A day of celebration

Today we celebrated what was our boy's very first diagnosis----Down Syndrome. Yes, you read that right...we celebrated!!! When I got the call many years ago that our son would be chromosomally enhanced, I won't lie, I was petrified. I was scared, I didn't think I could handle it. I would only be 19 when he was born, and knew NOTHING about DS. the way it was laid out for me was anything but pleasant, but he showed everyone that he IS pleasant (most of the time). Our celebration started when we picked him up from school. We then went to lunch, and did some browsing for summer clothes/shoes for him. He was one tired boy (we interrupted nap time!!) by the time we got done. He then got to go visit with his aunt, and after coming home, we cuddled for a while and now he is about ready to go to bed. 6 1/2 years ago, when my life changed forever...I didn't know what DS would entail. We didn't know then that he would be deaf or autistic, but none the less...I am PROUD to be his mom. I am proud every time someone smiles at him, and even prouder when I tell that nasty woman off that is staring at him like he has worms coming out of his ears. I am proud of every achievement, no matter how small. I am forever greatful that I got to have him as my son. When you celebrate DS, you also remember those that may not have their childen here with them on earth. I have many dear friends who have lost their children way before their time. My heart ached for many today that may not be celebrating per se, but hopefully they know the impact that they, and their beautiful children have on the world. I wish everyone a happy rest of the day!!! E.

Why does it matter what others have to say?

Lots of times you will hear (or see me write) that I don't care if our opinions differ. I raise my children the best way for them, and for us. Our life is hard, very hard. My small children have tvs in their rooms (insert your gasp here...I'm sure), they eat whatever I can get them to, including McDonalds, they don't have set bedtimes; they go when I can get them down, and oh yeah, we are a blended family. My husband and I married when Elijah was just over 2 years old. 7 months later, (and I wasn't pregnant when we got married, she was just born 14 weeks early) our tiny, miracle baby girl had a traumatic entrance to the world. Lots of times, and many different people have told me that I make these things up for attention. That for some reason, my life isn't complicated enough without adding to it. For the last week, I deactivated my Facebook page, and shut down my computer. The things people were saying got to be too much, and quite frankly I don't HAVE to deal with it. I got numerous text messages and calls from genuine friends, worried about why I disappeared from cyber space. Some were worried that things at home went bad, that the kids were sick, or that I had just had enough. The latter was true. "Friends" hadn't really been friends at all, really just watching as I struggled through life. Never asking how I was, never caring that I WAS struggling. I got multiple messages via PM on Facebook (because they couldn't dare face me in the public), saying that I was fake, my children were fake, that I made my life up for attention. Ok. Right. Because apparently people do that? Anyone that knows me knows that I have a lot going on, that a lot of times I wish That I didn't have to deal with any of this. Would I change any of my children for ANYTHING? Hell no. I love my kids, and most of the time, I love my life. What I don't love however, is the Constant negativity. I dont like people and the way they act. I rarely ever let anyone get to me, but sometimes they do. When you see my Facebook page deactivated and the blog not going anywhere...someone has probably got to me. I'm probably upset and I would rather leave cyber space than say what I'd love to say. With that, I will say this. Everyone has their right to their own opinion, they are allowed to say what they want...but when it comes to the point of hurting someone else, they should keep their big mouths shut! E.

Overwhelmed? You're probably not alone

I look around my house today, and I see: so much laundry I don't even want to think about it.  Most of it is clean and just needs put away...however, it has sat in baskets and will need tossed back in the dryer to unwrinkle it.  Then I see that sink full of dishes hubby has promised to wash for the last few days.  I honestly hate running out of paper/plastic plates/cups/forks/spoons because THAT is what happens.  Then I see all the medicines that I need to find a "home" for...because the back of the counter just isn't cutting it anymore.  It's either getting too cramped, or just looks redneck, I don't know which.  Then there's 5 different plates of food I have heated up and made for Elijah since we got home at 4 pm.  He ate a few of the sausages, then decided he didn't want them.  He decided after I got the hotdogs out of the microwave that he didn't want them after all, at all.  The french fries that I took a total of almost 30 minutes (heating up the oven, putting in, and baking) are still sitting in the tray because he didn't want them either.  The chicken nuggets have the same story as the french fries...they have both been left in the dust.

