Tuesday, November 29, 2011

Gracias

 

We just returned from a trip to Mexico where we had the opportunity to experience dolphin therapy. Aside from being playful and fun, dolphins emit sonar which is said to have a therapeutic effect on the body. While there, our daughter let go of a lifelong fear of "sinking" which holds her back from truly swimming. While receiving sonar to my own head, I personally was able to release some burdens I'd been carrying for a long time. It was as if these things I'd been holding onto drained right out of my body and out into the ocean to be dissolved. 

Dolphins are truly magical, gentle giants. While there, we learned that dolphins are conscious breathers, having to think about each breath. They don't sleep. One half of their brains rests, while the other one is alert, allowing them to breathe. They can't be anesthetized, because then both sides shut off, and they die. 

What would it be like if we all were aware of our breath? Would we be as joyful as the dolphins?

 

 

Michelle O'Neil is author of Daughter of the Drunk at the Bar. She blogs at www.fullsoulahead.com. Her daughter has Asperger's and her son has PANDAS. For more on our dolphin experience click the link in the post above. For more info on the therapeutic dolphin program mentioned in the post click here.

 

 

Monday, November 28, 2011

The Deadly Holiday Season

The holidays are a festive and joyous time of the year. Friends and family gather together to enjoy fun, festivities and, of course, an abundance of food.

For most of us, food is an important part of these parties and celebrations. By preparing, serving and sharing our holiday dinner, we are, in a way, also sharing our love.

But for parents of children diagnosed with Prader Willi Syndrome, the holiday season is a time to be vigilant, a time to monitor our child closer than usual to ensure their very survival.

Every holiday season, we are reminded by our national organization, PWSAUSA, that this can be a deadly time of the year for our children. Due to a malfunctioning hypothalamus in their brains, children diagnosed with PWS, lack the ability to control their hunger and if left unattended, they will eat until they die. This is not a condition that our children will outgrow, they will need to rely on others to monitor their food intake for the rest of their lives.

During the holidays, homes are filled with festive discussions, folks talk and mingle, creating a spirit of good cheer and commotion.  It is during these commotions, that we parents are easily distracted, creating a perfect opportunity for our children to disappear and search for food, food that is of course, everywhere.

School functions and party celebrations almost always include tables overflowing with candy and desserts. Teachers and aides must be carefully reminded of the devasting consequences of leaving a child with PWS unattended during these types of events. They must be informed that a behavioral meltdown is a certainity when our children are subjected to the visual stimulation of such large quantities of food and sweets.

When my son, Nicholas was first diagnosed with this bizarre and deadly disease, one of the first fears that came to my mind was how our holiday traditions would be effected.

Thanksgiving dinner was almost always served at my home, the theme always involving food and lots of it. I enjoyed preparing many of the holiday specialties. Turkey, stuffing, shrimp, mushrooms, sausages, cheese, crackers, chips and dips filled every inch of the holiday table.  Decorative dishes, overflowing with peanuts and candy were placed strategically around the house. Warm pumpkin pies, brownies and chocolate chip cookies covered another festive table along with apple cider, egg nog and a variety of soda. There was plenty of food, family and fun.

But how could my son be successful in this type of environment? How would we monitor his food intake? Would he be overwhelmed by the many sights, sounds and smells associated with a party environment? Would he have a tantrum? How would he ever feel comfortable surrounded by so much food?

After a few years of living in denial and trying to maintain the holiday status quo, I eventually came to realize that Nicholas could not be successful in this type of environment.  If I wanted to ensure the health and safety of my son, it all had to change.

I was so very sad.

I felt like we were deprived and cheated, swindled out of the opportunity to enjoy our sacred holidays. The fun, the laughter, and most importantly the spirit of the holidays, would be enjoyed by everyone….everyone but us.

I believed anything different than our usual holiday routine would be sad and uncomfortable. I was sure we all would be miserable.

But as a parent of a child with special needs, you learn to be resilient. You learn to stop living in the past. You learn to live each day in the now, experimenting with new techniques, new outlooks and new traditions.

For the past two years, Pete, Weston, Nicholas and I have experimented with “going away” for the holidays.

This year, we found a lovely hotel, called the Wentworth Inn in the white mountains of New Hampshire. We stayed for two nights, enjoying Thanksgiving dinner in their cozy restaurant. Nicholas was thrilled, since it contained, of course… a fireplace. The night before our arrival, it snowed, covering the town with a blanket of sparkling brightness.

We took many walks and enjoyed the magical setting. And although we did experience a few “I’m bored’s” and a behavioral meltdown or two, we did not have to address any food issues. There was no stress, no food policing, and more importantly, Nicholas was kept safe. It was an enjoyable holiday experience that we will never forget.

Our new Thanksgiving tradition may not be shared in a house full of family and food but it is still shared with love, love for each other, love for our family and love for our new and different way of experiencing life.

We have learned to embrace different.

We have learned to experience life.

I am thankful to my son for teaching us this.

 

To learn more about Prader Willi Syndrome, please contact our national organization at www.pwsausa.org. To learn more about our family adventures, please come visit our blog at www.onalifelessperfect.blogspot.com.

 

Friday, November 25, 2011

Opening gifts for my daughters

As the holidays approach, I am reminded of all of the times I've opened gifts for my oldest daughter, Gwen. It's been nine Christmases now.

With the big day being less than 30 days away, I'm anticipating opening gifts for my youngest child just like I'd done with Gwen. She and Gwen are both children with cerebral palsy.

This means that those tiny moments when the anticipation of opening presents intersects with physically getting to open them, doesn't happen - at least in the traditional way.

When Gwen was three all of the 'toys' she received started changing from being 'play toys' to being therapeutic ones. I remember all of the age-appropriate ratings on the toy packaging stirring up reminders of the failed (albeit standard) milestones that Gwen didn't reach.

Every time I read the big white letters printed inside the even larger red starbursts, I would feel loss, even during the height and joy of the holidays. The packages read “ages three and under, ages three-plus or only for children five and above.” Each gift I opened usually meant more big blatant letters and starbursts. 

Over the years, Gwen would get more three-and-under toys than I'd like to think about, many of which we still have. I've watched her younger sisters play with these toys as recently as last week, and keep replaying my memories of some of those earliest family Christmas gatherings.

At that time, I used to focus too often on aspects of loss that I was dealing with while often making Christmas time more bittersweet than it needed to be. 

Once I focused more on Gwen, seeing that she loved to receive and open presents, I forgot about the age-ratings on the toy packaging, and also saw that she really didn't care that she wasn't actually opening the gifts.  Most importantly, I made the shift from letting my 'adult problems' interfere with my child's enjoyment (something I still have to constantly remind myself of).

As I look ahead, I'm guessing that there will be times when I need to embrace my own feelings of loss.  However, I do think the second time is easier with my youngest daughter – after all she is not Gwen and I am a much different person than I was in those memories.

These kinds of details, those that so many other parents and families don't get to experience, unite families like mine (and maybe yours, too). Most importantly they remind me that the holidays are about feeling connected with my children.

While this year I know I'll be opening gifts for my daughters, I wonder what you'll be doing. What are your families' non-traditional Christmas traditions?

Tim Gort is a writer, public speaker and advocate who shares his personal challenges and triumphs of being a father of three, two with cerebral palsy, at the family’s bog. 

The Thankful List of This Special Needs Parent

It's the day after Thanksgiving and while I'm feeling thankful and blessed for what we have and all of those things that being around family and feeling accomplished in what food you made and served, I'm still thinking about the "little" things I'm thankful for as a special needs parent.

