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When my second child, Josh, was diagnosed with Down Syndrome, there was no way for me to fathom the journey my husband Michael and I would experience in the world of services for special needs kids. The news shook my entire world. Doctors gave us a long list of the limitations he would have and things they said he would never be able to do. It felt unjust and I was overwhelmed and scared.
I had a choice to make, and that was not to view him through the lens of his diagnosis, but to see Josh as the potential he could become. From that perspective, I began to see all of his gifts and the things that make him so incredibly special. Josh shares kindness and compassion without restraint. His capacity for love and empathy is incomparable. Therefore, nothing makes him happier than being helpful. Josh also knows how to ask for what he wants, an advantage in a big family like ours! (Josh is one of four siblings.) Interestingly, what comes easier to others, Josh has to work extra hard to achieve. And, what comes naturally to Josh, like kindness, nonjudgement, and compassion, are where most of us need to work harder.
All of this information became my superpower as he got older, and we began our quest for the best education and services we could provide for him. We searched for a school that would meet his special needs, but in a mainstream environment. I could never have anticipated how difficult this would be. Providing services that help children with their limitations and challenges shouldn’t be more challenging. Yet, I was repeatedly met with educators and experts who defined Josh by what he couldn’t do, rather than what he could do.
As a parent, this is so disheartening and infuriating. I could have been reactive and return the negativity. But, that wouldn’t have benefited either of us. Instead, I chose kindness. And an amazing thing began to happen—people reconsidered him for services he initially didn’t qualify for; new opportunities presented themselves, exceptions were made, and doors began to open up for us. To be clear, I never expected anyone to rewrite the rules of special education for us. All we wanted was to be met with the same open mind and respect for Josh’s potential that we had.
If you are a parent of a special needs child, I’d like to stop here for a moment and say, you’ve got this. Sharing kindness when others are pessimistic about your child is difficult. This experience may be the greatest opportunity for transformation you ever have.
Josh has become the greatest teacher in my life. Here are a few strategies I found helpful while advocating for my son.
You have an open invitation to remain open. Reactivity and impulsivity won’t serve you. Take the time to sit with what initially feels like antagonism or hostility. When it comes to the needs of our children, emotions tend to escalate quickly. Nothing will derail a meeting faster! Try not to get caught up in anxiety, worry, or desperation. Instead, try being inquisitive.
Ask a lot of questions and listen carefully to the answers. Try beginning your sentences with, “I wonder…” It’s a non-threatening way to move the discussion in a different direction or encourage others to entertain a possibility they hadn’t considered. Here are a few examples:
I wonder if there are tools we can make available to him to use when he gets frustrated…
I wonder if she could have extra time to complete projects…
I wonder if she might feel more supported if we can give her a few alternatives…
Your instincts are valid. Doctors, therapists, and other professionals indeed have years of training and education behind them and they can offer great perspective. While you can learn something from their experience, you do not need to accept their judgments as facts. As a parent, you are the expert on your child. It is absolutely possible to respect their expertise while inviting them to see your point of view as well.
Remember, when professionals speak briskly about your child, seem like they’re in a hurry, or approach problem-solving with negativity, it’s a manifestation of their own challenges. It has very little to do with you, or your child. Perhaps, they want to do more for you but are coming up against a bit of bureaucracy. You never know what battles others are fighting. Whatever conflict you perceive is about them.
I still wonder, “Who will Josh become? What will life be like for him?” But I don’t let it blind me from seeing his potential. In truth, I ask myself these questions regarding my other children as well. After all, we are human beings having a human experience. Who will any of us become? Always changing, hopefully, in the ways we desire. Josh is a blessing and a gift. As soon as I saw this all those years ago, my reality followed that idea. I may spend the rest of my life, kindly encouraging others to see things the way we do. One way or another, Josh will live a fulfilling life, achieving his desires and creating more love and kindness in the world. That much I’m certain of.
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