Welcome to Holland

Now that we are closing in on the end of Autism Awareness month, I wanted to share my favorite essay that, to me, really captures the essence of what it is like to have a special needs child.
By Emily Perl Kingsley 
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Glamorous Life

Don't be too jealous by my life of glamour.  I was at Wal-Mart at 6:30 Friday morning to buy a plunger.  While I am beyond happy that Spencer is using the potty for all of its intended purposes, I am much chagrined that he thinks one must flush half the roll of toilet paper when one has concluded their business.  But, I am not complaining!!
Mommy realized late in the week that a presumed 'safe' food was anything but.  My mistake and poor Spencer's tummy paid the price.  I must say that once I removed it, voila, sweet baby boy came back.  Whew!  We have had an incredible visit with my parents.  Although we didn't rent a golf cart, the skies did not look like they would cooperate, we went to the park.  We had a small little picnic and then Spence played for a little while. He loved making us all sit down on the bench and he would periodically turn around to make sure that we stayed put.  I just melt when that child smiles at me!!
I was getting incredibly frustrated by cooking this weekend.  The pumpkin bread I made Friday was undercooked in the middle, the biscotti was overcooked.  Before I made the pizza Saturday night my Daddy went and got me an oven thermometer.  Ah, there lies the problem.  When the oven would beep that it was preheated, it was NOWHERE near the temperature it was supposed to be.  The pizza needed to cook at 425, but when the oven indicated that it was preheated, it was only 250.  Big Difference!  So, using the thermometer as my guide and not the oven, the pizza turned out great!

Spencer even ate some!  My banana ice cream also came out very well.  Okay, so it is only frozen bananas, but really you could mess it up. (I think?)
This cooking everything from scratch makes you crave kitchen appliances that will make it easier.  So far I've bought a waffle maker (once I discovered Spence loves waffles), toaster bags (to keep my gluten & non-gluten items from contaminating each other), a pancake express (cool little gizmo!), and a VitaMix blender.  Happy early Mother's Day to me!  It is now time for the mad gluten-free scientist to go to her laboratory.  You probably refer to yours as the kitchen.

The Twilight Zone

I believe that is where I now reside.  Spencer has not been acting like himself since we moved (April 8) on the heels of Spring Break.  Granted, I made a lot of necessary changes during that time (we went home, took him off of his meds, came back here, moved apartments) that I can't pinpoint exactly what has done him in.  My normally happy boy who wakes up early has become a grumpy 'barely waking up in time for the bus' child.  He was sick for two days last week, so he didn't take the bus Thursday or Friday.  It took a few days for us to find the ideal spot near our building for the bus to pick him up and drop him off.  Couple that with a new bus driver (I'm not sure if she is just a sub) who comes a little earlier than the regular one and you've got a six year old in total confusion.  He has been making me bring my purse out to the car and wait with him in the car until the bus gets here.  This morning, the bus beat us.  Spencer did not want to deviate from our plan, so I had to CARRY him to the bus.  He got on and fell to the ground. Bus driver told me she would take care of it (in other words, Momma get lost) so I hid behind some trees to watch while they got him strapped in and sent off.  So, I came back here and made my coffee and took a hot bath (my remedy for stress!) And, still I am not relaxed.  He has been at school for a half hour now, and I haven't received any calls, so he must be working through whatever it is that has him so out of sorts.  This is when his lack of language and communication skills becomes incredibly frustrating for us both.  I can't help him if I don't know WHY he is so upset.  Was he tired? hungry? mad? confused?  I don't know, and that bothers us both.
Still on the same subject- Spencer has been wetting the bed.  He hasn't done that in forever.  He refuses to wear night time pull ups to bed, insisting on underwear.  And he sleeps in my bed.  When I can, I slip a pull up on him while he is asleep.  Sometimes he even leaves it on! My linens are being washed as we speak.
I am so tired, all the time.  I crash early, than am up several hours in the middle of the night.  Last night, I am playing solitaire on my phone around midnight when the phone rings.  It is labeled unknown, so I decline the call.  Not a minute later, another call comes through with an area code of home with a number I don't recognize, so I hit decline again.  No message is left.  My mind begins to wander.  Is that my neighbor's cell phone calling to tell me something is wrong with my family?  I can't rest, so I send a text message to my husband (I don't want to wake Peyton) and he responds that everything is fine.  Must have been a wrong number.  I toss and turn and can't fall back asleep.  I guess I finally do, because when I wake, my alarm had been going off for 30 minutes.  Me, oversleep?  That just doesn't happen.  EVER. Anyone who knows me well knows I'm more likely to wake up a half hour early than be 5 minutes late. I was trained that way.  :)
Looking forward to today, going by Tammy's apartment with another mom to whip up some gluten-free goodies.  Should be fun!  I need to be around other adults sometimes.

