Meet Kim Stagliano, Author of All I Can Handle, I'm No Mother Teresa

From the outside, some may view Kim Stagliano's life raising three daughters with autism as completely overwhelming, full of despair and unimaginable.  I can tell you from reading her memoir, or "Kimoir" as she fondly calls it, her view is remarkably different.

In her book, All I Can Handle, I'm No Mother Teresa, (with a forward by Jenny McCarthy), she provides an intimate view inside her life from a place of love, honesty, humor, joy, and vulnerability.

I highly recommend her book not only to parents raising a child with autism but anyone with a curiosity to gain a greater awareness and understanding of what life looks like raising a child, or in Kim's case, three children, with autism.  It will feel like you're chatting, laughing and crying with a dear friend.

In addition to writing her "Kimoir", Kim is the Managing Editor of Age of Autism, the nation's first daily web newspaper about the autism epidemic.  If you haven't checked it out, I encourage you to do so.  She also writes for The Huffington Post, The Debutante Ball, The Dallas Morning News Moms Blog and she is on the editorial staff of the Autism File Magazine.

I admire her unwavering commitment to speak out for what she believes.  She does not allow anyone tell her what to think, feel or do and I love that she leads her life from a place of knowing what is best for her and her family.  She's never tells you what you should or shouldn't do either.  She completely respects that you are the one that knows your own answers.  Her intention is to share her experience and lead by example and that makes her a true leader in my eyes!

I asked to interview her for my blog post this month and she graciously said yes.  So, yesterday, we called each other from opposite coasts via Skype which is the recorded conversation below.  I love the magic of technology!

If you would like more information about Kim and her book, please visit her website: www.kimstagliano.com.  Enjoy!

 

 

Interview with Kim Stagliano, author of All I Can Handle, I'm No Mother Teresa from diane Hunter on Vimeo.

Blogging for Awareness, Day 30

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 30:

Because it’s the last day of the Membership Drive!!!!.

You’ve waited until the last minute, and that’s okay. But I hope, hope, hope you’ll join Hopeful Parents today. Your dues help us keep our website running, and will help us create programs and activities that benefit you and your families. Members receive a monthly newsletter, the opportunity to meet each other, and discounts to retail stores and entertainment. Your voice will help us advocate for ourselves and for our children, will help us create awareness around the issues with caregiving and special needs, will remind all of us to take care of ourselves in the process. Please join Hopeful Parents today!

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Unexpected Gifts

In three short days, my son will be seven. SEVEN! How did this happen?? I can remember when making it to seven days was an accomplishment.  Then seven months; that was just four days after he finally came home from the hospital.  I never imagined what this would be like when it finally arrived; I wasn't sure I could think that far ahead.

The thing is, he doesn’t know he’s having a birthday; he doesn’t understand how incredibly significant this milestone is.  He won’t miss the cake or the party; he doesn’t grasp that the brightly colored paper-wrapped packages are tributes to his indomitable spirit and his engaging smile.  He won’t miss the fact that his classmates in his very small, highly-specialized program don’t know it’s his birthday, either.  In fact, I’d venture a guess that few of them are more than vaguely aware of his presence except when they share space in the swimming pool at the end of each school day.

I’ve spent the better part of the past few days mired in grief over the lack I perceive around this birthday: the lack of a party, the lack of friends, the lack of awareness of what a birthday even means —especially when each birthday has been so hard won.  In fact, just tonight, I sobbed on my husband’s chest (he’s such a great sport and loving spouse), lamenting the fact that our son’s birthday marks the end of my Pollyanna-ish notions that he would somehow, miraculously catch up.

Somewhere in between the weeping and wailing, the gnashing of my teeth and wringing of my hands, I had an epiphany.  I confess, it was fueled in large part by an email from an amazingly generous woman whom I’ve never met.  She gave me a gift —a very generous and very tangible gift— to share with my son as a way of thanking me for sharing our story and for openly sharing my love for my son.  A gift! For sharing the greatest joy of my life —something I do every day for free!  Her generosity and kind, supportive words helped me to turn my grief inside out; she helped me to recognize that, in honoring the gifts my son gives me every day, I, too, bestow gifts upon him.

For, what greater gift could I give my son than the deep and unfailing love I have for him, the unflagging belief I have in the possibilities which lay within him and before him?  I give him those every day through my words, my actions and my beliefs.  Sometimes they are gift-wrapped in hugs and kisses; sometimes they are actually wrapped in brightly colored paper. 

I try my hardest to let my son know and feel just how special, how precious he is to me each and every day —not just on the anniversary of his birth. 

Sometimes, there’s even cake.

 * * * * * * * * * * * * * * * * * * * *

Niksmom (aka Beth) writes about life with her son, Nik, and husband, Niksdad, at Maternal Instincts: Flying by the seat of my pants. 

“When we let go of hope fear wins. — Niksmom”

3AM

3AM.
 
I'm up because my heart is hurting. My daughter wasn't invited to the birthday party of a girl she thinks of as a good friend. Two separate parents mentioned it to me, assuming Riley was at the party, along with their children.  
 
The questions go through my mind. Did Riley say or do something to offend this girl? Is the mother upset we have not had her daughter over to play in months? Oh God. I have not had a Circle of Friends meeting in such a long time. Was the party centered around an activity which was out of Riley's reach? Swimming? Skating? Shouldn't she have at least run it by me? Does the girl just not like Riley anymore?
 
We see this mother/daughter duo twice a week at an after school program, which the mother and I coach together. I thought things were good between us. Between the girls.
 
It took Riley a really long time to have any friends at all. And her friendships are different than those of typical kids. She is happy to just be included. To say she has friends. Her friendships don't have the intimacy mine did at her age. She likes to be in her friends' presence, but she's not going to be the one to carry the conversation. It isn't the easy, back and forth flow I had/have with my friends. Did this little girl tire of that? Did she ever really think of Riley as a friend,or was her mom forcing things. Did I force things? 
 
Riley, painfully aware of her differences, will be devastated if she finds out she wasn't invited. I can already hear the voices of people who don't understand,  minimizing things, "Oh, that's something that happens to all kids." But it's more than that. I know my kid. She'll think it is because she has autism, and she'll hate herself for it.   
 
Tossing and turning I've had my limit. I come downstairs and sit in the dark living room. I try to meditate. Small glimpses of tranquility tease me and then back on the train I go, taking it all the way to my sweet girl, never being able to connect with anyone...living a sad, lonely existence, never holding a job, having a relationship, possibly homeless, possibly committing suicide.
 
What am I not doing that I should be doing to help her....? 
 
"Stand in a different place," I hear author Nancy Slonim Aronie say in my mind.
 
A woman I met at a writing conference told me about her. Aronie wrote a book called Writing From the Heart. Her "Stand in a Different Place" video rocked my world. 
 

So. 2PM: Riley wasn't at the party. She wasn't invited. But look! She was joyously working on a graphic novel she's creating. She was in her bliss, drawing her little heart out, completely absorbed.
 
4PM:  She was playing with her brother. An outsider listening in would be hard pressed to know she has Asperger's based on the ease and flow of their conversations. She is capable of deep connection, but must be very comfortable for it to happen. 
 
