It all started with a $20 deal...

You know those email offers that you sign up for only to delete later? It was one of those things. Roo hasn't had a nice picture taken in awhile and I received an offer of 43 prints + 5 postcards & a free wall hanging of your favorite pose for $19.99 from Portrait Innovations in my inbox. I hadn't heard anything bad about them, and I figured that they couldn't be any worse than our Picture Me (Walmart) or Olan Mills (small studio in Meijers) experiences, so why not? Have I mentioned how horrible almost all of Roo's school pictures have been?? Which is understandable.. because school pictures are taken in the gym.. and, in her mind, the gym is not made for standing in lines, looking nice, and smiling for a picture, then leaving.. The gym is for running around, getting the wiggles out, downward dog, and gym class! Sometimes the gym is for movies, plays and musical instruments... but those are all a toss up. You never know how she's going to do during a convocation. Anyway, that is my personal, logical explanation for why she can't take a good school picture when she loves school so much. It has to be violating her "rules."

We get to the studio a few minutes late, carting in 2 backpacks and purse stuffed extra full of things to keep her happy if things started going south. The hubby is just holding Roo's hand, leading her inside. (I swear, "pack mull" should be added to the job description of a mother! :-) ) I quietly informed the photographer of her autism diagnosis, explained that I understood that there was a minimum amount of pictures she had to take, told her that we would do our best, but when Roo was done, she was done. She seemed very understanding. Anyway! Long story short, she did amazing. Incredible. She made it through 90 photo shots, and an outfit change without a single tear, then sat in a chair with her iPad for another half hour while her dad and I went through them. She shocked us all! These are some of my favorites!

~*Never Give Up!*~

The Best Advice I Wish I'd Taken

Um.. So this could be a touchy subject.. I'm not sure this is the right place to discuss "arguments", "heated discussions", or "fights" between couples.. SO, allow me to introduce you to the fly on the wall,  hypothetical Jane and hypothetical John. Their names have been changed to protect their privacy, and about a third of this post will be completely untrue and.. it will be up to you to figure it all out, but the main point will be obvious. That make sense?

The couple that Mr. Fly will be telling you about have been married about 10 years. Jane has brown hair, violet eyes, and a nose ring. :c) John has brown hair, chocolate brown eyes, and big muscles. The have one child. A little girl with fiery red hair, brown eyes, & a smile that lights up a room. This is his account of one afternoon's happenings:

One day John came home from a hard day's work (he lays railroad), and was upset that once again the house was not clean. He was greeted at the door by the cat. John is not particularly fond of cats, but he will pet this one when he thinks no one is looking. He finds his wife in the next room, on her kindle, and the little redhead on the couch with her tablet. She was laying on her back, feet in the air, holding it up, while she used one or both hands to play her game. The child, not the lady (because the lady hasn't been that limber or flexible since.. ever). This is the child's favorite way to hold her Ipad. The only downside is that sometimes her big toes get tired and it slips, usually falling on her face.

John goes to the bathroom, and the little wife follows to say "Hello" and "How was your day" only to get a gruff reply. He just didn't understand how the house was still dirty. "It's been dirty over a month," he says. He went on to say that he saw their child on the Ipad, perfectly content, and why couldn't you wash dishes while she's on it?? The answer is really simple. The little redhead doesn't miss a thing, and she doesn't want to play on her tablet alone. She has these "rules" of how things are supposed to go, and at this point, her mother would do almost anything to keep her from whining and crying. This has been a long, mostly unhappy summer. The wife tells him this and reminds him how often their little girl needs to eat, and how someone must be with her, and that that takes time. He insists that they should make the cat do more around the house, because, after all, all he does is sleep, eat, and use his litter box--it wouldn't hurt him to watch a little girl eat so she could clean. "That's ridiculous!" protests the wife. "How would he give her the Heimlich if she became choked?" He sputters for a moment says, "What about Dr. {Very Nice Development Pediatrician That We Haven't Seen In Years}!?!" (Now referred to as Dr. VNDP)  "Huh?" Jane says. "What about Dr. VNDP?!" John repeats. Jane snaps, "Dr. VNDP lives in {another state}! We haven't seen her in years!"  "But what did she say?!"  "She said that I should go on a getaway with the girls for a few days! Take off for a week so that you would understand what I go through!" "What?" He looked purely shocked, by the way. "She said that you wouldn't understand unless you had to do it on your own for a few days, and I laughed, and told her that it wouldn't happen." At this point, Jane picks up the toilet plunger and beats John over the head with it. "I wish I'd done it!" she said, "because you just don't get it!"