BRAVO- have I got an idea for you!

By now we are all so tired of the Real Housewives of here and there.  So, what about following the "Gluten-free Goddesses of Peachtree City" (catchy title, huh?)  Seriously, drama would not need to be created with contrived situations, we LIVE with drama every single day.  I can't guarantee catfights between the moms (we are all we have!) but I can guarantee meltdowns- child and adult.  Bravo's tagline is, "Watch what happens".  Who is more unpredictable than a child on the autism spectrum?
Yes, this idea came to me while I should have been sleeping.  Maybe I'll pitch it to them...
How could they resist?  Cute children, a heartwrenching story, successes, emotions, and drama (oh, my!) I'm already thinking of the season finale where they do flashbacks to where our children were when the season started and their progress at the end of the season.  America would just eat that up!  Are the rest of the gluten-free goddesses with me?

"I have always relied on the kindness of strangers"

Sounded great when uttered in a Streetcar Named Desire, but I never would have thought it applied to me. I am a Type A control freak who likes to do for myself.  So, it is God's cruel joke that I have a special needs child.  I am no longer in control.  I can't do everything myself.  It has taken a long time for me to realize that when one is offered help, it is no reflection that you are incapable.  We all need assistance along the way.  Never has that truth been blatantly obvious but at my time in Peachtree City.  I am miles away from friends and family, alone with a small child.  When Spencer got sick last week, it busted my little competence bubble.  Pity party- guest list of one.  I realized that while I have many acquaintances here, I have few 'friends'.  Sometimes you need to decompress and let all the negativity out, so you can refresh your outlook.  And there was no one I felt comfortable enough with to let down my guard and be truly vulnerable.  I won't lie; having a child with special needs is hard.  Living away from your spouse and child is hard.  Following the stringent diet, doing therapy, providing support - it is all hard.  And I wouldn't change a thing. I am investing in our future.

I was humbled yesterday at the Brain Balance Anniversary Party.  While my spouse and stepson are a mere 500 miles away, others are here alone with ALL of their children clear across the country from their spouses.  And yet, they seem to have it all together. Sometimes it makes me feel like I am just treading water and barely keeping myself afloat.  

I do have to hand it to my little guy.  He is remarkable.  The progress he has made so far is just incredible.  He is surrounded by such loving, caring individuals that he has just blossomed.  From his school teachers to his Brain Balance therapists, no one is just 'doing a job'.  They all seem really invested in his success.  What an incredible feeling that is!  

I have been reluctant to take Spencer shopping after the last fiasco, where he tried desperately to beat his head against the hard tile floor of the retail establishment.  So, when the choices for breakfast yesterday became starvation, gluten or grocery shopping, bad momma chose gluten.  After going through the McDonald's drive-thru and giving Spencer his pancakes, I was just a little stunned to find them being thrown at me (in the car, mind you).  That's right, he didn't want them.  So we got our grocery list and proceeded to Kroger.  There is a place in heaven for Sherleen, the Kroger employee with an autistic child of her own who helped us out.  Spencer was fine once I got him out of the car, but like any mom of an autistic child, you just keep waiting for the inevitable.  And there in the floral department, Spencer decides to stage a 'sit in'.  He's not moving.  This is when Sherleen steps in.  She helps me get him to the check out, unloads my cart on the conveyor belt and while my purchases are being rung up, she gives me her name, cell number, email and store phone number.  She tells me that if I ever can't get him out of the car, just call the store and someone will bring the few items I need to the car and we can handle the payment in the parking lot.  

