FTF: Friendships Lost Leave Openings for Others by Gina St. Aubin

As my First Things First series comes to a close, I am moved by all of the essays that have come before this, but also truly inspired by our last 2010 FTF post.  So, here is December's First Things First article, which was written by Gina St. Aubin In Colorado, Gina St. Aubin is a wife, mother, blogger, and advocate for those with intellectual and physical challenges. You can visit her blog Special Happens, follow her on Twitter as @Special_Happens, or look for her on FaceBook.

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Guest Posts and FTF" tab at the top -- with the obvious title of "First Things First Articles".   I will be announcing the 2011 FTF writers in just a few days -- LOOK FOR THEM! : )

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Friendships Lost Leave Openings for Others

by Gina St. Aubin

Who hasn’t looked around and taken an unwitting inventory of their lives; which parent of a special needs child doesn’t do this on a regular basis? In the back of our minds, on days when all seems in order, along with days of disarray, do we not consider which direction we’re going, how many dreams have been reached, mended, rearranged or forgotten? What will our next steps be? Who is in our ventilation system? What supports do we have?

And there we have it. Our supports. Family? Other parents? Other parents of special needs children, neighbors, friends?

Our friendships are probably the hardest to count. The hardest to consider. All around us, in a constant state of flux, it seems our friends and our friendships have changed dramatically. Many who surrounded and supported us through our ‘previous’ or ‘normal’ life may have all but disappeared.

As best I can recall, we thought it was a slow death of friendships, but in reality it was within a head spin. After J’s initial diagnosis, eyes still in a stare of disbelief, we found ourselves robotically picking up, dusting off and beginning the navigation of what was to be our life. Looking up and finding that not many people were standing with us left us feeling beaten. Some wanted to understand, to be involved, then shrugged with the lax of non-investment. Some family spoke in concern, yet displayed ambivalence and disinterest, finally making their distance. We were left with very few supports, very little understanding and an invisible roadmap to a place that shared no resemblance of our initial dreams.

Familiar? Most of us share a similar story of the blossom of our travels. As the road crumbled, forked or waved (depending on your perspective), silhouettes of friendships we held softly, sometimes abruptly, disappeared. We thought they were there, their presence of security and camaraderie beside us until we took a focused look in their direction and there was an open space...a void.

Changes in Attitude

I have a friend that is struggling right now.  Struggling like we all do from time to time.  A crisis of life -- of where we are going, of why we are on the path we are on, of how to find balance.  It is a deep thing to deal with. 

That said, I also find that as special needs parents these types of personal struggles are usually a sign of growth.  Personal growth that says, "Wait.  What about me?  Is this the way I want my life to go?"  And sometimes, we need to hit 'refresh' on our brains. 

Sometimes, not always, but sometimes, it is our perspectives that need changing more than our lives.  It is one of those "Don't throw the baby out with the bathwater" things.  Don't decide you need a new job, or a new husband, or a new house -- when what you might need is less of a physical change and more of a mental one.

And I thought, why not share that with all of my 'friends'?  Who knows what you all are going through -- but someone might just need this advice right now.

So, here is the letter (modified slightly) that I wrote one of my best girlfriends -- one that has special kiddos just like us. 

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Unsolicited advice – because I care.

Here is what works for me when I am feeling like things are out of control, disproportionate or that my marriage is bound to buckle under our current stress:

FTF "Vows of Special Needs Parents" by Chynna Laird

This is our second First Things First article focusing on special needs parents taking care of themselves. The theme today is on keeping a strong marriage -- putting your relationship first.

This is such an important topic for those with special needs kids, that we are doing two articles this year on the subject. This one, from a woman's perspective, and then in June we will be featuring Gavin Bollard (life-with-aspergers.blogspot.com) on the same subject from a man's perspective.

As always, please feel free to comment.

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When a family has a child with tremendous needs, what we do for her can sometimes overshadow everything else, including our relationship with our significant other. Paying attention to being a couple is important not only for the emotional support and companionship but also because a strong family has a strong couple unit at its head. And that’s important for everyone.

In May of this year, my partner, Steve, and I will have been together for 11 years. We used to enjoy going out to movies, dinner, the opera (Oh YES! Steve loves me that much!) and to the occasional football game (Oh YES! I love him that much!). We enjoyed our ‘Date Nights’, our intimate times alone and that we could always take the time to sit and talk when we needed to. Then we had Jaimie and many of those things ended shortly after she was born.