I don't even want to go any farther than my kitchen.  The living room got cleaned this weekend, so it's all good.  Elijah's room isn't that bad, really.  I just cleaned it top to bottom a few days ago.  RaeLynne's room on the other hand...well!  I did take over 20 bags of stuff that hadn't got unpacked from our move in DECEMBER taken to the Special Olympics bin.  Some was picked up by friends, but most went to the bin.  Now, I really just need to weed out the toys that she doesn't play with or want anymore, clean up a little more, and sweep and do the final touches.  I really would love to have a cabinet/shelf of some sort in her room that all her asthma supplies could go in.  Anyways, moving on.  The kid's bathroom could use a good scrub, but it's not dirty.  Take a few more steps into my room, and you'd swear there was just a tornado.  It's the go-to room when someone is coming over and I have a lot of stuff that needs to GO somewhere.  I need to organize, get rid of, and just weed out the crap that I don't need or want.  Hubby did tell me that if I got rid of all the clothes/stuff I don't wear/use in my closet, I could go to the thrift stores 50% off sales at the end of the month and re-buy!  You don't know what that means to a mom that literally wears the same 5 outfits because I have grown to hate the same stuff I've had since pre-kids.  I am taking him up on that offer.  It's not often I get "permission" to buy anything. But hey, I work full time+ hours and I can honestly buy whatever I want to with my money...however, I do know that we have priorities and I don't.  It's nice to hear that I *CAN* if I want!  Then on to our bathroom, and it really could just be cleaned real good.  It's not bad, it's not good, it just needs cleaned.

I am overwhelmed just thinking about what I need to do.  Elijah is watching tv in his room (don't even think about saying a thing to me about him having a tv in his room!! Both of the kids do, and sometimes, it's my only sanity!) When I am busy with Elijah, RaeLynne knows how to turn her tv on and entertain herself for x amount of time while Bubby needs help.

Just a few minutes ago, after starting this post, I heard Rae say "Mommy, Mommy...I KNOW all MY letters!!!  The IPad says so!!!" She loves to work with Elijah's IPad when he's not, and honestly, it has been a great thing for her!  We have lots of letter/number learning apps as well as phonics, reading, and writing apps.  She has really blossomed since he got it!  She can read along with Super Why! and can always answer questions that Dora or Diego ask on their show.  Then I flash back to November 13th, the night before she was born, and the NICU pediatrician had came into my room to tell me her "odds" of making it if she were born in the next few days.  She was born at 26 weeks and I was in the hospital for weeks before having her.  Every few days a dr. like this one would come in my room and let me know how her chances were looking.  At this particular visit, they weren't good.  I think we were up to about 10 percent chance of survival.  Her weight was under 2 lbs, she was very small, and we knew she'd be fragile.  We decided to do my glucose testing that night/the next day...but I NEVER had to drink the nasty sugar stuff...we never got that far.  She came that morning at 8:30am!  So, as soon as I knew we were headed to the OR (I had a placental abruption) I KNEW she was going to die.  I knew we'd be leaving without her, and I knew I may not make it myself.  Low and behold, she was a freaking fighter, and she extubated herself just a few days after being born.  Why is this relevant you ask?  Well, because just a few years ago I was told she wouldn't even survive.  Now, I hear that she knows all of her letters and numbers to 30.  Overwhelming?

Well, yes.  I'm on the verge of tears right now.  But, little man has decided that he wants something else to eat, and since we have went through the 4 things he will eat, I need to figure out what that thing is! :)

E.

McDonalds? Why, yes please!

If you have a child with Autism, you know that you will do anything you can to make your child happy and/or comfortable.  Elijah has a lot of days where he hates to eat anything that I try to feed him...including his favorite 4 foods.  YES...FOUR foods.

Chicken Nuggets (specific brands, mind you!)
French Fries
Sausage
and last but not least, hot dogs.

We have nicknamed this the Autism diet.

Any of the above MUST, and I repeat MUST be drowned in ketchup before the child will touch it!  I honest to God buy 7 lb jars of Heinz Ketchup that has a pump on it, because I go through that much!  I buy one about once a month, and that's if I can get it to last that long!

