December Already?

Sorry blog for I have neglected you! But I have been busy. I am working 2-3 days a week now. Joey started occupational therapy. He is continuing speech therapy. We are currently off the gluten free diet. I wanted to share what our typical week looks like-
Mon- Dad works till 7am, Mom works from 8-6 then we do dinner and bed time stuff and bed about 12am.
Tues-Same exact thing, we did have class from 6-9 but it has ended!
Wed-Mom stays home- OT @ 1030 and usually grocery shopping
Thurs-No commitments! woohoo Some times we do play group @ 900 am
Fri-Joey is starting an OT sensory play group in Jan. Speech @ 230
Sat-Church @ 6pm
Sun-Football and sometimes dinner @ The Great Grandparents

There are a million other little extra things we have been doing each week also. Last week, We did family pictures, which was an experience in its own! I am thankful for the wonderful shots we did achieve though! 

We spent 5 days in Oregon at my parents for Thanksgiving. We had a great time. Nick and I even got to sneak away on Black Friday and get most of our Christmas shopping done. Not only was it nice to spend some time together but also a quick shopping trip for the holiday. I have not put up a Christmas tree, as I am fearful of how Joey will treat it, or react to the sensory effect of the lights. So needless to say I'm not really feeling the holiday cheer. I hung our stockings and wrote out my Christmas cards. I haven't made bread, or cookies, or crafts. There is a paper wreath hanging that Joey made though. We experienced our first taste of the cold season too. Joey ran a 100 to 102 fever for 3 days, has a runny nose and cough. We are going on 5 days so far. Nick sort of pulled out his back but of course he is toughing it and working through it as he usually does. I have really been enjoying working. I am getting to do so much more than I learned in school. On a side note, as much as I felt like I was so ready leaving school, I felt confident and knowledgeable, I have learned so much more in 2 months working then I learned in 9 months in school. I was some what disappointed in PIMA when it comes to the proficiency of the basic tasks, yet I was appreciative that I learned front desk unlike some of the other colleges. You win some, you lose some.

Joey is in the process of doing genetic testing. He is talking some, says all gone, all done, and I got it! He is really in to Cars right now. We bought some news toys to help with his developmental delays. We just keep working hard and praying. For that is really all we can do.

Here is a composed list of some of my favorite Autism websites,

MyAutismTeam

SafeMinds

Talk About Curing Autism

Generation Rescue

My Five Men- Blog by Betsy

Friday Fun!

What were doing today?
A.m. -Got coffee at Starbucks wonderfully made Venti Extra shot Peppermint Mocha Then got muffin paper liners. Came home and made triple berry muffins (Joey made them!) Played with cornstarch and water mixture! It was a blast to see Joey really starting to open up to sensory things. The feeling of the cornstarch was even a little hard for me to get used to. So he did a good job! Then the Husband came home from work. We went over Joeys childrens hospital assessments. Nick did dishes. Jessica is packing and moving out today. 
Afternoon-Going to look at houses up north. The bothell lynnwood area. I guess I should start looking now. 
P.m.- For dinner I'm going to make Pineapple Chicken maybe on the bbq. With some Mac-n-cheese along side, and salad! Sounds weird but yummy! 

Happy Friday to everyone!

Updating.

I am reaching the end of my extern hours finally! I can't believe how long it has taken me, granted I did have a tonsillectomy mid way through, but most of all I'm surprised at how much I have learned. I have been really fortunate to get the opportunity to full fill my hours at not one, not two, but 5 offices. Each office has been unique in its very own way. Every Doctor I have worked alongside has also been special and different. I have learned so much more then I ever imagined. I am especially grateful for the "foot in the door" Kristen has given me. I was more nervous about working with her then anyone or anywhere else. Not to many years ago I was in the teacher position showing her some of what I knew about retail. Boy have the tables turned. I feel like a lost puppy needing guidance in the dental world. Kristen has been respectful, and encouraging. I feel bad that I often let my nervousness get the best of me. I am hoping in the following week that I will be able to spread my wings a little and shine to show the office what I am really capable of. 


Nick on the other hand has been doing an amazing job working with Joey doing at home therapies. We have a long road to go and starting now making the progress we have already seen is helping us to stay focused. 


