Special Needs Battle Fatigue

As a parent of a child diagnosed with Prader Willi Syndrome, there are times in my life when the medical complexity of this diagnosis, begins to take its toll on me.

This month has been one of them.

After being diagnosed and treated for strep throat, my son, Nicholas developed a severely swollen left lymph node. Our pediatrician, an ER doctor and our Ear/Nose and Throat Specialist, all suggested that Nicholas may have a branchial cyst or malformation of the lymph node. With so many astute physicians in agreement, it seemed like a medical certainty.

In response to this possible diagnosis, we scheduled an MRI. Nick's anxiety issues required that he be sedated during the procedure. We were asked to come into Boston early for our appointment, only to discover that the MRI staff was many hours behind schedule.

It was a long and torturous experience for our entire family.

When it was over, we waited for almost a week before hearing back from the ENT.

Results of the exam showed that Nicholas did not have a cyst or malformation.

While we were very thankful to hear the happy news; the emotional and physical stress of the event made us feel overwhelmingly vulnerable and fatigued.

These feelings are a healthy response to a stressful situation. But when you are the parent of a child who is medically complex, these difficult medical scenarios can begin to accumulate one after another and pretty soon it becomes difficult to transition the soul back to that quiet, peaceful, and healthy emotional state.

Last week, I had trouble relaxing. I wondered why this was happening since I should be happy that there was nothing wrong with Nicholas.

I thought back to all the events of this past year and rewound in my mind, the enormity of my load.

Nicholas and I have met with specialists in endocrinology, neurology, psychiatry, gastroenterology, nutrition, ENT, opthamology, orthodontists, two neuropsychologists, an orthopedist, PT,OT and ST outside specialist evaluations not to mention his regular visits with his dentist and pediatrician. He has been fitted for a back brace, foot orthodics, braces and glasses. He has had x-rays, EEG's and an MRI not to mention several visits to the ER and an overnight stay in the hospital. There were several IEP's, a hearing and negotiations to transfer Nicholas to a new school.

While all of this running around took a physical toll on my body, there was a much more debilitating consequence. I experienced a type of emotional bleeding that occurs when a parent truly understands and accepts their child's medical fragility and vulnerability. It is a sobering awareness, an in-your-face understanding of a harsh and unthinkable reality.

In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.

I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.

I am thankful every day for our good fortune.

I am also however, only human, and unable at times, to overcome this feeling of helplessness.

I believe I am suffering from a type of Special Needs Battle Fatigue.

Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response.

I am experiencing things like: headaches, fatigue, edginess, difficulty concentrating, a lack of tolerance for noise and confusion, emotional numbness, bad dreams, strong feelings of guilt, depression and worry, angry outbursts, difficulty sleeping, and a loss of interest in things that were once enjoyable.

I realize that by exposing myself to this constant heightened level of stress, my physical body may begin to rebel and become vulnerable to a variety of sicknesses or disease, which only serves to perpetuate the greatest of all my fears....the fear of leaving my son too soon.

But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.

I have discovered there is a critical aspect of special needs parenting that I am neglecting.

My mental health.

I need to develop a plan that seeks to address this issue.

I need to help myself.

When Nicholas was first diagnosed with PWS, the initial stress of this devastating diagnosis and the accompanying lengthy list of specialist appointments caused me to experience a similar period of darkness. I named this depressive period.....the Prader Willi Blues or PWB's. It was, I believe, a form of Post Traumatic Stress.

In order to preserve my soul and continue to care for my suffering child, I developed a list of helpful strategies to help combat the PWB's.

Now, 10 years later, I am finding the need to revisit some of these same therapies and perhaps employ them on a more regular basis.

This is my Sanity Saving List, an ever changing record of helpful tools that help to preserve my emotional strength. When the fatigue of performing in the medical arena begins to wear me down, I try to implement one or all of the following strategies.

1) Hire a Babysitter: This is important to finding some alone time for myself, a time to do the things that I enjoy, alone and uninterrupted. (Time hiding locked in the bathroom does not count)

2) Alone Time with Hubby: An important time to reconnect with my husband and remember what brought us together in the first place.

3) Let House Work Slide or Hire a Helper: The pressure and time involved in keeping a clean house is a thief of time and can interrupt those precious few moments needed for rest and relaxation.

