October 20, 2017

Dear Kim

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

(Editor’s note: this is the letter I would write to myself if I were an old lady telling my younger self things would be okay, even after both boys were diagnosed with autism)

Dear Kim,

Hi hon. I want you to know, I see how exhausted you are. You just got your severely autistic five-year-old settled into your district’s kindergarten program, and what a long five years it’s been with him, even with all the progress he’s made. I know you thought you were home free with your youngest boy, the one who made all his milestones on time and has been babbling up a storm, the one who your pediatrician says is “fine” when you make your anxious inquiries. I know you went on a much-deserved vacation and came back to a sick toddler who’s stopped speaking, has a rash all over his body, and has lost the light in his eyes. I know you’re thinking that Justin showed signs of autism as early as six months, and this baby didn’t until this week. I know you know what the doctor is going to say when you take him in for that appt., the myriad phone calls you’re going to have to make, the Early Intervention program you’ll have to create for him. I know how much work this will be for you, once again.

I know you’re wondering how the hell both of your kids could have two different kinds of autism.

It must seem impossible to you, how you’re going to manage, how you could possibly create a life where you meet the needs of both your boys. After all, Justin is still potty-training (so much fun!), still “learning” how to sleep through the night, and still refusing to eat anything other than a carb on most occasions. There’s still his meltdowns to deal with, your need to create plans B, C, and D whenever you take him anywhere.

There’s still the enormous amount of time he needs you, and the depth of that need.

You comfort yourself with the fact that your oldest will be out of the house for seven hours a day so you can focus on your youngest’s needs, and believe me, that time will save you. Despite your exhaustion you will be able to manage the eleven different people traipsing through you house for the next fifteen months (you should have been a party planner, your attention to detail from being a teacher will come in handy). You will be grateful that at least this time you live in a state where there is actually an Early Intervention program that doesn’t expect you to do it all yourself (sorry Virginia), and these practitioners will truly help your child. You will spend more time with them than your own husband.

And a bonus; two of them will become good friends.

I know you are mourning quietly in your few moments of solitude, because that’s all the time you get. I know this experience with Zach is so different than what happened with Justin, because somehow around the time your oldest was learning to sit up you knew he was different, and sensed his difference would be challenging. I know this gave you time to ease into his diagnosis.

This time you went away and came home to a different child, one who seems to have most of the joy sucked out of him. You wonder if you’ll even see that spark again. You wonder if he’ll ever say “mama” again.

You wonder if he’ll ever be happy.

I want you to know that I see the strain, the way your husband believes your little one will “come back,” and how you just can’t allow your heart to embrace that idea because the alternative is too painful. I see how your heart will love them both no matter what, but how much you wanted at least one to live an independent life, and how that dream may now be shattered. I see you both mourning the now and the later, acknowledging that you will have to wait and see what happens. I see that is perhaps the most difficult part for you, planner that you are.

I see you desperately wish someone would just end your misery and tell you how it all turns out.

I can’t tell you the ending; I can’t even tell you the middle. But I can tell you that you will make it through those early years, the ones where your entire existence is therapy, chores and the anxiety that takes up permanent residence in the recesses of your brain and claims your sleep. I can tell you that your attention to detail, your refusal to cut corners, and the decisions you make regarding school placements, diets, and therapists will pay off.

I can tell you that your eldest child will one day not only sleep through the night almost every night, but will joyously welcome slumber.

I can tell you your eldest child who hated the car and going anywhere for more than thirty-two minutes will now revel in your excursions, and bring you his sneakers in a plea to go out.

I can tell you this same child now eats lettuce and broccoli with gusto (and yes, you wanted a medal).

I can tell you your youngest will not only speak in full sentences again, but will keep you running to google to answer the vast amount of questions your old brain no longer has the answers to.

I can tell you your youngest will have friends, will enjoy a wide array of activities both in and out of school.

I can tell you a few years from now you will have no doubts about his ability to lead an independent life, and to look out for his brother when you’re gone.

I can tell you both boys will regain their happy, joyous souls.

I can tell you that you will once again sleep (albeit it’s “old lady sleep”).

I can tell you your daily life will still have its struggles, but they are mostly outweighed by its joys. I can tell you your life will always be shades of gray, some mourning of what could have been, some acceptance, and always some celebration of what is and what will be.