Our lease will be ending (yay!!) in December. We couldn't be more excited to be moving. We are looking for a house that fits our needs and wants. Thus far we have found quite a few that we like, the hardest part will be deciding where we want to live, Federal way, Kent, or maybe Renton. I just keep chugging along knowing that Joey will love a back yard. He needs to be a boy. I want a house with a separate family room so that he can have a play room. Nick severely needs a garage and a drive way. I want a kitchen and patio so we can have holidays and parties. It's going to be exciting to get into a house again. Bye bye apartment living! 


Lastly, I want to sign off by saying Thank you to those who have been supportive of Joseph. Nick and I have come to a point in our lives where the drama must go, those who "just don't get it" must go, and we have to deeply and passionately focus on bringing Joey back into our world. He deserves the best treatments, and therapies money can buy. I need my family and my friends to be supportive in many ways. I hope we all can work hard to make the holidays easy yet memorable for him.     

on to the next...

We've been doing great on the gluten free diet thus far. Its been 2 months and Joey has continued to make progress. I wanted to share our current list of vocabulary;


up down mama dada ball dont stop yes no hi hello dog duck come good tree one two three woooow thank you cookie tickle please open more apple
quack cheep ribit tweet moo meow woof neeeigh
check this out. i did it. i got it.


Amazingness!


Speech therapy is making its way along. We are doing that in home every week.


He was evaluated at Children's hospital this week. He did a hour long evaluation with the occupational therapist. Where he blew through each task she asked him to complete. (Why can't he do that at home?)


Nick and I are continuing our More than words class on Tuesday nights. We have learned so much already. The techniques have helped Joey to better communicate and we all are having more patience with each other.


It's the start of the fall season, the weather is quickly getting cold on us, the trees are losing their leaves, and I'm thinking about soup and sandwiches. I made fried zucchini this week, enjoyed some heirloom brown cherry tomatoes, and had a wonderful brown sugar acorn squash. Nothing better than enjoying the seasonal foods each year. I think I've decided fall is my favorite time of year.


The things to do with a child who has Autism are few and far in between this time of year as the weather keeps us in doors. I had a great idea to try out with him, we painted with poster paints 3 we-be-little pumpkins. I want to give one to my Mom and Dad, one to Nicks grandparents and keep one on our table. I need to pick up a few more of the gourds to make a nice table center piece but I think it is coming along nicely. He did a pretty good job staying on task and focused on the activity. This was the first time Joey has painted anything and to my surprise he loved it! 

Gluten free we shall be!!

Never in my son's little life has he spoke and added words to his vocab at the alarming rate of 10 a day like he has the last two days. I read several books the last few weeks bowing down to the Gluten free world of food for Autistic children. They swore up and down how with in a few days or weeks their child was speaking and behaving so much more appropriately. Well after an epic tummy ache and a melt down, due to ingesting gluten some screaming and crying we rushed to the grocery store to stock up on some Joey safe foods. He took a probiotics for children and ate some food, he turned from a demon child to a little angel. No screaming no crying no tummy ache. We had eye contact, words, focus, he was playing with his toys in the "correct" way and he was so loving to his Mommy and Daddy. 

I became a believer. I have made a vow to God to do whatever it takes to prevent him from ever eating gluten again. For the first time in about 6 months Joey said Mom. He didn't just say it once he said it 3 or 4 times in a row, a good ole' MOM MOM MOM!! I instantly started crying tears of sheer joy! He's has become a whole new person. It's like he was trapped inside his own little world lost and looking for help. He is starting to enter our world. 

To date he has said, yum, mom, dad, no, stop, yes, food, fuck(not great by he did use his words lol), up, down, hot and on. Were sure we missed a word or two because we can't keep up! It is a grace from God at this moment in time. We are continuing to work with him on his signing, but in realty he is getting the talking faster anyway. 

I know things will be different for Joey, no cookies from Grandma, no happy meals, and he may have a hard time with not eating school lunches like the other kids, but I know its all for the better. I am so proud and excited, but now I must start getting together more GF recipes! 

Happy 2nd Birthday Joseph!

