New Year, New {Autism} Mom

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I’ve never been that interested in New Year’s resolutions. But these days, as a mom to an adventurous five-year-old boy on the autism spectrum, I have found that goals are what give us direction, forward movement, and growth. They maintain our sanity and our hope. They are the light that remains through the daily storm of autism.

These are the top 10 goals I will accomplish this year. I’m not talking about aiming, striving or hoping. I WILL do these for myself, for my son and our family.

  1.  I will not fear the big stuff. The longstanding goals such as increased communication, temperament during haircutting, toileting and other self-care, broadening the diet and success and safety out in the community will all improve. While this “long-term” category can feel heavy and loom over us, we will not let these important pieces defeat us.

2.  Patience. Self-coping and calming techniques (for everyone in the family) have steadily made their way to the very top of our priority list. Some days, this is our only focus. For my son, every single other thing must come second as he cannot hear, speak and certainly cannot be reasoned with when he is overwhelmed or sensory-heightened.  Finding and remaining in this place of calm takes patience. So much patience. It’s funny, how many people comment on how patient I am. If only they knew the amount of time I spend searching and praying for more.

I will also be patient while my children stutter and search for their words or attempt to express their wants and needs. I will wait it out just a little longer when they struggle to put on their clothes or shoes, brush their hair and teeth, or attempt household chores. If I constantly jump in to assist, I’m robbing them of the opportunity to learn and gain confidence.

3. Join his world. So often, we are working on helping my son fit into our schedule or norms.

To join my boy’s world, to understand and connect, is such a struggle. We, as his parents, consciously work towards this every single day.

I will be his place of calm. Sometimes that means sitting on the kitchen floor and taking in his deep butterfly or bumble bee breaths with him. And some days this will happen on five different occasions before breakfast.

  1. Embrace the chaos. The couch jumping, dresser climbing, spinning, bouncing, running, loud scripting and high-pitched screaming. I will let him enjoy that energy for the freedom and happiness it brings him instead of constantly trying to corral it.

In those loud, chaotic times I will remember what it looks like when his anxiety and frustration have taken over. If I pause in that wild happiness with him, maybe some of that joy will spread. We just have to let go, even the tiniest bit.

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  1. Self-care. OK this is a tough one. I am going to put value on every single family member’s happiness, including my own. If you are like me, the recommendation of fitting more self-care into your already-hectic life is more irritating than hearing the Baby Shark song 50x a day. It is so important though. “You cannot pour from an empty cup.” I know, I’ve tried.

6.  When all else fails, find grace. I will be prepared for every IEP/ABA meeting, every doctor/naturopath/audiology/dentist/speech/OT/blood draw/psychologist/counseling appointment. I will bring social stories, snacks, incentives, and toys. And I will give myself grace when none of that stuff works like I had intended.

7.  Look back. I will continue to look back to where we have been so we can celebrate where we are now. Progress can feel slow and discouraging at times, but I will not get lost there and miss all the growth and amazing new things happening every day.

8.  Slow down. What’s the rush? I’ve been that irritated lady stuck in a slow checkout line. Or the one pulled over for speeding because I was running late. When I am pressed for time and irritable, it affects everyone.

9.  Be kind. One of the best things that has come from sharing my son’s journey in autism is seeing how he has inspired so much kindness in so many people. Because of him, I will always take a moment to consider what someone else is going through.

10.  Be thankful. My children have given me new perspective and I am blessed to have been changed in the most wonderful ways. I’m going to remember that when a snack gets thrown across the car or a well-intentioned social story totally bombs.

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Happy New Year

B20DB3F4-EFB9-4FDB-B8C0-21D7197DA1DB.jpegGoodbye, 2018!
Many days this year felt as chaotic, fast and disheveled as the wake of a leaf blower. Or a hair dryer. Or something to that effect.
We untangled the idea that life can be good and hard and messy and beautiful all at the same time.
I’m so thankful for this blog. It has become the safe place for my midnight ramblings and daydreams to live, the avenue to organize thoughts, put together our puzzle, vent, praise and celebrate our sweet boy.
We are so thankful for the support we’ve felt from friends near and far, old and new.
Looking forward to continuing the climb in 2019.  Forward and up.

