Autism has to ability to cripple a child's ability to interact with peers. The markers of this disorder truly prevent many social connections from being forged because of a child's inability to either confront others socially OR they are unable to interrupt social cues for the other to make communicating effective. Many of us parents learn of their abilities to socialize. With parents, it comes easy for many of the children. But when we step out and see our child become seemingly withdrawn or alone, it hurts to know that our loving, funny talkative fellow has no words to say to another. This in turn leads to other people believing our child cannot do things rather than believing that they need a little help in the right direction. So, as parents, there are steps that we can take to ensure that our little autistic beauties can find their voice among others.
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For me, I just sort of fell into special needs parenting as I'm guessing most of us do. That's not to say we didn't know beforehand. I did not know about Seamus, nor was there any way of knowing. But still, you are get genetic testing done while you're pregnant, you aren't expecting that test to fail. You aren't prepared for that phone call from the doctors telling you something is "abnormal" with one thing or another. It takes you by a landslide. All at once. What do I do? How am I going to handle this? What does this mean for my family's future? Honestly, no one can blame you either. Immense, vast, unending. These don't even start to come close to the amount of stress and strain and struggle you'll go through as a special needs parent. Once you choose to weather the storm, you'll find that it isn't all doctor appointments and blood works and therapies; some times this is going to take your breath away.
Over my city, I've been seeing more and more billboards with this same message. For some reason, when I first saw it I didn't even really acknowledge it, but the more I looked at it, the more angry it made me. Angry, why angry? Well, lets just say the generalization of autism is more harming than good. Autism is more than eye contactThere is so much more to a child than eye contact just like autism is much more, or less, than avoiding eye contact. Overall I feel that it sends the message that autistic children aren't social. Though they might not be obviously social, in their own ways they try to interact with others. Autism impairs the ability to connect, and appropriately interact. It doesn't make it impossible. They aren't "withdrawn". People with autism are in their own world of overwhelming sights, sounds, smells and tastes which can make it difficult for others to break that barrier. Avoiding eye contact with someone is only natural when they aren't in that world.
Autism used to be a scary word to me. A four letter word, with three extras. That was until I got Hilo's diagnosis. Now autism isn't anything but an adjective. Descriptive but not the entire noun. Hilo isn't autism only. And my first born son isn't scary. Truly he's been the most happy, quirky, loving child I could have ever wished for. His diagnosis hasn't consumed the child he was before the "A-word" was said. Hilo is Hilo, with a small side of autism along with many other words I'd use to describe him.
Experts say that reading 20 minutes a day with your child(ren) is critical for their development. It can give them the motivation to become readers themselves, expand their vocabulary, encourage and strength concentration, and most of all, it encourages your child's imagination. All of these things are great for young people looking to start their careers as students. Books are a central theme is most all elementary schools. My son's preschool centers each day around a certain book they've read and the activities they do are based around the theme of the novel. It connects it all together for maximum learning. Even at home, books can make a child relate to their own lives from what books they've read. So do them a favor, and get in some good bonding time and read! So now, here it is. Our list of favorite children's novels for preschool and kindergarten age! Stand Tall Molly Lou Melon - Patty Lovell Extraordinary Jane - Hannah E. Harrison Llama Llama and the Bully Goat - Anna Dewdney Sleep, Baby, Sleep - Maryann Love 10 on the Sled - Kim Norman Once Upon A Cool Motorcycle Dude - Kevin O'Malley ABC Look at Me - Roberta Intrater The Night Before Preschool - Natasha Wing The Gingerbread Man - Mara Alperin It's Not Easy Being Big - Stephanie St. Pierre All of Baby Nose to Toes - Victoria Adler Room on the Broom - Julia Donaldson Our Experience With bedtime readingAs a young child, Hilo always loved to be visually stimulated. He loved books. Pictures, and colors, and especially the TV, he loved it all. He'd stare at his birthday cards and play with them like toys. But one thing he'd never let us do is read. Hilo would grab the book from us, zoom through the pages, and move on to the next thing. He never wanted to hear the story, just see it. So it wasn't until he was about two years old when he started speech and occupational therapy along with Early Intervention. We were learning some tricks on how to wind him down. We had the special brush to use to transition him, a weighted blanket, a weighted vest, and a calming atmosphere. Before bed, he'd still be a basket of crazy. However, we found that when getting him ready for bed, if we had him lay down in bed and listen to books he'd calm down and stay down. Not that he wouldn't get out of his bed a million times. But he didn't wind himself back up to a maniac. Hilo would simply want us to lay him down again and read more books. I guess he just decided (as most things with autistic kids go) that he wanted to hear the stories. So now, it is a routine we do every afternoon before nap and before bed. It works wonders! I swear by reading. He learns so much. I try to make it a little interactive too, to encourage more of the skills that his speech therapist is working on. We've learned a lot about animals, and counting, and all sorts of different things. It's a great tool for a child truly!