This is where I'll stop. After living in this household for years (have I told you of my stealthiness?), I have to agree with the wife. This summer she's been kicked in the jaw over a phone call that wasn't going the child's way, endured hours of endless whining that kept away any chance of company, not to mention the meltdowns when she took her outside, because this summer has been unusually nice, bearable and even sometimes cool. This is, obviously, not what summer is supposed to feel like. The child simply doesn't allow her to clean, and even though she's just mentally exhausted by the time the redhead's bedtime rolls around, she still deserves time to relax. This has been the little girl's worst summer as far as acting out. There's still time, maybe the wifey should plan a weekend get away? I heard her tell John last night to plan on taking a week off next summer, because she was going on vacation with a couple friends. You go girl!

If you're the primary caregiver and your spouse, partner, or sperm donor doesn't "get it," let them carry the load for awhile. It will be good for everyone involved.

Three Things I Learned Right Away From Just Skimming...

 "The Out-of-Sync Child Has Fun" by Carol Stock Kranowitz (Amazon link). And to be honest, I was shocked. We stop by Half-Price Books often, and when I saw the title I vaguely remembered one of Roo's therapist's talking about it years ago.. and ya know, it was at half-price books, and I figured, why not? MIND BLOWN. This was definitely one of the best "why not?'s" ever!

(On a side-note.. I see Jenny McCarthy's books both there & at Goodwill, and I've never been tempted. If I ever do succumb, it will be to save someone from buying them who doesn't know any better... and later.. I would burn them... with fire!!!! Muhahahaha!)

(On another side-note... Please keep in mind that I have my own version of sarcasm & humor.. And if something sounds crazy, it was probably supposed to be funny..  :-| )

Back to the book..

1. Don't just say "be careful", elaborate. - I am guilty of this all the time. If we're just coming in from outside & Roo's feet are wet, I'll have her take off her shoes, and find myself yelling, "Be Careful!" after her while she runs through the kitchen. If anything, she's probably wondering what she's supposed to be careful about. And if anything, "Be Careful!" was probably more of a distraction than an aide. Something else Roo does is yank on my arm really hard if she feels like we aren't walking fast enough, or she's trying to be silly, or... really, she probably she just gets input from that somehow.. but anyway, it nearly knocks me down the first time, every time, because there's no warning. My first response is to yell. It scares me, embarrasses me, &, frankly, gets on my nerves. This week, I'm saying, "Stop. You're going to make me fall on you and we'll both get hurt." & "You can't do that in a parking lot, or we could fall & get hit by a car. That would hurt really bad."  How long I can say this in a patient voice, I don't know, but so far I'm holding it together.

2. Don't let digital experiences replace real ones. - This is a good one, & it actually caused to me unsubscribe to ABCmouse.com.  For reals, I was sucked into that portal, thinking that it would be good to have around during the summer months. And honestly, they have a great program, if you can afford it.  But if you're letting online puzzles replace sitting down with your child and putting together a real puzzle together, you're both missing out in the end.

3. Special needs equipment can be expensive, and DIY imitations can add up quickly, but the results can be priceless.- Self-explanatory at best, but just to say I laid it out there.. you really should provide what you can for your child. Skip the coffee, skip the girls' night/guys' night, sacrifice a little here and there, & eventually you'll have enough put back to purchase or build what your child needs. Or, if it's something MAJOR (think hospital bed), don't be afraid to set up a gofundme account or raise money in another way. Some kids get trampolines because they're fun.. my daughter got an indoor trampoline when she was nearly 3, because her therapist recommended it, & she still uses it. It was one of the best things we ever purchased for her, because we could tell that it made her feel good. And it made her feel good, because it was filling her sensory needs. That in itself could be another blog post, so I will leave you with that.. annnnnnd this really cute pic of Roo & her cousin from back in 2011! Thanks for reading! :-D

I get it, but your still wrong.

Working in the daycare field, I have a .. general, small insight on what it's like to work in the classroom environment. It involves planning for lessons, gathering supplies, and making sure you have all the help you need to make each lesson a success, no matter what that may be. It takes a lot of work that usually goes unseen.

There's also a social side & that's where I fail the most. Children don't have this affect on me, but I tend to be timid unless I'm really acquainted with someone. So being open and real with parents can be a challenge. 

