Public Service Announcement

Parents,

As a mother with a child with special needs, I want you to teach your children that they shouldn't be afraid of him or anyone like him. They don't have to stare at him and whisper to their sibling or parent about his trach. They can come right up to him (or me) and say, "What is that?"  Tyson loves to tell other kids, "That's my trach!"  Then he will usually do a dance and be happy he made a friend.

Further...

Teach them to walk up to a boy with down syndrome and make friends.

Teach them to give a high five to the kid in the wheel chair and ask if he can do wheelies.

Teach them to smile and wave to the little girl with autism.

Teach them to ask to help an aide who is tube feeding another child.

Teach them that even though they are different, they still can be friends, and they do not deserve the stares and whispers.

That is all. Pass it on...

Over and over and over again...

SIX times in one day!!!

Getcha mind outta the gutter!  I'm talking about how many times Tyson has made me watch Cars today.  He's stuck in a bed, hooked up to oxygen and wires and whatnot, and all the kid wants to do is torture mom...er, I mean watch Cars.  This may be the record of how many times I have watch it in one day, but I've seen it so many times before I swear I could sit here and recite the entire thing for you...and do all the facial expressions....and draw all the animation.  In fact, Tyson has watched it so many times, he can even tell you when the singer in one of the songs goes, "Uh".  It's sick.

I used to be a nanny for a 5 year old little boy with big brown eyes and curly blonde hair who was non-verbal autistic.  He watched A Goofy Movie and An Extremely Goofy Movie, the way Ty watches Cars.  He would watch them back to back, and every single time, he would watch it as if it were the first time he ever saw it.  And with both of these little boys (my almost 5 year old now, and my 5 year old Rocky who I watched over 10 years ago), I love just sitting there and watching them during their movie.  The big smiles, the way they anticipate their favorite part, the way they cock their head like the character does.  It's like pure innocent joy.  It's hard for me to say no to him.  And I wish every kid could experience that with such a simple thing.

Now Tyson isn't autistic...or at least his doctors have said that to us several times even though I've asked for testing because he has "autistic tendencies".  He has sensory issues and some social issues (but they think that's because of the medical stuff and developmental delay rather than autism).  There's a few other things that remind me of Rocky though.  The way he holds his hands, the way he walks, the way he tilts his head, he has some ritualistic behaviors.

I'm not worried that my son is autistic.  I loved Rocky for everything that he was (and probably still is even though he's 16 now).  I've worked with several other autistic children as well back in my preschool teaching days.  And I've even considered many times over to go into special education at some point in my life.

The thing is the label.  Do I need a doctor to tell me he's "autistic" because of these tendencies?  Or do I just take them as part of him and react as I would with any autistic child...like they are normal?  Whether autistic or not, a child is a child.  And whether autistic or not, each child is special in their own individual way.  Tyson is special.  And that's all I have to remember.

So bring on Lightnin' McQueen for the 86145th time.

Ty and Mommy....Can you guess what we're watching?

A wise young woman once said...

Earlier today I got an email from one of my good friends with a quote he found from an email I wrote to him in June of 2001 (he found it in his computer archives, good hoarder, huh?).

"Sympathy is annoying, but support is welcome."

So true!  I was far beyond my years....  *pat on back* 

After writing back asking what the email was about, he informed me that I wrote it after a huge break up with my college boyfriend and a major down slide into depression.  Funny how this applies so differently now!

One of the worst things anyone can say to a parent of a special needs child is "I'm sorry" or "You poor thing" or "You have your hands full" or "Bless your soul" or "You're a saint"....  I fully admit this is the first thing that pops into my head when meeting others in predicaments close to mine, and in fact, I said to one of my peer special needs mommas last weekend, "Aren't you a saint?"  I did, however, quickly catch myself after I said it saying, "Don't you hate it when people say that?" and we chatted about how it just kind of comes out.

