July 24, 2020

Embracing “All Autisms”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:13 am by autismmommytherapist

I’ve been reading blogs about autistic kids for going on seventeen years now, and I have seen every opinion and topic covered during that time from potty training to aggression, to the “has autism” “is autistic” debate, to whether bloggers should be writing about their kids at all.

I have read impassioned commentary urging moms and dads to “presume competence” and not write about topics which would embarrass their kids. I have read commentary responding that their kids would never understand about the content of their parents’ missives, and that the readers need to vent to get through the day.

I am a blogger who has written about her severely autistic son for a decade. My boy, whom I love dearly and who loves me, has been aggressive in the past. I have written about some instances, but mostly kept them to myself. I’ve preferred to write about his triumphs and pass on tips to other parents to help them navigate the autism world.

The truth is I have chosen this path in part because it didn’t feel right to me to share that side of him, as it is not representative of who he is at his core, or how he predominantly acts at home, in school, or in the community. I also chose not to share to protect him. Anyone could read my blog posts and have a negative attitude toward my son, and that is the last thing I’ve wanted or would ever want. He is a loving, kind boy, and deserves to be perceived that way.

I have not chosen not to write about his episodes because he might come across them on his internet searches and be shamed by what I wrote.

Justin is severely autistic, non-verbal, and has intellectual disability. This does not mean that he is not intelligent. When my son was three one of his therapists pointed out to me that he was able to read, a claim I met with skepticism. After all, I was a teacher, certainly I would have noticed? He was only three. How could she possibly know this when he couldn’t talk?

She knew because when she put out an array of fifteen index cards and asked him to point to each word, he did so perfectly.

He did this over and over, and over again.

My son has some wonderful splinter skills. His ability to read, which peaked at a first grade level, has enabled him to do some academic work throughout the years. It has also permitted him great facility with Edmark, a reading comprehension program he uses both at home and at school. At a certain point he plateaued at about the level of a six-year-old, and yet I have never been more grateful that we could read young children’s books together, that he could do some work, and most importantly, navigate a computer so that he could do his Google searches to his heart’s content. He is able to play a number of games on the computer, and when we recently had to switch to a new browser with different steps necessary to open it he went with the flow like a champ.

And yet, if I read him one of my blog posts, he would not comprehend it. I am certain of this as his mother, as a veteran educator, and by the work he has done for the last fourteen years he’s been in school.

I know that someone somewhere is thinking “presume competence,” and I would respond that I do. I am, however aware of his limits. I work within them and continually push his boundaries in all developmental domains so that he can be his best self, but I know when to respect who he is.

The fact that he has limitations other neurotypical seventeen-year-olds have does not make him less than them.

What bothers me about saying “presume competence” is that to me it implies that somewhere inside my son is an almost-man who can comprehend writing and complex commands on a “typical” level, and that is just not true. He can’t, and that is okay. It also implies to me that he is somehow lacking if he does not have this advanced comprehension level, that there is something missing within my son.

And this, I can say with absolute certainty, could not be farther from the truth.

As a community, we need to embrace all “autisms”. We need to recognize the child almost indistinguishable from his peers who knows an awful lot about Star Wars. We need to understand and support the adult child and the parents of said adult child who has aggressive meltdowns and self-injurious behaviors and intellectual disability. We need to see the girl-in-between-worlds, who can mainstream to a point and knows she’s different and may never live independently. We need to acknowledge the boy who is non-verbal and seems to reside in his own world but has typical intelligence.

We need to embrace them all.

And we need to do it now.

 

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July 8, 2020

Independence

Posted in Life's Little Moments, My Take on Autism tagged , , at 7:05 am by autismmommytherapist

My eldest son is giggling fiercely, entranced by the 3D tour of Universal Studios I’ve googled for him on our computer. He sees the Hagrid Motorcycle ride and gives me the briefest of glances, and I smile and acknowledge that yes, we’ve been on that together. The video is a good twenty minutes long, and I know that afterwards he will amuse himself with other similar fare, and doesn’t need me anymore to orchestrate his entertainment. Every year he grows more and more independent, small steps away from us doing so much for him.