Move back a day: She's at the home school co-op. Riley is in a gaggle of kids, ramming around the gym at the end of the day. Huge smile on her face, literally skipping with joy. She is happy and free.  
 
Presently: She's safe and sound, asleep in her pink bedroom which she describes as "snazzy," with all its tweeny paraphernalia. Millions of glittery stars are being projected across the space by a machine she bought with her birthday money. She's warm. Her dog snores at the foot of her bed.
 
She is mostly joyful.
 
She is so very loved.
 
Right this minute, she is okay.
 
I breathe.
 
She is always okay. Even if she hurts.
 
I breathe again and my throat tightens. 
 
And so is her mom.  
 

~

Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect Parent, Age of Autism, Cool Cleveland and she has been published in SISIS Quarterly Newsletter, a professional journal for occupational therapists. She blogged for years at www.fullsoulahead.com.

 

Blogging for Awareness, Day 29

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 29:

You want to honor yourself.

So many of us know that we need to do a better job taking care of ourselves, but have no time, can’t find the time, don’t make the time. One of the values of our group is that parents need to honor themselves in order to do their best for their children. Join Hopeful Parents today, and honor the work that you do. Membership provides you the benefit of a monthly newsletter (starting in December), the opportunity to meet other members, participation in Working Advantage (a discount program for thousands of products and services), and satisfaction in knowing that you’re remembering to honor yourself. Please join today.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Adventure Guides

Last fall, I was invited on a dads and boys camping trip, and I almost didn’t go.  My mind took an inventory of all the possible disasters:  there won’t be any pasta (Graham’s obsession), the other boys will want to play with his trucks (he was very possessive of his trucks), lots of unstructured playtime with typical boys (variables too numerous to count), there will be hiking (Graham would tire after a hundred yards), and he probably won’t sleep (read: I won’t sleep).  Plus, rain and freezing temperatures were in the forecast, I own no camping gear, hadn’t put up a tent in 15 years and didn’t know any of the other dads or boys.

But, then, there was this:  my dad took me camping when I was a kid, and those trips are some of my fondest memories.  Nights in front of campfires, rising early and making pancakes on the Coleman stove, midnight snacks, snuggling in the sleeping bag, and best of all, quality time with dad.

Like any parent with a child with special needs, I wanted those kinds of “typical” experiences with Graham.  Just camping.  No aide necessary, no therapy, no assessment to be done…just hang time for the two of us, smores and fun. 

I was on the fence until the night before. I had acquired the gear, pitched in for the food, and was pretty sure I’d be a last minute cancel.  And what tipped me toward going was just some good old-fashioned hope.  Fingers crossed, hold my breath, and let’s go.

And I’m so glad I did.

I thought Graham would like it, but I wasn’t prepared for the momentousness of every aspect of the experience for him.  Every little thing was like the most amazing happening. 

I could almost hear his thoughts throughout the experience:

The tent!!  What a cool thing, like a little fort for just dad and me! Getting to “build it”, and arrange our beds inside; snuggling with my blankie, my special snack and dad…  Can we just move here?

Midnight snacks?  (technically 8:30).  What a concept!  Could there be such a benevolent and wonderful thing in life as a yummy, slightly unhealthy snack past bedtime?  I get to stay up and eat a treat?  What rapture!

And the campfire!  Real fire?  That thing mommy had always warned me about, that strange and alluring thing!  I get to help build it?  I get to make it bigger? I get to hold a stick in it?  I get to put a sugary marsh-mellow in it and then eat it?  Are you kidding me?  Six-year-old Heaven!

And mom, love you to death, but would you let me get this filthy, eat this many smores, and stay up this late? 

Since that weekend camping trip, we’ve done two more camping trips with the same group of dads and boys.  Graham looks forward to the next one more than he looks forward to his birthday.  He talks about them, reminisces about funny camping moments, reenacts favorite super-soaker battle scenes, and counts the days til the next trip.  And he blossoms there.  Freed from the structure of his normal days, he’s allowed to run free with the other boys, and is forced to “work it out” when he doesn’t get what he wants.  Off playing, he forgets about pasta, and realizes the benefits of sharing his trucks (he becomes the center of attention!). It’s like he sheds a layer of old skin. 

As I think back to my hesitation, I can see how it was representative of a lot tendencies in me:  the desire to overprotect, to clear all the obstacles out of his way, to micro-manage his environment, to choreograph social interactions. 

And while I still have some of those tendencies, and come by them honestly, I realize that one of the best things I can do for him is take him camping, three times a year, just dads and boys, and let him spread his wings.

A House with No Mirrors

On November 3, the Discovery Health Channel featured a series of special programming on families living with children diagnosed with a variety of devastating illnesses.

Thank you Discovery Channel!

The first special was about a family raising a daughter with Primordial Dwarfism, a severe and potentially life threatening form of Dwarfism. This family struggles to cope with the possibility of losing their daughter by age two.

The second special featured several families of children diagnosed with Tourettes Syndrome, very similar in its scope to ADHD with its uncontrollable impulses, motor tics and impulsivity. These families struggle to try to maintain any sense of peace, happiness and well-being for their children.

And of course, finally the series on William Weaver, the 14-year-old boy diagnosed with Prader Willi Syndrome, a disease causing an insatiable and deadly appetite, this family struggles to keep their son from eating to death. My 8-year-old son, Nicholas has also been diagnosed with PWS.

For three hours I was given an opportunity to see into the lives of many families whom I have never met. For three hours, I cried. And yet, as I watched these families, and particularly these mothers, I saw something in their faces that was very familiar to me. It was almost as if I knew them somehow.

Each of these mothers possessed a certain calmness that comes from living a life filled with sudden child emergencies and life threatening situations. I saw in them, confidence.

I saw in these mothers, a sense of urgency and frustration that comes from fighting many battles with many individuals, in an effort to demand others see their children as the worthy individuals they are and not the horrific diagnosis they possess. I saw in them, courage.

I saw in their faces a deep and unconditional love for their misunderstood and ostracized children. I saw in them, love.

In their faces, I saw myself.

Many friends and family members surround me in my life. But as I watched these shows, what I realized is...of all the faces I see each day, I do not see any similar to mine.

There is no reflection from others that they truly understand the difficult life I lead. There is no comprehension in their eyes of knowing what living a life like mine is all about. And although I do receive a great deal of compassion and support from these individuals, there is no complete understanding.

It is like living in a house with no mirrors.

I live in a world where I cannot see myself. There is no reflection of who I am. It is almost as if I do not exist.

I bury my needs and myself so I may have the strength to care for my children. There is little time left for myself after busy days filled with doctor's appointments and meetings with specialists. There is little time left to just be me. There is little time left to see who I am and what I look like.

Watching these television specials allowed me for the first time in many years, to see myself. For in these mothers, I saw an inner strength. That same familiar inner strength that has given me the courage to endure a lifetime of temper tantrums, locked cabinets and scratched skin.

For the first time in 11 years, I was given a mirror. I could finally see myself.

After the episode was over, my husband and I wiped the tears from our eyes and discussed our thoughts about the show. What was interesting to me was that although my attention was focused on William's mother, Faith, my husband's was focused entirely on his father, William, Sr.