4) Cancel Appointments: Nicholas visits with so many specialists, I could literally spend all of our time just visiting with them. When times get tough, I try to take an entire month off from any specialists and non emergency visits.

5) Listen to Music: This is a new one that I have discovered. Locking myself in my bedroom with the door closed and an ipod filled with my favorite music has done wonders for calming my spirit.

6) Meditate: This is also a new one for me. I have found that purchasing a few good meditation cd's is a helpful tool. It took a while to find the right cd's that resonated with me. Meditation is alot like homework, it was difficult at first for me to make it a routine, but when I did, I noticed an improvement in my mood.

7) Nature Walks: I learned this one from my son, Weston. Long walks outside amidst mother nature is another winner for relieving tension.

8) Talking: I find it very cathartic to talk about how I am feeling with others. It is when I repress my thoughts and feelings that I notice a darker side to my disposition. However, there is a huge warning here. I must be very selective in my choice with whom to speak, for some individuals are not instinctively designed to handle such a heavy load, speaking with these individuals can actually make my pain worse. I try to speak with only those who are thoughtful and willing to listen with a sense of kindness, compassion and void of any judgement.

9) Therapist: Early intervention services in our state included the services of a family therapist. I am continuing with this incredibly helpful intervention.

10) Mini Vacations: I try to plan several mini family vacations throughout the year. Looking forward to time away from the rat race has worked wonders for us all, especially Nicholas who loves new adventures. A few days away works wonders in creating a restful diversion.

11) Write, Write, Write: Even if I do not share these thoughts with others, the process of getting it out on paper (or computer screen) has been particularly cleansing to me.

12) Sleep, Rest and Relaxation: During times of increased stress, I try to sleep more. If I can't sleep, I try to just rest and listen to music.

13) Special Needs Groups and Individuals: No one understands me better than those who share my struggles. Reaching out to these groups or individuals can provide some interesting and effective solutions.

14) Positive Reflection: This, to me, is the most important. With every stressful event that has ever occurred while raising Nicholas, if I dig deep enough, I can always find an important lesson. So, when my mind wanders back to disturbing events of the past, I force my brain to explore a positive aspect that occurred because of that experience. I do not repress the event, since I believe it is important for the mind to rewind the experience and reflect upon it.

Implementing these strategies is painful. Maintaining them...even worse, feeling like a type of special needs homework, a dreaded but necessary evil. But by calming my spirit and accepting my child and his diagnosis, I am, in a way, helping myself to live a more happy and fulfilling life.

Ironically however, of all my life saving strategies, it is my son's soothing sage-like spirit that effortlessly balances my warrior woman energy, it is interesting to me that when I physically tire from the heavy load of caring for my son, it is he who comforts me most, and I wonder if perhaps this is no accident?

Would love to hear what helps all of you?

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Lisa Peters writes about the adventures of special needs and family life at her blog. Please come share our experiences at www.onalifelessperfect.blogspot.com. If you would like to learn more about Prader Willi Syndrome, or make a donation, please visit our PWSA USA National Organization at www.pwsausa.org. Thank you for reading.

Among Peers

Katie is 8, and in a typical 3rd grade classroom. She has a 1:1 aide (and spends almost half of every day outside of the classroom, for various reasons), but is in what the school believes to be the" least restrictive environment".

Mainstreaming is all the rage.

Although, to be honest, I am not so sure I share that view.

Katie has made progress, sure. She doesn't hit the other kids anymore. She attempts to involve herself, and does have the desire for friends and social interaction.

But, at the end of the day, trying to fit in with typical 3rd grade girls is hard. Really, really hard. I don't get to see her at school, but I do get to see her at Brownies (she was able to join a troop this year, after being on a waiting list since kindergarten. Who knew?).

And sometimes, it breaks my heart.

The looks from other girls. The way she desperately attempts to join in, but sometimes her anxiety takes over and the behaviors come out. The subtle, and not so subtle ways, she is different.

How it is work. Trying to fit in. Trying to make friends.

It's work.

Recently, Katie met a little girl her age through a special needs dance class. They hit it off. She loves this little girl. She asks when she can see her (something she never does with other kids).

