects of the movement disorder we’ve come to believe is tics, but he is vastly improved, able enjoy his favorite pastimes again, the computer, his DVD player, his toys. We’re finally getting to see some smiles again, and once in a while a laugh, which is restorative to my soul. I won’t lie to all of you though- he is different. Not as playful as he once was, not as present, not as engaged in school as he used to be.
I know Kim. Baby steps.
Believe me, I am so grateful the renewed aggression has all but disappeared. His sleeping is back on track. He’s now eating at least two good meals a day, and regained some of the weight he lost distressingly quickly this summer. He makes more eye contact now like he used to, and his words are slowly returning, albeit without the clarity they once had. He’s doing better, but that exuberant joy has yet to be seen.
And I will tell all of you, I want it back.
Justin, as wonderful as he is, has been very challenging over the past fifteen years. Even at the worst points- insomnia, refusal to eat, refusal to potty train- he’s still had that “spark,” that unique element that made him Justin. It seems to be dormant now except in brief flashes, flashes which seem to be returning in more frequency every week. Trust me, this is not an aspect of his personality that a casual observer would notice. But to those of us who teach him and love him, it’s evident.
And I’m hoping that this trend we’re seeing will bring us back full circle to our ebullient boy.
Please keep your fingers crossed for him too.
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October 24, 2018
Celebrate the Small Stuff
He hesitates at the threshold of the tub, looking concerned that the water is spraying down rather than collected for his bath at the bottom. He vocalizes loudly and frequently, and it’s difficult to tell if he’s excited or dismayed that he won’t be taking a bath this evening. I gently encourage him by putting pressure on the small of his back and telling him it’s alright to get in, and after a slight pause, he does.
We’ve tried this numerous times over the years to no avail, but finally, my fifteen-year-old autistic son is taking a shower.
This might not seem like such a momentous occasion, but it is. I’m always thinking about down the road for Justin, not only how we can facilitate some semblance of independence, but also how we can make his care simpler for the dozens of caretakers who will get him from adulthood to death. It takes a lot of patience to care for our boy, and anything I can do now which will make that task easier for others down the road is a priority for me.
One more skill down, just about a thousand left to go.
If someone had told me fifteen years ago when I held Justin for the first time in my arms that I’d be excited he finally learned to shower a decade-and-a-half later, I would have understandably been upset. The truth is Justin’s development diverged from “typical” as early as his first year, and every year after that I witnessed the gap widening. I will never forget being out to lunch with him just after his first birthday and having a stranger ask me if he was talking yet, and assuring me he would. I can recall a sinking sensation in the pit of my stomach, somehow knowing this well-meaning stranger would be wrong.
Score 1 for mom, zero for stranger.
At first I thought with intense therapy coupled with his innate intelligence we’d be able to move him toward the less severe end of the spectrum, and that was my focus his first few years. I didn’t believe we’d “cure” him, but thought we’d be able to give him some semblance of a more “typical” life than that experienced by individuals on the more severe end of the spectrum. After a few years it became obvious that Justin’s severity was not budging despite our interventions.
I admit, I mourned that prognosis more than I mourned his initial diagnosis.
His world got smaller. His achievements got smaller. I threw away my child development books and thought about what realistic goals I wanted for my son. Communication- an absolute necessity. Sleeping through the night- another necessity, and this one for his mother too. Eating more than carbs each day- a must. Quelling the aggression that popped up from sensory overload or frustration or both- crucial to his happiness and ours.
Slowly, I began to focus on what he could do, not what he was supposed to do.
Once I made that shift the world changed. The panic I’d felt about “catching him up” disappeared. I was able to revel more in each of his small accomplishments and not feel so defeated when a skill just couldn’t be acquired. It was easier to work with him all day, easier to be his mother as well as his therapist.
And that shift was crucial to our relationship too.
Over the years I have learned the importance of celebrating the small stuff, of being as excited that Justin learned to drink from an open cup at ten as when my other son’s school team came in fifth in the Math Olympiad. I’ve learned to listen to friends with teenagers talk about their children’s accomplishments without feeling deeply saddened, and instead learned to focus on all Justin has achieved, and how happy he is with his life.