It is a joy to witness.

Something interesting has happened during this long lockdown. For years I have been working on fostering independence with self-help skills and chores with Justin, and while we’ve made progress, it’s been incremental. These last few months I’ve been seeing a subtle shift in his willingness to do more on his own. I’ve seen it in how he dresses himself in the morning, or bathes himself in the shower at night. It’s taking less nudging for me to get him to use a fork at meals. He’s putting his clothes away at night with less prompting. And I have to say, most importantly, he’s been so compliant with me as I’ve put him through his paces with school, having him do chores, worksheets, and work on the computer since his school shut down.

I think the shift has to do with the world slowing down, and us being able to focus on the task at hand without having to rush off to do something else.

Justin will never be completely independent of us. This remains, and will always remain, a bitter pill for me to swallow. My boy was diagnosed with autism at the tender age of seventeen months, which was quite an unusual age in 2004. I then threw myself into doing therapy with him for the next year-and-a-half because Virginia did not provide ABA therapy or recognize an autism diagnosis at that time. My goal was for him to reside at the milder end of the autism spectrum, and ultimately to gain independence from us.

My son will never recognize either goal.

I wish I could change that about his life trajectory. I know some people would say that wish would change him fundamentally and it’s wrong, but I disagree. At the core of who he is Justin is a kind loving soul- that would not change if his degree of autism shifted. I would prefer to leave this earth knowing my child could fend for himself when I’m gone, was not reliant for his lifetime on individuals who won’t even be born when I leave this earth.

I can’t change the fact that he will often remain dependent on others. But I can do all I can to help him do for himself as much as possible.

The knowledge that my kind, brave son can still make progress with patience and practice keeps me going. Knowing that if his parents and his teachers keep working with him he will acquire more skills, which will make things easier on the people who will care for him when his dad and I are gone, is a gift. Realizing that this beautiful boy, who gave me my most important and life-changing role seventeen years ago, will continue to grow and be happy gives me hope.

I know we can continue to grow together.

And at least during this difficult period of quarantine, I can say the two of us have been able to do just that.

 

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June 24, 2020

Father’s Day

Posted in AMT's Faves, Fun Stuff, Life's Little Moments tagged , , , at 10:50 am by autismmommytherapist

 

Dear Jeff,

It is seventeen years ago last month that you became a Dad. And while up until then I’d done most of the work, that dynamic changed the moment your first son came into the world.

My friends had told me to give you a couple of jobs (middle of the night feeding being a favorite), just so you had “ownership” of something related to our boy.

It wasn’t necessary. You’ve been there for him, and for me, every step of the way.

I know things haven’t turned out exactly how we planned. Somewhere in a parallel universe we still live in Washington, DC, we both work, and our two kids, two years apart, are a teen and a tween respectively and driving us crazy with their backtalk (okay, that still applies to one of our kids). Nowhere in “What to Expect When You’re Expecting” was there anything about sleepless nights for a year, reflux that just wouldn’t quit, a general extreme crankiness that defied all logic (that often extended to us too), and a penchant for spinning things that also defied logic (and often gravity).

I know there have been days with Justin that have just completely broken your heart.

And yet, you never give up trying to give our son, and our family, the best life possible.

When our boy was diagnosed at the tender age of seventeen months and we found out Early Intervention in Virginia is a travesty at best, you figured out a way for me to quit my job and do dozens of hours of therapy with him until he could start school. When we realized the school program wouldn’t be right for him (and I began to burn out on ABA) you figured out a way for us to move to Jersey, a chance to give our boy some amazing therapists, a great school program, and proximity to relatives and friends who could help.

I truly don’t know how we would have made it those first few years without that bold move.

