This needs to be said.....

My heart is broken, maybe that is not even a good enough word. Shattered, that is a better word. And I think that is the only word that I can think of to describe of when I heard about yet another shooting. It is so senseless....

At school last week my kids were making those holiday crafts with their hand prints and glitter. And I know that while they are skillfully crafting their works of art all they are thinking of is Christmas is coming and Mom and Dad are going to LOVE this! And to think that they will never get to bring them home, and Santa isn't coming for them.....whew. So many lives, senseless....

After the incident in Colorado, Ed and I had several talks on how this happens. Anyone who does this kind of thing obviously suffers from some sort of mental illness.   As it turns out, the Connecticut shooter was no different.   This has caused Eddie and I to draw certain parallels in our life.

According to Fox news this guy had Autism, for one I generally don't listen to Fox, but when I hear Autism my ears perk up. I am NOT going to be that parent who says "Don't blame Autism" or "Don't label my child with that". 

You see, Edwin has a fascination with guns.   We were told years ago by a doctor to never let him have even a toy gun, because he would become obsessed.   That's what autistics do. So, we do not allow him to have a gun.  We have no games that have guns, and he has never seen a war movie or had a GI Joe doll.  (husband:  they are called action figures)  Then, one day at the park, some boys approached Edwin and asked if he wanted to play.

We were on seventh heaven!   He was socializing!   Five minutes later, here comes Edwin and the boys...they are playing war using their hands as guns.   He was hooked.  Then a  few years later he got a Nerf dart thing in his Easter basket.  It was as close to NOT being a gun as you can get.   He proceeded to wait in the car for hours so he could "shoot the thugs" with it. Red flag!   This was premeditation with intent.  

We threw it out that night.

As his parent we have done everything we can to keep him away from that stuff.  He talks to professionals.  He is medicated.  He loves Jesus. 

 And yet, when he is considered an adult, he can legally, and without our knowledge or permission, purchase a gun.   After all, it is his second amendment right. All of the care and work Eddie and I are doing to make sure he turns out as a participating member of society and he can still purchase a gun.  He is mentally challenged!   Even the government recognizes this!   But there is NOTHING preventing him from buying a gun.   Even if there was, apparently gun laws do not seem to apply at gun shows!  

Look,  I understand about people needing it for hunting or protecting their homes. Cops obviously need them to protect citizens, our soldiers use them in war. But why would Edwin need one? He doesn't. But he can get one. Senseless and scary.

I keep hearing people say "Guns don't kill people, People kill people".  Obviously I know that a gun sitting on a table is not going to get up and shoot me like that gun on the Rudolph special that shoots jelly. (I know...jelly)  But when a mentally ill person gets a hold of a gun, whether purchasing one or getting one from their parent's collection, there is less preventing them from going on a shooting rampage than you or me.   They do not have ANY impulse control.  As a parent of 3 kids with Autism, get me help now! Tell me whatever the heck I need to do so that this is not my child doing this.

Now, it is at this point that I would like to say there was more than mental illness involved in this tragedy.   There was definite evil here.  I am not providing this SOB with an excuse or a cop out.   What he did was, in every sense of the world, heinous.

But since people are more concerned with the fact that they have the "right" to own a gun and less with any sense of responsibility, especially when it pertains to special needs, we need to take different approach to this.

If you are going to allow Edwin to get a gun, because he has the "right" too, then you better let me know how I am supposed to keep an Adult Edwin from doing this to YOUR family. Because this kid, who thinks he is a spy can NOT control his impulses, he LIVES in a fantasy world at times still has to be told to eat,  or wear underwear. And why is he like that? Because he is messed up in the head! I don't allow him alone with my other kids or even to take the dogs out by himself because he is not capable. So don't give him a gun!!!!

Please understand...Edwin is a great kid.   He is not a murderer or a psychopath.   He shows no signs of violence or hatred.  He is, at times, a goofball.   But, if his siblings anger him, there is no thought, only reaction.  His impulse is to lash out and hit.   Now, take that impulse, add ten years and a loaded automatic rifle.   I think you see where I am going.

There are things that I will fight till the ends of the Earth for my kids, all my kids to have rights for. But not this...take that right away from them. Don't let me end up as that parent who  is forever living in regret because of my son shooting someone, or dead myself.

I would also add that (soapbox warning) that, as a country and a society, we throw around the words "freedom" and "rights" around entirely too much.   We almost never mention responsibility.   It is a tragedy what happened to the shooter's mother (dead by his hands), but she had a responsibility to recognize that he should NOT have had ANY access to guns, incidental or otherwise.  Unfortunately for her, she paid that price.

Now, for some advice:  If you are a parent that worries because your child shows signs of wanting to hurt people or talks incessantly about getting even or violence,  TELL SOMEONE!!!  Tell your doctor.   Tell his teachers.   Tell your pastor.   Swallow your pride and talk to SOMEONE...and for Heaven's sake,get the guns out of your home!  It takes a week to own a handgun.   It takes less than a second to pull a trigger.  

I once heard someone say if you are scared that you are in over your head than you are probably in over your head. Get some help, admit their is something wrong ( I know it's hard) but it is the right thing to do. For your child and everyone else.

I am the the mother of Edwin, a kid that could grow up and hurt someone. But, I am also a Mother who saw 3 girls that had 3 of my daughter's names scroll on that bottom of the screen on CNN and I don't ever want to see that again.

 

Saturday Mornings at the Holstein's....

Today at 5:30 I woke up to a monotone voice saying "Mother, can I play Poptropica on the computer". If you have not heard that monotone voice in person it is none other than Edwin with his proper terms (Mother), I told him yes but to stay quiet...everyone is sleeping. He then came back to me and asked if he could have 9 oranges. The first thing I asked is why in the world would you need 9 oranges? Are you making a cannon? Pretending your Santa and filling stockings? He simply stated he needed fresh squeezed orange juice. I told him that there is a gallon of OJ in the fridge and stay the heck away from the oranges...and of course to be quiet. After hearing that he opened the juice which was no small feat, he finally left me alone to doze off. Then I heard Melody come down the stairs screaming and I mean screaming why no one had got her up for breakfast! I told her it was only 6, she has missed nothing. She pointed out that Edwin already had juice...I told her to watch TV in her room. 10 minutes later I hear her screaming again because she can't find the remote and she HAS to see Dora. I realize that I have lost yet another Saturday of sleeping in and open my eyes to see a banana about 2 inches from my eyes. It was Tobey, staring at me wanting it opened. I am not sure how long that boy stood there with a banana in my face....it could have been 5 minutes. So after collecting myself and realizing that I was not about to be killed with a banana, I turned on the living room TV while Tobey ate. I told Eddie I was way out numbered and it was time for him to get up.

Now Eddie stayed up late watching some Batman movie, and because he doesn't think ahead (I love the man though) he is cranky after having 5 hours of sleep. He goes in and starts cinnamon rolls for breakfast, and guess who comes down? Melody wanting to know why Tobey is eating a banana and she hasn't been told. Edwin then comes in the living room doing jumping jacks and asked Eddie if he knows Major Xavier (Edwin is a spy in his mind) Eddie says no that he doesn't know him. Edwin says that Major Xavier hates him.

Back to Melody who thinks she is getting the raw end of the deal as far as breakfast goes in the pantry and grabs a back of Ritz crackers and brings them in the dining room. Edwin and Olivia then get in a fight with Melody because she is eating way too many crackers. Now mind you, the smell of cinnamon is wafting through the house...breakfast is coming. I break up the fight only to see that Melody only has 3 crackers in her hand...she is not eating the whole box! No idea why there is even a fight.

Emily then feels the need to be a commentator and tells me that Melody is over the cracker incident and then like a miracle a Christmas special comes on and the whole house goes quiet! They are eating and watching Dr. Seuss...life is good! Eddie has dozed off with 3 kids sitting on him and it is my Norman Rockwell moment.

Until, the teenager (Lena) who has somehow slept through this morning finds out that all the cinnamon rolls are gone and then it will be WW III!

So it is 9:17 and that my friends is Saturday morning with the Holstein's. I want to go back to bed!

What was that?

Today in what seemed like endless appointments, I sat in a Dr. office and while wrangling Mr. Tobey Jude and flat out asked about what is the outcome with a kid like Tobey. She looked right in the eye and said "residential care". And I cried. I cried because I know in my heart that could be that precious boys' future, I cried because I hate hearing negative things about my child, I cried because there are days with him that I don't know how I will take care of him when he is taller and stronger than me.

The Dr. then cried (in the same office that I have cried with Dr. Bardwell) because she has a 29 year old daughter at home and that is now her life. And she cried while telling me that she has to tell her friends that she can't go places because she has to be with her. And while some people talk about retiring with her spouses and travelling, she is home being a caregiver. And  how her idea of retiring is so different from her peers. And she explained to me how Tobey could go either way...able to be taken care of at home or going in a "home". She has no crystal ball to let me know how he will turn out as an adult. But, if he keeps going down this path then we simply will not be able to care for him no matter how much we want too.

She told me that we are doing everything right with him, but that is no consolation when you feel like you have failed. I hear those stories about how God gave you this child because you are the "chosen parent", he thought you were "special" enough to handle a life with a child like Tobey. And part of me wants to believe that. But if that is true about God thinking Ed and I are up to the challenge, then why are we having to look into someone else caring for him when he is older?