When Katie had a hard time during the last day of dance, when parents were invited in to watch, her friend didn't give her a look. She just called her name, and kept asking her to come back. Not phased by K's behavior. Accepting her. Loving her. Because there would never be another choice.

They can truly engage with one another, being just who they are, and it is a beautiful thing.

I wish it could always be like that. These are her peers. She connects with them. She has real relationships with them. While we are pushing her to mainstream, to conform, we fail to realize there is already a place for her. A place she belongs. Where she can grow, and be loved, and be happy. With children who get her. Those are her peers.

I know for some, mainstreaming is the goal, but I would be perfectly happy if Katie was able to spend her days with other children like her new friend. That seems like the least restrictive environment to me.

And the happiest.

I have always said, I don't want or need a typical child, just a happy one That is what I am fighting for.



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Jen (who apologizes for her late post this month) is a SAHM to Katie, 8, and Ben, 6. She lives in small town New England with her husband, kids, and too many pets. She spends her days trying to hold on to her sanity, and plotting her escape to a warmer climate ;) You can find her on Twitter @JenTroester, and she blogs at I Am Still Looking Up. 

Hearing the Music

Nothing can shoot primal fear into the soul a parent like me as a mental health med change in our teenage son can. Nothing.

We're in the middle of one right now. Well, that's not exactly true, because we've been working on something since July. Changing meds that can propel your kid into anxiety that pulls so strong against living well is excruciating to watch close up. But you do it because of the potential benefits. Those potential benefits speak to us, drawing us in because we have to try.

It goes a little like this:

A little less of that, no more this, back on that a little, then more, then on that and less of this one. Again. Repeat.

We've been in this dance for a long time. Nearly three year ago we signed our son over to a (mental) hospital to keep him safe. Luckily we've not faced a huge number of med changes for him - maybe 8-10 - and only a few that have been significant. Significant being a change required because something was making his day harder, not easier. If his depression, anxiety or impulsiveness got in the way of engaging in life then we consider a med change with our doctor.

In our special needs world waiting for test results, or meds to work or to watch closely while a med can improve life or make it harder is a lot like playing an instrument. I've always believed it's like using that instrument to play a song and when you do play, you hear nothing.

Maybe you hear nothing for days, weeks, months. When you do finally hear the music, it is when you learn if the music makes any sense. Did you hit wrong notes? Just a small mistake and recover so the end result is okay? Or when you heard it, was the music unrecognizable, not music at all and something that was ugly?

When the music we play is unrecognizable, we know what's going to happen. We always do. We will play it again and again until we recognize the song. And the happy, engaged boy we know is in there.


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Julia Roberts is on Twitter at @juliaroberts1 blogs at Kidneys and Eyes, is co-founder of Support for Special Needs, and writes for Aiming Low. She's a lover of Diet Coke and naps. She'd love to start a petition to get that actor Julia Roberts' twitter handle. 

Thankfulness, As Experienced By a Special Needs Mom

The days are turning crisp here in the South.  Turkeys are beginning to thaw in refrigerators across our nation.  Our yards are covered with a crunchy coating of leaves that threatens to swallow the last bit of green whole, that is until Spring brings forth the abundance of sunshine and new life along with it's requisite coat of yellow pollen.

As I settle in under blankets and switch from sipping sweet tea - the table wine of the South - to hot tea, I am aware of a feeling that seemed absent from the holidays last year.  It was buried deep within the hollows of a heart that was still hurting from my boy's autism diagnosis six months prior.  It was covered with a heavy blanket of longing and regret that my boy was not anticipating the holidays with the glow of joy that I imagined and awaited after the birth of him, my first child.  It was overshadowed by regret over the things that would not be that holiday season - like watching him eat turkey, or delight in Santa, or rip through presents with anticipation.

What was buried within, and what has begun to escape this year, was thankfulness.

Perhaps it's complacency, but I feel more at peace with the holidays this year, even in what will be their modified state.  The things that would have given me sadness last year - like Jack being unable to partake in Thanksgiving dinner or not understanding the magic of Santa Claus - seems so normal to me now that I barely give it a second thought.  This is simply how my family operates these days, but I am thankful for that acceptance.  It makes it easier to enjoy the season to come.