We’ve had so many decisions to make over the years, some of them soul-suckingly hard. Where to live. What school placement to put him in. What ancillary therapies to provide him. What medications to try, and try again. Which doctors to take him to for first, second and third opinions. Whether or not to have another child (we did, and happy to say, it worked out). Hell, just for dealing with our insurance companies you deserve a medal.

You’ve been there to help me with all of them.

You have listened when I poured my heart out to you about my quandaries around inclusion, my desire to give him a hobby other than technology, my drive to take him out into the community even when it wasn’t pleasant. You have held my hand when I’ve had to let many of our dreams for Justin go, and helped me rally to remember all the good things he has in his limited, but generally happy life.

You have been my sounding board, my sanity, my friend.

Perhaps most importantly, you learned how to be a part of Justin’s world, meeting him on his terms, which has forged such a close bond between the two of you. He loves when you echo his favorite lines from “Up,” adores when you scratch his face with your five o’clock shadow, treasures those moments of “snuggle time” on the couch.

He loves you, truly and deeply, with a connection forged in your relentless pursuit to bond with him.

He is one lucky boy.

I am one lucky wife.

From Zach, Justin and myself, Happy Father’s Day my love.

 

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May 25, 2020

Dear Justin’s Teachers

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 7:10 am by autismmommytherapist

Dear Justin’s teachers,

It would be the understatement of the year to say we miss you.

It’s been ten weeks now of home instruction, and while I feel extremely grateful to say it’s gone well, I know having his mom teach him is no replacement for all of your expertise. The fact that he lets me lead him around the house to do various tasks is not nearly as much a testament to my teaching prowess as it is to the landscape of learning you’ve laid down for him since he was seven, inculcating a love of learning and a willingness to be taught that I could never have inspired here.

Have I mentioned we miss you?

As usual, as soon as school closed you had a plan, and instruction started the first day Justin no longer had the option to physically attend school. You quickly implemented Zoom meetings which always elicit at least a few smiles from my boy when he sees you (and smiles from me when it works), and with your excellent instructions I’ve seen my boy make progress. To my delight I can’t say he’s regressed in any area so far.

May that remain the truth.

The support from all of you has been incredible. The fact that my son can still get excellent ABA services, speech therapy, occupational therapy and PE while a global pandemic is going on is phenomenal. And while I am fully aware that all of you do a much better job than me, I still feel like he’s moving forward and acquiring skills.

I even dare say he’s enjoying it.

I’ve learned a lot about my son these last two-and-a-half months. I’ve completely shed my fears that he’d be miserable at home if there’s a significant gap between graduation and a day program years from now. I’ve learned that my son likes long walks, and won’t try to get into the car to go somewhere a lot more fun than his house. I’ve realized that my boy, who is at the cusp of adulthood, a still-child who has had significant behavioral struggles in the past, is yet again that inherently happy soul I knew in his youth.

And so much of that peace, that contentment, those rare smiles that undo me, is because of all of you and your hard work with him this decade past.

I don’t know when he’ll return to you. But I do know this.

With all of your help, hopefully I will be sending you back an almost- man who’s made progress with self-help skills.

And with luck, I will be returning a student who’s improved academically, with his love of learning intact.

I am confident I will be giving back a child who is infinitely happier seeing his teachers in person than seeing them on a screen.

Thank you for all you’ve done for him and all your students this year, and every year past. We can’t wait until this is over, but in the meantime, thankfully, we’re okay.

We hope to see you soon!

 

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May 10, 2020

Mother’s Day

Posted in Life's Little Moments, My Take on Autism tagged , , , at 10:36 am by autismmommytherapist

Oh, what an interesting Mother’s Day this will be.

Normally, there is a lot of pageantry surrounding Mother’s Day in this house, as I consider it to be a high holiday. In years past there have been scavenger hunts conducted by my youngest, and homemade cards galore. There is always at least one meal I don’t have to cook (yay!), a few gifts, and a general air that I am queen for a day. My youngest and I usually go to church, followed up by a family trip to Great Adventure. Top that off with a visit from Grandma to celebrate, and Mother’s Day has always been a special event chez McCafferty.