The fact is that people do not know what to say when they meet special needs children (or anyone with disabilities for that matter).  It's so hard to treat them "normal," I guess.

I'd like people to meet Tyson and ask him about Spiderman, the "guy" he's holding in his hand, or his awesome light-up Cars shoes.  Instead, most people who meet him talk directly to me (as if he has no cognitive ability to know that they are standing in front of them).  Where as when they meet Annie, per se, they ask her questions:  What grade are you in?  What dance classes do you take? Where'd you get that pretty dress?

Because of this, I meet other special needs children and quite often ignore their parent first and talk directly to them.  In fact, when we ran into Tyson's friend and his brothers (2 of the three are on the autism spectrum) at the orchard last weekend, I immediately became best friends with the oldest boy who took me by the hand wanting me to see the goats with him because I talked directly to him. I showed him love and acknowledgement.  I cannot tell you how much the smile on his face and his warm hand in mine filled my heart with joy!  I dare you to do it sometime!

So I'm challenging all special needs parents here to help those outside our loop on how to handle this situation.  I want to know what you think others should say to you when they find out you have a special needs child and what you would like others to say to your child to include them in the world.  Has someone said something profound to you when realizing God blessed you with this special person?  Please share.

The Battle of Snot-Green Shirt

After Tyson waged all out warfare on poor lil ol' me a few weeks ago, I have avoided taking him out on my own inadvertently until I recharged my super powers to do it again by myself.  Luckily, he's been good about outings in this time.  Maybe he learned a lesson?

Understandably, my medically fragile Tyson, who spent the first 8 months of his life in the hospital and then every other month for more than a year with admissions and countless pokes and prods at doctors' offices and labs and xrays and so on and so forth, has a pathological fear of anything that remotely looks like it could possibly slightly be a hospital or a doctor's office.  He cries and screams and shakes and says "No!" over and over and over again even when he just needs his ears looked at or his lungs listened to.  He also often becomes combative, pulling my hair, swatting my glasses off my face, kicking and punching, at times.  As you may have guessed, I rarely go on these trips by myself.  Luke comes with me when he can, but very often my mom (my personal Super Hero) makes these trips with me.

Yesterday, Ty woke up with a huge green slab of snot from his nose to his chin.  He has had an increase in mucus over the last few days and started a pretty good cough.  Ty's coughs are almost always caused by post nasal drip unless there's a lung infection going on.  Since the cough increased and the snot got green we called the pediatrician to come in and make sure we catch the crud early before it moves to his lungs and takes him over.  Now remember, Tyson has a trach because his lungs are scarred quite a bit from his prematurity, so he is quite fragile medically.  In the last year, he's been able to fight all infections off at home with no extra ventilator time or oxygen, which is a huge difference from the past years where he'd regress back to 24/7 vent use and hospital stays from 3-14 days in length.  But we still try to always catch infections early.  Unlike other kids, a common fever can kick Ty on his ass completely, causing him to sleep upwards of 20 hours a day, and germs anywhere (his nose, ears, throat, etc) can easily pass down to his lungs attacking the weak part and become way worse than originally.  So we are diligent about acting on his every cough and sniffle.  Wait, that's a little too cautious.  It's more like we watch every cough and sniffle and as soon as they become different then we act on them.

Anywho, back to traumatic Tyson trips by myself.  When I made the appointment yesterday for this morning, Luke was going to be coming with me.  This morning, however, the old man woke up in intense pain in his left knee unable to bend it, curling up in the fetal position and crying like a wounded animal that he needed his leg amputated.  Well, not really, it was fun to paint that weak picture of my stalwart man for you though. He woke up and his knee was shot.  It's been hurting for a few days now but has progressively gotten worse and today has been the worst.  So I donned my metal armor and packed Tyson up to take him to the doctor myself since my husband has been hobbling around since he woke up.