Christmas Magic

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This Christmas was special. We got to spend so much time with our friends and family. My cousin Tony even welcomed his baby boy, Max, into the world all the way over in China as we kicked off our celebrations in Oregon last weekend.

Our kids really brought the Christmas spirit to life this year. I don’t think we knew what we had been missing in previous years. I’ll admit, I have been quite Scrooge-ish in the past because, honestly, trying to get Wilson to engage and care was just exhausting. 

A few years ago, we could barely get him interested enough to open a present. Even the kind in a gift bag with one piece of tissue on it.  This year, however, our main struggle was stopping him from opening every present he came upon. 

Yes, this year was different. Both Wilson and Charlie wanted all the Christmas music (except Silent Night, for some reason that’s a hard NO for Wilson), holiday shows and books, and even waved “hello” every time we passed all the Santa decor that adorned the neighborhood yards. Our tree lights were lit for their every waking minute and the countdown to Santa and our extended family’s arrival was discussed daily. 

Charlie’s face when she realized that Santa ate all her cookies and the reindeer ate the carrots, too?! Priceless.

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The excitement in her sweet voice when she told everyone that Santa gave her a new toothbrush in her stocking? The cutest.

Wilson used to prefer to be alone, and this year he wanted to be on top of everyone, spreading happiness and probably a few bruises, too (he does NOT. Slow. Down.)

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He not only obliged us in wearing matching Christmas jammies (long sleeve! (Thanks, auntie!)) with his sis but he insisted on wearing them for days!?

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We had our share of struggles, and there were some memories made that Wilson was noticeably absent from. We are still finding a balance of when and where outings can be successful for him.  Tears were shed at one point or another by most of us, but all the beautiful, messy magic is what’s still weighing sweetly on my heart, even days later. 

Who knows, maybe next year we’ll even be ready to take on this Elf on the Shelf madness.

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Sensory-Friendly Santa, we are so thankful for you.

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Wilson was so excited when we told him we were going to see Santa.  He had done well with this same visit last year.  Our local mall allows appointments for children who struggle with sensory processing to be made before the mall opens for the day. This means no crowds or long lines and it’s calm and quiet. 

There is a super easy-going Santa and patient elves and you don’t have to explain any behaviors to anyone. Honestly, without this sensory-friendly option, we wouldn’t have attempted a Santa visit.

Wilson allowed us to put him in his nice (uncomfortable) clothing, even including his adorable reindeer sweater even though it had long sleeves and he hates wearing long sleeves.

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When we got out of the car in the nearly empty parking garage, we heard another family returning to their car with a toddler in tow who was in the midst of a knock-down-drag-out-screaming-meltdown. David and I looked at each other, and we smiled. I’m not sure why, I know that reaction seems horrible.  I think it’s because that has been us. That is usually always us. It’s funny how something so simple can immediately make you feel less alone.

We were a little early, so the kids played on the outdoor play structure while we waited.  The dreaded wait. Our boy struggles to wait for anything. Waiting means time and opportunity for that pesky, fun-sucking anxiety to sneak into his sweet little body and basically ruin whatever the wait was for in the first place. 

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It didn’t take long and he was done.  He started screaming, which was surprisingly loud in the nearly empty mall. He ran over and kicked a sign, then a wall. Kicking?  I remember making a mental note of this new behavior.

Saved by Santa, it was our turn to enter his little living room.  Once we were inside, the jolly man in the red suit might as well have been invisible. Wilson was compulsively searching for a train, I’m guessing one that he saw last year, which was not where he had left it.  It was all he could focus on. In his mind, and in his world, things were just not right.  His memory and intense preoccupations are truly incredible. And frustrating. 