This year, of course, will be different.

Hopefully the not cooking one meal will stand (a girl must have her dreams). My youngest is now way too old for scavenger hunts, and Great Adventure along with everything else in the world is closed.

If there is a Grandma sighting, it will be with her masked and waving from the driveway.

No, Mother’s Day won’t resemble anything like our usual celebrations.

But cherish it I will.

Seventeen years ago this month my beautiful son Justin made me a mom. I hoped for healthy and happy, and secretly wished he’d love to read and go to the beach as much as I do.

For short periods, he likes to do both.

I can tell you that almost none of what I envisioned for his life trajectory has come to pass, nor will happen. I envisioned playdates and driver’s licenses. Prom, college, and maybe grandkids before I was ancient.

The truth is, absolutely none of this is going to happen.

I won’t tell you it doesn’t matter. But what I will tell you is that my boy and I have been able to forge an unbreakable bond of love and trust I wouldn’t trade for the world. He has taught me patience and tenacity in spades. I love him to the moon and back.

Thirteen years ago my incredible son Zach completed our family. He has taught me to look at the world in unique ways, to perservere, and to love Marvel movies with all my heart. My youngest will have more of a “traditional” life, whatever form that takes.

And I can’t wait to see what form that takes.

The truth is, I have many roles in this world, but the one of mom has been my calling. I couldn’t ask for better sons.

I will fight for your happiness with my last breath.

I will always be your champion and ally.

I love you both so much.

Thank you for making me a mom!

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May 2, 2020

Just Breathe

Posted in Life's Little Moments, My Take on Autism tagged , , , at 6:43 am by autismmommytherapist

Week Six of homeschooling complete. We have survived.

The weeks have gone smoothly with my middle schooler. He is so used to doing assignments in Google Classroom that there’s been barely a hitch all these weeks, and his schoolwork has kept him busy on average about four hours a day. This left me ample time to monitor my severely autistic teenager, who has been an absolute champ at rotating through stations in my house where we do work.

By the end of the first week of homeschooling I’d received lesson plans for Justin that went into full force. Doing ABA, speech, OT and PT has been a bit challenging, but has revived skills I used with Justin many years ago. Ironically we’ve gone “Circle of Life” here because sixteen years ago I spent almost a year-and-a-half as his ABA teacher. We lived in Virginia then, which offered me scant hours of speech and OT, and no hours of core autism therapy. I got trained in the practice of ABA and worked with him about six hours a day until we moved to New Jersey and within weeks had more than thirty hours of instruction weekly in our home. No matter how challenging the coming months may be instructing Justin, nothing will ever compare to that period where I daily felt desperate that I wasn’t doing enough or doing it right. Whatever Justin gets out of this, he will be fine.

And I will be fine too.

It is an understatement to say it is not easy to homeschool your own child (homeschooling moms and dads everywhere, I salute you!). The first week I saw posts on Facebook by incredibly strong moms who were brought to their knees by 10:00 on the second day. I taught fourth, fifth and sixth grade for twelve years in DC and Virginia, and I can honestly tell you that teaching thirty students who are not yours is often easier than teaching your own. Add in that some of these parents are still trying to work from home or have to work outside their houses, have multiple kids, not enough computers, have elementary school kids who are more hands-on, or might have children with special needs who need one-on-one instruction (plus the meals!), and posts about “suspending” their kids are completely understandable.

I just want you to know you’ll get through this too.

None of us knows as of this moment how long this will last. One thing I do know however is that you’re going to figure out how to give your children what they need, even if it takes a few weeks in the process. Especially for those of us with severely disabled kids, don’t make yourself crazy trying to get to every assignment. The teachers at your child’s school are trained in what to do with them- most likely you are not. I can guarantee they are not expecting you to deliver services like they do, and they will be happy to see your child is doing something to keep skills in place and stave off regression. Do what you can. They will be okay.

