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.

Buiding 429, Aaron and Jenni and the invisible disability.....

Hello all, I am beyond tired but I am writing a blog....I apologize now for all the grammatical arrors that I have and will hear about from Eddie.

So, Mr. Edwin turned 11 last week. and so what do you do to celebrate an Autistic kids birthday .... put him with 15,000 people? That is exactly what you do when Building 429 is involved!!!! First off I want to say that there is an amazing feeling when you are worshipping with 15,000 people...but being honest the joy of seeing that boy watch his favorite band perform and meeting them afterwards was the highest of highs! I have never seen him happier and the chances of Building 429 ever seeing this (even though if I keep typing out the name over and over....they might!) and knowing what that meant to him, there are no words to thank them! But I will try, Thank you for meeting with my son and signing his shirt, wishing him Happy Birthday and possibly giving him the best day of his life! The concert (with Building 429) had 10 bands performing and the energy was insane! The ending band was named Skillet, and I guess that they are well liked by the young folk. It was during their performance that I realized that I am getting old. I was not willing to bounce like they asked us (because I needed to walk the next day), I could not understand a word that they were screaming and in hopes that they would put the lyrics on the screen (Building 429 did....just sayin'). And then I looked down and realized that I attached my mini purse to my jeans....I am one step from the fanny pack and the pill containers! I finally admitted defeat and sat down and tried to look motherly by protecting the little kids ears (we took all 7)....but their hearing has probably been damaged already. My only complaint was....sounding old here. But I thought this thing would let out by 10, at the latest! 11:45 people! We then had a 3 hour drive home...next year we will get a room or something. And we will go next year if Building 429 is performing ( I am totally googling that after this)!

The next night we had dinner with 2 of our favorite people Aaron and Jenni! I have told you about them before...but quick recap, we met them at the lowest point of our lives, they are amazing, and they don't own a TV!!!! What?!?!?!?! I know, but when you are with them you don't even notice except that I kept thinking a flat screen would look amazing above their fireplace. When we arrived (fashionably late) they had set the table beautifully for Easter (like flowers strewn on it and everything matched!) we had dinner (with no tv) and then Jenni went a little crazy making desserts....it was almost like a dessert experience. After dinner Jenni read the kids a book and then the kids had an Easter Egg hunt. And then Aaron pulled out his guitar and sang to the kids...it was so cool. But then fear took over my body when Eddie started ad libbing music while Aaron played and I was terrified about his lack of filter. He did well. One thing I love about Aaron and Jenni is you would never guess we are friends (they are Mennonite and we still look so South Bend) but we worship the same guy and we love them and that is all we need.

So as you may know tomorrow is National Autism Awareness Day. Even though by this time I would think most people know that Autism exists (haha) but, now I will stand on my soapbox (sounding old again). The thing about Autism that drives me nuts is how you don't really see Autism. Like lets say that you see a guy in wheelchair with one leg, you know that he has had some kind of accident or whatever and not stare at his behaviors (I would hope not). But when people see Tobey (if they don't know him) they immediately take this picture of him. First off they are going to think he is studly and has great hair, because he is a handsome little guy. The next thing you will notice is that he has a harness on and then you will think to your self that studly kid is to old for a harness what is that Mother doing wrong? Then you will notice Tobey doing some odd things with his hands and letting out some screams....and it is then you have realized that that adorable little boy has something "wrong" with him.... And you will do one of three things...you could turn away and for get you ever saw him, you could stare at him making everyone uncomfortable and ignoring the fact that he is aware of you staring him down, or you could do the 3rd thing (which hardly ever happens) and talk to him like the boy he is!

Mental illness is not the most popular of disabilities (as far as people recognizing and truly understanding it), but it is the most popular as far as effecting way to many kids and families, the newest statistics are mind boggling and it IS an epidemic! We are soon going to have a generation of children that may always be children in their mind, and that should worry us....no one is prepared for what is going to happen to these kids. I feel at times we are losing some great minds to this illness and I know at times I do feel sorry for myself because I have "lost" my only boys to this....Edwin is the 4th kid in Eddie's family to have his name, and it has probably stopped now. And Tobey and Edwin getting their Drivers Licence is "lost", Daughter-in-laws are "lost", even though Lord help the woman they would touch Tobey. I keep hearing all these people on TV giving their theories on things to do to help prevent Autism, or arguing on how it started. I don't really care how it started (even though I have my theories) but I do care about how to "fix" it, while knowing in my heart it can't be. And now I will step down....