February 13, 2018

Love

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 12:13 pm by autismmommytherapist

I love you, my two littlest loves.

To my eldest, I love you for your courage, your kindness for your affectionate nature.

I love you even for your stubbornness, your needs that must be met, am grateful for your myriad ways of expressing them.

I love you for your passion for horses, the gentle way you rub your host’s nose after each session, how you allow your ride to nuzzle you and share his love of you as well.

I love you for your laugh, that rare sound that stops an entire household in mid-action to come running to see what has summoned such joy from an often serious child.

 I love you for your need for hugs from me, morning and night, and that sacred time we spend each day strengthening our connection to one another.

I love that you made me a mom.

To my youngest, I love you for your courage, your sense of right and wrong, your tenacity of spirit.

I love how you fight for those you love, never retreating from taking care of your own.

I love how you love little kids, even when I promise you your dream of a younger sibling is really quite impossible.

I love your jokes, but even more I love the joy you receive from telling them.

I love even your millionth question, because it illuminates your radiant mind (which often sends me running to Google).

I love how you look out for your big brother.

I love you, my littlest loves.

Happy Valentines Day!

 

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February 6, 2018

Back to Normal

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

He gently snores in recovery as I adjust the blankets around his bare shoulder, the rough cotton gown that afforded him some modicum of privacy having slipped down his chest. I carefully watch the plastic apparatus in his mouth that keeps his tongue from blocking his airway as he breathes, see him slowly working his way out of slumber. We may be here for minutes, we may be here for an hour, as we see how long it takes for Justin to slough off sleep after his sedated MRI. My husband is busy with paperwork and discharge instructions so I use the time to sit, watch my boy, and assess our day and how it all went.

All in all, a banner day for my severely autistic boy.

This is not to say we didn’t have our rocky moments. My son is religious about keeping hydrated, and of course only a few sips of water are allowed the morning of the procedure, which was challenging. I was thrilled to find out last week that the hospital didn’t have any water fountains, as these are Justin’s “hydration stations” everywhere we go (we actually build in extra time on excursions just to accommodate his liquid cravings). Even though he was verbally requesting “juice” and “water” every thirty seconds I thought we’d won when my son took off down to the other end of the waiting area, having discovered a door cracked open maybe six inches wide to a room sporting a sink and cups for staff. A super fun ten minutes ensued where I had to body block the kid who weighs what I do now as Jeff continued to register, but eventually he relented after much protest and let the kind nurse lead us away to our second holding station.

This one did not have a sink. It’s sad what makes me elated these days.

We had another moment of semi-panic when they told us his procedure was scheduled for ninety minutes later than they’d rescheduled us for three days before (there was no way we’d keep that kid from water for five consecutive hours), but the staff straightened it out for us. Justin compliantly stretched out on his gurney, and they even let me lie next to him as they escorted us down the labryrinth of hallways that led from the children’s hospital to the main hospital where they do sedated MRIs.

Justin thought it was funny that Mommy got to lay down with him. I found it so relaxing I decided I wanted one for Valentines Day.

He was a champ through the whole thing. The staff let me sit next to him as they administered the mask with the gas, which he didn’t like very much but tolerated. We sang him songs to help him slide into sleep, and within minutes he was out as they carefully lowered him onto the table that would send my boy into the tunnel to check for any abnormalities in his brain structure.

I admit, I found myself tearing up at his courage as I left.

So for now I sit, and watch his chest gently rise and fall, see him in a static state which he only shows us at home when he’s unconscious. I think about why we’re here, how this test probably won’t give us any answers but will just rule out the scary stuff that my mommy gut says he most likely does not have. I think about these “staring spells” he’s been having since October that have dissipated slightly in number and intensity, episodes that rob him of his joy in the world and make his mother more worried than she usually is. I think about how much I want answers, but how I want treatment more. I think about how I can’t help but project how these episodes have such far-reaching repercussions- if we don’t eradicate them will they keep him from attending camps, participating in a day program after he turns twenty-one, prevent him from living in the group home he will certainly reside in when my husband and I are gone.

Yes, I’m a planner.

