Feeling Embarrassed...

I tried to look up some advice on this topic, I had no luck. It is not easy to type out that you are sometimes embarrassed of your child.

Last week, we went to a community dinner and as the kids sat down to hear a holiday story from the Pastor, I debated on taking Tobey over there. He was being really pretty good, and so against Eddie's "no" nod,  I took him to story time. I picked a chair in the back, and I immediately ran my hand up and down Tobey's back which helps him out. I tried to make it look like he was interested in the story, but his eyes just  glazed over. Than he started making these weird sounds. I immediately started tapping his hand which works about 75% of the time. This time however we were in the other 25%. I accepted defeat, and bent down to whisper to the closest kid to me which was Emily to let her know that I was taking Tobey back to the table and I saw it. She was embarrassed of her brother and my heart broke. Here she was being good, patiently listening to the story, answering all the questions with your standard "Jesus is the reason for Christmas.". And all I could think of is how upset I was that she was embarrassed. Note that I said that I was upset, not Tobey...he could care less.

I know that being a sibling to a special needs kid has got to be frustrating, but I have never been in those shoes. But when we say prayer at dinner every night the other 6 are required to sit, eyes closed and head down while Tobey is generally running around the house with no pants on yelling "vacuum!". We have never gone to a movie theatre as a family.  Sit down restaurants are hard....to be honest everything is hard. I only made it through about 10 minutes of the sermon this week before Tobey had had enough, I then sat in a room with him working on colors for the rest of the service. If we are invited to something, the first thing we think is "Can Tobey handle it?" and that determines if we will even attempt it. When we get to the day of the event, if Tobey is having a rough day we may have to call it off all together.

I went to a marriage counselor once who who told me that if the kids didn't resent Ed, Tobey and I yet that they will "mark his words". But, he never told me what to do about it....maybe because I got so frustrated I decided to start phasing him out :)

I knew I needed to talk with Eddie about what to do about Emily, and he said something profound (shock with Eddie, I know) he said that there are times that he is embarrassed of Tobey. At first I was a little pissed. How could you say that about my precious boy? And then I realized that deep down I get embarrassed  too. Walking down the aisle of Church is embarrassing, having people stare is embarrassing, Tobey Jude discovering how much he LOVES his junk, no matter where we are, is well....disturbing and embarrassing.

So, I talked to Emily about the situation. And she feels like she has been cheated. Cheated because we don't do things like other families and cheated because Tobey is not the Big Brother that she wants. She wishes that she could talk with him, she wishes that we could go places besides therapy and appointments and I get it. So, I am not quite sure how to fix this one, they don't have Grandparents that are going to jump in and do that stuff with them, or watch Tobey so we can. And at the end of the day there we are so exhausted from the Tobey Jude that all we can do is put a band-aid on the problem. So I pulled out another band-aid and I took her and Melody out to a cupcake shop and Eddie and I had some one on one time with them. the band-aid worked but I don't know for how long....there is no fixing it, there is no cure.

I mean, long term, how do I prevent my other awesome kids from resenting the one who takes the majority of the their parents' time?   I know some people will and have said "oh they understand" or "Don't worry, they will."   But will they?  really?   I'm not looking for some general "with God's help" answer.   I know that I have God in our corner.   And, in many ways. He has already provided.   But there are times when I feel that I am phoning it in with my kids because i am either dealing with a special needs situation at home, or am quite frankly too tired.  

My husband made a comment on a post about poverty that said something to the effect of "poverty forces you to physically carry a heavy burden...all the time".   So does special needs.   There is NEVER a time i do not worry about my son.   There is never a time when I am not trying to figure out how I can best adapt the situation for him.   And, sometimes, I have to do it at the cost of the other six.  

Now, i am not looking for a pity party.   But I am curious to all of the other special needs/normy parents...do you have some REAL advice.  I know we will get through because, in all honesty, we have to.   But, it never hurts to have a few tricks up your sleeve.  

