Sometimes life doesn’t go to plan, but that’s OK, we take a moment and we breathe, we trust, and we move forward into the unknown. There are times we have to let go of life as we knew it, or as we expected it to be. We must release control and surrender to the universe. We can weep, we can scratch and we can scream, but the universe will take us anyway and we have to let go, we have to trust blindly, we must take a leap of faith . . .
When we open our eyes there is a rainbow of colours, a vision of such unexpected and breathtaking beauty. Life as we new it has changed forever and now it is time to find the beauty in this new world, to discover love and joy like you never knew existed. It is time to embrace this new spectrum of light and colour.
This is exactly what Teresa, my guest blogger has done. Her story is one of strength and hardship, but it is also a story of light and hope. She is truly an ‘Inspirational woman’. I was blown away when I first found Teresa’s blog, and I knew I had to invite her to write a piece for my lovely, loyal readers. Please share this story after you read it. Grab yourself a cuppa or a coffee, curl up on your couch and settle in to read this amazing, inspiring woman’s story.
Who am I? Simply put, I am a wife, the mother of two beautiful boys, and a special education teacher. My life is uniquely tied to autism and children with disabilities since my oldest son has autism and I also happen to work with children with all sorts of disabilities, including autism. I’m hoping that what I write here will provide support, encouragement, and awareness of autism and those who have individuals in their families diagnosed with autism. From my perspective, a child’s diagnosis of autism does not necessitate devastating thoughts, nor does it negate a child’s potential. We are, first and foremost, a family. We experience ups and downs like any other family. No matter what happens, though, we never lose sight of love and hope in our journey through this life.
When my son was born, he weighed 7 pounds 6 ounces, had brown hair, brown eyes, and looked like the most beautiful thing I’d ever seen in my life. Aside from the severe jaundice that required us to use a billi-blanket for a couple weeks, nothing out of the ordinary stood out about him, at least I didn’t think so. I felt blessed because my baby slept through the night after only a couple weeks, hardly ever cried, and didn’t really need me to hold him a lot. All these people around me had babies that fussed all the time, and mine let me do all kinds of things around the house. If I’m honest, I almost felt guilty that he hardly needed me to hold him and I did whatever I wanted, but he was an easy baby.
As he got older, he still maintained this easy-going nature. He did what we asked. If we said “no,” he listened. He obeyed very simple commands. Nothing about him was difficult until around 18 months old, when started acting up at daycare. Suddenly, we got reports about him hitting other kids. Then he began hitting at home and he stopped listening. Our easygoing child stopped listening? What happened? I called the paediatrician and asked for some advice, and got referred to the local developmental services agency. That began our whole journey of discovery, because that’s when I found out that he had delays in pretty much every area. I never knew he had cognitive delays, motor delays, or any of that. We moved in the middle of all of this and later discovered that he also had severe speech delays. No one would acknowledge the behaviour problems as anything beyond a reaction to his delays,
though, and I went with that “diagnosis” to his issues. I could see how frustration might cause him to act out.
As his speech got better and he still acted out, I had had enough. A colleague suggested his behaviours looked like those of a child with autism, and it clicked. As a teacher, I should have seen it, but I never did. I grabbed on to it, and never let go. It took over a year to get in once we got the referral to TEACCH, a local agency that diagnosis and provides services for people with autism in North Carolina, but we got in and they agreed that he had autism. Unfortunately, a diagnosis just confirms what we already know. It doesn’t fix anything.
Here’s what I want people to know:
As a parent of a child with Autism, I know some days we struggle. Lord knows, some days we struggle. All parents go through days like this, but our days might include things like full on body-slamming meltdowns, poop smeared on the walls, chasing a full-grown child in a busy parking lot, slaps in the face, and judgement from people who just don’t get it. But you know what? This too shall pass.
Will there ever be a cure? In my opinion? No. No, there’s not a cure. I think we can make our children as comfortable as possible in a world they’re not comfortable in. I’ve gone on a journey of discovery with my child. We’re doing a corn-free diet right now. We tried doing a corn-free, gluten-free diet, but found it was too restrictive, so we do gluten-free some nights, but always corn-free, but corn-free works really well for him. When he eats things with corn in eat (specifically corn syrup), things go haywire. We also give him probiotics to help his belly feel better and we’ve decreased the number of medications he was on. Between us and his school, we’ve come up with a sensory diet that works well for him as well, and between all of that, he’s doing much better. We can make our children comfortable in this world that makes them feel off-balance, but I don’t think we can find a cure.