I let these thoughts course through me, gently discard them from my present state as I’ve learned to do to keep my sanity. Instead, I focus on this- that we have wonderful doctors working to help him in multiple disciplines. That we have seen slight improvement in the past several weeks. That this might not be seizures, or autism-related catatonia- it might just be extreme OCD, which is not in itself life-threatening, although it can be way-of-life threatening. I remind myself that every single challenge Justin’s multiple diagnoses have put before us we’ve met head on, and if not conquered, have ameliorated so that he has a good life.

Yes, I’m proud to say my severely autistic son has a really damn good life.

My mind wanders to the other reason I want answers, which is that when Justin is enmeshed in these episodes, nobody can witness his true, loving self. I am not unaware as to how my son presents to the typical world. When we are out and about there is a serious quality to him, no smiles, no eye contact, just a burning need to get to his destination or leave a place or acquire a carb (that last one I can truly relate to). We’ve taken him to his brother’s cub scout events, to karate, on errands, and fun destinations where routine must be followed and little joy is shown, although I know in my soul he enjoys the fun places. With one eye watching him and the other trained on those around me I know how he appears- devoid of emotion and utterly fixated on his goal. There is a hardness to him, a purpose that must not be denied.

He does not appear connected to those around him at all.

But with those he loves, he is, oh how he is. There are countless kisses for me and his father throughout the day, “forehead kisses” for his grandmas, smiles for the staff at school. We need to build in time to hug every morning before school and every night before he sleeps. Every single day there is a gesture of love for no reason, accompanied by a smile and that intense eye contact he’s always bestowed upon me.

And the thing is, these “spells” are robbing him of these moments, and I want it to stop. I want it all back, the connectedness, the kisses, the gift of gaze we feel so lucky to be witness to.

I want him back.

He stirs, and one of the many compassionate nurses who have helped us today comes quickly to see how he’s doing, telling me it may be a while longer as he fights to come to consciousness. She asks me questions about him and his life, and I regale her with how well he does at school, his passion for horses, his affectionate nature. She nods and I know she believes it all, and somehow it is a comfort to me.

I always want the world to know his generous soul.

Soon we will be discharged and will make our way home. There will be laundry to fold, a cub scout den meeting to attend, lunches to make. Based on other minor operations Justin’s had I anticipate he will be back to himself in a few hours, and life will go on.

And my silent prayer to the universe asks that this boy returns to his normal soon.

 

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January 30, 2018

Change

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:36 am by autismmommytherapist

“Zach, Mommy’s taking care of Justin” I call to my littlest love as he once again requests juice and pretzels, a snack he is perfectly capable of getting for himself (but it’s so much more fun to ask mommy to get it for him). I turn to go back into Justin’s bedroom and find my son, who moments before was laughing with me, is now prostrate over his bed, bent in half, eyes fluttering, lost to the world. It’s a position we’ve seen him in dozens of times daily the past two months, and it happens in an instant. One moment he’s engaged- one moment he’s lost to us.

My pain on seeing him like this has not diminished over time either.

We are still not sure what is going on with Justin, despite the expert advice of two different doctors (welcome to autism and all its accompanying fun). We have begun weaning him off one medicine and instituting another, but the progression of this titration will take almost eight weeks, and then we will have to wait another week or two to see if this switch is really working for him.

Have I ever mentioned that waiting is not my forte?

We are doing everything we can. We have tests scheduled. We have his wonderful school taking data on his “spells” so that we can prove he’s getting better, worse, or staying the same. We’ve told his therapists and bus drivers so that they know what’s going on. We’ve talked to Zach about it and let those in his world know what’s going on in case he seems upset. We’ve dotted “I’s” and crossed “T’s”.

 And still, there’s that waiting.

We’ve conquered so many challenges with Justin over the years. Insomnia has been put to rest (hah!), his aversion to eating anything other than a carb has been subdued (he eats broccoli now!), and aggression is mostly a thing of the past. I attribute most of our successes to Justin himself. He is a child who loves to be at peace with his world, and when not battling the challenges autism has brought his way he is one of the happiest people on the planet.

And yes, I know how lucky we are.

