The guilt rolls in.

It's been awhile, it's funny how I write more when life feels out of control or challenging. Everything has been going really well recently. Andrew has been trying to get me to take a break from life for about a year now, just take a few days and go recharge. I finally have taken him up on it, I have a 4 night/ 5 day trip booked and paid for now all i have left to do is pack and actually go. I've been really excited for months about it but this last week it's really hit me that I'll be going... and the kids and Andrew will be staying home.... enter the guilt.

It's not even so much guilt as I can't even really think of a word to describe it... I guess sadness and envy. I'm sad that I know deep down JJ could not handle a trip to Disney World right now. The noise, the people, the waiting, the buses it would all equal a lot of melt downs and not much fun for either of us. While booking the trip I fought with myself so much on whether I should bring him or not. I called to add him a few time and talked myself out of it. I know I made the right decision but it hurts knowing he can not handle it. I'm also so glad that I know my son well enough to know he can not handle it.

JJ has come so far in being able to tell me when something is over whelming for him. I'm beyond grateful for that. He is learning how to get out of a situation before a total melt down. I was going to being him to a local monster truck show this past weekend, the tickets where not exactly cheap. I decided before I bought them I would show JJ a video he watched it for a few seconds and told me it was to loud he did not want to go. So needless to say I'm glad I saved the money. You tube has become my best friend when it comes to prepping JJ for something. There is pretty much a video of everything we would ever do so I can see his response and figure out a game plan ahead of time.

This week i'll spend my time getting ready for my trip, making my lists, shopping for those last minute things. Getting all the kids stuff ready for me to be gone (even tho my wonderful husband has told me time and time again he knows where the grocery store is and knows how to put things in a cart and pay lol) I still feel bad if I leave him with a big to-do list while i'm off staying up late, sleeping in and enjoying meals.... while their still hot!

Christmas Eve Party= Success!!

Christmas time this year flew by! I swear I blinked on Black Friday and next thing I knew it was Christmas Eve! We did our usual Christmas routine, we went to Uncle Jake's house for his Christmas Eve party which this year JJ went inside!! Yes you read that right I am so happy he actually went inside! We have been going to "Uncle Jake's Mommy and Daddy's Christmas party" for 3 yes 3 years now and never once have we made it past the front room. Every year we walk in and go about 3 steps in the door to the first couch and that is where we spend the night, away from the crowd, away from noise, away from fun. But not this year! This year John decided that it was cold right next to the door and maybe we could find another corner that was still quiet but maybe warmer. So off we went for a warm corner we walked threw all the people over to the living room next to the fire place. John took off his coat (one thing about John is he WILL NOT take off his jacket if he is uncomfortable. I swear it's so he can run out the door at any given second if he doesn't like whats going on) but anyway he took off his jacket.... then his shoes. My boy was VERY comfortable! One thing you have to understand is Uncle Jake (Uncle Jake is Andrew's best friend, he met JJ when JJ was about 2, right after JJ was diagnosed with autism) is that Uncle Jake is one of the most sincere, nicest people you will every meet. Also Uncle Jake loves JJ and Julia, in a way only and Uncle could. And of course Uncle Jake gives the best gifts... electric drum sets for a 3 year old.... yes those kinds of "best gifts" but we love Uncle Jake! Uncle Jake has always went well out of his way at his Xmas Eve party to make sure JJ is comfortable. This year JJ fell in love with Jake's dad... who well he tried to get JJ to call him Uncle Leo will always be known as "Uncle Jake's Dad". JJ spent most of the night letting Uncle Jake's Dad know when the fire was low. He talked to Uncle Jake's Dad, he played with a little girl about his age and just had the best time!!

Autism.. a family diagnosis.