It brings big soppy wet tears to my mascara smeared eyes on this beautiful September morning to celebrate my son's second birthday! I am as happy and joyful as any mother should be! We modified our celebration plans this year to accommodate Joey's autism, sensory overload is easy with tons of cake and ice cream and people and presents, my goal as his Mom, his only voice for now, is to make sure he has the best birthday possible. We went up to Camp-run-a-muk yesterday. It was fantastic to see the whole family! It was Joey's Great Grandma's 70th Birthday party! Joey played at the park with Ray Ray for over 2 and half hours. It was so amazing to see him playing with another child. He did however starting climbing the stairs and going down the slide by himself after about 20 minutes. He continued to do that the rest of the time. We had to do the usual drive him around to get him to nap, but were used to that by now. He didn't eat a whole lot which is pretty normal when hes in a new place and playing so much. We decided to have Ray Ray come back with us to have a slumber party! We drove back around 6:30 got home around 7:30. The kids were so cute sitting at the little table eating their dinner. After, we had a crazy wet bath time. Followed by snuggle time on the love seat watching Lion King. They ate little cups of chocolate pudding. That required a t-shirt change for Joey. I got both of them to sleep by 10 pm, a large feet in its own.

This morning Joey was up first at about 8. I made maple sausage, red home fries, and scrambled eggs. Joey ate sausage. Ray and Joey are all dressed and ready to go. We're headed to the Supermall to go to the jump jump. It's a place that has the big air filled jumpy's and slides. I have wanted to take Joey for some time but they have a age limit of 2 and older. So today is that day! Then I'm going to come home and make him a coconut cream pudding cake. We have to meet up with Ray Ray's Mom later in the afternoon. Overall, I'm hoping this is a great birthday for Joey.

As we embark on another year in the world of Autism I continue to pray that God sticks with us. We are going to face challenges together as a family, I know with Nick by my side, the help of the therapy team, and our amazing nanny were going to make it with flying colors on to 3 years old! 

   

Support Team

Best Friend-Thoughtful-Kind-Experienced-Emotional-Strong-Unique-Dedicated-Hard working-Motivational-Honest-Loving

These are just some of the words I am using to describe my Mother. Everyone always says they have the worlds best Mom, and to them they probably do. But I know in my heart my Mom tops them all. 

It has taken many years for me to get to this point of bonding with my Mom. Some things just take time. There was a point when I was a teen where I hated and disrespected my parents so much. I look back now and think about how much time I wasted being angry. My childhood definietly left some bumps and bruises, as an adult I know everyone will say that to be true about their own, but back then I was mad. At about 18 years old, I had a deep conversation with my Dad. It was open and free flowing, neither of us was holding back in the honesty department. I was able to ask those questions about my childhood that I have never asked. The answers I got changed my perception of the events that had occurred. It left room for me to let go of the anger and to accept things as they really were. I felt so accomplished and relieved I decided to have a similar conversation with my Mom. My parents were honest with me. Honesty is always the best policy. 

Now I'm 24 years old, I lived a lot of life in my short years, especially as an adult. I look to my Mother for the most significant friendship. We talk to each other on a daily basis, sometimes 3 or 4 times. I can always ask her for advise and guidance, knowing she will be kind and warm, with just enough of a sour pickle sarcasm to spice it up. She and I are very alike when it comes to how we view the world, in a very optimistic light. We always have a good laugh and a tear when needed. If I call she always answers. 

I never dreamed that my relationship with my Mother would be as strong as it is today. In this time of hardship and unknown she is standing by my side to motivate me to be the best Wife, Mother, and friend that I possibly can. I thank her for everything she has done for me, whether it was her parental commitments, or those by choice as a friend. She will always be the first person I call, good, bad or indifferent. 

I love you me-ha!






 

A year in photos

Newborn.

 One Month.

Two months.

 Three months.

Four months.

Five months. 

Six months.

Seven Months.

Eight months.

Nine Months.

Ten months.

Eleven Months.

One Year.

Welcome To Holland

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

 

 

--I read this today. It touched me so deeply. It is exactly how I am feeling. I guess it is true there are other people who know how I feel and know what I'm going through.

Autism is going to be my friend. We will play nice.

It's been a while since I last posted. This family never stops, what can I say? I started this blog to get out some of my Mommy thoughts, about birthing, and the first year. Well life likes to chuck lemons at me and laugh. I am opening my mind, and heart and reaching deep inside to express my true thoughts and feelings. So here goes nothing.

