No parent ever expects to receive the news that their child has special needs. Don’t be bamboozled by the system. Learn how to advocate for your special needs child to not only increase awareness of children with special needs, but to ensure your child has the best help possible.
Face it, parenting is difficult. But we all want to do right by our kids. We all want to improve our parenting so our kids will turn into the best versions of themselves (and continue growing for the rest of their lives). This month I’ll show how taking care of ourselves helps us take better care of our kids. When we know our strengths and weaknesses, we can improve our interactions with others. I’d call that a win for everyone!
Today’s guest blogger holds a special place in my heart, as does her engaging and awesome autistic son. I spend the majority of each summer with them, and I can attest to the fierceness of her advocacy and the results of early intervention with support for someone diagnosed with autism. In between advocating for my grandson and writing for popular blogs such as Gardener’s Path and Mom.com, my daughter Laura hangs out with her husband and writes fiction.
Dropping the Bomb (aka What NOT to Do if You’re a Doctor)
We sat in the windowless exam room, my bored, anxious 3-year-old trying to escape my lap so he could bust out the door. I held tight to him as an old white pediatric neurologist told me everything he thought I should know about my son’s life with freshly diagnosed Autism.
“Autism is 80% genetic, so someone in your family probably passed it on to him,” he said. “I’ll write a prescription for genetic testing. Then you’ll know if he could pass the faulty gene on to his own children.”
“Um…okay.” My mind struggled to figure out the significance of such a test. Would it mean no children for him later on?
“Get him into Applied Behavior Analysis therapy as soon as possible,” the specialist continued. “ABA. I’ll write you a prescription.”
I’d never heard of it before. “ABA, okay, got it.”
“One last thing. Are you planning on having another child?”
My son flailed in my arms. “Uh…” I said, not wanting to launch into my saga of secondary infertility with this man.
“Think carefully before you have another child,” he said. “The likelihood that another child could also have Autism is very high.”
Everything from his solemn eyes to his regretful tone indicated that my son had just received some sort of death sentence. That to bring another child into the world with Autism would be a grave sin.
A Crucial Mindset Shift
I decided to be the best Autism mom advocate ever. Maybe I’d even get a tattoo of that Autism Speaks puzzle piece on my wrist to remind me never to give up on my son. Maybe I’d become an ABA therapist and give him this supposedly crucial therapy myself.
But for the next three days, I scoured the internet for advice, stumbling upon the most important perspective of all: Autistic adult perspectives on Autism.
Instead of viewing Autism as a disease to be eradicated, here’s what the Autistic Self Advocacy Network (ASAN), an organization run by Autistic adults, has to say about it:
“Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are.”Autistic Self-Advocacy Network
That’s when I had a massive mental shift. Instead of feeling sad about the diagnosis, I saw it as a neurodiversity to embrace and nurture.
I wouldn’t be putting my son through ABA, either. It’s a grueling program that requires 20-40 hours of weekly, in-home therapy for kids and aims to iron their Autistic traits into something “normal.”
I also threw the prescription for the genetic test into the garbage. My son deserves love and a family later on if he chooses those things, just like anyone else.
And rage uncoiled at the nerve the doctor had to suggest I shouldn’t have any more kids.
How dare he place so little value on the life of an Autistic person?
The Most Important Goal
His type of attitude makes me angry and scared for disabled and special needs people around the world.
My son deserves more. Your disabled or special needs child or family member deserves so much more.
I can’t speak for every person’s situation, but here’s my humble opinion: as parents, our goal should not be to advocate for our kids for the rest of their lives. Instead, we should seek to help our kids become their own self-advocates.As parents, our goal should not be to advocate for our kids for the rest of their lives. Instead, we should seek to help our kids become their own self-advocates. #specialneeds #advocate #parent Click To Tweet
The world doesn’t need more voices of “special needs parents.” It needs more disabled and special needs voices. More disabled and special needs people in positions of leadership in every field.
With that in mind, here are five hacks to help your child become their own self-advocate.
1. Make it About Acceptance, Not Awareness
There’s no point in being “aware” of a disability if people aren’t accepting of it. Too often, organizations promote awareness of Autism and other disabilities.
This often means that the focus is on finding a “cure” instead of on making room in our ableist world for disabled people to live full, purposeful, rewarding lives.
Don’t let the negative voices of doctors or specialists get in your head. Take what’s helpful for your child and leave the rest.
Just remember that your child is perfect just as they are. Like other children, they need your unconditional love, acceptance, and support as they learn and grow.
Their disability is part of their identity, and as such, it’s something for you to embrace as much as you embrace the color of their eyes.
And remember that it’s not this diverse part of their identity that disables them. It’s the ableist world around them that does that.
I love this quote from The Conversation:
“Many disabled people…say the disability is not inside of them: they are not a ‘person with a disability.’ Rather they are a ‘disabled person’ — someone who is disabled by a world that is not equipped to allow them to participate and flourish. But they are a person either way. Avoid objectifying people by referring to them as ‘the disabled.’ Our advice is to listen to how people talk about their disability themselves, and take your cue from them.”The Conversation
2. Don’t Hesitate to Stand Up for Your Child’s Human Rights
There’s a horrifying and disturbing idea in the world of special needs therapists and even educators that says that disabled children aren’t subject to the same human rights as non-disabled children.
Disabled kids are much more likely than their neurotypical classmates to be punished with seclusion and other punitive and violent actions, such as physical restraint.
By writing and signing an official “No Consent” letter for your child, you make it explicitly illegal for anyone to use harmful or secluding techniques. Here’s an example of a “No Consent” letter that you can modify and send to your child’s teacher and therapists for your child’s official file.
