May 14, 2018

Happy Birthday Boy

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

Last week you turned fifteen. It happened to be field day at your school, and your smile when you saw me waiting for you to perform was magnificent.

That smile carries me many days.

I usually have a variety of emotions on your birthday. I always take time to remember the first moment I heard you cry and held you in my arms- my firstborn, bright with promise. It took about three years and a lot of doctors to get you here, and your dad and I were beyond ecstatic. Your arrival made us a family.

It launched me into the role I was born into, if you believe in such a thing.

The reason I’m ambivalent on your birthday has nothing to do with your label, or even the dreams I had for you when I was still hosting you. I’m mostly past feeling sad that you will never go to college, marry, or enjoy the trappings of a more “conventional” life, because in my mother’s heart I know you don’t miss these things. You are truly happy with your DVDs, your YouTube videos and your hits of Baby Einstein. When not in the throes of a catatonia episode you are blissfully happy. It is more than enough.

It is almost everything.

No, I’m not ambivalent on your birthdays because of you “now.” I’m ambivalent because of your future. You see birthday boy, your mom reads a lot and talks to many people about what’s coming down the pike as you enter your transition years.

By the way just yesterday you were snuggled into a perfect fit in my arms, so how did this happen?

Some people call post-21 the cliff (or the abyss, it depends who you talk to).

Some say they’ve been able to create fulfilling lives for their adult children.

I want you to know with every inch of my soul I’m shooting for the latter.

I also want you to know that last week I did something different- I pushed that ambivalence down, lived in the moment (!) and just reveled in who you are, did not imagine who you will be.

I’m very proud of myself.

You’re strong, mercurial, funny, kind, smart and abundantly affectionate.

Your hugs are the best thing in the universe.

I love you with every core of my being, and I will fight for you with my last breath.

You are my heart.

Happy birthday to my not-so-much–a-boy anymore.

I love you.

 

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May 7, 2018

The Space Between

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 10:05 am by autismmommytherapist

Dear Moms,

If you’re reading this in your voluminous amounts of spare time, perhaps your son has just been diagnosed at the tender age of two and you’re overwhelmed by where to go next. Maybe your teenaged daughter, whom everyone assured you was just shy, is now sporting the ASD label. Perhaps after years of therapy and (literally) your blood, sweat and tears you are realizing your little boy is destined for the more severe end of the spectrum, despite all your efforts. Maybe your son is aging out of his school entitlement, and your world is now consumed with SSI and guardianship and praying like hell that day program down the road will not only take him so you can work, but that your boy be willing to stay. Perhaps your child has just hit puberty- enough said.

A lot of “maybes” here, but I’m certain of one thing- you are very, very tired.

Maybe you’re not going through a major milestone, but instead trying to figure out how to get him to eat, to sleep, to leave the house without screaming, to stop pinching you every time you need him to make a transition. Perhaps you’re trying to figure out how you can convince a sitter to stay with your five-year-old so you and your significant other can remember why you got married in the first place. Maybe on top of autism and OCD and anxiety your girl has just received another co-morbid diagnosis, and you’re trying and failing to summon up the strength to educate yourself once again on yet another disorder.

Perhaps you just want to scream every time someone tells you they don’t know how you do it, as if you had a choice.

Fifteen years ago this week my husband and I began our own “autism rollercoaster” when our beautiful son Justin was born, a much-wanted and longed for baby. I would start to have concerns about his development when he was just six months old (he hit his milestones but spun everything in sight), would have those concerns validated at seventeen months when he received his PDD diagnosis which would morph a few months later into a plain old ASD label. Five years later our eighteen-month-old son, who unlike his brother had developed typically until then, would regress before our eyes after two back-to-back illnesses, losing his speech, developing a rash all over his body, and most significantly losing the very spark that made him who he was. Over the last decade-and-a-half we have seen our boys labeled with autism, OCD, ADHD, and most recently for our eldest, catatonia. We have endured insomnia, refusals to eat, binge eating, anxiety, and aggression.

Here, it has not always been “good times.”

Having been in the trenches so to speak for the last decade-and-a-half I will share with you that at times I have been depressed because my boys suffered, have been angry at their suffering, and riddled with anxiety over whether I’d ever figure out how to help them be happy. For years at a time I put my own needs on the back burner, living from one potty training incident to the next, measuring my happiness based on how much each child had slept the night before. I had given up my much-loved career when our eldest was diagnosed, and subsequently the boys became “my job.” Quite honestly, their needs consumed me.