I can tell you that you will have a happy family, the dream you held onto all those years you struggled to create one. It will look different than you expected. There will be challenges you could not have foreseen.

I can tell you your profound love for them both will make a difference.

I will tell you, a happy family it will be.

And for you, it will be okay.

 

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October 9, 2017

Transition

Posted in Life's Little Moments, My Take on Autism tagged , , at 11:27 am by autismmommytherapist

I have to tell you readers, my brain is spinning a bit lately.

You see, my son, my beautiful severely autistic son, turned fourteen this spring, which means his next IEP meeting is a “transition” meeting. In an effort to prepare I googled “transition,” and it means “the process or period of changing from one state or condition to another.”

I know it is a process his mama will have to go through too.

To be honest, my quest for transition information is a bit of a first world autism problem for Justin. There are so many resources out there, numerous agencies with websites and webinars dedicated to just this very process that I should be able to access the information I need pretty easily, for which I am grateful. I can’t imagine going through this twenty years ago.

Hell, I can’t imagine doing any of this twenty years ago.

But still, it’s overwhelming. I recently printed out information from the DDD website about all the issues I will need to address. I have to make sure he’s eligible for DDD and Medicaid. I will have to apply for guardianship (it somewhat amuses me that I will have to pay several thousand dollars to make sure he remains mine). There is a potential job (?) to consider. Housing. Legal planning.

Also there’s who will love him when I’m gone, but I don’t think that will be on the IEP agenda.

It turns out Justin’s school is planning an information fair that will take place hours after my IEP meeting, so in typical “awesomeness” fashion his principal agreed to meet with me a few weeks beforehand so I’m not walking into this meeting blind about what options await my boy. Planner that I am I need to know my choices, and trust me, I’m grateful that with his school there will probably be choices for him. He’s doing really well there; perhaps a small job will be in store for him, perhaps not.

I would really enjoy telling his little brother that Justin is earning his keep.

I don’t know what will happen at his IEP meeting, but I’m already creating my list of questions (it will be long), and I’m feeling rather positive about future changes, which from a woman who’s not big on change is a huge step. It helps immeasurably to know he’s in good hands, that his last seven years of educational entitlement will have a variety of possibilities to engage my boy.

It helps stave off my other worries. Where will he live? Will he get into a day program? Will he deign to stay in said day program? Will I become his nanny when he turns twenty-one and graduates with me sobbing my guts out noisily on graduation day (trust me it’s coming). Will he be safe? Will I ever get some “Kim time” again (I have my priorities).

Will he like his adult life even a fraction of how much he loves his childhood?

See, the thing is, I want it all to be good for him. I remember mentioning his “remaining eighty years” once at an IEP meeting years ago (I think he was five) and getting some incredulous looks around the table, but yes people, I think about this on a daily basis. He’s worked so hard all these years. He’s in the least behavioral and most academic of the classrooms for his age group at his school. He can’t go an hour without hugging me for no reason. He laughs often.

He’s happy.

And I’m going to do the best I can to make things stay that way.

 

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October 2, 2017

Shades of Gray

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:58 am by autismmommytherapist

It was a simple question, asked at a party of people I hadn’t seen in years. “What grade is Justin in now?” was the query, but the truth is I had to stop and think about it because they don’t really do grades at his private autism school. “He’s in ninth” I replied, and we moved on to talking about our other kids and people we had in common. Soon a friend of my friend captured her attention, and I was left for a moment alone, with chicken on a stick, some good pinot grigiot, and my thoughts.

Ninth grade. High school.

My boy is in high school.

One would think that realization would have occurred to me in August, not September after he’d already been back in school several weeks, but honestly the end of August/beginning of September is such a blur I’d only been able to retain one kid’s grade (5th, so proud of myself), and hadn’t really given much thought to such a momentous leap on my eldest’s part. As I savored my poultry and looked around the room the enormity of his age, his maturity (and mine) hit me.

If he wasn’t severely autistic, in three years he’d be going to college like all the children of everyone else in this room who had their progeny at a decent age.

I won’t lie to you, this realization hit me like a ton of bricks. Since my other child is younger than Justin I haven’t yet been a high school or college mom, so I’ve only watched vicariously as my nieces and nephews and friends’ kids have gone off to the big time. I’ve hugged the parents of those children, reassured them that they are fully “cooked” and will do fine. I’ve consoled them when empty nest syndrome ruled the day. I’ve listened to their fears and concerns (will one ever sleep, will one party his tuition away), and have reinforced my feelings that their kids will be okay, they’ve been given the tools to move on to their (more or less) independent lives.

