Genetics Appointment

You would think that after all the times we have made the trek down to Children's Hospital in Dallas that we wouldn't get confused the moment we pull onto the property. But of course we did and we ended up parking a good 2 miles from where we needed to be. Thank goodness they have a skybridge that connects all the buildings and really nice people to help lost souls find there way. 

Ben broke his all time record by clearing out our half of the waiting room within 3 minutes of our arrival. No one seemed apologetic about abruptly getting up and walking to the other side even when there were no seats left over there and it was already very crowded. People were literally standing in other people's way just to get away from us!!!!

To make a long story short the doctor was extremely nice and felt that Ben was definitely on the autism spectrum. She doesn't think he has a syndrome because he has no abnormal features or bone structure. But she thinks it is worth checking out. They are going to do a full DNA test that would show any abnormalities anywhere in his DNA. Essentially there are three things that could come from this. Nothing, which would tell us Ben's medical issues are all separate issues that have nothing to do with each other. Or it could tell us Ben has a specific syndrome or thirdly it could tell us there are some abnormalities in his genes but without the genome project being completed yet!!! and without his parents' full medical histories and their blood it is impossible to truly understand what is going on with him. The doctor told us that the wait on the blood work would be about 3 weeks.

Because our life just wouldn't be normal without some chaos, I will fill you in on what happened next. We went down to the lab to do the blood draw. To keep Ben busy while waiting for our turn Rob and I took turns walking Ben around in his stroller in the lobby. We had just enough room to make a large circle path. The lobby's ceiling was several stories high and Ben quickly figured out that this made perfect acoustics for him to hear his echo. Now, some people thought this little guy riding around in his stroller in a large circle in the middle of the lobby screaming different sounds was adorable. But others were giving us looks that made us believe they didn't think our little man was "oh so cute"!!!

Finally, it was our turn. A nice lab tech did a great job teaching Robbie and I how to hold Ben so she could safely take his blood. Quick and easy. But it wasn't until we had Ben back in his stroller that she realized she needed a little more blood. I never knew you could get so much blood from a simple finger stick. But she was able to "milk" his finger and get the blood really flowing. It took longer then the original stick and a few more muscles from Rob and I but overall no big deal. She held pressure with gauze added a bandaid and sent us on our way. We got out to the lobby and I looked down and Ben who was furiously ripping at his bandaid and blood was literally shooting from his finger. I'm not lying to you. Blood was all over his shirt and pants (of course I thought he should wear a brand new church outfit to the doctor!!!!) his face, hair, stuffed Elmo, sippy cup, stroller and even the floor. Everyone was staring at us and some really nice employee ran over to help. I am not kidding this place has nice employees coming out of the woodwork. If you are nice and looking for a job in this crazy economy you might want to apply to be a "nice, helpful person" down at Children's. Anyway, we told the lady we were fine and she said, "Well behind this door is a room full of doctors in a meeting if you think you need help." Seriously, what happy pill did she take and were can I get one??? Anyway, we somewhat got our mess cleaned up and we took off for our long walk back to the car. But boy did we get some funny looks! Ben still had blood pouring out of his finger, his face, hair and hands were blood stained and he looked like someone had taken a hose full of blood and sprayed it on his clothes. Even I had blood sprayed all over my white shirt and hands.

We are now home and resting from our adventure and the blood stained clothes are soaking in the washer...

Potty Training

So we are ready. At least physically for Tuesday. We are going to start potty training on Tuesday. First, we are going to see the genetics doctor at Children's on Monday. We have been waiting since the beginning of last April, seriously a doctor with a 10 month + wait. He/she better be good!! We aren't expecting any answers tomorrow. I will even be floored if they take blood. It will probably be a question answer session in which we are barely able to hear the doctor over Ben's impatient screams. But who can blame him, who likes to be locked in a little, cold, white room waiting for a doctor to come? We are hoping the doctor can eventually answer why our little man has so many obstacles to over come. Is there a reason (syndrome, etc) or did he just get a crappy hand. Anyway, there will be news some day, hopefully soon, to share. I am trying not to get to hyped up on getting anything out of tomorrow because I don't want to be disappointed and frustrated like I ALWAYS am when we leave a doctor's appt. We have been waiting for over 3 years for answers I am sure we can wait longer, with God's help. 