And the day got even better from there.  We went to the Brain Balance Anniversary Party.  Spencer had a fabulous time!  He played on the Space Walks and even sampled some new foods.  (Thanks Tammy for the Pumpkin Bread recipe- Spencer LOVED that!) I am feeling a little guilty today because Spencer is back at school and I am enjoying my alone time.  I'll be at the library soon for some more books, got to keep my brain sharp!  My parents will be coming up this weekend for their monthly visit to celebrate Easter and my daddy's birthday.  It will probably rain.  It always does when they come to town.  I am hoping that my hubby and stepson can come visit for the holidays, but I am not sure about Pey's traveling basketball team schedule.  I am going to try my hand at baking my daddy a birthday cake that meets all of Spencer's dietary restrictions.  Hopefully, it won't end up like some of the other things I've made recently- they ended up in the trash :(  

I used to be capable of writing a few paragraphs that were coherent and flowed.  These days, I seem to just type out caffeine fueled 'trains of thought'.  Oh well.  I could sit here all day and make my blog read like a well written prose piece, but I would over-edit and you would lose the feeling I put behind it.  

It's coming back to me, now...

Aw geez, how could I forget!  This past weekend, Spencer just started breaking into the alphabet. Spontaneously! I thought it was something he was doing at school, but I found out yesterday that it wasn't. Granted you can't fully understand him, but once you figure it out, he is not that far off.  Also, he went through Sunday's Toys R Us circular and found a prefilled Cars easter basket and made a point to show me.  I figured that he wanted it.  Of course, his grandparents were at Toys R Us last night looking for a basket of cars.  Oy. Then I had to explain it was a basket of Cars themed items.  Gotta love 'em!  On the same page is an Elmo easter basket, which Spence has at home.  I asked him if he knew who that was and he replied, "Em-O".  Close enough for me!
I love the school pictures from his Georgia school!  Spence is smiling (on cue!) and looks present.  His previous school picture, taken a mere 6 months ago, shows a child who looks like he is not even there or aware of anything.  Anytime I get selfish about missing my life and my friends, I just look at those pictures.  That is why we are here, and the fact that he is progressing so well is just icing on the cake.  (neither of which we can eat :(  LOL)

Spring Breaking the Habit

So much to report.  I will try to present the facts in an organized fashion, but let's face it: my poor tired mind does not function like that anymore. (I'm blaming it on the children.) Anyway, the biggest news is that I took Spencer's week off for Spring Break as an opportunity to take him off of his ADHD medication.  While I know we should not have gone cold turkey, I wanted him to have any necessary side effects while he was in our care.  Besides sleeping (a lot 10-12 hours), we really saw no change.  Occasionally he would have hissy fits, but not temper tantrums.  I know it was hard for his little body to adjust; but with his therapy, I really didn't feel that he needed the medication at all.  The main side effect has been an increased appetite.  REALLY increased.  The child has eaten stuff that he has never eaten before (and not on his list of approved foodstuffs, either!)  His lunch actually resembles that of a neurotypical child, now.  Of course, he is not liking mommy's homemade versions of his approved menu.  I keep getting flash backs of Chris Rock, "I don't want no home burger, I want a McDonald's burger." My mind works like that.
We had to come back on Thursday so we could move on Friday.  I have never felt my age like I did last weekend.  Up and down those stairs like to kill me.  It didn't help that the weather was muggy and the air clung to you like a wet blanket.  It was exhausting, and my muscles were screaming in protest. But we are all moved.  The only real difference is that we are closer to the pool (which opens May 1) and our apartment is the mirror image of the other one.
Good news.  Spencer has actually spent two nights, out of six, sleeping in his own bed.  I don't know why he loves my bed, but he sleeps horizontally and uses my body like an 'under the knee' pillow.  Comfortable for him, very uncomfortable for me. Guess I need to get ready for my day.  I'm sure there is more to report and when I remember it, I will post more.