We have not changed our mode of attack on whatever is besieging our son over the years. We take a broad approach, get second and third opinions, and ask anyone and everyone who knows and works with our boy for their advice. Generally with this information we’ve been able to piece together a plan, and up until a few months ago, this strategy has worked for us (and we hope still will work for us). I don’t plan on changing our methodology any time soon.

But I did realize a few years ago that one thing I had to change was myself.

I try to take care of myself, I really do. While I won’t be gracing the Sports Illustrated Swimsuit Edition any time soon I’m in reasonably good shape for a woman of a certain age (!). I exercise, I eat decently (chocolate intake excluded), and I try to carve out time for myself. I knew my family was under considerable stress much of the time, but I’d accustomed myself to living that way. Or so I thought, until the day I went to my GP for an ear infection and they took my blood pressure, freaked out, and wouldn’t let me leave the office.

Good times.

I realized while talking with my doctor that there wasn’t much I could change externally about my life. Justin’s severe autism was not going away, and there would always be more challenges. I was already taking care of myself in terms of sleep, diet, and exercise (most of the time). There wasn’t much on the outside that I could do to reduce my stress levels.

But the inside, that was another matter.

I’m a planner, have been since I was a little girl, and there’s just no changing that about me. When dealing with Justin’s autism I’ve often found myself needing a plan B or C, and having those alternatives has served us well. But the truth is no matter how well prepared I am with him, sometimes I’m still blindsided by a meltdown or resistance from my son who is now taller than me.

In other words, even I can’t control everything.

But what I have learned is that in some instances I can control myself. Justin’s spells often come at inopportune times, like when the bus has come or I have to get him out of the house for an appointment, or when I want to get him into bed so I can take care of his brother. I’m trying to practice my own advice these days, because when he’s in these episodes the only thing I can do is wait it out.

Again, not my strength.

But this is becoming my strength, because I need to find that calmness, that release of control, for my health, both mental and physical. I remind myself that these episodes always end. I remind myself that so often things with autism are cyclical. I remind myself that I’ve built in extra time for just such an occasion as this.

I remind myself to breathe.

And he’s always come back to me my boy, and by letting go of as much of my anxiety over this that I can the mom he’s coming back to is happier, healthier, and more whole.

I can only control myself.

And hopefully, I will continue to find peace.

 

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January 23, 2018

Keeping Things Stable

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:51 pm by autismmommytherapist

“Mommy, Justin’s praying again” my almost eleven-year-old tells me as he heads upstairs, and as I look behind me in the foyer I see he’s right. His older brother Justin, who is fourteen and severely autistic, has been having “staring spells” for the past two months, and in order to reduce our youngest son’s anxiety levels over what his brother is doing we’ve called it “praying.”

Honestly, that is exactly what his parents are doing.

Since Zach is the youngest in our family he has grown up knowing only what it’s like to have a severely disabled older sibling, and to some extent for Zach this atypical behavior is normal.

Our normal.

Zach has seen a lot of difficulties with Justin over the years. His elder sibling has had bouts of aggression and extreme OCD behavior that have been very disruptive to our family life. His dad and I try our best not to let Justin dictate our lives, but sometimes it’s impossible not to give his needs precedence. Fortunately we’ve been pretty successful at keeping things stable for Zach- here are some of the ways we’ve been able to do that.

1) Talk to your child about what is going on with his or her autistic sibling. Whether they’re talking to you about what’s going on or not, they are certainly aware if things are stressful in your home. Keeping open the lines of communication is key.

2) If your neurotypical child has an activity to go to, have a back-up plan if your autistic child might thwart that plan. Over the years I’ve created a network of people who can ferry Zach back and forth to activities. I don’t hesitate to call upon them if my husband isn’t home to watch Justin and I’m not sure I can get him in the car to take Zach somewhere. People generally like to help, take them up on their offers.

3) Research possibilities for your other child to talk to a professional. Sometimes the behavior your autistic child’s sibling will witness from your autistic child can be confusing and disturbing, and they may not want to talk to you about it. Having that professional’s name handy if the time comes for your child to talk to someone will be very helpful.