The things on this list aren't about the grand lessons about life and loving and they aren't about patience and stamina. They are the things that no one tells you that one day you'll appreciate. Well, they are the things I appreciate anyway...

1. I'm thankful my kids take pills and we don't have to depend on those stupid compound liquids. Only refrigerated, sticky when they spill, with sugar incrusted caps and I'm thankful we don't have to carry small coolers and ice packs and wet wipes with us when we're out of the house at a meal time.

2. I'm thankful for jeggings -- jeans and leggings. No buttons, snaps, zippers. My kid can fit in with her peers without having to ask a teacher to button her pants.

3. I'm thankful for front office people in medical offices who smile.

4. I'm thankful for Goober Peanut Butter -- it's premixed and saves time and has protein. 

5. I'm thankful my kid can read a book on his own 6 years after learning to read.

6. I'm thankful for no-tie shoe strings.

7. I'm thankful the kids don't throw-up in the car very often.

8. Fax machines (for referral forms and such).

I do like celebrating Thanksgiving Day but honestly I feel like I'm thankful all year for the big things and the little things.

 

I do in fact get a lot of "Are you the real Julia Roberts?" when I'm on the phone. I'm not. I love diet coke, I'm a night owl and collect vintage photos. I blog at Kidneys and Eyes and am co-founder of the social network, Support for Special Needs. If you tweet, I'm at JuliaRoberts1.

 

 

Thursday, November 24, 2011

We had the same ache in our hearts

I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to our son Ben’s genetic condition early on.

We had the same ache in our hearts
By Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

"XXXX off," I screamed.

Ben, as always, was at the centre of our relationship.

My daughter Lucy, now eight months old, lay behind us, sleeping peacefully in her car seat.

It would have looked comical, if it wasn't so sad.

I felt hopeless.

Feb. 1, 1997

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.


D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to LGS. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.


When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

“Oh Darcy!” I said.

“Then I started to cry,” D’Arcy said. “So she told me I could stop.”

"I'm so sorry," I said. And I knew he had the same ache in his heart.

Louise Kinross produces BLOOM, a magazine on parenting kids with disabilities at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

Tuesday, November 22, 2011

"Thankful"

Sometimes being thankful hurts.  Let me preface this passage with a disclaimer—if you are looking for syrupy sentiments of cheer to fill your heart with joy might I suggest the Hallmark store.  That just isn’t how I am feeling right at the moment.  

Thanksgiving has become a bittersweet holiday in our home lately.  Our children—especially B.—aren’t exactly the most welcome family members at festivities.  In fact, this year I had just set my plans on auto-pilot…we would stay home and if anyone deemed to visit the second class grandchildren, it would be after the big day.  (Gives new meaning to the term “Black Friday.”)   I had a small, intimate plan for the 4 of us that included chicken nuggets & BBQ sauce for C. and plenty of DVDs for B. since that is the tradition in our home.  My husband and I would enjoy the usual meal with our own spin.  There would be the predictable phone call where my children were supposed to feel love via the phone line instead of in person.  Such is the live of a family when Autism is the unwelcome guest at the dinner party and discreet discrimination begins with family.

So, I wasn’t overly excited when I was told that my parents would be joining us on Thanksgiving.   I’m happy that my children will see them ON the day like many other lucky and blessed children around the country.  However, there are reasons why they are coming that have more to do with guilt than actual joy in spending time with my children.  Also, they are bringing their favorite grandchild with them.  (Long story.)  So, my children will once again get the pleasure of playing second class citizens albeit in their own home this year.  Oh, my parents will be there…but their focus will be primarily on the perceived perfect grandchild and not on the ones who starve for attention.  Ironic that on this day of feasting, my children will still go hungry in a sense.

I think of all the families who are incomplete around our country—those separated by distance, economic woes, military deployment, broken families, the homeless and forgotten.  It hurts so much that there are so many people desperate for something to be thankful for on this day and throughout the year.  It hurts to think of how many of us—the American family as a whole-- have to endure this pain.  It hurts to think of how divided our country is over heavy-handed idealism that is crushing so many people for no effective reasons.  And then I look at the pain and division in my family and I literally have to force a breath into my lungs beyond the pain in my chest.  Why can’t my children be accepted and appreciated for who they are?  Why can’t my parents be thankful for them the way they are thankful for the others in the family?  And why do I let myself be exposed to this pain year after year hoping it will be different?

I told my husband that this year I will not hold my tongue.  I will serve up some acerbic comments along with the stuffing rather than hold my comments back.  I plan on being thankful for the children in my life even when there are times they drive me to my knees in tears.  I will be thankful for the fact that I am their mother despite my faults and failings with them.  At least I will go to battle with anyone for them, even my own family.  I will give my children the chance to be themselves when no one else will in quite the same way.  I will give thanks that my faith says God has a plan for them even when I question it to the very fiber of my being at times.

I will say a prayer of thanks for those who continue to make strides in the various areas of disabilities for their perseverance and fortitude.  I will pray for the memory of the parents who preceded me and others in the fight to have our children acknowledged, educated and provided with rights.  I will pray for those who can’t be with family on Thanksgiving and for those who overlook the family sitting down at the table.  I will pray that our military service people are kept safe and feel appreciated by a grateful nation. 

I will pray I survive the day with some sanity intact.  I hope your Thanksgiving is happier.

Saturday, November 19, 2011

'Tis The Season

The holiday season is upon us once again, which means Connor's grand Christmas tree obsession is once again displayed in full force.  Our local mall puts up 30 foot tall trees the week after Halloween, and Connor believes that we need to buy all of these trees and set them up in our living room so he can stare at them all day.  You can track our progress through the mall by sound alone; the closer we get to the trees the louder his excited shrieking becomes.

Connor has a love-hate relationship with Christmas.  On the one hand, he adores the lights, the music and of course the decorated trees.  But by that same token, all of those things are extremely overstimulating for him.  To a kid with sensory issues, the crowds, music blaring and blinking lights can quickly become a nightmare.  We do our shopping in about fifteen minute intervals; any more than that and he starts spiraling towards a meltdown. 

So when I take Connor shopping, we end up spending a lot of time hanging out in the bathroom.  It's a pretty ideal place for Connor to calm down; the walls are smooth and white, the music isn't piped in nearly as loudly and I can turn on a faucet to muffle it further if need be, and there are no flashing lights or bustling crowds.  When we go to a new mall or store during the Christmas season, the first thing I do is scout out where the restrooms are.  That way I can make a quick retreat there if Connor shows signs of becoming overwhelmed. 

Needless to say, we stay home on Black Friday.  I'm pretty sure we'd get there, run to the bathroom and never emerge.

I'll be doing as much of my Christmas shopping online this year to keep Connor out of the mall.  But we will make at least one trip there, though it probably won't be for shopping.  I've promised Connor we'll go and see the trees.

~Jess

 

 

Jess writes daily at her blog, Connor's Song.

Harmony

Some days, it is really hard to write.  There are thoughts swirling around my head that I can't seem to encourage down to my typing fingers.  Is this what it is for Pudding?  Having thoughts that you can't express?

I think perhaps I have writer's block.  So much is happening, but I can't write at all.  It plays over and over in mind.  I lack imagination.

After a year of blogging, the same themes crop up.  I type a post, then delete it entirely.  I've said it before; there is nothing new to put down.  But there is comfort in the familiar.  Those little captured moments that are nothing, but mean everything. 