If you are okay with physical restraint in some instances, such as if your child is so upset that they’re at risk of causing injury to themselves or to another person, you can include that, too.
Is Physical Restraint OK?
But under the Individuals with Disabilities Education Act (IDEA), educators are required to consider the use of positive behavioral supports, such as nonviolent crisis intervention practices, and Functional Behavior Assessment (FBA) plans, before using safe physical intervention as a last resort.
Make sure you also discuss this letter, along with your expectations for the respectful and safe treatment of your child, at your child’s IEP meeting.
Even though I love my son’s private speech therapist, about a year ago I noticed that she was using some restraint techniques to try to get my son to focus. They were not violent at all, but my son hated being held in one place like that and could not speak up for himself.
So even though I felt awkward doing it, I asked her to stop using those restraints on him. She respectfully agreed to find other ways of helping him focus.
If a teacher or therapist fights back against your advocacy for your child, it’s time to reconsider whether that person should be in your child’s life.
Here’s why this matters for your child’s self-advocacy: Do you want them to grow up believing that they are worthy of being secluded, restrained, and dragged on the ground? Or do you want them to understand that they have the same basic human rights as everyone else in their classroom?
They take their cue from how you act.Do you want your child to understand they have the same basic human rights as everyone else in their classroom? If so, you need to learn to advocate. #specialneeds #autism #advocate Click To Tweet
3. Expect Great Things for Your Child
I once had a well-meaning friend suggest that there are many decent institutions for my son to live in when he grows up.
Horrifying as this is, this person spoke from their own painful and complicated experience with their child. I don’t resent them for holding these terribly low expectations.
But the very last thing I expect for my son is that he will grow up and live in an assisted-living group home, secluded from the rest of the world.
While he’s currently enrolled in special education preschool, next year he’ll join disabled and neurotypical children alike in his kindergarten classroom. Thanks to his Individualized Education Program, or IEP, he’ll receive the supports and accommodations he needs in order to thrive.
Your child’s IEP is a tool to help your child learn and succeed along with their friends and peers, with all the help they need. (For more ideas on how to be an equal participant in creating the IEP, check out this article).
Even in college, your child can receive support in order to help them reach their potential.
Your Child will Become an Advocate for Himself
But in college, they have to know how to self-advocate in order to get that support.
Which is yet another reason why helping your child become a self-advocate is your most important advocacy goal! (Making sure your child’s college has a disability support office is a step in the right direction.)
For more on helping your child transition from high school to college, see this article .
Disabled children can graduate high school, go to college or trade school, become productive members of society, and start families if they choose to.
That’s what we expect of neurotypical children, and it’s what we should expect of our disabled children too.
By holding this expectation ourselves, our children will expect it of themselves. This will serve them well in their journey to self-advocacy.
4. Join the Fight for Inclusivity
Disabled people bring unique capabilities and strengths to the world, and we need to support inclusion and equity from the preschool classroom to the general workforce and beyond.
I wish my son’s public preschool program was inclusive — meaning that both disabled and non-disabled children learn together instead of in separate classrooms with separate teachers — as it is in some states, but I’m grateful that kindergarten will be inclusive.
Inclusion sends the important message that disabled children belong in all the spaces that typical children do. It encourages friendships and understanding between disabled and typical children, which sets the stage for the same collaboration all the way into the “real world.”
I dream of a world where we view Autistic adults teaching school while wearing headphones as something normal. Or where adults with limb differences and wheelchairs work as physicians and it’s normal.
The thing is, the world is currently still very ableist, inaccessible to people with disabilities, and segregated, especially once a child leaves public education.
And even in public education, teachers and other students and parents can hold negative beliefs about your child.
As your child heads into their inclusive classroom, create a Back-to-School Parent-to-Parent Guide modeled after this one (from Courtney at Inclusion Evolution. As she suggests, have your child hand this guide to their teacher at the beginning of each school year. Give a copy to other parents whenever you feel comfortable doing so.
I’ll be doing this with my son next year when he heads into kindergarten until he has the skills to advocate for himself, both in the classroom and beyond.
By fighting for his inclusion in the wider world, I hope I’ll give him the skills to fight for inclusion for himself and for his disabled friends as he grows older.
5. Remember That Your Child’s Needs Are Not Special
Here’s the thing: all children, whether disabled or not, have the same needs. They need to be unconditionally loved and accepted. They need to be challenged and encouraged. They need to learn in a safe and supportive space. They need social interaction and friendships.
It’s not the needs of disabled children that differ from typical children. It’s the support. The accommodations.
One of your most important tasks in life is to help your child understand that in order to meet the needs they have, they have the right to demand services and supports to meet those needs.
Show them that you’re on their side, always, and that you’ll fight for policies that make sure their needs and those of other disabled kids are met.
6. Always Keep Learning
Seasoned parents of disabled children can probably tell that I’m a newbie. I have so much to learn, and even writing this article sent me off on a whole new direction of research and learning about IEPs so that I’m ready for my son’s upcoming meeting.
So, I’ll never stop learning, and you shouldn’t either. Read articles and blog posts by disabled people and parent advocates alike. Carefully analyze the sources to make sure the information you’re getting is respectful and helpful to your child.
This guide to finding Autism information that’ll actually help your kid and you is a favorite of mine.
Here are a few more of my favorite resources:
Empowering Leadership: A Systems Change Guide for Autistic College Students and Those with Other Disabilities ()
Accessing Home and Community-Based Services: A Guide for Self Advocates (https://autisticadvocacy.org/book/accessing-hcbs/)
I can’t express how much my thinking has changed, and continues to change, for the better as I learn more.
I wish I could go back to that pediatric neurologist and give him a piece of my mind. Maybe one day, my grown son will go back and do that for himself.