It was almost as if I was searching for my reflection and my husband was searching for his.

I was so touched by the story of William Weaver and his family. The deep and unconditional love these parents have for their child was presented so beautifully. William's loving spirit and deep love he feels for his parents was also captured so sincerely. He is a beautiful soul. I could not stop crying.

For those of you who missed the show. The Learning Channel (TLC) will be airing "My Deadly Appetite" once again on December 1 at 8 pm.

I am very thankful to William and his family for showing us such an honest and yet loving portrayal of the hardships they have faced. I am thankful to them for sharing this deeply personal time in their lives with all of us, so that perhaps others can understand the severity of issues facing families raising children diagnosed with this devastating disease.

I am thankful to the Weavers for helping to raise awareness of Prader Willi Syndrome so perhaps one day we will find a cure.

Thank you to the Weaver family from the bottom of my heart.

Thank you especially to William. You are my hero.

 

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<

I have interviewed William about his continued success losing weight and managing his emotions. Since May, he has lost a total of 94 lbs! In the post, he shares his thoughts about his stay at the Children's Institute in Pittsburgh and how he felt coming home. He talks about how he feels after losing weight and continuing to do so at home.

 I have posted William's story on my blog. Please read it at: www.onalifelessperfect.blogspot.com

Here, you may leave a message for William and his family. All messages will be forward to the Weaver family.

Please let William know what a wonderful job he did sharing his inspiring story and raising awareness of Prader Willi Syndrome.

This young man's story has allowed our family to be hopeful for the future. If you too are inspired, please let him know by leaving him a message. Many thanks to everyone and Happy Holidays to all.  

Blogging for Awareness, Day 28

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 28:

You want to change the schools.

Could you imagine what kinds of sweeping and positive changes could be accomplished to help our kids in school if we simply came together to do this, instead of individualized and one-by-one. We can all agree, I think, that each of our kids presents a unique set of circumstances…but I think we can also all agree that there are some common standards that all schools should uphold for our children with disabilities. Our membership could create a set of standards for schools to follow, and together, we could champion our cause within our local, state and federal governments. What a difference we could make! We can’t do it alone, individualized, and isolated as is the case with our IEPs today. Please join Hopeful Parents, and let’s work together on a school initiative.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Coming Together Again

Oscar turned ten last week. Ten.  A decade. 

To me that day marked far more than his remarkable growth to the earnest, slender, and well-liked boy that he is. It also marked the 10^th anniversary of the scariest day of my life and my survival of this first decade of raising a child with a disability.

I broke down in tears several times during the day, starting with Oscar’s birthday honoring circle held in his 4^th grade classroom. Sitting cross-legged on the rug with his teacher, aide and 16 peers, I listened as each offered an appreciation of Oscar.  He’s a friend of animals. He plays with me when I ask. He’s always happy. He’s a hardworking student. He eats lunch and talks with me. He’s teaching me to play basketball.

More than their sweet words I heard the sincerity in their voices. No eyes rolled, and no secret smiles were exchanged.

When it was my turn to honor Oscar, my eyes filled, my nose stung and my voice caught in my throat.  I looked to Oscar who said, “It’s ok Mom”, and so I managed to speak, somehow letting only a few tears fall. I told Oscar I was proud of him, and then I honored his classmates for being such supportive and caring friends all these years.  Oscar sat smiling in the special birthday chair nodding in agreement.  Those tears turned to sobs as I left the classroom and could finally let the emotions roll unchecked.

In our PWS support group meeting last weekend I shared more than I have in a long time.  Encouraged by our facilitator, I talked about how I celebrate Oscar on his birthday but I do not celebrate the day of his birth. I talked about how I wanted to mark the passing of this decade with something significant for me, like a hike to the top of a local peak, because so much of my life has been defined by being the mom of a kid with PWS that I don’t know who I am anymore. And I talked about how lonely I feel sometimes.

As I sat in that meeting, tears streaming down my face, I realized that Oscar’s 10^th birthday is not only significant because I survived, but also because I am painfully aware that this birthday marks the dawn of a new decade of challenges. I wrote on my blog that I am full of hope, but I realize that I am also undeniably afraid.

Ten years ago I feared Oscar the infant who might one day steal food from garbage cans or have tantrums so disruptive we would never go on vacation or ever again attend a holiday celebration because of all of the food challenges.  And now, ten years later I am starting over, fearing the next decade’s challenges.  I am deeply worried about finding educational placements for middle school and high school and managing the challenging teenage behavior associated with PWS.  I am worried about bolstering Oscar’s self esteem as he begins to notice the widening gap between himself and his typical peers.  I am worried about finding engaging work and appropriate housing options so that he can be happy and fulfilled in his adult life without feeling deprived of opportunity.  I am worried too about keeping Oscar safe in this food-filled world.

But most of all, I am worried that I will need to do much of this alone.  I do have a supportive and involved husband, but he has a demanding career that provides for our family, and so by necessity this task of supporting Oscar has largely become my own unpaid, unchosen, career.

It’s all a bit overwhelming and so on Oscar’s birthday I really needed to stop and appreciate the view, as one might, for example, when climbing a steep mountain. I know it’s terribly cliché, but I really am looking ahead a few years and seeing lots of precipitous trails, some potential for slipping, some places where we might need to tie-in, use a belay, and really stretch for that next hold.  Stopping here at the decade mark I am looking back down the path we’ve hiked and I see how far we’ve come. I’m proud of where we are. I’m proud of what I’ve learned and who Oscar has become.  I needed this break in the climb -- to mark this birthday -- so I can remember this moment when things are pretty good, when Oscar is happy and learning and thriving. When the school he attends anticipates, rather than fights, his needs. When his flexibility is actually increasing and we’re able to manage his food security without too much sacrifice for the rest of the family.  I needed this day to take stock and collect resources before getting back on the trail.

When Oscar was born I yearned specifically for connections with other moms who had kids with PWS. I wanted to talk to moms who, like me, were so awash in grief over this devastating disorder that the chant “Prader-Willi, Prader-Willi” haunted them every time they peered into their sweet baby’s eyes. I wanted to talk to those who lay awake at night puzzling over the minute details of their kids’ development.  I wanted to discuss alternative and mainstream therapies, diets, and how to explain to relatives and teachers that even just one unplanned cookie or carrot is not ok.  It took me a few months but I found those parents in our local support group and in an assortment of online sharing lists.

And then as time passed I found support in other places too. Family, typical friends and parents of kids with various disabilities have all become part of my expanded and treasured support network.  We’ve woven in and out of the PWS community over the years, staying connected but participating a little less in our support group, and fundraising events.  Life with three children is complex and, at times, we have had to favor activities centered on the other children. 

Facing this new decade I feel the loneliness and fear of those initial days after Oscar’s birth creeping back in and coincidentally my PWS community has appeared to shore me up again.  Oscar’s birthday fell exactly between our annual state PWS conference and our local support group meeting.  At the conference I dined with close friends the night before and then buzzed around the next day at the conference reconnecting with families I hadn’t seen in a while.  That night I enjoyed a fabulous dinner laughing and sharing anecdotes with the conference speakers -- my two favorite PWS experts -- and the leaders of our state organization.  Two weeks later at our support group meeting the nods of understanding from a room full of both new members and treasured friends strengthened me.  And then another old friend whose daughter with PWS is just three weeks younger than Oscar came to town and surprised me with a visit this week. We shared pizza and wine while our kids played foosball and hide and seek.  I’m having coffee with another mom on Sunday and next week I’ll enjoy the rare treat of lunch with another two of my dear friends whose kids also happen to have PWS.  