Today we went out for breakfast, and Pudding finished first.  Unprompted she told the waitress she had finished and to "take away the plate please."  That has never happened before, yet it has happened all along.

Old bits of new.  I've written it before.  Singing the same tune.  My version of echolalia.

I'm busy now, wearing a few different hats.  Feeling like I can't dedicate to anything all that I should because there are other pressing deadlines.  I flit from one thing to another, never quite doing anything.  My play is not purposeful.  I'm hyperactive.

At social gatherings, my mind is elsewhere.  I should be making small talk, but remain silent.  It gets too fast-paced for me and I want to shut out the world.  Aloof.  Uncommunicative.

When I do snap out of my reverie.  When I do enter into a conversation, how long before I manage to bring it around to my topic of interest?  Not long.  I'm perseverating.


I've spent all this time trying to understand her, completely missing the fact that she is just like me.  I find so many similarities between Pudding and the little girl I used to be.  Not so different after all.

She is here at my side as I type, so I hurry to finish.  Just as I find myself in so many ways entering her world, she wants to enter mine.  She is engaging me.  So I'll leave this post unfinished, because everything that I've ever written about is happening right now, and I don't want to miss any of it.

I ask her what she wants to do.  Sing!

So the two of us will leave our respective little worlds, and join together in our off-key harmony.

 

Spectrummy Mummy likes to write about nothing at her blog, whenever time, and her kids, and all those other distractions allow it.


Friday, November 18, 2011

Blue Twos

I met V. when Rojo was three and Woohoo was five. V.’s daughter, B., was in Woohoo’s tiny afternoon kindergarten class, and soon we all became friends. V. got to know our extended family and we got to know hers. On days her work schedule precluded her from picking up B., V.’s sister did. At the time her sister was single and childless, and a practicing psychologist (that nugget just makes the story that much better).

My mother-in-law gave Rojo a dog costume to wear for Halloween that year, it was one piece, soft, had a hood with cute little ears and was more like wearing pajamas than anything else. Rojo adored it. Rojo wore it and wore it and wore it. When it was dirty and in the wash, it was a problem. He wanted to wear the dog costume every single day and twice on Sundays. The boy wore nothing else, and when it became too small we put his arms in it, only, and he trailed the rest behind him like a cape.

One day after kindergarten V. came up to me laughing, “My sister was asking me about you, she said, ‘Who is that lady that makes her son wear a dog costume every day?’” V. got it and knew that some day in the future, her sister would, too.

That same sister went on to have a son a couple of years later and then twin daughters. I’ve lost touch with her, but I’m certain, “typical” or not, her children have shown her why I “made him wear a dog costume every day.”

This was also the peak of Rojo’s Blue Twos phase. (For those unfamiliar with this L-O-N-G phase, Rojo was 100% obsessed with license plates and their expiration stickers. We were constantly on the look out/hunt for blue twos. It’s fair to say our entire lives revolved around them for years. The original title of my memoir about him was Blue Twos.)

Eventually Woohoo and B. evolved into different friendship circles, and I saw V. less and less. Then Woohoo and B. went off to different high schools and I hadn’t seen V. since, until last week when I was having lunch with, ironically, the recently retired kindergarten teacher, and who should walk in but V.? Turns out she was doing an errand in a nearby store to where we were having lunch, saw my car in the parking lot (just one of the many perks of having a distinctive AND old car), and went in every single shop and restaurant until she found me.

It was great catching up, and we learned both B. and Woohoo want to go to the same college. Caught up on her, her kids, her husband, her sister, her sister’s kids, her parents, all the rest. As she was getting ready to leave she said, “ You know, B. and I still look at license plates and shout out, ‘Blue Two!’ when we see one. How IS Rojo?”

I told her all about him, how great he’s doing, how happy, how I wrote a whole book about him and almost named it that, on and on. She was so genuinely happy to hear that. Happy, but not surprised. She saw his pure essence then and never had any doubt he’d be fine.

I guess it’s all a matter of defining “fine.” Cured? No. Typical? No. On track to graduate from high school and be independent in the world? No. Happy? Yes. Joyful, even, YES! Ego-less? Yes. Pure as the driven snow? Yes. Here to teach? Yes.

Yes, he’s fine.

Thursday, November 17, 2011

So Far Away

It was just a phone call.  But it opened my eyes to so much more.

My husband is away on a business trip.  It's not his first one, but it's the first time he's been away for longer than a few days.  We had prepared the boys as best we could - showing them where China is on a map, tracking his flight on the iPad, and counting down the number of "sleeps" until Dad is home again.

My oldest and youngest seem to be doing okay with it.  It's clear they miss their dad, but they are understanding that it's temporary and he'll be home soon.

My five year old?  Not so much.

He's having a hard time.  Very hard.  It's coming out in his behavior at school and his sleep problems have returned. 

In his head, mom does certain things (fetches juice and goldfish and gives squishy hugs) and dad does other things (runs around the house with him and makes hot wheels tracks).  The two cannot mix.  And no social story, or pre-teaching, or anything else can help him reconcile this.

Two nights ago, he was talking on the phone to my husband.  Begging him to come home.

"Just tell the pilot to bring you home now.  Why can't you transport yourself here?  I miss you, Daddy."

I got back on the phone with my husband and I could hear the pain in his voice.

"I don't know how J. does it, being away from your kid for so long.  It's hard enough for this week.  I can't imagine being deployed for a year or longer."

J. is my friend's husband who is currently deployed in Afghanistan.  He's serving our country while his wife and her young son are home. 

Right then I knew we had to do more to support them and families like them.

You see, while my husband is away for a week, I have all the supports at home.  His insurance covers home ABA therapy, so my son's therapist has been here three out of the eight afternoons that he's been gone.  My son is in a full day kindergarten program with a one-on-one aide.  I have family and friends here to step in the moment I need them.  I can talk to my husband every night and day on the phone and e-mail and text with him during the day.  My kids can see his face through pictures and skype.  For free.  My husband doesn't have to worry that our doctor's bills are not getting paid, or that we're skipping a therapy session because we've run out of money.

I don't have to worry that my husband might not come home.

Our servicemen and women - and their families - don't have that luxury.

We need to fix that.

The Office of the Secretary of Defense for Health Affairs indicates that 1 in 88 active duty military children is diagnosed with an Autism Spectrum Disorder (ASD). Combined with retiree dependents, there are 22,000 military kids with autism. The number is probably much higher than that.

Currently, the military insurance (TRICARE) segregates proven autism therapies such as Applied Behavior Analysis (ABA) into a separate arm of care called the Extended Care Health Option (ECHO) and places a dollar cap on ABA.  This essentially limits the number of hours per week to less than half what is typically recommended for a young child newly diagnosed. Months to years are lost navigating through these processes. (from the website Caring for Military Kids with Autism Act)

Does that sound fair?  Does it seem right that the people who are putting their lives on the line for our country can't count on their children getting the help they need at home? 

It doesn't to me.

Currently, there is federal legislation pending that can help our military families get the supports they need. The Caring for Military Kids with Autism Act eliminates the dollar cap on ABA while also removing barriers to care by providing ABA under the umbrella of TRICARE Standard care. It also extends these vital services to the dependents of retirees who have made a career commitment to our nation’s freedom and security.

But the bill is buried in committtee and lacks the support needed to get it out to a vote.

That doesn't seem right to me either.

So what can we do?