I have referrals in for genetic therapy, special Dr's , have tried new drugs, prayed daily, given up sleep, drove to hundreds of therapies, fought teachers, given up time with 6 other kids, put a marriage on the back burner, lost friends....the list goes on and on. The first thing I think of when I wake is Tobey, he is my last thought before I sleep. When he goes to school he takes my heart with him, but I breathe because I need a break from the worry.

There are things that I know we have lost because of Autism, going to the movies or anything like that as a family, owning a home is a long way off because of medical debt, me working a full time job is not in the cards. But the thing that kills me the most that I have lost to Autism is Tobey Jude, and I know that is not what a special needs parent should say. I know that we are supposed to thank God for having them, and I do. I do thank God for Tobey. But I am not thankful for Autism today. I hate Autism today, because I want him normal. Dear God, I want him normal, and as a Christian I serve a God who is powerful enough to cure him but I live daily knowing that this is Tobey. He is who he is....there is no fixing this. There are times still that I think about what he would be like. At this age he would be telling me that girls are yucky and bugging me about how many Christmas presents he is getting.

I want to put it out there that I am not looking for pity, but I used to have this blog as a way to let people know what life is like with him, and lately it has been an update of the Holstein's. The updates are a lot easier to write, no tears are shed with those. But to show what a day in the life of the Holstein home really is I need to let you in and see it.

So, after the appointment I came home and got Eddie and had him drive Tobey back to school. We talked about what the future holds for the little dude, picked up 2 more kids for appointments, went to the IEP, Eddie went to work. I picked up the rest of the kids from their thousands of activities, fed them and did the Gangham dance. Medicated the crew and sent them to bed. And tonight I will head to bed and I will pray for him with his upcoming EKG....and then do it all again tomorrow. Because that is what you have to do as one of those "Special Parents", you suck it up, stop crying and get through another day.

Wassup?

Hello blogging world! How is it going? Me? We have actually had a pretty boring week compared to last week, at least.

So if you haven't heard Miss Alison is on crutches. She was at school and was playing dodge ball and felt a pop in her knee and went down. She has also hurt her other knee in the past 4 months playing dodge ball at the Boys and Girls Club. I think for her personal safety she needs to stop playing dodge ball for heaven's sakes! Anyway, we find out tomorrow if she is going to need surgery since she did more damage this time than last. Yesterday I was picking her up and I watched her walking on crutches on the sidewalk and then look the other way, almost falling off the curb. And then I realize that we are lucky she has only been on crutches once. She is the most accident prone child we have...yes she was the same one that gave herself a concussion at school because she she sneezed so hard that she hit her head on the table at lunch time.

Miss Melody hit her head at school and it was looking scary for a few days but she is now back to her weird self again...now that I think of it she is a LOT like Alison was. Lord help me, we only need one Alison around here.

So the rest of this week we are going to 4 Dr. appointments, 2 therapies, 2 IEPS.....nice. And this is why I Melissa Holstein can simply not work at a factory job.

I put in a good effort with that factory job, I even enjoyed parts of it. But getting up at 5am for this mama of 7 is not in the cards. And doing manual labor and then picking up kids from activities, helping them with homework, feeding them and then putting them to bed without wanting to cry from pure exhaustion is more than I can handle. After the holidays I will try a different job route, like an aid in the classroom or something. But NO MORE factory jobs. I still have varnish on my arms making me look like an abused wife...

We have had a good week with Tobey, I would like to think it is because he is with me. But, probably not. He is loving Christmas and every time he sees a tree or lights he sings a song and then claps for himself. How darling is that?

Edwin has been fun lately, I took him to get his haircut on Saturday. He hated going but now thinks he looks like Kevin off of Home Alone. Not really dude. But he is happy to brush his own hair every morning, so I will call him Kevin if he wants to take care of his own hair. Whatever it takes.

We got a real tree again this year, probably a huge mistake. Last year we are lucky the tree didn't go up in flames. It 9 feet tall and extremely wide and it still has ornaments from about 3 feet up, or about as high as the kitten can climb before getting yelled at. I know Christmas is in 20 days but I am just not feeling it much this year. Maybe it's because my husband wore shorts and flip flops outside? We will just blame it on the weather, like everything else is. The weather and Obama...no one else to blame for anything in the world. Haha. Just want to take a second to point out that I, Melissa Holstein blame Obama for nothing, I have not become a Republican overnight. Sorry Sarah.

Going over the last paragraph I just realized that I sounded like Linus from the Peanut's Christmas special, maybe I should watch it to put me in the holiday spirit.

I love Peanut's! So I think that is all for me....now I need to get things done like water the tree and become Martha Stewart. Talk to ya later!

The Husband Strikes Again, Dorks

Hello, husband here.   This week is the first week of Melissa's and my split shift work week.   She works the day shift, I work the evening shift.  It is also the first day back to school after Thanksgiving Break for the kids.   So, not counting the bunny, two dogs, and one annoying cat, I am here...ALONE!  
It's quiet...a bit too quiet.   And WONDERFUL!   I love the kids, but I haven't yelled at anyone to stop hitting their sister or to find their shoe or to stop licking something.   It's great!  
So, here I am, ghost blogging on my wife's account.   So, here now, are some random thoughts.

• Turkey is wonderful...once a year.   Sincerely.   We love turkey.   We love stuffing (only my wife's will do).  And we tolerate cranberry dressing.   Once a year.   That's it people!   Maybe I need to start deep frying them...
• I am taking bets now on how many hats and gloves I will need to buy this year.   Everyone else in the civilized world will say 'Seven kids?   That's seven hats; seven pairs of gloves!  Learn yourself some math, doofus!'   Whoa there!  Slow your roll, player.   My kids REGULARLY lose their hats and gloves.   That's why we are a fan of coats with hoods and pockets.  My daughter Emily got a hat from a crossing guard who loves my kids on Tuesday morning.   She had lost it by the end of the day.  I'm going with four of each right now...(side note, dollar tree sells hats and gloves for a buck.  FYI)
• Housework is for losers.   That being said, I lost.
• I just did a kickboxing cardio work out.   On a completely unrelated note, what does a heart attack/stroke feel like?
• When the Mayans were figuring up the date for the end of the world, did they figure in leap years and daylight savings time?   And if so, does that mean the world will end in Australia first?  And do people in Starke county have one more hour than us in Marshall and St. Joseph?  Does that really seem fair?
• I called my wife a dork.   Later on, she looked up the definition of the word dork.   She was not amused.

Well, that's all for now.   Let us make preparations for Festivus!

Turkey with the fam....

Today we celebrated Thanksgiving....because well, that is what today is. We filled ourselves, said the prayer and ate off off turkey plates. "Blue" as Tobey named him tasted wonderful, and everything besides the brusell sprouts (which took me an hour to individually take off the stalk and peel) was a hit. Those brusell sprouts were not even edible, huge waste of time. Going on...

We did not however get around to the pumpkin/squash hunt, nor did I do any crafts with the kids. Why? You my ask? Because I managed to catch whatever the kids had and instead of feeling like I could do this....

On the day of feasting. I felt and looked like this.....

Not fun, I felt like I was run over by a truck and I am pretty sure that I asked Eddie a few times to let me just simply die and go meet our Savior.

Thanksgiving in 2 days!!!! WHAT!?!?!?!

Hello blog world, I sit here in disbelief of how fast time has been going. We have had so much going on in our house and that calendar doesn't stop for nothing. Today, I am home with a sick Emily and Tobey Jude. Yesterday, Eddie was home with a sick Olivia and Melody....tomorrow, who knows.

One thing that has been keeping us so busy was Eddie and I have 2 new jobs. After almost 5 years of being with Steel Warehouse and working his way into management, Eddie's plant shut down. He was able to find work in Plymouth (thank you God) but, they are obviously not going to give him the same pay starting at that we need to support a family of 9. So, I went to work in a factory. Do I think I am supposed to be working at a factory with a bad back and 7 kids with demanding schedules? Nope. But you do whatever it takes to take care of your family. I am however, going to need to find a job done the line that won't KILL me!

So, as you may know I kinda have a thing for holiday's. And this Thanksgiving is no different. We are starting a new thing with the kids this year. Wal-Mart had bags of mini pumpkins and gourds for $ .02. You read that right 2 cents (btw, where in the world is the cents sign on the keyboard? I can't find it!) so I bought 5 bags and we are going to hide them around the house (Easter egg style) and then the kids will bring them to the table for the centerpiece and as they put in each one they are going to say what they are thankful for. I have a feeling that Edwin is going to throw one at me, but we are trying to make a memory here people!

So, if you are not one of the people on Facebook that heard about Miss Emily...she may be gifted. I opened the letter from school and I was totally expecting for it say that she needs to be tested for Autism, or that she didn't put socks on. Something along those lines, because to be honest that is really all we ever get. But no! They think that Emily may be gifted! I am in shock of this kid!

The rest of the kids are doing alright, except for Tobey. The little dude is honestly getting to be quite the handful to take care of. He is getting bigger and stronger. A dear friend gave us the name of a Dr in Indy so we are going to check him out. I am in hopes that he has the answers for Tobey.