Do I regret having him? Not for anything in this entire world.
In fact, I recently wrote this post
(http://www.embracingthespectrum.com/the-4-surprising-ways-my-son-has-made-me-a-better-person/) about how he’s made me a better person. I cannot imagine my life without him in it.
I work with children with disabilities and I think they are the most wonderful people in the whole world. I love them with my whole heart. My son fills my heart up with gladness in that same way but more because he’s mine and I know what impact he’ll have on the world. I know he’s meant to accomplish great things and what progress he’s made, just as I know my other son will accomplish great things with his life.
Do I think he’ll ever work? I think he’ll do anything he sets his mind to. That’s completely up to him. The things I’ve seen my son accomplish just since preschool amaze me. He’s like a superstar. He’s gone from no one understanding him to narrating a short speech. He got to take a part as Alexander Graham Bell in his school’s “Wax Museum” and he knocked it out of the park. He memorized his speech and recited it when people pressed his button. A year ago, I’m not sure he would have done that. In a year, he will do more. So, ten years from now, will he go to college? That’s up to him. I believe he can do what he puts his mind to.
My advice? Never stop believing in your child.
Enough people in this world will put him or her down. Your child needs a positive voice to say, “You can do this!” If you want your child to achieve more, you must believe it can happen. Think about who you want your child to be.
About “Fixing” Behaviours:
It’s been a long time since the days where I wanted answers and a “fix” to my child’s behaviors. As my husband and I have grown as parents, we’ve realized that the answers really don’t exist. That sounds really negative, but if you’re looking for a set of rules for how to fix autism, you need to fix your mindset.
Autism isn’t a disease, it’s a disorder. And your child? Your child is a person. We all react to things differently. Just like a person with depression (also a disorder) doesn’t always handle their depression in the same way another person with depression handles it, a person with autism doesn’t always handle it the same way as another person does. They’re individuals and we must treat them as such. They grow and change and sometimes what works doesn’t work as they get older because they’ve changed. We learn to accept that because they’re individuals and deserve to be treated humanely.
Things go much more smoothly in our home now that we’ve really we must deal with the ebbs and tides of change, now that we’ve changed his diet, and now that we’ve reduced medications. Consider changing from fixing a problem to working with your child or family member to make things better. Figure out what’s triggering a behavior and work to reduce the trigger instead.
Finally, watch your words.
Even a nonverbal child can hear. They know what you’re saying and feeling, even if you think they cannot process it. Imagine yourself in your child’s shoes and listening in on your conversation. Do you want to hear what you’re saying? Is it positive? Nurturing? Supportive? Would it break your heart? Think about it. They can hear you! I’m reading a book called Ghost Boy by Martin Pistorius that might enlighten you. In this book, the author, who found his voice through augmentative alternative communication devices, talks about how people thought he was just a shell of a person with an IQ of 30 and they just talked freely around him. He heard horrific things said about him—right in front of him! Just keep in mind that your child can hear and may even understand every single word, even if
they cannot utter a single word back. What if your child’s intelligence hasn’t yet been discovered? That often happens with autism because of the communication delays. Never doubt what your child might understand and always respect your child enough to speak kindly about him/her, especially if he/she is right in front of you. Remember, you want to believe in your child.
Mostly, just LOVE your child.
Love your child with all you’ve got. Even if your child doesn’t like hugs and kisses (thankfully mine does), if you love, your child will feel it. The Beatles said in their popular song from the ‘60s “All You Need is Love,” and maybe that’s not all you need, but it goes a long way. If everything you do truly comes from a place of gentle, caring love, the rest will fall into place. Love your child like you would any other child, and do what you’ve got to do.
Please show Teresa your inner light and support her by leaving a comment below.
This post was written exclusively for Reflections From Me by Teresa, a blogger, a wife and a mother to two fantastic boys. Her life is dedicated to her family and to her work with children who have disabilities. Her blog covers her day to day highs and struggles as a mum, and through her writing she hopes to educate, support, inspire and raise awareness for autism.
To follow Teresa’s Journey visit her website Embracing The Spectrum. You will also find links below to follow her on Twitter or Facebook.
Thanks for joining Teresa and Mackenzie xx
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