I lost myself.

It took me many years to realize that sometimes I needed to put my needs first.

Finally, one day I realized that with both boys our challenges came in cycles. Often we would have periods where things were calm, the boys were happy, and our home life resembled some sort of normalcy that I’d never thought we’d achieve. Of course, you’d think I’d be able to revel in those periods, “the space between” I’d come to call them.

Often, I didn’t. I’d be filled with dread waiting for the “other shoe.”

What I eventually realized was this. This autism gig was here to stay. These cycles would be my constant companions until my dying breath, which hopefully was many, many decades away. No matter how educated I was, how diligent I was, and how good a mother I was, I could not change this incontrovertible fact.

The only thing I could change was me.

It’s been about three or four years since I stopped “dealing in dread.” When one of my kids is suffering, I admit I am not good at compartmentalizing their suffering- I don’t think I ever will be. What I have learned to do is in those calm, quiet periods (and I can’t promise you, but I believe you will have them) is to grab onto life with a tenacious grasp, to take care of myself, to actually have fun. I make those doctor appointments I’ve been putting off for six months. I have lunch with a friend I haven’t seen in a year. I troll everyone I know to help me find a sitter competent enough to stay with my boys so my husband and I can get some relief.

As much as I can, whenever I can, I try to relegate anxiety over the boys’ collective happiness to a shelf somewhere in the remote recesses of my brain. I do this for them, because a happy mom is a more competent mom, and they need me to be that for them.

But I do this for me as well, because I deserve to have a life too.

So this Mother’s Day, and every single day that you possibly can, carve out some time that’s just for you, for your happiness. Perhaps it’s a night out with the girls. Maybe it’s fifteen minutes in the tub while your husband handles the kids.

Maybe it’s just a really good and well-deserved glass of wine in a quiet place. Chocolate helps too.

Try, as much as you can, to find happiness in the space between.

 

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April 30, 2018

Meet Him Where He Is

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 12:02 pm by autismmommytherapist

Another April 30th, another Autism Awareness Month in the can.

I know a lot of people have an issue with this month, as some feel they are brutally aware of autism 24/7, and I get that. Some have issues with the name of it just referencing awareness, and not acceptance or even celebration of autistic individuals. A few of my friends have had issues with their kids’ private schools asking students to wear blue since it’s “all autism all the time” there, and I can see their point.

The truth is, I pick my battles, and none of this bothers me. Anything that might help a stranger look upon my child with admiration and not scorn is good by me.

This year I’ve focused my writing for this month on caregivers of autistic individuals, and I’d like to wrap up this series with a quick vignette and a shout out particularly to parents whose kids have just been diagnosed (of course if your kid has just been diagnosed you probably don’t have the time or energy to read this, but come back to it if you can).

One of the most difficult things for me about Justin’s autism was letting go of what I thought should make him happy, and embracing what did make him happy. Before he was diagnosed at seventeen months my husband and I bought him all the toys we knew our other friends’ kids had liked, and we waited eagerly to see him playing with them. He eventually did, but not in the way we thought he would. Trucks and cars were placed in careful lines. Toys were rotated and never played with in a traditional way.

Imaginative play was only a dream.

Getting his diagnosis was somewhat of a relief, as now we knew for certain what he had, and we had a game plan to get him what he needed, which eventually resulted in a move north. Our new location afforded him wonderful early intervention services, an excellent education at a school which knew how to care for him, and proximity to family and venues Justin would eventually like.

Notice I used the word “eventually.”

When Justin was younger all he wanted to do was stay in our house and spin things. I pushed him to go on outings- first, it was just walks in his stroller that he eventually began to love. After we moved to the Jersey shore and had access to boardwalks and Great Adventure and beaches (oh my!) I began my quest to acclimate him to these places, to help him with his sensory overload and crowds and waiting on line (still working on that one but it has improved greatly) so that he could have a life outside of our home.

I won’t lie to you- these outings were work, the way that Disney is a working vacation. Some days we only made it to one ride at the boardwalk, or half an hour at the beach. I have little half moon scars all over my body from his protests that it was time to go home- I did not always escape our outings unscathed. After some time and many trials Justin did learn to love most of these places, and I learned to read his needs and create routines to tailor each experience to him so that our little excursions made him happy.