None of these events is unusual but the collection and timing is a welcomed coincidence.  In the space of three weeks I will have somehow connected with almost everyone I know in my state that has a kid with PWS.  My PWS community seems to be reminding me, just when I need it most, that I really am not alone after all.

*****

Mary blogs over at Finding Joy in Simple Things about life with Oscar and his two siblings, Abe and Ruby.

 

Blogging for Awareness, Day 27

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 27:

You want to create awareness around caregiving.

Let’s face it: you’ve felt someone staring at you while you’ve cared for your child. You’ve wondered what they’re thinking – are they curious or are they judging. Maybe someone’s given you unsolicited advice, even unsolicited and flat-out wrong advice. People need to be more understanding, more sensitive. But it’s not going to happen through the kindness of their hearts. They need to be more informed, better educated. Let’s ban together and spread the word about caregiving for our children. No minority has ever changed society without first coming together. Please join us on this quest.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Just For Today

Just for today, I'd like to not feel I like have to fight for my kid

or that I have to convince people that he DOES belong.

Just for today, I'd like to not have a lump in my throat

or a huge knot in my stomach.

Just for today, I'd like there to be no phonecalls or emails

or no need to explain to people the same things over and over and over.

Just for today, I'd like to not have to champion my son

or to feel that if I don't speak up, my son and others like him, 

will be bullied and hurt by the people who are supposed to help them.

Just for today I'd like the world not to be a scary

and potentially dangerous place for my son.

Just for today I wish people could just do the right thing

because it's the right thing to do.

 

mom2spiritedboys is the mother of two very spirited boys and is now embracing extreme parenting in the trenches after trying to fight it for many years. She is married to a wonderful man who works hard to ignore the state of disrepair of their home and made her the happiest woman on earth when he took over laundry duty in its entirety in September 2009. You can read more from her at her personal blog Spirited Blessings

 

someone new

We're about to welcome a new family member.

This one has been 11 months in the making, and felt simultaneously endless and like it went by in the blink of an eye.

Clearly, I am not pregnant, as I happily do not suffer the gestational period of horses.

When we got our diagnosis, one of the first places we turned to was Autism Calgary, and their executive director talked to us about service dogs. How life changing it had been for his family. I had seen information about Autism Service Dogs online but wasn't completely sure about their benefits, until we had a chance to talk to someone with firsthand knowledge. Then I was sold. Convinced. Noel needed one. Right. Now.

Of course, very little in life comes to us instantly, so we first applied with an agency here in Alberta which places dogs, free of charge. But the wait list was 2 years long. I couldn't see myself waiting two years, and more importantly, I felt that Noel couldn't wait two years, either. So we continued to search for an alternative, and found it, with 4 Paws for Ability. In January of this year, our application was accepted and we started what at first seemed like an insurmountable task: raising the money required to start the training process for a dog of our own.

The amazing thing? Our community, our family and friends, neighbours, local businesses and Noel's school rallied up around us, and by July we were finished our fundraising. At first I was worried, about putting my family out there, so public, so exposed, telling Noel's story and asking for donations, but looking back, I think it helped me come to terms with many things that I was still struggling with in regards to our diagnosis. Telling our world that Noel has Asperger's, and having those people respond with open hearts, helped me to see things that sometimes I was missing.

I'm so excited to meet Noel's new partner. I'm excited to watch the bond between them grow, to see his independence increase. I am eager for him to have a friend he can always confide in, a friend who can track him down if he disappears in a crowd, who can stop him before he darts out into the street, who can help him find the centre when he feels it slipping away from him. Selfishly, I'm eager for an outward, visual clue that Noel's needs are different than the needs of other children, and so his meltdown is not just him being a brat.

I know the adjustment period won't be easy, but I'm so ready. I know that adding a dog is similar to adding another child, and I can honestly say I'm not looking forward to dealing with the poop of one more living thing. But even if this dog does nothing for Noel but make him smile more, it will be worth it. And I have a feeling she'll do a lot more good than that.

***

Stephanie O is too busy to think, let alone blog, but she somtimes does that here

 

 

 

 

Blogging for Awareness, Day 26

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 26:

We make shopping on Black Friday a piece of cake.

It’s true – no reason to hit the road, brave the crowds, stand in line, and snail through the mall’s parking lot today. When you join Hopeful Parents, you’ll have access to our discount program offered through Working Advantage. Purchase your holiday gifts through them – and save money at the same time! Please join Hopeful Parents today.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Wearing My Gratefulness Badge

I have to be honest with you. I'm not a fan of telling time and time again that I'm grateful. Thanksgiving makes me look inward to reflect on what I am thankful and grateful for (and I'm thankful). In some ways I even resent telling it time and time again.

Sometimes I think people expect me to always wear my gratefulness like a badge. My two children were lucky enough to each receive kidneys donated by two wonderful friends 2 1/2 years apart by skilled surgeons after my son was kept alive by a skill dialysis team.

I'm grateful, I really am. How could I not be?

I resent it I think because I feel I show I'm grateful twice daily as I prepare the some 20 medications for my two kids. I know the meds keep their transplanted kidneys safe in their bodies and their mental health on the right track. I think I show that I'm grateful every time I burst into tears when a friend surprises me with dinner on a Tuesday for no reason, other than she loves me and wants to help. I think I show my gratefulness every time I do a great job on a project for which I'm proud. I am certain I show I am grateful for where we are by sharing what I've learned navigating the mental, education and health care systems with other parents. 

My children are alive even though I've cried with mothers who've lost their own babies to the same disease our children share. My children are here, they are here to enjoy Thanksgiving break and I'm grateful. I think about those other mothers whose children are not here with them and I feel shame for not always being grateful and for not always wearing that Gratefulness Badge.

I am not especially grateful for the hard road we are on as a result of this never seen before syndrome. I have to say, I don't count my blessings for my kids' pain and suffering or their uncertain futures including wondering if I will outlive them. I'm not feeling grateful about the prospect of my son needing more intervention from the mental health community just to survive puberty. No. Not grateful.

But I do try. I like that Thanksgiving slaps me in the face and makes me pay attention, makes me share being grateful publicly. It makes me claim what I am grateful for in spite of what I am not, even though they are almost always connected by circumstance.

