Monday, February 27, 2012

It's all gone to sh*!

So as raising a child with special needs isn't enough...what it entails on a daily basis is crazy! First you get the worrying about his health. Then you have the meds, feeds, therapies, specialists, doctor visits. Oh, lets not forget the much needed help because...well, lets face it, who wants the burden watching a special needs child for a few hours. The grinding of his teeth, the unable to talk and tell you what he wants or gets tiring. Its better to just ignore and don't ask...I guess, out of sight-out of mind is the key phrase here. And I guess after this little event, I can understand (in a way) why!
While I'm in the middle of changing loads of clothes (I think it was load 14 to be exact), I brought up a basket of towels and Sydnie walks past Kenny, who was standing in our living room (which was our dining room but we changed it into a living room...or...a family room if you want to call it that) and makes a comment something to the effect of..."Oh Kenny (using her quiet, flower child meets nun quality tone that she has), what do you have on your hand? What, where did you get chocolate...from?
Wait...ummm...ummm...that's not!!!! MOOOOOOM...Its NOT CHOCOLATE!" As her quiet demeanor turned to some crazy screaming, psyco hair band dude screaming a high pitched song lyric! Kenny had POOP on his hand! Hmmmm...I thought to myself. I gently put the clothes basket on the dining room table and walked over to take a closer look for myself. Kenny is standing there holding his hand up and out in front of him like he was a surgeon with freshly scrubbed hands. But alas...that chocolate coating covering his fingers was not the sweet smelling, much craved for was poop. At that point, I grabbed his wrist and quickly ran over to the diapers and wipes stash that I conveniently have placed under the TV stand. Grabbed oh, about 50 wipes and started wiping and wiping...and then if that wasn't enough, I still had to change the diaper from he** and all of its components! Even though I had 8 kids, poop still gets to me. I dont do poop very well and was gagging and about to puke the whole time.
Having a child who is almost 5 still in diapers is bad, but when said child has the mentality of a 2 year old...who thinks digging in ones poopie diaper is a fun and exciting experience...then you've got trouble! This has happened twice already...for me anyhow. I think my husband had this experience a few times as well.
My poor son will be having chapped hands for a while to come due to the fact that I think I scrubbed them with soap and washcloth till they were raw...then the hand sanitizer came out and was used!
God must really think I can handle all this sh*t....literally!
Which leads me to one last thing. Kenny decided to get hold of my computer, while I had it on my blog edit posts/new posts....and he, well...deleted my last post titled Little Reminders. I have a favor to ask. Could you, my readers look and see if you copied or read and it was saved in Google Reader? Because it is gone. He deleted the entire body of my poem that I spent days on. I guess it was my fault for not writing it in something else and then saving it to my blog, but I didn't. So if you could just take a look and see. If you can pull it up and have it somewhere, please let me know. I am beyond sick over this. I am hoping that blogger or google has it somewhere in cyberspace. This is another one of those instances...ugh.
Gotta love that crazy, little miracle kid of mine!

Friday, February 24, 2012

To whom it may concern:

Ok...the joke is over. You can take the curse off! You can stop with testing us now! You win! We did nothing wrong yet you feel the need to keep the fight going. Thank you for the test of our strength, purpose, love, compassion for others, family closeness, work ethics (in which we basically give our services, our God given talents to help others rather than charge an arm and a leg for them), and our sanity. It has been tough but these last couple of days have really been the kicker!
I'm giving my time and cupcakes for our church fish fry again and have basically been in a downwards spiral since the planning. Last year we were more financially stable and I had a huge oven to use...that is, until it exploded a few months back. I now have a much smaller one which only makes a few dozen at a time...not to mention the burning it likes to do to all my food! then to top it off, my time is extremely limited...Kenny has been a huge handful lately, and we are working with his therapists for that.
Last night, our kitchen sink faucet decided it was just going to stop working...and we just got it a few months, no working kitchen sink...while making cupcakes...JOY!
...Tony just got brand new tires on his work van a few months a go....back tire completely flat. van has something wrong with the back breaks (at least that's what the grinding in the back end sounds like).

So see...please give us a break. We are good people who live simple and god loving lives. We dont ask for anything from anyone, help others, and love our kids and each other dearly...but these issues/tests that we have been faced with (there are several more but I don't want to get into it) have been trying on my husband, myself and our kids. (Not to mention I have to make 300 cupcakes today).

You know who you are...thank you for thinking of us, but these tests are no longer needed. We just want a smooth, and somewhat easy life from this point on.
Thank you

Tuesday, February 21, 2012

A birthday, a meltdown and one tired mom

We celebrated my daughter Morgan's 11th birthday on Sunday with a big family and friend party...nothing fancy, no bowling, no swim party, nothing showy or over the top...just a nice, old fashioned house, food, cake & ice cream, family and friends...and guess what? Everyone actually had a great time! She got a lot of really nice different than when she was 10. Gone are the days of when requesting toys. It's all about gift cards, clothes and accessories! She played with her friends and showed off all her little cousins/second cousins to them like a "proud of my family" type of kid that she is, and then when the party was over, had a sleep over. So the party just kept on going!