I am also thankful for the blessings that I have with an autistic child.  Yes, there is much to be thankful for with being a special needs parent.  I am thankful for the plethora of therapists, teachers, and doctors who work with my little boy on a daily basis, who take my calls and emails on weekends, and who work tirelessly to help my boy achieve his milestones.  I am thankful for the wonderful network of fellow special needs parents that I have met in the past two years, for it is with them that I've found the best resources, the most kindness, and the greatest understanding.

Most of all, I am thankful for the lessons my son has taught me over the past two years.  As a result of his own sensory needs, he has made me infinitely more in-tuned to the world around me.  I see potential sensory triggers when I might have ignored them before.  I also see the beauty in the things that catch my son's eye, like bubbles floating on a breeze, the soft glow of a light-up toy, the gentle rhythm of a ceiling fan's endless spin, or the way that light can hit a table just so.  Imagine all that I would not see and experience in this world if not for my boy!  I am thankful for that opportunity.

I am thankful that my sweet boy has helped me appreciate the little milestones in life.  When he was an infant, I focused on the milestones that were listed in the books - walking, talking, crawling, etc.  When he met those milestones late - or did not meet them at all - I lived in a place oscillating between denial and despair.  Now, not only do I not worry about the milestones he has not met on time - which is nearly all of them - but I treasure the milestones that are missed by parents of typically-developing children.  I rejoice when my nearly 4-year old eats a meltable (cheese puffs!) for the first time.  I am elated when he produces just a few markings on a page with a crayon.  Each word out of his mouth is sweet music to my ears.  Each smile - and yes, even the flapping hands that often accompany it - simply lights up my life and I appreciate each and every one.

I am thankful that my boy has helped me find my strength.  My voice.  My courage.  Before he was diagnosed, I was content to sit silently and allow the world to pass me by.  I did not want to rock the boat.  Leave change to the other people.  Once my son was diagnosed and his needs were greater than I could have ever imagined, I found that I was not only willing but able to fight for the future of my little boy.  I began writing more.  I got involved.  I found that I did not fear action.  I wanted to become an instrument of change.

All of this because of one little boy.

This year, I am thankful for him.  For each and every moment he has presented to me that has helped shape who I am today.  I am thankful that I have the courage to approach the future with optimism, realism, and hope.  And I am thankful for all that is yet to come.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-year old little boy on the autism spectrum.  After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.  

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  She has also been featured on The SPD Blogger Network and The Oxygen Mask Project, to name a few.  To follow more of her ramblings, like her on Facebook or follow her on Twitter!

It's that time of the year... again

Lately I was not feeling much hopeful. To be honest, I'm still not on the level I usually am. That's the mayor reason why I had my mouth (and fingers) shut.

It's that time of year again. Time I absolutelly don't like at all. Hate would be the closest feeling I feel. The time between DST and Winter Solstice. This days slowly kill me.

I leave our home in the dark and I come home in the dark. Hell, feeling like I'm a vampire - going to the coffin (read my office) in the morning before sun comes up and returning to my family in the afternoon, when the nigh already falls.

Yesterday it was fine day. I saw the sun after - yup, it was more than a week... We have a huge oak tree standing near the house and I absolutelly adore it, but when the fall comes, the lawn is full of leaves.

So in the afternoon I took kids and we went outside to grab leaves from the lawn.  Was that good idea or not, I won't talk about it. 

When I almost finished grabbing I found a small daisy blossoming out of the grass.

The last before winter? Perhaps, but as already snowed 2 weeks ago, just didn't last long, this small flower reminded me...

That no matter how cold or dark or lost I might feel, I have the will to rise and survive. I have hope. 

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Petra is a Writer, Mum of Two, Wife to One, Full Time Employed Woman... Warrior for a better Future for her child with Autism and for the one without.  She blogs at The Way through the Circles of Hell

Not Getting All Carried Away

Recently my father-in-law passed away. "Papa" lived just a few miles away and had an active role in my children's lives. At ages 16 and 18, this was their first experience losing someone close to them. They each have shown their grief in very different ways. My daughter in the way you'd expect: tears, sadness, wanting to be close to others that are also grieving his loss, reminiscing about him. My son, Rojo, hasn't shed a tear, and doesn't want to talk about it. He did go to the funeral and was surprisingly well-behaved. Afterwards, at the reception at our house, he also was uncharacteristically mellow.