Parents can also be a pain in the butt or a blessing. 

There's nothing like being in the middle of the morning routine when the same child comes bursting through the door late, again.. and again .. and again, once more interrupting the class. You want to ask why? Why is this happening again?? Well, first of all, you should. You should ask why. 

Now I'm on the other side. I still sub for a daycare part time, & because I'm a parent of a complex child with many diagnoses, there are too many appointments and what would be sick days for me to hold a full time job.

I love my daughter so much--enough to be able to see her strengths and weaknesses. And I know she is wonderful.. And I know that she is intelligent.. And I know that she can be pokey and ..resistant, & even argumentative.. mostly at home though, & sometimes for her therapists. 

And we are late.. Oh my gosh.. we are late so often, and it's so frustrating for me, as I'm sure it is her teachers and paras, but she has a diagnosis. She has a valid reason. And I'm so over it that some days, if we're going to be more than an hour late just because she was too pokey, or we overslept, I keep her home. 

Being a timid person, it takes a lot of courage for me to walk her into the school late (again), and even though I usually put on a cool, this is no big deal air it's because if I didn't, I'd probably be in tears. 

That being said, you can imagine the shock and hurt I felt when I heard a para make a snarky remark one of the last times I brought Roo in. The irony was that she wasn't even late for school, she just missed the bus. And this particular para probably didn't even intend for me to hear it, BUT I DID, which brings up another important fact. If your a parent who isn't homeschooling your child, at some point your going to be talked about by your child's teacher or other staff members. There are going to be moments that they're annoyed with you, or pleased with you, or just mentioning your name in general conversation, but they should never ever do it in front of you, other parents, or other children who are within earshot, especially if it's negative, because it's wrong.

I realize that there are exceptions to every rule, but this wasn't one of them. I emailed Roo's special ed teacher, explained the situation and hated to do it. Just like I feared, the para denied it, but thankfully, other staff members have continued to be polite & I feel I was believed. Which is a huge relief, because why would I make that up? I don't even know this lady's name. Yet, she denied it. Later I was told that this particular para held a respected position elsewhere, which makes it even more sad. Why can't people admit that they slipped up, or "I'm sorry, I was having a bad day," or the honest to goodness blunt truth that this child is late often, and in a moment of frustration I said something that I shouldn't have. How hard is that?

Okay, it's hard. But now I don't trust this para. I hate that. 

There really isn't a good way to end this post, so I will go with a hopeful...

The End.

Why Dye When You Can "-Ing"?

I'm going to be honest, I have a love/hate relationship with the Easter holiday (and most holidays, if I was being really honest). First off, what I love... I'm a Christian and I cherish the idea of celebrating Christ's ultimate sacrifice and resurrection because He loved us that much!  Before Roo & when I was younger, this time of year made me feel closer to God. Now... well, things aren't like I expected them to be. That's just the truth. I thought that when I had children I was going to relive childhood memories with them, and pass on traditions. Instead, I'm usually trying to find some little tidbit that I can tack on that will survive the sensory overload and extra excitement while still bringing on the smiles. I seriously try to keep the sparkly, sugary special needs take on life.. The whole "make new traditions" thing, but sometimes it's SO hard. And progress... can't forget progress.. sometimes it shows itself in the most unexpected ways.

For instance, this was a couple of years ago... she helped.

And last year, we managed to keep her in the room ... for the most part.

And this year...

This year she effectively communicated that she did not want to color Easter eggs. I mean, seriously, every time I asked her, "No!" But she did agree to color Easter pictures with us, and we did it as a family. It was the runner up prize I guess.

It was okay.

She was happy, & that's what matters.

The Friday before Easter, she went with me to a doctor's appointment because her daddy had to work late and I didn't have anyone to watch her on such short notice. It wasn't a big deal, but sometimes it's just a tad annoying not to be able to talk freely. Afterwards, I thought I would get lucky and she would be preoccupied enough with the Ipad that I could get an Easter outfit while we waited for my scripts to be filled. So we  stopped at a dress shop.

I was not that lucky.

I forgot about the mirrors. *sheesh!*

The twenty thousand mirrors all  along the walls...

So I did what I had to do.