Melissa's Guide To Facebook Etiquette....

After we moved we didn't have internet for a while. Eddie has a smartphone so we could get most of our interneting (is that a word?) done, I could stalk the crazies and we could look up phone numbers without the bother of knowing the alphabet and trying to use that stupid phone book.

Now that we are back online there are a few things that are driving me crazy, and so now I will give you my ideas on how not look like a jerk or idiot on Facebook.

1. You do not need to post about your dinner every night on Facebook. I am glad that you are eating dinner in this day and age, but there has got to be something bigger and better in your life that telling your 600 Facebook friends that you are eating meatloaf. Now, there is a loophole to this...a freind of mine the other day made Sushi, and that is impressive! So unless it's Sushi or some other monumental dinner (Thanksgiving, date night or your kids are covered in spaghetti) I am good.
2. Pertaining to numeral uno....I don't need to see a thousand recipes of things I don't have the energy to cook. If I am feeding my kids mac and cheese and I see a recipe for a lobster bisque, it makes me feel like crap. 
3. Keep the Drama down! I mean really? I know more about peoples relationships than I need to. There are some "friends" on Facebook that I hardly know in real life and because of their postings I know the most intimate details of their life. For one, that causes me to stalk you and it takes up my time, for two...somethings need to be kept in the home.
4. Stop posting thousands of memes! My gosh people! Unless it is important to you or makes you LOL or ROTFL you don't need to post it. I think 2 a day is sufficient, 3 if it has Charlie Brown. 
5. So, this one may make you hate me but it has to said. Not everything is life or death...unless it is. As a parent to special needs children it can get really old. If your kid has a cold, I am sorry but there are kids that have Cancer and the parents would give anything to the days of just dealing with colds. There are people I know that have dealt with infertility for years and I can only imagine the pain that it causes them to see parents complain about the stupidest things, like kids crying or being....wait for it....KIDS! You have a kid! It is not easy to raise children..I know that, but no one ever said it would be.
6. If you are really, I mean truly having the absolutely worst day ever than by all means post it and ask for prayers...if it is the worst day ever because you have a hangnail and you are stuck behind some slow drivers..... Well then let's get a grip and move on with life.
7. Okay, now we are getting a little personal here. I may have to block your butt if I need to worry that my husband see's your boobs, butt or other body part that should be covered up. Some things are better left to the imagination. Let's leave that there.
8. Be real. I am in shock at how some people are online and then nothing like that in real life. For example my Husband is sometimes inappropriate on Facebook and in real life he is the same way. You see what you get.... In that vein, I am no longer censoring my husbands stuff, because I have a job now :)
9. If I am posting a picture of Tobey Jude and he is not looking a little drugged out...I expect at least 100 likes and upwards of ten comments on how cute he is. Okay this one is not a real issue but man, it is so hard to get a good pic of that boy. I blame it on his Ritalin and excessive studliness.

So there you have it. Melissa's list on Facebook etiquette, and now I am am off to post some Autism awareness stuff and maybe a Charlie Brown pic :)

My Relationship With God....

Eddie is never serious except when it comes to stewardship. Eddie takes the role of overseeing our faith very seriously.No matter how tired he is he will try his best to answerr the kids questions about Jesus, he leads the prayer at every family meal and he has just this crazy passion for God. 

When my Dad died and I was (well, still) having all these emotions about him Eddie kept asking me how my relationship with God was going. I would just give him the generic answer of "It's fine" and even though he was not satisfied he would move on and not pressure me too much. Well, he kept pushing and I finally told him how I really felt....

How in the world was I supposed to keep developing my relationship with God when I couldn't seem to keep my head above water? I was having a hard time keeping relationships going with the people who were in front of my face...like Eddie and the 7 children that keep wanting dinner every single night? Too be honest I was failing at even being a good wife ( the brunt of my anger went to poor Eddie) and you want to know how I am doing with God? I didn't know what day of the week it was. I had lost my Dad, my job and moved in a 3 day period. 