As I watched my father-in-law age (he was nearly 87), I saw just how much in common he and my son had. Somehow, I'd missed it along the way, but the aging process brought it into focus. They were both people that didn't want much more than their family around them, and maybe a few good snacks. Neither were impressed by money, accomplishments or stature - in fact, oblivious to it. They were both happy wearing their same favorite outfits over and over and over again, choosing comfort and practicality over everything else.

One of the very last things my father-in-law said before he died was, "Now don't get all carried away!" as he swiped my husband on the arm from his hospital bed. The command seemed to come out of no where.  He simply looked up, bat at my husband and made the proclamation. We used that as our guiding force through the next few days of life-and-death decision making, then at last, burial plans.

I guess more than anything, that's the thing about Rojo. He doesn't get all carried away. He lacks the very essence of what it takes to get carried away - an ego. He doesn't strive. He doesn't aspire. He doesn't want. He just is. Likewise, I think that's why he isn't grieving in the way the rest of us are - he's in the present, he lives here and now and accepts it for what it is: all we have.




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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. 

Things Change

I wanted dark wood.

The walls were light green with white wainscoting and I thought dark wood furniture would make the room feel more grounded. Modern. Just right for my baby boy.

A couple years later, dark finishes would be everywhere, but at the time blond wood was the fashion. I found a crib with an espresso finish, but couldn't find a dresser that was just right: big enough and not too tall so it could double as a changing table.

We found an unfinished dresser. The dresser, in itself, was nothing special. Pine. Simple. But the work we put into it was the very definition of a labor of love.

Jeff stained it to match the crib. I added jungle animal drawer knobs, lined the bottom with shelf paper and filled the drawers with baby clothes.

The top right drawer held diapers. Socks in the middle drawer. Jammies on the left.

As Moe grew, the contents evolved. The bottom drawer had to give up its blankets to make room for shorts and swimsuits. Jeans and t-shirts replaced onesies.

Other things changed. Chewies and sensory items, stretchy vests and a bright green body sock found their home in the top left drawer. Some things stayed the same. Diapers, replaced by pull-ups but diapers nonetheless, remained in the top right drawer.

Last weekend, we had to donate the dresser. Moe had been sleeping in a bed tent, and after a year or so of being climbed on, one of the poles broke. The tents are on back order and we needed a change. So we took down the tent, and to keep Moe safe we took all the other furniture too. The toy chest went to his sister's room. The swing and his little work table can be relocated every night. But there was no place to put the dresser. It had to go.

Jeff brought the dresser to Goodwill. They almost didn't take it at first, but thankfully they did. I busied myself fighting holiday traffic (already!) to get a set of drawers that would fit in Moe's closet. It was the right thing, the safe decision.

The next day I had another donation to make, this time of outgrown clothes that I had collected emptying the drawers. I drove back to Goodwill, and I couldn't help myself. I went inside.

And there it sat. My dresser. I tightened the drawer knob that always came loose. I knew it was just a thing. But that thing had seen us through a journey. A journey that began with hopes and dreams and the cutest little baby you've ever seen. And just as those hopes and dreams have had to be adjusted since Moe's (still the cutest boy you've ever seen) diagnosis, some practical things have had to be adjusted too.

Waiting to be purchased

Even so, I cried on the way home.

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You can read more about Moe and his family's journey with autism at Jen's personal blog, Anybody Want A Peanut? 

The joys and heartaches of play

Sometimes I let my mind get the better of me.  Instead of experiencing things for what they are I imagine what they could have been.  I do this sometimes.....and yesterday was one of those times.

We were at a birthday party for some good friends.  Everyone knows us.  Everyone knows Emma.  These are really easy places to socialize because I don't get the pity look - the oh, poor thing in a wheelchair look.  None of us want pity because our life is no something to be pitied.   I also don't get the somewhat ridiculous question of "Will she ever walk?"  Truth be told, I'm not too concerned with Emma walking and would rather she start talking - now that would change her life!

The birthday party was the kind where there were bouncy castles and houses all over.  All of them in primary colors and you can't help but smile when you walk in.  It fills the children with energy and there is lots of laughter and squeals all around.  It's a happy place and we love happy places!

