Interview with Carrie Fannin, SPD Advocate/Mom

Hello Everyone!

I am kicking off my interview series today, with the hope of having an interview each Monday for all of you to enjoy. The goal would be to increase awareness and even more importantly, let you readers know just how many families just like YOURS are out there!

Please feel free to leave comments below! Oh, and the picture is Hayley *before* she was a teenager. LOL

Here is the interview with Carrie Fannin, Mom, SPD Support Group Host, and all around Rock Star SPD Advocate!

Hartley: Hi Carrie! Thank you so much for agreeing to this blog interview. I know you are busy out there saving our SPD kiddos one by one, so it means a great deal to me, and my readers, that you have taken the time to talk with us. Welcome!

Carrie: Thanks Hartley. Glad to be here. Rock Star Advocate? I forgot my Leather Pants ;-)

Hartley: I just can't believe you own leather pants. LOL Many of us here in WA (and now nationally) have heard your name, as soon as we started our quest for support. Can you tell us about how your journey began? Who were you before the WA SPD Support Group was formed?

Carrie: A working Mom. I worked for a community bank in Bellevue, WA as a Sales Support Manager for an Income Property Department.

Hartley: You talk to moms with newly diagnosed kids all the time, what do you remember from your first *days* realizing you were officially the mom to a “special needs” child?

Carrie: Oh, a jumble of emotions. I remember that I felt very alone. Scared. I couldn’t pronounce the disorder my child had been diagnosed with, let alone explain it to anyone who asked about it. Worried about my daughter’s future. A lot of things. There were a whole lot of tears and a lot of sleepless nights in those early days.

Hartley: How did the WA SPD Support Group come to be? How long have you been leading this crusade?

Carrie: Hayley’s OT gave me the URL to an online support group and one night (very late) I finally found some parents who understood what I was going through. What a relief! I felt so much camaraderie with these women (none of whom lived anywhere near this side of the Mason Dixon line) that within a month I had volunteered to host support group meetings in Washington. That was back in the fall of 2000.

Hartley: Talk a little about how much that support group has “morphed”—you are online in virtually all 50 states, and have a Facebook site (with over 800 "friends") dedicated to connecting the country! How has this happened?

Carrie: Well, the state listservs were another 3am idea of mine. A little over three years ago, we opened a Yahoo listserv for our Washington support group members as a way to keep our families connected to one another in between our meetings. Our group was growing, and I was finding it difficult to keep up with all of the individual email I was getting and answering. I also thought that the entire group could benefit from the “answers” I was giving to the email questions, so I slowly shifted from individual email to a listserv. This worked so well for our parents in Washington, that I got to thinking that there should be a similar resource in every state in the U.S. So I did it .. it was a bit more work than I envisioned at 3 in the morning :)

Hartley: What do you say to those moms out there that want to do more to advocate in their own state? What could they do *today* to start finding and connecting with other families?

Carrie: Start by joining the listserv in their state and connecting with families who are already there and looking for support. Consider hosting support group meetings in their community (I’ll help get you started if you want to know how).

Hartley: Many of my readers (friends), me included, see you as a “Super Mom”. We often forget that you are still parenting a SPD kiddo of your own—although I seriously doubt that Hayley would be keen on the term “kiddo” as a teenager. How are *you* as a special needs mom—to a teenager no less!—these days?

Carrie: No different than anybody else who is raising a child with special needs. We all do the best we can every day, right? Most days I’m exhausted, some days I lose my temper with my child, and every day I hope to do better than I did yesterday. I mean, seriously, I think that every single parent who does their best, advocates for their child, and loves them every day is a hero, don’t you? This is the hardest thing I’ve ever done in my life, but I wouldn’t trade it for the world… Hayley is the best thing that ever happened to me.

Hartley: Yes, they are heros. I guess it is easier to say that about other women, and not so much ouselves--this is the hardest thing to do and we are ususally hard on ourselves. Ok, so most newly diagnosed moms that I come in contact with have the same questions: Will it get better? Will this ever be easier? What do you say to those women?

Carrie: I say that OT was the key to unlocking my child’s potential. A great OT, trained in sensory integration will make a difference. With the proper intervention and treatment, it DOES get better. OT alone isn’t the answer, but I believe it is the foundation to a child’s treatment plan. And oh my yes, it DOES get easier – promise!

