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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June 27, 2017

Try Something New

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 10:06 am by autismmommytherapist

Ah, so much to share…

We’re in week two of Justin’s first summer hiatus, and there have been regressions and challenges. For the first time in years I’ve had to employ the angel guard on his seatbelt, as he was trying to get out of his seat to rearrange my CDs while I was driving (super fun, I know!). We went back to the days where he’s perseverating on the DVD player by pushing the buttons over and over and over (and over) to the point where the poor thing is going to break. There’s even been a bit of regression with toileting.

I’ll spare you the details on that one.

But throughout the chaos, there’s been light too.

About four months ago I got the crazy idea that Justin should try two new camps this summer. The truth is over the last five or six years Justin has not been big on trying new things. I am grateful that early on we got him out to places, because I believe that only since they’re now in his repertoire he enjoys time at the beach, Great Adventure, the boardwalks, and a few other locations, even if they’re for minimal amounts of time. To be fair in the last few years options for taking him places have dried up, so there haven’t been many opportunities to stretch him.

But then I heard about these two camps, which coincided with finding out his current camps weren’t running this year. So his momma decided to go for it.

The one camp I wasn’t too worried about was his week of horseback riding, although I knew it would be with totally different people and in a different location from his usual Saturday stint. His first day he hugged me really hard when I said goodbye, but I just knew it would be okay, that he’d acclimate.

He loved it, and they loved him.

Our second attempt into camp world gave me more hesitation. Its activities included soccer, stretching, arts and crafts, all things Justin has traditionally shunned since he turned five. I wasn’t sure he wouldn’t be clutching his aide and plaintively saying “Mama” in an effort to be saved from yoga, but again, he surprised me. They told me he participated in everything, that he loved it.

And again, they loved him and were disappointed I’d only put him in for two days.

Justin is fourteen now, and entering his transition phase. In seven short years (and I’ve been told they go fast) he will be graduating high school, headed for the big unknown. I don’t know what the future will bring for him, if I will be able to find a good day program for him, maybe a small job, eventually a place to live.

But I do know this.

No matter what his adult life entails, he will be asked to try new things, to go to new places, to adjust his routine and acclimate. He will be pushed and stretched to accept a new life, one that does not include his school, or one day living at home with his family.

And the best way I can help him to do that is to push him to stretch his limits now.

So I will continue to do this, even if the paperwork kills me (try applying for a Performcare aide, I dare you.) I will take chances for him, make the zillion appropriate phone calls, fill out the twenty page applications (by hand of course!) and keep trying to give him opportunities to grow. He deserves the most full and rewarding life possible.

And I’m going to do everything I can to see he gets it.

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December 19, 2016

New Year’s Evolution

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , at 11:23 am by autismmommytherapist

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(Editor’s note: I run this piece every year, it just seems to sum up everything. I hope you enjoy it!)

We made a gingerbread house today, my youngest and me. Not the fancy
version mind you, with its cinnamon-spiced cookie walls and sticky-sweet
icing for snow, but the felt version, as I have yet to figure out how
to create an edible construct that’s gluten and casein-free. The form
doesn’t seem to matter to Zach however, as he seems content just to
forge this linen building with craft glue and discretely adhered masking
tape. He is simply happy to sit at our designated table with his mommy,
and design his own.

I am thrilled to be here with him as well, as this is the first
“Christmas house” we have built together, and the added bonus is it
conjures up the requisite images of festive architecture from my
childhood past, pleasant in their remembrance. As I sit with him and
attempt to gain better purchase on the tiny chair I am well aware of the
enormity of this gift, the ability to carry on a tradition with my
child, one who is eager and willing to perform it with me, one who
miraculously was able to request its creation.

It’s the last month of the year, and as always, just like the
commencement of the school year, it’s a time of reflection for me. I
consider where we’ve been and where we now reside as I help Zachary
fabricate his house, watch him carefully separate out the pieces of his
one-dimensional art form with such care, and manipulate the tiny forms
with such ease. He desires to begin at the top of his home and work his
way down, and as I’ve never been one to insist on coloring in the lines
we alter our blueprint a little, an act we’ve committed time and time
again in our tiny family of four.

