FTF "Support Groups 101" by Carrie Fannin

Here is July's First Things First article, which was written by Carrie Fannin who is the mom to a beautiful teenage girl with multiple acronyms, as well as the WA State Parent Connections Host for the SPD Founation for the past 10 years, and founder of Sensory Planet, a social network dedicated to those caring for children with Sensory Processing Disorder.

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Interviews, Guest Posts & FTF" tab at the top -- with the obvious title of "First Things First Articles".


Stanley Greenspan, the author of "The Challenging Child" (1995) had an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input. He describes it this way:
"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."
It’s no wonder that children with sensory processing disorders feel out of control, exhibit a whole host of behaviors and have difficulty concentrating and focusing at school. But now, also imagine being a parent or caregiver of one of these children.

After a decade of involvement with support group networks I’ve found that there are a number of emotions that may run through these parent’s minds. It’s not uncommon to hear how exhausted, frustrated, rejected, lost, incompetent or alone they feel while trying to raise (and understand) their child. There is also the inevitable fallout from even having those thoughts; we end up carrying around a big dose of “Mommy or Daddy-guilt” as well.

What can you do?

Find a support group, whether it's online or in your local community, and join it. Commit to surrounding yourself with parents who understand what you are going through.

Why should you join a group? Not sure you are ready (or even “need”) to ask for support? Are you wondering what you might encounter the first time you meet a group of parents who are raising children with SPD?

Consider this: We know from research that there are two critical components of family and personal resilience. They are a) that families reach out for support (isolation is the single most limiting factor); and b) that they take time to nurture themselves (source: James May, M.A., M.Ed.) If it helps you prioritize this task, categorize the time and effort you spend finding support that meets your needs as your “Personal Oxygen Mask” (you know that you’ve got to put it on before you can assist others). You are not alone on this journey – reach out and make a connection.

Look for resources that offer you meaningful information:

• Does the group have a wide range of children's ages covered? This is nice because there is always someone (or several someone’s) experiencing something for the first time and also several parents who have older children that have been there/done that and can offer encouragement, ideas, etc.

• Is it a supportive, positive environment?

• Is the format one of collaboration and exchange of information, or is the focus education? (i.e.: are you there to “talk”, or “listen”?)

If you try one group and it doesn’t feel like a good fit, try another – every group has their own platform, mission and personality.

Keep in mind that today there are probably more online options available than local meetings/groups. Message boards, like Yahoo Groups, are a good place to start and, most recently, social networks have grown in popularity. It isn’t hard to find online support groups – but finding a good one can be a challenge (Sensory Planet, Facebook, Ning and Big Tent are good options to check out).

Can’t find a local group that meets your needs? Consider starting one yourself. If you are interested in being a host, there are two networks currently recruiting parents to join their groups:

The SPD Foundation (http://spdfoundation.net/families.html)
The SPD Foundation is a world leader in research, education, and advocacy for Sensory Processing Disorder, a neurological condition that disrupts the daily lives of an estimated 1 in 20 children and adults. Originally called the KID Foundation, SPDF has been providing hope and help to individuals and families living with SPD since 1979.

SPD Parent S.H.A.R.E., (http://www.spdparentshare.com/)
SPD Parent S.H.A.R.E. is an International network of volunteer Support Hosts formed in 2005 in order to share information, resources, awareness and support to SPD families.

Too often we under estimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. [Leo Buscaglia]

I hope we have an opportunity to get to know one another. Don't delay.. Get connected today!

Carrie Fannin, Owner, Sensory Planet, One Puzzle, Many Pieces©

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Just another Mom said...

I loved reading this post. The single biggest thing that saved my life and changed it all at the same time was finding an online support group started by Carrie. We were still in the diagnosis phase and my sons school had asked if they could test him for sensory sensitivities. That is when I began my search for any and all info on SPD and found Carrie's group on facebook. I felt like I had hit the jackpot of information and educational materials. She, and the members of her group, provided an unending supply of education and support that I dare say I could not live with out. You see I was suffering with severe depression and carrying the weight of dealing with all my sons medical, educational, and emotional issues on my own. I needed the support group like I needed air. I remember saying to Carrie in an email, 2 years ago, that I hope that one day I can be in a position to help support other parents like she was. I am happy to say that the day did finally come! I think Carrie made an excellent point in looking for a group that has a wide range in ages. I have found that those parents that have "been there-done that" can be some of your biggest inspirations, supporters, and encourager's. Thanks Hartley for posting this and Thank You Carrie for highlighting just how important finding the right support group is in taking care of yourself!

Gavin Bollard said...

Well done Carrie (and thanks again Hartley for this wonderful series).

Being at school, scouts and other kiddie functions where you see your own children's painful interactions with other children - and where you hear other parents talk about their "perfect children" can be a daunting experience.

You can go home feeling really, really depressed.

The great thing about these groups is that they're full of people with similar experiences and most importantly, they're "always on".

Since it's common to think about your problems in the early hours of the morning when you can't sleep, it's nice to know that even though all the support in your own country is asleep, you can still connect with a stranger on the other side of the world who knows exactly how you feel.

There's no underestimating the importance of support groups.