Hello again... I'm Roo's Mommy, allow me to introduce her Daddy.

It's been nearly a year since I've written.

Sometimes things just happen that are too personal, or isn't my story, and it can't/shouldn't be shared on here. It affects me none the less though, so, that's where I've been. Looking at life and appreciating each moment like it's a gift. Even when I'm at my wits end and I'm telling my nearly 10 year old for the millioneth time, "No, you are not getting an app," I'm so thankful I still have her around to pester me for the heck of it. And when the worst happens to someone I know, when things hit too close to home, a part of me tends to pull into my shell.

Anyway, a long time ago, I promised that my husband would share his point of view on Roo's birth and the first few days in the NICU.

We decided that a Q&A sort of interview would work out best. So one night, we sat on opposite ends of the couch facing each other, while I asked him questions that I had already come up with and a few that just sort of happened as we went along.

At first his answers were short and I had to encourage him to elaborate. The more he started to talk, the more his emotions started to come to the surface. So much so that when our big, orange furball or a cat hopped onto his lap, he started to pet him instead of push him away like he normally would. He is not a cat person.

Things came out in that conversation that I didn't even realize (though maybe at times I suspected). While I don't mind spilling my guts on here, and even though he went into it knowing that I intended to put it on here for the world to see, it's just not fair to him.

Anyway, this is Terry aka Roo's Daddy.

He's a good guy who goes out of his way to help others, even if he's dead on his feet after working a long day.

I admire his faithfulness in attending church, and love his faith in God. I especially appreciate how he's trying to instill Christian values in our daughter, despite her many challenges.

They formed a special bond early on that still continues. When she was finally able to come home from the hospital, I was so jealous of him! I felt like I never got to hold her because she was always crying for daddy. In hindsight, I'm lucky that he was able to be home, and willing to continue to hold her...even if it was frustrating! :-) He is such a blessing, & I love him.

I hope you all have a great Father's Day weekend!

I will write again soon!

- Cassie

Finding Joy In The Middle Of Chaos

One of the most irritating things a person could say to a parent of a special needs child is, "How do you do it?" Nobody chooses for their child to have challenges; it's just something that life hands to you. I have had this said to me SO often...

          (and if you're reading this & you were one of those people, please know that I don't hold it against you and that I know you said it with the best intentions & from the bottom of your heart)

                                                            ...that it has become harder to smile, shrug, & say "I like to think that it's what any parent would do if they had a special needs child." Sometimes there's a snarky comment in the back of my mind, like, "Zoloft & Jesus!" or "When things get rough, I just take a happy pill. Then I suddenly see unicorns pooping butterflies and belching rainbows. That helps a lot."

But really, I cling to the good moments, pray for a better tomorrow, and countdown till bedtime--literally. And yes, medication really does help you cope. Never be afraid to ask your doctor for something to help you deal with the stress of it all if you need it. It's been said that Autism Mom's Have Stress Similar To Combat Soldiers, but I think it applies to parents of children with many other disabilities, too. We face different challenges in some ways, but it all boils down to more stress, more dependence from your child longer, and probably less than ideal support.

Back to clinging to the good stuff.. These are a few of the memories I cling to when we're having a bad day..

Her piggy face that she loved to make when she was a baby.

The giggles and smiles when she splashes in the pool.





The good moments in the middle of the rough ones... like when she started being silly while recovering from the flu a couple of years ago.

                       

When I rode the tilt-a-whirl with her for the first time this summer. We were spinning so fast, and she looked at me with this huge grin on her face. She cheesy grinned me the whole ride 

and it made my heart melt.  

That's how I do it. I find my Joy in the Middle of the Chaos. It's not always easy, but she's worth it.

Confessions of Special Needs Parents - Week One

Happy Monday!

 Thank you, Loving Levi!

Thanks Spectrum Circle!

Next week we will have a "Tales From The Supermarket" theme. If you'd like to contribute, please email me your story at sweet_pea84@att.net with your preferred "handle" or message me on Facebook.

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! :-)

Fighting Insomnia: Battle On

I know that I've been talking about Insomnia a lot lately, but when happens, it affects almost everything. I guess when I slept through the alarm and my GI appointment on Thursday, it was the final straw.

Last night I was in bed by 11 PM, which is way better than 2 or 3 AM, after staying up all day, instead of going back to sleep.  I woke up at 2 am, used the bathroom and went back to sleep. Roo woke me up a little after 7 AM and I had to drag myself out of bed. All morning long I had to deny myself the luxury of sitting too long because I would start to nod off. It literally feels like I've been sleep deprived and I need to make up lost hours of sleep, even though I've had plenty.