Monday, on the other hand was much, much different...
Kenny had his speech therapy and his occupational therapy at the he does every Monday. Except this Monday he chose to show his meltdown side....for the whole commonplace area of the hospital to witness. It was following his speech therapy in which towards the end of, his therapist (whom is a replacement for the one he loved) nonchalantly mentioned to me that the Cleveland Hearing and Speech center would be much more helpful...well...resourceful and able to help Kenny with using some kind of it voice or sign. Because of his unability to pick up on...errr...uhhh...understand things clearly. I told her that he did go there a few years ago, but because he missed many appts due to his immune system and lungs being so weak (and being in the hospital much of the time), that they pretty much told us bye-bye and discontinued their services for him. I WOULD go back there but it is located much farther away than where he goes now...and with a 12 passenger van, our gas budget is already at it's highest (insert disturbed and upset face here).

I was honestly at a loss for words because of what she was saying to me! What, didnt she want to take that extra little bit of time and work with him? Didn't she think she could help him? His other speech therapist that left never was unhopeful or looked/acted as if she didn't want to be there or teach him signs or show him how to form sounds into words! This one I see getting frustrated with how he won't talk back or do what she wants...I guess that twenty-odd minutes that she works with him (once a week) must be the toughest part of her week! Ugh!
So as we left that lovely therapy session, I was feeling a little sad at the fact that now is when the "pushing the special needs child on someone else" starts. I was wondering when it was going to happen...well, it just started.

Fifteen minutes between therapies...
I had just enough time to run to the main (common) area to get a cup of coffee and a bag of chips like we always do and that is when all he** broke lose. My beautiful miracle of a child decided to scream, fall to the ground, ripped the hearing aids out of his ears and throw them in different I'm juggling my purse, his coat that I was carrying and a very hot cup of coffee...I reached for the hearing aid closest to me and spilled my coffee all over myself and the ground. All the while, people are staring at the bad mom that can't control her spoiled, screaming child in the middle of the hospital. Who at this point is scrambling after the second hearing aid AND one shoe that said child has now decided to take off and throw. I just knew the other shoe was next...followed by the shirt if I didn't calm him down...and fast. Oh where was the duct tape when I needed it the most (to tape his shoes on around his feet and legs so he wouldn't/couldn't take them off....what did you think I was gonna us it for?!).
After about 10 minutes of utter horror, I finally got him calmed down which was a miracle in itself! I couldn't bribe him because he really didn't want anything...he just threw a fit because I got fritos rather than my usual, pretzel nuggets like I always get...and he just flipped. This is classic example if how bad his OCD is getting. And then off to OT we went...and he was fine...I on the other hand was ready for a straight vodka shot and a padded room!

OT went much better than speech and our coffee break...thank GOD! We actually made it out of there with some progress. She got him to try to eat small bites of the Fritos that I bought. She also tried to get him to drink from a cup, which was a huge fail. Yes, my son who is almost 5 still drinks from a bottle....and no...I'm not a lazy mom who hasn't tried to get him to drink from a cup (I've tried several kinds...and he just can't get it) so no judging please.
So there you have it. A tired mom after a busy weekend along with a very high maintenance, special child...doesn't get much better than this!