Olivia and Edwin are going to bell ringers for the Salvation Army for a couple of Friday's this holiday season.  Now, I was all about Olivia doing it. She is very polite and charitable minded. I also don't worry about her saying insane things. Edwin however, I have no idea how this is going to go down. I can totally see him in his monotone voice saying things like " I know you have more than a dollar lady" or "If you don't give me money I will blow up your car" or he could start doing jumping jacks or Gangham style right there at the entrance of Kmart. I am relieved that I don't have to be there and if something does happen I can blame Eddie because this was NOT my idea.

Olivia, Edwin and Alison are also going to perform at the town's Christmas tree lighting and parade. I think that one will go really well as long as the weather is good.

So, I suppose I need to do something around the house, take care!

Sometimes it really does take a village...

I remember several years back when I heard Hillary Clinton taking about that very topic, I think she had a book or something about it....she may have even won a Grammy for it. And not to get too far off the subject, but if she did win said Grammy for it....how hard is it really to win a Grammy. I know that Justin Beiber has way too many..... Okay, back to my blog on Hillary Clinton....ahhh, villages raising children that's it!!!!!

I started working at a new job last Thursday...I had about one day to actually prepare to go to work at a full time job. Now don't get me wrong I am not complaining, I need the job. But getting seven kids prepared to take on new responsibilities, making bulletin board charts on bus times (for 5 schools, mind you) rescheduling Dr. appointments, therapies and then trying not to kill my children, it was a rough 24 hours.

The hardest thing however was to find a place that will watch the Tobey Jude, and man I got to be picky, the last after school program lost him twice, and I am a little leery of these places now. So let me try and put you  in my shoes. Tobey is not an easy child. Now he is the cutest little dude I have ever laid my eyes on. But the fact that he could be hurt and have no way to let me know, and then I have to trust a virtual stranger with this precious boy and all his Autistic beauty, is harder than I can ever put in words. And once you find this person in Plymouth Indiana (not easy) they have to be willing to take him on. They have to feel comfortable and have the capabilities of taking care of him They are going to have to be willing to change him, medicate him and keep him safe. Just keeping Tobey safe is such a huge job....he knows of no danger. And while taking care of Tobey they have to also take care of other kids , not easy. There are days that I have no idea how the rest of our kids made it through the day with no injuries, with the days that boy has.

Well, the day that I got the phone call with my new job....God was with us. Because not only did we find a place for Tobey, but Emily and Melody are going with him. And that miraculous place that I am entrusting 3 of my beautiful children? Lifeplex! Holy cow, this place is AWESOME! The 3 littlest of the Holstein's have gone for 3 days this week, and so far they have learned about healthy food choices, taken Karate lessons, ran track (they were very impressed with Tobey's running skills) and had swimming lessons! They also give them help with homework, and they even teach them manners! We have been blessed beyond words to have found a Christian run, and health conscious place to send the kids!

We also got amazing help from the schools, as far as bending over backwards to help us out with bus schedules changing...making sure the kids looked appropriate for the school day (Lena has been helping with mornings now) and offering any support we could need.

The Boys and Girls Club has also been an amazing place with helping us to get Edwin adjusted to schedule changes and of course being Olivia's and Ali's favorite hang out after school....and handling the homework for 2 exhausted parents.

I can not thank our village enough for all they are doing for our kids. Years ago, when Ed and I were closed off I could not imagine having this many people helping us to raise our brood. And now I can't imagine how we could ever have done this without support. The other day I went to Jefferson, and the social worker wanted to be sure that she hadn't offended me (Emily forgot her coat, and it was getting colder that day...she let her borrow one) I looked at her and told her I was thankful that she loved my child enough to do that....how could someone loving my kid offend me?

Ed and I don't have Grandparent's coming over to visit the grand kids or ever even babysit for that matter. They have their own lives, and that's fine. But what we have is the most amazing friends, teachers, caregivers and Church that have given us more advice, support and most importantly loved our family. And so if I was doing that thankful Facebook thing, it would go something like this.....

Day 1- I am thankful to my God and our Church for everything that I have...everything
Day 2- My Husband
Day 3- 7 of the most amazing people I have ever known
Day 4- Our jobs, things can be tough without them
Day 5- Our Village
Day 6- Our home
Day 7- Our Pets
Day 8- Autism...I know it sounds nuts, but I am. Except for the meltdowns...I am NOT thankful for those.
Day 9- Our medical team for the kids...yes it is a team now. Everyone from Pediatricians (3 of them) , therapists (5 of them), Psychologist, Psychiatrist, Cardiologist (he could be nicer...anyway), CVS pharmacy (Hi Tabatha!) the nurses at our Pediatricians and the office staff who has been amazing!
Day 10- I really should have split up days 9 and 10, that is a ton of people! So, let's say Holiday's for day 10! I love me some holidays!

Long blog today...whew!

Tantrums VS Meltdown

It's Melissa here.   I'm back.   I've composed myself and I believe I have done the proper amount of mourning for our dear friend, VIZIO.   Now, I want to tell a little story about last night.   It goes a little dark, but I promise there is a light at the end.
We have been tinkering with with the Monkey's (Tobey) medication, under a doctor's supervision of course.  For several months now he has been on an ever increasing does of Ritalin.   And, it is an amazing drug.   For the first time in EVER, the monkey watches TV (part of the reason the flat screen fiasco {sub-parenthetical--it now has a name} happened), talks a little, focuses and, yes, even has conversations.  
He will never give the emancipation proclamation, but his sentences are getting up to two and three words.   Occasionally, he will even say a complete sentence out of the blue.  Language is hard for the little dude.   Some autistics draw or use computers to explain their needs and wants, but the monkey boy cannot do that...yet.   So, right now is very frustrating for him.  
Now, couple this with 0% impulse control.   What is impulse control?  Have you ever thought what it would feel like to stick your finger into a light socket?   We all have, if even only briefly.   However, that little voice inside of us says,"you idiot".   Then we think better of it.  Tobey does not have that voice.   He is a very visceral person, meaning he reacts on a primal level.   If he thinks he needs to punch something, he will.   If he needs to watch Ni-Hao Kai Lin, he will.   He is on risperidone for it, but we still have to keep an eye on the little guy. 
So, now we have a little monkey dude who cannot express his frustration and what is making him upset couple with 0% impulse control.
Now, small children have this same problem.   This is what happens when you see a temper tantrum in a store.   The child is tired and does not feel their need are being met.   They have no impulse control and then BOOM, temper tantrum.
Meltdowns are different.   There is no stopping a meltdown.   You cannot control it, you can only contain it.  And during it, the person having it is often a danger to themselves, perhaps others.  This is why when you see a special needs person having a meltdown, the best thing to do is NOT look and try to walk away, unless of course the situation calls for help.   Then by all means, help.   But extra attention only escalates it.  And so does ignoring it.   In fact, most meltdowns are escalated internally by the person having it.  
Which brings me to the second difference between tantrums and meltdowns.   During a tantrum, the child (hopefully) still recognizes you as the person in charge and is aware, although uncaring, of the surroundings. 
During a meltdown, the person quite often "blacks out".   They don't recognize you.   They lose skills, though mostly it is temporary.   and, in extreme cases, they can seize (seizure).
This is what happened last night.   Mr. Monkey became agitated.   He then worked himself into a frenzy...right as Eddie was starting dinner.   It got to a point where we had to send the kids upstairs as they were loud and obnoxious, making the situation worse.  
At one point, Tobey forgot how to use a fork.  (we were trying to feed him before we put him to bed early).   And, he had a seizure.   Not a violent one, but he lost sense of the world for a few moments.   As parent, it is times like this that scare the living hell out of you.  
Eddie and I make jokes about the 'tism, and we make light out of these situations as best we can, because we feel that if we let it get to us, there will be no helping us.   And that is a dark place to be. 
Monkey is fine now.   The next day is always a little weird because you don't know what they have lost.   And it was not much.   So, bonus!
In future posts, I am going to try and delve deeper into this subject as Eddie and I are going to be researching and approaching different treatment methods for Monkey boy.
Hey!   Thanks for letting me vent!

A guest post by the husband

Hi all, Eddie here.   I thought I would write this next post as Melissa is still traumatized by the events of yesterday.  
Have you ever heard of a football team employing the "twelfth man"?   This refers to the crowd in a stadium cheering for the home team, booing the away team.  Many times it so loud and raucous that it affects the outcome of the game, thus...the twelfth man.
Melissa and I have something like that.   We call it "the third parent".   It is our TV.  And in this case, it is our 47" VIZIO flat screen TV.  
We bought it three years ago for over 900 dollars.   Now, let me just say, we don't just have 900 dollars.   It was a tax check purchase and we had been shopping around for one for about four months.   We did our research and wanted to get the most bang for our buck. 
The VIZIO is great, although it proved to be a bit of a pain when it comes to universal remotes.   We loved our Friday night movie nights, our Saturday morning cartoons, our weekday TODAY shows in the morning.  
Our TV warned us of impending bad weather.  It entertained us.  It educated us.   It babysat our kids.   .
We loved our TV.   The kids loved our TV.  In short, the TV was family.   However, all good things must come to an end. 
The kids and I love a cartoon network show called "The Regular Show".  It is irreverent and hilarious, and extremely quotable.   So naturally, we bought the DVD.
Yesterday, we played the DVD and there came a moment when it froze, momentarily.  Tobey became frustrated and slapped the TV.   We quickly admonished him and fixed the DVD player, problem solved.
Then, Melissa and I left our teenager, Lena, in charge as we went to the store to pick up dinner.   A short while later we returned home.   Lena came running out of the front door.  
"OMIGOD OMIGOD!!!"  she was yelling.   Instantly, we feared the worst.
 "Is the TV OK?" we asked.   (I'm just kidding, we asked about the kids.)
"It's Tobey...he did something..." she trailed off.  "He cracked the TV."  This is how I reacted. 
The DVD had frozen once again.   Lena had gone to the restroom.   In that few seconds, Tobey grabbed the broom and shoved it through the screen of our precious TV.   Now, if one of my kids ever becomes a mass murderer or worse, a politician, I know I will be able to support them.  I was able to keep my calm.   But, sometimes, especially with autism, life can feel like this.  Pay attention to the :47 second mark.
So now, we are a day removed.   We are using an old 27" Tube TV.   It's like we're Amish.  
And, I think we learned a lesson that day.   We really need to get cable.