4) Plan a day with your child without his or her autistic sibling. We have one day a year where my husband and I do something fun for an entire day, just the three of us. Our youngest looks forward to it every year, it’s a great chance to connect.

5) Make sure you and your spouse get a break from autism. The best way you can help your autistic child’s sibling is to be happy, healthy, and present for him or her. Make sure you are taking care of yourself as well as your children.

I hope these suggestions help!

 

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January 15, 2018

Help Yourself

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 1:46 pm by autismmommytherapist

It’s been a rough few months with Justin, our severely autistic teenaged son, but even as I’m writing this I know it could be worse, much worse. In my idle moments (there aren’t many, but what woman today has a lot of these) I surf through comments made on Facebook support groups, and despite what’s going on with my son I know we’re still lucky. In the past few weeks I’ve read comments by parents who are watching their child’s self-injurious behavior and feel helpless. I’ve read the despair of parents witnessing their son’s ramped-up and returned aggression who feel his medication isn’t working.

Despite Justin’s “spells” or possible seizure episodes my son is still here, still gracing us with his hugs and smiles multiple times a day, still experiencing joy in his life. No matter what the next few weeks bring with tests and doctors’ visits, I still have this.

Although it’s difficult to watch him go through these periods where it seems he’s no longer connecting to our world, I know as an “autism mommy veteran” that there could be a solution here, that we might be able to find the right combination of meds to make these episodes stop. I also know from watching him cycle through many disturbing behaviors over the years that they might just stop on their own.

In other words, as we ring in the new year (and may it be better than the last one!) there is hope here.

The truth is, I can remember a time (well, honestly, there have been several) where I was so overwhelmed I could not conjure up any hope. Going to that dark place didn’t help me and it certainly didn’t help my boy, but in the early days of his diagnosis it seemed impossible to feel any other way. At the time we were living hours from any of our relatives and they all worked anyway, and we lived in a state that provided us with only eight hours of therapy a month (!) for our son who had an official autism diagnosis. I immediately got trained in ABA and worked with him thirty hours a week for the next fifteen months until we moved to the haven of New Jersey and its excellent Early Intervention system. There were so many times during that difficult period that I felt I was losing myself, and I wished I’d known some parents with older kids who could give me some advice.

And that’s why I’m writing today.

Whether your child has just been diagnosed, is just starting school, or is struggling through a difficult period, I’d like to share strategies that worked for me in the past that I wish I’d executed fourteen years ago, not just in recent years. I hope these help!

1) If at all possible, I recommend trying to get your son or daughter an appointment with one of Autism Speak’s Autism Treatment Networks. We’ve been bringing our son to the one in Philadelphia for eight years, and they have been cutting edge with medications and strategies to make his life better. Plus it’s always good to have a second opinion on how your child is doing.

2) If you are the primary caretaker of your autistic child, please make sure you take care of yourself. Strive for a few hours every week. Make those doctor’s appointments you’ve been putting off. Get a sitter so you can have coffee with a friend. It’s imperative that you take some time for yourself so you can remain strong for your child. Getting out is good for your health!

3) If you can, join a support group with at least a few other parents with kids your child’s age. Parents can be invaluable resources, especially local ones. These connections could prove to be invaluable.

4) Ask for help, ask for help, ask for help! Whether it’s your neighbor or a friend or a relative, take people up on their offers. Even if they just watch your child so you can run an errand, this break will really help. If you’re nervous about leaving your child alone with someone else have the person offering assistance “shadow” you prior to your leaving him so they can see your routines. People want to help, and while it may take some planning it’s important that you build a network of people who can come to your aid when you need it.

7) Plan time for you and your significant other to take a break together (this will be easier if you create that network!) Raising a child with autism has its gifts, but it can also be tough emotionally and physically on parents. Get that time together to reconnect if you can.

8) If your school district has a special education PTA try to join. This is another way to make important contacts and benefit from parents’ experiences. Plus it helps to be surrounded by adults who understand what you’re going through.

