Anniversaries

Last week was the 1-year anniversary of my youngest son Percy’s diagnosis of Autism.  This year I spent that evening in a room at my church with six amazing women, leading a training session for volunteers who want to help with the children in our special needs support group.  What a positive way to spend the day! 

Last year it was not such a positive day.  I was looking back through the archives of my blog and remembering all the complicated emotions I felt back then- STILL feel.  We have had a lot of highs AND lows since then, but I am happy to report that Percy has made some wonderful progress.  His speech, especially the past month, has exploded.  A year ago he mostly only said “ball”.  Now he is talking in increasingly complex sentences!  One of his new phrases is “I Love you”, unprompted.  Oh it just killed us (in a good way) the first time he hugged his Daddy & me & told us that.  What an INCREDIBLE feeling.  He has also started to like to cuddle (when we can get him to hold still).  THANK YOU, God.  It used to break my heart when he wouldn’t let me rock him.  But he has now started to realize that it feels nice… although if he had a choice he would rather cuddle DADDY.  That deserves its own paragraph.

I am a stay-at-home mom &  some days I find being around two emotionally-charged (we call it “not boring”) children utterly exhausting.  I am pretty sensitive myself.  Sometimes at the end of the day when Mapman gets home I am DONE, and he takes over.  He is Mr. Mom a lot of nights, and even takes care of bathtime more often that not (I LOVE that man).  I think Percy may have started to think that I am the babysitter and Mapman is the Mommy.  He now prefers his Dad.  If Daddy is around and I go to push Percy’s stroller he cries, “No, no! That’s Daddy’s!”, or if I try to unbuckle him from the car seat, it’s “No, Daddy can try it!”  Funny use of words, but painful.  I sometimes wonder what it is I have done to cause this.  Maybe it’s because I spend a lot of my day trying to keep up with the mess the kids make in the house.  I do play with my kids, but admit I probably don’t do it as much as I should (show of hands, anyone else feel this way?).  Another part of it, I am sure, is that because of Percy’s Autism he prefers routine.  We joke that he has “imprinted” on his Dad.  I don’t always feel like laughing, though.  I want to be FIRST, I want him to want Mommy most, but sometimes I am just too tired to BE Mommy.  I HATE this.  Actually, that is an understatement.  Few things in life cause me as much pain and guilt as this. 

Okay, enough.  Back to the positive.  Percy is 3 and almost 4 months and is finally almost done potty-training.  ALMOST.  We can’t get him to even TRY to poop on the potty, he asks for a diaper when he feels the urge.  Any advice on how to help that along?  He REFUSES to sit down & even try.  Also, sometimes I have a hard time getting him to wear underwear because that is change, and in the world of Autism change is BAD.   Some days it really upsets him.  All he has ever known is a diaper.  When I DO get him to wear underwear he doesn’t like it if the front is plain & the characters are only on the rear, so he wants to wear them backwards, saying ”NO! Goes right DERE!”  Whatever, not a big deal, looks pretty cute, actually.  Doesn’t change the fact that I am SO proud of my big boy.  I know that potty training can be REALLY difficult for children with Autism Spectrum Disorders.

Stories from friends

It is so wonderful to know that we are not alone on this journey.  It helps so much to hear stories from friends and share in their struggles and victories.  Sometimes, though, they recount experiences that I find so painful, so frustrating, that I wish I could just swoop in and take all their troubles away.  These are two such stories, from two of my in-real-life friends.  I share with their permission, and will let their stories speak for themselves (in italics).  The first is from a mother whose daughter has been diagnosed with an Autism Spectrum Disorder.

Have you every physically felt your heart break?  I did last weekend…

I’m not dead

Hello there, bloggy friends!  Just wanted to let you know I was still alive and mostly well… usually.  Thank you to those of you who had been checking in on me.  It was nice to be missed.  I just seem to have a one-track mind (read- ADD, seriously) and have been focusing on other things lately.  As I recently observed about the people in my family, we don’t have hobbies, we have obsessions. And my obsession right now, besides taking care of my family, is the special needs support group at my church. 