I will do anything on this earth to make Elijah happy.  Anything.  And before you jump to conclusions and think I haven't tried every single specialist that Nationwide Children's Hospital offers for children with eating issues to try and broaden his horizons, think again!  We see multiple clinics, multiple Dr's., and they all say the same thing.  Try to make his choices as healthy as possible, but at the same time...he has AUTISM and he will eat what he wants and nothing else.

You see, I have a hate/hate relationship with Autism.  I love nothing about it.  I do not love that my child is withdrawn, overwhelmed, overstimulated, and all the other overloaded words that come with it.  I H.A.T.E it.  I hate that it makes his life (and ours, quite frankly) difficult.  Even more so than it already was before the diagnosis.  I have been told that I have a very special, and unique child.  Elijah is not just Autistic, he is also deaf, and chromosomally enhanced with Down Syndrome.  Any one of those diagnosis' may not have been so bad.  Heck, maybe two would have been OK.  But all three?  They quite frankly SUCK.

I can't even begin to tell you how many times I have heard "he is such a special, unique child." Or, "we're not sure WHAT to do for him...he is just so different."  Yep.  Thanks.

I knew, knew, knew that things weren't going to be easy when I had him over 6 years ago.  I knew that.  But then, 2 years ago, our hard, cold world came crashing to a crushing halt.

Autism.

So, in comes the title.  McDonald's.  The love of Elijah's life.  He would LIVE there if I would let him.  He is so happy when he sees the big Arch, and even happier when I pull in the parking lot.  Go ahead and say WHATEVER you want about my parenting.  I do not care.  My child is HAPPY when we are at McDonald's.  He is a different child while we are there.  Is it healthy?  No, not really.  But, I don't care.  I really don't.  It's like he melts into the child I wish he was all the time...every time we are there.  And guess what?  I try to take him a few times a week, just to see that smile...the smile that I rarely see at home.

And you know what else?  It breaks my heart that a restaurant makes him happier than I do.  It makes me cry thinking that a yellow M makes him so happy, and I can rarely get a smile.  His face when he sees it, it's priceless.  So, you know what?  Until he doesn't like it anymore...he will go there on a regular basis.  And not just because he doesn't like to eat any other foods, but because the smile is just something I can not live without.

E.

Do you know what YOUR insurance covers?

If you are reading this blog my guess is you either have a child with special needs OR you have a family member or friend with special needs.  Or maybe you just know someone with special needs.

Let me preface this by saying Elijah has MULTIPLE insurance companies.  Medicaid is NOT his primary insurance.  He has Anthem/Blue Cross/Blue Shield, Medicaid, and then BCMH (Bureau for Children with Medical Handicaps).

Elijah started getting his diapers paid for by Ohio Medicaid when he turned 3 years old.  I received the first shipment of 200 diapers just a few days after his birthday, actually.  I KNEW from friends that it was possible, and when I asked his doctor the month before his birthday, they started the paperwork process so that he would start receiving them right around his birthday.  Now that he is older, and has a substantial need for extra diapers, we now get 300.  There is not much that parents themselves have to do.  I actually was told by his pediatrician that all I had to do was talk to the pharmacy to get the order changed, and they did it all for me!  I picked up 6 cases of diapers the same day!  Also, I had asked if it was possible to get gloves and underpads for Elijah since we will be having others in our house to care for him.  He is MRSA positive and I would like to keep it contained! :) The pharmacy sent the request to the doctor, and I picked up 150 underpads, and 200 gloves with the 6 cases of diapers that day!

Fast forward three years and we are now beginning respite services (the same thing I do for my job, only the person/s come to our house and "relieve" me for X amount of hours).  We have multiple programs here that he is a part of.  The Level 1 waiver, which gives around 7-8 hours a week of a provider (depending on how you use the services, there are different things it can be used for!), the Core program which gives him 14 hours of a provider (thankfully, I have a great friend that works for the company that provides these services, and will be his provider!!), and the Individual Options waiver.  Mind you, these are only the services that I KNOW of.  He was on the waiting list for the Level 1 waiver for YEARS.  I mean, like 3 years.  I found out that the Core Program is a Medicaid program, and doesn't use his waiver money.  He is still on the IO waiver list but we are nearing the top of the list for that.  It pays out a LOT more than the Level 1 waiver so we are hoping to get to the top soon.  You would be so surprised how many people turn these waivers down when they get to the top!!!!