He begins with the roof, which he tells me firmly we require because
“it will keep everyone warm and cozy”. As I contemplate how he’s
incorporated the latter adjective into his lexicon of words I am
simultaneously reminded of the outpouring of care and compassion we’ve
received over the years, the small and grand acts of largesse, and the
kind words both spoken and written to encourage our clan in times of
conflict. These acts have blanketed us, permitted this family to retain
the heat, the fire necessary to forge through the most searingly
difficult times. We could not have built our own home without them.

Once the roof is safely adhered Zach moves onto the windows, neatly
punching through the cloth panes of glass to afford us a glimpse of the
other side, allowing us to widen our view. I recall how watching my
youngest son’s language expand, and my oldest son’s increasing desire
for social interaction, have both enabled me to envision a different
world for my children this year. We now inhabit a home in which the
future may hold more than just fleeting glimpses of a “normal”
childhood, one in which both of them may actually one day possess a true
friend. I am so grateful for that expanded vista, for the possibilities
inherent in those translucent frames.

Finally, Zach addresses the foundation, shoring up the edges with his
tiny fingers immersed in solvent, asking me if his careful
ministrations are correct. I smile and tell him his house is lovely, as
in its own way, is our own. Our foundation has also been conceived in
patience, moored in consistency, cemented in love. It’s not seamless,
and there will always be cracks. But it will continue to stand.

It will always stand.

And my wish for all of you in every year to come, is that your own
house, no matter how it’s constructed or what form it takes, will
continue to stand, wind and weather-battered, as magnificently strong as
ours.

(I’d like to take just a quick moment to extend my immense gratitude
to all of my readers this year. I am so appreciative of the time taken both to read my
missives and to comment on them, and your continued loyalty.
Happy holidays to all!)

 

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November 21, 2016

Giving Thanks

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:50 am by autismmommytherapist

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Every year around this time I try to do a post where I list all the things I’m thankful for, then admonish myself to reflect on these things more often, then forget to do that, then eat more chocolate to compensate.

I am, as always, a work in progress.

I am delighted to say that even in the midst of some challenging times with Justin I’ve found some things I’m truly grateful for, and am not just paying lip service to Thanksgiving.

I hope all of you have a wonderful holiday. For some of you I know this day is more about stress than fun- my hope for you is that at least you can find several moments of joy, some great food (if you have to escape early make sure your families pack up some pie for you), and at least a bit of peace.

And if all else fails, remember there is always wine.

Here are my reasons for gratitude this holiday:

-Despite our challenges at home, both boys are doing great in school. Honestly glad Justin saves it for us

-Grateful for my family and friends, who just get it

-Am grateful for other bloggers’ perspectives, both autistic and NT

-Profoundly grateful for the boys’ compassionate and understanding teachers and paras

-Grateful for Zach’s incredibly patient baseball coach

-Thankful for the community who helps my kids (more than a mere village I promise)

-Grateful I married the right guy the first time (God it makes things easier)

-Profoundly grateful for my readers and all their encouraging comments

-As always, thankful for my loves, chocolate and wine

-Grateful for Justin’s words and our sing-alongs!

-Thankful I still (albeit briefly) manage to make time to revel in every one of their accomplishments

– Grateful for my boys, my hubbie, and our life together

Happiest of Thanksgivings to all!

 

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October 24, 2016

Sing, Sing a Song

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 1:36 pm by autismmommytherapist

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He slides onto the chair with me, smelling sweetly of baby shampoo, an incandescent grin lighting his face. My boy knows what’s coming in his bedtime ritual which he adores, a ritual which will include an Eric Carle book, songs his mother will butcher, and what I generally call the “Justin/Mama lovefest” which precedes his exuberant dive into his bed on a nightly basis.

We know how to adhere to ritual chez McCafferty.