But back to potty training. Ben, Bec  and I made a trip to Target on our snow day last week, now that is a whole other story. Ben may NEVER darken the door of Target again and I don't think he or Target employees will mind. I digress, sorry. We bought all the necessary items. A bazillion pair of Elmo underpants, etc. Now this is no typical potty training regimen. It is one written by some experts that work with kiddos with special needs (I won't bore you with their names, titles) that the Total Language Classrooms in Frisco have adapted.  Now, this thing works. Quick too, typically, so cross your fingers that Ben again shows his brilliance and catches on. Of course, if you were making me walk from were I had an accident to the potty, pull down my pants, sit on the potty pull back up my wet pants and walk back to the spot I had the accident 5 times AND then had me clean up the mess all before I got to change into dry clothes I might learn too!!!! Between accidents he has to "check" himself every five minutes. And if he stays dry for 30 minutes he then has to sit on the potty for up to 20 minutes to see if he voids. Can you imagine making Ben sit on a potty for 20 minutes? I can and it is U-G-L-Y!!!!! If he does go or initiates and is successful going a "big party" will begin with tons of reinforcers. After he initiates going we can stop scheduling potty times. Then when he initiates and is successful 20 times in a row we can quit forcing him to drink tons of fluids. He is suppossed to be drinking continuely during this process. (We took 20 Capri Suns to school to prepare) This is going to be so time consuming for us and his teachers but so worth it. Speaking of his teachers, God has blessed us with the most amazing teachers for Ben, truly they are awesome and we owe them so much. They have gotten Ben to do things we never could have imagined. Anyway, this is more than you probably ever wanted to know about potty training. Sorry to bore you with the details, but please keep Ben, us and his teachers in your thoughts this coming week!!!

25 (really 26) Things About Me

This is something people are doing on Facebook, so I wanted to post it on here too. I had to break the rules just a little and do 26.

1. Meeting Rob was the best thing that ever happened to me. I called my mom the next day and told her I had met the man I was going to marry. When she asked me about him I didn’t have much to say because I had only talked with him about 5 minutes but I just knew. Rob has been the best husband and friend I could ever ask for. He has been my rock in hard times and supported me in everything. He still makes me laugh and he still makes me weak in the knees! I am so proud of him and all of his accomplishments. He is also the best father I could have picked for my children. Raising a family with him has been wonderful.
2. I admire my daughter so much. The wisdom that flows from her mouth is so mature that sometimes I can’t believe what I am hearing. She has taken her brother’s disability in stride and she truly loves him. Since the day we adopted Ben her patience with him and all the changes he brought along has been amazing. She is enthusiastic for life beyond belief and she gives everything she’s got in all situations, she never holds back!! I am blessed to be her mom.
3. From the moment I laid eyes on Ben I knew he had to be ours. Adopting him was one of the most incredible decisions Rob and I have ever made. We had no idea what we were getting into but we knew we had more love to give and we desperately wanted another child. Life with Ben has had its ups and downs but the highs outweigh the lows a million times over. Ben has taught me more about love, life and loss then anything else ever has. Every day Ben amazes me with his ability to learn, love and persevere. He is truly an amazing child who has filled my heart with more love than I knew I could have. I am proud to be his mommy.
4. If I had my life to do over I wouldn’t change a thing, not one second, not one breath.
5. I am convinced you can learn everything you ever need to know in life on the soccer field.
6. I don’t think you could ever pay a teacher enough.
7. I think being a parent is the hardest job in the world but the most rewarding.
8. If you have to take test to drive a car why don’t you have to take a test to parent? Seriously.
9. I love to cook and wish I had more time to do it. I also love to read cookbooks and have a collection of well over 100.
10. I think every little girl (and big girl) needs a big brother. I wish Becca had one. My brother Kevin has always been my biggest cheerleader and advocate.
11. My dad is the smartest man I know. He is also a lot of fun to hang out with. I think it is very telling of what kind of parent you are when your kids grow up and they want to hang out with you because they consider you a friend. I feel this way about both of my parents. I am a lucky girl.
12. My mom is an incredible artist. It is amazing to me what she can do with a few pastels and a piece of paper. I am so proud of her hard work!!
13. I am scared of snakes, fire, drowning, and artificial sweeteners and colorings.
14. I still want to run a marathon, bungee jump, sky dive and go to culinary school.
15. I still believe in Santa.
16. I love working with children that have autism. It is truly my passion. I think these kiddos have a lot to say about the world that we are just not tuned into and too dense to figure out!!
17. I wish I had had the chance to meet my Granddaddy Parker, my mom’s dad.
18. I wish I had more self-discipline and that I took better care of myself!!
19. I am so disorganized, I try but I just can’t do it!! Thank goodness Rob keeps me in line otherwise I know I would forget to do everything.
20. I love sports. I find myself watching golf on TV when there are no other sports to watch. March madness is my favorite!!! I have always wanted to take time off of work so I can just sit and watch all the games.
21. I am VERY competitive. It is bad. I am in it to win it. I drive Rob crazy. We fight (I fight!!!) over Wii games, basketball games in the pool, etc. Everything is about keeping score. Poor Rob ……. (By the way, I won both of my football pools this year, pro and college and I plan on winning basketball)
22. I hate the mall. I hate to shop. Unless it is Target and I can put some money down at Target
23. My favorite saying is “Peace Out!” I say it all the time. I didn’t realize it until my friends pointed it out. Even my adorable 4-year-old niece started saying it over Christmas. I was very proud!!! .
24. I am very opinionated and out spoken, but I think everyone knows that.
25. Some of the best friends I have ever had in my life I have made at my current job. They get me. They understand Ben and the struggles of raising a child with disabilities. They truly care and love me for me. I love them and am blessed by them daily.
26. I am blessed. I love my life and am grateful for my beautiful children and amazing husband.