Our pediatrician's office is about 50 minutes away from our house because we live in the middle of nowhere in Mid-Michigan.  For some reason, Ty has a sixth sense about direction and where we are heading.  As soon as I turn on a certain road he can tell me where we are going.  When it's to the doctor's, he tells me with a scream and shrill no's.  Usually he calms down for a while and then starts his antics up again after we get there, but today he decided to cry the whole way there.  I tried to calm him down, but you can only do so much when your kid is screaming hysterically while you are driving.  Plus, I knew there was nothing I could say that would get him to stop...except maybe that he would get to go to "Da Wahmaht Stoy" after his appointment if he calmed down, but I tried that and failed miserably.

Have you ever been at your child's doctor and you can hear a distant cry in one of the rooms and you think, "Aw, poor kid", but then things are ok?  Ty was that kid, but it didn't just last a second.  We sat in the waiting room for about 5 minutes with him screaming and crying and burying his snotty green nose on my chest right between my boobs (luckily, my shirt matches his snot so you can't really see it!)....and everyone looking at us!  Most of the parents were concerned and pitying.  The kids were intrigued and wanted to comfort their fellow toddler buddy.  And then this one woman actually picked her child up and walked out of the waiting room huffing about how it was "so loud" and "obnoxious" in there.  My first instinct was to punch that lady in the face.  My second instant was to trip her child so that her kid screamed and cried and she couldn't stop her and I would look right into her eyes and say, "That's so obnoxious!"  My third instinct was to pity her.  How can ANY mother not sympathize with another mother who is comforting their terrified child?  Then I let it roll off my back (at least enough to not make me utterly pissed, but kept it enough to write about it now).

Ty's doctor is very good about not letting us stay in the waiting room because they don't want him to pick up things from the other kids especially if he is already ill and weaker than normal.  So like I said, we were only in the waiting room for 5 minutes max until they called us back.  We get first-class treatment there.  And I love to see the jealousy in the eyes of those waiting because we just got there but we get to go back already!  Nanner nanner boo boo!!! Granted we do get to go back, but we also do wait as long as any other person does in the waiting room. So it's not like we are fed grapes and fanned with big ostrich feathers.  We waited for a half hour in our room and he cried the whole time.  I'm pretty sure he left at least a half inch thick snot coating on my shirt.  I stayed calm, I didn't let him get to me and make me mad.  I didn't let the waiting get to me either.  I just practiced some breathing exercises and kept positive.  I kinda spaced out and didn't even hear him anymore to be honest.

You know how children jump when a balloon is popped and they look scared to death?  Ty looks like that when a door opens at a doctor's office.  Dr. Mike walked in, Ty jumped out of his skin and turned ghost white....and he farted (which made me giggle inwardly).  Dr. Mike isn't our usual doctor, but ours is on vacation, and I trust him more than the other guy because we have seen him before.  And he is one freaking fantastic pediatrician, let me tell you!  We see A LOT of doctors with Tyson's condition and the ones that I like and trust are the ones that make Tyson feel more comfortable.  So Ty jumped (and farted) and almost started to cry but then Dr. Mike chatted with him about Spiderman on his sweatshirt and Lightnin' McQueen on his shoes.  Ty made a new best friend in a heart beat.

Really?  I went through all that for a simple chat about his buddies for Tyson to relax?  Sigh....the things I go through for that kid!  Turns out he's fine.  Just a simple cold, but he put him on antibiotics preventatively since he easily catches other things and/or the infections get worse quickly.  After that quick little visit, Ty jumped up off the bench and bounded to the front desk saying, "Oh, where's my bideyman dicker!" (Get yer mind out of the gutter, I swear that's how he says "sticker"!)

So I fared another battle with minimal bruising (one good hair pull and two slaps to my glasses, and a whole lotta snot on my shirt)...I didn't win it but I got through it.  I'm trying to get him to realize that I'm not going to give him a reaction when he acts like that, and I'm diligently trying to allow other people's opinions, stares, pitiful looks, etc. to not bother me immensely.  I'm human and I'm a mother, so yes, they do bother me to some extent, but I am not letting them ruin my life anymore.  I think I'm getting better at this.