We already know that as a special needs community, every voice matters.  When parents, grandparents, aunts, uncles and friends speak together as one voice, things get done.

This needs to get done.

Visit the Caring for Military Kids with Autism Act official website at http://cmkaa.wordpress.com/support-cmkaa/.  Check the list to see if your Congressional representative has already signed on as a sponsor. 

If not, send them a letter and ask them why not.  Sample letters are available HERE.

If they are, send them a thank you letter and remind them why this bill is so important.

And give them a call too.  Make it personal.  Give it your voice.

**********

It would be nice if there was some special needs bank.  When you're given your diagnosis, you're handed an ATM card.  Take out what you need for therapy, services, help and hope.  Coverage for vital services for our kids shouldn't depend on where you live, or your income, or your job.  All of our kids deserve to get the help they need when they need it.

And most certainly, our servicemen and women and their families need it now.

Let's show their kids that we support them here when their moms and dads are so far away supporting us.

"So far Away
Doesn't anybody stay in one place anymore?
It would be so fine to see your face at my door
Doesn't help to know that you're just time away
Long ago I reached for you, and there you stood
Holding you again could only do me good
How I wish I could, but you're so far away
" - So Far Away by Carole King

 

Wednesday, November 16, 2011

That Thing I Don't Talk About

I pull into the driveway and glance up to my porch.  In front of the door sits a big brown non-descript package.  There could be ANYTHING in there.  A surprise!  Each month I indulge my fancy and play the part of someone who does not already know what she will find when she tears the packing tape off and unfolds the flaps.   I try my best to conjure the limitless expectations of Darren McGavin’s character, Ralphie’s dad, in A Christmas Story as his “major award” is delivered.  It’s here, it’s here!  Some days I even tap my fingertips across an invisible word on the cardboard and slowly, profoundly emulate his wishful interpretation of the letters, “fra GEE lay.”  The irony is that though the box doesn’t actually bear such a stamp, my forehead could easily read “fragile” at such moments.

Upon my first kick-shove of the box into the front door, the game ends.  For I know what it is.  It came last month and the month before.  It’ll come next month.

It is nothing so fantastic, light and burden-free as a leg-shaped lamp.

Sometimes I let it sit just inside the front door where I won’t often pass it.  I pretend that it’s too bulky for my short self to carry downstairs and dispatch into its storage space with what’s left from the last box.  Rare are the times it doesn’t send me to such willful denial of its existence that I’m rendered unable to spirit it away in the name of tidy, objective detail management.

Today I let it sit.

This box changes nothing, adds nothing, promises nothing.  It’s not a surprise for my girls; it’s nothing for me or for my husband, our house or our cars. It’s not full of gifts I’ve carefully picked out for others.  In fact, we have no choice at all in this.   It’s delivered for the cognitive and communicative differences, low muscle tone, sensory issues and motor processing problems that conspire to make this box a requirement on a monthly basis.

Inside are purple-wrapped cubicle stacks from the medical supply company for my 8 year old with Rubinstein-Taybi Syndrome.  The customer “care” reps at the company are sticklers about calling them incontinence products.  The generic looking logo on the package demurely refers to them as pull ups.  But I call them what they are: diapers.

Diapers have been in our lives for more than 12 years, with a brief respite of about 18 months in there before my younger daughter was born. I have only 2 kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in quantity, duration and effort.  But from the very beginning she had a general idea of when it would end.

It’s the fact that there is no clear path to the end that makes it daunting.  I have long ceased finding the act of doing the changing particularly inconvenient when we are at home. It’s just part of everything now.  But the ways we have to consider her dignity, her privacy -  who knows, who doesn’t know, who might mention it around whom – that is what’s exhausting now.   Energy further evaporates when I inevitably wonder if we’ll still be managing these things a decade from now, 2 decades, 4…

We grapple with the few scant invitations and social engagements she gets, wondering how we can figure the logistics if she needs to be freshened.  When we visit other homes, I measure how long we’ll stay by whether the host is likely to be able to discreetly handle my request for a plastic bag and to know where the outdoor garbage receptacle is without asking too many questions. We size up public restrooms, worrying about space, germs and location of waste bins.

Low rider pants are a bane when you have a child who employs a sensory satisfying stance of a tripod - hands and feet near each other on the ground and her derriere airborne.  The slippage of her Levi’s partners with the impossibly high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of mystery.

You can’t chat about this with your family and friends.  Even my friends within the disability world, we guard our child’s dignity and our own fragile case we keep some things in, and we keep quiet.  I can’t bear to hear the earnest suggestions of others, thinking I’d never considered the techniques used with my older daughter, thinking perhaps the problem is that I have given up.  I haven’t.  I believe in my heart of hearts that it will happen one day.  Whether that day is weeks, years or decades from now is the question.  The blithe statement mothers of preschoolers offer mothers of toddlers sends me to a place I don’t like to spend too much time in.  “Well, don’t worry, it’s not like she’ll go off to college in diapers.”  It’s possible.  A kid could go off to college in diapers.  If that kid would be accommodated in college, that is.

There are worse things, yes.  But it adds a daily layer of complication and general hope-suck that compound the energy-devouring effort already put into every single detail of this disability life.

This is just so incongruous with who she is, how clever she is, what a social, complex, witty, inquisitive, powerful young lady she is.  Whether we want to admit it or not, knowing someone wears diapers whether as a result of being very young, very old or very different, it simplifies that person in most people’s eyes.  It reduces them.  Her dad, her sister and I are in constant combat with this reduction of our limitless girl every single day.

There it all is, laid out.  I cross my fingers for her dignity, that you who know her and read this will protect it as you would her physical being.  I cross my fingers that the combination lock requiring so many developmental mysteries to align just so, clicks and pops open one day.

I cross my fingers for a porch void of anti-surprise packages.

http://farmerjohncheeseandotherjoy.blogspot.com/

Monday, November 14, 2011

The LRE Question

Least restrictive environment (LRE) is one of those special education catch phrases that special needs parents learn early on. More and more, special needs kids are being put into mainstream classrooms, many with supports, to learn alongside typical kids. My son is among them.

For the most part, I've been a believer in LRE. I always say that my son has to live in a mainstream world, so it's best for him to learn in a mainstream classroom. Yet recently, I've started to wonder. I've started to see the third grade curriculum in his inclusion classroom butting up against his autism-specific deficits and I wonder if it's time to move him to an environment where the teachers are trained to teach kids whose brains work similarly to my son's.

Still, I'm torn. I love the way that being in an inclusion classroom not only teaches my son, but also spreads awareness to teachers and the other kids in the classroom. I have seen the positive effects that can bring. But I also know that I can't sacrifice my son's education and well-being in the name of awareness.

My son's brain makes it difficult for him to master inferential reasoning. His concrete thought patterns make it harder for him to grasp the more abstract math that third grade brings. His social deficits are becoming more and more obvious as the years pass. 

Maybe a self-contained classroom can give my son a solid base from which to then enter the mainstream world. Maybe our social lives are inclusive enough that he will be okay without being schooled that inclusively. Maybe we can spread awareness other ways. Maybe my kid would be less likely to be bullied in a classroom full of quirky children who think as he does and who like similar things. Maybe, in a self-contained classroom my son would find his people.

Or am I just giving up? Should I assume that he will rise to the challenge of the inclusion classroom? Can I count on the simple fact that he is smart to get him to where he needs to be? Can we tweak his IEP and classroom expectations enough that he can make it in mainstream school?