I’m thankful…

1.      That our insurance only increased 15% and not the 23% like last year,

2.      For our friends and family who support us unconditionally,

3.      For health care professionals who are compassionate and smart,

4.      For friends I’ve met as a result of my kids with special needs,

5.      For doctors who hand out their email addresses freely,

6.      That some pharmacies really do offer customer service,

7.      For the Internet and the chance to meet more of my people,

8.      For health care professionals that don’t chew/crack gum,

9.      For a psychiatrist who values my input as his patient’s mother,

10.    For a school that always puts my kids’ needs first,

11.    For kids who like breakfast for dinner,

12.    For a family that doesn’t mind eating on paper plates,

13.    For people who don’t judge us by the behavior of our kids,

14.    For other parents who encourage their children to berfiend mine,

15.    That modified homework actually exists,

16.    My church family sticks by me even though I'm not there very often,

17.    That I get to do tangible work towards research of one of my kids’ diseases,

18.    For the alone time I get because of my husband and friends,

19.    For a job I love and can do around my kids' demanding needs,

20.    My husband has a sense of humor, a sense of romance and common sense.

Feel free to add to my Special Needs Parents’ Thankful List. I'm grateful you're here (really, I am) and I hope that you have a wonderful Thanksgiving, whether you wear your gratefulness like a badge or hide it like me.

Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special Needs.com.



Blogging for Awareness, Day 25

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 25:

We’re thankful for you.

Hopeful Parents has grown tremendously since we started less than two years ago…because of your support. Please continue supporting us by becoming a member. Starting in December, our members will receive a monthly newsletter. You’ll also have a chance to meet other parents in your area, advocate for your children and families, create awareness around caregiving and special needs, and participate in a discount program designed for our members. I hope you’ll join today.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

What if my kid doesn't want to read road signs or decorate cakes?

This is a piece I wrote a few years ago when I first visited my son's high school. My fears about the school have been realized and I wrote about this at Dark clouds clearing earlier this week on the BLOOM blog at Holland Bloorview Kids Rehabilitation Hospital.

What if my kid doesn't want to read road signs or decorate cakes?

When I was in Grade 9, I took a test to see if I could get a scholarship to the Toronto French School. It was an exclusive private school that prepared students to write exams that would get them into the most prestigious universities in the world.

One of the questions on the exam was about the value of a university education – whether the goal was to get a job or if there was something intrinsically worthwhile about higher education.

I wrote an essay about the value of education in and of itself – of higher learning for the sake of bettering oneself – entirely separate from getting a job.

I got the scholarship.

Today I am sitting in an old, run-down school listening to a guidance counsellor talk about how the goal of my son's high school education will be to get a job.

There will be no reading of To Kill a Mockingbird in this school. We'll be lucky if they learn to read road signs.

Everything is to be experiential learning – no physics or geometry or literature. Math will be taught by counting bus tickets.

My son can stay here until he's 21. But he won't earn a high-school degree. He's not smart enough.

The student population is made up of two groups: those who score in the 5th percentile for intelligence, and those who fall below the first percentile. She makes a point of explaining that this means that if you take 100 kids, ours are at the bottom of the heap.

The program is focused on life-skills, the teacher says. They learn how to prepare food, make a doctor's appointment and ride the bus. Their homework is 30 minutes of reading before bed. Most read at a Grade 1 or 2 level. One of their innovations is a cake-decorating course.

What if my kid doesn't want to read road signs or decorate cakes?

The library in the school is remarkably bare. School and books. Don't they go together?

They have a café where the kids learn to prepare food that everyone eats for lunch. There are computers, but they seem few and far between.

The staff are very nice and obviously dedicated to their work.

A teenager shows us where they eat lunch and tells us that they're not allowed outside (unless they have permission from their parents).

Unlike other high schools, there are no kids hanging around in cliques all over the property. The smokers, the jocks, the nerds. The building is tucked in from the street and feels like a place that is both protective of its students and forgotten by the world.

I begin to feel queasy, picturing my son at a segregated school where any hope of him furthering his academic abilities will be kissed goodbye. And I'm afraid, wondering how he'll navigate this world where everyone is twice his size and his dwarfism will be even more pronounced? What if he's bullied? What if no one understands him? What if he can't tell me what happens?

"I really don't have many options for you," the special ed person says before we leave.

“I don't know what our decision will be,” I tell him, surprised to hear my voice crack. I hope he doesn't notice that if I'm not careful, I'll cry.

D'Arcy and I share a joke. It's a choice between this school for kids with mild-intellectual disability and the class for students with developmental disabilities we visited a year ago. It was in a dark room with no windows in the basement, accessed through the caretaker's room.

Sometimes black humour is our only reprieve.

As I drive back to work, panic and anger set in. My chest tightens, my eyes burn and my feet get pins and needles. Why must my son and others like him be hidden from the world?

"Don't show your ignorance" pops into my mind, a British saying my father was fond of when I was a child.

"What did you think?" my daughter asks when I return home.

"He might go there," is all I can muster, trying to convey a complete lack of concern.

Blogging for Awareness, Day 24

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 24:

You feel good when you’re here.

If you feel a sense of connection to our writers and the people who comment, then I hope you’ll consider joining. Let’s built this community!

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

What I'm Thankful For...

In a couple of days we will celebrate one of the most  basic of American holidays that often gets overshadowed by the great homage to Black Friday and the holiday shopping season—Thanksgiving.  This year is going to be a little different in our house since this will be the first year we are not spending the actual day with anyone but our immediate family.  This was not really a “choice” per se; it was more of a compromise.  My family just doesn’t get it and I am tired of trying to make it work. 

Actually, this all started under the guise of them not wanting me to bring our dog to my sister’s model home.  In actuality, the decision also had a lot to do with my youngest son whether they will be honest or not.  Last year, my sister got very upset at my son for dislodging a button from an overstuffed giant ottoman straight from some magazine picture somewhere.  She had been stressed all day and he got to bear the brunt of it for being himself in a house that is more a showroom than a home.  There are too many glass and fragile “don’t touch that” pieces d’art for him to resist. 

However, it is better to blame the dog who jumped up on her other stylish piece of furniture in his effort to greet everyone.  He was a shelter dog we had adopted a month before last Thanksgiving.  He really had never known a home is the estimate of the shelter workers.  Oh yes, and he is a candidate for canine ADHD.  Actually, that is real and some breeds, like him, are especially prone.  They think that is why he ended up at the shelter.  (Go figure, my dog has needs too!)

So, he we are with my family of four planning on spending the actual day of Thanksgiving together…just us…and the hyper dog and two cats as well.  In years past, that would have upset me to no end.  This year, not so much.  Why?  I think I have finally been able to embrace a quote I read years and years ago.  I looked it up on the internet just to make sure I could give credit where credit is due.  I could remember the words, not the person who quoted them.  So, Ring Lardner is responsible, at least partially, for me accepting this turn of events.  His quote?  “The family you come from isn’t as important as the family you’re going to have.”  Quite fitting for our circumstances.  Besides, this way I get to make sure there are actual vegetables and things I enjoy instead of a lot of  starch at the table.  And my children will be able to celebrate as they see fit without the critique on my parenting skills for letting my oldest eat chicken nuggets and the youngest to eat anything as long as he eats.  Who cares if Thanksgiving doesn’t mean turkey as long as we are together?  Right?  I’m thankful that I can say that this year.

Sure, it does bother me a bit that my kids won’t have the traditional family gathering that day.  However, there are many people who aren’t with family on Thanksgiving for one reason or another.  We aren’t the only ones.  My oldest knows the real reason I believe; that’s unfortunate.  The youngest appears blissfully ignorant of the ramifications.  Still, he knows that he is all but ignored in comparison to his younger cousin who everyone else views as perfect.  My kids?  Not so much.