Please...if you do not know about these services...CALL your childs SSA or Caseworker.  Help is available...sometimes you just have to search for it!  Of course, this is just Ohio's information.  I have not bought diapers for Elijah since he was 3.  That is a GREAT thing in itself!  If you have a child with special needs or know someone who does...check into this info!

At the very least, if you have questions, please contact me.  I would gladly help you out!

~E.

When to break up with your child's pediatrician

For a few months now, I have had doubts about our current pediatrician.  We live in a tiny town, and there are literally 2 choices for pediatricians in our area.  The other choice is NOT an option for us.

When Elijah was a tiny baby, he had a lot of health requirements.  He was on "special" formula, was in multiple therapies, had heart surgery, and was just generally not an easy baby.  The pediatrician that we had (it was actually a "group" of pediatricians, but they all sucked in my opinion) was NOT a patient woman.  If you didn't request the same dr you were always switched with someone else in the practice.  I knew too much about the others to choose them.  One was actually MY pediatrician when I was small, and I knew that my mom was not fond of him.  The dr that we ended up being "stuck" with was not nice.  She was cold, rude, and NEVER spent the time in the room that Elijah needed.  If I would call the office for something to avoid the ER or Urgent Care, we ended up at one or the other anyways because it took so long for a response.

I never could get it through their heads that he was NOT a typical in-and-out case, he needed more than a brief look-over and *I* needed to be listened to!  They were supposed to be watching for signs of heart failure and I tried one day to tell them that I thought he was acting strange.  He was turning blue, couldn't get through a feed, and was sleeping.  ALL. THE. TIME!  Of course, it was shot day, and I couldn't get a word in edge wise.  The nurse (who was just as evil as the dr!) was particularly awful that day.  He was crying, a lot.  He was upset and of course they had scheduled him during nap time (and I told them that when being scheduled!). She was not happy with the attitude he had, and it was showing.

She was getting his shots ready, and my 4 month old little tiny guy was waling!  He was so upset.  This bitch crazy woman went off and smacked him in the face!!!!!!!!!!  You talk about shocked!  I could NOT believe what I had just witnessed.  It took me a minute to regain my composure, but then Momma Bear stepped in.  I took him out of her arms, and told her as nicely as I could handle, to get the HELL out of our room!  She begged me not to tell, that she was sorry...etc.  I told her too f'ing bad...and went straight to the charge nurse.  I was assured she never acted like that before, that it was an accident, and even that I imagined IT!  Oh HELL no!

An hour later, I had withdrew him from the practice, and vowed to never return.

So that is why I will never take Elijah to the #2 choice of pediatricians in our area.  Now, on to tell you why I am breaking up with our current ped.

Dr. A. is a good man.  He is patient, he is kind.  BUT, and this is a huge BUT, he is not a special needs dr.  He gets overwhelmed with both of my kids.  (They each have 2+ charts because they are so huge, and Elijah just started #5.) I was going to give him a chance to prove with Elijah's changing needs and RaeLynne's asthma that he could handle it.  Clearly, he can NOT.

For the last 3 appointments (2 for Rae and one for Eli), he has been in their room a TOTAL of 15 mintues, MAX.  The last one, for Eli, we WAITED for over 3 HOURS to be seen for 9 minutes and 14 seconds.  Yes.  Less than 10 minutes!

He argued about prescribing antibiotics (I know they are over prescribed, BUT when a child clearly has an infection, along with other health issues that could be fatal if the infection was not treated, then he MUST help them!)  He said that he didn't want to give him the Rocephin shot (I requested it because it helped SO much the last time he got it), but he said NO.  He said that insurance companies will only pay for one a lifetime.  Um, is it made of GOLD!?!?!?  He then said he would give him Amoxicillan.  Ok, Amoxicillan has not helped him for over 4 years!  We are on to the big guns, like Keflex or Bactrim.  Elijah has MRSA and sometimes has large boils that will fill with pus and need lanced.  This was one of those times.  But, he is so strong and they hurt so bad, we decided not to lance it.  I just wanted the shot to make sure he got ALL of the anti's, and so that it would help immediately.