This is autism.

The rest of his day was blown. It was spent counting, sorting and repeating phrases he has learned from shows in attempt to create order and reorganize himself.

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I had seen that going much better in my head. I found myself wondering if these kinds of outings are even worth it. 

Without this sensory-friendly option, we wouldn’t have come. We would have missed playing on the playground and this adorable photo that, even with the stressful memory attached, still shows a boy who has made SO much progress.

We’ll be back next year.

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Our Tribe, I’m So Thankful for You

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and an autism mom, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind and generous humans who constantly offer their support.

Our friends and family and friends who are family, you open your homes to our curious five-year-old to redecorate, climb on furniture, your laps and shoulders and oblige him in his relentless requests to be chased in circles.

You continually say “hi” and attempt to engage with our little man, even when you know he will likely not hear you and walk on by.

Somedays he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.

I am so thankful for you.

His teachers, behavior interventionists, doctors, therapists and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.

I am so thankful for you.

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His BCBA, you were the first one to tell me that it was going to be OK and make me believe it. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

I am so thankful for you.

His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

I am so thankful for you.

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The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

I am so thankful for you.

All of our friends, family and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story. You encourage, support and lift us. When you share our story you are spreading autism awareness and acceptance.

I am so thankful for you.

Charlie, aka little sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also love, include and protect him. You aren’t afraid to get right up in his face so he sees you, so he hears you, and you would never go to sleep without giving him a hug goodnight.

I am so thankful for you.

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Our little one’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.

You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well.

You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

I am so thankful for you.

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My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still I pray for more every single night.

You have forced me into a vulnerability like I have never known, and shown me all the amazingness that follows such a leap.

You’ve shown us how hard your world can be. Through frustration, pain, confusion and sleep deprivation you are still so happy in your soul. You’ve shown me this is not only possible, it’s just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

Wilson LOVE

 

Life Changes

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Have you ever had that feeling, like your world just stopped turning? Like you are standing still, but everyone around you is moving forward? So dramatic, I know, but this isn’t like in the movies when your whole life “flashes before your eyes” or when scenes from your past/present go racing by on a fast train or something.

When my son was almost two years old, the long road to his autism diagnosis began. This was also the point where my world quickly shifted to revolving solely around autism, and eventually felt as though it had stopped turning altogether.

This dramatic shift didn’t happen the first time his delays or concerns about autism were brought to my attention. When his pediatrician told me he had failed the autism screening at 18 months, I was surprised and worried, but hope and denial kept the real gut-wrenching fear at bay for a few more months. Surprisingly, my world was turning right on through the meeting with the psychiatrist where the diagnosis was officially delivered to us. By that point, we had been through months of evaluations, research and waiting and, while it still stung, we expected to hear what the psychologist had concluded.

I was scared, worried and didn’t care about anything else but getting him through this thing. Making sure that he was going to be OK. I felt helpless most of the time, as progress was happening all around us in classmates, our friend’s children, our daughter. But my sweet boy was stuck, and frustrated. Even angry a lot of the time.

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Friends would ask how I was doing and I would answer with how my son was doing. I would talk about his latest accomplishments, new behaviors or set-backs he was experiencing and then likely launch into the game plan for new therapies or diet changes.

Why would anyone talk about anything other than autism? I know, I was completely obsessed. When your focus is so narrow and on something so vastly complicated and very much out of your control…cue world stops turning.

I had taken on his autism as my own. It was heavy and exhausting and suffocating at times. It’s hard to think back on this time and for who/what I just wasn’t present.

I started receiving invites to workshops like “the Misunderstood Child” and reading articles on “Autism: The Invisible Disability”.   Invisible. This was the part that was so incredibly frustrating. Autism is not invisible. How could something that consumed my every moment be considered invisible?

Here’s how: while out in public, my three-and-a-half-year-old, non-verbal son looked like a big 2-year-old who seriously needed some discipline. The reasons behind his behaviors though, those were certainly invisible to the untrained eye.