Justin’s been using his words more frequently lately, and for the past few weeks I’ve been letting him read parts of his nighttime book to me, which has been a thrill for both of us. The kid looks at me with pride after reading every single syllable, and trust me, after waiting more than a decade for mere coherent sounds to emerge from him, that gaze is returned.

Those words are pure gold.

We wrap up the first part of the ritual and Justin snuggles more securely into me (he’s almost my size now, I’m wondering how we’ll do this when he’s an adult), and I embark on my own fractured versions of his made-up baby song, “Over the Rainbow,” and “Silent Night,” which for some reason I began singing to him years ago and haven’t deviated from our playlist since.

I start my rendition of “his song” that I made up in desperation almost thirteen years ago to try to stop him from crying (it didn’t work), then stop as a brainstorm occurs in my withered synapses (I don’t have them that frequently anymore, so they must be honored).

If Justin can read to me, why couldn’t he sing to me too?

I start over with his baby song, then stop when we get to the “mama/dada” part and look at him expectantly. He stares back at me with a grin on his face, silent. I urge him to “sing Justin,” and he looks at me one more time, and damned if he doesn’t fill in the blanks.

Intraverbals at their very best.

I know that some of the words in their entirety will be beyond him, so with some of them I throw him the first syllable(s)- the “rain” in “rainbow,” the “lulla” in “lullabye,” and he gleefully fills in the rest. There are a great deal of consonants in the last words of every line of “Silent Night,” but he struggles mightily with his task, and with a little help he makes it through.

He’s tired tonight, so as soon as our singfest is over he kisses me and heads over to his bed, waiting to be tucked in. His bed is white, and I have a flashback to another piece of white furniture which housed him as a baby. He used to pull himself up with that one and often flash his toothy grin, and I can recall wishing desperately that we’d find some way for him to communicate which didn’t require pinching or crying.

Now, a dozen years and a lifetime later, my boy is singing to me.

And I can’t wait to do it again tomorrow.

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October 4, 2016

The Whole Tooth

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , at 10:32 am by autismmommytherapist

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He came home from his first day of school with a swollen lip and an inflamed gum, and I thanked the universe that this was one of his pediatrician’s “late days” and I’d be able to get him in to see his doctor. A short visit later we had a scrip for an antibiotic in hand, with the assurance that it might take a few days to see the swelling go down, and that everything would be all right (our ped is very nurturing).

Except, it wasn’t.

The stars aligned, and the next day I happened to have a cleaning with the dentist I share with Justin, who after I told my story of the lip and inflamed gum around the capped tooth he broke over a year ago looked at me and said “Kim, I am 99% certain he’ll need a root canal, and he’s probably in pain.”

Since I was being flossed at the time I didn’t have a vocal response, but I sure thought one, and trust me it was only four letters long.

Justin requires being sedated for extreme dental procedures and x-rays so fortunately getting him in to see his secondary dentist wasn’t difficult, and after racing through two counties several hours later my boy was evaluated, and the practitioner verified my dentist’s claim.

The dentist who checked him out wasn’t the lovely man who’d put on his cap months ago, but he seemed decent, didn’t bat an eye when I told him an x-ray wasn’t happening today and he’d have to make the diagnosis cold. As he explained the coming procedure he sent the assistant out to get me a date and time, and I listened carefully to him (actually understood a lot of it, maybe I missed my calling) and waited for the date when I could give my boy some relief.

She came back with September 23rd, two-and-a-half weeks later. Or, I could bring him back two hours later and they’d do a root canal on my severely autistic child with him fully conscious, using only Novacaine.

People, I kid you not.

Perhaps it was the thought of my kid being in pain for most of September, or the fact that he wasn’t eating anything. Perhaps it was the oh-so-indifferent look on the dentist’s face that sent me over the edge, or the assistant avoiding eye contact with me. Perhaps it was because in the last two weeks we’ve had Justin home for ten days, the stomach virus, the flu, and the death of our washer/dryer within hours of each other (apparently they mate for life like swans).

Or if I’m being totally honest perhaps it was the thought of an entire extra week of summer with no “Kim time”.