An independent life. That was the brass ring for me for Justin’s hoped-for progress when he was diagnosed at seventeen months a decade-and-a-half ago, and it’s been the hardest thing for me to relinquish in my dreams for him.

Don’t get me wrong. Sometimes I’m sad that he’ll never go to the prom, attend college, have a career, or get his license (okay, maybe not so much that one) too. I will probably mourn these things my entire life, not because I want to relive these events through him, but because I know they would have brought him pleasure. I have read articles over the years chastising parents for feeling this way, and to that I literally say “phooey.” These events are precursors to finding love, learning skills, and the holy grail, independence.

It’s okay to be sad sometimes.

But the truth is my sadness is tempered by the fact he will never know what these things are, and won’t miss what he doesn’t know. My boy revels in routine, in having his mom greet him when he gets off the bus, in making him his expensive pretzels, and singing him the same three songs he’s listened to since babyhood. He’s happy, gloriously so.

And trust me, having a severely autistic teenager in the house who’s predominantly happy is the holy grail too.

I’ve learned to shelve my fears over his future both so I can function, and because I choose to enjoy my present life, which despite the challenges of raising an autistic child is pretty great. I don’t want to miss a moment. He is joyous, and safe. He loves his life.

And for that, I am eternally grateful.

Being a caregiver to a disabled person is rewarding, and challenging, fulfilling and grueling all at once. My husband and I don’t know if we’ll be doing this full-time for twenty-five years or fifty. We struggle with determining what we think will be best with Justin, all the while knowing we may not have many different options for his lifetime care. I struggle also with figuring out what’s best for me- I seesaw between a need to regain my own independence and keeping him with us until the last possible second. I’m not sure what’s best for us.

More importantly, I’m not sure what’s best for him.

I’m hoping the decision becomes crystal clear for me down the road, revealing our best option like a good series finale that answers those questions you’ve been carrying about for seven seasons. I don’t yet know what I’ll decide.

But I do know this.

My youngest, who is mildly autistic, has a great shot at college, a career, a wife, and a life away from his mom and dad. Will I miss him when he goes? Absolutely.

Will I revel in the fact that he can leave? Absolutely too.

Will I forever mourn and simultaneously just deal with the fact that Justin will always need help to make it through the day? Yup, that too.

Our decisions are not clear cut. Our feelings don’t have to be black and white.

I’m pretty sure for a good long time I’ll be dwelling in shades of gray.

 

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September 25, 2017

Dear Soon-to-be-ex-case-manager

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:20 am by autismmommytherapist

Dear Soon to be ex-Case Manager,

The call from you came yesterday with that bland generic “my sons’ public school district’s” phone number popping up, and as always, I held my breath.

Is Zach sick?

Did I forget to send in his lunch (again)?

Is Justin’s placement in jeopardy (Dear God no, it’s too early for wine).

Fortunately it was none of the above, just you dear case manager, calling to tell me after about eleven years of almost continuous service for our boy, you’ve been reassigned.

Cue adrenaline, and deep deep regret.

I’ll have Justin’s public school administrators know that this was not in the Kim McCafferty lifetime plan, the one where we had you for the next seven years, inappropriately invite you to his high school graduation, and bask in our mutual understanding of one another. We’ve had two other case managers over the years and they were lovely, but neither lasted that long so I didn’t become attached.

Yes, I know I have an issue.

I easily recall the day you let us know you’d been reassigned once more to our family. It involved my 6’4” husband almost dancing (yes, I said dancing) across the front lawn holding out the phone to me as I waited for Justin, crowing with delight the words that filled our hearts- “She’s back! She’s back!” as I skipped (yup!) across our grass to grab the phone to hear it for myself.

Pathetic? Maybe. But I guarantee any parent of an autistic child reading this gets it.

The thing is, you “get” us, and you “get” Justin, and that’s absolutely priceless. I remember meeting you eleven years ago after we’d just moved to NJ from Washington, DC, and frankly, I was still in a bit of shock (and unbeknownst to me at the time about to get pregnant again, trust me, an even bigger shock). You calmly walked a very stressed out mom through all our options for Justin at that first meeting, and when things didn’t go as planned, helped us come up with viable alternatives.