War at Walmart

This is the blog that started this venture.  I wrote this on March 27, 2011 (a week ago).  I had huge uprising of support saying I should be an author.  Well that's a huge step from a little story about something that happened to me to writing a book (I just had a mini heart attack considering it again!)...maybe some day.  For now, blogging is a good start.  Enjoy "War at Walmart"!

Have you ever had one of those moments as a parent where you can't stand what is going on and do not know how to deal with it and you feel like everyone is looking at you and judging you?  You know, the one where you have a screaming child in the store and it takes everything you have not to wallop them upside the head.  Now take that exact moment and make that child one who cannot communicate clearly and because of this gets so frustrated that screaming, kicking, pulling hair, punching, etc ensues.  Do you think you can get through that?  Well I did!

Before I get into this let me give you another scenario.  Now you are not this child's parent, but one of the people in the store watching this go down.  Are you standing there judging the parenting?  Are you feeling sorry for the parent?  Are you wanting to help?  Or do you want to get as far away from it as possible because you can't stand the child?  Are you thinking that the parent is the worst parent in the world because they let their child get to this point?  Or maybe you are thinking that "If that were me, I'd....", what?  What would you do?  Hit the child?  Remove them from the store?  Give in to what you think it is they want? Or would it just not get to that point if it were your child?

Be honest, you all know you have made these kinds of judgments before.  I'm not saying I never have either.  But more often than not, no one is taking into consideration that maybe that child is like Tyson.  Maybe he didn't start talking until he was 2.5, and maybe he is very hard to understand because of medical issues.  Maybe the child is autistic or has downs syndrome.  Does your judgment change then?  But even if you don't know Tyson, or can't see that the child has downs syndrome, or you don't know he is autistic, do your judgments change?  Sooooo many people have complicated physical and mental illnesses that no one can see.  So before you judge ANYONE, remember that you do not know all the facts.  Then take a step back and think to yourself, if it was that way, if the child did have some other factor causing the problem, could I do it?  Could I take the judgment?  Could I control myself to not hit my child or do something else that is drastic?  You don't know, do you?  Nope, you will not know unless you are in the same shoes.  So keep that in mind next time you are in the store and hear a blood curdling scream from a wayward child.

Now on to my experience....

Tyson LOVES "da wah-mawt stoy".  Did you figure that one out?  The Walmart Store.  He loves it.  Everywhere he looks he see his friends--"Bideyman", "Bunge-Bob", "Doy-ra", "Toy Dory Ree", etc.  It's like Disneyworld to him.  Unfortunately along with this love for the store comes this love for the items, and thus his mad spending spree begins.  Yet, he doesn't have money to spend, so what does this lead to?  Well, racking up credit, bankruptcy, homeless-ness....oh wait, he's 4.5 so this does not apply.  It leads to a fit of screaming, kicking, punching, hair pulling, throwing items, trying to climb out of the cart, knocking things of the shelves, etc etc etc.  Have you started judging yet?

Usually when I bring him in to Walmart, I talk to him first about what he would like to buy.  Usually it's stickers, bubble bath, band aids, something that only costs a few bucks.  That I can manage.  I talk to him at length (usually the whole car ride to the store) about "This is what we are going to Walmart for"  and "This is ALL we are going to Walmart for."  He seems to understand in the car just fine.  But as any child faced with Disneyworld in front of them, he goes buckwild when we enter the store and forgets all cognitive abilities, getting drunk off the fumes of propaganda, and loses all sense of what we came there to do.