But alas, he thought for a minute I wouldn't argue and would take the Amoxicillan.  WRONG.

I argued with him for 4 of the 9 minutes that he was in the room, and finally he gave him Clindamycin but then tells me AFTER the shot that he would also need 10 days of 2 pills a day.  W.T.F!!!!!!!!!!!!!!!!!!!

So, now, I am conviced.  It's time for this ped to go.  I don't care if I have to drive 1.5 hours to the Children's Hospital pediatrician.  I will.  I'm tired of him thinking that my kids are just the typical 4 minute in-and-out patients.  They are most certainly NOT.

I am also tired of calling into the office for a valid reason, and not getting called back for days!

But on a good note, MY dr is also a general practice dr and accepts children.  My mom, grandma, and uncle all see him.  When you call the office, you talk to a live, real person that is in the office (the secretary that you sign in with, or sometimes the nurse!).  There is always a nurse available, or she will return your call immediately if she is in a room.  He knows ALL about both the kids (we all talk about them, a lot!).  Also?  He spends AT LEAST 30 minutes in the room with his patients.  Nothing is missed.  He talks about his family, about how things are going in yours, and is generally a nice man!  I have a call in to the nurse now to see if I can get the kids switched over to him.  He isn't accepting new patients, BUT, since he sees 3 generations, he IS possibly willing to see the 4th!  Please keep your fingers crossed for me, and the kids!  This is HUGE!

E.

In a humongous rut

For the past 6 1/2 years I have dealt with a lot.  A lot of people.  A lot of Drs.  A lot of Mother's (and I use that term lightly).  A lot of people that just think they know it all.  Well, let me be the first to obviously tell you.

YOU DO NOT KNOW IT ALL.

Oh how I wish my life was as simple as the teenager that has multiple children just for the gov'ts assistance.  Every child, "perfect," despite the drugs that she was on full term.  No, it is not my place to judge, but (and I KNOW a ton of you feel this way too), WHY do those of us that do everything right for our entire pregnancies have the hardest struggles?  Someone once told me that these girls that have the seemingly normal children wouldn't be able to handle ours.

Well, that's fine.  But, it's not fair.  NEVER will it be fair.

There are people in my life that I wouldn't think twice if they weren't anymore.  People I'd like to smack upside the head so hard, they'd be feeling it for a while.  But alas, I sit here and just be upset that my children suffer and have suffered most of their lives.  Is it healthy to be angry?  Probably not.  But I can't help it.  Let me just explain something that makes me tip-of-the-iceberg-angry.

Rae's seen three doctors/clinics this week.  She was 29 lbs and 36 inches.  So, she's gained 27 lbs and 25 inches since she was born just over 3 years ago.  In fact, her original due date was Friday.  Most people would be over the moon that their child was THAT much bigger than when they started.  Hell, I can never believe that we have came this far, when just three years ago I was sitting in Nationwide Children's Hospital not sure if we'd be leaving with her.

Guess what each and every one of these drs/clinics told me?  Does it help if I tell you I left nearly crying?

"Mrs. Sword, are you sure you're feeding RaeLynne enough?  She's not growing...well.  She's in less than the 10th percentile for height and weight, and hasn't gained much since her last appointment..."

For one thing, I am only 25.  I do not need to be called Mrs.  EVER.  Then I stopped listening.  I felt like I was being told I was not a good mother, and I wanted to punch these drs right in the face.  The fact is, she doesn't like to eat.  She doesn't eat much, and when she does, she grazes.  I swear these people are lucky I have a thick skin by now.  I was so angry...so mad.  Please lets not forget the child weighed less than 2 lbs at birth.  Please.

So, we will be changing pediatricians (something I've needed to do for a while now), and we will not be going back to the WIC office.  Less than $50 in groceries a month is not worth how I felt when I left there!

--Elisha