I’m not sure what tipped me over, but I’m guessing it was all of the above.

And quite honestly, I just lost it.

I played the autism card (and the severe autism card at that). I told them he’d starve to death. I reminded him the kid can’t talk and tell us he’s in pain, and that I guessed even liberal doses of Tylenol wouldn’t work for two weeks. Truly, I went batshit crazy as I tried to hold my thirteen-year-old who’s almost as tall as me now in their damn reclining chair so he wouldn’t run out and rearrange their office (although I wanted him too).

And wouldn’t you know, the assistant ran like hell out of the room and came back literally three minutes later with a time and date less than 48 hours away.

I am not indifferent to the plight of the patient who got bumped. I’m assuming it wasn’t an emergency procedure (um, like my son’s), but I’m sure it’s an inconvenience to reschedule, and if you’re out there reading this, I’m sorry. Chez McCafferty rescheduling is one of my worst nightmares, and truly, I regret you got the short end of the stick.

Perhaps it will be some solace to you that at least my kid can eat now.

The upshot is we had a different dentist do the procedure two days later who was fabulous (he gave me his personal cell number and told me to call him over the weekend(!) if I had any questions), and by Saturday afternoon my boy was his old self, and frankly pretty bored of being home.

At this point I can say I shared that sentiment.

I have to say usually I shy away from conflict when I can. Perhaps it’s being the oldest, but I’m generally a peace-maker, and still think people should at least entertain my point- of view (I know, I’m insane) when I have a disagreement with someone. I realized as I drove Justin home from the dentist that day that I haven’t had a good knockdown, drag-out, autism hissy in years.

And ladies and gentlemen, it felt good.

Over the years I’ve had to let it rip on doctors, therapists, sitters, Early Intervention providers, and just generally ignorant people at large in four different states (and a commonwealth!), but we now have a posse of good people and live in a town where for the most part people get it, so my skills have lain dormant for a while.

But I have to tell you, it was great to know they’re still there.

He will need further procedures on this tooth in the decades to come, and when they mentioned his fifties and I remembered his father and I might not be there for that one of course the old dread of his life post ours reared its ugly head. I mentally turned it around and hoped that a tooth issue would be one of the worst health problems he’ll face, which I know is wishful thinking on my part but I had to drive, so I banished it all to the back of my brain.

But for now, my son is his smiling, loving, incandescent self. There are so many things I can’t make happen for him, but I could fix this.

And his old mom’s still got some spunk in her yet.

 

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August 10, 2016

New School Year Transition Tips for Autistic Children

Posted in AMT's Faves, Fun Stuff, My Take on Autism tagged , , , at 9:54 am by autismmommytherapist

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Summer vacation is ending all too fast, and before we know it those bright yellow school busses will be darting through our neighborhoods and a new school year will commence. Moving to a different classroom, grade, or school can be stressful for any child; for those on the autism spectrum, handling anxiety about the unknown can be exceedingly difficult. These fears can be reduced by taking small steps to familiarize your child to his or her new situation prior to the beginning of the school year. Here are some tried and true tips to making a smooth transition, and to starting a new school year successfully.

1. Talk to your child frequently about what to expect in the upcoming year. It’s the simplest tip, and perhaps the most important one to help reduce your child’s anxiety.

2. Cross days off on your calendar. Some children may have anxiety about when the school year begins. Simply crossing days off the calendar may help your child better understand when the school year starts.

3. Create a new morning routine and practice it prior to the start of the school year. Begin waking up your child a little earlier each morning so that he or she is acclimated to the new wake-up time way before that big first day. Do a few “run-throughs” near the end of summer vacation so your child knows what to expect in the time before leaving for school. If your child responds well to visual schedules, you might create one outlining everything from getting dressed to going on the bus.

4. Take a tour of the school. This can be arranged with the case manager of your child study team. You may not get to meet your child’s new teacher this early, but at least your child will become familiar with the building prior to attending. When you are on your tour, visit the main office, bathrooms, cafeteria, gym, library, playground, and any room your child may spend time in during the coming year. Take pictures on your tour and incorporate them into a social story afterwards so that you and your child can review it during the summer (a social story is a book that a parent or caretaker creates to explain in written and/or pictorial detail what the child should expect for an upcoming event).