Decisions, decisions

My last post was, admittedly, kind of a downer.   But, it expressed my real feelings and concerns I have for my children.  But, dear reader, I have been keeping a secret from some of you.   So now I must come clean.
My husbands department at work is being shut down.  All of the employees are being offered transfers to different departments.   Transfers to Chattanooga, Tennessee were thrown into the mix.   I asked Eddie to check into it.   If approved, Eddie would receive a moving package plus some living expenses.
Now, there are some thoughts that come to mind when I think of Tennessee, especially in the Chattanooga area:
Mountains.
Lack of snow.
Beautiful scenery.
No snow.
Barbecue.
Did I mention they only get about 2 inches of snow a year?
But, upon further investigation, we found out that there are some really good opportunities for Tobey as far as Autism schools are concerned.   Plus, in Georgia (which Chattanooga just borders to the north), the medicaid insurance covers ABA therapy.
We decided to make the move.   We were just waiting for Eddie's work to approve the transfer and let us know what the moving package would be. 
Unfortunately, as of this writing, we never did get an answer.  Not for lack of Eddie's trying to get the information.  
And then, Eddie was offered a job near our house.   And by near I mean a ten minute walk away.  And, the pay would be roughly the same amount he would get when he transferred, minus of course the excessive cost of gas we pay for Shaggy (our extremely ugly and fuel inefficient...vee-hickle...that's another blog for another day).
Well, we pressed Eddie's job again and again, but still, no information. 
And then, we went to Wal-Mart.
As we walked through the Christmas section, we realized how much stress we were under living in this Limbo, how much stress the kids were under, and how much we would miss our family.  
And, we would miss our Living Stones Family.
We decided that Eddie would accept the job in Plymouth and I would try to get a job, but we needed to stay in Plymouth.   In Indiana.   With the people who love not only us, but love our kids unconditionally. 
So that's the long and the short of it.   Mostly the long.  
But now, I have to figure out what i am going to do about the Jude-Monkey.  
And where the heck am I going to get some boiled peanuts?

A tale of 2 boys....

I haven't blogged much lately, probably because I knew that I needed to do this particular blog you are reading and it is not an easy one for me to write. I want to be honest without hurting feelings, and even though Eddie and I are an open book, sometimes things hurt to talk about....not saying that we are not open to talk about them, it just stings a little. Here I go....

Edwin and Tobey have a lot iin common, they are the only boys in a large group of girls, they both wear clothes 3 sizes smaller than they should for their age, they both have great hair and brown eyes that make the girls fall in love. They are both goofy and huge fans of chicken nuggets and mac and cheese, and like every other member of our home they both love the Beatles. And last but not least they are both on the spectrum....and that is where their similarities end.

I can pass off Edwin as "normal" if I bribe him, prepare him and  be careful where we are going. Edwin has freinds wherever he goes, and has not been turned away from any activities because he is Autistic. I have never been told that there is no hope for a therapy to work for him, or that things that I want to do to help him would be a waste of time. I have never been kicked out of a restaurant for his behavior, or felt that burn from people staring with him. At the school's field day I heard kids chanting his name when he did the tug of war, I get a real report card and he doesn't have to sit at a special table in the cafeteria. He has a chance to have his own life someday, a job to support himself...who knows? Maybe, a family of his own. There has never been a limit placed on him. I can honestly say that it is an honor to see how much Edwin has grown and changed with all the work and love put into him.

And now Tobey Jude, to be honest it is getting tougher seeing him get bigger, and he still is kinda stuck at this level. It is so hard being told time and time again that he can't do things. I can not change Tobey, no matter how much I have tried to "fix" his speech or stop him from doing all of his "quirks". I have this dream of changing the world, I want him  accepted. But I can't.

The other night I was watching Secret Millionaire, and they showed a day program for Autistic adults and I lost it. I don't want that for him, I don't want him to be that guy that you see and it makes you uncomfortable.  I want him to live an incredible life, but that is so hard when you are not given a chance. I don't want to just give Tobey a pill to help him with his problem...I want to FIX the problem! I want normal, I crave normal....but it is not going to happen. I would give anything for a note from his teacher saying that he was in trouble for mouthing off, instead of him needing pull-ups and telling me that he is not doing well with his new meds. The other night when I saw that show, it showed me his future and it made me sick to my stomach. Every parent wants to give their child the world, but sometimes it won't make any difference. But, you keep trucking on and looking up if hyperbaric chambers will make a difference, or you you-tube those inspirational videos of people overcoming their medical problems. You try and figure out what you can do to aid them with harnesses, medications, chewy tubes and you try your darnedest to ignore the staring and you put a smile  on your face and you keep trucking on.
Side story...We have perpetual food and water dishes for the dogs.   Tobey took the tank off the water dish, took it to the sink, filled it, and put it back on the dish.   I was so PROUD.   Maybe we can get him a chore, and maybe this will be the start of something normal!   I left the room to get my camera, and when I got back, Tobey was on all fours next to the cat drinking out of the water dish.   :P
Seriously, though, Tobey will never be normal.   He will never not be stared at.   He will never be on his own.
And, He will always be autistic.
Those last sentences tasted horrible coming out.   They have been stuck in my mind and my heart for a while now.  I keep avoiding saying or writing or thinking them, hoping that somehow, they would not be true.   But, they are.
And, I have to accept that.   I have to accept that Tobey is Tobey and the world is the world.  And, sometimes the world sucks.
I think that is why I am so passionate about disability ministry and kids with special needs.   Special needs kids and adults alike have to try SO MUCH harder than the rest of us.   And it is up to us to help them through.
And the problem is not getting any smaller.   In fact, it is getting exponentially larger.   Recent studies show that autism affects as many as 1 in 88 boys, 1 in 110 kids altogether.
Not to mention Down's Syndrome.   Multiple Sclerosis.  Emotional disability.  Birth Defects.
I want to be able to help all of these kids AND adults to live a great life!   A life rich in experience and joy.   I want all of them to know that Jesus LOVES them.   That is my passion.
I think that's why I get so upset with Tobey.   I see him struggle with daily things you and I take for granted.   Like talking.   Focusing.   Learning.   Reading.   I am sure it kills me more than him to see him struggle with these things.   I HATE seeing Edwin have to get his 21 day penicillin shot, all because he did not possess the proper verbiage to communicate that he wasn't feeling well.
Well, I have ranted and raved enough.      Until next time.  See you later!

Dr. B

     I have three homes.   My first home is the one I eat and sleep at.   It's in Plymouth.
My second home is my church in South Bend, Living Stones Church.  My friends and family are there...so is my heart.
     My third home, it seems, is the pediatricians office.   And, this past Saturday, a member of my third household went to see Jesus.
     Several years ago, we became disenfranchised with our special needs pediatrician in South Bend.   Each appointment was easily three or more hours, with only about 20 minutes of actual face to face doctor time and the rest being waiting room time.   Try sitting in a doctor's waiting room with a kid with ADHD so severe he literally slam his self into a wall because he just can't help it.   She also did not have a very good manner and would often suggest therapies and treatments that either did not work or were not feasible.   Once, she said she wanted us to take Tobey to a speech therapist who lived 2 hours over the Michigan border. 
     So, we began to look, and decided we would go out of network on my husbands insurance.   That is when we found Marshall County Pediatrics.   The first doctor we met was Dr. Graber, who soon moved.   We were handed off to Dr. Susan Bardwell.
     The first time Eddie met her, he noticed one peculiar thing about her:  she was orange.   Literally orange.  She explained it was from all of the carrot juice she drank.   She was a vegetarian. 
     Fast forward a year.   During that time, there was never a call that went unanswered nor a question that went unasked.   Dr. Bardwell had our kids on lock!
     Then, Edwin's feet were cramping to the point of being unbearable.   It was Dr. Bardwell who suspected Rheumatic Fever.   Edwin is thriving.
     It was Dr. Bardwell who put Tobey on Ritalin, thus calming him down AND giving him more language! 
     When you saw Dr. Bardwell at the farmer's market on Saturdays, she was always there with a friendly hello and how is Edwin?
     During the whole time we were being seen by Dr. B, she was battling cancer.  Bravely.  Courageously.   And while taking care of my kids.
     There were times I had the stupidest of questions about Tobey or Edwin or Melody, and she would always kindly answer, never letting on that she had had Chemo earlier that day.  
     She was an inspiration.   You can view her Obituary here.  I encourage you to read it.   She was an amazing woman, and she is my hero.

