A Year of Great Strides

 
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If you told me 3 years ago that my daughter would one day be talking in full sentences, dressing herself, and proudly walking her little sister to class, I wouldn’t of believed you. Around 18 months, Olive had started speech therapy. By two years old she had been evaluated, and diagnosed with autism. While we were happy to finally have answers, watching my child struggle and feeling helpless was the hardest thing to endure. In the beginning we were told she had severe autism and was non verbal. She didn’t point, babble, or respond to her name. As an infant she would vigorously shake her head back and forth. I was terrified she was having seizures, but it was later confirmed that her head shaking was all voluntary muscle movement. This continued but gradually turned into ‘flapping’ and other means of stimming. She would do this when she was excited, overwhelmed, or trying decompress. She wouldn’t make eye contact, but was always extremely friendly and outgoing. As a toddler she would purposely bump into things or people. I would catch her sandwiching herself between couch cushions and pillows, or flipped upside down on her head watching television. It took a long time to figure out what worked for her. She loved playing in the pool and taking a bath, but would cry every time she got out. Certain clothes she won’t wear, like jeans. She has always been under responsive to touch, and even pain. A lot of this was explained to us when Olive was diagnosed with sensory processing disorder. This explained a lot of her behaviors and texture preferences. She craved compression and would find ways to “sensory seek”. Olive’s diet consisted of about 4 or 5 foods, cooked and cut in a precise way. She struggled with over stuffing her mouth, or would refuse to swallow her food. By the time she was 3, she was having serious food aversions. She would gag while eating, struggle with swallowing, and refused eat food at some points, and I could never understand why. Unfortunately, this caused her to lose weight and added to her already troubled GI system. Potty training did not seem likely, and she was constantly in extreme discomfort.

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When Olive entered public school she had only previously been at home with me and her younger sister. She started kindergarten last year, and was in a main stream classroom, and received therapies through the school. I had prepared for the worst and hoped for the best. That year she learned a lot, and her speech took off. She struggled a lot with the routine, and even more so when the routine was broken. She would have meltdowns, and become unconsolable. It would take one seemingly small incident that could set her off into a meltdown. I would get calls and emails saying she would be having a hard time, and I would go pick her up from school. By the end of the year at her last I.E.P. meeting, we were told she had not met a lot of her requirements and would not be moving forward. Even though we knew it was best, it was still hard to hear. We are now into our second year of kindergarten, same teachers, and the same classroom. This year has been completely different than the last. She’s right where she needs to be. I have been absolutely blown away at how much she’s learned. She’s counting, spelling, reading site words (a lot of them!), writing her full name, starting to write sentences, and her speech is has improved so much. Socially- she’s been playing with other kids, and making new friends. She’s learned the days of the week, and months of the year. And most importantly she’s conquered the majority of her I.E.P. goals for the year. This year her and her sister did dance and soccer, and love it. She’s lost 4 teeth, and genuinely got excited to see Santa. Seriously what more could I ask for?

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Even with so much progress being made, looming in the back of my head is the fear of the uncertian future. It wasn’t until my daughter was diagnosed with autism, that I became aware of just how unaccepting and dismissive people are of what they don’t understand. The idea of my daughter growing up in a society that views people on the spectrum as ‘broken’ or in need of an antidote, leaves me feeling angry. I hate that there are people desperately hoping she’ll “get better”’ and “won’t be autistic anymore.” Meanwhile, a large part of society thinks ‘pity’ is a form of compassion- it’s not. It’s so frustrating. I don’t want people to feel sorry for me, or view my child as some sort of burden. Her and her sister are my whole world, just as any parent feels. And I 100% love and accept her as is. My concerns mainly fall onto the lack of acceptance and inclusion there is for the autism community. I don’t want to live with this fear that my child is being made to feel less, or treated unfairly for being different. People shouldn’t have to fit a certain mold to be considered worthy or treated as an equal. People on the spectrum are at a much higher risk for depression, anxiety, and suicide. They are more likely to be bullied and subjected to abuse. I can’t help but be alarmed and concerned for the future. Honestly, all you can do is take it one day at a time, and hope the rest eventually falls into place.

 
 

6 Things To Never Say To An Autism Parent

 

Over the years I’ve heard it all, from “Are you sure she has Autism?” “..but, she seems so smart.” and my favorite, “I’ll pray for you.”. No matter how much time passes, it never fails, someone unintentionally (I assume.) rubs me the wrong way. Instead of getting mad, and wasting my energy on people’s ignorance, I chose to put together a few comments and suggestions I could do without. However on the flip side, I do understand that a majority of people don’t realize they’re being rude or hurtful. And my only hope is that I can help clear up why some of these seemingly innocent remarks can be hurtful. Behold, 6 things you should never say to an autism parent-ever.

