Showing posts with label First Things First. Show all posts
Showing posts with label First Things First. Show all posts

FTF 2011 Announcement!

Happy New Year!  It's that time again - the announcement of the 2011 First Things First contributors! 

The FTF series is dedicated to reminding parents that they need to take care of themselves. A renewal of our commitment to take the time required to nurture not just our children, but ourselves. We have dedicated all of our energy to making sure our children are taken care of, but now is the time to remember to focus on our own physical, mental and emotional health, our spirituality, as well as our relationships with friends and our spouse. This year, I want to encourage all of you to take care yourself. And I hope each month our guest writer will inspire you to do just that.

On the first of each month, the writing series will feature a different guest blogger/writer/author.  If you haven't read the 2010 articles, I highly suggest you check them out (there is a listing under the FTF tab at the top)! 

Without further adieu....

The First Things First 2011 Contributors are...

February: Maria Melee, http://www.mommymelee.com/
March: Sarah Hoffman, http://www.sarahhoffmanwriter.com/
April: Alysia Butler, http://www.trydefyinggravity.com/
May: Shannon Rosa, http://www.squidalicious.com/
June: Stuart Duncan, http://www.stuartduncan.name/
July: Caitlin Wray, http://www.welcome-to-normal.com/
August: Josylyn Gray, http://www.starkravingmadmommy.com/
September:  Laurie Wallin, http://www.lauriewallin.com/
October: Hartley Steiner, http://www.hartleysboys.com/
November: Adrienne Jones, http://www.nopointsforstyle.com/
December: Jennifer Myers,  http://www.jennyalice.blogspot.com/

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.

FTF: Disabled x2 by Leslie O'Donnell

Here is November's First Things First article. This article comes from Leslie O'Donnell. Although Leslie’s background is in disability activism, psych education & special-ed teaching, Leslie O'Donnell now finds herself in the full-time career of special-needs parenting. The mother of a neurologically disabled toddler, Leslie asks the tough questions and offers the tougher answers.

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Disabled x2
By Leslie O'Donnell

Two weeks ago, I woke up at 5:30am in excruciating and unfamiliar pain. The doctor on-call that night listened to my symptoms and thought it sounded like kidney stones. What I heard was, “You will have to pull a still-exhausted Jamie out of bed, and torture him and everyone else by dragging him through a long visit to just the sort of medical facility that he has really bad memories of and phobias about. This will potentially lead into him getting to leave only by being torn away from you, who will have to stay there getting treated, therefore NOT BE THERE TO BE HIS MOMMY.” Suddenly, my pain levels and diagnostic prospects mattered a whole lot less. Well, they did to me, anyway. My husband, devoted daddy and husband that he is, was having none of it. “Just how expendable do you think you are?!?!” he not-quite-asked me.

It’s funny. You never expect it to be flattering if your husband looks at you as if you were the most infuriating idiot in the world. As it turns out, it can be.

Testing showed that my kidneys were fine, but my gallbladder had had just about enough of me. I had to resign myself to all the infinite lamentable ramifications of NOT BEING THERE for my child, that a special needs mommy is a little too good at thinking of. Furthermore, while they just barely managed to remove the organ laproscopically, I had to resign myself to a one day emergency surgery that still managed to turn into three days and two nights in the hospital. Still, now that I’ve been home for a week, Jamie has mostly recovered, and I can again hug him silly without immediately screaming in pain or throwing up, it is somewhat easier to remind myself that by putting him through those three days without me, I was able to avoid a more intensive version of the surgery which would have kept us apart for far longer. More importantly, I was able to make sure, at least on this account, that Mommy would remain with him, in a more general sense, to get him through all the other traumatic surprises life can hold in store.

FTF: Finding My Inner Self by Diane Renna

This is October's First Things First article, but because of the SPD Awarness event, it didn't get posted!  But no worries, here it is!  This article comes from  Diane M. Renna, author of “Meghan’s World: The Story of One Girl’s Triumph over Sensory Processing Disorder,” Child Advocate, Reiki Master Teacher, Co-Founder of the Sensory Enriched Playgroup & Parent Learning Program©

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Finding My Inner-Self
By Diane M. Renna

I can vaguely remember my Dad telling me to, “just go take a warm bath and relax and read a book.” It was about eight years ago. I could barely sit still myself and I thought, “There is NO WAY I would be able to relax in the tub; let alone read a book in it.” I tried…I think I lasted five minutes tops. I am sure the book was also related to how I could help my children to boot. I would often hide-away in the bathroom with my hands held over my head…praying for patience and help…”that this was not my daughter… please help us find help and get through this…I would help others in return.” I was overwhelmed and wanted to help my daughter. My husband, Lorenzo, and his partner, Diego, had a pizzeria 45 minutes away and they worked all day and night. He would help when he could, but mostly everything fell on my shoulders. I was lucky enough to be a stay-at-home mom. However, there was not as much information about Sensory Processing Disorder (SPD) then as there is now. I often had to drive long distances to get help. I was blessed to find therapists that worked with me and taught me what to do.