And the key to all this acceptance truly was seeing our trips from his perspective.

Justin will be fifteen in a few weeks. I have it on good authority from my friends with teenagers that their boys are really into girls right now (okay, he may have that in common with his neurotypical peers), that they’re starting to think about colleges, and all are yearning to drive and slough off the shackle of their parents. On the other hand, my fifteen-year-old still loves Baby Einstein DVDs, adores roaming throughout New Jersey on the Midas Rent-a-car site, and thinks YouTube is swell.

Again, he may have the latter in common with his NT peers too.

The truth is over the years I’ve learned to meet him where he is, not where I think he should be. This doesn’t mean that I’ve given up on him, or I don’t wish he would have all those pretty options in his life. I will wish he had those choices until my dying breath (which I’m shooting for to happen at about 120, we’ll see how that goes.)

It’s just that in order to have a connection with my son, and we have a profound one, I needed to pay attention to what brought and brings him joy, and capitalize on that moment.

I had one of those moments yesterday.

Back in the day when I had only one child my mom’s 60th birthday was coming up, so I thought I’d make her a DVD of photos and video clips of her only grandchild. The disc encompassed Justin’s first two-and-a-half years of life, and it was set to songs Justin loved as a child, tunes that held special meaning to us. It’s still a fan fave, and as he has access to it a few months a year I heard him playing it yesterday, his eee’s chiming in with notes from “Somewhere Over the Rainbow” as he gleefully rocked back and forth. I put down my dishwashing (gladly!) and walked over to where he was standing, taking in his ebullient grin.

He stopped rocking, smiled even broader if that was possible, and took both of my hands to dance.

I can share with you that this occurrence does not happen often. In fact, if I hadn’t put down those dreaded dishes I would have missed the moment, as playing the same twenty second clip is much more reinforcing to him in the long run than dancing.

And I am, after all, his mama, not a pretty teenaged girl.

If your child was just diagnosed, I know your world is spinning, and there must be so much you feel you can’t control. If you can, just try to find a moment, maybe it’s only one a day, where you connect on their level with something that brings them joy. If you do that enough you will weave a tapestry of threads that connect you to one another, a relationship you can build upon which will help both of you greatly in the years to come.

We have a profound connection he and I, one I know will last a lifetime because we’ve built on these moments, stretched and elongated them to encompass our love for one another.

Yesterday we had our moment because I met him where he is.

 

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April 23, 2018

The Other Shoe

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

His “eees” resound throughout the living room, punctuated by small silences that make me look anxiously toward him and gratefully away as I realize they are just silences, not episodes of catatonia which invade his happiness and enjoyment of life. Since we started a new medication eight weeks ago we have seen a vast improvement in quelling his disorder, starting with near-miraculous eradication of the spells for two weeks, a plateau where they resumed but not with their initial ferocity, and a leveling out that both his school and family can live with on a daily basis. It has been an incredibly stressful six months of first having to diagnose him, choosing between conflicting diagnoses, and then holding our collective breaths and hoping we picked correctly and treatment would help him.

It did. And a half a year and two very tired parents later, we are profoundly grateful.

Justin is almost fifteen, and to tell you the truth I anticipated that going into puberty there would be something (all my friends’ kids have experienced some additional challenge to their severe autism), but honestly, I never thought it would be this. I anticipated aggression, or seizures, or even self-injurious behaviors which he had never exhibited previously, but not catatonia. Frankly the only time I’d ever heard of it was in relation to the movie “Awakenings,” which was a total tear-jerker and sad as hell. I read a lot about autism on various websites, and I was stunned I’d never heard of this disorder that affects between 12-18% of all individuals on the spectrum.

Live and learn.

Although I was prepared for future challenges, I have to admit I was (and am) angry my boy has one more thing to deal with in his life. Quite honestly I feel that dealing with severe autism and OCD are enough to handle, but the universe has mocked me and has other plans, so now we’ve added catatonia to the mix. Since I was anticipating something would rock our world and we’ve now identified it and are treating it you’d think the drama would be over, and it is somewhat. We have a name for what ails him. There are several treatment possibilities should what we’re doing now fail. It should be life back to “our normal.”

You’d think I could say the other shoe has dropped. But with autism, and especially with severe autism or any severe disability, it ain’t over ’til it’s over.