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“I’m Sorry.”- The last thing you want to hear upon telling someone your child has autism is, “I’m sorry.” While it may be an understandable and honest reaction, it’s extremely hurtful. Saying you’re sorry about my child is like saying there’s something shameful about having autism. Or that you pity me because ‘unfortunately’ my daughter has autism. I assure you we are extremely proud of our daughter. The only thing I’m sorry about, is that the world can’t be a more understanding and accepting place for her and others alike. Instead of apologizing for my child’s existence, try engaging differently. Asking questions and showing genuine interest won’t offended anyone, I promise. You can ask about their child’s interests and what autism means for their family. If ASD isn’t something you’re familiar with, let them know. This can be a learning experience and doesn’t have to be awkward.

“I Don’t Know How You Do It.”- This bothers me for numerous reasons. Mainly because it’s offensive. What I hear is that you pity me for being subjected to ‘unimaginable’ circumstances, when truthfully if faced with the situation, you too would rise to the occasion. Everyone thinks they aren’t capable until it happens to you. So telling me how I’m a super mom because I manage to love and support my kid, who happens to have autism isn’t a compliment. And I know this comment is meant to praise me on how ‘hard’ things appear and at times actually are, just know it doesn’t sit well. I don’t want my child to be made to feel like some burden on me, when that’s the furthest thing from the truth.

She’ll Eat If She Gets Hungry Enough.”- Actually she won’t. This is so frustrating for so many reasons. A lot of people aren't aware that autism usually comes with some co-existing conditions, like sensory processing disorder. Every meal is either a struggle, a pleasant surprise, or me begging my child to swallow her food or eat. Unless you’ve had to have your child on a specialized diet, or your child has an extremely limited diet, or your child is unable to feed themselves independently, you just don’t understand the heart break. Take a second to imagine having to watch your child’s weight drop drastically, endure G.I. issues daily, or seeing your child struggling to swallow their food, and gagging while trying to eat. I know your advice is meant to helpful, but know it’s just extremely frustrating.

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“She Doesn’t Look Autistic. Are You Sure?”- This is the most common response I receive after telling someone my daughter is autistic. “She seems normal to me.” Let me break this down for you. Telling me my child doesn’t ‘look autistic’ for one is a back handed compliment. This isn’t a compliment. I repeat THIS IS NOT A COMPLIMENT. Besides clearly having an extremely narrow view of what it means to have a disability (an invisible one at that.), you’re completely minimizing a person’s autism. You’re minimizing the hard work it takes to ‘appear normal’ to you. Please don’t minimize my child’s autism. It has taken many years of trial and error, a series of therapies, and an ocean of tears to be where we are today. Receiving a diagnosis isn’t as easy as you’d think because autism is such a vast spectrum. Some people have spent years just to finally receive a diagnosis and support. Autism is every day. There is no off switch, just better days than others.

“She’ll Talk When She’s Ready.”- This has always been painful to hear, especially knowing a large number of people with autism are non-verbal. Coming to terms that you might not ever hear the words ‘I love you.’ or ‘mama’ is tough. It’s something most parent’s won’t ever have to think twice about it. It’s the kind of thing you just have to take one day at a time. Now imagine strangers and family members in denial of your child’s autism, bombarding you with unsolicited advice. The uncertain future is hard enough to combat, the last thing I need is someone chirping in my ear, “Don’t worry she’ll start talking when she’s ready.”

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“She’ll Grow Out Of It.”- No, no she won’t. And that’s okay. I understand people say this for numerous reasons. Either they don’t understand autism is a neurological disorder that generally comes with other co-exsiting conditions, or they’re in denial. Not that children on the spectrum can’t flourish through therapies and hard work, but overall these services exercise and better a person’s the ability to cope, resolve, and redirect in an appropriate way. You can’t cure autism and you can’ just re wire someone’s brain to work a certain way. Autism doesn’t just vanish, so when you ask me “Is she still autistic?”, you’re essentially wishing away something very much apart of her whole being. I don’t love that my child has autism, but I do love my child as a whole.

 
 

Progress and Acceptance

 

Olive’s last I.E.P meeting went really well. I went fully prepared for the daunting task of reviewing all her areas of struggle. I normally dread these meetings just for the fact I generally leave feeling upset, facing just how far behind she truly is. This one was different. I was told she was doing wonderful. In areas like math she was at the average percentile. Since school started there has been no issues with transitioning classes, or changing activities. She’s been playing well with others and appropriately. She is making friends! There has been no meltdowns, and she seems genuinely happy to be there. To my surprise they decided to remove behavioral therapy from her I.E.P, they see no reason to continue when she has been doing so well. Olive now also spends about 90% of her time in the classroom being amongst her peers. It was so hard not cry tears of joy upon hearing the great news. She will now be primarily focusing on speech, language skills, reading, and occupational therapy. Olive was non-verbal for most of her life, and has delays in certain areas of speech. This past year, more than ever we’ve noticed her speech being ‘normal’ one week, then kind of become jumbled by the next. She has a hard time with ‘Th’ and “S” sounds. She also will sometimes pronounce part of a word- leaving off the ending sound. But so far she’s moving along at a steady pace, continuing to engage, and make the most out of her therapies.