Hartley: What does the advocacy work you have been doing mean to you?

Carrie: It’s something that I am just passionate about. If what I am doing keeps one family from feeling as desperate and frightened as I did 9 years ago, then I feel like I’ve accomplished something. As long as people are contacting me and looking for information, I’ve got work to do. My daughter’s story is one of hope and success. I’m willing to share it as long as people want to hear it.

Hartley: And it seems there are so many people out there still NEEDING to hear it and we are all so lucky that you are willing to lift our spirits with your family's story. On that note, you are always the first one to give a small bit of info to keep everyone’s spirits high as we navigate, what can often be a very scary path. Are there any little *gems* of wisdom you would like to share?

Carrie: Boy, I wish I did. I think I sound like a broken record most days, but truth be told, I don’t have any magic formula. If there is any formula for success, it’s not in any treatment plan; every child is different. Maybe it’s just this: there is strength in numbers, and I have met some of the most amazing women and men while advocating for SPD education, research and awareness. Reach out to families who, like you, are raising kiddos with SPD. Connect. You’ll be glad you did.

Hartley: I absolutely think that connection and support are the "magic pill"; it doesn't fix anything, but it sure makes life easier. Thank you Carrie, for your time, and your dedication to all of us and our families; you are changing the landscape of our children’s lives through your dedication and passion for advocating! In case I don’t say it enough; you are a fantastic mom and I am truly lucky to have you as a friend.

Carrie: Back at you Hartley. Thank you for keeping my days filled with laughter.

Back tomorrow with Gabriel's newly discovered vocabulary for describing his issues! Amazed me--

H

Asking For Help

Why is it so hard to ask for help?

I have to start this by saying that regardless of why; it just IS THAT HARD TO ASK FOR HELP.

There is some unwritten and unspoken rule of motherhood; if you are fertile enough to get pregnant, or in my opinion, smart enough to adopt, you are capable—no—wired to be able to parent successfully independent of everything else.

Some smart woman figured out that pregnancy wasn’t all it was cracked up to be. Let’s start there.

The myth is that it is supposed to be magical, amazing, and beautiful and you should “feel” like a mom. Who had that? I felt tired, sick, worried about miscarriage (I did miscarry before Nick’s pregnancy, but that is an entirely different post), hormonal as hell (had to take progesterone to avoid miscarriage) and downright uncomfortable.

Your husband is supposed to be straight out of a movie, where he is serving you hand over fist to make sure you don’t lift anything too heavy or aren’t allowed to drive too far for fear of early delivery on the road (here I have to pause to mention that my nephew was indeed delivered on the road; a dirt road in BFE Georgia on top of an anthill at 11:30 at night).

What really happens is that your husband is just as confused as you are because your personality has changed completely, and all he can hope is that at some point it changes back. Otherwise, this blessed event with be a catalyst for a divorce.

They don’t explain to you, either, that men are not particularly attached to the baby until it is born. They are not experiencing the grand “magical” baby feelings we are.

There is also the trips to the doctor, over and over again, where they tell you for the umpteenth time, to strip from the waist down, and lay in the stirrups—a ritual so “natural and intuitive” that each time we do it, we hide our underwear in our jeans. Who can explain that? Are we trying to trick our OB/GYN into believing we don’t wear underwear? Really? And our bra, that could be used to power a sail boat for a child, we hide that too. Again, in the hopes, apparently, that our doctor will think we don’t need a bra.

Then we are supposed to feel natural about the “vaginal ultrasound” which, at least, has the benefit of allowing us to hear the wondrous sound of our baby. And then, for the first time, we have a moment where we do feel like this is natural and intuitive—or at least we feel totally emotionally connected. We confuse them to be the same.

Fast forward to baby delivery, and I will skip the pieces that go along with how the baby actually gets here, because if I get started on watching myself stark naked being lifted, totally sedated, pregnant and all onto a table on an OVER HEAD mirror I may just have a panic attack.

But once the puking is over, and the meds are leaving my body, I am in a beautiful room in Overlake Hospital nursing my apparently starving baby with no milk in yet.

Women come in, nurses, assistant nurses, lactation consultants, doctors, and more and each of them takes a turn grabbing my breast(s) and shoving it in my son’s screaming mouth. This is lovely, but not intuitive.