Oh, family will make an appearance at my house the day after.  How fortunate for us.  It gives a whole new meaner to “Black Friday.”  That way my parents and sister will be able to bestow on my children the grace of their presence for a time.  Of course, it will still be another gathering where they really don’t get my kids.  At least I will be able to let my children maintain a routine and have escape options for them when it gets to be too much.  They will be on their home turf, and for that I’m grateful.

I’m also grateful for the people in my life who do understand and know why this is such a bittersweet thing occurring.  I’m thankful for those people who have let me vent about this—much like you are by reading this—so I can get the cornucopia of emotions out.  I’m thankful that this “compromise” means my kids can still be themselves.

I’m thankful for a lot of other things this holiday.  I’m thankful for the parents who came before us and fought for the rights of kids with special needs.  I’m thankful for the parents who faced educators, lawyers, government entities, doctors, established institutions and refused to back down.  I’m glad that they changed laws and perceptions, standards and expectations.  To them, my gratitude is sincere and profound.  I’m thankful for those of us who keep fighting for our kids regardless of the location or reason.  I’m thankful for the people who fought and died for us to have that freedom in our country.  I’m thankful for the people who taught me how to channel my roar into an articulate case and how to effectively advocate for my children, and others.  I’m thankful that I have come to understand, appreciate, and embody Ring Lardner’s quote in my own way.  I’m thankful to know that I’m not alone in this issue and that typing away at my keyboard is one more way to gain strength.

I wish all of you a Happy Thanksgiving…however you choose to observe it.  I’m thankful I have found a way to spend mine with less stress and more focus on why I need to appreciate what I have, not what others think I should.  

Blogging for Awareness, Day 23

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 23:

Your dues get put to good use.

Membership dues are the “bread and butter” of any non-profit organization, and Hopeful Parents is no different. Dues allow us to continue publishing our content online, every day. Please help keep Hopeful Parents up and running by joining today!

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Change a Life - Change the World

From a very young age, I always wanted to make a difference – to know that my time spent on this earth was worth something. As I have gotten older, those thoughts refined themselves into wanting to leave the world a better place once I am gone. And through the adoption of some very special children, I believe I am well on my way to achieving that goal.

November is National Adoption Month. Thousands and thousands of children are waiting for families to call their own. These children often have been through hell. They have seen and experienced things that no one, and especially not a child, should see and experience. Parenting them will not always be an easy job. In fact, sometimes it will seem downright impossible. But it’s not.

When I first decided to adopt as a single parent, most of my friends and family told me I was crazy and shouldn’t even consider parenting another child, especially a child with significant special needs. In fact, many of my friends have felt that way when I decided to adopt two more times, and when I told them just this year, that I am adopting another child.

Maybe I am crazy, but I am not wrong. Adopting and parenting children with special needs, both medical and emotional needs, has been one of the most rewarding aspects of my life.

I know beyond a shadow of a doubt that I am making the lives of four very special children better than they would have ever been. More importantly, my life has been enriched in a way that words just can’t express.

What about you? Would you consider opening your heart to a child that needs a family? I promise that if you do and it gets really tough, I will be here to help you….

A Year in the Life

It is with some disbelief that I write commemorating the anniversary of the death of my husband – a wonderful father, a loving husband, and an incredibly talented writer, Jeffrey Felshman.  The list would go on and on because he meant many things to so many people, but I digress from the point of this blog.

Getting back to the notion that Jeff was an incredible father, our son, Gabriel, lost his primary care-giver at a stage where he was just emerging into so many skills not previously acquired.  It is with much relief that I can relate that Gabriel has continued with amazing progress.  His use of language improves daily, he is toilet trained, he attends school with enormous enthusiasm and he is enjoyed by his peers, all of whom have autism.  Although Gabriel will not break through to socializing with typically developing children his age in the near future, he has just been invited to his first birthday party with a classmate, David.

Gabriel has learned to type on Jeffrey’s old Mac iBook and keeps a journal as part of his speech therapy.  In the journal, Gabriel has written about David and another boy in his class, Colin.  Additionally, he has also related a love for French fries borne out of his other favorite school activity – lunch.    Previous teachers have been mentioned, his excitement for his 7^th birthday and his anxiety over a business trip I made are all included.  I have a view into my son’s world not previously known.  And it’s a fairly happy world I’m relieved to say.

It’s true that I’ve gone back to work after almost 9 months of strictly consulting and working local jobs.  You may or may not realize, but I write some of the television you watch.  And it’s an amazing distraction to write and produce programming.  It seemed like a huge accomplishment to get back to work.  Very thankfully, I have the love of two women who babysit Gabe in the style to which he had become accustomed with his parents.

My other two sons are both in college.  You see, Jeffrey was a widower when I met him – his wife and the mother of Samson and Marty died of breast cancer just over a year before.  We met on a blind date and engaged for marriage four months later.  So as naïve as I was at the time, I fell in love with all three, becoming an instant mother of two.  It’s been a crazy life of constant transitions for my older sons, but I can see they’re taking it in their stride.  Thank heavens we’re all bonded together, in good times and bad.

So we four have all made it a year without Jeffrey.  It’s been an incredible time for mental gymnastics.  There are only hours where I don’t miss him.  It’s still a day at a time getting through.  My mind remains focused on kids and work until I can no longer help it…and then I end up in the room Jeffrey died in, our bedroom.  And I feel the ghosts of our past and pray for strength to create a legacy that will be suitable.

Everyday, in my mind, we speak.  Everyday, I try to see Jeffrey in the thicket of our magnolia tree, in the cookie aisle of the grocery store, in a sun that unexpectedly glimmers.  I can only hope he’s off in a better place, cavorting with misbehaving angles and influencing the world in some mystical way – to a certain degree, his desires in life.

Thankfully, over the past few months, I’ve managed to start sleeping through the night.  Every morning I awaken with something to do, something to look after, another drama to solve.  And I relish that.  And I relish living.  So onward a path that leads over a horizon I can’t see beyond – hopeful there are no potholes that fall into oblivion.  Life can change that quickly, for better or worse.

Blogging for Awareness, Day 22

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 22:

You love yourself.

It’s so easy to forget about ourselves while raising our children. Hopeful Parents is a place you can go to affirm that you’re doing the right thing for your kids – and that you need to take care of yourself. Remember to love yourself, too!

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Joy, Seasoned with Anger

My whole family showed up for Carter's holiday performance at school last Friday. We like to arrive en masse and scare people with our numbers and our ability to make noise.

Not really, but no matter our intentions we're the loudest people wherever we go.

In any case, we arrived at noon and the dozen kids in Carter's class were nervous and excited for their performance. They took the stage on wobbly legs. Some kids said their lines so fast, we couldn't understand a single word. Some of the kids whispered their lines, and the songs...how in the world should I describe the songs? Out of tune, shrill, and delivered at top volume.

It was fabulous.

I've seen Les Miserables, the actual Broadway show, and it paled in comparison to the rich and wonderful brilliance of Carter and his classmates on that stage. It was one of those shining events, created of the very stuff that makes life wonderful.