You truly listened to us. As a former educator, I knew it was a gift.

The thing is, you’ve watched him grow up. You’ve seen him through three different communication systems, just as many placements, and you never balked when we came to the difficult decision that perhaps a public school placement wasn’t the right thing for him anymore. You (almost literally) held my hand as we looked at different options, scouted out others on your own, and led me away from places you told me you’d never send your own kids.

I can’t tell you how much I appreciated your honesty.

You always returned my calls, even in the early days when the sheer volume of my queries would have driven anyone to quit. You supported our choice of placement, rejoiced when he got accepted. When his iPad eventually broke (twice) you moved mountains to get it fixed so my boy wouldn’t be without his words.

In my words, I’m so grateful that you cared.

You see, the thing is dear case manager, I was hoping if this family kept our heads down the powers that be wouldn’t notice you’d been with us almost a decade, but I guess a little reorganization is in order, and it’s time to share the wealth of you. Before you go I want you to know how much your concern for our family, your organizational skills, and your knowledge base helped us. You were one less thing I had to worry about, and trust me, especially in those days where I had two autistic kids under the age of four, I needed one less thing to worry about.

I know that’s not in your job description, but thanks anyway.

You really were magnificent, and trust me, I’m a former teacher from a family of them, I know what’s out there. You will forever be a part of “Team Justin,” and have made a major contribution to my productive, kind, and happy child. Please take that knowledge with you when you go, and know how lucky those future families are (yes, I’m jealous). And know that if you ever come back, skipping and dancing will again ensue.

It’s a promise.

Thank you.

 

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September 19, 2017

Enough

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:09 am by autismmommytherapist

I still remember the day I knew my autistic son would remain on the severe end of the spectrum.

Justin was five, and in the last few weeks of his pre-school program before he would transition back into district to his hometown public school. I recall going to his classroom for some type of program, the theme of which escapes me, and seeing a little blond haired girl he’d started with almost two years prior who had presented almost exactly like my boy. I remember watching as this young lady used words to get what she wanted, made eye contact with everyone around her, was able to sit still while waiting for the show to begin. She still flapped her hands as she waited, but none of the other stims I’d seen her do when she began school at the tender age of three seemed to have remained with her. She was joyful, talkative, engaged.

She no longer bore any resemblance to my son.

I recall how the realization hit me like a wave, starting in my gut, hitting me hard in my heart and flooding my eyes with tears I had trouble keeping back. My boy had been diagnosed at seventeen months, back when that was unheard of. He’d been in either a thirty hour a week ABA program or full day pre-school for three-and-a-half years. Had he made progress? Absolutely. He had gone from using meltdowns to get his needs met to using the PECS system very successfully to acquire what he wanted. He had finally learned how to sleep through the night (my favorite of all his skill acquisitions). He was eating things that didn’t fall into the carb category, and we’d finally found ourselves able to take him places with varying degrees of success. Potty training had been (mostly) conquered. His life, and by extension, his parents’ lives, were so much easier than those dark days of his infancy when we didn’t know how to make him happy, and his toddler years, where almost every aspect of his life was a struggle.

But still, there was so little eye contact unless it was with us. He still spent a good deal of time unhappy and at odds with the world around him.

There were still no words.

I remember watching the program with an overwhelming sadness, with hope waging a steady war with reality inside my head. Part of me said he was only five, how could I possibly predict the trajectory of his life at such a tender age, particularly when I knew he was bright?

But the truth is, I just knew. After all, I had another autistic child at home who had regressed at twenty-one months, lost all of his words, and had retreated into his own world. Within three months of therapy he was speaking again, and while different from the child we had known before, we watched as every day he made tremendous progress in regaining the skills he had lost, showed an increasing interest each day with the world and the people in it. All of his Early Intervention therapists were amazed at how quickly he progressed, touting him as an “early therapy success story.”

And I remember thinking fiercely as I drove home that day that despite the modest gains Justin had made, I considered him a “success story” too.

I admit, after my realization I mourned again, as I had when he had been diagnosed, and I knew from my prior teaching days exactly what he and our family were in for. I had never wished him off the spectrum- I didn’t believe it was possible frankly, and I had taught plenty of students with mild autism who had wonderful and fulfilling lives. Over time I accepted he would not have the life I had assumed he’d lead- the one with friends, and driving, and college, and sleepovers, and someone to love- and the one that was hardest of all for me, independence.