9) Make friends with other parents whose children have your child’s level of autism. I’ve made friends with parents of children with both severe and mild autism, and while I’ve benefitted from both connections sometimes I just need to vent to another parent who gets the severe side of the disorder. Make sure you seek out positive people, they are the ones you will benefit from the most!

10) Every night write down one good thing that happened that day. I will be honest with you, some days it’s just been “He smiled once today.” I have found trying to end each day on a positive note, no matter how small, sets me up for a more positive tomorrow.

I hope these suggestions have helped, and a happy new year to all of you!

 

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January 8, 2018

My Son’s Autism Diagnosis

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 2:56 pm by autismmommytherapist

Over the years people have asked me about how and when Justin was diagnosed with autism. My boy got an official diagnosis at seventeen months from a developmental pediatrician, received a spectrum diagnosis at a tender age that was very unusual back in 2004. I remember the pronouncement as being anti-climactic, as just a month before our son’s pediatrician had thrust a number of incomplete articles into my hands with the word “autism” prominently in the title, after which he subsequently almost shoved us out the door.

Yup, that was a pretty good clue to what was going on with Justin right there.

But the truth is my mother’s inner voice had been wondering about my son’s development since he was six months old. Sure he met his milestones, and our pediatrician was not concerned about him at all. It was more his demeanor (constantly cranky), his fairly frequent projectile vomiting that just didn’t want to abate, and more importantly, there was the spinning.

When he turned six months of age the spinning became his favorite pastime.

I really noticed it when Justin started sitting up, and instead of playing with his toys “correctly,” he would try desperately to rotate them across the floorboards of our home. I would watch him in deep concentration as he vacillated between putting everything in his mouth (which I expected him to do) and trying to make everything he touched a revolving missile. Still, he did enough “normal” things like babbling, making eye contact with us, and laughing at our antics that our pediatrician was content with his development for the first year of his life. It was only at sixteen months when I brought him in for a second visit following his last twelve month check-up that our pediatrician “fessed up” that he had had concerns about Justin’s development since his one-year check-up, but hadn’t wanted to say anything in front of my husband, because “the fathers don’t take these things well.”

I know. I couldn’t make this stuff up if I tried.

I remember walking out of that sixteen month visit feeling hollowed out, numb, and terrified all at the same time. I was enraged that he’d had concerns and not said anything four months prior- after all, I had only come in because Justin’s reflux was worse, was he planning on waiting until his eighteen month checkup to tell me?

And further still, would he have said anything if my husband had been there?

To be fair, my husband had disclosed his slowness to talk at our one year check-up, and perhaps our pediatrician was thinking “like father like son,” however he should have said something after we outlined all our concerns, no matter how worried he was about how my husband would “take it.” I remember feeling we had lost four months to get the help our boy needed, even though I knew that being diagnosed so early would still be a help to him. Justin was our first child- perhaps if I’d had a sibling to compare him to I would have pushed harder, but my experience with children was limited to the fourth graders I’d taught, not infants. Plus, he was so “related” to us, loved to be held, had no issues looking his parents straight in the eyes. I didn’t know much about autism at that time. At first it was hard to believe our affectionate child who connected with us frequently had it.

But he did, and he does. And I am grateful no matter how the divulgence came about that we knew sooner rather than later.

I’m writing this post today because I know that somewhere out there there is a mom or a dad with an infant or toddler who is concerned about their child’s development, but scared too. My advice to anyone in this situation is to get a referral as soon as you can to a doctor at an autism clinic, or to a developmental pediatrician. The truth is it can take months to get an appointment (when we moved to New Jersey it took us six months to schedule one), months that your son or daughter could be receiving help from Early Intervention.

Your child will have autism, or he or she won’t. It’s better to know and to gather the resources to help him or her. Intervening early is about the only thing the entire autism community agrees upon when it comes to autistic kids. Try to take advantage of the resources available to you as early as you can. Plus, if your child is almost school age (three) it can take months for your district’s child study team to test and evaluate your son or daughter. Start the ball rolling as early as you can.

We did, and I am convinced it made a huge difference in our son’s life.

Justin is almost fifteen, and still on the severe end of the spectrum. He has his challenges, as I imagine all individuals on this end of the spectrum do. He uses a device to communicate, and will never live independently.