Jaimie was an extremely difficult baby. It took the two of us to do the simplest tasks for her because she fought everything so hard. To change a diaper, one of us had to hold her down while the other frantically cleaned her up. To give her a bath, one of us had to hold her in the tub (or baby tub or kitchen sink depending on which location gave her the least amount of stress) while the other washed her at lightening speed. To feed her, to clothe her, to comfort her, to get her to go to sleep, to try playing with her…you get the idea. Then after a few months, Jaimie refused to even let Steve do anything for her. It was very lonely for both Steve and for me.

Imagine for a moment how heart wrenching it would be to have your child reject you when all you’ve done is loved her! That was Steve’s side of things. For me, my entire day and night was spent caring for our child because there was something about Steve that triggered all of the sensory sensitivities that Jaimie hated. She couldn’t stand his touch, his voice, his smell…nothing. And that had a huge impact on our relationship.

Steve didn’t feel like he was part of our family anymore and, even worse, we didn’t feel like a couple anymore. We got into that mode where he got up, went to work, I cared for Jaimie all day, he came home and Jaimie screamed until we finally got her to sleep (for awhile) then we were both too exhausted to chat. We were both hurting so much but weren’t able to let it out.

Then I decided we had to.

This happens to many parents of special needs children. We become so focused on meeting our child’s needs that we forget about our own—separately and together. And that’s why, sadly, a lot of couples break up when they have a child with high needs. But my view, in any situation, has always been that it takes a lot more strength and courage to stick together and work it out together than just to give up. We needed each other and, most importantly, Jaimie needed us. So, one night, we took the time to sit and talk about our relationship and what we could do to make things better. We each promised to do the following things:

(1) Remember that our child’s needs are greater than what one of us can provide for her on our own. Invest in your relationship because together you can bring more resources to bear for the care of your child.

(2) Remember to invest in ourselves. We have to see ourselves, both individually and as a couple, as a limited resource and that without investing in oneself and one's relationship, that resource will fail.

(3) Remember to take time for intimacy. Even if all we have is 10 minutes each day alone, we need to take that time to cuddle together, chat about other things going on besides our exceptional child and remind ourselves of why we became a couple in the first place.

(4) Remember to talk. Communication is vital in any relationship because when you stop talking, you don’t know what’s truly going on. Never stop talking.

(5) Remember that it’s okay to be away from our child for a little while to take a ‘mental break’. Parents of special needs children, especially mothers, often feel tremendous guilt being away from our child. I still feel that Mama Guilt when I take a bit of time for myself. It isn’t because I don’t think Steve can’t care for the kids; it’s more because they need me so much, especially Jaimie. And one tiny thing that isn’t constant…that he may forget…and it can set Jaimie off for the day. Jaimie needs to see that I go out and come back. And I need to go out to regroup. Such time is important to everyone. The last thing we want to happen is for resentment to fester and grow.

(6) Remember to meet our needs first. We can’t possibly care for our high needs child when we aren’t in tip-top shape. It may sound selfish, but by self-investing you’ll be able to sustain yourself more continually to meet your child's needs. Be as kind with each other as much as possible, recognize each other's limitations and fill in each other's gaps wherever possible. Take the steps to be healthy in every facet—emotionally, physically, psychologically, mentally and spiritually—to be ready to handle the bumps that come along.

(7) Remember to reach out. Oftentimes, parents of special needs children forget to grab onto the help when it’s offered or even recognize that we need it. Address the challenges, deal with guilt and fear and seek the support of services, friends and/or family to share the tasks of care.

The above list is what Steve and I call our ‘vows’ of being special needs parents. And we always check into it when we feel a little out of sync in our relationship. Eleven years together is a long time. Sure we get on each other’s nerves once in awhile but I’ve gotten a huge reward for our hard work: a best friend, a lover, a confidant, a bodyguard, a back-up, a partner in life and the best damned father in the world. For me, next to my children, there is nothing that means more to me than Steve and no better investment.

By Chynna Laird, author of I'm Not Weird I Have SPD and Not Just Spirited; A Mom's Sensational Journey With SPD. Check out her blog too!

Special Needs Marraige

“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation's largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have seen this stat virtually everywhere, heard it even more places and for that matter used it myself. It can be found on the Oprah.com website.

I searched this evening online to see what the actual study said; what the details were, the population, the ages of the children, the ages of the parents, the length of time studied, and honestly I can’t find anything. Well, that’s not entirely true, I found a TON of articles talking about how they couldn’t find a study to prove this quote on the Oprah.com site either.

I have been thinking a lot about marriage lately – specifically special needs parents attempting to make a marriage work in between taking care of a child who demands so much of their time, attention, energy, creativity and emotion.