Yesterday I was at the grocery store, and struck up a conversation with the cashier. We were discussing the outrageous costs of therapy, and medications. She had explained to me how her daughter has a condition with her thyroid, that also effects her brain. She has to take medication daily to keep her well and functioning. The medication unfortunately is very expensive. As we wrapped up our conversation, I turned to leave and another cashier approached me. She told me her sister has Autism. And then proceeded to tell me how smart and talented she is. She told to me about her sister’s Etsy shop and the beautiful things she knits. She shared how excited she was for sister to finish knitting her Christmas gift. I couldn’t help but to feel compelled to cry as I watched her face light up, as she told me her sister was only one semester from receiving her masters degree. I see her eyes begin to water as she tells me how proud her and her family are. I at this point have become completely moved by the out pour of love and admiration she has for her sister. It took everything in me to not cry. As I walked out the store and then to my car, I finally let myself feel. You’d think after 4 years I could carry a conversation about Autism without it hijacking my emotions mid sentence. I came home and cried some more. I wasn’t sad or even reflecting on my own situation. I was just genuinely happy to hear someone with Autism happy, thriving, and appreciated.

That’s something I’ve noticed in this journey as time goes on, it’s become less about how to ‘fix’ my child and more about promoting acceptance and awareness. It’s celebrating the little things, and finding joy in another person’s accomplishments, regardless of what your personal situation is. In the beginning I would feel jealous and even sad when I’d see other children doing so well. I stopped comparing my child to other children and stopped being bitter. Everyday I would feel hopeless when I thought about the unseen future that lies ahead. Instead I started taking one day at a time, and choosing to be happy. Yesterday was so much more than just being moved by someone else’s story. It showed me how far I’ve come in my own personal journey of acceptance. I’m not happy my child has Autism, but I’m not angry anymore either.

 
 

Dear Parents, You Are Human

 

Parenting is no easy feat. It’s messy, unpredictable and at times exhausting. Throw in Autism and a couple co-existing conditions into the mix, chaos is inevitable. No one quite understands the long sleepless nights, the random spouts of aggression, witnessing your child struggle daily, the endless list of appointments and therapies, or the fear you carry daily about your child’s future. The weight of all the hard questions with no concrete answers, can leave you feeling drained or even angry. It’s okay to admit that Autism is hard and you feel you are at your wits end. Your harsh and honest feelings in no way over shadows your love for your child. You are still a good parent. You are allowed to have bad days where you just want to curl up in bed and cry. You’re allowed to feel a vast array of feelings without guilt. There’s nothing easy about Autism, for your child or for you. Ignore the sugar coated social media posts, and remember these people are only choosing to show the positive aspects of their lives. No one’s life is perfect, and no one has it all figured out. We are all just doing the best that we can, and praying for a good outcome.

A lot parents carry guilt for harboring feelings of sadness or anger in regards to Autism. As if you’re not allowed to feel drained after a meltdown, or you shouldn’t be upset when your day turns sour due to a sensory overload, or you that you don’t need time to decompress yourself. None of this true, you’re allowed to feel. Your love for your child doesn’t diminish because you are feeling angry about your child’s epilepsy or over whelming sensory issues. You can feel that way and still love your child more than life its self. You can still be a loving parent and feel sad about the tough stuff, because after all you are human.

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Take your pain, and your overwhelming sadness at the moment and face it. It’s okay to be mad or even angry, but don't dwell on it too long. Recognizing your emotions isn’t the problem. It’s what you do with your feelings and how you express them that matters. Darkness tends to spread rapidly inside us at our most vaunrerable moments, causing us to sometimes get stuck in the dark. Acknowledge it, wallow in it as long as you need to, and then leave it behind. There is no heavier weight to carry than anger, resentment, and sadness. It will weigh you down, and wear you out, until there is nothing left. And honestly I’ve felt that way myself more than once. It’s not an easy hill to climb, and takes time to come back from, but it’s not impossible. A great parent never gives up, even when faced with the seemingly impossible. Accept your feelings for what they are and then move on. Work through what you’re feeling whether that be through talking with a friend or counselor, or just writing down how you’re feeling at the moment. Don’t just leave it to settle and fester within you. Don’t get left in the dark. And most importantly don’t miss out on the amazing child in front of you because you’re too busy being mad about something you have zero control over. LET IT GO.