Changes

Has it really been over two month since I last blogged?? Good heavens. The holidays were joyous and very busy. My family came the 26th and all 11 of us cramped into the house along with the crazy dogs. Boy was it worth it!! What a blast we had. I got to meet my beautiful niece Kelsey and hang out with my incredible family. The highlight for the little girls, and I think the big girls too, was a trip to the American Girl doll store. I think all of us ladies could have spent a million dollars on clothes and accessories. I guess I did a lot of talking about it because sweet Rob surprised me with my own doll a few days later!!!

We have made some incredible strides since the beginning of this year. With the awesome encouragement of our family trainer, yes it takes a trainer to help Rob and I get our stuff in order!!! We have gotten Ben sleeping through the night!!!!!!!!! It seems amazing we really did it after fighting him for 3 and 1/2 years. We have gone from awakening 10-20 times a night (literally) to all of us sleeping peacefully. The sad thing is, all it took was me talking to Ben about it, priming him, and us ignoring his cries and outbursts during the night. Now don't get me wrong, Ben does still wake up, but Rob and I just roll over knowing he has given up on us. He is now calling for all other family members and his teachers. So if you hear a pitiful "Jo Jo", "Kevin" or "Nurse Pam" in the middle of the night just roll over he will give up on you too, eventually!!!  

We all feel much more rested and ecstatic  that this is finally under control.

The crazy thing is we have now realized Ben understands so much more than we ever imagined. It is amazing and awesome but I do feel guilty I never clued into this before. Anyway, now that we know this we are able to combat so many behaviors before they even began by preparing him for changes, etc. Yes, I feel so dumb, I tell parents this all day, "Just prime him before hand" "Explain what is going on". But I guess with Ben there have been so many mysteries we were never able to focus on what he could actually do versus what he couldn't do. I think I have spent so much time worried about what he was missing out on and what he couldn't do that I wasn't seeing the incredible things he was able to do and understand. I think this has opened a whole new window for us. I told Ben the other day "Go get a kleenex from the bathroom and wipe your nose." Lo and behold the sweet pumpkin did exactly that and then took it to the kitchen trash can and threw it away!!! SERIOUSLY, what have I been doing?? I think it is called mourning, worrying and feeling sorry for myself and Ben. Good God I love the adorable kid but his life is about to change and so is ours, sorry Buddy Boy but we will all be the better for it!!