Now, don't get me wrong I am NOT angry with God. I personally don't understand why people blame God for everything going wrong. I have heard God being blamed for everything from lost keys to miscarriages. For my Dad's death I blame...well, my Dad. He was the one who made the decisions that caused his life to end. He thought of only himself and threw caution to the wind about how everything should be handled. I blame his immaturity and his thought that he was invincible....guess what? He was not invincible.

Now with that being said, when I get to heaven I have some questions for the big Guy. But the one that I will ask for first is " Why is Tobey Jude the way he is?". I have known people who did drugs during pregnancies and their kids are "normal". That is one fact that has never sat well with me. I have even talked to people about that particular question and I get those responses from people like "He knew you were going to be a strong woman and knew you can handle it" or "He only gives those children to the special parents". Heck, there are even poems about that. But with how well meaning those comments are, and I know they really don't know what to say...those responses are honestly a bunch of malarkey (old word, look it up). But notice that I didn't blame God, just would like an answer.

**DISCLAIMER**

Just want to make sure that blog world understands I am not angry that Tobey Jude is the way he is. I do feel blessed every day that I get to be that little vacuum -loving kids Mom. 

So here dear husband is your complete answer....My journey to God is getting there. There is a reason it is called a journey. Because even though I wasn't moving ahead I had to sit and take break, like a rest stop. (Let's see how long I can continue this analogy). I didn't backtrack or even take a wrong turn (still going with analogy) but I needed to regroup or and fill up my tank (okay I am stretching it here). And I am back on the path and getting back to where I needed to be headed (better now). Thank God, that I have you and our Church as my GPS and they saw that I was stranded on the journey (that was pretty good, and deep).

Not sure how to do this one.....

So, dear friends it has been a while. We have experienced sooo many changes, some good and some heartbreaking. Besides the kids switching schools, Eddie and I getting new jobs, moving to the country....the one that sticks in my mind is that my Dad died. That is still hard to type, he died on July 29th and it is not real. I have been through so much in my lifetime, and I don't get knocked down easy. But this one knocked me down, and it is still hard getting back up. I feel like that lady on the Medic Alert commercial that is laying on the floor claiming that she's fallen and she can't get up.

Ed and I kinda laugh at the commercial (I know that is so wrong of us) but the first thing we think is she doesn't look like she is even hurt really. She is not that old, she is on carpet, I don't see what tripped her and last but not least why in the world is the cameraman not helping the woman up?

In my case of not getting up there are moments it just seems impossible, like really wrong to get back up. Maybe it's because I am scared I am falling again....

I did not have the Father / Daughter relationship that my husband shares with my five girls. I had a relationship of fear and being totally controlled. In our family there was no traditions, or fun dance parties before bed. There was no laughter or family dinners. I think that is why that stuff is so important to me now. I want the kids childhood to be happier than mine.

With Dad dying there has been a lot of soul searching. But no matter how much I think about it, pray about it, talk about it...I can't get back up again.

I am not sure why...Is it because he is the last one? I now have no parents or grandparents. Is it because I miss something I didn't even have? A relationship that could have been so much better if he was not such a closed off person. Is it because, I was with him when he died after three days of waiting for him to pass and making decisions that no human should EVER have to make? Or maybe it's because I am having memories that I have blocked out for so long coming back at me when I am so vulnerable?

One thing I know for sure, is I am angry. I am angry at a dead man, and he doesn't care about that now. He has moved on and I am stuck here feeling all of these stupid emotions, that I just want to leave. I want to block them at and not think about them before I go to sleep, and wake up to the same thoughts. I want the days back when I immediately thought to check on Tobey Jude and smile when I think about the vacuum that he will inevitably have in bed with him. But no. I  lay there and think about the horrible things my Dad did, the horrible things he said. The fact that he called off my wedding, or said terrible things about Tobey...the list goes on and on. Then I feel guilty, because he was my father and that is so wrong to feel that way about him and that is so wrong of me. And then I see flashbacks of him when he was in the hospital bed and seeing him scared for the first time in my life, or the moment when he realized he was blind and he was trying to see the Dr. helping him, or the moment that he was somewhat lucid before he passed and I feel like the most evil person on Earth for being angry.