We love you Dr. B, We will miss you.   And, Thank you.

Is it fall yet?

Well, here it is, the beginning of school.   And I have yet to update all of you!  So here goes!

I spent the summer as a counselor at a day camp for at risk kids on the South Side of South Bend.   It was called RECESS, and it's aim was to fill the gap and prevent the summer slide.   Now anyone who knows me knows that this was WAY out of my comfort zone.  

But, it was amazing.   I became close with some other counselors (that's you, Asparagus) and I developed a close relationship with some really cool kids.   I know I will miss them!   So, I was glad to hear that my church, Living Stones, was starting an after school program for these kids.   This summer changed me and my life for the better.

I also started physical therapy for my back!   I haven't felt this great in years!  

Now, for the family.

We added a few new members.   We got a bunny, Easter, and also a dog, Max.   But none has made a bigger impact on us than Shaggy, the worlds biggest van.   If it was any bigger, it would be a house!   I'm not kidding, people!

Lena is in high school now, and will be taking driver's ed next year!   Holy Crap!  When did that happen?   When did that little cone-headed baby become a real live person?!

Alison is in Junior High.   She is doing well so far and is really developing her comic strip nicely.

Edwin has had one hell of a summer!  (sorry about the cursing, but there is NO other word!)  The good news is, his heart is almost completely healed.   He is running around and doing exercise because he does NOT have Rheumatoid arthritis.   And, he is quite the celebrity every where we go.   I don't think a single person in Plymouth doesn't know his name!

Olivia is in fourth grade and a little bit nervous.   But she is starting to ask some pretty big question about life and God.   Pretty Awesome!

Tobey Jude.   Well, we love a Tobey and he is momma's love.   But, we are, as yet, STILL unable to find him any type of extra-curricular program.   It is very frustrating.   I think the most frustrating thing is seeing how not normal he is becoming.   And also, seeing how that is starting to affect his life.   I don't think he cares personally, but as a mother, I am not sure where to go sometimes.

Emily is a goofball.   I would like to start out an update on her where I didn't say this.   But the fact is, she gets goofier and goofier with every passing day.   I have a feeling I am raising another Gallagher.  

Melody is also starting to become a kid!  That little lady has really come out of her shell.   She is loving kindergarten and loves getting homework even more! 

Eddie...is still clinically insane.  I love the big guy, but sometimes I wonder if he is firing on all cylinders sometimes.  

The kids are only in five different schools this year.   And all but 2 get the bus.  Also, three of them have MAC books to replace their standard text books!  

The Boys and Girls club gave the kids an amazing summer this year.   They were able to go bowling, fishing, knitting, play baseball, soccer, volleyball, and just have a great time.   Thank you Andrea and Bill!

Well, that's all.   I am sure the kids are getting into something!  

Talk at you later!

Happy 4th of July!!!!!!! And being very random....

Hello...long time no see! We have had so much going on!

I have had the honor of being a counselor at Recess at our Church. It is a free 8 week day program that helps fill the days for at risk grade school kids. The days have been hot, but I am having so much fun getting to know these great kids and also the other volunteers. The first week though to be honest I was not sure I was going to make it and was wondering what the heck I had got myself into. Now we are halfway through week 3 and I am missing the kids.

Emily and Olivia got to stay a week with our dear friends Aaron and Jenni, they had a blast we are so blessed to know them! They enjoyed everything from VBS to a mud pit...and of course Jenni's cooking that I have heard so much about!

Speaking of VBS...Tobey Jude with the help of Michelle (the VBS Director), Calvary Lutheran Church and his big sister Lena got to go to Vacation Bible School last week! He did great! I am so thankful that he was able to attend and have a great time!

Last Sunday after Church we went swimming at Lake Michigan...now if you remember last 4th of July we made the mistake of going to Silver Beach and had to deal with idiots who made fun of Tobey. So I was a little leery of going back! But with the help of some great friends we were able to go swimming again without needing therapy when we were done! The kids had a blast!!!!! We stayed 4 hours! We usually stay an hour because Ed and I are exhausted trying to keep 7 kids alive by ourselves! So thank you again! They mentioned camping in the Fall....I am excited!

I am now going to admit that I was one of the millions of women who saw Magic Mike...and now I will admit that I actually saw it twice in one weekend. Am I ashamed? Maybe a little....do I regret it? Nope! Had a blast and now trying to figure out how I can convince Eddie to work out and take dance lessons, any ideas?

We are changing up the 4th this year, The heat is insane, Tobey can't handle it, I need a day out of it and the crowds are tough on the boys. So we are enjoying a day of rented movies and ribs in the crock pot. We will probably watch the PBS special and I will make my infamous homemade potato salad. Totally not my style at all, I love holidays but a day off sounded great to everyone!

Eddie and I discussed in the Spring that we did not want the kids to lay around the house this summer. Edwin, Olivia and Alison are keeping busy with all the stuff at the Boys and Girls Club. They are going swimming, taking golf lessons, gardening, and tons of other things. Emily and Melody come to Recess with me and LOVING it!And Lena is watching Tobey 4 days a week and enjoying her Fridays off with her own spending money.

That is all for today! Talk to you soon!

Happy Father's Day Eddie!

As you are outside grilling and being all manly I wanted to jump on here and tell you thanks for a few things, so here I go....

• Thanks for asking me to marry you, and for not letting a single day go by without making me laugh to the point of tears.
• Thank you for Lena Elaine, Alison Rose, Edwin Jesse, Olivia Grace, Tobey Jude, Emily Frances and Melody Summer....for them I will never be able to thank you enough.
• Thank you for bringing our family to Christ.
• Thank you for fixing the car, the toilet, the sink..the list goes on and on.
• Thank you for putting up with all the pets I keep bringing into our home.
• Thank you for giving me back rubs every night even though you are tired.

But most of all thank you for showing me what a real man is. You have been faithful to me and our family for 17 years, despite the fact that we have had a lot thrown at us....you never turned away. Thank you for being the a great example to our daughters of what they need to look for in their own spouse, for showing them what kind of Dad that they are going to want for their kids. Thank you for being the most involved Dad I know, and you manage to do that with 7 kids.

Happy Father's Day, Eddie. I love you more than you will ever know......

June 22, 2008, a day that changed our lives...

A week from tomorrow I walked into a place that terrified me! There was this loud music, I met this guy with tattoos, I knew NO one and I was in utter fear.

Where was this place you may ask? It was my amazing Church! Living Stones! And because of this place I have not been the same. I am surrounded by people that love us for who we are, and they don't judge us for our past. The first sermon that I heard was about Betrayal, that moment when you are upset with the world...including God. I walked into that Church at the perfect time, because I felt that the whole world had betrayed Eddie and I. I remember when the service was over I was in shock, for one I have never heard a Pastor be so real and I remember feeling God come into my life and tell me that even though things were looking bad...I would overcome this with his help. I also remember that I had felt more at home there than I have ever felt anywhere...I still do.

When I walk into that Church now, I have friends and friends that are my family now. We have a true life now and we now know the meaning of what a family really is. Through that Church I have people who pray for my kids when we are at appointments, who drop off meals when life is knocking us down, people I can go to lunch with and be extremely goofy and go bead shopping ( I miss that, BTW), people who know what it is to walk in life of taking care of special needs children, people who give me advice on those parenting issues that I have no idea how to handle and I have a Pastor who lets me cry in his office when things are too much to handle. I am comfortable there...it is my home.

But next month, I am putting myself in that vulnerable position for a couple of weeks of walking into a new Church for the first time and I will have Mr. Tobey Jude in his Autistic awesomeness, complete with leash. And I am terrified of the stares and of being turned away. You see, I have a dream of doing Disability Ministries some day and in order for me to see how to do it I have to see how other Churches do it. And I will also get to have that experience of being the parent, scared to death and surrounded by strangers and trying to wrangle a kid being taken out of his element.

I want to find out how to make parents feel comfortable and reassured that their special little one will be in good hands. I want to study how the parishioners deal with seeing a kid like him and most importantly I want to see how they will love my Tobey Jude.

Eddie and I have gotten very comfortable in our routine of knowing what to expect where we go. I know not to take Tobey to Wal-Mart and Lord knows I know I will NEVER go to Silver Beach with the kids again. I know that Tobey does great in restaurants that have background noise and has a lot of things to look at. But this...I have no idea!

And then after 3 weeks of being the "new" person at three different Churches I will come back home again, and hopefully understand better what we need to do at my Church.

PS, Amy O! Don't go giving all the volunteers a vacation because the Holstein's aren't coming. Eddie will bring the rest of the crew...and without me there, Eddie may need his own trailbuddy. Just sayin'

Is this the same kid? And Thank you!!!

I have this amazing little guy in my house, he looks like my Tobey Jude, and he laughs like my Tobey Jude. But this kid is a cereal making, watching TV and talking (yes, talking) Tobey Jude! It is the funnest thing ever! Now, don't get me wrong we are not discussing Socrates over here..but I know what he wants to drink and what show he wants to see. To me that is a miracle! It is also Ritalin...but we are just going to go with miracle.

I have heard horror stories about Ritalin and when they said that we should try it, I was terrified. I didn't want another Zombie (get it LSC?) but his activity level was getting to be to much for us to handle. The great thing is, he is still Tobey...goofy, fun, studly. Just a calmer more focused Tobey. Thank you God and thank you Ritalin! Woo hoo!