I’ve learned to focus on giving him the best life possible on his terms, not mine.
And I never forget to celebrate the small stuff.
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October 15, 2018
The Little Things
Fourteen years ago this month I held out a trembling hand as my then seventeen-month-old son’s pediatrician shoved some incomplete articles with the word “autism” prominently placed in the title, wished me luck, and hastily exited the room.
He literally couldn’t get out of there fast enough.
I was left alone to dress my toddler, the same one I’d been told three months before was only slightly delayed, was taking after his father’s childhood development, and not to worry. I remember my hands being so cold while dressing him, feeling numb, in shock. I couldn’t get out of there fast enough either, with my son’s prescription for reflux medicine clenched in my hand. I made it to my car, seated my son, and collapsed. Not a banner experience in our autism journey.
Fortunately, we’ve come so far from that terrible day.
Justin, my severely autistic son, has had many challenges his entire life. There were years I thought he’d be in diapers until he was fifty. We’ve had to have feeding specialists come to our home when he decided to stop eating. Sleep was an elusive dream, aggression at times an unwelcome and frequent companion.
It has not been easy chez McCafferty.
The truth is, fourteen years after that awful, despairing day, even despite the extreme challenges of the past year, we are in such a better place with our son, one I would not have dared hope for over a decade ago. I could tell you his success stems from many things. He had excellent Early Intervention services in New Jersey when he was young. He is in a stellar private autism school. We’ve had excellent ABA services and speech therapy for him since he was little. He has the support of our extended family, and has benefitted from POAC Autism Services’ many events when he was younger. He’s had many interventions with his school’s knowledgeable BCBA.
Most importantly, his success stems from his innate desire for happiness.
All of these things and more have contributed to where he is today, but here’s one thing that’s helped so much that I wish someone had emphasized to me when he was diagnosed at seventeen months.
Sometimes it’s the little things that contribute the most to growth.
When Justin was diagnosed we lived in Virginia, and there was no Early Intervention services worth speaking of at the time. My husband and I hired an outside ABA firm to train us and two therapists, and between the three of us we delivered about thirty-five hours a week of ABA therapy to my son for close to a year-and-a-half. I ended up doing the lion’s share simply because our insurance didn’t cover the therapy back then. I admit there were days it was grueling to work with Justin; some days it was fine but I was overwhelmed with the weight of the importance of what I was doing, how it could affect his whole life. I was often tired, stressed out, and worried I wasn’t doing it right.
But I kept on working with my son, pushing the both of us each day just a little bit more. Within months we saw a happier child acquiring skills easier and easier with each passing day.
I never gave up.
I was a very intense mother those first few years after his diagnosis, when we didn’t know where he’d end up on the spectrum. We know now that Justin will remain on the more severe end, and as I’ve accepted this prognosis I still feel intensely about his progress, but I’ve shifted my goals for him. We still pay attention to the little things, the follow-up, the need to see the skills he learns in school crossover to our home and outings. We continue to push him when we can, to follow up on that suggestion from his teacher or therapist, to not let his acquired skills fall by the wayside.
And yes, it was the big things that brought him to the place he’s in now- the decision to move to New Jersey for real Early Intervention services, the research we did to help get him his private placement. Those things are huge contributing factors in how well he’s doing now.
But I will never discount the little things too. The pushing him just five minutes more in a therapy session. Staying ten extra minutes on an outing just to show him he could do it. Following through on those suggestions from his therapists.
Helping him reach a more independent place even when the getting there was difficult.
Autism can be hard, sometimes excruciatingly so. None of us as parents can be perfect every day.
But as often as you can, try for that extra moment of connection, that acquisition of one more step toward an important goal, push your son or daughter just a little bit more on an outing. Each tiny success accumulates, slowly and subtly making things easier for your child, and for you.
Even when you’re so tired, and I’ve been there, it’s worth the effort.
It’s the little things.
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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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