On nights like tonight it's thrown in my face that autism really affects the entire family, especially Julia. At John's school tonight they held their annual family holiday fair. Last year John LOVED it! Well this year was a much different story, I don't know if it was the classroom change, the star he couldn't have, mommy talking to the other adults, Julia having a blast, or hell maybe the stars were just not in alignment tonight whatever it was made it a disaster.
I should have know when we walked in and John wanted to go right into his classroom which was not one of the open rooms, but I thought we could power threw.... how wrong I was. We started upstairs in his old classroom and they had the star of the day star hanging on the bored.... John wanted it.... and no was juts not working so we left that room and tried the arts and crafts room (Julia's favorite!) John wouldn't step foot inside. Julia went ahead in with Andrew she looked so proud, so happy to be in school! She sat down at the table with all the big kids and painted her tree. She would have stayed there all night had she be given the choice. After about 10 minutes we attempted the  movie room again (passing the music room which is something Julia would love), John was not having it so again Julia went in with Andrew and when I say "went in with Andrew" really she walked in all by herself and Daddy followed her so she didn't get lost. She went up to the teacher she never met and asked if she could please have a water, sat down and watched the movie with the kids. She had a blast!
Like many other things it was cut short. John could not deal, we had to leave knowing full well it was not fair to Julia. Knowing Julia could stay and play till it ended, we put on her coat and left promising that when we got home John would be going to bed and Julia could stay up and paint. John cried all the way home while Julia talked about colors. At home John screamed in bed while Julia painted her little heart out and I watched and couldn't help but question how much will she miss out on in life?

Beating Autism.

Alone. Being alone always sounds like a great idea and the first 2 hours are great, I can lay around and watch TV without being asked a million questions. But after 2 hours its just lonely. John started his very first day of typical school today. It felt like it was his very first day of school (he's not even changing buildings just a different class room.... its even on the same floor) but I was so nervous, and to make matters worse I let his dad drop him off and pick him up. It shouldn't have mattered he's been to that school, walked in that door hundreds of times but today was different, today he was in the typical class. Two years ago I had this dream for him to go into a typical class by the end of elementary school, he did it less than 2 full years.
John is growing by leaps and bounds every day, I know he will do great things in life, but as he grows it's becoming more and more clear he was misdiagnosed with autism. I hate the term "misdiagnosed with autism", I don't feel it's far or right. He has (and still has to a much smaller degree) problems, but he has worked his tail off for over 2 years now, when other kids were on play dates John was stuck in rooms with specialists, other kids went to the zoo John went to early intervention, aba, floor time ect. He's worked so hard to come so far and to be told sorry kid it was all for nothing. No I don't accept that. I was at John's IEP meeting last week and the principle and teacher both suggested maybe John was misdiagnosed. No we were lucky, damn lucky that we caught John early, that we had the resources to get all the therapy he needed, that I made a choice to do everything in my power no matter what the cost. And let me tell you the price tag was high, my first marriage went up in flames mostly over not agreeing on how to handle autism, we lost our home because I had to be home for John's therapy, hell even when I remarried our wedding day was effected by autism, we gave up our dream wedding to be married earlier and have better support for the kids. Our entire life for the last 2 and half years has been autism, it consumed us just like a cancer patient's family is consumed with a diagnosis. But when your in remission your considered to have "beat it" but if you no longer fit the autism spectrum your misdiagnosed.. not in my book in my book John "beat it". So when we go back to the neurologist in a few short months and John is reevaluated and if he does not meet the "spectrum"  anymore I wont be mad that he was misdiagnosed, I'll do the same thing I did when my best friend "beat cancer" I'll throw a party, I'll pack our bags and go wherever John wants to go. I'll be prouder than I've ever been and I'll hold my husbands hand and say "we did it".

Thanksgiving

Thankfulness... This year I have so much to be thankful for. I'm thankful for my children they have made me who I am today. John has opened my eyes to a whole world I didn't know existed, he has taught me compassion, patients, acceptance, and to love unconditionally. He has taught me to value of a good teacher, the power of a hug, and to never take language for granted. 

 My sweet sweet Julia. She has show me a whole different side of parenting, an easier side. She has taught me the power of language at a young age, the joy is "cooking",  the closeness of putting in a pony tail and singing twinkle twinkle little star. Her excitement for life is amazing and I can not help but smile when she is around. 

My husband, who keeps me grounded, who can put a smile on my face with a simple text, who has been known to drive 2 plus hours to bring me a sandwich when Julia is in the hospital and I just couldn't leave her side. Who taught me it really is okay to take time for just me, that I deserve to take a break from life, that I can do anything I want to. Who showed me what true love really is. 