At this time in my life, my daughter was diagnosed with severe Sensory Integration Dysfunction (SPD) and she was attending an integrated preschool. We were starting our family journey to wellness. Meghan’s younger brother, Michael, also was diagnosed with a milder SPD and it did not affect his everyday life as dramatically as it had affected Meghan’s. Let’s face it…I was hyper and always on the go myself. I realized I most likely had SPD myself.

I devoted all my time and energy into helping Meghan and Michael. I read, learned, played, and grew as a person along the way. I applied the same traditional and alternative therapies/techniques for myself as well. Soon, we all started getting better. Believe it or not, I was even taking long Epson Salt baths and sleeping well. It took a long time, but it was worth it. If it wasn’t for other parents and therapists dedicated to helping children with SPD and Autism Spectrum Disorders (ASD) kids/families, I don’t know where we would be. I never dwelled upon labels…in fact…most of what helped Meghan and Michael…were therapies/diets/techniques designed for children diagnosed with ASD. We did have fun too…we painted in the backyard; jumped on the trampoline and swung on the swings…a great sensory diet is fun for all!!

FTF: Sick and Tired by Amy Sheridan

Here is September's First Things First article, which was written by Amy Sheridan who is the mom to a son with Asperger's and blogs at Asperger Ninja.

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".

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Sick and Tired, How a Single Mother of a Special Needs Child Deals with Sudden Illness

As parents, we always worry if our children get sick. That’s part of our job. We are

prepared before they are even born, having been told countless stories by our parents, friends who have children and sometimes, complete strangers who are more than happy to spin the tales of their children’s maladies.

But, no one ever truly prepares you for the time when YOU get sick. There is no chapter in the Parents Handbook that tells you how to prevent or be ready for the time that you need to be taken care of. That’s usually not an option. Moms, Dads and caregivers are certainly known for working when they are under the weather, but there may come a time when you have to actually go to the hospital. In most of these incidents, the other parent will take care of the child (or children) while the other parent is ill. But what if you don’t have that choice?

I’m a single mother of my son, Nathan, who has Asperger’s. When I was married, and a trip to the ER was necessary, my husband did the honors and took care of our child while I convalesced. I had been lucky for the past few years, not having any major illnesses that would put me down for the count. This one, however, came quite out of nowhere.

FTF: Emotional Acceptance by Cat Lichtenbelt

Here is August's First Things First article, which was written by Cat Lichtenbelt who writes at http://www.sensoryflow.com/.  Like all of our articles, I hope it provides you inspiration to take care of your own needs!

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".

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I see acceptance as coming to an agreement. It is like going to a meeting of the minds and everyone walking out on the same page with the same purpose and goals for the future. As much as I’d like to say I am there, I am not, at least not yet. I have had some meetings, but I have never walked out with the same purpose, I merely walked out glad to have the meeting over with. Many of these meeting took place in my head and only Me, Myself and I attended, and we still did not agree!

To get to acceptance, you must first encounter other emotions, or stages. I’m not sure I ever truly went through shock and denial or any of the other well known stages of grief. I think I went through my own SPD, Sensory Parenting Discovery stages.

My first stage was the Maybe stage. “ Maybe my child is a bit different”, “maybe he is more active”, “maybe this school is not working for him”, “maybe with some therapy he can fit in”, “maybe if we just understood him more”. “Maybe I’m crazy”, or even better, “maybe they (the school system) are crazy and too institutionalized”. This stage also included, “maybe he has a disorder” and he was then diagnosed with one, Sensory Processing Disorder. Maybe is a good stage, it is a stage of questioning yourself and your child’s needs, and the priority of those needs.

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".

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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.

FTF “Togetherness; A Dad’s Perspective on Marriage” by Gavin Bollard

Here is June's First Things First article, which was written by Gavin Bollard who is not only raising two darling kiddos with ASD, but also has Aspergers himself.  You can find him blogging at Life With Aspergers. : )

For more information about First Things First click here. There is also a list of the previous First Things First articles under the "Favorite Posts Tab" at the top -- with the obvious title of "First Things First Articles".

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In traditional society, mothers and fathers tend to live in completely different worlds. The home, the kids and school are all in the mother’s realm while the father is more likely to take care of breadwinning and financial matters.

The working week has expanded to take in weekends and the hours of work have lengthened too, courtesy of the traffic problems. Many fathers today hardly see their children and not because of the high divorce rate either. It’s simply that they have to leave before the kids are awake and they don’t get home until after bedtime. Some fathers have frequent out of state business which further reduces their family time.

Today’s fathers are simply fighting for free time. We are weekend fathers, trying desperately to squeeze a week of family time into a few spare hours on the weekend.

FTF "All Showers Lead to Australia" by Hartley Steiner

Here is May's First Things First article, which was written by me. : )  For more information about First Things First click here.  There is also a list of the previous First Things First articles under the "Favorite Posts Tab" at the top -- with the obvious title of "First Things First Articles". 

As always, please leave your comments below!

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“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.

FTF "Write It Down" by Jennie Linthorst



Write It Down, by Jennie Linthost. The third article in the series of First Things First.

