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The Little Ways We Show Our Daughter on the Spectrum How Loved She Is

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I have been reflecting on love. Both how my princess shows this and how we ensure she feels and understands love. My princess has trouble showing any affection. As an example, the rarity of hugs is so sparse I only can remember a handful this past 12 months. Once at Christmas time and another before her surgery late last year. 

We don’t look for the “l love you, Dad” or the big embrace, nor the vocal approval, gestures or small niceties. The notion of sameness, predictability, safety is what is sought, and this is what is given. This gesture of love is received, and we see this love in her through reduced anxiety, her huge smile and her ability to adapt and overcome the little things because she knows it’s pleasing to her mum and dad.

The receipt of love is quite simple: it’s called adjustment, acceptance and seeking out ways our princess feels safe and protected. Love is seen again through her engagement and interaction with her siblings. The fighting and distance subsides, and closeness and plays enter the room. The rare and extraordinary occasion is celebrated not with balloons, high fives and cake; but instead, we have a quiet word, huge praise and a well done. In our family, love is infrequently verbalized from the children. Reserved with their feelings, it’s difficult to gauge where they are at and to explore their feelings further. We deliberately express our love loudly to all our kids with text messages, verbal “I love you”s and extravagant hugs.

The “I love you” is an important routine. It’s nonnegotiable. We want our kids to feel and know they are loved. Even though it may sound forced and at times unwanted or difficult to give, the message is important, and even though hard to ascertain, appreciated or at best tolerated. We have been exploring other ways to express our love for the kids, in particular, our princess, a girl who often misses social cues and prefers her company. We have had success recently, and although we have not seen many words exchanged we defiantly have seen love exchanged.

I have spoken several times of Jenna’s grandparent’s (my mum and dad) and the deliberate learning curve they journeyed after hearing of Jenna’s autism diagnosis. The questions, study, and willingness to learn has been nothing short of a Godsend for us. We went from feeling we were doing this all on our own to having a family that openly accepted Jenna for who she is and loves her the same regardless.

I thought I’d share some of the little but extraordinary feats they did to demonstrate the love they have for her. They brought a house 18 months ago and had discussions with Jenna about her wishes and what she would like in a house. Jenna’s response was “I want my own bedroom.” A huge ask and a huge imposition — I thought, “They will humor the idea but be unable to follow though,” as the request was vast and impractical. Mum and Dad set up a bedroom for Jenna shortly after buying the house. The bedroom became her safe place, a place her dolls live, a place to change clothes, etc. But it was bigger than this to Jenna. This bedroom was a place to escape the noise and in turn a place to be noisy. Mum and Dad created an extension of her home with them. They expressed to her she belonged, she was loved. Mum and Dad let me parent my child and coped with the meltdowns and extreme behaviors. They loved her and made it OK for her to express herself or be anxious. It doesn’t stop there, though. After a meltdown, Jenna is always quite sheepish, embarrassed and at times ashamed. Mum and Dad always took the time to understand the why. They also made the time talk to her and help her work through other ways to express concerns.

It’s an obscure way to show love, but one of my favorites and one Grandad takes much pride in is teaching our princess sarcasm, which often passes her by, sometimes leaving her embarrassed or uncomfortable. Dad patiently takes the time to explore the hidden meanings of jokes and even gets her to practice on him her latest script she is learning. In addition, Mum and Dad take the time to listen to her jokes. They laugh with her, not at her, and connect with her at her level. This is a special and dear time that she doesn’t do with any other people.

The little things scream “I love you” to Jenna. There is always Zooper Doopers in the freezer. Being a fussy eater, Mum and Dad have learned her staples of party meat pies and mac and cheese. It’s always offered, and it’s never too much trouble to cook her a separate meal or allow her to eat after the others have finished.

My favorite expression of love this year is time. Mum and Dad have invested in our princess. They have been there for her, changed plans for her and made room in their house for her. Because of this investment we have seen an acceleration of her skill set that we thought was years away. They’ve shown her love by giving her the best gift ever, time. Thanks, Mum and Dad.

Follow this journey on My ASD Princess.

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Learning to 'Let Go' and Watch My Son on the Autism Spectrum Be Independent

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Being a “helicopter mom” wasn’t something I planned on. I always knew I would stay home for a few years, if possible, but surly I wouldn’t have a problem with hiring babysitters and dropping the kids off for a few nights out or some quality time with my husband. This all changed when we realized our oldest son wasn’t processing verbal communication and other social queues, leading to an autism diagnosis.