That said, he could read at three, is one of the happiest people I know, and loves his life.

He is our joy.

My wish for you and your child is that you get the information you need, the resources that can help, and the acceptance to be able to move forward with your lives if an autism diagnosis is warranted. There may be times when you feel scared or overwhelmed. Reach out to family and friends, and use the Autism Speaks website as a resource, and consider visiting one of their Autism Treatment Network Centers. If your child needs the help you will look back and be grateful you pushed forward, no matter how hard the initial steps were to take.

And in this new year, I wish all of you the best of luck and remind you to take care of yourselves too.

 

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January 2, 2018

Hope for the New Year

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

As I sing the tune to “Whistle While You Work” which just played on my son’s DVD I see his ebullient smile as he gifts me with his gaze, and as I wrap him tightly in his towel I pull him in closer for a hug. These precious moments of connection have been fleeting in the last few weeks as Justin, my severely autistic teenager, has been having seizure-like episodes, black holes in time that rob him of affect and joy for minutes at a time. I believe his neurologist is doing all he can to remedy the situation, and in the past few days I’ve allowed myself hope that the new medication we’ve put him on may be kicking in.

I’m pulling out the prayers on this one.

Until recently I felt like we were having “first world autism problems” with Justin. Not too long ago I had the BCBA from his school do a house call to help me foster independence with chores like dressing, brushing teeth, etc. Then October hit and all my fancy New Year’s resolutions of raising the bar on what my boy can do for himself have flown out the window.

Quite frankly now I’m just focusing on getting back my boy.

I take those New Year’s resolutions seriously when things are going well, craft a half dozen of them for each of my sons, and realistically know I’ll probably only get to half of them before the year is through. It is important to me to always look to the future for them both, to anticipate their needs, to not just focus on the endless cycle of homework/horseback riding/karate/church that seems to take up so much of our time. And while it’s been a year for struggle chez McCafferty, what with almost losing our house to fire on the 4th of July and watching my eldest struggle these past few months, I still have hopes for 2018, and I will share them here with you.

I have hope that Justin’s team of dedicated doctors will find a solution to this latest challenge in his world and will be able to bring him relief.

I have hope that he will continue to love his life.

I have hope that my youngest will start doing his chores without my having to harass him (this may be our biggest struggle).

I have hope that my eldest’s hard-won words will keep flowing in 2018 and beyond.

I have hope that their father and I will continue to turn to one another for strength.

I have hope that my youngest will continue to revel in the joys of friendship.

I have hope that our government will make our community a priority.

I have hope the new year will bring peace, hope and fun to all our family and friends.

I have hope the world will look on autistic people not just with acceptance, but with admiration for all of their struggles and successes.

I have hope that whatever challenges this family faces in the future, I will still keep hope alive.

Happy New Year to all!

 

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December 18, 2017

Getting Help

Posted in Life's Little Moments, My Take on Autism tagged , , at 2:47 pm by autismmommytherapist

I am always thinking about ways to make Justin’s life better, to give him a more independent existence. I’m hoping this goes on my tombstone along with “he ate broccoli and lettuce and liked them.”

It’s good to have goals.

In an effort to bring about said independence I was able to call in the “autism squad” from Justin’s private autism school to do an assessment of his (and frankly, my) skills to see where we could improve.

Yes, I know, these are “first world” autism problems.

Before you stop reading and dive into “her kid can’t be severe she has NO idea what it’s like here” I’ll tell you my eldest son is in fact severe, from tip to toe. Justin has at best five intelligible words. His potty training techniques still need refreshing on occasion. In the past sleep, aggression, and an aversion to anything not a carb ruled our lives. He was severely affected, and still is.

 He’s also affectionate, clever, and most of the time one of the happiest children I’ve known, and I taught for a dozen years, so that actually means something.