This year I’ve dedicated my writing for Autism Awareness Month to helping caregivers. I’ve spoken about getting the help you need, whatever that may be. I’ve written about the importance of making friends with parents of children with your child’s level of severity. Today I want to talk about how important it is to let the people in your life know the big picture, especially if your child will never live independently and will always need your care, or that of a caregiver.

For years my husband and I didn’t talk about the long-term implications of Justin’s severe disability. I think we kept things close in part to not worry people, and perhaps somewhat out of a fear that if we were “Debbie Downers” people would abandon us. I’m not a big believer in regrets, but if I could go back and change a few things I would have spoken more about the potential and likely trajectory of Justin’s life, just so the people who are important to us could get a glimpse of what his forties, fifties, and beyond will probably entail. For once I recently took my own advice (a miracle!) and wrote a long email detailing Justin’s newest disorder, the various treatments he might have to endure, and even worst-case scenarios. I even explained how having catatonia could severely affect not only his post-twenty-one life, but his parents’ lives as well. I laid it all out there, held nothing back.

And damned if almost everyone responded with kindness and concern.

Of course this response rate is a testimony to having understanding families and my choosing good friends, but this disclosure helps in a myriad of ways. It’s also a dozen or so less times I have to spill my guts and try to make people with no direct contact with severe disability understand how profoundly this affects my family both now and in the future. If I have to cancel a get-together I don’t have to explain what’s going on, or discuss why perhaps I’m just completely overwhelmed and can’t make it that day. This understanding of our situation can help prevent relationships from disintegrating, and help others understand why my stress levels the last six month have been through the roof (my new blood pressure medication can bear witness to that). Quite honestly, it makes it easier for me to ask for help if I need it, as once people get the huge ramifications of what Justin’s experiencing they will probably come to our aide more often if we ask.

And God knows, we can all use a little help sometimes.

I don’t tell everyone the full story. I am careful in who I choose, selecting individuals I know will care and be genuinely interested in what’s going on. Good friends, yes. My dental hygienist in my thirty seconds of speech- not so much. I try to avoid people whom I know will get that glazed look in their eye when I speak about my son. It’s not worth the trouble.

You will find probably find however that a number of people in your life are genuinely interested in your family’s story, and I recommend you divulge away. Let people know what autism means for you on a daily basis, not just how it affects your hopes for your child, but your daily routine as well. If disclosure leads to them asking if they can help, give it a try and let them. Honestly, if they drop you like a hot potato after you disclose they would have abandoned ship eventually anyway. It’s better to cut ties sooner than later.

With many types of autism, there exists the perennial “other shoe.” For my family, the worry will never be over as I strive to outlive my son and know I never can (but I’ll give it my best attempt). If I’ve learned one thing in my decade-and-a-half living with an autistic child it’s that there will always be something, and it may not be pretty. Lighten your load if you can. Speak up when it’s appropriate.

Try to loosen your grip a bit on that other shoe.

 

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April 16, 2018

Make New Friends

Posted in Life's Little Moments, My Take on Autism tagged , , , at 2:38 pm by autismmommytherapist

Last night I snuck out of my house on a Sunday night, left the kids to my husband, and had a fun and civilized meal with several of my autism mommy friends whom I’ve known for years.

I know, don’t hate me. It was bliss.

We haven’t had the opportunity to do this in over a year, although we all keep in touch with one another through Facebook or in person. One of these amazing women will have her doctorate in a few months. Another has been an advocate for her son and other autistic people for decades. Yet another runs a bike camp for kids with autism with a phenomenal success rate of independence. All of us save one have two autistic kids each (we are very good at making people on the spectrum apparently). We are all coping in our various ways, optimistic yet realistic about our children’s futures.

We are also all very tired.

For two hours we talked about autism and (amazingly!) other things, just reveling in being with people who “get it,” and not having to fulfill a single mand for a while (my autism peeps get that one). It was a glorious evening despite the weather, and we all vowed to not let so much time go by before the next one.

I know that it is integral to my sanity to have these women in my life, and I do not exaggerate (not even a little).

I’m writing about this today because it is (still!) Autism Awareness Month, and my focus this year is on caretakers remembering they need to care for themselves too. Something I feel that is essential in surviving this autism gig is making friends with other parents of autistic children, and going one step further- making sure you connect with someone whose child has the same level of autism as yours. I have friends whose children are on the same end of the spectrum as my high-functioning child, and our conversations are necessary and yet bear absolutely no resemblance to the ones I have with my friends whose children reside on the more severe end of the spectrum. I’ve found I need both perspectives to glean advice, vent, and have a conversation with someone who comprehends the long-term ramifications and the logistics of what I’m discussing regarding each of my sons.