This is the topic of March 1st’s First Things First article written by Chynna Laird (which obviously isn’t out yet, but will be on Monday, until then you can see her interview here), so with that fresh in my mind I have begun to think about how important it is to spend time focusing on ways I can support my marriage.

I can think of many ways, and could even write you a list, but really, the simplest answer is usually the best one right?

The easiest way I think you can support your marraige is simply by talking about something OTHER than your kids.

My husband is on a plane flying home from work as I type this. As strange as that sounds, he spent the day in San Francisco at the Chinese Embassy getting his last minute Visa paperwork together for a two week trip to Asia next month.

We got to talk on the phone around lunch time. I had dropped Matt off at school and was RUSHING to get my hair cut (first time since October) before I have my author photos taken on Sunday. I sat in the parking lot talking to him on my cellphone.

Jeff talked to me about China town, the cool pagodas, and how close he was to Fisherman’s Warf. He had spent the morning with a friend from work, the two of them preparing for their trip to Asia, having lunch, taking meetings by phone, and enjoying their day with the extra long commute.

I talked about the errands I needed to run, the funny things the boys had said during the day, and how Matt had eaten 7 cookies for lunch – much to my annoyance, then hurried off the phone, because if I didn’t hurry, I wouldn’t be done in time to get the boys off the bus.

Sure on the surface it sounds like Jeff has the cooler life. And arguably he probably does. But that's not the point.

The point is that making the time to talk to each other and be involved in one another’s life aside from the chidlren, is what matters.

It is too easy to get caught in that constant communication loop that is centered around updates on the children -- no matter what their challenges are.

Being a couple means spending time talking to each other about each other. Remember when you were dating? You didn't sit around and solve problems during every meal. You just talked about how much you'd love to visit Chile, or about a new book you want to read, or about the latest office romance. You talked about your own life.

Here is my advice, shelve the discussions about your child's needs, or wants, and your worries associated with them for the weekend. Instead talk about things you and your spouse actually enjoy. You do remember what that is, right?

As for Oprah.com and Autism Speaks's "80%" divorce rate stat, in the words of my mom, “Don’t make shit up.”

H

Photo: A super close up of the shell picees pilled up on the beach in Mexico (where we didn't talk about our kiddo's issues once!).

FTF "A Jaw Dropping Experience" by Marla Roth-Fisch

Towards the end of summer in sunny Colorado, my entire family wanted to get one last outdoor swim in. My husband and I swam and played with the kids in the large pool, enjoying a game of keep away.

As my son jumped wildly with excitement to catch the water filled sponge ball, which almost careened our heads from the other team, (my husband and daughter), he accidentally elbowed me with a left jab to the right side of my face.

As I heard the crack in my jaw, I didn’t think much of it at the time, except that it hurt…a lot! I wanted to shrug it off as my son’s apologizes overflowed.

I hesitated to show the pain and tears for fear it would upset him even more, my son has Sensory Processing Disorder, and does really well, but at times his feelings of empathy and concern are over whelming for him.

“It’s an accident, I’ll be fine” I repeated several times, attempting to stretch my jaw from side to side.

Letting the aches and challenges of eating go on and on for months, as each day I thought it would get better, I finally surrendered to the fact that I need to get some help; perhaps there’s something really wrong?

The kids and I went for our routine dental check up and cleaning. After explaining why I couldn’t hold my mouth open as wide as they would have liked, my dentist recommended that I visit with my orthodontist first about the jaw, then perhaps see a specialist.

I scheduled an appointment with the orthodontist, and had extensive x-rays taken; a cool kind of X-ray that circles your entire head giving a panoramic view of your jaw.

From what they saw, there was no “visible” crack in my jaw. Big time relief! Prior to leaving he adjusted my retainer so that the muscles of the jaw would relax, and fall into place. Ah…pretty easy fix, I thought, just have to wear a big bulky upper retainer 24/7 for the next couple of weeks.

As the weeks passed, I felt better but still as I opened my mouth it veered to the right, the bite was off and caused me to frequently bite my lip…not a pretty sight.

I will preface this by saying that I am a firm believer in both acupuncture and chiropractic work when done by a trusting and experienced professional: Next I was off to the chiropractor.

After an in depth consultation and some minor tweaking of my body, the chiropractor said that I have a dislocated jaw, and we need to work on it for some time…Yikes, what is ‘some time’? Did I have the time, could I make the time? Who has time?

Throwing in the towel about now sounded good; I’ll live with the pain.

Knowing that this treatment can make me better, I opted to continue. Thank goodness for insurance and the little positive voice in my head!