It’s his inability to lead an independent life that still lays me low today.

Over time, my premonitions about both boys turned out to be right. My youngest is now fully mainstreamed in a non-inclusion class, and shed his 504 this year. He has friends, participates in activities within and outside of school. He talks about his future wife and five kids, and my heart never clenches as I anticipate he will realize that dream someday (hopefully with a well-paying job to go with it).

My gut tells me he will be able to care for himself after I’m dead. For this, I am eternally grateful.

Justin will not. And I know, as I know I will never give up eating chocolate, that I will never get over this aspect of his disorder.

The truth is, I haven’t made my peace with it, and I expect I never will. When I think of the enormous amount of details that go into keeping my now teenaged autistic son happy and the dozens and dozens of people who will be charged with caring for him until his death, I am overwhelmed. The thing is however, his father and I and many, many, many other people have been able to craft a wonderful life for him, the one that he wants, not the one we wanted for him. Justin adores his school. He loves going places for short periods of time, and has a number of locations in his repertoire. He gives me more hugs and kisses than any teenager gives his mother on the entire planet.

My dreams for this level of detail to exist for the forty years he’ll be there without me will probably not be realized- my rational mind knows this.

I haven’t made my peace with having him live on this earth without me, but I have made my peace with this. I’ve let go of what I thought he’d need, and accepted what he does need. He needs his autism school. He needs his mom, his dad, and his little brother. He needs exactly fifteen pretzels nuggets daily to fill his tummy. He needs access to the computer so he can “drive” on the Hertz rent-a-car site (he’s been all over Jersey!).

He needs affection, and hugs, and love.

Don’t we all.

So I’m trying, and I am a work in progress, to dwell in the now, not in the later. My “now” is two ridiculously happy boys on the spectrum, who revel in their lives, one on the severe end, one not. They love school. They have activities that engage them. They relate to and adore their families. Both of them love their pretzels.

They are happy.

And for now, I am trying very hard for that to be enough.

 

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September 12, 2017

Dear Readers

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:44 am by autismmommytherapist

A few weeks ago I was fortunate enough to have a piece I wrote, a letter to Justin’s future caregiver in a group home, published on the Autism Speaks blog and highlighted in their social media. In it I wrote about my boy’s strengths, weaknesses, and his general adorableness (making that a word). I thanked his future caregivers for their patience and compassion, let them know how much he had been loved during my lifetime. I sent it to my contact at Autism Speaks with the hope that they would choose to publish it, as I think talking about the future for our more severely autistic kids is really important. The truth is though, I almost didn’t send it, and I’ll tell you why. You see, every single time I write about my son’s life after my death, which I believe will transpire in some sort of group home, I get the comments.

And I will tell you readers, some of them are not kindness personified.

I could tell you how this mean commentary about putting my son in a group home (which they never seem to get hasn’t happened yet, he’s only fourteen) ruins my day, or brings me to tears, or sends me downstairs for more chocolate (that last part is always true). But honestly, I’ve been writing this blog for seven years, and I’ve developed a thick skin. I’ve survived a comment about how I could possibly think to “out” my mildly autistic son by bringing him to an autism surfing event. I’ve been told I’m awful for predicting my non-verbal, severely autistic teenaged son will never marry or live independently (please, prove me wrong there, I’d be thrilled).

I was also asked recently if I’d ever heard of Temple Grandin and I shouldn’t give up hope my son wouldn’t eventually end up like her.

Okay, not mean, just incredibly annoying.

I can honestly tell you at this point I don’t care if perfect strangers choose to judge me about where my son will live after his parents’ deaths, and quite possibly, years before that. Most of the time the “judgers” don’t even have a severely autistic child, or are the parents of a “Waltonesque” family where their child’s seven siblings will share in taking care of their brother or sister after their parents’ demise.

And in that instance, I say more power to you, and you should count yourself fortunate. Many of us don’t have that pretty option. I can tell you I don’t.

My severely autistic son will never live with my youngest son, but not because he’s autistic too. Zach, like his brother, is doing beautifully out in the world, but I can you he’s already told me he wants to visit Justin but not live with him, and I know I need to respect his wishes. I’m sure some of you are thinking he’s young (ten) and will eventually change his mind, but I can tell you he won’t. He’s a bright boy and can tell his big brother is a lot of work, and doesn’t see how caring for him full-time will play into his desire to have five kids. Quite honestly, I don’t see how that would work either. We need to know where he is at any given moment in our house, and he needs frequent supervision. He is still on a potty schedule. He has gotten out of our house alone twice, so we need to constantly know his whereabouts.