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In our house, the walls are adorned with images of children sitting on the potty and poop in the potty in an effort to visually support his potty training challenges. Red STOP signs cover light switches and door knobs. We have locks on our fridges, cupboards, drawers and double locked exterior doors. Because eloping.

Sensory swings, balls and tunnels have taken over the playroom. His cute little bedroom has become increasingly stark over time as things have had to be removed for his safety. A changing table or rocking chair used as a balance beam? No more. Especially after that “Humpty Dumpty Phase” where he liked to “fall” off of anything he could: dressers, countertops, window ledges.

Autism is not invisible.

The scripting, stimming and eloping. The detoxing, night sweats, and waking in the middle of the night to him repeating things like “goldfish gone” with the same intonation and hand motions but with increasing intensity. The pain and frustration, the screaming. I see that so clearly at times I think it could break me.

The anxiety. It’s all impossible to ignore let alone invisible.

Getting past what meets the eye is where the good stuff lives. Like when his whole face and body lights up when he’s happy to see someone, something or somewhere. How sometimes he says goodbye every way he has memorized how: “Bye! Love you! See you later! Have fun! See you real soon!”

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How he doesn’t notice when someone’s angry or irritated. He knows happy and sad and is learning to empathize with those feelings. He tickles my feet all the time, even when I’m clearly not in the mood for it. I laugh, without fail, every single time.

How he calls hearts “surprises” and they are his all-time favorite shape. He got this from a Curious George episode about Valentine’s Day he saw years ago. He is gentle and kind all the way to his core and loves his family so much.

He sings a song to himself about 50x a day to fend off anxiety. When he is calm, this is so rare and oh, so special. When he is at rest. When he can just BE. His body is still; his breathing is steady. There are no lights or sounds chipping away at him.

That’s where we are now. Tucked into his sleep tent at 3am. I’m half-covered with his Thomas the Train blanket and waiting for him to fall back asleep so I can return to my comfortable bed and get some sleep. He has other plans though. He is excited to share this space with me. It’s quiet, peaceful and calm, so I don’t mind. I’m thankful to be let in and find myself thinking about how lucky I am, because it’s so easy to forget when the days seem hard.tent pic editI think he dozed off until he yells, “I want crackers!” Good Lord, this kid could literally start his day right now.

Our world never stopped turning. It changed. We have a new perception of hard work, perseverance and happiness. Autism has changed me. Sometimes I’m sleep-deprived, cold or short-fused, but I’m undeniably braver, stronger and better.

I’m so thankful for this little man. We are helping each other become who we are meant to be.EmmettFamily-9

 

Diet, Methylation and Supplementation

**ALWAYS talk to your doctor before changing anything in your child’s diet**

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Many of you have asked about the methyl-B12 injections we give to Wilson, and how/why they can be beneficial for children on the autism spectrum.

Vitamin B12 occurs in five different forms, each with their own unique metabolic role. Methyl-B12 and folate play a central role in a pathway called methylation.

Methylation is responsible for:

  • RNA and DNA (genetic material responsible for every function in the body)
  • immune system regulation
  • detoxification of heavy metals and other harmful substances
  • making glutathione (the body’s main detoxification enzyme)
  • production and function of proteins
  • regulating inflammation
  • making neurotransmitters like serotonin and dopamine
  • producing melatonin, CoQ10, carnitine, creatine, and choline

Wilson has a genetic mutation that prevents his body from proper methylation and detoxification. Vitamin B12 works closely with folic acid (a folic acid molecule must interact with the enzyme MTHFR to become 5-MTHF) this then can become methyl-B12. Wilson has a defect in the enzyme MTHFR.

Without proper methylation, the brain cannot be effectively fueled and toxic substances throughout the system slow development and processing. The brain is the only part of the body that depends entirely on B12 to detoxify.