We've been to these kinds of places before and Emma loves the bouncy fun.  But this time the bounce houses weren't adult friendly.  The size and navigation of them were made strictly for children so I couldn't take Emma through them without likely hurting myself.  There was one large structure that was made for littler children, but since Emma isn't crawling she couldn't really navigate through and it wasn't so exciting to her.   We were able to make one of the large bounce houses work - I put Emma in through the opening and laid her on her back like we usually do and when the children bounced around she was bounced.  She smiled the whole time and really giggled when the children bounced over her while being careful not to fall on her.  For all the other structures, though, she had to look at all the fun from the side.

I think Emma really wanted to go on the large bounce slide.  She squealed with delight each time we went over to watch her sister slide down and I felt bad that I couldn't take her on it.  Actually, I'm not sure I could have navigated the slide on my own let alone while carrying a 5 year old!  I also felt bad that she was looking on lots of the fun from the outside and I started to wonder what it would be like if she could walk.  What it would be like watching her climb up the slide wall and squealing with delight as she slid down.

Then I wondered if it would have been better if I didn't bring her to the party and I realized it was my hurting heart that brought me to that question.  Me not wanting to feel how different my little girl is when in a roomful of children and cheery bouncy houses.

But I know that wouldn't be fair to Emma.  When looking at her in that room she was all smiles.  Enjoying watching the children run around, bounce, squeal, hula hoop, climb the rock wall.  She enjoyed every minute of it even if she couldn't physically participate in the fun.  She was able to participate by just being there.  By being happy in the moment.  By experiencing joy.

I say it again and again - I learn a lot from my children.  So I finally decided to take my cue from Emma and just enjoy the moment and not get caught up in the what ifs.  To live life to the fullest and full of joy no matter the obstacles.  Thank you, Emma, for the reminder!


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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Where to start...

I missed my post last month, and this month I'm a day late, struggling a little to find the words to write.

Last month our life hit crisis point.

My loving, happy, giddy little boy became an angry, sad little man. It all blew up in our faces when he told his teacher, "I hate myself. I want to kill myself."

Part was ritalin. It can cause suicidal thoughts. The risk for this is higher in kids with mood disorders... which now we have a confirmation of. My little guy was depressed, and the ritalin made things worse and caused him, at the age of 6, to want to take his own life.

It resulted in a  note home from the school psychologist stating my son was "Low Risk for Suicide". A 6 year old.

His psychiatrist left it up to me, but wanted him inpatient in psychiatric care. I told him no.

A work-in appointment later, medication adjustments and a careful dance avoiding putting too much pressure on him, and he is back to his happy, silly self.

But I find myself wondering what will happen next time. This is not a one-time deal. Mood disorders are lifelong. Just like his autism, we will be dealing with this forever. He will be dealing with this forever.

As a parent, you just want your kids to be happy. That's all. He can be different, but just let him be happy. And that one goal was pulled out from underneath us, leaving me reeling and trying to find my footing again. 


- - - - - - - - - - - - - - - Katie is the mommy to two awesome kids: one mostly typical little girl and one little boy who happens to have autism. She blogs about their crazy life at Okay, Who Turned Out the Lights?

We survived Halloween 2012

Sounds like a T-shirt moment.

But we did.  We made it through.  It was Cary's first Halloween so naturally it was my job to make sure I had the obligatory costume.  Since she has super tense limbs I settled on a flower.  I wasn't even sure she was going to let me dress her up as dressing can be painful for her but for some reason she loved the flower outfit.

My poor son was another story.  I am a last minute person by nature.  I don't mean to be I just am.  So the Sunday before Halloween I turned to my husband and asked what Marvin should be.  He told me that I'd better get him a costume pronto.  So we drove down to the store and Marvin had to touch all the costumes and see what one was softest.  He found it.  It came with a mask, but the mask was too big.  This was his first year going door to door. Normally we do it at church but we were all down with bronchitis this year.  Here they are:

Despite sensory issues they did well getting ready.  Then we went.  It was dusky out and the first two houses went off without a hitch.  Then we got to house three.  I noticed an "unusual" figure on the porch dressed from scream.  It took me a minute to realize that that was a real person.  At first I thought he was being nice and holding really still since I had small children with me.  I was wrong.  After Marvin took a candy from the bucket on the porch Mr. Scream rose up and started towards Marvin.  This is scary enough for anyone, but add a child with triggers and you up the ante.  Marvin lost all color, screamed, and forgot to breathe.  While I am working on reviving my child the baby who is terrified of all things Sesame Street is calmly laughing, cooing, and trying to chew on the big scary man.  Go figure.  My husband and I got Marvin functioning again and the scream guy decided that maybe this wasn't such a hot idea.  I was really ready to deck him but figured that yelling at him loud enough for the neighbors to hear would suffice.