We are currently just over two years into our journey, and our daily life and routines seem “normal” to us, and our son is thriving. We have arrived at a place of accepting the challenges, and it’s becoming our family norm, however out of the blue, a new set of fears and anxiety appeared with a vengeance, which seems to be the trend in parenting regardless of your child’s needs. You find your stride and then a new challenge, task or fear will set in with a new stage in parenting.

I have found this new “independent” child my most fearful stage thus far.

My son who struggled so much around age 2-3 has thrived so much in his two years of therapy and ear surgery. On many days we don’t think twice about his diagnosis nor notice he is different from many of his peers. Many of our friends at school and their parents don’t know of his ongoing journey with autism, and he is in a class with many friends and is so outgoing and very loving. He plays games and talks to his peers, he makes fart nosies and makes jokes and goes to the movie theater to see the latest animated flicks. I find myself getting teary eyed over things that are so simple, yet seeing him be connected and truly into activities, friends and having meaningful conversations is something I still am taken back by at times. This was the first year he stood up and performed at his Christmas concert at preschool without running off stage, trying to knock over the podium or simply seeing us in the audience and immediately coming over to sit with us.

With all of his accomplishments and milestones I can’t help but also be going through by far the most challenging stage, filled with fear and anxiety and it’s overwhelming. I must learn to let the “leash” out a little, just a little, giving him room to explore and play like other kids, alone, without me.

Even during the days when I was so scared about never hearing a sentence come out of his mouth and wondering if he would be able to communicate back and forth with us, I at least knew he would be safe. I was always there. I didn’t leave his side for the first three and a half years, ever. When I did leave him it was in organized and set circumstances with my parents or at school with his aide. Milo does great in environments he has already gone through. He needs to check everything out, open every drawer, look in every closet and throughly inspect his surrounding. He has mastered the maps of our local zoo, museums and friends’ and families’ houses as well as his preschool. He is in his bubble of comfort, or should I say “my bubble of comfort”?

My husband and I have always been constantly “on” him because he would run. He was a wind-up toy always wound. The moment you would put him down he was off. One day we wanted to see how far he would get from us at the beach (it was empty) without him looking back. We never got the chance to see when he would look back because he never did, and he kept running. I think he would have gone for miles if we would have let him. Another evening we went for a swim at out local athletic club. We were all sitting around the table eating dinner, my husband, myself, my parents and both my kids. We were in the middle of a conversation and all of a sudden Milo got up from the table and started walking towards the pool. My husband got up and we both started yelling his name to stop. We were just feet away from him and sure enough he walked straight into the pool. He was 2 and a half. We quickly got him out, and I remember my mom saying in a surprised voice, “He just walked straight in to the pool!” I smiled and just said, “Yep,” and started packing up our things to immediately leave and get everyone safe in the car, as it usually took me awhile to recover from safety events going wrong. It reminded me too much of what could happen if we weren’t always “on.”

These are just two stories of many that could have turned out really bad. We have “lost him” at our complex while walking the dog while my husband turned to say hi to neighbors, we have “lost him” when he ran ahead a little too far and ducked into the bathroom at the zoo. We never take our eyes off him, and yet he has found many opportunities to slip away. As he gets older, as he grows and develops into a little boy who wants more independence I’m trying to learn to accept that he is not that little boy/toddler who always ran away. He is now almost 5, he is very responsible, loves rules and for the most part follows them. He is learning boundaries, and I will try my hardest to let him have acceptable boundaries. My mind will never forget the little boy he was, and the sleepless nights that had faded away are returning with the notion that he is growing up and wanting independence.

He is not that boy anymore, but the lines are blurred for me of what “was” and what “is.” As we sign him up for kindergarten I find myself anxious and full of fear, for his school now has 60 kids and his new school will have 600. As he asks to play with the neighborhood kids his age or walk up to his aunt’s and uncle’s house, I find myself worried and not able to breathe if I can’t be there or see him.

I have recently signed him up for summer camps and other programs that don’t warrant me being with him. I know this is so important for his development, however I’m constantly in a state of worry. And I know I need to let a little bit of that go. I need to trust him. He deserves it, he has earned it, he deserves to discover and explore without the constant hovering of eyes watching his every move.

I keep reminding myself this is why we do what we do hours of therapy — therapy that is fun, engaging and has totally helped him learn to check in with us and follow rules, and although I’m not sure when I will let go more, for now I’m happy to say I’m trying. Inch by inch. I’m not comfortable with it, but as they say “great things never come from comfort zones.”