“Studies have shown that 90% of ASD children have impaired methylation and 80% decreased levels of glutathione in their cells. Supporting and/or repairing the underlying impairment and deficiency translates into increased social, cognitive and language development.”

The really not-so-fun part: while methyl-B12 does come in several forms, injection is the most effective. We receive the injections in premeasured syringes and inject it just below the skin on his bottom. When injected into the fat, the methyl-B12 is slowly released and stays in his system continually at the same level. Other forms of administering the methyl-B12 cause levels to fluctuate throughout the body. Also, all vitamin B12 forms are absorbed in the small intestine, and many children with autism have an inflammatory bowel condition that affects the small intestine. This can inhibit absorption in the intestinal tract, especially at consistent levels.

So, every third night, we sneak into his room after he has been asleep for at least two hours (so he is in a deep sleep) and clean the site, inject, bandage and give him extra kisses goodnight. We used to try and do this during the day, but he could not stand it (mostly because we had to hold him down to keep him still.) Surprisingly, he rarely wakes up when we do the injection while he is asleep. The needle is very tiny; our doctor had us practice on each other so we knew what he would feel.

Some of the benefits we have seen: more spontaneous language, more complex sentences, increased vocabulary, enhanced cognition, increased awareness, more eye contact, responsiveness, and some improvements in social skills.

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Some of the possible side effects: hyperactivity, self-stimulating behavior, increased mouthing of objects, sleep disturbances, aggression, hitting and biting (this can be caused by frustration due to increased awareness). We have only seen a few of these side effects and they seem to come and go.

We took a break from the injections this past winter to be sure we were actually seeing a big enough difference to make it worth giving them. We had a really rough few months. I noticed decreased awareness, less language, increased irritability and less social interaction. We started the injections again in the spring and saw improvement, slowly, once again.

We began Wilson on the gluten-free/casein-free (GFCF) diet shortly before we began his methyl-B12 injections. We have stuck to it strictly and I believe this also has an impact on the improvements we have seen in him.

One theory behind the GFCF diet is that children with autism don’t process the peptides and proteins in gluten and casein very well, leading to “leaky gut” where the gut can leak into the bloodstream and, in turn, “cloud” areas of the brain. Not a ton of research has been done on this, or methyl-B12 for that matter. Studies are currently underway and we will hopefully have more information in the near future.

As we did with the methyl-B12, we will likely change his diet and add some dairy back in to see how he tolerates it now that we have a new “normal” with all his new supplements in his system for the past several months. It would be ideal for him to be able to eat a wider variety of foods, if possible.

Other supplements Wilson is on: Folate and carnitine (levels were low due to the methylation issue), iron, probiotics, vitamin D, and fish oil (Coromega makes a great one for kids that is orange flavored).

I must note that the benefits we have seen by having Wilson on these supplements and the GFCF diet are not always steady. He still has some good moments and some struggles. We’re always trying to figure out why the harder days or regressions occur. Even with supplementation and his diet, he still cannot process things like food dyes, chlorine from a swimming pool, poor air quality, toxic fumes, etc. as easily as other people do.

We’re always striving to find a balance for this sweet boy, one day at a time.

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**The GFCF diet and the methyl-B12 injections do not work the same for every person. Some parents have reported autistic symptoms improving while implementing this diet and/or methyl-B12 and others don’t notice any changes. Talk to your doctor about what the best option is for your child**

Moments of Weakness

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Moments of weakness will happen. This does not make you weak.

Wilson had the biggest meltdown I’ve ever dealt with today.

We had an appointment to see our Developmental Pediatrician, who happens to be located in the same hospital where Wilson had a traumatic experience getting blood drawn last month. I worried about this, but figured it would be okay because we were going to a completely different wing of the hospital. He recognized where we were as soon as we drove into the parking garage.

This is when the screaming began. He pleaded to go home, and “no doctor.” I told him we were seeing a different doctor and there would be “no ouchies” today but he could not understand.