So with that said...Tyson wanted bubble bath today.  "Bideyman" bubble bath.  I needed dog treats, some stuff for my hair, a booster seat for Cooper (yay, he finally hit the right weight for it!), and some kind of vitamin my psychiatrist wanted me to try for sleeping before having to take another prescription that I really wasn't fond of (that's a whole other story).  Game plan:  Go in the store, get half the things I need, "find" bubble bath and let Ty pick out which one he wants, then finish what I need to get as he marvels over his new possession in the cart, pay for items, and VOILA!  Out the door unscathed.  How can I be so naive???

I didn't even get one of my items before Ty went off on his tirade.  He wanted new band aids.  Um, we have 5 boxes at home of all his favorite characters and we have a rule that he only gets one a day (even though he usually gets more at school because he also has one box in his go-bag and Miss Beth bought him his very own Scooby Doo band aids because she loves him, but doesn't realize he's turned into a band aid monster!!!!).  So, "No band aids today, Tyson.  We will get a new band aid when we get home."  "Oh, ok".....

Not a second later, TOOTHBRUSH!!!!!  "No!"  A little more of a fight this time, but not too bad....Got my hair stuff, got dog treats....Off to find bubble bath.

On our way, PILLOW PETS!!!!  I quickly averted.  Phew, he only mentioned it once, didn't ask for it but said while we passed, "Ooooh Pi-yo Bet!"....still getting to the bubble bath.

BUZZ WIGHTYAH!!!!!  Ducked into another aisle and got Ty to play a game of hide and seek with the bubble bath.  He was it, bubble bath was hiding.  "Where are you, Bubble Bath??"  Forgot Buzz within a few seconds, but until not after a very loud and slightly embarrassing, "NOOOOOOOOOOOO BUZZZZZZZZZZZ".

WOO HOO!  Found bubble bath.  But oh no, there's Bunge-Bob, Doy-ra, Tinkiebell, Bidey-man....oh how do I choose?  Oh, I know, let's get them ALL!!!!!  Um, no..."Tyson, you wanted Spiderman bubble bath.  Here you go, sit back down and we can get the rest of mommy's stuff."  Hold on, not that easy mom!  Mini melt down about not having every single bubble bath in the store.  Strike that, not so "mini", more like "WORST MOM IN THE WOOOOOOORLD" battle....I don't know how but I got him passed this one.  But I did…..but only for a second.

On my way to get the other two items I needed and we pass stickers in the stationary department.  Operations overload!!!!  Bunge-Bob, Cars, Gooby Doo, Doy-ra, Woody, Ironman, Bideyman.....  "Ok, Ty, if you would like stickers, you can pick one out and put the bubble bath down."  Negotiations begin. 

"Oh ok, how bout Bunge-Bob dickers (yes, I realize how he says that is pretty dirty!  Change your thoughts people!), and Bideyman bubbo-bath?" 

"No, Ty, I said one of the other." 

"Oh, ok, bye Bideyman Bubbo-Bath, Cars dickers and Bunge-bob dickers and Bideyman Dickers."

"No, one!"  Hold your ground, you can do it!

"How bout Bunge-bob, Doy-ra, and Cars dickers?" (I'm serious, this is exactly how he talks)

"ONE, Tyson."

"Doy-ra!!!"  Good, I did it.  He picked one.  He didn't fight me.  He didn't care that the bubble bath got put down on the shelf (which I made him do himself so that he knew it was his choice).  Yessssss, shopping trip almost done.

Pull away from stickers off to find my other two items. "BUUUUUUUUBBBBOOOOOOOO BAAAATHHHH!!!!!!!!"  Damn.  I explained to him calmly what we had agreed on--Bubble Bath OR Stickers.  I told him we are done, he made his choice, now we have to go finish shopping and go home.  I buckled down for a battle of wills; surely I would get some fight back, but didn't expect all out warfare!