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Thinkstock photo by Murchundra

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On Autism Acceptance and Awareness Month, Accept I Am Autistic

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April is Autism Awareness/Acceptance Month, and I want to focus on the acceptance.

It has been about a year since I received the blessing of a late diagnosis of autism spectrum disorder (ASD). I wish to be accepted for all of what it means for me to be autistic. It means different things for different people on the spectrum. What does it mean for me?

I wish to be accepted for my difficulty when it comes to making eye contact. Please know I am listening carefully when you speak — possibly more carefully than other people you know. I wish to be accepted for having big emotions — even though you might think I don’t have any at all. And along with that, I wish for others to understand sometimes I have severe difficulty regulating those emotions. In fact, I used to self-harm; now I stim.

I hope you understand that while I have great empathy (I am vegan for the animals, after all), I sometimes struggle with theory-of-mind. This makes it difficult for me to know where you are “coming from.” I hope you know I am still capable of love — very much so.

Please accept I personally know a heck of a lot about a little. I have restricted interests and would love to talk with you for hours about them. I will also try my best to be interested in what your passions happen to be.

Most of all, accept I am autistic. Don’t assume I am neurotypical because I appear “normal,” hold a job, have an apartment, etc. I work very hard for these things and am very conscious of the efforts I put forth to achieve what many neurotypicals could take for granted. Embrace the fact I am different, and be embraced for your differences, too.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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When My Daughter on the Autism Spectrum Said, 'It Was a Very Bad Day, Mummy'

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I collected my 8-year-old daughter Little Miss H from school yesterday. “It’s been a very bad day, Mummy.”

Standing in the playground I knew it had been. I could tell by her gait, her facial expression, the purple bags under her eyes against her too pale skin, the sadness of her aura. She walked slowly towards me, scuffing her boots along the salted concrete of the playground. Her eyes downcast and her hand up to her mouth chewing her sleeve, her water bottle hanging forlornly from her other hand. I knew we were in for a tricky evening.

I suppressed the urge to say, “Stop scuffing your boots” and “Stop chewing your sleeve.” Instead I held my arms open for her. She doesn’t usually like public displays of affection, especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.

She didn’t come into my arms for a cuddle, but she was demure and allowed me to touch her arm.

Her water bottle broke that day and she was frightened she’d be in trouble. Mostly though, she was just sad. Disproportionately heartbroken actually. Change is hard for her. Saying goodbye to things is really hard. Her “stuff” keeps her grounded. To have a piece of it broken is like someone throwing a brick through your window. It’s devastating for her.

I reassured her the broken water bottle could be replaced.

We were due to take  her sister, Tiny Miss H, to an after-school activity and this was suddenly too much. With an unexpected burst of energy, Little was confrontational. These shifts can come out of the blue. The real issue was she wanted her safe space; she wanted to hunker down after an exhausting day.

The challenge for us is enabling Tiny to maintain after-school activities while at the same time supporting Little with her needs.

We managed to make it to the car.

Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress. That’s when she said, “It’s been a very bad day, Mummy.”

It turned out she had felt “mobbed” and crowded around in the playground and didn’t have the ability to extract herself. She didn’t know what to do, what to say, who to go to for help. She’s carried that with her all afternoon.

The physical toll it took on her was visible. She was anxious, stressed and absolutely exhausted.

This on top of the broken water bottle made it “a very bad day.”

Within the seven-minute journey home, she said it was “a very bad day” about 12 times.

This is called echolalia; repeating herself is a form of stimming. It helps her cope with anxiety.

When she has bad days we do a “Mummy squeeze” to get her from the car to the house, and once in the kitchen we have a prolonged super-tight cuddle. She is so strong sometimes it hurts; I feel like a tube of toothpaste being squeezed, I can barely breathe. I squeeze back as tight as I can. “It was a very bad day,” she mumbled into my chest.

This helped her calm down and I was able to persuade her that while Tiny attended the Rainbow’s Pajama Party, we would buy a new water bottle.

“It was a very bad day,” she muttered later as she rifled through some books.

We successfully deposited Tiny at her pajama party but forgot her cuddly toy and blanket, which did not make Tiny happy. After that, I tried to persuade Little to walk with me to the butchers before going to buy her bottle. Little is normally reluctant to walk anywhere so I expected her to say no. Instead she said. “It was a really bad day, Mummy.” She was so well-behaved in the butcher’s they gave her a fudge. She decided it had been worth walking. “Still a bad day?” I asked. She raised and eyebrow, “Mmm” she shrugged, “it’s getting better.”