 Joey has been diagnosed with Autism Spectrum Disorder. Whats that mean in english? Autism is a complex developmental disability that causes problems with social interaction and communication.  Symptoms usually start before age three and can cause delays or problems in many different skills that develop from infancy to adulthood. Here's a quick time line,

12 months-Walking by himself, feeding himself, saying Dada, started having once a week temper tantrums
15 months-Shaking head yes or no to simple questions, held book in the correct way, fed himself with fork, began having once a day tantrums
18 months-Common everyday words used Dada, Mama, up, doggy, kitty, no, and yes, Said once then not again words, Grandma, Grandpa, Meatball, Apple, I did it, Stop, Duck, Moo, Vroom, began to only want to play independently
22 months-Stopped using those everyday words except Dada, and Up, Having 1-15 temper tantrums daily, Stopped adding new words to his vocabulary, Social interaction with other children was limited even in a play place

At the 23 month mark Nick and I started talking about all these things we were noticing. We talked about how hard everything was with Joey to complete even the simplest task. That he didn't communicate with us, except for pulling our hands to the kitchen, then just stood there or cried till we played the guessing game and figured out what he wanted. It concerned us that he was regressing in his speech. We made an appointment at his pediatricians office for the following week. His wonderful Doctor did a full urine, and blood work up to see if anything alerted us. Everything came back normal. He then made 3 referrals, one to an audiologist, maybe the kid can't hear us, one to the South King County Early Intervention Program(SKIP), and one to Seattle Children's developmental services. The first appointment was with Skip. The lovely ladies asked a 100 and 1 questions regarding who Joey really is. It was by no surprise to Nick and I, that in fact Joey qualified for services, and that he was on the Autism Spectrum. We are the King and Queen of Google research. We pretty much knew what was going on, we just needed someone else to confirm it. 

I am a loving warm spirited mother. I love my son more than anything. To not have him be able to show affection, or tell me that something hurts, or look me in my eye breaks my heart into a million tiny little pieces. When I was pregnant all I prayed for was a healthy baby. I didn't so much care if he was a he/she, or he had an extra toe, just so long as he was healthy. Learning that Joey has ASD in a way knocks down my belief that he is healthy. Nick has been surprisingly open and his faith has stayed strong through this thus far. He is so strong, reminds me of a Daddy lion.

Next, we headed to the audiologist, though it was already presumed he could hear, he just couldn't make sense of the words. We discovered at the last visit with the pediatrician Joey has a keen sense of people with gloves, who will cause harm. Autistic children already have discomfort when you change up their normalcy, but then you add bright lights, gloves, and probing objects and its a recipe for disaster. Joey knew the moment we walked in to the building that it was not going to be fun. He screamed and cried at the sight of the doctor. Needless to say the hearing test was an epic fail. I won't be rescheduling that one any time soon.

SKIP recommended Nick and I take part in a class called, More than Words, by the Hanen Centre. We took our orientation class last Tuesday night. It is a training program for parents just like us. Their goal is made to help teach the parents how to use our child's preferences, learning styles, and stage of communication to set realistic goals, why our child behaves the was he does, and how we can use everyday activities to build his knowledge and social skills. I am very excited to be part of the 12 week workshop. I really believe everything happens for a reason, this is the first time they are offering the class in our area, and it is paid for by SKIP, and it started exactly a week after we met with SKIP for the first time. If that doesn't say hello? Its meant to be, then I don't know what does.

I had my tonsils out on Thursday. I've been stuck in bed on the internet and reading books. The first book I read was, Jenny McCarthy, Louder than words, and Kim Stagliano, All I can Handle. These two woman are brave, loud, and less than shy when it comes to the Autistic community. They take a stand against blowing off Autism as just another label. They are in belief that Autism has a cure. I have learned a tremendous amount of information from these two books. I shared a tear, or two, an laugh out loud, and now I'm also sharing my story like they have.

Today was yet another big day for little Joey monkey as he had his first meeting with his speech therapist. Her name is Chelsea, and I have a feeling you will be hearing about her often. She is going to come to our home ever Tuesday at 9 am. She is my new BFF. We have decided that our goals are realistic, our treatment plan is in the making, and now all we have to do is practice. Practice makes perfect. Just while she was here, Joey had to show off his skills, he said, baaaa, and up up up. Some days the kid does not utter a single word, in front of the therapist he shows off! Go figure.

I also made Joey an appointment to see a DAN!, or Defeat Autism Now Doctor. I'll put more information in my next post about that experience later.

As for now, I am keeping my tears of sadness to myself. I am keeping my faith strong. I am researching and learning everything I can. I am staying true to my biggest job, as a mother your job is to protect your child from harm in anyway shape of form. Lastly, I am working so much harder at my marriage. Most special needs marriages end in divorce, not this one. I know my son is going to be okay, in fact he will be perfect. 