Plus it is exceptionally fun to have at least a couple of people in my life I don’t have to explain every single detail to. It leaves more time to eat and drink wine.

Whether you’re just starting out on this autism path with your child or you’ve been in the trenches for a decade or more, try to make those connections. One of my sons is still friends with a boy we met in pre-school (I am tenacious in my relationship-building). Back in the day when my kids were little I often signed them up for events with our local autism organization, and I met a number of parents there. One I met through a contact who thought she’d be a good person to speak to regarding our school district, and although I can’t remember who set us up I am forever grateful we connected. With my more high-functioning kid I made friends through volunteering at school and in cub scouts. Sometimes a special education PTA meeting is a wonderful place to forge those bonds- even if your town doesn’t have one the one a few towns over might. My kids’ hairdresser wouldn’t let me leave the shop one day until I cold-called a woman who also had autistic kids (trust me, major eye rolling ensued on my part) because she insisted we had to become friends, and she was right.

I even inappropriately befriended all of my son’s early intervention therapists. Hell, they were always at my house anyway.

It will take time (which I know you don’t have) to build these relationships, but I cannot stress enough how integral they are in both helping your child and helping you. No matter what stage your child is in you need a sounding board, someone who can help you make connections to assist your child, and/or hopefully someone who just knows how to listen, won’t make suggestions, and just lets you vent.

Sometimes having the latter is imperative before you can even attempt the former.

If you’re just starting out on this autism journey I know you’re probably scared, overwhelmed, and of course, more than a bit tired. Try to reach out if you can and make friends. It will help alleviate your fears, reduce your stress, and benefit not only your child but you too in the end.

Plus, it may actually end up being fun, and I’m guessing you could use a little fun right about now.

Find that person who’s a good fit for you and reach out. If that doesn’t work, try another. Pretend it’s high school (God forbid!) and you’ve got to just keep going until you find your niche.

It will be worth it, I promise.

Don’t give up.

 

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April 9, 2018

Just Get Help

Posted in Life's Little Moments, My Take on Autism tagged , , , at 9:54 am by autismmommytherapist

Ah, the silence.

It is the first day back after spring break, and I am reveling in the absence of sound, the dearth of requests for juice/snack/world peace (okay, maybe not the last one, but it felt that way sometimes). Both kids are healthy and safely at school, and maybe their mommy can begin to dig out after the last three weeks.

Spoiler alert- if I put the last twenty-one days on a tv drama it would be canceled for its absurdity.

My trials began two weeks before break with my husband traveling, during which of course we had a snowstorm (thank God for good neighbors with snow blowers!). After a calm weekend I got a call on Monday from my youngest son’s school saying he had stomach pains, forty-eight hours before he was supposed to perform three times as Gaston in the school play. There ensued two trips to the ER in six hours (no, not appendicitis, which I think they could have checked for the damn first time), and an emergency call to my mom to sleep over and take care of Zach the next day. Six hours after my husband got home from the ER we were in a car to Baltimore for a round trip to see a catatonia expert we’d waited two months to meet. The next day my boy rallied and performed his heart out several times, and the following day his elder brother and I took a seven hour round trip to see his neurologist. We capped it all off by starting spring break with Justin catching a stomach flu and living in the bathroom for three days, with a spectacularly violent episode (I’ll spare you the details) on Easter morning.

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

After Justin lost about five pounds and finally rallied we had our first “healthy/calm” day in almost a month, and my body rebelled. I haven’t been able to nap since my thirties (more than a few years ago), but the day after Easter I found myself stretched out on our couch almost all the way into slumber, to the point where Zach felt he had to hold his hand up to my nose to see if I was still breathing.

There’s not a lot of “alone time” when the kids are around.

The truth is my body just collapsed, and it took me several days to recover. I find this to be immensely annoying, as for decades I was always the girl who if she got a half-decent night’s sleep could keep going indefinitely.

I know, welcome to aging.