At the supermarket where we were buying her bottle, I persuaded her to make a practical and useful choice that would withstand at least some playground action. We’d been playful and chatty walking through the store. Things seemed to have turned around. I was still on edge, keeping it light, keeping her happy. Then we bumped into Tiny’s class teacher who stopped to chat. Little Miss went quiet and couldn’t make eye contact. Out of the context of school, her confidence had melted away and her anxiety kicked in. To a stranger this would appear as “shyness,” but it’s different. Selective mutism is an extreme form of social anxiety that results in an inability to speak. It is involuntary and more than simple shyness. I’m proud, though, as she did manage to squeak something to me as the teacher walked away. Once we were safely alone she was chatty again.

On the way out, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again. Anxiety making her repeat all the words. Echolalia. In some ways the opposite from selective mutism. Also anxiety-driven and not necessarily “appropriate” at times. I could see the anxiety ramping up so I needed a quick distraction. Her forte is maths, so her job was to tell me how much I still owed each time I produced a coin. That busied her brain, but in between each amount, she still repeated the total in a different voice. The cashier was patient and friendly complimenting her on the maths. The fact there was no queue and no one else around at that moment helped us enormously. I didn’t feel stressed or self-conscious, and Little Miss did her thing.

Back in the car she was relaxed, so when she asked for water and I didn’t have any, I suggested she run back in to buy some. My genuine intention was to buy time while I finished putting something away in my bag before going back in myself, but to my utter astonishment she said, “OK!”

So we talked about what she would do, where she would go, how to choose what she wanted, where she would pay. We talked about the change she’d wait for, the route back to the car and that I would not move from the spot I was in. We counted the stalls where we were parked for her to reference if necessary. It was a huge amount of information we covered.

She hesitated. She took the coin. She ran. She went around the corner. I watched and watched and watched, heart hammering and holding my breath until finally she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.

She had gone round the corner to the door of the shop, walked in, turned right to the fridge and grabbed the water. She stood in the queue with two people in front of her and waited calmly, “Feeling very nervous, Mummy,” and when it was her turn the same lady recognized her and helped her through. I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “seven spaces down.” She climbed in, out of breath, and asked me to open her water. “I’m so proud of you darling,” I told her. “I’m really proud of myself,” she said.

She did it. I smiled with tears streaming down my face as we drove to collect Tiny.

“It was a very bad day, Mummy,” she told me at bedtime, “but it ended well.”

Follow this journey at H2Au.

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My Review of the New 'Power Rangers' Movie as Someone on the Autism Spectrum

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Warning: Spoilers below…

Growing up in the ’90s, I was completely obsessed with the “Power Rangers” TV show like many of my peers were. To show you how far my fandom goes, one of my first crushes was on the Pink Ranger and one of my first Halloween outfits was dressing up as The Red Ranger when I was 6. This is why, when I heard the news they were coming out with a brand new Power Rangers movie, I was very intrigued to say the least.

Then I heard through countless news stories that the Blue Ranger in the film has autism…

At first I wasn’t necessarily sure how to feel about it. Most people I talked to before going into the film have critiqued it, asking why an autistic actor wasn’t cast in the role. Others I’ve talked to wish the Power Ranger was a female character on the spectrum based on the lack of female characters with autism in our entertainment industry.

While I agree that we do need more autistic actors in entertainment today and the need for more female characters on the autism spectrum, my overall review of this Power Ranger with autism was positive.

RJ Cyler, who plays Billy AKA The Blue Ranger, did his homework and was one of the standout characters for me in this film. From the earliest moments of the film, we learn that Billy is on the spectrum when he
confesses to Jason AKA The Red Ranger. One moment in particular that touched me during this dialogue was Billy telling Jason, when sharing about his autism diagnosis, that “my brain doesn’t work like yours.” Jason responds, “That’s not a bad thing.”

Often in our community this is a common expression of how those on the spectrum feel. I know that’s how I felt growing up, and in my opinion, the moment was expressed with a lot of class. While our brains may be wired differently, we all have a longing to connect with others in some way. It may not be obvious at times, but
Billy’s wanting for friends is something that resonated with me as someone who grew up being limited in my social abilities.

Throughout the rest of the film I recognized more signs of Billy’s autism diagnosis, from the need to have everything lined up (his pencils on his desk) to feeling uncomfortable being touched by others. Billy also has a very good mind for numbers and was able to indicate different dates and times certain situations happened. At times it felt like his character may have fallen into the “Rain Man” stereotype, however, I didn’t believe it was stressed upon to a point where it felt like too much.