While she was going from mirror to mirror--smudging, licking, & smiling at herself--I flew through the store and grabbed whatever caught my eye ... grabbed the first shoes that made  me pause, and grabbed a dressing room. It was stressful. It was quick. I got A LOT of looks varying from pity to snooty... Buuuuttt..  It was a success! :-D

The Easter Bunny came as scheduled and Roo was happy with her goodies. Have I mentioned that the Easter Bunny doesn't bring sweets to her? Nope, he's so awesome that he brings small toys and knick-knacks, because they make her smile more than candy. ;)

My husband and I attend different churches right now. I'm okay with that, mostly. I miss having him with me during service, but we're each doing what's best for ourselves at the moment. A wise lady recently said that the grass may be greener on the other side, but that could be because it's on a septic tank! You've gotta admit, she has a point. haha

Roo usually goes to church with me, and she has become such a big girl, staying in the pew. She loves Sunday School!

She doesn't like special services though. They confuse her, I think. On a normal Sunday, we have a few songs, a small scripture reading & then everyone is dismissed to classes according to their age. She hears a Bible story in class and does activities & a coloring page with the other kids. Afterwards, they come back to the adults in the sanctuary, an offering is taken up and birthdays and anniversaries are recognized. After that, and this is her favorite part, Roo, either by herself or with some other kids, goes up front and sings a song. Then each class comes up and tells what they learned that day. It's really cute, & like I said, she loves it.  During this past Easter Sunday, she waited until the gift baskets were through being given away, and started marching up to the front. In her mind, this was NOT how Sunday School was supposed to go. I ran up to her and grabbed her hand to take her back to our seat and she starts to come along, but puts on the brakes right when we're almost there. Most people don't realize that she can "talk." It's not always intelligible, but she does try and Terry & I can usually figure out what she's trying to say. She talks the most when she's angry..

"-ing!" she said.

"No," I said.

"-ing!" she said.

"Nooo," I said.

"-ing!" she said.

"No!" I said.

Then suddenly, we were addressed from the platform, and she was told that it was okay, she could come and sing. And she did. She sang her heart out. While she ran up there, my pastor gave a short explanation about how she has autism, and routine is important to her because there were many visitors. It was sweet. I know there are churches that go about inclusion all wrong, and that some people are still ignorant enough to think our special children are punishments from God, and even some idiots will try to "cast the demons" out of our children; but there are some churches that do it right, that know our children enough to know that they are blessings, & love them enough to help them through the rough spots. If your a Christian who's given up because you've come across some churches that don't understand, keep trying! Use Google! Ask around! Don't give up!

Anyway, however you celebrated Easter, I hope you enjoyed it! :-)

Tip-toe through the fester field

I try to stay away from angry blogging. I don't want this to be a source of pain to someone else..  Another thing to add to their "Field of Fester," where they go to wallow in it's septic mud--a mixture of self-pity, paranoia, anger, and being a know-it-all.

Beware the septic mud! 

If you happen to get too close to a "Fester-er" , you must tread gently or else you'll step on a landmine that will splatter you with crap like the pus of a giant pimple. Usually, I try to ignore it, but sometimes I have to get  it off my chest before I start to fester myself. By the way,....

I Miss AKA Super Mommy.

The longer I blog, the more I miss it. The main people that I started blogging afresh for, don't even read it. And I thought that I'd downloaded copies of blog entries that I was hoping to publish under my new name... only to find out I actually didn't. THAT was a major bummer. Anyway, back to starting afresh without anonymity. In some ways, it can be really refreshing to know that I'm accountable for everything I write and I can share it with anyone without having to worry. In another way, it's horrible, because even the best of friends will make you mad sometimes... and... even though this is the best place to express those feelings, sometimes you feel you have to--like when your brother or sister has a big autism no-no moment, or someone you're friends with goes all "if this was my kid" on you,...or when someone close to you feels that you're "sparing the rod" & it's "spoiling the child." In those moments, autism parents, or just special needs parents in general, feel so alone. And it's so unsettling. & It hurts. But when someone either gets up enough nerve (or has enough anger), that they just let all those feelings loose in a public place--facebook page, blog, support group, whatever--and you see that you aren't the only one who's been treated that way.. (OR, on a lighter note, your child isn't the only one who does that:) It's a mixture of relief, sadness, anger, and/or giggles & joy that forms a bittersweet bond. You've got their back, and you know that they've got your's. And suddenly, it seems that you have two groups of friends--"them" & "us."

Roo's Birth Story: Part II

Picking up from where I left off...