I am not going to lie, this has been a couple of the most stressful months ever. We are still not sure what all is going on with Edwin, and because of so many important things going on with him at the same time (Autism, Rheumatic Fever, Arthritis, Heart issues, psychiatric problems) we are not able to even make it to every appointment. Despite my best efforts he has not to the eye Dr yet, even though I have made the appointment 4 times. It's not that it is not important, it 's just that they are sending us everywhere in Indiana to get all the other issues taken care of.

Besides the boys we have have 5 girls who have been patient but are getting a little fed up with being put on the back burner...and I don't blame them. I would be a little upset if I were them. So, this weekend I am going to make a pointed effort of not talking about Dr's and just have some fun with them (that will have to start on Saturday, we have 5 appointments on Friday...whoops).

We have had a lot of people asking us how we are handling everything that has been going on. I even had some one make a comment to me that they were surprised we are still Christians with everything God has done. My answer is, we could not have done this without God and our Church. I don't know how you could get through bad times without God and Faith. I think it would just crush you.... I can also tell you that I did more praying in that mental institution than I did last Sunday at Church! I think I prayed more than a Nun in that place, it worked we made it out alive! I used to think I would like to work in a place like that, I have changed my mind. That was emotionally draining, I was starting to wonder about my own mental health (right now you are saying, "She is just NOW wondering?).

We would also like to thank everyone for the prayers, meals, cards, gift cards and financial assistance that helped out more than you could ever know! We could not have gotten through this without you...and because of you, we have great faith that this will all be a distant memory while we are watching Edwin play sports again and rocking it out on the guitar! We love you all....

Jenny McCarthy should be tarred and feathered....

I am not a fan of Jenny McCarthy to say the least...now her cousin Melissa? That woman is AWESOME! But this blog is not about the Amazing Melissa, this is about Jenny.

When the boys were first diagnosed with the 'tism, I looked everywhere for info. At the time there was not many celebrities that had "come out" about having a child with Autism, she was one of the few. I bought her book, I looked at her websites, I read how she had "cured" her son and grasping for straws I prayed for the resources to "cure" mine.

But then I saw it, she blamed vaccines and I knew right then and there not to get my medical advice from Playmates. You see long before the boys were diagnosed I noticed that Edwin had some odd quirks and I did not want  to take a chance with Tobey developing those quirks and I refused to vaccinate him, in fact I grew to distrust anyone in the medical field. Well guess what? Even without being vaccinated Tobey Jude is Autistic!!!! Like really Autistic, non-verbal, high energy, seizure having Autistic!

I am now a huge fan of Dr's, in fact I take the kids Pediatrician's cupcakes (by the way, if you want you Dr to be your best friend treat them and the staff, it goes a long way). And my personal opinion of why we have kids with Autism is that Eddie and I were a horrible genetic match, and I think that there is also an environmental factor to the whole thing. Like I am not real trusting of some of the foods we are eating..pink slime anyone?

I am so sick of hearing the thousand theories of what caused it, I have three kids with it and I want to know what to do to help them. I know there is no cure, I just want them better. And thanks to the amazing Dr's that we have Tobey making HUGE strides this week alone! He has not only said "Hi Mommy, Hi Daddy" to Eddie and I but the boy watched an entire television show!!! He has never sat down for 5 minutes to watch TV before!

I wrote this huge blog the other day, and to be honest even though it was amazing (if I may say so) I will probably never publish it. It started out talking about how things are so unfair for kids like Tobey. Edwin and Alison are probably going to get to lead a somewhat normal life with help. Tobey however, will not. We are now past that time when things can turn around for him, all we can do now is make the best of it. To give him the best and most fulfilling life we can. To give him every opportunity in life we can, and if we get turned away to find out another way to do it.

On Monday I had to take Edwin to a Psychiatrist, it happened to be in a mental institution. It was eye opening, and I am positive that the people that were in there were not in there because their parents vaccinated them. It is Mental Illness! There is nothing simple about it, it is devastating. Mental illness is unfair, because it takes beautiful children and turns them into those adults that you see and you cross the road to get      away from.

So, if I had an opportunity to talk to Jenny McCarthy (after I asked her for advice on how she dealt with Jim Carrey so long...help a sister out here, Eddie is wearing me down!). I would first explain to her that taking off her clothes is not helping making people aware of Autism, it is only making us aware of implants. I would then ask her to get a medical degree before she starts publishing more books then Temple Grandin has. Last but not least, I would ask her for Melissa's phone number because I think I would totally love to go to lunch with her...love that woman!

Edwin, Easter "Twinkle Ears" Holstein and NOOOO, not my back!!!!

We have had a lot going on around here. So first I will tell you about the boy Edwin. We went to the cardiologist last Tuesday and he has 2 leaky valves, they are putting him on blood pressure meds to help his heart slow down so it can heal. And then on Friday we left at 5:30 (I know!) in the morning to go to Riley, so we could rule out Rheumatoid Arthritis. I now know that when a Dr. says they want to rule out something they actually mean that they are pretty sure he has it. They put him on steroids and as Edwin says "I am walking like a new man!". We go back in 2 months for the final word, but they are pretty sure he has it. However, we found out it is not the end of the world, he can go on to living a normal life that can even include sports and guitar lessons. And as soon as we get him straightened around with all of his issues and we spend some quality time with our other 6 kids, we will get him back in all of his activities.

And now onto our newest family member...we got the bunny!!!! We are in LOVE with this little thing! So far the dog and our obese cat seem to like the bunny. Our cat Butterscotch wants to kill it. So we have to put her in the kitchen when we give the bunny free reign. Let me tell you now, there is nothing cuter than seeing a bunny hop on our dog and race around the dining room. She is also super smart and well on her way to being potty trained!

And now the freaking back! We were on our way home from a wedding and Eddie hit this bump, and all I felt was pain. I immediately went to bed after taking every pill that I thought would help. On Sunday it took me nearly an hour to get to the point of walking, and then between Church and being a Team Mom for Challenger, I was near tears by Sunday night. So, Monday after the 6 got off to school I went to the ER. And those people medicated me to the point of stupor. I felt no pain, I did not know what day it was....I felt great! And then I started throwing up everywhere...the car, the yard, my poor friends Sarah's (sorry Sarah!). It was horrible! So today I am on fun meds, and feeling sore but better. So, on the first week in a month that Edwin does not have any appointments, I now will have them because I ruptured a disc...fun.


Note, I just found this blog and I drafted it instead of publishing it....whoops! Probably does a better job of explaining why the dude has been so busy!

Overwhelming...

I haven't blogged in a while, it is not that I haven't had something to say...sometimes we just have rough weeks and we have had several of those lately.

Edwin is doing better, the little dude has been through so much! I have started calling him Amazing instead of Edwin now, because he is. He complains a little about going to the Dr, but he goes. He cries when he gets shots and when they are seeing how far he can flex, but he puts up with them...and all I can do is hold his hand. I am so thankful for all the Dr's we have dealt with, ok maybe not all of them. His Cardiologist could be a little nicer, and we may just switch him over to one at Riley, they are great there!

My back going out happened at the wrong time, things still have to be done. So I take the fun pills, suck it up and get through the day.

Tomorrow is the kids last day of School, I can't believe the year is over. The Schools are so impressive here, and I can honestly say that I haven't had one day of worry about their safety and they have also not caused us any undue stress, which I appreciate soooo much. Considering that the kids were in 6 schools, and it seems like every school had 5,000 activities...we LOVED it and had a very enjoyable year!

Miss Emily is home sick today, poor baby! She has a temp and a dry cough but she will be in the pediatrician's office today. Our nephew had Strep and they were all at a cookout on Sunday. I though we had dodged a bullet when I called our poor Doc's on Labor Day worried about Edwin being exposed to it, and then she gets sick. I am taking no chances with Strep! I am praying that I am overreacting over a summer cold!

I think that is all I can do today with the sickie here! Have a great day!

An Edwin of a different color...

I am tired of writing about health issiues. So I thought I would write a funny blog about the funniest guy I know and that of course would be Eddie.

If you don't know Eddie he is this crazy energized little bunny on a caffeine high and with no filter of any kind. Yesterday while we are getting the kids ready for school, he was wearing a Batman mask and tried with all his might to sound like him while telling the kids to put their shoes on. (For the record when Eddie is home and "helps" it takes about twice as long.) After we finally succeeded at getting 4 of them out the door and I say a silent thank you to God that we got them out safely, Eddie loads up the kids in the car and then runs in the house like a 6 year old to show me this huge toad that he found in the yard! I scream like a child hoping that the poor thing doesn't get loose and give Icee something to chase. We finally make it in the car, and Eddie then cranks up Led Zeppelin or something as equally annoying at 7:30 and has the kids start doing some movement with their hand, and attempting to head bang...all I can think is I just fixed their hair. He then makes a comment about some guy on the road dressed oddly and of course the kids are repeating it. And that my friends is all within a half hour time span....I am tired, let me tell you.

Eddie writes skits for Church sometimes and he also leads Children's worship every now and then ...last week he even MC'd an event to help the junior high kids go to camp. Is this great that he does this? Yes...it also terrifies the heck out of me. Why? You may ask would your husband doing things to help at Church terrify you? Because they give the man a microphone! Remember he has NO filter! One of Eddie's favorite things to do is to see how far he can get with someone, concerning humor.