I carried his flailing and screaming body through the parking garage, across the street and into the hospital. This is where his meltdown intensified. We would make it about five feet, me carrying him, before he would flail so hard or scream so loud we had to sit on the floor. I tried to help him take breaths like we’ve worked on before, but he was too far gone and wanted OUT.

It broke me to see him so incredibly scared. I sat down on the floor and cried with him, in the middle of the hospital lobby. I couldn’t see a way out of this situation, besides leaving.

We arrived to our doctor’s office to find a construction zone and a sign that they had moved to a different floor. SH*T. A hospital employee walking by stopped and offered to help. I told her I didn’t know how she could. She offered food or drink, but he already had his favorite snack and a juice box in his hands (I think we dropped every other object or article of clothing during this ordeal but he held on to those two things the whole time!) It was really hard to hear one another over his screaming, but we put together that she was actually from the Children’s Developmental Institute that we were trying to get to. She helped us find the elevator and took us in. We skipped check-in and the waiting room and headed right into the sensory room where we calmed down in the dark while watching lights in a sensory tunnel.

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I am beyond thankful for this woman taking the time to help to us, and for persisting when I wanted to give up, go home, and never come back.

Wilson said “no ouchies” on the walk back to the car, I guess he finally believed me! He was back to his happy self and moved right on with his day.

He is the strongest kid I know. And I am going to be the strongest mama bear he will ever know.

Tomorrow, we’ll get to work on incorporating new social stories, pretend play and visuals to practice in the coming months to help prepare us for the next visit.

But tonight, mama needs a glass of wine.

#autism

#autismawareness

#bekind

#strongasamother

 

The Balancing Act of this {Autism} Life

 

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It’s 9 a.m. and my toddlers are eating popsicles.

They are content (even quiet?) in their car seats behind me as we drive to ABA therapy. We are going on year three of “potty training” (I could call it a lot of other things) with my son Wilson, who is almost five years old and on the autism spectrum. He really pulled one over on me this morning with the new potty sticker chart by managing to sit and pee in the toilet four times more often than he would have on a typical morning, scoring a popsicle for himself as well as his little sister.

Oh well, it’s all about balance, right?

As parents, we all strive for a sense of balance in our children’s lives. There are the usual suspects: screen time, treats, sleep. If you are a parent of a child on the spectrum, there tends to be a few more items to add to the daily juggle.

You pack his food for the day (the same food you packed the day before and the one before that). You keep his snacks on hand, knowing full-well you can’t just pop into a restaurant or convenience store and find something he will consume.

You try to get him to taste new things but you also want him to eat. He has inherited your stubbornness and those hunger strikes are brutal for everyone. He knows the difference between chicken nuggets and tenders and how dare you serve one instead of the other? If you buy another brand, size or shape of his precious food he will make certain you regret it.

You sneak eight supplements in while keeping all the gluten and dairy out.

You plan and adhere to a routine (because that’s where he thrives) but also create space for him to enjoy some toddler spontaneity. Allow him freedom, but not so much that that he’ll wander off. Let him feed his curiosity but keep this fragile and fearless little human safe.

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You let him stim and enjoy scripting off in his own little world, but not for too long, or he won’t let you join him there.

You prepare for the battles you know are coming, like haircuts, blood draws, dental exams or finishing his food containing aforementioned supplements. You keep a reserve of patience for the obstacles you don’t foresee, like an altercation over his open urine sample (he wanted to pour it into the potty like a “big boy” and I needed to ship it off to a lab in Texas.) Or that time he flushed his soiled underwear down the toilet…

You enjoy the quiet moments and you fear them. If it’s too quiet, then someone is up to something, somewhere.

You teach him “I want” and “no” when you would rather he was saying “please” and “no, thank you”. When he requests something appropriately, you usually oblige because it took so long to get there. In the back of your mind you worry that you tend to give him anything he wants to avoid a meltdown.

You start to plan for the future, but it’s overwhelming. The unknown is terrifying, so you try to live in the present.