So, that is where I am at right now...just stuck. The crazy thing about being stuck is the world keeps moving on regardless. The kids still want dinner ( needy little humans!) , holidays still happen, homework still needs to be turned in and those needy little people need help with it. And you learn to just go through the motions but not really connected. Does that even make sense? I am so ready to connect again, I am so ready to have that uncontrolled laughter that you end up crying and your nose is running and it's impossible to catch your breath so you can breathe? I so want that. Who knows, maybe writing this blog can help get rid of those bad feelings. I hope so.

See you soon....

So, I am at least trying here, people!

I start more blogs with "I am the worst blogger ever, lately!" and I am. I am working full time (sometimes more) and attempting to rear 7 kids and keep the hubby happy! Also School needs to start, my kids are going insane!

So let's see here, what has been happening? Mr. Tobey Jude had his dental surgery and it went great! He is now pain free and looks as handsome as ever. He answered his first question, which was about the best moment in my life. He has been handling crowds better, and doing very well with his new meds.

Melody turned 6. I don't know where the time goes? How do I not have any "little" kids anymore?She got a princess bike and is about the happiest kid ever. Emily is enjoying the new bike too....it is very handy having a sister the same size as you!

Emily has enjoyed the summer, and I think we have watched just about every episode of Golden Girls that has ever been made together. She has also enjoyed learning how to make new foods and has developed an obsession worth devilled eggs.

Olivia has really grown up over the summer, Alison has a best friend, Lena went to Church Camp and had a great time and Edwin has a thing for drink helmets. You are pretty much caught up kids wise....onto other things!

We went to the drive in the other night, I had these visions of how it would be. I don't know why I keep thinking Norman Rockwell with my life, when we are not like that in any way. Going on, we packed up healthy foods, brought blankets and even glow necklaces and footballs. We planned well for once. However my dreams of all the kids laying on the blankets getting along, munching on junk food was quickly taken from me when we had to wait for an eternity to get in, Tobey decided that shorts were not necessary and that it was his personal mission to play with every dome light in our SUV (there is 6 of those bad boys in the Expedition!) and the worst thing imaginable...he honked the horn! Proper Drive In etiquette is to not honk the horn while people are watching a movie and 6 of your siblings are laying in front of the vehicle. We had numerous fights and it seemed like we picked the 2 longest movies in history. But the kids had fun, so I guess it was worth it! I however think I got even more gray hair and colored my hair the next morning.

We stayed at home for the 4th this year, after the Silver Beach incident we have not gone anywhere for fireworks on the actual 4th...I know that sounds silly. But the kids will get to see them when we take them to Lakefest this month. We did enjoy a cookout and letting off our own. We did realize however that sparklers are the stupidest thing that you could give a kid. We got these huge ones from Crazy Joe's (why are the fireworks people always crazy?) and we gave them to the kids, I then proceeded to have a heart attack when they got near each other, the blanket, the steps. All I could see was an ER trip on the horizon. I remember going out and lighting fireworks when I was a kid, with no supervision. Now? All I could think was I have handed my kids fire and told them to have fun. Seems crazy....maybe that is why the fireworks guys are always crazy? Deep thoughts.

So, I guess that is all....I will try and get better at this again, it 's been fun!

Miss Emily's Birthday and tons of other updates!

So Miss Emily is going to turn on 7 on Friday! I am in shock that this precious girl is going to be 7. I have said time and time again how I am not really sure how we were so blessed to get a kid like her. Her brain is amazing, like she is super, SUPER smart! Her personality is incredible and can be as goofy as they come, yet caring and an insane sense of humor. Her favorite thing to do at night is to lay on the love seat and watch Golden Girls with me and shake her head at the dumb things that Rose says. She has an incredible love for Jesus and her faith is strong. She has NEVER complained about missing things because of her brothers and doesn't bat an eye about having to help out bringing Tobey Jude to the table for dinner...even though that is her big brother. She loves to cook, and is fantastic at making deviled eggs and cookies. She is as beautiful on the inside as she is on the outside....which means she is stunning.