The moment when I felt my baby being taken from my belly, it was like the world paused. After the longest 2 seconds of my life, she let out a loud wail. I was able to breathe again. She was wiped down & laid on my chest, & Terry and I both had tears streaming down our faces. I was so thankful for this child, so thankful that she was alive, and.. to be honest..  so thankful that this was over with. I was ready to move on.

A minute later she was taken to another room and Terry followed. A couple of nurses were left with me and they started to clean me up. They kept talking to me, telling me how much fluid there was, LOTS of suctioning was going on. Then there was some silence and I heard one of them say, "What's that??" I never did hear the reply, but once again there was more suctioning. My OB doctor came back in to stitch me up and then left again. I was finally switched back over to a bed by the nurses, and wheeled back to my room. Halfway there my OB doctor rushed up to the nurses and said, "Where's the placenta?!" They told her that they already threw it away, and just shrugged like it was normal procedure even though the doctor seemed upset.

People came to visit me from time to time. Nobody was talking much about my baby. Some were better at putting on a happy face than others, but I could sense something was wrong. My OR nurse came back often to see if I had feeling back in my toes yet, because I couldn't go to the nursery until then. My doctor was very sweet. She checked on me, asked me how I was, and even brought me some sprite. Her bedside manners where wonderful.

Down the hall, through a  pair of thick sound proof doors, a different scene was playing out. My husband was angry. People who described him, did it with wide eyes. My poor Roo.. her blood sugar was 16, I think... dangerously low.. and she was being poked over and over again by incompetent nurses who didn't know how to start a newborn IV. Even after other nurses told them a team from Riley was coming, they continued on. To this day, I would like to have some words with them, whoever they are. 

Everybody knew that Roo was going to be transferred to a Children's Hospital before I did. Nobody wanted to tell me. Finally, the pediatrician on-call came to visit. She told me that they thought she had Trisomy 18 & that she was being life-lined to Riley Hospital for Children. I started to cry, and her reaction.."Oh, Mom is crying.. *tsk, tsk, tsk*" and then gave me a pitiful smile & left the room. Her lack of compassion, emotional wall, or whatever it was that she put up, sealed the deal that she would never be my daughter's pediatrician. 

I was crying, my mom was crying.. and she hugged me. All I could say was that I didn't understand, all the tests came back normal. With this, I must backpedal a little bit and tell you about my pregnancy. Besides being HUGE from all the extra fluid, I had extremely mild gestational diabetes. Literally, I was 1 point over the limit. I had to check my blood sugar for a week and then it was determined that it could be managed with diet and exercise. The dietitian told me that if I happened to slip up, go for a walk, and to take a walk daily. I was good. I took my prenatal vitamins till the end. Little snacks that I packed around with me where things like.. celery sticks. Bleh. Anyway, when I had the blood work done in which they checked for different genetic markers, the results came back that Roo was 1 in 10 for Trisomy 18. We met with geneticists, had ultrasound after ultrasound during my pregnancy to make sure her organs where forming correctly, and that she was responsive.. At one point they wanted to do an amniocentesis. Looking back, I wish I would have agreed, but I didn't know what was ahead. I didn't know she would grow into the term  "medically unique". And I still don't know if it would have made any difference in the long run. At the time, my thoughts were that none of the additional testing had come back showing any evidence that something was wrong, and the procedure didn't seem worth the risk. 

Once again, I have to give thanks for the nurse who made sure I held my baby before the Riley team arrived. She had an oral feeding tube in place & she kept playing with it with her tongue. My little redhead was still fussing up a storm when they handed her to me, and then she just stopped and looked at me with those big eyes. She already knew who I was.. <3 

If you've never seen a lifeline team, it can be surreal. The team arrived dressed in dark blue jumpsuits, with red stripes down the side, wheeling in an incubator. I kissed my princess goodbye and handed her over. 

Later, I was told by a friend that they started an IV with 1 stick. That's right, one stick. 

Her dad left me early the next morning, and then my mom stayed with me at the hospital. I was terrified to stay alone. I wouldn't see my little redhead for 4 days. The daytime nurse in charge of my care was horrible. I spent another night in the hospital and then was discharged. I spent another night at my Mom's house, and then packed my stuff up and headed to the children's hospital. We had a room at the Ronald McDonald House for 3 weeks. They. Are. Amazing.

The next chapter will be from my husband's point of view. Sorry for my long absentee. February was especially dreary. ;-)