So, I scheduled several appointments at a local holistic healing center for adjusting the jaw back into its proper spot.

The treatment at times was definitely painful, however, using relaxing techniques, heat, cold, massage, the adjustments and Advil, I got through.

While in the waiting area of Whole Health Center, I noticed that there was a brochure on the treatment called Facial Rejuvenation. Hmmm…After all these months of pain, I could really use a “lift” in my face, and tackling the fine lines and wrinkles could be a bonus!

I started seeing my acupuncturist for the muscles surrounding the jaw. The chi (energy) and blood had stagnated contributing to the discomfort, getting needles stuck in my face was a welcome relief, if you can believe that!

Feeling much better, yawning with ease, more relaxed around my family, and realizing that if you don’t take care of yourself, there is no way you can be the best mom and wife to your family.
If you are on top of your game, everyone is a winner!

Marla Roth-Fisch, award winning author and illustrator of Sensitive Sam

Resiliency

Yesterday on the way to a yard sale with my family, we stopped at Bank of America to get some cash and turned around in the gas station parking lot. As we drove through the parking lot, there was this woman, carrying a car seat across the parking lot with a preschooler in tow; they were heading towards a man standing behind his truck. The man bent down, lit up and the boy went running to him. They were meeting for his visitation.

I don't know what exactly struck me about this, but it really got my mind thinking about how hard it is to keep a family together. Not that marriage for anyone is easy, but for families with special needs children the chaos and stress level can be so high, it is a wonder that anyone stays married. Yet, it might be even more paramount that families with young special needs kids do stay married--those adults need the support of their spouse more so perhaps than average couples.

I had friends visit last night, great friends actually, and she is recently engaged for the first time at 42. I couldn't be happier for her. Her fiance has been married before, and I read recently that the divorce rate for second marriages is like 83%--about the same rate for families with special needs children. 83%-that is amazingly high.

With the visitation scene fresh in my mind, and my friend entering into a new marriage (she has a young son as well) I began thinking about what it really takes to maintain a relationship--what it takes to beat the odds. How can my family maintain resiliency?

James May has a great lecture on the subject here in our area, but even after that talk (two years ago) my husband and I didn't feel like we got any great tips. We actually left that meeting feeling thankful that our "special needs" kiddo wasn't worse. Horrible, I know, but being in a room full of families who had kids that needed physical assistance for everything from eating to walking made us feel thankful to have the problems we did. I definitely do not have the ability to lecture on resiliency, and I by no means am an expert on the subject. However, I do know that there are a few things that help me, and so for all of you moms out there that feel like you are about to become a statistic, here are my two cents:

Humor--James May suggested this too, and most of you know me well enough to know that this is about all I have most days. My husband and I genuinely make each other laugh. That attracted me to him to begin with and sure helps still. Also, there are many days when the yelling, screaming, and feeling completely useless in helping our son that we have to step backwards and simply laugh. How in god's green earth did we get here? Three boys, chaos, a dog, a mortgage, appointments....It adds up quickly--and sometimes I still feel like that 21 year old girl who was barely making rent. LOL

Support--I can't stress this one enough. I am so incredibly lucky to have women on my side, women who have kids like mine, in all of the good and bad ways. Those women hold me up emotionally when my legs are too weak to stand. Find an emotional support system--those women are NOT necessarily your best buds, they are not necessarily your social group, they ARE the only people in the world who "get it". Online or on the phone find someone you can reach out to when your life overwhelms you.

Babysitter--Find someone who can handle your kids. Anyone. A friend, a family member, a teacher, neighbor, ANYONE. Then leave them. :) You MUST have time away from the chaos, even when the chaos is at its worst and you think that the world might literally stop spinning if you took any time for yourself. It might start that you go to visit one of those women on your "support" list--another family that no matter how bad your kid is, won't care. Will empathize, not criticize, and will not under any circumstances think that you should simply be harsher or spank more.

That is my three step program. I think all good programs have 12 steps, but that seems like a lot to remember, and I know you are reading this between your child's meltdowns or OT appointments and don't have the time to read nine more steps. LOL Oh, and I want you to actually use these tips. Start practicing these today; it will give your marriage a fighting chance and I know you are *great* at fighting for your family--you have been honing those skills while battling the insurance company, the neurologist, the school district and god knows how many others (in laws, neighbors, grocery store starers)--start fighting for your marraige too!

I hope you are all having a great weekend. I am going to watch some football with my hubby, shower and head to a play with my girlfriend Shellie; Spring Awakening. Seems like an odd one for the cold and wet fall here in Seattle, but time away is really all that matters.

H