Sometimes things just keep right on coming. It seems like the last few weeks have been pretty "meh" and I feel pretty much in a rut. I'm tired (probably exhausted), and neither kid likes to sleep when I do.
I have started my new shift at work (yesterday) and now I have the whole week until Friday night to do...what? I don't know. Clean probably. I know we are planning an adult get away briefly Wednesday. But other than that...I don't know. I have never had more than a day or two off at a time, now this will be our new normal.
I don't really know how to adjust. I don't like having TOO much time off. Now it may be. But it is what we needed and we'll adjust like we have every single time something has changed.
I have started reading a new (to me) blog, as well as her ebook. Please consider going to the link below and showing this mom some love. Her daughter, Addison, is amazingly beautiful! :)
Please visit this Mom, here
She is one strong lady.
Bear with me while I try to contain my excitement that I don't have to leave at 11pm to go to work! The only downside to going to bed tonight is that I have to be up early for an appt for me. Prayers for that would be appreciated.
Hope everyone has a great week!
E.
Monday, March 26, 2012
Sunday, March 25, 2012
An emotional post-A week in the making
Sometimes I can spew out words and not think twice. Sometimes, like now, for instance, I sit on a post for days (or weeks) without posting because I can't get through it without crying. Some posts are more emotional than others, and some just take time. If you are a special needs parent, then this post will probably hit closer to home. If you are not a special needs parent (or family member), please TAKE THIS POST TO HEART! You never know when what you say to someone will scar them.
When I gave birth to my son 6 years ago, I had just turned 19. We knew prenatally that he was going to have Down Syndrome, but we both decided that we could handle it with the education that we knew we were going to need. Both of our families supported our choice to have Elijah, and many times it wasn't just us that went to our ultrasounds. We also knew that he was going to have a heart problem that was going to require surgery, probably sooner than later.
He was born on a cold February night. The days prior to his birth were great, I was finally able to get out and move around after months of being in either the hospital or the bed. We were planning a c-section (due to his heart) the middle of February. He was due March 7, 2006. We thought that would give us plenty of time to deliver him without worrying about him coming early. HA!
Little man had other plans. He was born at our local hospital at 21:06 on 2/1/06. He wanted to make sure Momma could NEVER forget the time he was born! :) After spending a few hours in the nursery (we were not allowed to hold him, only gently touch his hand) the Children's hospital had sent an ambulance for him. I had to let my little man go. After only briefly seeing him and not holding him...I had to let him go with people I didn't know.
It was a rough night of no sleep. But finally I was able to go to Children's Hospital to see him where I spent the next 3 weeks. Finally I convinced them that the nursery down home could teach him to eat, and we were reverse transferred back.
Now fast forward 4 years. He is now 4 years old, and we have gotten additional diagnosis. He now is completely deaf, and has been diagnosed with Autism. He's had a Cochlear Implant (unsuccessful), and heart surgery.
For some reason, complete strangers think it's ok to not only stare but sometimes actually speak. Nothing makes me feel better when I get negative comments than knowing Elijah will never have to hear them.
WARNING:
The things you are about to read are things that have been said to me personally. They are comments from real (as real as you can be!) people. They are not really that polite, and really, they are very painful to relive. So please, upon reading, know that everyone has feelings and please do not repeat the things you are about to read to anyone!
*WHY WOULD YOU CONTINUE TO HAVE CHILDREN AFTER HAVING THAT? (POINTING TO ELIJAH)
*HE WAS GOD'S WAY OF TELLING YOU TO NOT RE-CREATE AGAIN.
*WHY DIDN'T YOU ABORT HIM? YOU BOTH WOULD HAVE HAD BETTER LIVES.
*YOU ARE SO YOUNG, WHY WOULD YOU DO THIS TO YOURSELF?
*YOU SHOULD GET RID OF HIM, HE'S ONLY GOING TO MAKE YOUR LIFE HELL.
Ok. Now, each of the times things are said to me, I try to put myself in the person who is saying them's shoes. I try to think, "They aren't educated, they aren't educated." But, then Mama bear comes out and I want to kick ass. So, let me tell you how I responded to each of the above comments.
1. RaeLynne was getting ready to come home and me and Elijah were in Walmart getting last minute things for her homecoming. I was on emotion-overload. The woman saw all the things in the cart (most were pink, some were way too small for Elijah) and thought she should speak. After gathering myself, I stepped back from the cart, and looked her in the eye. I said, "Listen, I had a baby 14 weeks early 4 months ago, and she is just now getting ready to come home. I have been by her side daily for the last 4 months, and the first thing said to me by an outsider is what you just said. He is not a THAT, he is my child. And thank God, because I would feel sorry for him if he were YOURS. I'm pretty sure you should continue your shopping and never speak like that to a stranger again. You never know what they are going through. You could have just sent me over the edge, had I not had a stable head on my shoulders. Got it?"