I went home full of joy. Carter's school meets his needs in every way that matters. The twelve children in his class are in grades 1 through 5; all of them have mental and/or emotional issues. The middle and high school classes have similar numbers of students. The elementary school group has two classrooms, two teachers, and one teachers' assistant. Carter also works one-on-one with a reading specialist for 30 minutes a day. Carter works hard at school, and while he's working nowhere near his age-peers at the public school, he's learning.

My son is happy and he's learning. It makes me tear up, looking at those words on my computer screen and knowing that they're true. Equally wonderful is the knowledge that, if (when) Carter becomes acutely symptomatic again, his teachers will help him. No more working at cross-purposes with the people who are charged with educating my child. No more fighting and struggling; at Carter's school, we have found genuine compassion and a willingness to help.

My joy is always tinged with anger. Every child at Carter's school was once a student in a public school. They all had IEPs or 504s. Their parents fought the same fight we fought and, discouraged, turned to our financial resources (or those of our families) for a solution. All of Carter's classmates come from families with access to enough money to pay private school tuition.

We're not families who hope that, by making a large financial investment in our children's education, our kids will go to Ivy League schools instead of public universities. We're not aiming to create academic and professional brilliance in our children's futures.

No, we want our children to achieve whatever level of academic success is possible for them. For Carter, at least, that's very unlikely to include college. I don't care about that. I don't care about anything except helping Carter manage his illness and his various issues in such a way that he can create a satisfying, productive life for himself, whatever that means.

And that anger? It is always about this: the hundreds of other children in Albuquerque whose families cannot provide this extraordinary education for them. Our public schools are succeeding in some ways and failing in many more, but above all, they are failing our children with emotional issues.

Carter does not deserve this more than other children. He was fortunate enough to be born into a family that has the ability and the willingness to help him in this way, but he is not more worthy.

I enjoyed Carter's performance right down to my toenails. I bank my feelings on days like that; I need something to draw on in those long, dark days when Carter's illness fills the world from horizon to horizon.

I would enjoy a day like that even more if I knew that every mother of a little boy or girl with problems like Carter's got the same experience.

Carter will go to school tomorrow, and in spite of his severe emotional and mental issues, he will feel as safe, happy, and confident as it is possible for him to feel. I want that for every child.

Blogging for Awareness, Day 21

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 21:

You want to do something about health care.

If you want to be involved in grassroots efforts to help improve health care for our children and families, the I hope you’ll join Hopeful Parents. One of our initiatives is government advocacy, and we need to grow our numbers in order to do that. Please join Hopeful Parents today.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

One Thousand Cranes

I'm going to be a bit lazy today for my monthly post here at Hopeful Parents and tell you that yesterday I wrote my 1,000th post on my personal blog, a moon worn as if it had been a shell. While doodling around the internet, trying to find an image of the number one thousand, I found an entry about one thousand origami cranes, and being the sort of parent, the sort of hopeful parent, that sees signs and symbols and messages in just about everything, I crafted the whole post around that.

An ancient Japanese legend says that if you fold one thousand origami cranes, your wish will come true. One Thousand Cranes, or the beautiful 千羽鶴 Senbazuru, are tied together with string. The crane, along with the tortoise and the dragon, is considered a mystical creature and is said to live for one thousand years. The Thousand Cranes has also become a symbol of world peace and are left outside to be weathered, dissolving and becoming worn and tattered. It is then that the wish is released. 

About two and a half years ago, I began this blog, thinking that it would be a place to post poetry (not my own!) and write a bit about my life with Sophie and my two sons, Henry and Oliver. I was veering more toward the poetry because my life and my writing had been (and continues to be), literally, consumed by Sophie's seizures and accompanied disabilities. The blog would be an outlet, I thought, a place where I could be dark and funny and a tiny bit artistic.

Little did I realize that I would one day have written one thousand posts and met, along the way, a myriad of writers, artists, comedians and parents of all stripes and colors. And despite the occasional troll keeping me on my toes, the blog has been an incredible source of not only comfort and support but inspiration. I wonder what my life might have been like if I had had this blog fifteen years ago, when my daughter was diagnosed with infantile spasms, when I sat alone in a tiny bedroom, rocking my baby as she screamed for hours. Then again, what's the use in looking back? 

I've decided to ask everyone who reads this to construct an origami crane for my daughter Sophie. If you aren't handy with paper, you can do it in your mind. Those intricate folds can hold your own wishes if you'd like, because despite being weathered and perhaps more than just tattered, I can imagine us dissolving into something better. We hopeful parents,especially, are tied together, many thousands of us, hoping for wishes to come true.

 

Elizabeth will be folding cranes and wishing and hoping over at her blog, a moon worn as if it had been a shell. 

Blogging for Awareness, Day 20

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 20:

You’re frugal, yet you want to help.

Here’s a scenario: you want to help but don’t have money to spare. If, during the course of a year, you spend money shopping online, attending sporting events, going to the movies, even traveling...you can make the $25 dues back. We’ve partnered with a discount program called Working Advantage, who provides special offers and discounts to our members. So in purchasing what you would normally purchase in a year through Working Advantage, you just might make that $25 back. Please consider joining.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

You're my baby

Four years ago this week, I was 38 weeks pregnant. I didn't know you then. I didn't love you then. I was two weeks away from meeting you for the first time. I willed myself to have maternal instincts, but they just weren't there. I took care of you, by taking care of my body that was housing you, but I was just a caretaker. I wasn't your mother then, I was somebody else.

I wonder if I'd been able to see the future what I would have thought. If I didn't feel ready for motherhood, how on earth could I have been ready for special needs parenting? What would my intact heart have thought about the thousand times it would break?

Would I have looked at you, my sweet, amazing, resilient, determined child and known how proud I would be of you?  Would I have been surprised that there are people all over the world who love and root for you every day, cheering at your small but significant successes, some without having ever met you?  I'm not the only one to take delight in your your extraordinary everyday achievements.  Back then, I didn't know any of this.

How would I have felt knowing that I was giving life to such an incredible soul?  One who giggles at jokes the rest of us don't hear, but are so captivated by that joyful sound that we join in, wishing one day we would understand.  One who sees things differently.  One who is so much more.  One who sometimes feels with such intensity that she has to shut herself off, and withdraw even from those who love her best.  I didn't know then the ache of not being able to reach you, or comfort you.

As I was packing my bag for the delivery room, I didn't know how hard this world might sometimes be for you to live in. I didn't know how strange and scary it might seem. If I did, I might not have been wishing that you vacate that cozy refuge. If I'd known that some people might misunderstand your unique ways, I might have been content to shelter and protect you as long as I could.

I didn't feel any of that, I felt nothing but a fear of what a more than 9lb fetus would do to my body. Me. It is a good thing I put myself first then. I didn't know that once I met you I'd never be able to do it again.

That nothing that I felt exploded into everything when I first saw you. When I held you in my arms and you looked up at me, the switch was flipped, and I became who I am now- your mother. I'm still awed by the intensity of your gaze, when I'm fortunate enough to receive it. My heart was flooded with those elusive maternal instincts, so I said the only thing I could manage. It wasn't profound, it betrays all the love I have felt for you then and since: "You're my baby." And four years later, you still are.  But now you're a sweet girl who dazzles everyone who meets her, and one day you'll be an incredible woman, and I look forward to meeting you all over again.