<--Emily at her Spring Concert



Quick story on the heart of Emily... We got some glass glasses (bad idea for our house) and Tobey Jude sneeked a few upstairs during Edwin's meltdown we were dealing with. Tobey threw them at the wall and proceeded to run through the glass. Emily immediately reacted with no thought of her self and ran through glass to pull him out. She brought him downstairs and told me that he was hurt. I then saw her feet and she was cut too. I placed them both on the couch and Emily looked at me and said "Take care of him first Mom." What kid does that? What kid puts her big brother first? She amazes me in so many ways.


<--Emily at the bowling alley


Tonight we are having her little birthday party. I wanted to do it Friday but we have appointments (of course) and she has the fun fair at her school. We are going to try and just take the three youngest girls because Tobey and Edwin last year was a problem!




<--Emily at her happiest...IT'S A MAJOR AWARD!

Lena has been good, she is very excited about going to camp in June. She has worked super hard at school this year and the break will be awesome for her. She even managed to maintain an a for the entire year in Chinese...which is amazing!


Alison got on honor roll....which if you don't think that miracles happen now, then you don't know Alison and school work. I was in shock! We have also started doing a new vitamin therapy for her and it has done wonders for her.

Edwin, well that kid is becoming like a real boy. Like pranking his sisters by putting earthworms in the tub and he also will tell us the school bus is here to get him, sending us into a rushed panic and the bus hasn't even come. I am not sure if I put this on here yet, but the boy is off of penicillin shots every 3 weeks and now takes a pill twice a day. They were able to take him off because his heart shows no sign of damage from Rheumatic Heart disease now.

Tobey Jude, well this boy has said three sentences "Is it raining?", "Tobey a fart", and "Go to sleep now Bob!". How cool is that? I love hearing that little voice! I have a feeling that I will be hearing it tell the eye Dr "No" today also :).

Emily, well she is 7....you got that.

Melody is ready for school to be over, she still doesn't understand why preschool was 3 days a week and Menominee is 5. We have also found out that if she has a spring program and has a band aid on her that she will not bother performing. Weirdo!

Now, I didn't forget about Olivia....but Eddie needs to get off the phone so he can put a picture on here. You may ask...why do I need a picture of Olivia on here? It's because for some unknown reason she decided to write all over her face at school. She is 10! The note that the teacher sent the nurse said that Olivia needed to see her for "obvious reasons" and the nurse made us call Eddie and I. It was hard not to laugh...what parent expects to get a call that their 10 year old (bears repeating) has marked her entire face. She also tried to tell us it was an accident. I will let you be the judge.....

So, Eddie and I were called into the principal's office (first time since we have been at Plymouth) she showed us the picture.

Here was my initial thoughts...

• I would not want to meet this kid in a dark alley.
• We are no longer going to keep our tattoo kit unlocked.
• Why just one color? Can't we at least change it up?
• At least she wasn't sniffing the markers....
• She used washable marker, right?
• It's not easy being green, but it easy becoming green.
• Giving the kids holy water with their dinner may become routine.
• I knew that she liked freckles, but the goatee threw me for a loop.
• Where are your glasses?

Hello....

I know that I haven't posted very many blogs lately....I have been writing them, but they just sit in draft form. See, when I blog, I just throw it all out there.

But...when there is something else going on, it just doesn't feel right talking about something cute Emily said or what I made for dinner. When you have things happening in your life, they take over.  I still have to make dinner.   The other kids are still cute.   Edwin still wants to kill us.   But, none of that seems to matter.