Here's another thing: This year, my oldest son moved from our neighborhood school to a highly gifted program at a different school. His new class isn't an inclusion classroom, yet no one batted an eye or brought up the idea of LRE when we were making our decision to send him there. He just got congratulations for testing well and getting good grades. We were encouraged to send him to this new school because he would be around other kids who thought like him, whose brains worked like his does.

How is that different? Is it because gifted is seen as a positive and special education is not? And why do we have these assumptions?

There are so many kinds of self-contained classrooms. I am just starting to explore what our district offers. I'm asking some exploratory questions of our IEP team. As I do, these questions roll around in my head. These decisions are so very difficult. The problem, of course, is that there is no right answer.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.

My Weekly Hopeful

I was recently invited to be a part of an ongoing email thread with some friends. There are seven of us. We each have an assigned day and on that day we write what we are thankful for that week. Sometimes we also write what we are not thankful for. The idea is that, with all the challenges of parenting, sometimes we need to stop and remind ouselves to be thankful, even if it is just for the basics: food to eat, a job to pay the bills, or that we are here to see another day. (I, of course, immediately tried to convince the group to turn this into a blog.)

This email has been going on for some time now, although I'm not sure for how long. I was only recently invited to join the group. This summer we lost a member of our mom's group to cancer, and I'm pretty sure she had been the seventh member. It feels awkward to me to take her place in the group, and of course I was a little hurt that I wasn't invited in the first place. But I am happy to be included now.

It has been like this with me and this group of moms for a few years now, ever since Moe's autism diagnosis. When Moe turned two, we had to drop out of our regular play date to make time for Moe's therapies. And Moe couldn't keep up with the new kinds of activities the group was taking on, even at that age. I still keep in touch with the other moms as much as I can, go to nights out and other kid-free events, but I always feel just a little bit on the outside.

Still, I am glad for whatever connections I have, as being a special needs parent can be such a lonely experience. And so I participate in whatever I can, thankful that these moms still remember to include me, the one who often can't make it, has to cancel at the last minute, and very rarely thinks to plan anything.

In the spirit of those emails, I thought about writing a thankful post here today. But since this blog is about hope, here are a few things I'm hopeful about this week.

I am hopeful that Moe will learn to communicate with me in whatever way he can.

I am hopeful that Moe's additional behavior therapy will teach us both the skills we need to be safer and enjoy each other more when we are out.

I am hopeful that I will finish my novel for NaNoWriMo this month!

I am hopeful that a new friendship with another special needs parent will continue to grow.

I am hopeful that things will get easier.

What are you hopeful for this week?

When she isn't busily trying to write a 50,000 word novel in 30 days, Jen also writes at her personal blog, Anybody Want A Peanut?

Sunday, November 13, 2011

Prom

I like to think of myself as the kind of special-needs parent who's developed a strong sense of what's important and what's small stuff not to be sweated. I don't want to waste my time mooning over my children's lack of typicality when they're doing such amazing things with the abilities they've got. I know a lot of parents find it useful to grieve for the children they might have had and mourn the death of their dreams, but that's not me. Maybe because I adopted my kids knowing they had special needs, I've never any illusions to be shattered.

And yet, it's hard to deny that some mainstream milestones have an emotional pull, even as I understand their insignificance. Right now, I'm fighting not to be seduced by prom.

Truly, truly, I say to myself, truly I don't care if my kids go to their senior prom. My daughter missed hers, and was enormously not disappointed by that, so why should I feel sad? It involves many things she hates deeply: wearing a dress, wearing a fancy dress, getting a hairdo, putting on makeup, wearing high heels, being a girly girl. I tell myself that my sadness for her is not over the lack of a prom experience, but the fact that she didn't have a group of friends who would persuade her to go. Prom itself? Pish! An expensive evening of not much fun. 

So now it's my son's turn to be a senior, and why on earth would I want him to go to the prom? He and a couple of friends went to the junior prom and hated it so much they called us to come rescue them. The big, expensive senior version? Does not sound like a fun night. Chances are high that, once the eating part was done, he'd be on the phone again, asking to come home from the pricey evening in his pricey tuxedo. It would make so much more sense to take the money that prom would cost and spend it on something he and his friends would actually enjoy. Heck, half the money that prom would cost could buy them something they'd enjoy.

And yet ... there's that pull.

Unlike my daughter, he does have someone he could go with, a female friend who, although the big event is most of a school year away, has already made it clear that she would really like to go to the prom. I should be telling her mother no, no way, bad idea, disastrous evening ahead. I should rescue him from those expectations. That's the kind of thing I do every day, keeping it real, assessing risks and rewards, setting up for success, changing the environment. Prom is a problem-rich environment if ever there was one. The practical, realistic, celebrate strengths mom I like to be knows it's a ridiculous thing to consider, and it's not like he's the one who's dying to go.

But secretly? The thought of my boy doing something as ragingly typical as going to the prom? Is thrilling.

If only I could believe it was more about him than about me.

 

Terri Mauro blogs at About.com Parenting Special Needs and Parenting Isn't Pretty. She has two terrific kids, a 21-year-old with learning and language disabilities and an 18-year-old with FASD, both adopted from Russia in 1994.

Saturday, November 12, 2011

Sensing his struggle through mine.

The past few weeks contain the most surreal moments of my life. I recently underwent surgery for breast cancer, having a bilateral mastectomy with reconstruction. That means I’ll have a new chest in about a year, but they got the process started by implanting tissue expanders. It has been a slow recovery made stressful by the fact that my 6-year-old son Ethan (with autism) has been coming undone with the change in his routine. I’ve been unable to be in the driver’s seat and he’s used to me running the show. My husband travels for a living and was able to take some time off, but the endlessly revolving door of family and friends has really turned things upside down for our son. He has responded with a dramatic increase in number and intensity of meltdowns. He has been aggressive, which just keeps me further away as none of us can afford for me to have a setback. This week I think I turned a corner; I’ve been using my arms more and have been gradually more involved in his care and everyone has noticed a similarly gradual decrease in Ethan’s behaviors and anxiety. 

There have been many illuminating moments during this process, but the one that has the most meaning is the time I spent in post anesthesia recovery. I’ve been through this process with Ethan several times and it’s almost always very stressful. Fortunately for everyone involved, the hospital we use has flagged him in the system as a child who needs extra hands on deck during this time. Now that I’ve been through that experience, I can better relate to what it must be like for Ethan. 

 I remember opening my eyes momentarily before asking the nurse to cover them. The light was so intensely bright that it actually hurt. I was incredibly nauseated but had great difficulty telling my nurse since the breathing tube made my throat too sore to speak. I remember whispering it to her with the hopes that she heard. A few minutes later she asked me if I was still nauseated and since I was, she told me she’d increase the anti-nausea meds. I have never been thirstier in my life! I whispered this to her several times and all I could get out of it was the occasional ice-chip. Apparently I was too nauseated to be trusted with a drink of water and the ice-chips didn’t do the trick. I could hear a woman nearby moaning and saying repeatedly “I feel awful!” which really irritated me because I was busy trying to meditate myself out of my thirst. It truly was a very difficult time and all I could think about was getting to my room, seeing my family, and getting a tall glass of water.

I had the ability to reason my way through that experience and talk myself through the tougher moments. Ethan does not. I was able to communicate my discomfort to the nurse and have my needs met; Ethan is not. The experience really opened my eyes to what he has gone through countless times in his short life. He has a fairly big surgery coming up after Christmas and this time I hope to be there with more clarity and purpose than ever before. 