His parents, teachers and therapists labored about thirteen years to help him reach the point where we have “first world” autism problems, such as the struggle I was having getting him out the door in the morning (honestly, what’s more reinforcing, getting on a bus or playing “Up” on a DVD player?). At Justin’s school parents are able to request free consultations from their excellent BCBAs (yes, I said free!) for up to eight sessions at a time, either to work on major issues as I’ve outlined above, or simply to improve quality of life. Except for his reluctance to board his daily yellow chariot we are in a great place with Justin (yay ABA and medication!), and I felt the need not only to change our routine from me cajoling/begging him to leave the house, to a joyful boy leaving behind a movie or the computer to go to his happy place- school.

Yup, I’m pretty sure he likes it there better than his house. I try not to take it personally.

My son’s lovely BCBAs advised me on some ways I can help him be more independent in his morning routine, but mostly they came up with an incredibly clever plan (I knew they would) to help ease him out of the house in the mornings.

The plan looks like the photo above.

You’re all autism parents. You get the drift.

When they first outlined their idea of taking pictures of all of Justin’s morning activities, creating a book, and letting him flip through the pages to each new exciting daily adventure, I honestly thought it wouldn’t work.

Actually, I thought “not a chance in hell,” but I’m polite so didn’t share that exact sentiment.

The dynamic duo came over at 7:00 AM one morning (yes I said AM) and stayed with us from the moment Justin rose from his bed to the moment he bounded onto the bus (of course that day he went without any problem). They took pictures of everything we did to get ready for his day job (he found this highly amusing), then went on their merry ways. A week later they came back (yes, again at 7:00 AM!) and we took the book for a test drive.

He loved it. It was as reinforcing to him as a plate of warm Philly pretzels and a Baby Einstein video on his DVD player, and that is high praise indeed.

It’s been two weeks now, and I haven’t had one single morning where I’ve struggled to get him on the bus. The last two pictures in the book are of his backpack and the bus, and when he gleefully turns to those pages, he often gifts me with a knowing smile. When I show him the “bus page” he now walks readily away from his movie choice du jour, and heads right to our front door.

Victory. Yum.

It will take me some time to implement all of their recommendations for increasing his independence (they say it takes a thousand trials to create a new habit, at fifty I’m finding it takes a million), but I will perservere. Justin’s personal consultants have reminded me that he’s fourteen and he can’t sit on my lap forever for his Eric Carle bedtime story (this one will be a challenge), but other changes will be easier to master over time. Gaining independence is not just a learning curve for my boy- it’s one for me too. It’s something we autism parents need to constantly keep on the back burner (when not fighting insomnia, aggression or other all-consuming issues).

I don’t know when I will no longer be living with my boy, but at some point that day will come. I want him to be as prepared as humanly possible.

I want to be as prepared as humanly possible too.

So here’s to creating new habits, and thanks to his wonderful consultants!

 

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December 11, 2017

Keep Hope Alive

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 3:35 pm by autismmommytherapist

I scooch Justin over in his big comfy chair so we can snuggle, and I can hopefully reduce the rocking that might make the test he’s undergoing invalid. He smiles at me through a web of plastic, looks delightedly into my eyes as The Polar Express plays on his DVD player. It’s a favorite of his, and I brought it and an armada of others in an effort to keep him occupied while a lovely technician records the workings of his brain. We are here for almost an hour-and-a-half but the activity we wanted to record, the staring and eye fluttering and hand shaking tremors that are so disturbing, happened in the first ten minutes, and I’m grateful the technician was so speedy in her ministrations. I knew going in that he might not exhibit the behavior we’re concerned might be seizures, that the test might be for naught.

The truth is I no longer look for miracles, but I do want answers.

This is not our first time at the EEG rodeo. We were here in 2012 for this exact procedure, then at CHOP in 2013 for an overnight, which I truly hope we will not have to revisit. Both visits pronounced him seizure-free, including a doctor at CHOP who growled at my husband early in the morning that “he didn’t know why we were even here, he has autism,” (who knew, thank God someone finally figured it out!). I am hopeful when we get our neurologist’s pronouncements next week that his status will remain the same, however I’m not sure that will get us much closer to an answer.