For once, I listened to my annoyed body and took care of my needs. The kids spent most of their vacation at home, Justin on the computer and Zach reading and watching movies with me. Of course the weather sucked which helped in my decision, but we probably could have squeezed out a day at the boardwalk or at Great Adventure. We didn’t. They were fine with it. I got (most) of my mojo back.

And it all reminded me how important it is for all of us caregivers to take care of ourselves, not just our kids.

This sentiment is not just limited to caregivers of autistic children by any means. We are a generation of parents burning the candles constantly at both ends, ever accessible to everyone with our smart phones, with a lot of pressure to do more and more for our kids. Often I’m simply overwhelmed by the sheer logistics of it all, and don’t have time to even contemplate the more daunting aspects of our lives with a severely autistic teenager. Sometimes I forget to recharge, and it always comes back to bite me, either with my falling sick or lacking patience or losing sleep over thinking about what I have to do the next day.

And for those of us contemplating lifetime care for a child or children, the stakes are even higher and much more complicated.

This is autism awareness month, and as much as I am utterly and completely aware of autism and how it affects my kids, I am also aware of how it affects me and my husband. It is imperative that we take breaks sometimes, recharge, remember who we were before autism and children came to call. I know some of you are probably thinking “how the hell can I do that when I can’t leave him/her with a sitter”. I was at that point many years ago when Justin was younger and so intensely difficult, but we kept persevering, and eventually our hard work paid off. We did find one or two brave beings willing to watch our boy no matter how challenging he became, and my husband and I would get out and have a few hours of normalcy together where we could reconnect, and oh my God, have fun.

Getting help is imperative to your physical, mental, and emotional health. Don’t stop trying until you find someone who can give you that break.

Whether your child is just getting diagnosed or is approaching puberty, caretakers’ needs are the same. Sometimes dealing with an autistic child is absolutely grueling. We caretakers have to attend to our needs so we can be the best parents possible for our children, but also, and I feel this message often gets lost, because we deserve to be happy and live our best possible lives too. Keep trying to find that person who can handle your kid for a few hours. Any time someone offers to help take them up on it, even if you’re nervous about it. At the worst you’ll get a few hours off from parenting, and at best, you might have found someone willing to come back.

Keep trying. You and your sanity are worth it.

Don’t give up.

 

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April 2, 2018

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 1:03 pm by autismmommytherapist

In just a few short weeks it will be fifteen years since my severely autistic son came into the world and made me a mom. His birth fulfilled both a two year quest to bring him here, and a longing I knew would never be quenched unless I became a mother.

In that decade-and-half in which I brought a second autistic child into the world, I have to say I am very, very aware of autism.

I don’t know when exactly I made the shift from wishing for awareness to expecting acceptance to hoping for celebration of my sons’ unique autistic souls. Perhaps it was a few years ago when we were in a lull in springtime, both boys at their best, the two of them happy, safe, and productive. Perhaps it was more subtle than a watershed moment, just a realization that at least in my community my sons’ autisms are not looked upon with pity, but rather with admiration at all they’ve accomplished.

Yes, I know, you’d all like to live here now.

The truth is I’ve moved past awareness and acceptance in my wishes for a post- World Autism Month. It has been at least a decade since an unkind comment or glance has derailed me, years since I cared what anyone in society thought about my severe son’s stims or noises. I can honestly say at least in my little corner of the world people are more than tolerant- they acknowledge my son, speak to him as if he can understand (which he does), and aren’t concerned with his differences.

And yes, I know how very lucky we are.

The truth is I’m past what people think. My focus is now a call for action. I figure I’ve got a good thirty or forty years left on this earth (if I’m lucky), and believe me, I do have a lot of wishes.

I wish for Early Intervention in all fifty states to follow New Jersey’s model of care, where many families receive thirty hours per week of services.

I wish for better group homes for those who cannot achieve independence, programs which are not just glorified babysitting services but are meaningful for those who participate in them.

I wish for more colleges to create programs to support those individuals on the milder end of the spectrum, including both their academic and social needs.

I wish for better medications to help quell the more challenging aspects of autism.

I wish for improved day programs, one of which I hope will both entertain and teach my son new skills as he lives his life.

I wish for insurance companies to make it easier for families to access therapies.

I wish for schools and child study teams to acknowledge the needs of children on the spectrum and not make it so difficult for families to acquire what their sons and daughters need.

I wish for my severely affected son to live in a world where his challenging nature is overlooked for his affectionate and loving soul.