Mainly, Billy’s role was refreshing as he reminded me of several of my mentees who are on the autism spectrum. These individuals are loyal and often honest to a fault. While I applaud the film for giving us one of the first superheroes with autism to be portrayed in film (as many people with autism at times connect autism as their “superpower”), I hope this spotlight will give us the opportunity to discuss the entire spectrum of autism.

As an autism film consultant, I’ve worked on two films with two autistic characters. One of them was the 2011 film “Joyful Noise” where Queen Latifah’s character in the film has a son with Asperger’s syndrome. He knows a great deal about music and is also very bright. The other film I consulted for was the 2015 film “Jane
Wants a Boyfriend
” featuring a woman character with autism who’s trying to find her first relationship. She has a knack for costume design.

While I believe these roles are terrific, I also believe we need to make sure the stories of more autistic individuals and families are being told as well.

As for the new Power Rangers movie, I recommend it to not only the autism community but also anyone who is a fan of solid action movies. As they talk about the potential of making sequels, now I’m excited to see how they may be able to develop Billy’s character to discuss even more of strengths and challenges as someone
on the spectrum. I know I’ll be part of that group going to the theaters to see it.

A version of this blog originally appeared on Kerrymagro.com.

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Photo source: YouTube video

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The Moment I Suspected My Child Could Be on the Autism Spectrum

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My son, Donovan, and I held hands as we walked to our neighborhood park. I talked and he listened and smiled. It was a gorgeous day. The sky was blue and clouds were spread out here and there across the sky. It was a hot day, but not the type of humid that makes you feel sticky, which is expected for the middle of summer in Chicago. I remember every detail of that day because I feel it changed our lives forever.

Although the playground was still out of sight, the abundance of giggles and playful screams told me there were more than a few kids at the park. I started to get a little nervous. Donovan had been diagnosed with an expressive speech delay at 2 years old; he had difficulty holding conversations, which made playing with kids his age a challenge. Some kids wanted to know why he didn’t talk the way they did and some had even laughed at him when he repeated the sounds they made and it made him sad.

I wanted trips to the park to be just as fun for him as they were for me when I was little. I took him out to play before noon hoping there were fewer children around, but we were facing a park full of climbing, running and jumping kids who’d all want to talk and play.

Donovan walked through the park gate, sat down on the bench and stared at his shoes. I knew I could either take him home or help him face his fears — so I encouraged him to play.

He wandered over to a group of kids who were in the middle of a game of tag and within minutes he was running back and forth chasing and being chased. He was having a really good time. Then the game stopped. One of the older boys wanted to play soccer. He set up cones, grabbed his ball and asked if my son could play, too.

Donovan joined the game but he had a difficult time. At some point the kids stopped their game and all eyes were on my son. I knew something was wrong.

Many of the strategies I was using to help my son communicate came from websites for children with autism, so I was becoming increasingly familiar with the traits. I looked at my adorable little 4-year-old son and began to suspect autism could explain his difficulty communicating and interacting with others.

I believe my son experienced his first meltdown caused by sensory overload. I knew it was best for us to leave. We went home and I gave him a bath. After, he sat down to play and within minutes had fallen asleep on the floor.

As he slept, I called hospital after hospital in hopes of getting him in for a developmental evaluation. I was told over and over again there was a waiting list and the earliest appointment was 6 months away. Thankfully, a sympathetic speech therapist found a way to squeeze my son in her schedule just a few weeks after the episode in the park. Occupational and behavioral therapy were not as easy to get into.

My son was diagnosed with autism just after his 5th birthday. I can’t help but wonder how different his life would have been if he’d been diagnosed earlier. Now, as I reflect on the years leading up to the moment at the playground, I can see the subtle clues I missed. Things like not crying after an especially hard fall, spinning in circles without getting dizzy or the cute but unusual way he’d occasionally squint his eyes while walking around the room. These were possible signs of having a hard time adjusting to the environment around him or craving stimulation, which can be seen in autism.

I can’t begin to count the number of people who told me to wait to seek out services for my son; they thought he would eventually grow out of his behavior and one day speak on his own. In my opinion, waiting is not an option. I believe early intervention helps put children on the path to success. As a result of the services he’s receiving, my son is learning how to manage impulses and communicate effectively. Today he’s a bright 7-year-old who loves school and enjoys playing with other children at our neighborhood park.

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Photo credit: Rebecca Sinclair

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