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Life moves fast when you have a child with special needs. As parents, we’re constantly motivating our children with Herculean efforts, affect, patience, problem-solving, and love, to move through another day of progress out in a world that doesn’t seem to quite understand the nuances of our days. From breakfast to shoe tying, getting out the door, school, therapies, grueling homework, play dates, dinner, bath and bed, we go through a million rollercoaster rides of thoughts and emotions inside ourselves. Yet, how often do we take a moment to self-reflect on what we are thinking and feeling? How often do we acknowledge our self-doubt, our shame, our judgments of our children, and our amazing ability to work through these thoughts and show up in the world everyday as we do?

Working in the field of poetry therapy, I have spent years witnessing the power of self-expression through writing. When an individual is offered a piece of inspirational writing to read, and then offered the space, the safety and time to self–reflect on what it might bring up about their own life, an amazing thing happens --a voice inside them begins to work through the muck, and confusion of whatever is happening in their present life. The true power and the healing takes place as they allow this voice to write it down on an empty page with no rules, critiquing or editing. And suddenly they have been heard. It is has been taken off of their hearts and put on the page.

People often ask me how I use writing for my own healing. I prefer to have a monthly group where I can use the poetry therapy process to be inspired, and to have the time to write and share with the group. But, as I said earlier, we parents don’t always have the luxury of a structured writing group and a poetry therapy facilitator.

There are ways in our crazy lives to stop and reflect, and to work these moments out on the page. Our daily experiences are the inspiration. I am always listening for the moments in my day where I feel my thoughts and emotions are being triggered by something. Maybe it’s a moment of frustration with my son in the morning, or a comment made by a teacher or therapist that is working with him during the day, or how my heart hurts in the grocery store when I feel envious and angry at a family that seems so typical and perfect. It’s the little glances from my husband when I feel I have let him down, or raw moments of honesty where we lift each other up. These are the nuggets of gold to be written down and worked through on the page.

I carry a small notebook in my car and in my purse, and when these moments of thoughts occur, I jot them down. I have time waiting in the car pool lane, or while a therapist is working with my child, or before I go to bed at night. I use these moments to begin a poem. There is inevitably a turnaround in my thoughts- a magical place inside myself that knows how to steer me back to self-love and forgiveness. I give those scary places a voice, and then another greater voice inside me seems to know how to calm me down. I feel less alone and more at peace.

Recently I have noticed that I have anxiety around how I seem to define myself as “good” or “bad” depending on how well my son’s day is going. If it is a good day at school and I hear a positive comment on his progress, I am elated, I am a good mom, I can go on and have a peaceful, joyful day. If I see him struggling in the classroom or hear a negative comment from a therapist or teacher, my whole identity seems to crumble, and my day becomes heavy and dark. As I watch this pattern in myself, I feel determined to see a new perspective. I can see that in the big picture of things, my son is absolutely progressing from where he had been at the beginning of the school year. He has “good” days and “bad” days, but overall it is a clear upward climb of progress.

I know that this is one of those nuggets of gold that needs to be worked out on the page. As I begin to write about it, I notice that I begin writing in the third person, observing how other parents are doing this in their own hearts and minds everyday, as they watch their child. It is easier for my voice to start there, and as I continue to write, it becomes about me, and the way I am learning to step back from the ups and downs, and to see that I as a woman am not defined by my son’s day. I see that I can stand tall, and know that the present moment is just what it is, and nothing needs to be different at all for me to be okay, and at peace. It is in the writing of the following poem, that the greater voice of me finds what it needs to say to me.

I see the parents.
They sit on the sidelines
of a therapy room,
arms folded,
temporarily relieved for the respite.

Their eyes tell me the story-
the fear, the hope, the shame-
the secret judgments
of a life they feel went wrong.

Their eyes dance or drop,
depending on the child’s progress that day.

I know that place.
I have risen and fallen a thousand times
with my son.

But, I am trying a different path,
a smoother, more easy terrain,
where I can step out of the role of mother,
and see a woman standing tall,
walking gently in and out of the moments of a day.

She knows that nothing needs to be fixed.
Nothing needs to be different
than it is right now.

Over the years since my son’s diagnosis, I have written a large collection of poems that express my personal experience as a mother of a child with special needs. In addition through my work as an expressive writing coach, I have had the honor of working one on one and in groups with moms from around the world with children with special needs, helping them find their voice of inner wisdom and guidance. This is one way, of many, to consider asking yourself, “how do I move through the confusing, painful thoughts and feelings I face on my journey as a parent?” Maybe you will consider writing them down, and listening for that higher voice inside of you that always has the answers, and wants to tell you the healing words you need to hear.

By Jennie Linthorst, mother of Graham, whose story is featured in the documentary film: Autistic-Like: Graham’s Story http://www.autisticlike.com/, facilitator of expressive poetry workshops http://www.lifespeakspoetrytherapy.com/, and author of the book of poems, A Mother’s Journey.

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Next month I will be the featured writer (yay!) and then June brings us Gavin Bollard from Life With Aspergers.

Please feel free to leave comments for Jennie here!
H

Photo: Jennie, her husband Erik and their son Graham.

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!