I wish for my mildly affected son to find love and be judged by his actions, not his neurology.

I wish for all the world to celebrate my sons, their kind natures, their inherent intelligence, their unique contributions.

I wish for all autistic individuals to live in a world where they are celebrated.

 

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March 20, 2018

Practice What You Preach

Posted in Life's Little Moments, My Take on Autism tagged , , , at 10:27 am by autismmommytherapist

For the last five months we’ve been watching our severely autistic son have “episodes,” interludes in which he bends over at the waist or sits staring, still able to hear us, thumbs tucked into his palms. He can endure these spells for seconds or minutes. Sometimes we can get him out of them, sometimes not. After soliciting four different opinions we’ve narrowed his symptoms down to autism-related catatonia, which affects 12-18% of individuals with autism. If he does not respond to treatment the condition will worsen. The more time that passes, the harder it is to alleviate the symptoms.

And trust me, the harder it is to watch.

We started Justin on a medicine for catatonia a little over two weeks ago, and he responded almost immediately. Within twenty-four hours we did not see the eradication of the disorder but did note a lessoning of episodes, a shorter duration of episodes, and equally important, the ability to get him out of them much easier. This period lasted both at home and at school for twelve glorious days.

Then, on the thirteenth the data came back from school, and it wasn’t good.

Over the last week there have been more episodes at school, but thankfully not to the extent that he was having them prior to being on the medication. Over the last few days we’ve again seen a lessening of spells, and I hope he’s working his way back to that glorious period where our boy was back, his happy self shining through. I admit, my hopes plummeted on that first “iffy data day,” and I was not a happy camper.

But one thing I have learned in almost fifteen years of being a caretaker of a severely autistic child is that there are no quick fixes with autism.

If you’ve heard of any let me know.

When he was younger, I often rode the roller coaster of emotions related to how my boy was doing. I strapped myself in when he had insomnia, stopped eating, became aggressive at home, and his OCD ramped up so much that we were following him around the house 24/7 to halt his aberrant behavior. In his younger years I took it all to heart, losing sleep, making myself sick sometimes.

About five or six years ago I knew I had to stop. Be worried about my boy’s safety and happiness? Sure. Work myself into a frenzy ever time some new fun autistic twist occurred? No more. I need to be a whole, sane mother for this child. I need to be a whole, sane mom for my other child.

I need to be a whole, sane, calm person for me.

So I am practicing what I preach, taking each day, sometimes each hour, at a time. We see a specialist in catatonia next week, and we may have more answers then. We could be in an entirely different place a week from now, either good or bad. The appointment may go well, or may raise even more questions than I had prior to schlepping to Baltimore.

I can’t control my son’s neurology. But I can control how I react to it.

And for my sons and myself, I’m going to do just that.

 

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March 12, 2018

Hope Part Two

Posted in Life's Little Moments, My Take on Autism tagged , , , at 1:08 pm by autismmommytherapist

My heart hears the sounds first.

For five months I’ve been longing to hear his vocal stims, that eternal “eeeee” which punctuates his delight in whatever activity he’s engaged in at the time. Since October I’ve listened to the sounds slowly fade away, to be replaced by a boy bending over at the waist and fluttering his eyelids, hands clenched as he is swept up in a neurological maelstrom he can’t control. We’ve intervened as he’s attempted to climb into the bathtub fully clothed to submit to his brain’s will, countered him time and time again on the coldest and wettest days to prevent him from escaping outside in his socks to surrender. His episodes have happened in the car, in the movies, at meal time, while getting on the bus- the list is endless.

The only time he’s never had one was when he was seeking comfort in my arms.

It’s gotten so that Jeff and I hate to leave a room he’s in when he’s in his “normal” mode; we are loathe to leave because of the suffering we might see upon our return. We tried a medication for eight weeks and watched him steadily worsen, a period of time in which we gathered the opinions of other professionals from various disciplines in case Justin didn’t have what we were treating him for. Of course the four practitioners we chose split evenly between two different diagnoses, which meant that my husband and I had to decide on what we thought he had and hence the treatment for it.

With one disorder we might not know results for months. With the other we could know immediately if the medication was working. Plus, this one was life-threatening.

Not so much a Sophie’s Choice.

So we took a leap of faith and took the advice of a doctor we’ve yet to meet other than on email and started him on a new medication a little over a week ago, fingers and toes crossed, praying we could alleviate this hell for our boy.