When he enters into these trancelike states, it is impossible to divert him. We can’t get him to put on his shoes and leave the house for the bus. We can’t get him to bed. We can’t get him to eat. We can’t get him to leave the house, even for his beloved horseback riding. He is displaying the behavior at school, which makes it difficult for him to transition from activity to activity. More importantly, we lose the essence of him, the sweet smiles and desire for connection our boy displays so readily.

Much more than I want answers, I just want to help my boy.

I could tell you that I’m sad and I’m worried about my son, and that would be true. I will also tell you that after fourteen years of autism in the house that I am finally able to acknowledge that anxiety but not let it destroy me. I have learned over the years that so much of Justin’s autism and OCD is cyclical. I have taught myself how to pace my concerns, take everything one test at a time, one evaluation at a time, one call at a time. I will tell you that it has saved my sanity.

And with autism, it is really really important to retain your sanity.

By the end of the week there will be a report sent to his neurologist. By early next week there will be phone call or an email to me discussing the findings, and a plan will be put into place. There may be answers. There may not. The plan may take weeks or months to fully play out, and we might be in the same place we are now. I’ve learned to accept that fact too.

That one’s still not easy for me.

The other reality is the behavior might just go away on its own, as so many of the things that have made raising Justin difficult have disappeared over the years- most of his aggression, his aversions to eating and sleeping, his perennial discontent with the world around him. I know for him I must have hope that this too shall pass.

Hold onto that hope as tightly as you hold onto that sanity.

I know some of you reading this may be going through difficult, even excruciating times of your own. Perhaps your child is hurting himself or others. Perhaps her words have disappeared. Perhaps he has stopped eating. Perhaps you worry he will never sleep again.

I remember those sleepless nights very well.

If you only take one thing away with you when you leave this page, let it be this. Along with death and taxes, the only other sure thing in the universe seems to be that autism is cyclical in its manifestations. With a teenaged severely autistic son in the house I feel somewhat like a veteran at this point, and both in my experience and that of my friends with adult autistic children I can honestly say behaviors come and go.

So if you’re struggling, hold onto hope that this too will get better, that the situation is temporary, not permanent. Keeping despair at bay as much as possible will help you keep a more clear perspective on the situation, which is invaluable both to you and your child. Ask for help when you can. Keep yourself as healthy as possible.

And remember hope.

 

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December 8, 2017

Our Bond

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 11:29 am by autismmommytherapist

He runs into the house from his school bus and stops dead in his tracks as he witnesses the magic that is my living room’s winter wonderland. Every inch is hosting a light, a singing plush toy, or an animated Christmas icon, and I know his mile-wide smile is for the tradition of this spectacle, but also it’s also comfort as he engages in a routine that happens every year.

And oh, what a routine it is.

He throws off his sneakers with glee, rips off his coat, and heads, right to our “skatey pond” comfortably ensconced on a tiny table brought out every year just to be its host. He switches it on with joy as my younger son and I look on, all of us listening to the familiar refrain of “Deck the Halls” as my eldest rocks gently back and forth.

His next move stops my heart.

For years this has been a one-man-show with a few brief moments of interaction with me. This year he walks over, grasps my hand, then takes his brother’s.

He has never once initiated this connection.

The three of us form a tight circle, an unbreakable bond as we share in his joy. He gifts us all with his gaze, beaming at our shared love of holiday classics, reveling in the touch of two of the people he loves most in his life.

It is, simply, magic.

Once again I am reminded that to truly connect with my son with severe autism I must share in what delights him, not what I think should delight him. In his toddler years it was water running from a faucet, his pre-school years repetitions of his favorite Eric Carle books until I had them memorized by heart. His elementary years I spent watching him replay scenes over and over on his DVD player, smiling at me in his joy, waiting for my smile in return. Over the years I have learned to immerse myself in his world, and I have been continually rewarded by a strengthening of our connection, a deepening of our bond.

The music ceases and he moves on; the moment is gone. My youngest is thrilled his big brother initiated “play” with him, but after a brief hug for me he moves on too. I am struck that learning how to reach him is perhaps the single most important thing I have ever done for my boy, has been instrumental in his ability to trust, to comply, to deeply enjoy the world around him.

I will forever search for ways to meet him in his world.

I will never stop.

 

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