Justin is a full-time gig. Logistically, I don’t see how living with Zach and the family he’s wanted since he was five would work.

For many of us parents of severely autistic children, a residence for them outside of our homes will eventually be our only option. While I respect everyone’s right to comment as they see fit on either my blog or the Autism Speaks blog, I’m hoping people will read this and think for a moment before they write something derisive about group homes. Truly, I’m not asking this for me. Rail away at me on my blog, get out your aggressions if you choose.

I’m not going anywhere.

But please, before you write a derogatory comment on the Autism Speaks blog about a parent’s choice of living arrangements for the child they desperately love and perhaps wish they could care for until he or she dies, stop and think. Deciding how your severely affected child will live out their last three or four decades without you is difficult (okay, excruciating) as it is. Someone reading a commentary on group home living may just be coming to that point where they can no longer care for their child. Perhaps they’re a single parent, or ill, or just too old to do it anymore. More than likely it is a heartwrenching decision, made with more than a few sleepless nights. Please, think before you write and don’t make it even more difficult for them.

We parents of autistic children need to spend our time building each other up, not breaking each other down.

Thank you.

 

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September 5, 2017

Dear Zachary

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 9:50 am by autismmommytherapist

Dear Zachary,

If you’re reading this letter then your Dad and I have gone to the Great Beyond (not happily, but you know, death and taxes), and of course I had to leave something behind for you.

I always enjoyed having the last word.

First, let me say what a joy it was to be your mom. You were an intelligent, compassionate, funny kid who grew into an intelligent, compassionate and funny adult (your jokes always slayed me), and your dad and I were so proud of who you became. We loved watching you mature, adored your wife (I would have picked her too!), felt so fortunate to watch your children grow to adulthood.

Being their grandma was almost as incredible as being your mom.

I know every decent parent is proud of their child, but I was particularly proud of you. You overcame many obstacles when you were little, from the autism that initially robbed you of your words to the ADHD which made it so difficult for you to focus. With time, hard work (and I like to think a dash of good parenting) you grew into a young man for whom autism was a gift, not a burden. You are proud of who you are- that may be the thing I’m most proud about you too.

I know, I drove you crazy saying this every day, but you truly are awesome.

I know we’ve had many talks about your brother and you may be feeling like this letter is overkill (you often said I repeated myself too often and it drove you crazy, that’s what you get when you have an old mom), but I felt I needed to put a few things into words, so here goes.

First of all, thank you for being such a loving little brother.

I know you two didn’t have a lot in common growing up. I know you wanted a brother or sister you could play with or talk to (you were my miracle “old mommy” baby, sorry but a third child was never in the cards), but you were amazing with him none-the-less. I appreciate the concern you always showed him (even when you told me you thought I was doing something wrong), and your patience when his wants and needs affected your life. I like to think he taught you compassion and patience, so I don’t believe the “good brother” thing was a one-way street. I think you are even kinder in your world outlook because of him, and while you were a gift to him, he was one to you too.

To the depths of my heart I hope you believe this too.

So I’m writing to you today to ask you to keep up that little brother role where you excelled. Your dad and I did the best we could for Justin. We believe the group home we chose for him affords him a safe place to live, and his day program is about as good as it gets. Somehow we were able to craft a good adult life for him, a fact for which we are eternally grateful. However he will still need your supervision, occasional interventions, and your visits.

He will always need your love.

In typical “Mom McCafferty” fashion I’ve left you a list of things I’d like you to address over the next (hopefully) forty years. There will be clothes to buy, and doctor visits to book. There will be body checks to make sure nobody is hurting him.

There will one day be a colonoscopy. I’m hoping they come up with a stunning alternative to that. Good luck.

Mostly my dear son, I simply hope you’ll visit him often (bring food, the people taking care of him are underpaid, they deserve it). I know he didn’t play with you all the years you lived together. I know he never asked for you, or offered to share something of his with you, or even said “bye” when you left the house.

But I know he loved you, from the simple fact of that smile that stretched a mile wide whenever he saw you when you’d been apart, that special smile reserved only for you, his mom, and his dad.

Trust me, it exists.