I kept going through the store to get to my items, all the time talking really quietly to Tyson (because raising my voice shows that he got a rise out of me) saying over and over that he picked stickers, "I know it's sad that we cannot have both, but luckily we have bubble bath at home."  At this time his pleas got extremely loud and unintelligible.  I'm serious when I say I had no idea what he was saying.  "Ida bubba da ome an da dicka bide ah muh ows."  Yah, did you get that?  I didn't.  And the fact that I didn't understand him made him that much more upset and frustrated.  1) I don't get what I want.  2) You don't understand what I am saying.  3) I blow up!!!

He started throwing things out of the cart then tried throwing himself out of the cart.  At this point, he DOES NOT get what he wanted whether I even knew what he wanted or not.  At least not with me, Gramma, Daddy, maybe even Gram, would give into him to keep him quiet in public, and honestly, I don’t blame them really.  With me though, no way.  I took the stickers from him, and again quietly and calmly said, "Oh I'm sorry.  I know you are so mad, but you may not act like that in the store.  Now Dora has to stay here.  That is sad."  And I put the stickers down on the shelf.  I fooled myself into thinking I would be able to get my shopping done for just one split second and then gave in to the fact that the other two items would have to wait until another time.  I had a full blown meltdown-tantrum on my hands and I would be lucky to get out of there without a SWAT team's help.

I tried to calm him down by hugging him and using my soothing voice, but he flailed around, kicked me, punched me, threw my glasses off my face, and I'm pretty sure I only have half a head of hair now.  He was going to throw this tantrum whether I tried to stop him or not.  So why make us both exhausted and irate?

I've been working on staying calm and effective in situations a LOT lately.  I've also been working on not worrying about what others think of me or what's going on.  So here's what I did.  Ty wanted out of the cart.  I held on to his shirt sleeve and walked alongside the cart to make sure he would stay in it and safely, but I allowed him to throw his fit.  Yes people looked at me, I knew some were pitying me, some were angry at me, etc.  But really, I didn't care.  My concern was keeping my son safe, teaching him a lesson, and not losing my cool or working myself up.  So I saw them, and let it roll off my back.  They do not know all the facts.

I was really proud of myself.  I got him to the check out (self check out so I could do it at my own pace), kept my hand on him, used my other hand to ring up all the stuff, had some lady saying, "Let me guess, he didn't get what he wanted.  I totally know what you are going through, I have five..."  (and preceded to tell me every single thing each of her five kids have done in the last 10 years in grocery stores).....wait, pause, I must stop here.  Here's another judgment issue.  My first thought was, "Dammit lady, does it LOOK like I want to talk to you right now?"  But then I thought, "Maybe she just feels sorry for me and wants me to feel like I'm not the only one."  So although she was bugging the shit out of me, I let her talk.  It made her feel better. In fact, it made me feel better to not let it bother me to the point where I wanted to gouge out her eyes and scream at her that she wasn't helping....onward....paid for my stuff and phew, out the door.  Still with a screaming, flailing Tyson, still using my nice soft voice and explaining that I understand how he feels and next time we will have to work harder on not acting like this in the store.

I got him in the car (more accurately, I wrestled him into his seat and sat on him until I got him all buckled and locked in there so he could kick and scream and throw punches but couldn't get close to me, Muah ha ha ha!).  Got into my seat.  Looked at myself in the rear view mirror and smiled.  Then I cried.

I was completely beat.  But more than that, I was soooo proud of myself.  I didn't let his tantrum make me so mad and frustrated that I couldn't handle it.  I didn't let what others think of me make me act differently or let it bug me.  I didn't hit my child at a point where I knew nothing else would have worked (something I try really hard to hold fast to). Sure Tyson was still crying, but I did it.  I got through that and I got through it in a way that was better than I ever had before.

So if you have read this whole thing, I'm glad you stuck with me and felt my pain. But most of all, I just want all of you to remember next time you are in the store and a kid goes crazy, you don't know the half of it, so don't make assumptions.  Remember Tyson, and remember me.  And next time your child acts up in the store, stop thinking of what other people are thinking of you, don't let it bother you.  Remember that THEY don't know.  You do...and you can do it too!