Friday, February 17, 2012

The stressful life of an older micro preemie

The mornings go something like this....
Wake up at 5 am to enjoy a little bit of me/quiet time. Wake the kids up for school....wake them up again...and finally one more time did the trick! I make sure the kids put their clothes, socks, shoes, backpacks with all homework in it, and anything else they need, out the night before. This usually means that I am running around like a crazy mom trying to find one thing or another in the mornings. They are finally up...all 6 kids, that is everyone is up except for Kenny whom I try to let sleep as long as possible because I know when he gets up, the morning...the tranquil for the most part morning will be totally interrupted.
uh-oh...he's up! Darn...this is waaaay to early for him to get up! I have to iron some pants and a shirt or two, look for Kayleighs missing school shoe, break up an argument between sydnie and Morgan, sign a few papers that were given to me last minute...because my kids just...well...forgot to give them to me.
ok, all is ok...he's got his bottle of pediasure and his "taggies" which are the pajamas with the snap over flap covering the zipper...yes, he's the only kid I know that has always loved this taggies! I have to make sure he has his clothes out for preschool, especially his shoes. Oh the shoes...his biggest obsession! He HAS to have them on as soon as he wakes up in the morning or he flips out. It has since gotten much worse of an obsession as to now he is obsessed with making sure I have my shoes on and Gina has her shoes on. When I tell him no, all he** breaks loose! The quiet setting has turned into the worst stress scene you've ever seen! The screaming at the top of his lungs...and it's a high pitched scream...followed by the occasional head banging, removal of his shoes (which are then thrown), his socks go next and finally his shirt and pants! He has tried to remove his diaper but I've caught him before that point. If he'd of had his hearing aids in, those would be taken apart and thrown all over the house where we'd have to search for them for hours!
These breakdowns just don't happen here at home in the mornings...Nope, they happen all day long here, it happens at the grocery store, church, basketball games, restaurants, etc...they have made me/us a prisoner of my own home! I though RSV season was bad...this is by far the worse thing I've had to deal with. We've tried time outs on the couch, a smack on the hand, ignoring and several other discipline ideas...the thing is, he knows some things, but still developmentally delayed as to not understanding everything.
I am lost, down and extremely discouraged about this...and it's just getting worse! I've put calls onto his neurologist, his comprehensive care docs, and also his autism worker that is working with us with the P.L.A.Y. Project...I'm just feeling broken right now. I guess this is what the doctors have warned me about...and I never thought he'd be like this. I feel so bad because I'm trying to do the right thing but I don't know what it is. His OCD had gotten so bad and I'm scared.
Are there any other mom/dads/guardians out there that have had an older micro preemie going through this PLEASE help me. My heart hurts for him, my stress level is well beyond my limit and I just need encouragement that this is fixable.

Wednesday, February 15, 2012

Reason one million and one...

Why I love and admire my very strong (and challenging at times) son...and fight every day for prematurity and the repercussions it has on a person...not only on the child, but the parents & siblings.
His feeds are going so-so. He fights us on some of them along with trying to take off his backpack. He is trying to eat a little more and THAT is a great thing!

Tuesday, February 14, 2012

Happy Valentine's Day

We had a wonderful and quiet Valentine's Day! I made my little crafts for the kids to take in for their valentines to pass out. Gina and I made and surprised everyone with valentine cookies...and I made all my little loves their very own valentine from me to them!

Friday, February 3, 2012

A reason for all of this...

As you know, I've been having a hard time of things lately and feeling like I have no sense of self...who I am. I feel like just a mom, a maid, a mother of an angel baby, a caregiver to a special needs child...not exactly what I hoped to be...minus the mother part. Life has been overwhelming as of lately and I let myself fall into the self-pity trap. Part of this is because of lack of sleep, having been sick for a few weeks, and then there are some other issues...
So as of this morning, after a WONDERFUL full night of sleep, (Yes, Kenny only woke up one time...and no, I didn't have his feed hooked up to him. I think it was also because he woke up at 5 AM the day before, and he was going, going, going all day long...until he finally passed out at 7:30!) I decided to start the day off on a positive note. I worked out (which I stopped for a few weeks), and started to really work on potty training comments about her being 3.5 and still in diapers...she is very close to her brother Kenny and he is nowhere near being potty trained, so she feels/felt that she didn't want/need to use the toilet. Well, she went "number 2" on the potty twice already and is doing an awesome job! YAY!
Then, to top everything else off, I decided to help Kenny learn to put his shoes on....
Don't mind the sideways filming...I had no idea what I was doing.

The reason for this post is to let everyone know that I still feel like my life has been put on standstill and that I really don't have time for myself and what I REALLY want to do....but helping my kids...seeing how excited Gina is for going on the potty and especially Kenny with working on putting his shoe on....I am the proudest mommy ever. My reason for being here is this...and I was chosen to be a mommy to a special needs/chronically ill child for a reason. My days are filled with teaching, helping, medications, calming, lots of worrying and stress...its basically like taking care of a really sick & colically baby for 4.5 years,  but I just love my kids and my "job" until I can fulfill my dream of owning a headpiece/bridal store.

Just look at the look of pride and excitement on his face! I heart my miracle!

Trying new things thanks to Pinterest

With all the craziness that my mornings bring, from getting 7 kids up and ready for school...breaking up fights for the use of the bathroom, the tattling on eachother, the lost items that the kids can't find, but are sitting right in front of them. The crying and clinging of Kenny and his obsession of having to have his shoes on his feet the minute he wakes up...the breakfast making, the ironing, and the making sure each kid brushed their teeth, got all their papers, books and school stuff packed in their backpacks...I got a little crazy and creative this morning with the girls hair. All they wanted was for me to put it up in a ponytail...but because of MY obsession with the site Pinterest, I am trying to do one (or more) creative things that I find on Pinterest to do every day to get me out of my funk. So these are my creations I did this morning. Now, grant it, I didn't take my time on these like I guess I could have but honestly, I really didn't have any time to with everything I mentioned above going on. I think they turned out pretty good for my first time!
Today hairstyles...tomorrow...building my dream home! Tee hee
BTW...follow me and my boards on Pinterest...if you need an invitation, just send me a comment or e-mail and I'd be happy to invite you!