The truth of the matter is I loved him Zach, just as I loved you from the depths of my soul to my often overburdened heart. I was just as proud of him as I was of you, for conquering his aggression, his sleep and food aversions, to his ability to finally let his ebullient, peaceful nature eventually shine through. I loved him for his hugs that wouldn’t quit and his playfulness with those in his inner circle.

I loved him for his smile.

I loved him with a passion, the way I love you. I have a feeling the strength of it survived my death, and hope you’ll always feel it with you.

I know you’ll be busy, what with the job, the wife, and the grandchildren you’ll be having soon (with five kids you’re almost guaranteed), but please do your best with him, and know your dad and I appreciate it from beyond the grave.

Yes, I’m being dramatic. Along with the last word, I enjoyed that too.

Know I adore you, and remain forever in your heart. You summon my love every time you hug your kids, kiss your lovely bride, or do a good turn for someone in this world. I could not have been more proud of you. I love you, my sweet boy.

Thank you.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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August 22, 2017

The Cure

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

There is so much that is contentious in the autism community; cell phones, vaccines, circumcision causing autism (no, I didn’t make that one up). Even among the issues that create conflict among our group however one question ultimately stands out.

I’m talking about the cure. And not the fun band I’m old enough to have listened to.

I’ve read beautiful treatises arguing both sides of the white picket puzzle fence. Some of the pro-cure people advocate this treatment at any cost, even if it removed their child’s autism completely. Some parents on the other side of the fence say they’d never give their child the “magic pill” because it might strip them of their identity and make them lose their autism.

Not that a magic pill is forthcoming any time soon, but who the hell is right if there were?

I have a hard time believing any pill could eradicate my sons’ autisms (and yes I use the plural on purpose, they are just that different). I do believe their brains are wired differently, and don’t think a pill could change that underlying neurology. I’ve read many beautiful blog posts by other parents who would beg to differ from me, who claim their children would be forever altered, would lose the essence of who they are.

My question to them is, how do you know?

Truth be told, I’ve only ever had two major issues with autism, and both of them relate to my severely affected child, not my mildly affected one. The first deals with the fact that my kid on the severe end of the spectrum has really, truly suffered. There have been sleep issues, gastroenterological issues, eating conflicts, and hell, just plain will-he-ever-be-happy issues. I have read where some parents say “blame the co-morbid disorder, not the autism,” but that has never sat right with me. Maybe the OCD that often torments my kids would not even grace our presence if he didn’t have autism to begin with. The alphabet soup of ASD, OCD, and ADHD may never even have taken up residence in my kids if they weren’t born with autism. I just happen to believe that if your kid is suffering, even if it’s autism, even if it’s not politically correct to go there, parents should want to alleviate that suffering however they can.

That’s just me.

My second issue with not slipping my severely affected kid that pill is that I will be dead for probably close to half his life, and not around to protect him unless I can haunt him from the grave (I’m working on it). If statistics are true he has a large chance of being molested, injured, or raped during his lifetime, and frankly I’m not at peace with those odds. It’s not his being non-verbal that bothers me- it’s his inability to be independent, to stand up for himself, to self-protect. If he could never speak a word but be able to fend off anyone trying to hurt him I’d be completely at peace with his type of autism.

Since I don’t see that happening any time soon, I’m not.

I’ve never had an issue with my boys being autistic. It’s not that I’m so evolved, it’s that I had autistic students when I was a teacher, and many of those kids led just as happy and fulfilling lives (if not more) than their neurotypical peers. My kids are unique and interesting, and I love them to death. I don’t want to strip them of anything that is fundamentally theirs.

But I’ll tell you, if there was a medication I could give my son that would enable him to live on his own and take care of himself so I’m not freaking out on my deathbed, well, sign me up.

And yes, I know this post will piss some people off.

I want my boys to be happy, loved, and safe. Whatever brings them that trifecta is alright with me.

 

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August 15, 2017

Help Wanted

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:17 pm by autismmommytherapist

Last night the two wonderful BCBAs from my son’s private autism school came over for two hours to give me suggestions on how to make Justin more independent with his nighttime routine. I know some of you are rolling your eyes and saying “first world autism problems, Kim,” but hell, their services are free, and it’s important that I make him as independent as humanly possible.

I am very conscious of the fact I won’t be here forever to give him his bath, so the more he can learn on his own, the better.