My in laws who accepted me and my children with open arms, who are the type of grandparents every child should have. They are a much bigger help than they even know. 

My siblings we are closer now than we ever where growing up, we are now all great friends. They are amazing aunts and uncles. 

Autism... yes I'm thankful my view on life has been expanded. That I can really truly understand what other parents go threw, that I just get it and I have something to be passionate about. 

Cold, Colds and more Colds!

We've had a busy few weeks. When my kids get sick they get real sick real fast. Tuesday night Julia felt a little warm like maybe she was coming down with a cold, I took her to the pediatrician Wednesday morning for what looked like conjunctivitis, but they didn't like the red around her eye so they sent us to the ER at Children's. The ER doctor was very very nice she was hopeful that as long as Julia's white count was under 15,000 we could go home and just watch her closely, but her white count was up to 18,000 so by Wednesday afternoon she was admitted to Children's Hospital in Boston. She had a sinus infection that turned into cellulites. We only had to stay for 1 night this time around because we caught it nice and early. This time she got a lot sicker than last time, she spiked a high fever 103.9, she was just miserable. The next morning after some IV fluids and IV antibiotics she was good as new and after a long day of waiting for discharge papers we got to go home Thursday afternoon.

Saturday John felt a little warm and started getting a cough. Sunday he still was not much better so we took him to the pediatrician (on a side note their old pediatrician was covering yay!! I really loved her!) but she wasn't sure if she heard asthma or pneumonia so she sent him for a chest x-ray just to be on the safe side. Seeing how it was a Sunday radiology was dead, so we got right in for the x-ray. After the x-ray the man doing it let JJ look at his x-ray and was showing JJ all the bones, JJ thought that was awesome! A few hours later the doctor called back to say he did have pneumonia (again) and we should start him on breathing treatments to keep his asthma under control and antibiotics (again). I really do respect this doctor so I asked her opinion if she thinks all these infections could be a side effect from his medication. She thinks it's just from being in school that he's catching a lot of things. I'm still not overly convinced of that so I'm waiting for a call back from his neurologist, at the very least the nurse from neurology I talked to this morning agreed it would be a good idea to do some blood work and make sure his white counts are back where they should be. I'm going to be asking the neurologist about referring him to a lung doctor, this is the 4th lung infection in 2 months and he's gotten asthma in the last 4 months as well.

On a very big positive note we will be switching JJ into a mainstream prechool class after Thanksgiving! My personal goal for JJ was to be mainstream by kindergarten gives us so much hope! I'm so proud of him!

Pumpkin Hunt and the Air Horn.

Some times autism just plain sucks! There's no sugar coating it, no back  up plan, no distraction. There's only running, running as fast as you can out of the situation before a group of strangers see the silent tears streaming down your face.
Today was a town sponsored pumpkin hunt (it's a bunch of plastic eggs filled with candy that the kids run around and collect) Last year it went GREAT, it was one of my best memories with John.... this year not so much. It was outside this year, I thought that would make it easier on JJ I was wrong. We put on his motorcycle rider costume and went and played at the park because we were early, of course we were early on purpose so he could get comfortable with the change from last year. About 10 minutes later it's time to go over for the hunt. I decided I could do this alone with JJ, so I left Andrew and Julia at the playground took JJ's hand and headed to the field. There were about 20 kids there all dressed up in anything ranging from clowns to GI Joe to Cops... complete with a whistle. I walked John over to a quiet section of field and explained the rules to him. No running, No hitting, No grabbing pumpkins from other kids. Then it was time to start, all the kids lined up then the volunteer sounded the air horn. That was the end of us. JJ started crying and clung to me saying over and over again "No loud noise". We walked away from the field both of us crying silent tears holding onto each other.
It was another reminded of how different our lives really are, a reminder that we've come so far but still have so much further to go. A reminder that sometimes a moms love just isn't enough. So we left and went to the playground, I got a much needed hug from my husband, JJ got to run around and go down the slide with his little sister. Then we went to Friendly's for dinner because sometimes you just need to see your kid happy, and if toppings will do that then damn it it's toppings for dinner. (Yes just the toppings please, no ice cream!)