She just looked at me, lipped "I'm sorry," and walked away quickly. I doubt she speaks to people in public again.
2. This came from a woman with 5 children under 5 in her cart. They were flithy, looked hungry, and honestly I would have loved to take them out of her cart, put them in mine, and take them home with me. I wanted to ask her if she had heard of birth control, but I controlled myself. I simply said, "This is my life, not yours. You look like you have your hands full, maybe you should just move on." And I walked away.
3. "I didn't abort him because he was my child regardless. And you may have been able to live with yourself had YOU done that, but I couldn't. I would NOT have had a better life, I would have been miserable. He has a great life, and it was better before you came into it."
4. Yep, someone has said that. "I didn't do this to myself, but I am glad that it was done to me. He is the best thing that has happened to me." This was before RaeLynne.
5. Because people do that? My life my suck at times, but in no way has HE made it hell. I don't remember even responding to this a-hole. I'm pretty sure I wanted to punch her, so I moved on.
People, please. Think about what you are saying and who you are saying them to. If our children are a tad older, then we have probably been through the routine. It may take all we have to not slap you in the face. We are more than likely sleep deprived. We are usually hungry and grouchy. We will not second guess our selves when we respond to you.
The first time I heard this song, after I stopped crying...I realized that this is all the things I wish I could say to Elijah!
When I gave birth to my son 6 years ago, I had just turned 19. We knew prenatally that he was going to have Down Syndrome, but we both decided that we could handle it with the education that we knew we were going to need. Both of our families supported our choice to have Elijah, and many times it wasn't just us that went to our ultrasounds. We also knew that he was going to have a heart problem that was going to require surgery, probably sooner than later.
He was born on a cold February night. The days prior to his birth were great, I was finally able to get out and move around after months of being in either the hospital or the bed. We were planning a c-section (due to his heart) the middle of February. He was due March 7, 2006. We thought that would give us plenty of time to deliver him without worrying about him coming early. HA!
Little man had other plans. He was born at our local hospital at 21:06 on 2/1/06. He wanted to make sure Momma could NEVER forget the time he was born! :) After spending a few hours in the nursery (we were not allowed to hold him, only gently touch his hand) the Children's hospital had sent an ambulance for him. I had to let my little man go. After only briefly seeing him and not holding him...I had to let him go with people I didn't know.
It was a rough night of no sleep. But finally I was able to go to Children's Hospital to see him where I spent the next 3 weeks. Finally I convinced them that the nursery down home could teach him to eat, and we were reverse transferred back.
Now fast forward 4 years. He is now 4 years old, and we have gotten additional diagnosis. He now is completely deaf, and has been diagnosed with Autism. He's had a Cochlear Implant (unsuccessful), and heart surgery.
For some reason, complete strangers think it's ok to not only stare but sometimes actually speak. Nothing makes me feel better when I get negative comments than knowing Elijah will never have to hear them.
WARNING:
The things you are about to read are things that have been said to me personally. They are comments from real (as real as you can be!) people. They are not really that polite, and really, they are very painful to relive. So please, upon reading, know that everyone has feelings and please do not repeat the things you are about to read to anyone!
*WHY WOULD YOU CONTINUE TO HAVE CHILDREN AFTER HAVING THAT? (POINTING TO ELIJAH)
*HE WAS GOD'S WAY OF TELLING YOU TO NOT RE-CREATE AGAIN.
*WHY DIDN'T YOU ABORT HIM? YOU BOTH WOULD HAVE HAD BETTER LIVES.
*YOU ARE SO YOUNG, WHY WOULD YOU DO THIS TO YOURSELF?
*YOU SHOULD GET RID OF HIM, HE'S ONLY GOING TO MAKE YOUR LIFE HELL.
Ok. Now, each of the times things are said to me, I try to put myself in the person who is saying them's shoes. I try to think, "They aren't educated, they aren't educated." But, then Mama bear comes out and I want to kick ass. So, let me tell you how I responded to each of the above comments.