5. Walk through emergency procedures on your visit. Many children on the spectrum have difficulty with loud noises and breaks in routine. If possible, when on your tour, have your case manager show your child where to go and what to do during any emergency scenario. Doing this will help your child be prepared, and he or she might find it fun to have mom or dad practice standing along silently.

6. Create a daily school schedule for your child. You may not know the exact routine, but even walking through one day may make your child feel more at ease. If possible, ask your case manager to acquire the present year’s schedule prior to your tour, and have your visit at the school follow that schedule.

7. If at all possible, have your child meet the teacher prior to the start of school. Remember to take his or her photo and add it to your social story.

8. Write a letter outlining your child’s strengths, weaknesses, possible sensory issues, dietary restrictions, and favorite reinforcers. If possible, have your child help you create this document, as it will be invaluable input for school staff. Be sure to include a few things that are fun and unique about your child. A copy of this letter (one to two pages maximum) should go to your child’s teacher and aides, but should also be made available to any staff who work with your child. Remember to send a copy to the principal, assistant principal, occupational therapist, physical therapist, speech therapist, physical education instructor, music teacher, etc. It is very helpful to teachers to have a “snapshot” of your child prior to instructing him or her. Don’t hesitate to brag as well!

9. If appropriate, make certain a behavior plan is in place day one. If your child has a plan that’s been working for him or her, ask that it be shared with his or her new teacher and implemented immediately at the start of the year.

10. If your child uses an augmentative device to communicate, make sure all the adults in his or her classroom are familiar with it. Many augmentative devices require some instruction on how to use them. At the very least, the teacher should be familiar with the device prior to the fall. All the aides who will work with your child should be trained as well, and there should be a plan in place so that all are comfortable using the device within the first few weeks of school.

11. If your child has sensory issues make sure he or she has a favorite sensory item available from the first day. For those children on the spectrum who struggle from sensory overload, certain objects can offer a great deal of comfort. Make sure your child will have at least one available at all times.

12. Ask to meet the bus driver. Many bus drivers take a practice run the last week of summer vacation. Request a “meet and greet” with your driver so your child feels comfortable riding the bus on that first day. You can even ask if you and your child can do a ride-along to the school as some drivers are amenable to that request.

13. After the school year begins be on top of your child’s progress. Make contact with all of your child’s instructors in the first few weeks of school. This enables you to track how your son or daughter is progressing and lets school staff know you are interested and invested in your child’s success.

14. Write a thank-you note to your child’s teacher and principal. If the first few weeks go smoothly for your child, it never hurts to thank those responsible for a smooth transition.

15. If possible, volunteer. Your presence at school sends the message that you are actively involved in your child’s education. Also, (for the most part) children love to see their parents at school. You will score points for being there!

16. Ask for help. Requesting assistance shows that you are willing to learn and to try new things to help your child.

17. Last, but definitely not least, try to relax. All children can pick up on their parents’ anxiety. If you can keep yours in check, it will help your child stay more calm on that all-important first day and through the school year.

Have a great year!

 

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June 28, 2016

Make New Friends

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , at 11:08 am by autismmommytherapist

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This past weekend I had the great fortune to have dinner with a couple of my “autism mommy friends,” an evening out which not only provided me with great food and conversation but let me escape doing the dishes for one night. I really like and respect these two women, whom between them have three adult autistic children on the more severe end of the spectrum. We of course ended up talking about our kids and autism as we usually do when we can sneak out of our houses, and while basking in the glow of super fun martinis caught each other up on our lives, laughed, and bonded.

 And I realized as a mother of a severely autistic son and a high-functioning son (although I dislike both those terms), it’s important I have friends in both camps.