OK, so now you are home with your baby and you should just know what to do. Maybe, to some extent, that is true. But you also have places like Babies R Us, your neighbors and your mom who can give you tons of (mostly) unsolicited advice on what to do, what to buy, where to go, and how to do it all. Don’t tell me you didn’t have people telling which brand of wipes to buy! That happened to me, and I am happy to pass along that tid bit of info to anyone who is interested.

But what happens when intuitively, there is something different about your child?

What happens when you need help, and your neighbors, your mom and even the “experts” at Babies R Us don’t seem to have the answer?

Why can’t we find someone else to ask for help?

We do try; I mean we talk to EVERY doctor in the yellow pages, and google our way to self diagnosis, but when it comes down to it, we have accomplished knowing more, having more acronyms and most likely found support for our kids in the way of Occupational Therapy, Speech Therapy and maybe even medication.

But, like I have said before, what about us?

After all of our work, our dedication, our late nights worrying, what do we have left? This may have taken a year, or more (for me I think it was easily 2 ½) and we are exhausted. Our “movie” like husband is having just as hard of a time, making us as a couple less likely to even acknowledge anything besides the needed yet ongoing discussion about our child’s difficulties, before we are in bed. If we can sleep.

We find comfort in our spouse because he is the one that understands best, about how our child really "is". Our friends and family try their best, but they don’t “get it” and although they want to help and be supportive, but there really isn’t much more they could do.

We begin to feel isolated; that no one else in the history of the world has ever been through this or understands this. It is a hard road to be on, and the longer we are on it, the more it feels permanent. No play dates, no visits to friend's houses, we avoid the playground and begin to keep everything inside--our emotions and our family.

Then we find out that there is a place online to find help. We have to join, but we don’t ask our questions right away because what if we sound stupid or naive? That would be horrible after all the time we spent researching and obsessing over our child’s diagnosis.

We sit back and read. We read other people’s struggles, the feed back they get, and we feel good about it. Good that they are just like we are. Their family is JUST LIKE OURS.

Eventually, we are able to post our own question, because, we feel we are still slightly anonymous. We get our own responses. It is addictive. We have found a “home” base of moms who understand our child—something we weren’t even sure existed.

But then, sometimes, things are worse than that, and this is where we struggle.

We wake up to screaming, meltdowns, and send our kid off to school where the teacher doesn’t understand SPD (or anything else for that matter) and is shoving our “square kid” into a “round hole”. They return to us a child who is out of sync on a level that we are not sure we can tolerate (let alone do this for the rest of our life), but still have to take him (and perhaps the siblings) to Occupational Therapy, and Speech and drag them to gymnastics or Tae Kwan Do, because they are all “the right” thing to do. And yes, they are necessary, and we want to be “good” moms by doing everything “right” but at some point we are just exhausted.

EXHAUSTED.

We need help—a different kind of help that makes us feel like we don’t know it all, have it all together and that for whatever reason makes us doubt whether or not we are good moms. And there is nothing more important to a mother than being a “good mom” in the eyes of her husband, family and friends. We can ignore some comments, and don’t need to be perfect, but we sure want to be seen as having it together when it comes to something so “intuitive” as raising our kids. In a group of mothers, who have the "same" issues as us, we now feel like maybe they did it alone, and are afraid, again, to admit that our family is in crisis.

But NO ONE does it alone. That is the true myth; right up there with "pregnancy is beautiful" and your husband "will be your servant" while you are pregnant. It is a fairytale as well crafted as Cinderella. This is real life, and ALL of us have problems. Promise.

So now comes the real test. There are people you *could* contact. People who have said you could call them, people that have said they understand your life, and that you can vent to them in person even. But how to do you take them up on that?

We stop ourselves for fear of looking bad or stupid. We stop ourselves because although you have said it in your head a dozen times (a day) you don’t want anyone else to know you can’t do it alone. But, you can’t. No one can.

You take the leap.

You pick up the phone, and chances are when you hear her voice, you will either cry or won’t be able to shut up. And once you do this, once you reach out and make that in person connection, your life will not be the same. You will have officially found out that you can’t do it alone and that is truly what should be intuitive.

And even more important, you now have a friend; a real person, in real life, who you can rely on. You can call and vent and cry, or brainstorm how to deal with the IEP meeting or the bullies at school or maybe you will just get a new recipe for cookies (I have some really good ones!). But probably, you will do it all.

Now what are you waiting for?
H