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You let him struggle. This, this one is the toughest. To wait. While he fumbles into his clothes or attempts to put his shoes on the wrong feet, you take pause instead of jumping in to do it for him. You hold your breath when people ask him questions and he struggles to think of a response, trying to give him a chance before answering for him.

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You are his advocate, not just for more, but also for knowing when he’s had enough poking, prodding, testing or hard work. The real balance is knowing you would do or try anything to help your child while having the awareness that you cannot do it all at once.

I know many of us never feel like we have found a sense of balance, but we will never stop searching for it.

 

Finding the Courage to Try

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Group activities for children on the spectrum can be hard. So far, we’ve had to pull Wilson out of swim school, soccer, and community preschool. Even birthday parties can be tricky. Wilson is so excited to be there, but he wants to open the presents and blow out the candles no matter whose special day it is. He cannot understand why someone else would get to do that instead of him. This was easier to manage when he was a toddler, but he is getting bigger. And louder.  I’ve tried bringing a present and treats for him as a distraction, and even a set of candles so he could have a turn to blow them out after the birthday boy or girl.  This hasn’t done the trick. We’re on high alert for the birthday song to start so we can redirect him before he potentially ruins a three-year-old’s special day.

When we attend events as a family, we typically divide-and-attempt-to-conquer and end up separated the whole time. One of us is constantly on the move keeping a close eye on Wilson, the persistent wanderer, and the other stays with Charlie, who is usually participating with the others at the event.

Wilson’s former preschool had a Mother-Son Game Night the other night. Typically, we do not attend these kinds of events anymore. I receive invites or hear about them from friends, with my immediate reaction being “this isn’t for us.”  I feel sad for my son, that because of his autism he simply cannot participate in these fun events like the other kids his age.  I briefly feel sad for me, too, and then I move on.

Wilson LOVE shirt

This game night stayed on my radar. I received reminder emails, saw posts online, and several friends asked if I was going. My answer remained a pretty hard “No.”  I am ashamed to admit this, but I actually toyed with the idea of going without Wilson. Just so I could visit with my mom friends that I hadn’t seen in so long.  I knew Wilson would not be able to participate but I was sad that meant I couldn’t see my friends either.  These are the times our life with autism can feel isolating.  I am so thankful for my sweet friend who encouraged me to bring Wilson (and didn’t judge me for considering to leave him at home!)  She said her son would love to see him and they would have fun running around.

I knew what would really happen. I would chase him the whole time, try to contain his curious mind from getting into everything, touching anything, and taking people’s things. I would attempt to quiet his shrieks and screaming as people stare (for the record, I do not blame people for looking, his screaming is impossible to ignore but the glances inevitably fuel the feeling of inadequacy for the inability to have control of my child.)  And any hope of a smooth exit? Not a chance.  This is why this kind of event is just not worth it.

But this time, it was.

We went, armed with tools from Applied Behavioral Analysis Therapy that we had been working on for the past few days. I had a little white board, flash cards, and snacks for incentive. Wilson sat down and earned stars by answering social and basic vocabulary questions that he had been working on in therapy and at home.

star chart

flash cards

Once he got five stars, he got to do what he wanted, which was DANCE!  We did this little routine several times over. He was so proud of every star he earned and excited to go run and dance on the stage in the school’s auditorium.

Wilson Dance

We left before the real games began but we stayed much longer than I expected we would. When it was time to go, I told him he had earned his favorite snack and we would eat it in the car on our way home. I prompted him to say “goodbye” to some of his peers, he did, and we calmly walked out, hand-in-hand. I was so proud of him.

I was reminded that night that it’s easy to give up, to stay home. It takes hard work to face obstacles and learn from them.

I am not saying we’ll be going to every single event we come across. Not by a long shot. Our life is still about balance and doing what’s right for Wilson and our family. I want to find the courage to do more though, and to never underestimate my little man.

Wilson Dance 2