Friday, November 11, 2011

Nobody Ever Said It Would Be Like This

Ok, I think, I hope,   I’m really back this time.  I missed last month due to complications from my daughter’s transplant.  This blog could also be called “Full Disclosure Please!”

Expectations vs. Reality
I thought “Ok my child will have surgery and everything will go back to normal after.”  Sometimes it happens, sometimes not.  My daughter was re-hospitalized after her transplant but it was only sort of related.  We’ve gone through multiple bacterial, viral, and fungal infections due to her suppressed immune system and sometimes all three at once.  She’s also had problems caused by medications (e.g. antibiotics for bacterial infection cause fungal infection or even cycling back and forth).  

What Can Families Do When Things Don’t Go According to Plan
Plan?  You mean there’s a plan?  Actually there should be a plan, and a “Plan B” just in case.  Parents should have the information they need to care for their child at home after hospitalization.  Even during hospitalization, ask what prescriptions your child is getting instead of waiting til you get the list to go home.   I might have been able to say “Be careful with the antibiotics or add an antifungal agent because my child had a systemic infection that took a year and a half to go away.”  Find out if meds. cause side effects.  We even had to give our child a new med. to counter the nausea caused by another med.  Also, if you child has other issues such as high blood pressure, thyroid disease, diabetes, cardiac problems, cholesterol, etc. check if meds. can make these worse.  You may even have to switch meds.   The hospital gave us a factsheet on each prescription before we left which included “when to call the doctor.”  A great resource is the PDR (Physician’s Desk Reference) listing medications and side effects.  

Complications, etc.
Sometimes besides obvious medication side effects, other conditions may surface.  Even if your child may not have had a condition like high blood pressure, sometimes meds. can cause them.  You’ll need to ask your child’s doctor and monitor carefully.  Remind providers at each visit if your child has medication or other allergies.  We do daily vitals (weight, blood pressure, temperature) which we show the hospital weekly.  We also track when her next labs should be (e.g. one condition needs to be checked biweekly).  It’s also important to ask generally what to look for and to expect.  There’s a virus that only 8% of transplant patients get so OF COURSE my daughter has it.  She’s now being checked for a second condition that only 10% get.  (I wonder what Mr. Spock would say are the odds of having both?)  So although you don’t want to go looking for trouble, it’s good to know what could happen (if it won’t keep you up at night).  One of the things I try to avoid is “catastrophic” thinking such as “what if”.  I deal with what is.    

Insurance -Again
I was surprised that my daughter’s tests were being delayed not because of hospital scheduling but due to insurance approval.  If you have problems with insurance, call Family Voices, which is free help from other parents of children with special needs.  You might have to keep calling the hospital to make sure they follow-up because they won’t schedule it otherwise.  It also makes it easier to plan your work schedule…



Work and Planning
Well, we were supposed to be going to Children’s Hospital every 2 weeks starting in August, then once a month starting in December.  As I write this, it’s October and we’re still going weekly.  And we both work.  I’m grateful that I have flexible hours because otherwise I would be unable to work.  My husband’s employer gave him the flexibility to work four 10 hour days.  One thing other parents can do is use the Family Medical Leave Act which can be “intermittent” (e.g. a day here, a few days there), instead of all at once.    

Here’s hoping things get back to what passes for normal around here soon!

Resources:
Physician’s Desk Reference (medications)
www.pdrhealth.com

Family Voices (free health help for families)
www.familyvoices.org

Family Medical Leave Act
www.dol.gov/dol/topic/benefits-leave/fmla.htm


Remain Hopeful (with a capital H),
Lauren

Making Wishes

Last night Sylvie’s twin sister and I were talking about why Laura Ingalls Wilder’s sister, Mary, couldn’t go to school.  We’ve been reading The Little House on the Prairie series before bed for months now.  We’ve gotten to the part where Mary is blind due to scarlet fever that hit the family while they lived on Plum Creek.  It was unimaginable to my daughter that Mary could no longer go to school, just because she was blind.  Imagine if Sylvie couldn’t go to school, just because she cannot walk or talk.  Yes my child, imagine......

The New York Times has been running a series of stories on adults with disabilities that has caused my heart to shutter.  Last week an exposé reported the alarming rate of people with disabilities that have died unexpectedly in New York group homes.  The front page story today was about a couple--both with cerebral palsy--who got married against their family wishes.  The man in the story survived being institutionalized at “Willowbrook, an infamous dungeon for the disabled on Staten Island [NY].”  I feel sick to my stomach when I read stories like this, because I know if my daughter was born in another time or place, she too could be left alone in a raising tub of water or be strapped down to her bed.  Due to her disability and life threatening disease, she could be considered a “throw away” to society.

But our daily reality is very different from these dismal portrayals of disabilities.  I know there are lots of reasons people put their family members in institutional care, but I cannot honestly imagine anyone caring or loving my daughter more than her own immediate family and community.  This week brought that home to me as we met with Sylvie’s educational team due to their concerns about a recent cold/fever she had. The team is being so careful at kindergarten--they want Sylvie to be included and safe and attended to well.  The team also needed some assurances that they were doing all the right things to keep our daughter comfortable as she wheezes, chokes, snorts and sneezes her way through the day.   For my daughter, catching a cold could literally be the death of her.  I am truly touched by how concerned they are, and I know that both of my daughters are well cared for by the school.  

We also are living in a time when organizations, such as Make-A-Wish exist.  While I’ve previously written here at Hopeful Parents about my hesitancy to be a recipient of any type of “charity”--I am grateful for the many agencies and social workers who have tried to make our lives a bit less stressful. And I’m also grateful that there is some effort not to pity our family.  Case in point....  Thanks to our local Make-A-Wish chapter we’re getting a huge family soaking tub so Sylvie can take warm baths with her family and relieve some of her hypertonia and scoliosis.  As we soak in that tub that is to be installed next week, Sylvie and her family will draw up a big warm bubbly bath and keep wishing that a cure for Krabbe disease will happen soon.

Thursday, November 10, 2011

Autism’s Little Gifts

For some time now, I have been in a fairly negative space about my son Jacob’s autism. I am feeling worn down by the unending nature of it all, the intensity of my nine year old son’s needs, especially in comparison with his typical(-ish) becoming vastly more independent twin brother. But as this community is called “Hopeful Parents” and not “Cranky Whiny Parents” I don’t want to bring that negativity here.

So I thought I would take a moment to share 3 positive things that my son Jacob’s autism brings to the table. These may be small, even trivial things (and some seeming contradictory, the positive side of a presumed negative trait) but small gifts are still gifts, nonetheless. And I would rather focus on being grateful than serve you another round of complaints today; tip the scales up instead of down.

So here is a short list of some of the gifts Jacob’s particular flavor of autism has bestowed upon him and us, his family.

1. Jake’s obliviousness has some decidedly useful aspects. Last night I banged my elbow, HARD, holding open the bus door as Jake disembarked (I have definitely done some damage as it still hurts badly today). As I stepped off the bus and literally jumped up and down and then leaned on the bus stop wall as my knees buckles with the pain, I DEFINITELY let loose a stream of words Jacob should not have been hearing.

If it were Ethan with me last night? He would have been cackling with delight. I would now be hearing no end of his having caught Mom cursing, and furthermore he would likely be telling everyone all about it, outing me to the other moms in the schoolyard this morning. 