We made it out.  My husband and I decided to drive home at that point as I had had enough Halloween to last a life time.  As we were walking to the car Marvin and I took joy in telling ALL the people about the scary man on the porch and hopefully ruining his Halloween as well.  We were almost to the car when we saw a yard full of fun inflatables and tables laden with toys,  Marvin just stopped and stood out there.  A man  and woman approached him.  They asked if he liked toys.  Marvin had a death grip on my hand and nodded.  The man told him to come over and he could choose some.  Marvin timidly stepped in and saw his prize.  A foam sword.  Normally I hate weapons.  But after tonight and him just looking at me with those big blue eyes.  I caved.  The woman said he should have some more.  They loaded him up with a Frisbee, action figures, ball, and a giant basket loaded with candy.  Then they looked at Cary.  The woman smiled at her and gave her a light up dinosaur.  I don't know how they knew what she needed, but they did.  Both of my children ended Halloween on a high note.  Not all of our holidays end that way.  But this one did.

As we roll into a new season and a new holiday I think of this very nice family and hope that they found an envelope with a special surprise in there from a mom who is so thankful that there are still amazing people out there in this world who can take a simple day and make it magical for her very special children.

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Amy Fields is a mom who has adopted two special needs children.  You can follow her life at Many Kinds of Families.  

Finding Friends

My kiddos have entered 1^st grade, and while it’s not as sweet as kindergarten, I continue to be thankful for the fabulous school and the educational support team for Sylvie.  Watching Sylvie’s twin sister navigate the world of 1^st grade friendships, however, has been an exercise in patience and fortitude on my part as a mom. I admittedly get nervous and a bit protective hearing about my daughter’s recess and lunch navigations with her peers.  I feel sad when her old best friend has found someone else to play with.  I try not to take it personally, but watching these childhood negotiations conjures up all kinds of memories of my own childhood. 

A couple of years ago, I resigned myself to the fact that Sylvie may never have deep friendships with her peers, although she has plenty of good people who love and care for her.  She has classmates who like to walk with her or make her laugh.  For this I am grateful.  Increasingly though, I worry about Sylvie’s twin sister.  It’s not that I don’t think she can make friends, because I’ve watched her do so.  And so far, nobody has made fun of her for having a sister who doesn’t walk or talk.  The girls’ school has done a fabulous job at talking about diversity and difference, and Sylvie is part of that mix.  But people are wacky:  we say things that are mean; we are ignorant or say the wrong things when we don’t know better.  I try to surround our family with other families who know Sylvie, and embrace her difference.  Uma and her parents need that support as much as Sylvie does—perhaps even more so.

Increasingly, I’m noticing how difficult it is for me, as a mom with a special needs kiddo, to make my own new friends. I have a strong cadre of really great pals around town, and I’m not seeking to replace them.  As working adults, many of whom have kids of their own, it’s hard to find time to dedicate to adult playing and connecting.  I work too hard, trying to stay above the poverty-line and maintaining some semblance of a successful career.  When I meet potential new friends, there’s a whole lot of explaining and background history to give about my family situation. If I don’t call back right away, it may because I’m dealing with yet another medical crisis or lacking childcare.  If I don’t say “yes” the first time, it’s not that I’m uninterested. If I am the one who is calling a lot to initiate a new friendship or getting together for a meal or a cup of tea, it’s not out of desperation. I appreciate when others take the initiative and keep asking me to do things, again and again. Parents who have neuro-typical kids cannot even begin to imagine our daily sagas, and I appreciate those adults who just show up at our doorstep—for meals, quick chats, check-ins, play dates, or dropping off cookies. It’s probably why I find some solace in Facebook as my daily mind candy as it allows me some peripheral connection with family and friends.  I need friends to help me push through my patterns of isolation.  And I want to model to my daughters that making friends and maintaining friendships is a lifetime endeavor. Friendships take honesty, reciprocity, dedication, time, and creativity.   What they are learning in 1^st grade may be the building blocks for their future lives.

