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.

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!

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. 

Pity Party

          

Put on your festive hat and pull out the confetti, ’cause we’re havin’ a pity party up in here!  Oh my WORD, Internets, I am needing some love.  My week STUNK!  LITERALLY!!!!!!

It all started with a fateful call to my SIL over a week ago, “Yeah, even though there is a lot of drama in my extended family right now… we are doing pretty good in my house.  I am on top of everything, and able to handle stress better than I used to.”  JINX!

I am happy to report that for the past 2 months Percy had been going through a pretty easygoing period.  I had just recently started to relax out of my manic “survival mode”… you know, the one where I am the Energizer Bunny & keep going going going.  But in that mode I got SO MUCH DONE!!!!  Problem is there is no middle ground for me, so after that I kind of stalled.  BIG mistake.  I got behind on housework and paperwork last week.  This has really come back to haunt me this week.

Things started getting complicated last Saturday when Percy turned back into his alter-ego, Bizzarro Percy  (I don’t mean that disrespectfully.  I am alluding to comic books… Superman and his alter-ego Bizzarro Superman).  At Music Class, which he LOVES, he had his worst episode EVER and it made me so sad & scared.  It hasn’t gotten much better from there.  He had been like this for about 2 months in Oct/Nov (which prompted me to go on anti-depressants), and then had those 2 good months.  So I guess I am in for 2 rough months again.  He is back to EXCESSIVE tantruming, hitting, biting, rigidity, destructiveness.  It in itself is exhausting.  

And of course Thomas was sick last Sunday, and then Thursday BOTH kids got sick.  Not only is that time-consuming and exhausting and you worry for your kids but it also ruins social plans.  And you know what, when you have kids with special needs you really NEED social activities.  No church last week OR this week, we had to cancel fun plans for last night AND tonight, AND it is 60 degrees outside and sunny and I am stuck inside with poop and puke!  POUT!!!!!!!

YES, that’s right, the vomit monster is back AGAIN!  Oh how I wish it was a 24-hour thing, but NO, it’s Rotavirus.  First Percy… in the church hall, then the church bathroom, then the car, then the bathtub, then the bed.  Oh, by the way, when Percy threw up in the church bathroom I called for help and the male youth minister came in to assist.  You should have seen the funny looks he got when he came out.  That is how rumors get started .  Seriously though, he is an awesome man, a real servant.  And then Percy threw up in the car on the way to the Pharmacy and I couldn’t do anything about it.  I rolled down the window to let the Pharmacist (who is my Buddy) see a dripping Percy, and he said, “Niiiiice!”

And now the Monster has moved on to dear Thomas.  At 1am this morning… and 1:30am… and 2am… and 4am.  Thank goodness for hardwood floors and my Shark Steam Mop.  Oh, and plastic gloves.  I had wanted to mop Thomas’s floor, but not at 2am!  Go, go Gadget Steam Mop!  To make things worse Percy has now graduated to the leaky and STINKY diarrhea while Thomas is puking so I have MASS QUANTITIES of laundry.  I hate messes. I am a germophobe.  I don’t think I will ever feel clean again. 

So anyway, the point is, I was already feeling sorry for myself  because my youngest kept trying to bite me and my house was a mess and I felt overwhelmed and my Christmas tree was still up and now I have EVEN MORE to deal with.  Such is life.  LOL, I guess I should be cleaning instead of blogging, huh?  But this is making me feel better.  But I am going to log off now and keep on dealing with my life and its drama.  Like Dory in Finding Nemo, I will “just keep swimming, just keep swimming, just keep swimming, swimming, swimming. What can we do? We swim, swim…”

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.   

Oh nuts!

From http://www.nataliedee.com

We just had a huge scare in our house this evening.  Apparently Percy is allergic to tree nuts.  We had NO CLUE.  Food allergies can be terrifying!

I was snacking on some yummy homemade caramel popcorn with cashews and Percy started eating it.  He has never eaten cashews and I was excited that he was trying a new food that involved protein (the boy is a carb-aholic!).  I didn’t think twice about it because he eats peanuts all the time.

Some time passed & he walked up to us, eyes red and puffy, face blotchy and covered in hives, some of them BIG.  I was horrified.  Within 5 minutes I had given him Benadryl, paged the doctor, and called our knight in shining armor to arrange childcare for Thomas yet again…  I was ready for ANOTHER ER trip!  It was a LONG 5 minutes.  I was afraid my son’s throat was going to close up at any second.  When the doctor called back he said that if Percy wasn’t yet having difficulty breathing or vomiting we should be okay and that Benadryl was the best move.

We put Percy in the tub to wash the rest of the cashew oil off his skin and then put him to bed not too long ago.  I had to set my alarm for 1am to give him MORE Benadryl.  The doctor said that the allergen will remain in his system for up to 3 days so we will have to continue medicating for a while.  Scary stuff! 

I asked the doctor why Percy was allergic to cashews if he can eat peanuts… turns out that peanuts are not nuts, but legumes.  Who knew? (you may have, I didn’t).  So now we have to avoid all tree nuts -sigh-.  In the past I had sometimes given Thomas walnuts because they are a great source of good fatty acids & oils.

So now we have officially entered the world of food allergies & label reading.   Something new for me to obsess over.  I am just incredibly thankful that it wasn’t WORSE tonight.

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!