I also have friends with kids on the milder end of the spectrum. Some of them are women I’ve known from Zach’s pre-school days, women I really liked, and worked hard to develop relationships with them. These friendships have afforded Zach the opportunity for playdates as well, and I’ve also cultivated these friendships for that reason, as our collective ability to get together these days is always extremely limited.

I find my conversations with these two disparate groups bear almost no commonality.

When I discuss Zach, I talk about the merits of different schools, whether or not we should try baseball, which teachers I’ve heard are good with our kids in the approaching grades.

When I talk about Justin I usually am giving an “OCD update” and an “outing update,” and when things get serious, talking about those post-21 days and what I’m hoping his life will look like.

I will share with you I’m still working on that one.

I need moms to talk to in both camps, not only because my sons’ life trajectories are so different, but because I care equally about the decisions we have to make about their futures, some not so simple, some easier than others. Autism can be so isolating, particularly in the early days. I’ve found it an invaluable help to have other women to bounce ideas off of, to be able to say my more severe kid hasn’t slept well in four days and have them know immediately my fear is that this new change is permanent (and have them talk me down off the ledge). I need a friend who understands that when a teacher goes out on maternity leave it’s a big deal for my littlest son (and know she’ll talk me down off of that ledge too).

I just need people who get it.

So if you’re just starting out on this autism journey, I hate to say it but I’m going to add one more thing to the “get Early Intervention/deal with insurance/make doctor appointments/figure out their school program/try to sleep once in a while” list that invariable comes hand-in-hand with a diagnosis, no matter what your child’s age. Some people I know have found these women in support groups, or in the waiting rooms of private supplemental therapy offices. Many have made friends with moms they’ve met through their kid’s school, or by volunteering for a local autism organization. I personally made friends with all my kids’ Early Intervention therapists (hell, they were at my house all the time, I saw them more than my own husband), several of whom had kids on the spectrum who were older, and helped guide my way.

It doesn’t matter where you find them. Just find some good ones, and hold on for dear life.

Not only will these friendships save your sanity, but from my friends who’ve been around the block a bit with their kids who are older than mine, I’ve gotten invaluable information regarding our school system, available therapies, medications, and which local doctors are worth the trip and which aren’t worth the bother.

Hell, I’d nurture those friendships just for that last bit of info.

So when your life has settled down a bit and you can think of taking on one more task (and know I so get the enormity of that), make new friends. And as I paraphrase from what I used to say in Girl Scouts, keep the old, but make the new.

The new are gold for sure.

 

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June 13, 2016

Just Be

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

Summer 06 008

I just returned from a week in paradise. Please don’t hate me.

Last week my husband and I spent a week in St. Lucia to celebrate our 20th wedding anniversary. There were the usual ups and downs of any trip- a delayed entry to the island, being flooded out of our room the second night, a day lost to torrential downpour.

And none of it mattered, because we were together, childless, and given the priceless gift of relaxation.

I’m very fortunate that my mom is able to watch the boys for that length of time, and grateful we were able to sneak away. It’s been years since we’ve had the opportunity, and I could tell we really needed it. Of course being me I had to spend part of my week thinking about things (even being on a lush tropical island doesn’t preclude me from thought.) I subsequently realized a few things of importance while chilling out on my lounge chair. First, I acknowledged that in the past it would take me two days to truly relax, and this trip I got into the groove before the door even closed on our way to the airport. This is entirely due to the fact that as they’ve aged the boys have in general gotten easier.

Yet another thing to be grateful for, along with nice men bringing me pretty drinks on the beach.

Second, and most important, no matter what Justin’s living arrangements are after high school, I have to figure out a way for Jeff and I to have the opportunity to simply be. Whether he continues to live with us, or resides in a group home or shared living experience, Jeff and I will need a break.

We all need a break.

As I’ve mentioned before Justin is only thirteen, so we’re a presidential term away from serious decision-making- where will we live after both boys graduate, where will Justin reside, should he work or have a life of leisure. I don’t know what we’ll do yet, but for once I stopped perseverating about everything and let go, allowing the prevailing island attitude of “just be happy” wash over me without the tidal wave of worry that often accompanies most of the big decisions I encounter.