Channeling Bill Withers, I believe his words best reflect what I hope I teach my children about friendships:

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you won't let show

When Kirsten isn’t hanging out with her fabulous friends or trying to make new friends, she is a professor of Communication Studies at the State University of New York.  She is the mama of twin 6 year old girls.

Round and Round and Round We Go

I am a hopeful parent of two beautiful children.
I know exactly how lucky I am.
My son has autism and my daughter is a handful, and I tell this to people who ask me to describe them not because I’m a whiner or not hopeful or ungrateful, but because I like to own my story.
I am also a hopeful parent to myself, because I’ve never stopped trying to raise and nurture the complicated kid within myself, the one who wanted to control uncontrollable parents, who wanted to fix the problems in the world, who wanted everyone to like her. This is my real problem child, more than a handful, developmentally in a kerfuffle and if I could figure out how to deal with that I’d be pretty proud of myself, but it’s that inner child who most challenges my hope -- after all, I’ve been at this for about four decades.
My great struggle in life is to remember that all the members of my family have different kinds of needs, and that’s okay.
The other day a very nice person invited my family to participate in an event, and I am sure that my response lacked grace, made it seem like I don’t appreciate my life; I have been thinking ever since why it is that I often end up in situations like that when I try to explain why we can’t, or won’t, or just don’t do things the way most families do. I end up trying to explain that, well, my son has autism and my daughter, well, she is kind of a handful, and then they usually tell me: Kids are kids, all kids are handfuls. What I hear is, “Why don’t you just do like I do? Don’t you know your children are beautiful? Don’t you know you are lucky? Are you a whiner?” Then the little kid in me feels defensive, wants to please everyone, wants to control the universe, and I end up saying something even less helpful, and the spiral ensues.

Then I come home and dwell about it.

And write blog posts.

And so here we are.

Why can’t we do that event that so many other families can do? Well, it’s probably that deeply flawed little kid within me who is most to blame, if you want to know the real truth. And if that is too much information for you, then you should know: my son has autism, and my daughter is a handful, and we can’t/won’t/don’t want to try to be like everyone else, but I’m still a hopeful parent, and a very lucky one at that.


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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at roostercalls.blogspot.com.

Hope through the years....

Birth: The joy of meeting my son was immeasurable and my hopes for the future all shiny and bright.

One year: Tired and bewildered, I exclaimed, “he is a late developer like his brother”. I hold onto the hope that he will crawl sometime in the immediate future.

Two years: Feeling unhappy that I have been dragging my boy to therapies for a year and don't see much progress. Am becoming aware that something is off kilter. I don’t recall any hope.

Three years: The Neuro Specialist said, "don't worry, Mummy, he will outgrow it by the time he is five". Hope raises its head. The Ed Psych handed me some notes on autism as I leave her room. Bullshit, I thought... and put the notes in a drawer.

Four years: Sad, exhausted and cutting myself off from people. That is all I remember.

Five years: No recall. No hope.

Six years: Trying hard to smile. Pretending that I am fine. False hope.

Seven years: Finally, after the stress of no schooling options for my boy, we start our own school. Hope flickers.

Eight years: Life is busy. Still running around trying to squeeze as much information into Nick as possible. Hope is moving with the beat.

Nine years: Addressing the sibling issues. We are all affected by the demands of our roles. Hope shrugs.

Ten years: I feel lighter. I smile more. Life is getting better. Hope enfolds me within arms.

Eleven years: I need to get closer to my boy. I need to play a better, more deeper role. Hope is screaming "do it!"

Twelve years: I am smiling broadly, laughing out loud, loving life. My boy is moving forward. Hope is walking alongside me.

Thirteen years: Relaxed and enjoying a slower pace of life. Mostly happy. Forever hopeful.

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Di lives in a house full of males... two teenage boys, one hubby and two dogs. Due to her youngest son being autistic, she owns a small school for children with autism and developmental delays. Di blogs over at the Bright Side of Life.