Stress. A contributing factor.

I started at Lane Bryant Outlet in the month of July, it was now March. I was hired on as an Assistant Manager. My store manager Sherry, and I had always got along great. We worked and played together, too. Sherry was 42, I was 21. She taught me alot about the inside scoop of retail management. Our team was very small, something I wasn't so used to coming from working before that in the Seattle area. You knew everyone and all their business. When I shared the news I was expecting, I received the run of the mill old people questions. Do you want boy or girl? Will you move to a new house? Are you excited? Wait are you even married yet? I never knew people could be so damn nosey. But it made me think about all the answers, What was I going to do? Nick and I had been engaged for a year at this point. I had spent that whole year self planning my wedding. The dress, the flowers, the place, the cake, it was all clipped and in my wedding planner ready to go. I don't however suggest planning a wedding while pregnant to anyone. It added so much more stress than I needed. Sherry has only been married, and later divorced once. She never had any children of her own. She was only ever pregnant for about a half a second. Frankly, she had no idea what I was experiencing. She assumed and she assumed alot that I could keep normal speed. I couldn't. I could barely get out of bed most days. I was so tired.
I recall one tough day when I had opened the store, I got there at 9 am. The closing manager was supposed to be there at 1. It was now 3 pm and I was flying the show solo. My feet hurt, I needed to eat and I was starting to lose my cool with the customers. I called Sherry, and explained what was going on and in typical Sherry fashion, she told me suck it up. It was her day off. I ended up closing the store at 9 and leaving at 930. I was pregnant for Heaven Sakes! She could of careless. I was so mad, hurt and upset. I'm pretty such my blood was boiling. To top it off, I had to open the store again at 9 am. I wanted to quit. If it was any other employee I could understand making them stay, but me, seriously come on.
Sherry and the Lane Bryant ladies and myself went through many stressful days at that store. I did however learn alot of good birthing information from the crazy mom, to, mom-to-be stories that everyone so desperately needed to share with me. Why is it that because your showing a little bump woman feel they can tell you all the gnarly details? Do they forget the hormone ratio while being pregnant? I think so.
Needless to say those last few months were tough.

Is this really what its like?

Feburary
The first 3 months of the pregnancy were like a cake walk compared to what was about to come. I was tired and cranky, but no morning sickness. I was a little bummed when I wasn't having strange food cravings. I always thought that would be the fun part, eating weird stuff whenever you wanted. No late night runs to the store, no making Nick run to fast food places, what was the fun in this if I didn't get to have some crazy food.  I did have a particular liking to Jimmy Dean crossiant breakfast sandwiches, just never at 2am.
The smell of some foods can send a girl out the door so darn fast. I remember on one of the many nights we spent at my parents house for dinner, my Mom made cheeseburger mac hamburger helper. I almost vomited on the table. Its been 2 years and I still can not stand the smell of any kind of hamburger helper.

Around mid-Feburary we scheduled our first major appointment with the doctor. Nick took the day off work, we were going to hear the hearbeat of our little baby. Being pregnant causes this horrible thing called, Preggy Brain. I knew what time the appointment was, and I had for weeks. We get to the office and the bitch of a receptionist begins to tell me how I am 10 minutes late and they need to reschedule. I cried. Right there, Full blown temper tantrum. It was a big day to me. It somehow was supposed to signifiy that Yes, I really did have another human being inside of me. Never have I been overcome by emotion in such a way like that. Everything that day, Friday Feburary 13, yes I rememebr the exact date, went so terribly wrong for me. I don't think I had ever cried so much as I had on that day. Feeling emotional and therefore powerless to the extent of the emotion, is something I hated. I felt controlled by what seemed to be some outside or for that matter inside, force.
The next Monday I changed doctors. Doctor Kort was one only obgyn approved on my insurance, and his wife was the only midwife. She couldn't get me in to be seen, so it was a quick and easy choice. I remember laying there feeling huge, though I had only actually lost 10 pounds at this point not even gained any, and when the Doc came in I knew he was going to get me through that process. I felt comfortable with him and knew I had made the right decision to change doctors. We heard Joey's heartbeat for the first time. I cried only a little after leaving the office. That day sealed in the future. There was no going back from here.