I did have a small breakthrough last night though. I realized why it's so hard for me to sleep at night, yet so easy for me to rest during the day--I'm worried about Roo. This dawned on me as I had a slight panic attack getting ready for bed. I was pretty close to deciding between giving up or taking anxiety meds, when I decided to use a favorite old movie as a distraction.. That's right, I cuddled up on a makeshift bed on the couch, and drifted off to the movie "Ever After" the same way some kids need a favorite toy or blanket before they can fall asleep. *Sheesh!* I really am a mess. Anywho, back to Roo.. I have trouble sleeping at night because I'm worried about my daughter having a medical emergency or needing me through the night and no one knows to help her or does help her, because Terry and I are asleep.. And Terry needs to sleep because he goes to work everyday, therefore, leaving me unable to rest peacefully until I reach the point of exhaustion.. (<~ All of this was going through my head while I was having an anxiety attack.) I sleep for a few hours, and then I'm able to get up and get her to the bus stop/school, and go back to sleep, and sleep soundly, until 1 or 2 PM... because I know she's in good hands, and someone is watching out for her.. therefore taking the burden off of me.. That is a major compliment to Roo's school, btw.. It shows how much I trust them. Another thing I realized is that I claim to be a Christian, yet don't have faith enough in God to take care of Roo through the night, and wake us up if she needs us. How hypocritical of me. :-(  This realization has also encouraged me to do better, & remember to put my daughter in His hands each night.

This anxiety has caused me to totally screw up my sleep pattern. And I don't want to embarrass myself by being wrong, but I think that Dr. Google said that things will get better in a few days if there isn't a real underlying problem. Here's a link for those thoughts... Circadian Rhythm Sleep Disorders. Or maybe the anxiety IS the underlying problem.. *sigh* Anyway, I'm still going to try to "reset" my sleep pattern over the next couple of weeks before making a doctor's appointment. At least that way I'll have tried. Maybe I don't have insomnia at all? Because usually I can sleep eventually, just not as well as when somebody else is watching Roo. Sad to say, but this horrible struggle may have started in my head.

My Name Is Cassie, And I Take An Anti-Depressant

Stress can bring out the best & worst in people. As a parent of a special needs child, I have a lot of stress. Everyday stress that all parents have, added stress of avoiding meltdowns, dealing with meltdowns, appointments with specialists, financial stress (will insurance follow through?), and just plain old freakin stress that everybody has. If you're like me, and depression runs in your family on one or more sides, chances are good you're going to need an antidepressant. All that stress is going to eventually kill whatever was repressing that characteristic trait you were born with, and you're going to have to do something about it.

There are all kinds of stereotypes that comes a long with taking medication for depression or anxiety. Your crazy, your unstable, your weak--None of which are true. You know what I think? If you have the courage to tell your doctor that things aren't okay, that you need help, you're brave. And once you start to feel better, you walk around like billboard for happy pills. Suddenly, you just want to spread the love, and people are going to react to you. Don't let them bring you down. Do not be ashamed for taking something that helps you become healthy & stay healthy. Be a part of the movement that breaks those stigmas.

I take an an antidepressant and anxiety medication daily. I am not ashamed. I went for years thinking that something was wrong with me, because I was struggling to live happily everyday. There were lots of tears, lots of anger, moodiness, and it had a negative impact on my health, my marriage, and who knows what else. People would often call me strong and put me on a podium, but in reality, any emotional strength I mustered to get me through a hospital stay and/or home treatment, would crumble into a bout of depression after the trouble passed. How did this effect my health? I am 29 years old & I've had shingles 4 times. Last year a colonoscopy (yes, I had one at 28) revealed 7 polyps, 2 of which were precancerous. I have esophagitis and acid reflux that I have to take  medication for daily. For some reason, nobody has ever given me a hard time about that. I have had only a handful of major panic attacks, but I was having small ones before I even realized what they were. A couple of years ago, a massive one landed myself in the ER, and it started the ball rolling to go back on medication.

I'm not saying that taking anxiety or antidepressant medications sooner would have prevented any of these, but I probably wouldn't have had shingles once. Who knows? And it's not a cure all. I still have bad days, but I have more good days. Sometimes I even get stuck in a rut, but it doesn't last. Please, if you're struggling, don't be afraid to talk to your doctor and get some help. Sometimes just talking to another person about what's bothering you can make a big difference.