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The Importance of Understanding

Amanda Downey, Mom to Finleigh (11)

 

 

I am mom to 11-year-old “FinleighMaeDowney”, said very quickly in succession when meeting someone new. The new person looks up at me, and I, with a knowing smile, say “This is Finleigh.” Finleigh smiles demurely as she shyly susses out this new person. I hold my breath hoping that this encounter doesn’t end in tears or running away or falling to the ground, leaving me to apologize and promise that it’s not them. Really.
Often she charms the new acquaintance, but one wrong word or look and we could be dealing with the fallout for hours. Finleigh apologizing and crying alternatively as she laments how she lost her cool. She really didn’t want to, but she couldn’t help it. Life with Smith-Magenis Syndrome, it’s hard for me. It’s even harder for her.
I’ve been parenting now for fifteen years, eleven of those with an SMS child. I’m tired. I’m deep down in my bones tired, no matter how many times I get to sleep-in or go to bed early. The exhaustion follows me like a cloud over my head, sometimes it lets a little light shine in, but mostly I could happily crawl into bed at any moment and fall asleep (if my racing brain would let me). Because it’s not just physical, it’s mental and emotional.

I’m tired of the professionals that come in and out of our lives – all with the best of intentions. Professionals who have experience and know what they’re doing. Who speak to you with their thinly veiled judgement on how you’re doing it all wrong. And then two years later, they finally get it. They’re on your page and they realize just how much thought you’ve put into every decision you’ve made in terms of your child. They finally accept your child for who they are and begin to work effectively with them. And then they leave. New job, new post. And… we start all over again.

I mostly smile and nod these days when we’re meeting with a new professional. I speak out when it’s best for my child, but mostly they have to learn from experience. There’s even a book to help them (On the Road to Success with SMS – A Smith-Magenis Guidebook for Schools by Barbara Finucane and Barbara Haas-Givler). If they take the time to read it, it helps, but it seems that it’s so very opposite from what they know, so it’s difficult for them to take these strategies on board. For me it’s second nature, but I learned by trial and error. Baptism by fire, as it were.

I have experienced isolation from friends with more typical lives over the years. Old friends whom I still love, but just don’t have much in common with anymore. The SMS life takes those things that we had in common and makes them feel unimportant or irrelevant. We keep up with each other on Facebook, but we don’t get together anymore. It’s too much for me. It’s too much for them. I have a few friends who have managed to stay, but most of my friends now are moms (and dads) that have children with SMS. We are a special club. We don’t have to explain ourselves to each other. We can share our feelings without judgement because we know there’s a good chance they feel the same way.

Now let us remember that SMS does not happen in a vacuum and even though SMS can completely take over our lives, it is not the only thing that defines us. Our politics, our spiritual beliefs, our life experiences, the place in which we live, the age of our child… all these things can impact how easily (or not) we mesh with people. I’ve watched relationships go wrong online – struggling SMS parents leave groups because they have had a difficult interaction. And let’s be honest, we’re all dealing with so much that we don’t have to add difficult interactions with those who in theory should understand us.

But, having said that, finding those that you do mesh with it so very important. It was for me. I got to know a lot of SMS parents around the world and after a few years of surface interactions, I have found my people. I embrace our larger SMS family and join in on conversations when I find I have something to say, but I also have my close few that I know intimately. Who I trust with everything. That know my successes and my failures. That understand. People I don’t have to explain things to because they just know. And I can cry and complain without having to preface it with how much I love my daughter. My daughter is my world. I adore her with all my being. I would do anything for her, but raising her is not easy, not even a little bit. It’s a challenge for me to hold myself together everyday despite the many and varied supports I have. Despite how lucky I’ve been in so many areas.
What would I do if I didn’t have people that understood my life and were there for me when I doubted myself? People who can simply send me a virtual hug when I’m sitting in my house in tears and make me feel better and loved. I’m not sure, but I’m awfully glad that I don’t have to find out.

So find your people. It may take some time, but find those one or two or twelve other parents out there that help you in whatever way you need in this parenting journey that none of us asked for, but when push comes to shove, we wouldn’t have any other way. Because these children, these glorious, loveable, explosive children have our hearts. And their souls shine a light that few others can.


Don’t Know Where to Start? Here Are Some Ideas:

  • Blogs: When we first received our diagnosis, I scoured the web for blogs by other SMS parents. It helped me feel less alone
  • Social Media: If you enjoy that kind of thing, some hashtags that are regularly used are #hugorbehugged #prisms #sms #smithmagenissyndrome . You can join PRISMS online at https://www.facebook.com/SmithMagenisSyndromePRISMS/ and via their private Facebook group at https://www.facebook.com/groups/149357361742618/  
  • PRISMS 10th International Conference: Going to the conference can be unattainable for many families due to finances or other consideration. PRISMS offers scholarships for families to attend the conference. If you find an opportunity to go, it is a terrific place to feel part of the community and find like minded parents.
  • PRISMS Regional Representatives: Contact the regional rep in your area. They will have a list of SMS families in your area and can help to connect you with others.
  • Health Professionals: Sometimes health professionals know of others with SMS and are able to facilitate connection. Ask them if they would be willing to reach out to see if another family would be willing to meet.

 

A Note from PRISMS: If you are a parent or caregiver to someone with Smith-Magenis Syndrome and are looking for ways to connect, engage, or find another family to speak with, please contact us at info@prisms.org . PRISMS is a community that cares; we care about you.