I facilitate a support group for families of children with special needs at my church and it is going REALLY well.  Lots of new families, great volunteers, enthusiastic support from the church.  We are on a break for summer but plans are coming together for the Sept-May meetings.  It has been a big blessing to me, and many others from what I hear.  Isn’t it neat how that works!?  It has also further solidified my desire to work in the special needs field when I re-enter the work force.

Let’s see… updates… Mapman and I just recently spent a week volunteering at Bible Camp.  We were given, by design, a group that had a few boys with special needs in it.  Plus my buddy Gus (who I wrote about last year) came back and his mom specifically asked for me!  I was honored &  thrilled.  She gave me the biggest compliment by saying, “This is the one time I know I don’t have to worry about him.  I know he is okay with you.”  Gus had an AWESOME week.  It was amazing to see how much he has matured & grown since last year.  I also fell in love with Mapman all over again because he was INCREDIBLE with those boys.   The perfect balance of discipline & playfulness.  The kids loved him too!

Sad, though, that although Bible Camp made me swoon over my hubs, it also made me want to yell at him.  What an exhausting week!  It took a lot out of me, going there every night, being with so many energetic children who needed to be watched so closely.  I got progressively more & more MEAN and impatient as the week went on.  Kinda like a high-speed version of what happens to a marriage over time when you have a child with special needs.  I get why the divorce rate is so high… even when two people really love each other.  The sandpaper of constant stress wears the marriage thin.

Two life lessons

Two items in the media really struck a chord with me recently and brought to mind some important life lessons.

Life Lesson #1:  If you jump into a den of hungry polar bears, you should prepare to be EATEN!

A woman inexplicably jumped into the moat of the Polar Bear habitat at the Berlin Zoo during feeding time.  Guess what happened? 

Someone actually got a picture of the attack and it is disturbing.  But you know what?  SHE was the one that jumped in there!  What did she think was going to happen?  (Although I wonder if there may not have been extenuating circumstances compelling her to jump.)  It made me think about all the times I have done silly, reckless things and then felt sorry for myself when I suffer the consequences. 

Life Lesson #2:  Different can be good!

Have you all seen this?  I have watched it countless times and still get emotional. 

I am officially a HUGE Susan Boyle fan now.  I hope she sees ALL her dreams come true. What a brave, talented woman!!! 

As a mother of a child with special needs, who sometimes does not match that perfect little model that the world would impose upon him, this clip spoke to me on a VERY deep level. We live in such a fickle, shallow society.  People are often automatically dismissed if they are deemed too different.  It broke my heart to see that crowd make fun of Susan, and I felt triumphant WITH her when she brought them to their feet.  She SHAMED them.  It made me weep because she doesn’t fit the image that society thinks is cool and yet she ROCKS!!! 

The internet is buzzing about Susan’s performance.  CNN even reported on it today, “Never-kissed woman wows Cowell, becomes YouTube sensation”.  You should read the comments people have made, they are wonderful!  The video also showed up on Give Me My Remote.  I love the comment by Catherine, “You have proven in a showstopping moment how we should not judge anyone on first appearances, nor should we ignore middle aged women and dismiss them as ‘invisible.’ You are magic.”

And as for the audience that made fun of her… well, maybe we should throw them to the Polar Bears!

The School Dance

Normally a school dance is a good thing, right?  Well, not unless you don’t have a date… or you have to fight for your right to even GO to the dance.  Enough talking in metaphor~ I have heard parents refer to the special education school placement process and the subsequent fighting as a “silly little dance”.  Well, I am happy to say it appears that my Percy already has his date for the Fall dance!  And it wasn’t the fight I was expecting.

My almost 3-year-old Percy has an Autism Spectrum Disorder and is getting school services through our local government.  He is currently in the trial  run of a program in its very first year, where a few 2-year-old children with developmental delays are placed in a typical classroom setting with typical children (if there is such a thing as a “typical” child).  The catch was that when the Special Education Preschool administrators (hereinafter referred to as “School”) were establishing this program they needed to find an existing setting in which to place the kids with DDs.  Amazingly, the YMCA offered THREE spaces in their 2-year-old preschool class.  Basically, they are DONATING free space in the preschool as a community service.  The School’s kids then get to go to the preschool setting & have positive peer models, and both the YMCA teachers AND a Special Education teacher are present!  A Speech Therapist and an Occupational Therapist also assist part of the time.   What a great teacher/student ratio!