My heart heard the absence of silence first.

When not suffering from what we believe is autism-related catatonia, Justin is lustily vocal. It is often how I track him around the house, his “eeees accentuating his joy in any given moment. That illusive vowel came back first as I followed him compulsively around our home, keeping vigil on his body movements, hoping the quick response to his medication was neither imagined nor short-lived. His natural movements, the hand flapping, “Rain Man-style” rocking back and forth returned to our collective glee. Yesterday we went fifteen hours without an episode, and someone was watching him every moment. We rejoiced in both the absence of episodes and the return of “his normal,” knowing we’d need more time to make sure this treatment plan has truly worked.

But more important than the return of rocking and “eeeing” was the return of my son’s joyous self.

For the past five months I’ve been living with the shell of my son. Almost completely vanished were his random kisses, his requests to dance with me, his insistence on our mutually beneficial hugs. Most importantly what broke our hearts was the slow slipping away of his smile, the one he reserves for those in his inner posse and the one he exhibits solely to show his exuberance for the world. I really, really, missed that grin.

Slowly, after a few days of treatment, his illuminating smile came back.

Catatonia occurs in 12-18% of autistic individuals, and often has its onset around puberty, within which Justin is firmly ensconced. Despite all my reading about co-morbid disorders with autism I had never heard of the disorder afflicting this population until a mitochondrial disorder doctor suggested it. Two weeks ago we guessed this was what he had after sending a flurry of emails and videos to a psychiatrist we have yet to meet. It was scary to choose, as both get harder and harder to eradicate as time goes on.

In the end we went with our gut. And I am sending a big request out to the universe that we are right.

 

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March 7, 2018

Hope

Posted in Life's Little Moments, My Take on Autism tagged , , , at 11:34 am by autismmommytherapist

It’s now month five of watching Justin struggle with his “episodes,” and after ruling out seizures and tumors and mitochondrial disorder (oh my!) we’ve finally narrowed our options down to two different disorders. My husband and I are big second and third opinion people, so we’ve consulted several different practitioners, and of course, they conflict in their opinions of what he has.

God forbid there should be a blood test with anything associated with autism.

Of course both issues are treated completely differently, and in the end after reading and watching videos and consulting with doctors in different disciplines Jeff and I had to choose which one we think he has (what fun!), and have started treatment accordingly.

Because of course an ex-elementary school teacher and a higher ed consultant are experts in the field of autism-related disorders.

Over the years we’ve battled many conditions associated with Justin’s autism- OCD, insomnia, aversion to eating, aggression. The truth is with most of these I was able to keep hope alive we’d solve the issue (OCD however is a tenacious little bugger, he’ll have that for life), primarily because I saw many of my friends go through these problems, and after weeks and sometimes months they were resolved. We’ve always schlepped Justin to really good doctors because we’ve found middle-of-the-road practitioners to be a waste of time, and since I had faith in them, I had hope we’d resolve his problems too.

This time, I’m finding it harder to conjure up that hope.

Part of this is that I’m older now, have been doing this dance for almost fifteen years, and people, I’m tired. I laugh as I say this because I’ll be doing it for thirty or forty more and it’s a little early to let fatigue set in, but this is where I am. We’ve started him on a new medication and have witnessed what seems to be improvement, with less improvement at school but some progress none-the-less. His school is wonderful and collects data on his episodes daily, and for the past few days I’ve been a junkie, waiting eagerly for him to get off the bus so I can get my data fix.

It’s the little things.

The truth is with autism-related disorders it can sometimes take months or even longer to resolve the issue, and sometimes it can’t be resolved. There are numerous medications to try on the path we’ve chosen. If this doesn’t work and we address the other potential issue it will be months before we wean him off the medication that might be the culprit.

There are no quick fixes with autism.

But I’m going to shuffle out that hope, drag it kicking and screaming into the light, because frankly the alternative sucks. I will hold on to any period of time where he’s just himself, that loving, affectionate, smiling, huggy kid who just wants peace, juice, and some form of entertainment to keep him occupied. I have to conjure up that faith because I have a responsibility to him, to my other kid, and to myself to stay healthy and open to the possibility that he will, indeed, get better.

We will wait. We will watch. We will hope for resolution, because the ramifications of this for Justin’s future are huge.

And I will hold on to every time my boy smiles at me and embraces me with his true self.

 

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