Posts Tagged ‘advocacy’
Changing the View of Autism
My daughter, Alyssa has autism. She has severe non verbal autism. This means her autism comes with all the bells and whistles. She has severe anxiety, apraxia, limited diet, OCD like behaviors, weak receptive language, difficulty communicating, regulating emotions, and a hard time deviating from her routine or what is expected. She is autistic. It is not who she is. It is not all she is. It is however a part of her. A huge part. It is like the colors of the rainbow, it encompasses her. It is everywhere…
Read MoreDisability Advocacy: Embracing Inclusion
When you don’t have a child with a disability you don’t think too much about it. Until your life is touched by it, then you think about it differently. It’s personal. Of course, everyone knows there are individuals with disabilities, but it’s not directly affecting your life. You may think there is not much you can do anyway. That is where you are wrong. We need to stand and advocate for everyone, especially those who are vulnerable. We have come a long way in the way we treat and think…
Read MoreThe Brick Wall of Autism Advocacy
What does it truly mean to fill your life with advocacy? As parents of autistic children, we spend hours upon hours advocating for our children. I often think of it as two sides of a brick wall. On one side, you have all the people you sit across from in different settings. On the other side, you are standing holding the hand of your child. In this brick wall, one brick is missing. Through the hole, you try to use your words to explain a mountain of concepts you wish…
Read MoreFive Things Every Parent of Kids with Special Needs Should Hear
Are you walking into a new world of special needs parenting for the first time? Are you a few years in and finding things hard to manage right now? Or are you the parent who has walked this path and is now looking ahead at what services are there for your child’s future? Here are some gems of advice that I have received from others who have walked this path alongside me, before me, and some of my own. Advocacy Can Come in Many Forms If you are the loud…
Read MoreFifteen Years of Autism Awareness
I approached this last Autism Awareness Month differently than I have in the past. Somehow, it’s not mine anymore…It’s hers. Don’t get me wrong, I will continue to fight for my daughter, Lizzie, every day, and I will openly share about our lives to help others understand the dire unmet needs of our community. But, experiencing autism for over fifteen years has allowed my emotions to stabilize and a different perspective to set in. This is how my Autism Awareness Day has changed over the years: It has only been…
Read MoreFor Those Who Came Before Us, Thank You
If you have the honor of meeting a parent of an adult child with a disability, I want you to say thank you. I want you to shake their hand. Because these people, these parents, paved the way for parents like you and me. And for our children. They probably won’t brag though. They also won’t argue with you online about trivial things either. Because they’ve seen it all…and they know what’s worth fighting over. These are the parents who upon finding out that their baby was differently abled, were…
Read MoreThe Right and Wrong Reasons to Advocate
I have a message to send loud and clear. A true, honest advocate fights for the child, adolescent or adult whom they are representing. They will position themselves to partner with all parties involved – the parents and/or other caregivers, school personnel, aides, the therapists, the case managers – and will not set out to make enemies of any of the aforementioned parties or convince caregivers that this is an ideal strategy. Sending a message that insinuates that the majority of teachers and therapists are out to make someone’s life…
Read MoreRaising a Future Advocate
Dear fellow momma at my sons therapy center, Today, you may have heard my oldest ask, “who’s that yelling?” I thought we covered autism, but I was so focused on explaining her brother’s autism, I forgot to go into detail about the whole spectrum. I took this as a teaching moment, but you weren’t in the car with us. There’s no way you would know this. My daughter is the sweetest, most compassionate kid I know. She’s also naturally very curious. Her question stemmed from curiosity. But we talked about…
Read MoreThe Box of Kleenex on the Table
On the 24th of August, my husband and I sat hand in hand to finish a year long diagnostic journey to understand why our son Romeo lives in such silence. I could feel Gerardo’s fingers stroke my knuckles as the words spilled from the specialists mouth. As they sat and explained therapies, research, support groups…my mind wandered to the Kleenex box on the table. My child wasn’t sick, his life wasn’t in danger and the world didn’t stop turning. Romeo didn’t stop being Romeo. We just had a name for…
Read MoreIt’s More than Awareness
When I reflect about this month; April – Autism Awareness Month, what is it that I want most? I want ACCEPTANCE, ADVOCACY and ACTION! I want others to not just be aware of autism but to actually accept, make a difference, and make an impact in a life of some living with autism. When we talk about awareness, its a good start but it’s not something we should be satisfied with. It’s not until people understand, accept, and take action that we should say that progress has been made. So,…
Read More