Eddie is always on, I can count on one hand the number of times that I have actually been in a situation with him not cracking jokes. I am not this huge LOL person, I think to him that means a challenge.  I can not even count how many times he has sent me a text at the wrong time that has nearly made me pee my pants...examples, meetings, IEP's, ...you get the idea.

Just recently, I filled about an application to work for our Church this summer for a day program for low income kids. One of the questions was Are you in any counseling? I simply put "Yes, I live with Ed Holstein".  That is all that needs said.

Now, on to the sappy part...you are welcome to skip if you would like. I can not imagine my life with any one else on this Earth, he is absolutely what I need in my life and that is not to take things too seriously. Because when serious stuff happens you need some one there to remind you that the world is not going to end, and that life is about living. I do think however life is NOT about bringing creepy toads in the house EVER again though.

So, on the Mother's Day weekend I would like to thank that insane man for choosing me to be his wife and the mother to his equally insane children. For getting down on one knee about 5 times a week to reenact the shoe scene from Cinderella with Melody, for getting ballet lessons from Emily (and looking like a girl...), for trying to show me in detail some crazy thing that Tobey did that I missed. I want to thank you for moving everything in your schedule to take Olivia to a dance, and being Edwin's coach, having the "talk" with Alison and last but not least...Lena being alive with her attitude, is testament to your love for these kids.

God knew the perfect guy to make for me....I love you.

Sometimes I wonder.....

The other night while I was getting my Tobey cuddle time, I asked Eddie what he thought Tobey would be like without the 'tism. I probably ask myself that a couple of times a week. We have come to the conclusion that he would probably say some crazy off the wall things and we would not get a word in edgewise. It used to make me super sad to think about what I may be missing out on, what he may be missing out on. But now, it still is a little sad....but getting easier.

It seems like the more I get involved with special needs the more I realize how that is the direction my life is supposed to go. When I was a kid, I went to Church with what they called at that time a mongoloid (thank God they have stopped with that name), and I remember being so curious about her, but being told that I should not talk to the family. I remember trying to get to know the girl that lived across from me that talked with her hands and seeing how my Grandmother who had polio run her own business, with no excuses ever. I high school I was irritated that there was no gym class for a girl in a wheelchair and spending my study hour hanging out and attempting to do some kind of sport with her (to be honest it was much better than study hall). And then in 2008 we were told that the boys had Autism. Crushed.

At the time I was angry with God, really angry. Do I think now that God gave the boys Autism? Of course not. But when you don't have a strong faith, sometimes you tend to blame God for everything. I do believe however, that God has a plan to do some awesome things with the hand we have been given. I have no idea what....but I am confident that he does.

So now, instead of wondering what Tobey would be like if he could communicate and how Edwin would be if well...he didn't want to kill us (insert awkward laugh here) I am going to wonder what amazing plan he has for them. Who knows Edwin may end up being the next Steve Jobs...and Tobey? Well, we all know that Tobey could easily be a male model or a professional runner.

What a difference a day can make...

More updates on the Edwin....

Yesterday we got a call from the Dr and we were told that Edwin most likely has Strep Arthritis, not the end of the world. He could be in pain for 6 months, and then everything would be back to "normal". And then today the Dr. called and we are now looking at Rheumatoid Arthritis or Rheumatic Fever on TOP of the Strep thing. Nice.

So, on Friday we have to take Edwin to Mishawaka and get an echo cardiogram (help me spell check!) and then next Tuesday he has to get that weird eye check done and then next Friday...you guessed it. We have to go to Riley. Crap. I thought we dodged a bullet, but we did not.

They are concerned about his heart, due to Strep. A couple of months ago 6 kids and Eddie came down with Strep. Edwin showed no symptoms, so we didn't really worry about it. Well, I guess his showed up in a different way and the antibodies (?) are attacking his joints and causing him pain. And then if Strep is left in the body it can mess with your heart...hence all the heart testing. I guess that one of his other levels came back high today and that is what makes them think that he has real arthritis not just strep arthritis. 

So, today we took the boy to get a shot and he is not talking to me still....isn't parenting fun?

Keep the little dude in your prayers...this may be a long road.

Yet another club....

I know, I know I may be the worst blogger on Earth. I thought for sure when I became one of those stay at home Mom's I would get better. I am here to admit I have failed you, I apologize.

So, here is the latest on Edwin. Last Thursday we took him to a Psychiatrist, and they believe that he is in need of services (ya think?), so he will be admitted as an out-patient and FINALLY we will get somewhere on the whole hearing voices problem. And then we went to his Pediatrician that afternoon because of the pain the kid is at night. The Dr, sent us over to the hospital for bloodwork, Xrays and an EKG. On Friday we got some of the results and we were told that one part of his heart is working a little harder and some of his levels were a little off. We were given 3 possibilities of things that could be wrong...Rheumatic Fever, Lupus and Arthritis and as crazy as this sounds I was hoping for the fever thing. Because out of the options that is the only one that is not Chronic even though it sounds a little 3rd world. And then yesterday we were told that he has Juvenile Arthritis, that is chronic...you never get rid of it.

The next step is we go to Riley in the very near future and get the "officail" diagnosis and start treatments so the little dude can be in a little less pain. We also have to stop him from plying baseball (he will be the assitant Coach) and change a few other things for him. He also has to have some weird eye exam that looks behind the eye and gives

As for what caused this I have no idea...in the back of my mind I worry that it may be from all the medications that he has been on with the 'tism. One thing that we keep being asked about is when we had strep a couple of months ago, and they are testing him for strep right now. So, they must see a link, but I have no idea. It seemed like Edwin started having a ton of problems start within 2 weeks. Everyting from hearing things, excessive mood problems and a ton of pain.

Just hold on....

I thought about calling this blog Chchchchanges, you know that stupid song by David Bowie. I am a fan of David...but after watching one particularly annoying episode of Seventh Heaven, I am ruined forever. And now I have wrote about it so many times, I can NOT get it out of my head. I will now switch to a Beatles song (much better).

We have had so much going on I have no idea where to really start. So, I will start with the Edwin. His pain is so bad and my heart just breaks for him. He has an appointment with a pediatrician next week (again) but they are going to try and fit him in tomorrow. He actually told me yesterday that he hated life because he is in so much pain, and he just cried. The pain meds I am giving him on;y help for about 2 hours....HATE this. He goes to the Psychiatrist next Wednesday, so hopefully we can get some help on the mental issues. And the Psychologist has got a great plan in place to help also, so I feel like we are on the right track as far as mentally.

And the Tobey Jude, he obviously did not get the memo about us being busy with Edwin...so he  also been a handful! They started him on ADHD meds 2 days ago and the boy has had some strange moments! He did however have an excellent OT today and had quite a few ladies checking him out today in his new shirt.

And on to other non-Autism news....I am one of those stay at home Mom's now! Bring on the soap operas and bon-bons!!!!! I really have no idea why they say I stay at home, because the kids now are deciding how many more things they can sign up for! Ok, now here is the shocker...I am not made to be a stay at home Mom, I have to be busy or else I will sit in a chair and feel sorry for myself. I am honored that we had a change in our finances that I am able to be home, and I have a husband that works very hard for our family. But the stress of the boys and then 5 girls who want my attention was getting to be too much. I do think that if the right job comes along and it is flexible I will probably be really close to losing my mind this fall.

One thing that I am going to do is start studying Disability Ministries. I found out that this amazing job existed last October and it seemed like a no-brainer. It is two things that I am passionate about...my faith and special needs! It is the perfect job! I was offered this position at a Church here in Plymouth when we first moved here.....but I LOVE my Church so I had to turn it down. So for the time being I am going to study it and start working on revamping how disabled people can be incorporated into the Church! I can't wait for the stuff to arrive!!!!!!!

So, here is the update on the other kids.....

Melody is still cute, she is getting to be quite the character and referred to one of her Preschool teachers as the one with the ta-ta's! I would like to point out that this what a Lutheran Preschool....

Emily has become very popular in her class. I knew she had a lot of friends, I did NOT know how many were boys. She had a birthday party to go to last Sunday and one of the boys would carry the ball up to her every time she bowled! And then on Tuesday she introduced me to another boy who asked if she would hold his hand...how cute. And then yesterday 2 little guys rode their bike in front of our house and they stopped to talk to her, and then made a comment that they were going to come by again! Really? Because Daddy is not happy about this.

Olivia is doing well with Volleyball and I think she has won every game so far! She has always been pretty good at sports, thank you Boys and Girls Club because they have made it so easy for her to be in Volleyball.

Alison, well...she's Alison. She pretty much just draws comics and keeps showing me how many pencils she finds. I think she may be a janitor when she grows up at this point. Of course that is until her comic book career takes off.

Lena has been livable this week....maybe I am just so tired from the boy's that I don't notice all the eye rolls and sighs of disgust (that is it I am sure). Any way, we are making plans to see the new Johnny Depp movie in a few weeks because we both find him so dreamy. On a side note, I am starting to wonder why that man doesn't age.....little creepy.

Alrighty then, I think that is it for the kids! The hubby is doing well, and he is getting ready to go to 3rd shift to take some of the appointments off of me....WooHoo! Our marriage therapist must see some improvement because we are now every other week. Holla!! Or...he has no idea how to fix Eddie and he just wants to make sure that I am not getting close to killing the man. Just kidding, honey....