You will too.

Parents, make sure you take breaks too, whether it’s exercising, a stolen show on Netflix, or just some wine you hopefully stocked up on in case the liquor stores close (heaven forbid!). Do your best, but be good to yourselves too. You will figure it out.

Take care of yourselves.

Eat chocolate if you have some.

Just breathe.

 

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April 13, 2020

Moments

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 7:04 am by autismmommytherapist

The familiar notes of the Edmark Reading Program emanate from the computer, as my son lets out his elusive giggle and stares me straight in the eye. He is on this program often so I’m not certain what instigated his mirth, but perhaps it’s because his mom is sitting next to him this time. He continues to laugh as I choose programs for him, hoping to elongate his homeschooling just a bit longer. All too soon the laughing ceases as he gets back to the more serious business of learning, and the moment is gone.

The cool thing is, I am confident there will be more of those moments to come.

Please don’t think this is a rousing endorsement of sheltering in place. I desperately wish my severely autistic seventeen-year-old was in his beloved school. We worked so hard to get him this placement, and I have tried so hard to get him there every single day that was possible. I am so grateful this is not his last year, and feel so badly for those of his classmates who will probably never go back. I know I will be a mess when he graduates, and am grateful I am spared that sadness this year.

Justin has been absolutely amazing these last few weeks. When we first heard about the two week school quarantine, and I began to suspect it would last much longer, I wasn’t sure how this was going to go. In past years Justin would have been throwing his shoes at me every day and clamoring to go to the car. Our existence would have been a nightmare, as no explanation would have sufficed for a kid who could clearly see there was no snow outside, and no earthly reason why his mom couldn’t take him somewhere fun.

Just shy of two years ago Justin began terrible body movements that after nine months and seven different diagnoses was finally termed tic disorder, and I cannot imagine how that terrible almost-year of waiting and worrying would have played out could we not have left the house and met with the doctors. The timing for this, at least chez McCafferty, has been doable.

So far, he seems to have adjusted beautifully. There is a rhythm to our days now, which is important to him. We work together in the morning, he takes a technology break, and then we work together after lunch. It’s been smooth sailing thus far.

But what I didn’t anticipate would be those fleeting yet frequent moments of connection, the gift of eye contact, that elongated hug that is often all too short. One of the things the tic disorder seemed to deprive my boy of was the need for affection, once a staple in his life. I’ve missed that part of him as he was always my cuddly boy, which a lifetime ago had made his diagnosis seem impossible. I’m seeing some of that affectionate nature to return, and it makes these difficult times easier to bear.

It helps to get me through these days of worry and uncertainty, and for me the hardest part, not knowing when they’ll end.

He is a joy, and I love him.

And for now, that will have to be enough.

 

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April 2, 2020

World Autism Awareness Day 2020

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 6:20 am by autismmommytherapist

Today is World Autism Awareness Day, thinking of all families during this difficult time!

I walk into the kitchen area holding my Tupperware, material for one of the many activities I’ve been doing with Justin, my severely autistic teenager (he matches lids to bottoms better than I do). My eldest is now heading upstairs for some computer time well-earned, and my youngest is on hour three of virtual homeschooling. I take a moment to reflect upon how grateful I am that the last two weeks have gone so smoothly, and treat myself to a piece of chocolate.

My priorities are still intact.

There were a few glitches when I started homeschooling Justin, but the staff at his school have been wonderful with communication and I think I’ve figured them all out. I’ve been reaching out to my group of friends with autistic children, and there seems to be a unanimous consensus- everyone has adjusted and is doing really well. Autistic kids and adults are not really known for their capacity to adapt to change- many love their routines religiously, and the virus has completely disrupted that sense of continuity for them. Like many of my friends I’ve worried that Justin would have meltdowns when he realized he wasn’t going to school or anywhere- years ago, this would have completely been the case. Instead, like my friends’ children, he has completely gone with the flow, even complying to take walks around the neighborhood and not insisting on getting into my car.