We decided a while back to do genetic testing, and it was not an easy decision. It required talking about past miscarriages, family addictions, and life pre-2008.  Not to mention the down time waiting to hear what the heck is wrong with your genes in the first place!  It also required hours of paperwork and trying to get as much family history as we could all the while dealing with closed off family members and knowing really nothing about my Mom's history (she was adopted).  But there are questions that we and our doctors needed answers to.

Why do I have seven kids, but I was pregnant 13 times?
Why do three of my kids have autism?
Why do I have a shoe box that is overflowing with the daily medications for my kids?

I wanted to do genetic testing to give my kids every bit of information for when they have families on their own.  I don't want to see them suffer through misarriages or be suprised if their child doesn't talk.  I wanted them to have information on their genetic history. 

I had great intentions.  But, I was very naive about the emotional aspect of it.

We made our first trip to Riley Genetics on March 15th with Edwin, Tobey and Melody in tow. The Dr. was amazing.  After a lengthy physical exam, he seemed to think that he knew what to test for.  He also said that he thought it was a gene mutation on one of our sides (I am totally blaming Eddie) that has caused us so many issues...including the 'tism.

And that hit me hard.   I never in a million years thought we would know how and why the kids had Autism...I came to peace with that years ago and had accepted that nobody knows why they have Autism. Eddie and I hardly talked the whole way home (that has never happened before).

A few weeks later we got the phone call from Genetics and were told that Tobey has a duplication in his 17th chromosome. But, because of all of the information, they could not discuss it over the phone.  So we made an appointment for two weeks out.   It was as soon as we could get in, but for me, it may as well have been a year.  

My mind wandered and I knew I had to find out what I was dealing with.  Immediately I looked it up on Web MD(very bad idea) and all I could see was horrible mutations and memorials for kids that died.  I went into panic mode.  

I just imagined all of the things that could take my boy away from me.   I literally lost nights of sleep over it.  

Two weeks passed and we had the ACTUAL consult this past Thursday.  And, as it turns out, it is not so bad.  The specific mutation Tobey has is on his 17th chromosome on the Q22 segment.   He has something in the area of 2.5 million gene replications here.   Now, they have seen a lot of people (in this case, kids) with this.  In some cases, they were absolutely normal, but in most cases, the people had autism, low muscle tone, ADHD, behavior issues, and in some cases, epilepsy.   So, the only thing we are going to do differently is move forward with a long length EEG to test the Tobey Jude for seizures.   Other than that, his care is no different, and they saw no reason that he wouldn't live a long healthy life of jumping and vacuuming. 

Also, they are hooking us up with RCDC ( I don't remember the words in the acronym)...They will look at our case and put Tobey with the EXACT right specialists for him for everything.   HOLLA!  The only downside to our visit was finding out that there is NOT a genetic test for Ellers-Danlo(which they believe the kids have...man I have used a lot of parentheses).   You just get diagnosed with it.   But, it is not a big deal, the kids just can't ever fight in MMA (sorry Eddie).

We also had the priviledge (and I DO MEAN PRIVILEDGE...we were honored) of travelling with Chuck, Diane, and Sarah from Living Stones.   If there are three better people in this world, I haven't met them yet.  Thank you  *cough cough DISNEY cough cough*   Man, these allergies!  

So
tomorrow, Tobey has an echo cardiagram as a precaution for his dental surgery in June.   Other than that, Not much more news...except of course...WE ARE GETTING SENTENCES FROM HIM!!!  
"Is it raining?"
"I want ice cream"
"Give me Tink (the cat)"
"Geopolitically speaking, North Korea is at a very precocious stage as it pertains to world security.   I truly hope they do not posses the capabilities of nuclear warfare.  Tickle?!"

OK, I may have embellished the last a little...

So, where am I going with all this?   Easy.   Riding the Tobey Jude roller coaster has many ups and downs, but I am sure glad I am riding!  

I will update about the rest of the kids later.   It's all good, mostly!   But, until then, my friends, I will talk to you later!