My brain is fried so that is all for today! Holstein out!

Tales of Edwin....

I felt like I haven't done a really good update on Edwin...and I have 2 reasons. One is the dude has been keeping me busy with Dr appointments, therapy and shrinks. But to be honest in my mind, once it is typed out, it is real.

Edwin has been on Risperdole for a little while, in fact he was on it years ago but taken off because of our family history of Diabetes. We then tried out everything from Stratterra to Intuniv with no real results. We then made the decision to simply figure out how to "deal" with the issues. Edwin was only on Focalin (to help focus) and Clonidine (to help sleep) for quite a while...we made it work. Until, the scary stuff started happening with him (trying to kill me, trying to wreck the car) and we then decided we needed to get prescription help for him, to help him out but also to protect the rest of the family.

So, the dude went back on Resperdole but had horrible pain in his joints. I hoped that it was just a side effect and then off to try the next drug...which I was ok with, because it seemed like it wasn't helping too much. A pediatrician can only do so much so she switched him to yet another drug and we made the decision to have him see a Psychologist and a Psychiatrist. Because not only was he not getting better, but things were taking a weird turn as far as mental health.

Ok, now you have the back story...and then the Bee incident happened. Edwin has chores and one of his chores is to take out the trash. Because of his amazing Autistic mind, if you show him how to do something twice he will do it every time...whether he wants to or not. So, he was taking out the trash and I heard him in the mudroom screaming like someone was trying to take him. I immediately sent Melody upstairs and ran too him. And then I saw him crouched in the corner covering up with the trash bag and screaming and crying. I asked him what happened...he then said "That bee was talking to me in two voices!". Folks, that is NOT Autism, that is a whole new can of worms. I felt chills go down my back and I literally sat on the floor, covered my mouth and tried to figure out what the heck I am going to do.

So, we headed back to the Dr, because he is still in pain and now people are talking to him that are NOT there! As far as the Pediatrician goes...she doesn't think the pain is from medication. She now wants him tested for rheumatoid arthritis, after we see what the Psychiatrist checks out what he wants to do.

Today I looked at the boy and told him he is complicated...he told me "Thanks".

As far as Autism goes, I am comfortable with it...I have to be. But as I said before there is not a enough of a warning for it when puberty attacks. It is frustrating for everyone, but I can not imagine how it is for him. I can not imagine what that must be like to see things that are not real, and no way to know the difference. You feel like as their parent you should have the answers, it is not possible. And then when your own child scares you...that is the most conflicting feeling ever. And then it starts making you paranoid to go out, for fear of what can happen. It is hard enough to explain why Tobey is on a leash, explaining why Edwin is getting into a verbal fight with someone who is not there? That is what you call awkward.

A day in the life.....

I thought that I may take you on a little tour of my life as Mom to the Amazing 7! So here we go, and this may help give some insight as to why you have to repeat things to me while I give you a blank stare as you repeat yourself for the 100th time.

I awoke to the husband telling me it was 6:15...I don't want to believe him, I try to ignore him...no use! I then start waking the boys, Tobey after 5 minutes of cuddling and tickling wakes up in a great mood (he is the only one out of the 7) and then I make Edwin get up. He will then explain to me how he is allergic to everything under the sun and then inform me of how many days he has left of school, how many days until Saturday and that he will not eat breakfast at home. I get the Tobey dressed and then start medicating the boys. Next, while Edwin is yelling at everything I wake up Lena, she is not a morning person! She usually mumbles about not wanting to go to school and letting me know of every ache and pain she can think of. I then grab a Coke and inform Lena to get dressed (wondering why I still have to tell her). Next is Olivia (the worst of the group) and Emily and Melody. While they are getting dressed and finding their freaking shoes, I take the Edwin to the bus (Tobey has therapy on Thursday). After Edwin gets on the bus it is time for Lena to get to her bus and then Alison to start walking. And then I load up Olivia, Emily, Melody and the Tobey Jude in the "Payment" and take Olivia and Emily to school.

After I have dealt with the mass of traffic at Jefferson, and Emily holding up the traffic because she is the slowest child on Earth I take Tobey and Melody to the gas station and notice that not only has Tobey pooped but is now in need of clean pants AND socks...back home! Get home and change Tobey and then off to therapy. AS soon as I get to the hospital I notice that smell again and then change a 7 year old kid in the car, put on his harness and finally get to therapy! Tobey goes to OT and Melody goes to ST. I head down to the cafeteria for Coke number 2.

After therapy I drop off Tobey at his School and he is crying and I feel like crap, because come to find out he cries every time I leave him there, and then off to Edwin's School to take him to a Dr. appointment. At the appointment we decided to change his meds (Lord, help me) because of some crazy side effects and discuss the Psychologist appointment that he had the day before. We also decide that he needs both a Psychiatrist and a Psychologist...more appointments, yippee!

Then back home to feed the kids, grab a Coke and head to Alicks Home Medical where Edwin and Melody want top try out every single lift chair! After loading 80 pounds of stuff into my car that has no cargo...it is time to pick up Emily and Olivia. It was then I noticed that Edwin does not have a badge or his glasses to the Boys and Girls Club. Back home!! Then I finally get to the School and picked up the girls! I break up 2 fights (Edwin and Melody) and make the mad dash to drop off Edwin and Olivia at the club before Tobey's bus gets to our house! Made it just in time, got the Tobey and helped the kids with homework.

Next? Do some housework and get Melody ready for Kindergarten Round Up. I miraculously find all the paperwork, get her registered, sit through a meeting and fill out a bunch of forms.

Then it is time to pick up the kids from the Club, head home and make dinner. Eddie gets home in time to help and now it is 10 pm and I don't think I accomplished a single thing I wanted to do at home!

There is always tomorrow!

Edwin and the ladies.....

Edwin has become quite the ladies man....today I picked him up from the Boys and Girls Club and the volunteer receptionist (an adorable 17 year old blonde) proudly showed me a ring on her finger that she got from Edwin! The boy had used his Easter money to buy a gift for a cute blonde! He is also loved by the Director of the club who wants to mentor him this summer, he has made quite the impression!

The other day Edwin got off the bus and his Driver (who loves him also) told me to ask him about Gwen. So as he was eating his snack I asked him and he immediately got this huge smile on his face. Come to find out Gwen had kicked her aid in the face and Edwin thought this was the funniest thing he has ever seen! Now if you have never talked to Edwin he speaks in a monotone voice with almost "forced" emotion. But when it came to telling me about Gwen, this boy cracked up! I am talking tears coming down the face, slapping his hand on the counter while almost hyperventilating. He e went into extreme detail telling about how the Driver had to call the Mom, the aide's glasses falling off and then showing me the looks on every ones faces! Now, I feel bad about the aid...I really do! But seeing how Edwin told the story I probably made him tell it to me 7 or 8 times! And every time the beginning line was "Gwen, she is a nasty girl....she kicked her aid in the face!"

Edwin is such a tough kid to figure out...we go from him being the smartest (not an exaggeration) kid I know to being this holy terror that I don't recognize. Today he was giving me hugs at 2:30 and then at 2:50 he smacked me in the head as I was driving....the boy is a mystery. If I could just figure him out I would be a billionaire!

Happy Easter....

I am currently full from Easter Dinner and also wounded from Easter Dinner....how? Well let me tell you, usually for Easter I cheat and buy those hams that are spiraled and include that wonderful glaze that all you have to do is mix with water. Well this year I bought a ham (huge one) that did not include that handy little extra...so that left it up to me to make my own. I mixed honey, butter and brown sugar with some spices and made a delicious glaze....which became hard as a rock before I could glaze the ham. So I heated it back up and some landed on my fingers, and I had to leave the rest of the cooking and serving to my dear hubby. While I literally was sick to my stomach from the pain. I did manage to eat dinner with one hand, Eddie had to open the Coke though.

We had a nice Easter, I didn't coordinate the kids, and it honestly drove me nuts. I let the kids wear whatever they wanted and we looked like a freaking circus....I didn't like it one bit. Edwin had on a penguin shirt, Emily wore her boots with a dress, next year back to coordinating because it just didn't feel right...weird.

We had both sides of our families over, which is very rare. The kids had their Easter Egg hunt and then they made a bunny craft. The highlight was the confetti eggs that Eddie busted over the kids heads! That was so fun, and may I add OUTSIDE!!!

Church was awesome as usual, we are doing this Zombie theme...and guess who the Zombie is? It's Eddie! I couldn't say anything until today, but that was so much fun to tape and I got the honor of turning Eddie into a Zombie! I will have to see if I can post it on here.... There is nothing in the world like worshipping with your chosen family!

And now onto deep moments with Melissa...... This is probably not going to be as eloquent as our Pastor would say, or as memorable as the Easter Charlie Brown special, but here I go. I am amazed what our God has done. When I see one of my kids get hurt, like a skinned knee or even a scratch it kills me. I want to take their pain for them, my heart feels heavy and my breathing gets shorter ( I probably need to fill that prescription for anxiety drugs) but I can NOT imagine what it would be like to see my Son suffer, and I would be too selfish to let him suffer for anyone else. But God, did that for us so that we can live forever with Him and have an amazing life now. In 2008, I was one of the Walking Dead and now? Whoa, what a ride and for that God I thank you...... Happy Easter, friends.