Silence is not always golden

I am what you would call wide open.  If I am in pain I don’t ignore it, I EMBRACE the pain… and talk about the pain to anyone who will listen.  I think that it is important to explore our feelings in order to grow and learn from our life experiences, painful or not.  I also hope that by sharing my experiences they may be a help to others.  I HATE those taboo subjects that no one is supposed to bring up.  We have WAY too many of those in my family and I find it exceedingly dysfunctional.  I think that we give those painful & awkward things even greater power over us by keeping them hidden.  Yes, I know that everyone processes emotions differently, I get that. I just have a hard time when someone brings up a touchy subject and is greeted with an uncomfortable SILENCE. *cricket*cricket*

I have encountered a LOT of this lately when I bring up the subject of my youngest son’s Autism Diagnosis.  This has been a life changing event and it has greatly impacted the life of my family– in ways both good and bad, I’ll be honest.  So I tell people.  I am NOT ashamed.  I want them to know about our life so that I can help raise awareness and increase sensitivity.  I want them to know WHY I may not attend certain social functions or keep cancelling plans.  I want them to know WHY my son (or other children with special needs) acts the way he does so people don’t feel the need to secretly gawk.  I want them to know that when they see a child having a meltdown in a grocery store it would be more useful for them to offer to hold open a door, not whisper about “out of control brats & poor parenting”.  I want to help reduce prejudice & fight a lot of misinformation out there.  And also I just flat out like to talk… and this journey has give me a LOT to talk about!      

So Autism is obviously one of my major topics of conversation.  (By the way, it is a REAL mood killer at parties!)  Recently I have reconnected with a LOT of people from my High School via Facebook, and have told many of them about our new journey.  I say something to the effect of, “I am currently staying at home with my 2 boys ages 2.5 and 4 (only 17 months apart!!), one of whom has an Autism Spectrum Disorder.  It has changed our lives… and also opened some new doors for me.  I am becoming active in disability advocacy and special needs ministry.  I facilitate a support group for parents at my church (as a a layperson, but it is good to get to use my seminary training somehow!) and it has been an amazing experience.  I am also helping the church start a special needs ministry for the kids and I hope to work in a related area once the kids are older. “ 

So I am putting myself out there, taking the time to tell people what is going on with me.  I also take the time to ask about what is going on with them, too!  And you know what I get all too often?  SILENCE. 

Hello! It’s clearly marked RESERVED parking!

I recently obtained a Disabled Parking Placard to use when I am carting my son Percy around town alone.  It has already been a HUGE help.  I only wish I had know about it sooner!

Sometimes parking lots can be a NIGHTMARE when you have a child on the Autism Spectrum.  Percy likes to RUN AWAY.  This is because he, like many other children with an ASD, does not have an appropriate sense of danger, or  fear of being separated from his parents.  He often doesn’t respond well to verbal cues either, and keeps running when I see a Humvee bearing down on him and am frantically screaming “STOOOPPP!”  We have had lots of  heart-stopping moments.     

Then there is the whole meltdown issue.  Many a time at Preschool pickup I have wondered how on earth I am going to get my TWO boys all the way to the back of the parking lot.  I already have a tired & crabby Thomas & hands full of bags.  If you add a flailing-screaming-kicking Percy to that, it’s all over.  Carrying a child all the way across the parking lot in the midst of a meltdown is incredibly difficult (understatement).  Sometimes, when faced with a meltdown, I have simply had to sit in the Preschool lobby and wait it out, exhausted and helpless.  This can take a while. 

Baby needs a new pair of shoes!

Okay Internets, I need your help.  My 2.5-year-old Percy, who has an Autism Spectrum Disorder, has outgrown his shoes.  His FAVORITE shoes.  The ONLY shoes he will let us place on his feet.  And I CAN’T find any more ANYWHERE!