And I am determined to retain this attitude no matter what comes next.

I won’t blame autism for making me a worrier- I’m a fourth generation perseverator, and as my mom says, I come by it honestly. When not engaged completely in having fun I’ve been known to get a good worry on, a condition which was exacerbated when Justin turned six months old and started spinning everything in sight.

Spinning is not included in any copy of the “What to Expect Your First Year” book.

But over the last few years as things have started to ease a bit, and in some cases a lot with both boys, I’ve been able to lay down that mantle of anxiety and be more present, enjoy what’s in front of me, and not think about the future so much.

Trust me, for me this is a major milestone.

And that’s the key to everything. The truth is worrying hasn’t made anything along the way any better- in fact it’s made some things worse. The fact is I have very little control over anything, and while that used to terrify me, I’m coming to see this as a benefit. I can only do my best, things will play out as they will.

As long as chocolate and wine continue to be in my future, things will be okay.

So as life hits me, and it will, I have to remember to go to my new happy place. It’s a particular lounge chair with a stunning view, a prevailing wind just strong enough to cool me down, and the ability to relax and take things as they come.

Here’s hoping it sticks.

 

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May 30, 2016

Get Out

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , at 4:19 pm by autismmommytherapist

Justin BD 2016 Scouts 028

Recently I spent twenty-four glorious hours in DC, my former stomping grounds of fifteen years. I ate Indian food, and spent hours chatting with my bestie. I got a blister walking into Georgetown, and waved to President Obama through the White House fence at night. My friend and I abandoned our kids and husbands for one fabulous weekend, and we plan to make it an annual event.

And Jeff managed an entire day-and-a-half on a weekend with both kids without help.

I’ll say it again- he managed for a day-and-a-half on a weekend without help.

Many of you who don’t know my husband may be doubting the competency of an individual who can’t watch a teen-ager and a nine-year-old for thirty hours without assistance, but my boys both have autism (my eldest is severe), and that can make things difficult sometimes. Both Jeff and I have found it challenging (sometimes that’s an understatement) to make it through an hour much less an entire day with the boys, and I’m a former educator who managed classrooms of thirty children with relative ease. There were entire years if one of us had something to do in the evening (usually it was a PTA meeting, nothing too exciting unfortunately) we’d literally have to have a sitter help with the bedtime routine, as we didn’t feel it was safe for one kid to be unattended while we put his sibling down.

As you can imagine, we didn’t get out much.

But I would say in the last two to three years there’s been a subtle shift toward independence in our household, with both boys maturing, and dare I say it, becoming much easier to manage. Three years ago I would have been able to pull off two week days in the nation’s capitol, but never a weekend, much less both weekend days. Three years ago I wouldn’t even have asked, knowing most likely complete havoc would have reigned chez McCafferty, and my little excursion to DC would have died an untimely death.

To see this one particular friend who’s flying in for our “event” we now need to see each other on a weekend, and I feel confident we can make this happen annually.

And I cannot tell you how utterly liberating this realization is to me.

I wrote this today for any parents of autistic children (or hell, any children) who may feel “stuck,” who are watching the parameters of their lives lessen, who feel the walls closing in on them. I can’t promise you it will get better, because everyone’s definition of “better” is different, and of course I don’t know your child or your family.

I will never make promises on this blog that I can’t keep.

But I will say this. You feel like you still want a life? Don’t give up. You need a night out with your hubby but you’re afraid to leave your kid with a sitter? Find someone you trust, work up to an evening out, and do it. I know most of us autistic families aren’t exactly rolling in extra funds, but one of the best ways you can be the best parent to your child is to take care of yourself.

I’ll say it again. If you want to be the best possible parent to your child you have to take care of yourself.

And that includes having fun.

So do whatever it takes, take up that nice neighbor on her offer to babysit, and go. Enjoy yourself. Have a drink (or two.) Eat too much. Put your child on the back burner for an hour or two and remember who you were before children came into your life. Recapture how much fun you used to be.

No matter what, just get out.

 

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