Parents. It is all too easy to get swept away in the responsibility of caring for your child that you don't take care of yourself. Don't feel that guilt. Well, okay, you're going to feel it no matter what but you need to take a break and get a piece of your sanity back. There isn't anything wrong with giving yourself time, taking a shower, reading a book, binge watching House until you fall asleep. #NoShameGame . Though your kids should always come first. Always. It's okay to put them behind you. It's okay to sometimes look at yourself and go, "Yes. I will lock myself in the pantry and do some manic meditation." Now seriously though, you need time to yourself. Time as a couple. Time to enjoy the life you love so much, just alone. So here are my little daily helpful hints to keep yourself sane to manage your life looking you've got it all together. 1. Nap time is my time. When the kids are napping, I let that time be for me. Whether I want to write in my novel, or watch Netflix, or fall asleep, I do what I want. Laundry does not get done. Dishes are not loaded. Counter tops are not scrubbed, nor are the toilets. Rest time is rest time, period. 2. Respite care is a God-send, I don't care what you say. Truly, I love respite care. It is by far the best thing every invented and I'm OH SO GRATEFUL to it being there for me every week. However, I know there is much resistance to respite care in the special needs community I have found, from many posts about it in groups. Many mothers don't like it. I love it. The respite care providers are amazing people. They fit good in our family and I trust their abilities completely. If something about them just makes me uncomfortable, I'm within the power to say, "No. Find someone else." Guess what? It's no big deal. They love to help find someone better. Now I can rant and rave all over this post about respite but I'll leave it for another time. Just check it out. I swear by it to get some freedom. 3. Kind of goes hand in hand with respite care (unless you have a reliable babysitter or family members) but dates! Dates with your partner, or general dating. You have to schedule it, otherwise things will always interrupt. But by setting aside time for your relationship or yourself, you are going to feel like yourself without your demanding children. Not that loving your children or attending to their demands is BAD, it's just hard to separate yourself from your identity as a mother or caregiver. 4. You have to attend to your daily needs, too. Shower. Eat. Put on deodorant. All of it. 5. Meditation or yoga. Either works for me, but it might depend on your lifestyle. Yoga is a bit demanding in the day if you don't have much free time without needing to be somewhere or be doing something. Meditation is great because it can be done virtually anywhere. I love to do it right in bed, as I'm laying down. I listen to guided meditations on Youtube wearing headphones so that I cannot hear anything outside. The guided meditations are great for beginners who need to train their brains to relax. If you need a sleep aide, this definitely will help! Not everything on this list may help you. There might be some things that you try and develop to doing other things to help you. This is just a starting point. So don't get discouraged if this list doesn't help. There can be tons of other ways to focus on yourself while still valuing your role as a parent. YOU are just as important as your child. YOU are their lifeline; they want you to be just as well as they are. Don't run yourself over in your life so that your kids can have the perfect life when they truly want a happy life, with their happy parents. Taking care of yourself, mentally or physically, should have just as much importance. I may not have gone where I intended to go, but I think I have ended up where I needed to be. – Douglas Adams Although my start with special needs started long before Seamus was conceived, he seemed to be the start of my journey. He just took my entire world and flipped it on it's side. AT BIRTH! Like everything else he does, Seamus made his entrance into this world a grand one. Plenty of dramatics, and worry. What else was fitting for my little fighter? This little alien is really the first time I remember seeing Seamus. In the NICU after they had carted him away hours before without really any word or explanation. And all anyone could think was "What is this?" He was different, right off the bat. We knew he looked different, barely cried, had bent fingers, overlapping toes, legs are were always crossed and he never opened his eyes. Ever. Things snowballed from there making his condition seem more and more serious. One month later, we were allowed to take him home for the first time. On Both Fronts, the Instagram blog, starts after a few months of being home and needing some outlet to other parents like me, though I was convinced there weren't. One amazing woman reached out to me through some kind of hashtag that found one of my posts about Seamus and she comments an innocent comment "Oh, he looks so much like my son." Though I don't believe they truly resemble each other, I checked out her posts to find her son's diagnosis (children with genetic syndromes tend to resemble other children with the syndrome). Instantly after finding what little I could on the syndrome known as Ohdo I contacted the genetics team at the Children's Hospital with a name and strong belief that this is what my son has. They agreed with me. Before my next appointment, they said they'd be prepared and well read on the syndrome to know the best course of action for Seamus. Ohdo syndrome (SBBS) is rare genetic condition that results in the alternation of the KAT6B gene which blocks a protein from developing properly. It isn't the result of anything done during pregnancy, environment or ethnicity of the parents to cause the syndrome; nature decides. The syndrome affects both sexes easily, unlike autism, so girls are diagnosed just as much as boys are. Still, genetic counseling is recommended to parents to weight the chances of possibly conceiving another child with the disorder by a number of egg or sperm cells possibly being created with the gene alteration. Chances of conceiving another child with the syndrome are incredibly low. One of the main identifies of the disorder are the shortened fissures (eye openings) and hypothyroidism. Learning difficulties are also associated with the syndrome but are a wide range of disability depending on the child. Most of the other characteristics of the syndrome are variable, meaning that it doesn't have to happen. 50% of the children are deaf/blind or both. Seamus is neither! See? It all depends. That's how genetics goes. To Learn More, Click Buttons BelowSeamus continues to fight against the odds that SBBS stacked against him. We still must put braces on his feet at night, so that his foot might be straight when he walks. Every day at nap time, he wears hands splints to open up his clenched fists. We go to the doctor often to monitor his weight gain, his vision and hearing, his swallowing difficulties, and for his thyroid. Each week we have many therapy appointments to keep him strong and help his muscles build stamina. Early Intervention stops by every other week to watch his progress and make sure his meets are met by us. Needless to say, I'm a busy SAHM. At a year old, he sits up. He doesn't walk, or take steps, or even crawl. It probably won't even happen until he's four years old. His feedings are all done through a tube in his stomach. We've slowly started giving him baby food but progress is slow. Who knows how long is g-tube will be in there! But we still hold out hope for him. If anything marks kids with Ohdo it would be determination. They constantly learn skills, trying to become as independent as possible. All of them overcome odds stacked against them. Seamus has surpassed even the wildest dreams of his doctors which is saying something. So in the end, we got one of the best kids in the world. One who gives it his all, fights until the lights go out. Sometimes that's the ones you need to give you strength, because if he isn't giving up, then I'm sure not going to. Be sure to follow us on Instagram @onbothfronts |
AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
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