1. RaeLynne was getting ready to come home and me and Elijah were in Walmart getting last minute things for her homecoming. I was on emotion-overload. The woman saw all the things in the cart (most were pink, some were way too small for Elijah) and thought she should speak. After gathering myself, I stepped back from the cart, and looked her in the eye. I said, "Listen, I had a baby 14 weeks early 4 months ago, and she is just now getting ready to come home. I have been by her side daily for the last 4 months, and the first thing said to me by an outsider is what you just said. He is not a THAT, he is my child. And thank God, because I would feel sorry for him if he were YOURS. I'm pretty sure you should continue your shopping and never speak like that to a stranger again. You never know what they are going through. You could have just sent me over the edge, had I not had a stable head on my shoulders. Got it?"
She just looked at me, lipped "I'm sorry," and walked away quickly. I doubt she speaks to people in public again.
2. This came from a woman with 5 children under 5 in her cart. They were flithy, looked hungry, and honestly I would have loved to take them out of her cart, put them in mine, and take them home with me. I wanted to ask her if she had heard of birth control, but I controlled myself. I simply said, "This is my life, not yours. You look like you have your hands full, maybe you should just move on." And I walked away.
3. "I didn't abort him because he was my child regardless. And you may have been able to live with yourself had YOU done that, but I couldn't. I would NOT have had a better life, I would have been miserable. He has a great life, and it was better before you came into it."
4. Yep, someone has said that. "I didn't do this to myself, but I am glad that it was done to me. He is the best thing that has happened to me." This was before RaeLynne.
5. Because people do that? My life my suck at times, but in no way has HE made it hell. I don't remember even responding to this a-hole. I'm pretty sure I wanted to punch her, so I moved on.
People, please. Think about what you are saying and who you are saying them to. If our children are a tad older, then we have probably been through the routine. It may take all we have to not slap you in the face. We are more than likely sleep deprived. We are usually hungry and grouchy. We will not second guess our selves when we respond to you.
The first time I heard this song, after I stopped crying...I realized that this is all the things I wish I could say to Elijah!
Jason Mraz
I won't give up
This is another song that I wish Elijah could hear. And every time anyone wants to butt heads with me, I just say, He's Mine.
Rodney Atkins
He's Mine
...He's mine and he'll always be the best thing that's ever happened to me. You can't turn it off like electricity, I love him unconditionally. I'll take the blame and claim him every time!
E.
Friday, March 23, 2012
A nap will do a Momma good!
Unbelievably, both of my children napped today. At the same time. For a long time. Elijah went to sleep around 2 pm and it is now going on 7 pm and I can still hear him snoring...lol. Rae slept for a few hours, work up for a drink, her rescue inhaler, and went back to sleep. It maybe that it's kinda hot in here (our central air hasn't been installed, yet) or just growth spurts. Whatever the reason, I am THRILLED. You don't even know! I have been able to take a nap myself, and have sat in my room, in the dark, alone, for over 2 hours. I am spoiled now. I don't know anther to wake them...or let them sleep. I know they'll probably be up all night if they sleep much longer...but my Mom always has said "let a sleeping baby lie," or in my sisters and I case as children growing up, "let adolescents lie..." lol! We rarely got woke up if we went to sleep after school. I pretty much follow this rule too...unless we have somewhere we HAVE to be. And since it's Friday night, it's pouring rain, and 7 pm, there's no where we need to go!
They both look like they're growing, and we've tried to stay busy during the week after school. Guess it has helped wear them out!
Today was my last day working third shift during the week. My schedule was Monday thru Thursday nights. I missed Elijah getting on the bus, and I only got a few (if any) hours of sleep because of lil sis or him getting off the bus.
But finally, Daddy has taken on more hours at work, so I cut back a little bit, and totally re-did my schedule. Now I will be working Friday thru Sunday nights, third shift. I will only miss one morning of school, and will get to go to bed when everyone else does. I am hoping I won't be so. darn. tired. all. the. time.
We are going to be having some major changes in our lives in the next few months. Schedule changes, multiple procedures for the kids (mostly Elijah) at Children's hospital, summer break, Elijahs transition to the big school, and maybe some other yet-unnamed things!
I am looking for activities to keep the kids busy after school and this summer. Any ideas? Preferably not completely outside as both kids can't handle heat or sun exposure for very long. Me and Elijah went to town yesterday and
walked the local "mall" for a while, just to be in the air, out of the heat and sun.
If you have ideas, send them in a comment or to me on the Facebook page.
Happy Friday!
E.
Wednesday, March 21, 2012
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.
Sunday, March 18, 2012
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.
Sunday, March 11, 2012
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.
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.
Friday, March 9, 2012
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.
Chicken Nuggets (specific brands, mind you!)
French Fries
Sausage
and last but not least, hot dogs.
We have nicknamed this the Autism diet.
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.
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.
Monday, March 5, 2012
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.
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.
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