I’m grateful for that too.

The truth is I’m not surprised by how well it’s gone for me and my friends. Being autism families, most of us have all spent a great deal of time in our houses at some point in our lives. There were years where there were only a handful of places I could take Justin due to his behaviors, and certainly we were not going out as often as most of my friends with neurotypical kids. I remember when we came up to Jersey from Virginia to house hunt I told my husband we’d better really love the house we chose because we’d be spending a lot of time in it, and that has proven to be true. And while my ability to get Justin out has increased over the years, his desire to go certain places has decreased. We are home a lot. We’ve had a lot of practice with self-quarantine.

We’ve also had a lot of experience with adversity.

While I am thrilled with our success and the success of my friends’ families, I am under no illusion that shelter in place has gone so well for all the families in our community. I have read many posts online of families who are really struggling. There are those with higher functioning children and adults who don’t understand why they’re not going to beloved schools and day programs. There are more challenged adults and children bereft at their inability to go to a favorite restaurant or movie theater. There are children who have begun to regress in skills, adults exhibiting aggressive or self-injurious behavior.

There are many families not posting pictures of their fabulous social distancing hikes.

I’m writing this post because there are families out there who are truly struggling, who are even more isolated than they were two weeks ago. There are many with children and adults who are truly suffering with these restrictions, who are unable to comprehend why mom and dad can’t tell them when this will be over.

I want you to know you are not forgotten.

I want you to know you are strong, and you will get through this.

I want you to remember that someday, while we will have a “new normal,” this will be over.

We see you.

We remember you.

Don’t give up.

 

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March 9, 2020

Hope and Chicken Tikka Masala

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 12:58 pm by autismmommytherapist

Last week I had the good fortune to meet a dear friend for lunch (Indian food, my fave!) in a town halfway for both of us, which means a good forty-five minute drive for each. I am compulsively early to things (my mom is too, I come by it honestly), so of course after running errands I managed to get to the strip mall twenty minutes early. As I drove in I happened to look up to my left at the first building in the lineup (hoping I could compensate my compulsion with some shopping) and saw in big letters the sign “Disability Allies,” and knew I’d found a place to kill some time with a purpose.

I knew with a little luck I’d get my first tour of a day program for autistic adults.

Justin is just about to turn seventeen, so even though I’m a planner extraordinaire I will not start formally looking for about another three years. I thought to myself however that I could go in and try to talk to someone and most likely get turned away, or perhaps I could charm my way into an impromptu tour.

Lucky for me, the latter transpired.

I had a fifteen minute conversation with the director, Audrey, who told me all about her adult child who attended this day program (a plus in my book), how they were relatively new, and her dreams for the place. She could not have been lovelier, taking time out of her day for a fellow special needs parent who was most likely not going to send her child here due to distance, but wanted to “host” her anyway.

We had a lovely chat, and then I got the tour.

I really wasn’t sure what to expect as I’d never visited a day program before. Quite honestly I’ve been told by friends whose kids are in their twenties that my expectations should center around keeping him “happy and safe,” which has never exactly seemed like a rousing endorsement to me. I’ve kept those two goals in mind (including “clean”) and hoped frankly I wouldn’t walk out of these centers depressed that there is nothing out there which will ever come close to his amazing autism school where he’s been for ten years.

Honestly, nothing will ever come close to his amazing autism school.

The truth is however a day program he must one day attend, and I am devoted to finding one that’s a good fit for him, where he gets out into the community frequently, has some fun, and yes, is happy and safe.

After my brief tour I will tell you I have a lot more hope that I can accomplish this goal.