Blogging for Awareness, Day 19

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 19:

We want to hire a staff.

We’re growing! In fact, we’ve grown so much that it warrants a full-time staff person. Membership dues would help underwrite that person’s salary. Please help us continue our growth so that we may design more programs to support each other and advocate for our families.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

Blogging for Awareness, Day 18

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 18:

Your dues get put to good use.

Membership dues are our “bread and butter” and help cover operating expenses like running the website. Please keep us up and running!

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

One for the Team

My son has ADHD among other things. The other things include Autism Spectrum Disorder, specifically, a pervasive developmental delay. Let me just go ahead and say it, the ADHD is what kills us around here, not the ASD/PDD-NOS.

Don’t let anyone tell you that ADHD doesn’t exist. (A friend’s son came home from school recently and said his teacher said this. “There is no such thing as ADHD. Kids just need to focus.” Let me assure you, the situation is being handled.) It may be misdiagnosed. Our doctor (and I) personally believe it is highly UNDER-diagnosed, but I’ll go ahead and give you that it is also misdiagnosed.

Yes, pharmaceutical companies are getting rich off ADHD meds. Yes, the media has gone nuts with all things ADHD, muddying the water and in most cases, not being very helpful. Yes, there is a lot of misinformation, misdiagnosis, misunderstanding, and unfortunately, misuse of meds.

However.

When properly diagnosed and properly prescribed and properly administered and properly regulated, they are a life-saver. For everyone. Literally. We originally put my son, Rojo, on meds because the doctor said he’d lost two patients just like Rojo at his age (four). They ran in front of speeding cars and were killed. No impulse control. Hyper activity. Disorganized thinking.

Because the one and only side effect for Rojo is appetite suppression, and because he is painfully thin, we do not medicate him except for his school hours. He is totally un-teachable without meds, and even with them, it’s a challenge. He still taps and hums and repeats and needs to be constantly reigned back to the task at hand, but they help tremendously. It does not make his ADHD go away, it softens it.

What this means, is that 100% of our family time is tremendously affected by his happy yelling, singing, tapping, humming, frenetic pace. The house literally pulses. There is an undeniable beat you can feel (and hear) half a block away. I swear the windows rattle. Poor Flicka does nothing but sleep when he’s at school, as following him all over and over and back over the house when he’s at home, totally kicks her ass. You know when you drive up to a stoplight and some obnoxious person has their stereo up so loudly, with the base pulsing so much your own car sways and you can’t even talk to the other people in your own car, or hear your own music, much less hear yourself think? That’s what it’s like.  Always.

Not a single exchange of words between my daughter, husband and myself takes place without interruption and lots of noisy (yet happy) interference. Forget conversations, I’m talking about the inability to say, “Good morning!” without having to raise your voice above the ruckus.

Every now and then we can simply take it no longer. We realize we’re yelling at him and there’s nothing he can do about it. We realize we’re snapping with each other. We realize that instead of trying to communicate there’s just a whole bunch of never minds going on. That’s when we decide to medicate him on an off day, and give ourselves a day off, too. There are simply days that what’s best for the rest of us, is best for him, too.

Blogging for Awareness, Day 17

All month long, Hopeful Parents is celebrating National Family Caregivers Month and National Blog Posting Month. Celebrating is as easy as 1-2-3:

1. If you blog about your child with special needs, include your post for the day below. More details about Hopeful Parents Blogging for Awareness are here.

2. If you like Hopeful Parents, let everyone know by "liking" us on Facebook! Click on the "Like" button on our sidebar, or visit our Facebook profile. We're trying to get to 5,000 likes by the end of the month...

3. If you luuuuvvvvv Hopeful Parents, become a member! All month long, we're giving you one good reason every day to join. Reason No. 17:

You want to reach out.

So often we are so entrenched in helping our children that we forget to take care of ourselves. When there is a free moment to let go and take a breath, it can be hard to know where to turn. Members of Hopeful Parents can reach out to each other to lend support or to be supported – in a community of understanding and acceptance.

That's all for today...see you tomorrow! And don't forget to add your link. Let's create some awareness about what it's like to care for a child with special needs!

mama's here

“When u come to the end of all the light you know, and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen; either you will be given something solid to stand on or you will be taught to fly.” ~ Edward Teller

*

It's close to ten p.m. as my nine year-old daughter, Katie shuffles into my room in her pajamas. She is crying.

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"Baby," I ask, "what is it?"

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She sniffles into her sleeve. "Mama .. I can't ... I just ... I need you."

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She stifles a sob.

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I sit up in bed and pat my lap. She climbs up and curls herself into me, throwing her arms around my neck.

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Years dissolve as I hold her just as I did when she was a nursing newborn. Her body is bigger now - comically so - but she is still my baby.

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"Tell me, sweet girl," I say softly. "Tell me."

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"It's just, well, I just .." a sharp breath swallows her words.

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"Take your time, sweet girl," I tell her. "Take your time."

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She looks up at me, her eyes wet with tears, pleading for something. Comfort. The words begin to tumble out, falling on top of one another.

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"Mama, I had this dream," she says. "Or this image. I don't know what it is really, but I can't make it go away. I just keep seeing it in my head, over and over again and it's scary, Mama and I can't get it out."

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She stops abruptly and buries her head in my chest.

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"Tell me, baby," I say. "Whatever it is, it's OK."

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She sniffles and wipes her face into my shirt.

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"You and I are in an elevator," she begins. "And we're really high up - like REALLY high, Mama. And there's a hole in it, right in the middle of the floor."

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She shudders and I wrap my arms more tightly around her.

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"And I don't see the hole and I go to step right into it. And it's like fifty miles down and it's dark and it's really scary."

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I grab her instinctively and her body curls into mine. She has managed now to fit every inch of her long, nearly ten year-old body into my meager five-foot frame. She is contained within her Mama.

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"And you grab me, Mama," she says breathlessly. "And you save me. And I'm safe."

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"Yes, baby," I tell her. "Always. I'm here. I've got you. You're safe."

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I squeeze the tight little circle of her as if to make the point. I'm here.

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It's always been the first thing I say when my babies call for me. Mama's here. It's instinctual. It's who I am. Mama's here.

.

So that's it, then, right? "It's OK," I say again. "It's OK, my love."

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"But Mama," she says.

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"Yes, baby?"

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"What if you're NOT there?"

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I begin to say something, but she's not finished. I hold my words.

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"You saved me, Mama, she says, pleading with me to understand. "You SAVED me. WHAT IF YOU'RE NOT THERE?"

.

And there it is. The rawest nerve of motherhood. The inescapable horror of knowing that someday, we won't be there to save them. And the desperate fear that some of our children may never have the tools to save themselves.

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I hold her in the darkness. And I make a promise. Not that I'll be around forever, but that I'll be here for as long as she and her sister need me to be. And I believe my words. Because as I look down at my sweet girl curled into her Mama, I know that this - this moment - this right here, right now - is who and what and where I was designed to be. And that is all that matters.

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Mama's here.  

**

Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into.