But Jacob? He didn’t notice the salty language one bit, offered me nothing but sympathy: “Mommy, do you have an owie? Are you OK? You need a band-aid, Mommy!” and patted my back, kindly. (And anyone who says autistic kids have no empathy can suck it.)

2. Jacob loves the movies so much he will see ANTHING. Ethan, on the other hand,  has a very short list of what he will watch and it has to fit into his idea of “male” and “Big Kid / Teenage-ish” and that is that.  But Jacob? While there are some (heavily advertised) kid movies he begs to see - and we do - he is perfectly happy to sit through pretty much anything in a movie theater, as long as there is popcorn and he can stay through the very last end credit. 

This means if I have dropped Ethan off on a playdate and there’s a vaguely-appropriate-for-kids movie I want to see (rated PG13 or below), I can bring Jake with me and we will both be very happy.

3. Jacob doesn’t judge people. He has no notion of race, of class, of “cool” and “uncool.” He notices that people are different from each other, but it is interesting to him the way the difference between two flowers would be interesting: the facts, no values attached.

The other day he asked a boy with a port wine stain birthmark what was on his face, and thank goodness that boy understood that there was no meanness in the question for Jake, just curiosity. So the boy answered in a very straightforward manner that it was a birthmark and had been there since he was born, just a part of him. And that was it for Jake. Question answered. Let's play.

And that’s it for me tonight. Three little things I am grateful for. I’m sure there’s more. But I have to go ice my elbow now.

Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.



Sunday, November 6, 2011

A Gigantic Birthday Adventure...

Today is Billy’s 8th birthday. We are on the road from Phoenix to Disneyland (via The Living Desert in Palm Desert, cos it ain’t a good day in Billyworld without four legs, fins or fur).

We are on A Giant Adventure, having flown across the Pacific to California (from Sydney, Australia) and our autistic boy is taking it all like a champ.

In the past week, this child has flown for 14 hours (yes, 14 hours straight), seen five animal parks, bought five new plush animals (an ocelot, a fennec, a killer whale and two okapi), eaten a side order of bacon at any number of Denny’s/IHOPs and generally sucked up a bunch of stuff he shouldn’t even be able to contemplate. (Can you say Outlet Shopping?)

He woke up this morning, excited to be eight, concerned there would be no birthday cake (thank you Disneyland for pulling us out of that hole) and generally excited for a new chapter to the Adventure.

Despite the scripting, the endless crashing into soft things and the ever present ear protection, we have to remind ourselves he’s autistic. He’s supposed to be rigid, right? He’s supposed to love routine, and hate change. He’s supposed to… blah, blah, blah.

I know all kids are different, and all autistic kids are especially different but, seriously, he’s giving this whole holiday chaos theory a red hot go.

The other amazing thing about this trip is that I have been able to, and will be able to meet a bunch of women who have helped get this child to 8 years old in one piece. These are women I have met online, in the least creepy way possible – people like us – parents raising a child with special needs.

They have been in my life since Billy was just over one year old, when he lost his precocious language and started carrying the same green cup everywhere he went. They have listened, and answered and questioned and shared the highs and the lows. Online, they have felt like sisters for all this time.

Here’s the bizarre, post modern freaky part… so far, in person, they are just like sisters. Not in that, you-took-my-hairbrush kind of way. In a holy-crap-I trust-you-completely way.

I don’t want to jinx meetings that will take place in the near future, nor do I want to sound like a character in All My Children (handy, cos they’ve been cancelled, right?). However, I do want to somehow explain the oddly excellent ease that these women and I have found face to face. I mean, really… if you transferred this experience into another realm, it would be highly unusual. People who have one single thing in common, really, meet and feel an immediate bond. It’s the plot of a movie. An Anne Hathaway movie. Yet, I’m living it, and it’s a real life reminder of a couple of cool things (at least).

The first is that special needs in general, and autism in particular shifts your boundaries of ‘unusual’ around quite a bit. You spend a lot of time (or should I say, I spend a lot of time) in a principally NT world planning ways to explain our needs, decisions and peculiarities. Meeting other autism parents, especially ones that ‘know’ us already, there’s none of that backpedalling. Our kids somehow ‘get’ each other (and even if they don’t they don’t care much), and the adult starting point is absolute acceptance. That’s a really good feeling.

The other thing is something I’ve thought about, and probably mentioned before (my attention span prevents me from actually checking whether I am repeating myself). It’s the special needs chicken or egg question. Is there something that means excellent people get special needs children (beyond the platitudes), or does having a special needs child make you kind of excellent. I don’t mean Paris Hilton ‘That’s hot’ excellent, just open hearted, honest, positive excellent.

There are and will be many more things to report along this journey, but for now, I just want to say thanks. Thanks to America, thanks to the parents who share this road, thanks to Dennys who have good bacon and to IHOP for just being IHOP (are you listening, Australia? Pancakes. All kinds. All hours. It’s genius.)

This trip has given us all renewed faith. In a year when we had to take our fight for autism awareness as close to the courts as I ever want to get, we have been shown that the world really does get it. Our horizons have been broadened and our waistlines are following suit.

I mentioned IHOP, right?

Also, I want to say Happy Birthday to my boy. You have surprised, inspired and entertained us since you made your appearance. We love you to bits.

To anyone reading this, who is in the early years of a special needs journey, I hope you can feel the true and genuine happiness that Billy has brought to us. He is the best child, who shows me how to live my life, each and every moment.

Like this morning, when he informed me that ‘baby’ is out, and ‘buddy’ is in. Eight, huh?

A Gigantic Birthday Adventure...

Today is Billy’s 8th birthday. We are on the road from Phoenix to Disneyland (via The Living Desert in Palm Desert, cos it ain’t a good day in Billyworld without four legs, fins or fur).

We are on A Giant Adventure, having flown across the Pacific to California (from Sydney, Australia) and our autistic boy is taking it all like a champ.

In the past week, this child has flown for 14 hours (yes, 14 hours straight), seen five animal parks, bought five new plush animals (an ocelot, a fenec, a killer whale and two okapi), eaten a side order of bacon at any number of Denny’s/IHOPs and generally sucked up a bunch of stuff he shouldn’t even be able to contemplate. (Can you say Outlet Shopping?)

He woke up this morning, excited to be eight, concerned there would be no birthday cake (thank you Disneyland for pulling us out of that hole) and generally excited for a new chapter to the Adventure.

Despite the scripting, the endless crashing into soft things and the ever present ear protection, we have to remind ourselves he’s autistic. He’s supposed to be rigid, right? He’s supposed to love routine, and hate change. He’s supposed to… blah, blah, blah.

I know all kids are different, and all autistic kids are especially different but, seriously, he’s giving this whole holiday chaos theory a red hot go.

The other amazing thing about this trip is that I have been able to, and will be able to meet a bunch of women who have helped get this child to 8 years old in one piece. These are women I have met online, in the least creepy way possible – people like us – parents raising a child with special needs.

They have been in my life since Billy was just over one year old, when he lost his precocious language and started carrying the same green cup everywhere he went. They have listened, and answered and questioned and shared the highs and the lows. Online, they have felt like sisters for all this time.

Here’s the bizarre, post modern freaky part… so far, in person, they are just like sisters. Not in that, you-took-my-hairbrush kind of way. In a holy-crap-I trust-you-completely way.