We began in a large, organized and well-lit room where several instructors were working with the disabled adults on theater. We then progressed into a clean kitchen where several other adults were whipping up something delicious (if it wasn’t for the forthcoming Indian food I would have been jealous), an activity which they do several times per week. We finished the tour by ending up in a conference room where the adults were working on life skills such as creating budgets and goals for their future.

In each room, every client looked happy.

Do I think Justin would get anything out of a program like this? No, I don’t. I will be looking for something with daily outings, access to computers and DVDs, maybe even a heated pool if possible. I know my boy’s likes and dislikes and his ability level, and this program would never match them.

But still, on a whim I got to see a place that was clean, and where the participants were happy and safe. I got to meet a director impassioned to deliver excellent services to her charges, who was excited about all the things she hoped to bring to her program in the years to come.

In one day I got chicken tikka masala and hope.

A good day for all.

 

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February 25, 2020

The Big Picture

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:45 am by autismmommytherapist

In the past several weeks I’ve been talking to parents of young autistic kids, and it has brought back memories of many of the struggles and triumphs I had with both my children back in the day. There were some dark years back then, and some resounding triumphs too. I remember having an overwhelming sense of urgency to “get it right,” that a certain diet or classroom or instructional methodology would make the difference between whether or not he ever ate a vegetable, spoke, or lived an independent life.

I can tell you now with complete honesty that except for the vegetables, none of those things came to or will ever come to pass.

The truth is despite excellent teachers, therapists, and a teacher mom who worked non-stop with him for almost two years before he went to school because Early Intervention in Virginia for autistic kids was a joke, he will never achieve the latter two goals. I can’t say I’m at peace with this. I will particularly never be reconciled with his lack of future independence due to the safety issues, but I will say I have accepted it.

Really, what else is there to do when you’ve tried everything.

Talking with parents about their young kids and their hopes and dreams for them often makes me take a look at the choices my husband and I made with both boys. There are definitely some things I would do differently.

But there is one thing I would not. And that is knowing when to let go.

Perhaps there are parents out there able to look at their toddlers and be at peace with the fact they’ll never have functional language, but I was not one of those parents. I read everything out there, and at the time a few studies showed that sign language seemed to encourage more verbal speech than other methods of communication. When we finally moved to New Jersey and had excellent Early Intervention services I remember being so adamant that the team sign with him for this reason. I did not take into account his lack of imitation skills, or his fine motor issues. We went on in this vein for months, with little or no progress.

And finally a member of the team pointed these deficits out to me, recommended the PECS system which could eventually lead to an iPad for communicating, and let me think about it.

Although it felt a little bit like I was giving up on speech, I had to look at the big picture- that my son needed a method of communicating or he would be deeply frustrated his entire life. Just because he was bright and I wanted him to talk didn’t mean he ever would. I had to do what was best for him with the skills he had.

Eventually he moved onto the iPad and Proloquo2go, and can communicate his needs beautifully. He had some words before he developed tic disorder, but they are mostly gone now. Thankfully due to his ability to read and type simple words he still has a means to tell the world what he wants.

If I had never listened to that therapist there might have been a different story.

Keeping the big picture in mind is crucial when you’re making the huge, and sometimes small, decisions about your child’s life. When Justin was younger we really wanted him in a public school setting where he’d have opportunities to engage with neurotypical peers. It eventually became obvious that the public school system would not be able to meet his needs, and his father and I had to consider private autism schools where there’d probably be no chance of immersion in the neurotypical world. We made the choice to move him, and it was without question the best decision we’ve ever made for him.

But once again I had to let a dream go and look at what would be best for him in the longterm, and I’m so glad I did.

Through many bumps in the road Justin is thriving now. I know this is in part to his father and I always keeping the big picture in mind when choices are presented to us. It’s so important to look at the skills your child has as well as the deficits and try to match those skills with a particular school program or a method of therapy. Keeping an open mind is key, and remembering it’s about where they’ll best succeed, not how you want them to succeed.

And as adulthood approaches I will try to take my own advice to heart.

 

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