the fool proof guide to loving our special needs family.

Thank you Beth for sharing this great post with the GiGi’s Playhouse community! Judah and his family can be found enjoy the programs and friendships at GiGi’s Playhouse Syracuse.

You don’t have to look too far into the world of special needs to find it chock full of inspirational stories. It’s bursting at the seams with determination and it’s spilling over with promise, pride and people prevailing. This is why I will not speak of my son Judah’s struggles. I will not dive into the pools of possible limitations. I will not elaborate on hardships or strife. Instead I will focus on us as a family, what we need from you, what will ultimately aid in Judah’s success and maybe even send him into a world so inclusive that we don’t even know what it looks like yet.

1. We are not special. We are not heroes, or brave or extraordinary. We are just a family who loves each other. We will fiercely protect our child, as I know any of you would.

2. You can ask us about Down syndrome. We certainly do not know all that is Down syndrome. but we are learning fast… and, as I tell my students, “if I don’t know I’ll find out for you.” We are not frightened, embarrassed or offended if you ask. In fact, we prefer it.

3. We are different but we are the same. We are, as my new favorite saying states, “more alike than different.” We still like a beer on the front porch. Our world does not spin on an axis revolving around Down syndrome. It is a part of who we are now and we don’t mind talking about it, but we also still like: flip cups, family, friends, fun.

4. You can treat our son just like any other baby. He doesn’t need extra coddling or comforting just because he has an extra chromosome. We still put him in time out, take him everywhere we go and let himself soothe to sleep.

5. Please ask us to hold our son… or if that’s not your style, ask to look at him. He will not break, and let’s face it, sometimes his parents need one.

6. You don’t have to pity us. We are fine. We are better than fine; we are enlightened, enchanted even.

7. Thank you when you say you’re proud of us, but really, we should all be proud of each other for raising children. It is a fruitful yet formidable job. We all deserve a hell of a lot of praise for just keeping these munchkins alive — not to mention being the reason they flourish.

8. Help support us supporting our son. Misconceptions and misunderstandings swirl around our society. You know someone who has a baby with Down syndrome. You have witnessed the testament to what Down syndrome is not. You have the power to destroy the negativity if you come across it. The fact that you are reading this tells me you are my son’s advocate, and I love you for it.

9. Just keep doing what you’re doing. I get real sappy when I start talking about how sensational everyone has been. It exceeds everything I think I ever could dream up… assuming you could dream up a situation such as this. Tears show up every single time. So thank you. Thank you for loving our son and us. Thank you for giving us time to process.  Thank you for not deserting us when we were new to the racket and things were messy. Thank you for being our family, our friends, our rocks. I know it sounds cliché. It may even seem unfathomable, but Down syndrome is the best thing that could’ve ever happened to our hearts, our faith and our perceptions. We truly are #downsyndromeblessed.

 

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