I don’t want to jinx meetings that will take place in the near future, nor do I want to sound like a character in All My Children (handy, cos they’ve been cancelled, right?). However, I do want to somehow explain the oddly excellent ease that these women and I have found face to face. I mean, really… if you transferred this experience into another realm, it would be highly unusual. People who have one single thing in common, really, meet and feel an immediate bond. It’s the plot of a movie. An Anne Hathaway movie. Yet, I’m living it, and it’s a real life reminder of a couple of cool things (at least).

The first is that special needs in general, and autism in particular shifts your boundaries of ‘unusual’ around quite a bit. You spend a lot of time (or should I say, I spend a lot of time) in a principally NT world planning ways to explain our needs, decisions and peculiarities. Meeting other autism parents, especially ones that ‘know’ us already, there’s none of that backpedalling. Our kids somehow ‘get’ each other (and even if they don’t they don’t care much), and the adult starting point is absolute acceptance. That’s a really good feeling.

The other thing is something I’ve thought about, and probably mentioned before (my attention span prevents me from actually checking whether I am repeating myself). It’s the special needs chicken or egg question. Is there something that means excellent people get special needs children (beyond the platitudes), or does having a special needs child make you kind of excellent. I don’t mean Paris Hilton ‘That’s hot’ excellent, just open hearted, honest, positive excellent.

There are and will be many more things to report along this journey, but for now, I just want to say thanks. Thanks to America, thanks to the parents who share this road, thanks to Dennys who have good bacon and to IHOP for just being IHOP (are you listening, Australia? Pancakes. All kinds. All hours. It’s genius.)

This trip has given us all renewed faith. In a year when we had to take our fight for autism awareness as close to the courts as I ever want to get, we have been shown that the world really does get it. Our horizons have been broadened and our waistlines are following suit.

I mentioned IHOP, right?

Also, I want to say Happy Birthday to my boy. You have surprised, inspired and entertained us since you made your appearance. We love you to bits.

To anyone reading this, who is in the early years of a special needs journey, I hope you can feel the true and genuine happiness that Billy has brought to us. He is the best child, who shows me how to live my life, each and every moment.

Like this morning, when he informed me that ‘baby’ is out, and ‘buddy’ is in. Eight, huh?

Friday, November 4, 2011

Finding Peace

The other day I went into my old unused Snap fish account

While there, I came upon an old photoalbum  – from the time when R was 1 year old – and we were visiting another old friend of mine 

She has a beloved dog Abby, who is like her child- we would tease that R and Abby were cousins

Abby is all sweetness and  was really patient with R

R, in turn, was entranced by her- that January of 2006

But later that year, as he had a regression and went down the road that would eventually lead to  an diagnosis of autism, he began to avoid dogs 

Neither parenting nor suffering is a competition 

But I believe, that the subgroup of autie mums and dads, whose children had regression , have a very heavy cross to bear

( For readers who don't know  autism - there are some children who are born with autism.  Some other children develop typically and around 18 months of age have a regression into autism. And then there are some kids who are in between.  This topic also is fraught with controversy.  ) 

People talk about the loss of language in regression.

But it  is more than that

How does a child know that they should look at a camera – and then stop knowing that?

How do they stop knowing what their name is?

When do you realize that the best way to talk to your 3-yr old is to write to them, not speak to them?     

And how do they stop loving dogs?

This last bothered me most.

For I can deal with many things.

But for R to lose a source of joy?

That really hurt.

I  made peace with my new normal  

Surprisingly, found even more joy in this new life with autism, then life before

But, this one sorrow remained

Yet with time, this too is healing

Some of  this peace has come from reading Jill Bolte Taylor’s words in her powerful book “My stroke of insight."

In this book  she speaks of her stroke and her recovery

She writes

It was vitally important that I have…freedom to let go of my past accomplishments so I could identify new areas of interest.. I needed people to love me – not for the person I had been but for who I might become.

 

When my old familiar left hemisphere released its inhibitions towards my more artistic side …I needed by family and friends to support my efforts at reinventing myself. At the essence..I was the same spirit they loved….

I looked the same..but my brain’s wiring was different now as were many of my interests, likes and dislikes”

 I read (and reread) this. 

I make it my new mantra and try to dissolve this last bit of hurt

I put my arms around all of this new life and hug it close to me.

Who R is today and what matters to him, is much more important than who he was

If he is afraid of dogs today – then so be it 

( Abby understands, I think )

R's sweet spirit, his gentle heart

The way he is learning everything back  

Talking, playing, even posing for the camera

As I do his bedtime routine, he finds a cut on my hand and very concerned  kisses it better.

He settles on my lap with  request for a tight hug

Oh the joy of this child!

And I think, what's not to be grateful for?


The bend in the road is the end in the road....if you refuse to take the turn"

 

This post has been written by K Floortime Lite Mama. Her blog is at Floortime Lite Mama where she talks about her life, her charming son, autism and apraxia 

Wednesday, November 2, 2011

Finding the Sense in Sensory



She struggles to grasp it in her head
I struggle to hear her through tears she’s shed
A shriek or a scream not understood
Will she say the words? I wish she would.


Around and around in circles she twirls
A vortex brimming inside my little girl
She wants to hide, she wants to run,
She wants to play, but of touch she’ll have none.


The blanket is wrong, the light is too strong.
The sleeve is not right, the jacket’s too tight.
The button’s too small, the dress won’t fit her doll.
The buckle hurts, it’s the wrong color shirt.


She holds it all in at school and in play.
A charming girl, sweet, compliant all day.
She wants Daddy, she wants Mommy.
Once home, comes forth the emotional tsunami.


Strategies, methods, behaviors and training,
On top of us all, this torrent is raining.
We breathe, count to three, or ten, sometimes more.
She curls up fetal, there on the floor.


What to say, what to do, how to offer solution,
to clear away the neurological pollution?
How will we know when our words reach her?
What triggered this meltdown, and how can we teach her?


Every day I wake up feeling tense and wary
of the burden within her and what she must carry.
It pains me to see her so wrought and so coiled
And I hope every moment her demons I’ll foil.


And when those moments arise with her smile
I let go my breath and know for the while,
I can watch her at play, at rest and at sleep
‘til the storm returns and over us sweeps.


Tuesday, November 1, 2011

Finding the Sense in Sensory

She struggles to grasp it in her head

I struggle to hear her through tears she’s shed

A shriek or a scream not understood

Will she say the words? I wish she would.

 

Around and around in circles she twirls

A vortex brimming inside my little girl

She wants to hide, she wants to run,

She wants to play, but of touch she’ll have none.

 

The blanket is wrong, the light is too strong.

The sleeve is not right, the jacket’s too tight.

The button’s too small, the dress won’t fit her doll.

The buckle hurts, it’s the wrong color shirt.

 

She holds it all in at school and in play.

A charming girl, sweet, compliant all day.

She wants Daddy, she wants Mommy.

Once home, comes forth the emotional tsunami.

 

Strategies, methods, behaviors and training,

On top of us all, this torrent is raining.

We breathe, count to three, or ten, sometimes more.

She curls up fetal, there on the floor.

 

What to say, what to do, how to offer solution,

to clear away the neurological pollution?

How will we know when our words reach her?

What triggered this meltdown, and how can we teach her?

 

Every day I wake up feeling tense and wary

of the burden within her and what she must carry.

It pains me to see her so wrought and so coiled

And I hope every moment her demons I’ll foil.

 

And when those moments arise with her smile

I let go my breath and know for the while,

I can watch her at play, at rest and at sleep

‘til the storm returns and over us sweeps.