The shoes of which I write were purchased at ToysRUs.  Until recently they were not only a toy store but also a Kids’RUs and sold older childrens’ clothing.  I had great luck with finding clothes and ESPECIALLY shoes there.  They had these great canvas velcro shoes by Koala Kids that looked adorable, held up great, and were even okay for places like church.  I would buy one pair for play & one for, well, NOT play.  And the price was AWESOME… under $10, and sometimes on sale for $5.  I have been buying those shoes for YEARS and both Thomas and Percy have had them in several sizes.  It’s no wonder Percy thinks that THEY are what shoes are supposed to be!  But alas, ToysRUs has since stopped selling all but BABY clothing items.  When I found out I was officially bummed.  Now that this problem has begun I am beyond bummed, I am DISTRAUGHT!  WE NEED THOSE SHOES!

I tried to google them and could not find anyone who carried these specific Koala Kids shoes.  I looked up Koala Kids and even Koala Baby and couldn’t even find a website for the company.  I called the 800 number for ToysRUs to see if they possibly still carried them online, no luck.  They didn’t even know how to put me in touch with the Koala people.  The operator suggested I try KoalaKids.com, but that was also a dead-end.  I looked at similar types of shoes online, even Keds, but none were close enough to the Beloved.  Plus they were all around $30!!!!  So sorry, I am not spending THIRTY BUCKS on shoes for my rapidly growing preschooler!

Some of you who are unfamiliar with Autism may at this point be saying to yourself, “Just MAKE him wear the new shoes.  He has to learn how to adapt and do what he is told.”  I wish it were that easy.  One of the characteristics of Autism is rigid behavior and EXTREME resistance to change.  The Autism Symptoms Checklist  states that “Children with Autism tend to prefer established behavior patterns and a set environment.”  And my Percy wants his shoes!

Stuff I hate

Hate is such a strong word, isn’t it?  I wish I could say “dislike”… but there it is, that ugly word.  HATE.  I hate some of the things that Autism has brought into our lives.  Sometimes I just get SO mad!  So over it.  I accept that fact that my son is on the Autism Spectrum.  I celebrate his uniqueness, try to respect his sensory boundaries while pushing him to try new things.  BUT I also get REALLY frustrated sometimes at it all, battle the way Autism disrupts our lives, and I really hate some stuff. 

I hate that we can’t go out to eat at a restaurant as a family.  I hate that I can’t take my boys to the circus.  I hate that I can’t be spontaneous.  I hate that our social opportunities are so limited.   I hate knowing that people are staring at my son & wondering why he seems different.  I hate the feelings of isolation my husband & I get because other parents can’t understand what we are going through.   I hate that our situation makes it harder for my husband and me to spend time together. 

I hate it when people dismiss our struggles because “it could be worse”, or assume it can’t be that bad because Percy is learning how to talk.  I hate it when I tell people that my son has an Autism Spectrum Disorder and they get uncomfortable and change the subject. 

I hate poop painting… and the fact that after I wrote the first draft of this I found my son trying to wedge a nugget of poop into his ear.   I hate meltdowns.  I hate that my son will not eat a grape but he will eat a freaking Lincoln Log.  I HATE worrying about his nutrition all the time because he is such a picky eater!  I hate ALL this worrying.   

Autism and the ER don’t mix!

The vomit monster came to our house again this week. Oh goody.  This time we had to do one of those dreaded middle-of -the-night ER visits.  THAT was challenging, to say the least.

Rewind to last Friday.  My husband, Mapman, had the day off.  It was rainy and we needed a change of pace so we went across town to the mall with the BIG play area.  36 hours later, Sunday night, little 2-year-old Percy suddenly coughed a couple times while sitting in the computer room and -BLAMMO-  a big mess.  Mapman started to rush him to the bathroom and -SPLADOW-  Percy managed to hit SIX pairs of shoes…  hand-me-down shoes that had JUST been washed and were sitting in the hall to dry, minding their own business.  By the way, this is the SECOND time that specific mall has gifted us with gastrointestinal gore. NEVER again!