As usual the ladies came up with some fabulous ideas I will be implementing over the next few months, and when they left, it was nice to know I was doing a lot right.

Even we autism mommies need a reward on occasion.

Just a few years ago I might not have contacted the school to ask for help, as requesting aide has never been my forte as I used to be the person (a teacher) who helped other people.

Not asking for help when you have a severely autistic kid- big mistake.

Back in the day when my son was first diagnosed we lived in the DC area, and most of our friends worked or had just had kids of their own. Despite that fact we did get offers of assistance, most of which we turned down. After all, we were two reasonably intelligent and responsible adults, we could handle this.

Well, maybe not so much.

I’m not one who believes in regrets- a waste of time for something you can’t change. If I had it to do all over again however I would change this. I would take those offers of help, from babysitting to running errands for me to making a Starbucks run (it was just down the street,) and as long as people were offering, I’d take them up on their kindnesses.

We all need a little help sometimes.

So if your child has just been diagnosed, or you’re a few years in, or hell, he’s a teenager, and someone reaches out, just take it. I know, you’ll be worried about what happens when you’re out (it might be awful, but at least you got to go somewhere!). Maybe you don’t want to inconvenience someone if they offer up dinner (trust me, it makes them feel good to help and it’s one less meal to cook, go for it!). Perhaps you’re just too overwhelmed with so many, many needs that you can’t even separate out what you need most.

Make the time to do that. It is so important not only for your child, but for you.

Having an autistic child can be incredibly lonely and isolating. Even if you’ve made some “autistic mommy peeps” you may not be able to sneak away with work and Early Intervention schedules to hang out and give each other support. I will say this- it is integral to your mental health that you get a break, and trust me, most of the people offering really mean it.

Besides, you can glorify their efforts on Facebook later, a win-win for all!

There’s nothing wrong with admitting you’re overwhelmed. There’s nothing wrong with admitting you’re exhausted.

There’s nothing wrong with admitting you’ve run out of wine and chocolate.

Ask for help. And know as you’re doing it you’re not only doing something good for yourself, you’re helping your child too.

Just ask.

 

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August 8, 2017

I Believe

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 10:35 am by autismmommytherapist

The other day in my seventeen minutes of free time I happened to run into Barnes and Noble, and as usual I headed back to the kids section to see if anything new was out. As I perused the shelves of books ranging in subject from ADHD to bullying my eye stopped on the autism shelf (yes we merit our own shelf), and I had to laugh. Sitting right next to Jenny McCarthy’s Louder than Words was John Elder Robison’s Look Me in the Eye.

This may be the only time in recorded history that these two individuals will ever be close together on anything.

The placement of the books brought to mind the many divisions that still exist within the autism community. To vaccinate or not to vaccinate, ABA as a valuable tool or a torture device. Autism as a different neurology or brain development gone awry.

To cure or not to cure, that is the question.

And I realized as I stood there contemplating the fact that these two books were actually touching each other that I can honestly say twelve years ago when my eldest of two autistic kids was first diagnosed that sometimes I was confused about what to think, what to try with him to alleviate some of the very distressing symptoms that came along with his severe autism.

I find, more than a dozen years later, I am no longer conflicted about much anymore. Here is my “state of the union.”

I do believe autism is an alternative neurology.

I believe that sometimes it is a gift.

I believe it’s not a gift any time either of my sons suffers.

I believe both in assuming competency and being realistic. My eldest has intellectual disability. There are skills most of us have that he will never master. Accepting that does not mean giving up on him.

I believe that ABA done right can be an invaluable tool.

I believe ABA in the hands of the wrong practitioners, as with any therapy, can have disastrous consequences.

I believe my youngest is not disabled by autism.

I believe my eldest son is.

I believe to my dying day I will wish for a treatment that would enable my eldest boy to live independently, not strip him of his autism, but enable him to care for and protect himself.

I believe in my right to write about my family’s struggles and triumphs.

I believe autism often has severe financial, emotional, and physical effects on other family members as well as the individual. We family members need to take care of ourselves too.

I believe both of my boys are fabulous human beings and that the world has much to learn from them.

I believe in remaining open to everyone’s opinions, autistic or not.

I believe being autistic is not the same as raising an autistic child.

I believe most of us parents of autistic children are doing the best we can.

Most of all, I believe in supporting one another, autistic and non-autistic alike in an effort to help our kids be the best they can be.

I believe.

 

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