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TGIF (Thank God It’s February)

1 Feb

So, January 2012 was the month from hell.

Oh, Hi there. How are you?

I haven’t blogged in quite awhile and my next post is an attempt to explain why the hell not.

To attempt to make a long story short, Jude has been having some issues that we have been noticing since he was about 1.5 years old. At the forefront of them is his lack of communication/lack of progress when it comes to language & communication. Its very common for people to brush off these kinds of things and throw out things such as “Boys will be Boys!” and “My cousin didn’t talk until she was 7 and shes a GENIUS!” So we went with that for awhile. Ruby was born and we thought maybe his regression was OUR FAULT. Because, good parents blame themselves, not their children.

In addition to Jude’s language delay, we have noticed that he seems to be a very anxious kid. Meaning, he has a lot of coping mechanisms for “anxiety”. We noticed all of this progressively getting worse, in addition to prolonged and sometimes self-destructive tantrums. One day, after an out of the ordinary accelerated tantrum, Michael sat me down and basically had an intervention with me.

It seems like you are always making an excuse for Jude’s behavior.

Ouch.

The following day, we had an appointment with Jude’s pediatrician to have his ears checked for a cold, so we decided to go ahead and speak with her about some of our concerns. We didn’t really have to convince her that something wasn’t right, when Jude through another scary tantrum in the Doctors Office that day.

She recommended we get in touch with an organization called Alta Regional and set up an appointment with the Developmental Pediatrician and a formal Hearing test with the Audiologist (they always check a child’s hearing first when there is any kind of language delay).

Alta Regional is a God send in every way. They immediately understood what we were going through and got the process rolling for us. First, Jude had an evaluation with an Occupational Therapist.

In a nutshell, the OT believes there is something wrong with Jude’s nervous system. To a normal person, things such as bright lights, loud noise, itchy sweaters, etc. cause annoyance. But to Jude, it causes extreme anxiety. Reality and how Jude’s brain and body interpret the world around him are two different things. For instance, something as simple as having Jude change out of his clothes and get into the shower can be extremely anxiety inducing and stressful, despite whether or not he actually loves being in the bath (which he does). So what the Occupational Therapy is going to help do is help Jude deal with his anxiety and hopefully help his brain and body learn how to regulate the anxiety. For example, at Therapy, there was a bucket of balls. Because seeing that many balls at once is so overwhelming to Jude’s brain, his reaction is to dump the bucket of balls and try to roll around in the balls instead of making the choice of picking one ball to play with and be satisfied with that.

Because of the issues with his nervous system, things like depth perception, height, weight, texture are being misinterpreted by Jude’s brain. For example, Jude loves to swing and enjoys swinging very high. But if I pick him up and set him on the kitchen counter, he shakes with fear. Because he is unable to regulate or understand how high he actually is.

Part of the reason Jude enjoys being so rough or maybe even seems to “enjoy” small amounts of pain is because it is a physical release for his anxiety. In the same way that sometimes when we are mad we feel like punching a wall. He also doesn’t have the capacity to regulate how rough he is being so that is why he may even “hug too hard” or express even joy in a “hard” way.

Now, in terms of his lack of speech, the therapist said the reason he is so far behind is because of all this going on in Jude’s brain constantly, he isn’t in the right frame of mind to learn or be taught new things. His brain is too busy thinking about all the other things around him he sees, smells, hears.

The OT recommended that Jude is submerged in intense Occupational and Speech therapy. Especially because Jude can be of danger to himself until he learns how to better monitor his senses and anxiety.

A lot to take in. Que panic attacks, vomiting and little sleeping.

The following day was his assessment with the Speech Therapist.

The ST came to our house, which is where his Speech Therapy will take place weekly. The ST seems super knowledgeable and again I like she totally understood Jude and where he is struggling instantly. She agreed with everything the OT talked to us about the day before, in terms of Jude’s sensory issues and his need to get those things sorted first and foremost. Mostly we just talked about Jude and she observed and played with him. All of his therapy will be “play lead” because that is the easiest way for him to continue being interested. The OT & ST both agreed that “playing hard” with Jude is what feels good to him and will help relieve a lot of the anxiety that he has.

We are going to be starting adding more Pro-Biotics (powered) and DHA Fish Oil (liquid) to Jude’s diet as the ST recommended. She reccomends that we focus on teaching Jude words while playing with him in association to a movement. For instance, simply jumping/hopping with him and saying “Jump, jump, jump!” or tossing him into the air and saying “Up”. He is much more likely to participate when physicality is involved. Another tip she has given us to help him with his anxiety is to tell Jude our plans before we attempt them, for instance when he wakes up in the morning say, “Okay Jude, first we are going to change your diaper, then eat breakfast then we will go outside and kick the ball”. Or if we will be taking him out of the house, try to prepare him for what the environment will like, as in “Jude, today we will be going to the play area at the mall. We are going to see lots of kids and bright lights and loud noises.”

Most importantly we need to focus on making all kinds of silly sounds with him, like “Vroooooom” when playing cars or making animal noises with him. This will help him see the importance and fun involved with communication. Right now he doesn’t really understand the need for it, so we need to make it more appealing to him.

She also recommended using songs like “Wheels on the bus” and “Itsy Bitsy” to do with Jude, any songs that have “signing” or physicality associated with them.

I asked her what “term” might be used to describe the struggles Jude is having and she said, while she is not the person who can officially diagnose these things, some of the terms we might hear on the evaluations would be Sensory Processing Disorder, but she acknowledged that she can tell how smart Jude is and how much Jude wants to be intimate and interact with others, which is not typical of a child with Autism, so this Early Intervention is going to help him extremely. Also it’s important to add that just because he is dealing with this now, does not mean that he will be dealing with it forever.

So the following two weeks consisted of more panic attacks, crying, hugging and worrying by Michael and our families. We waited for the appointment with the Developmental Pediatrician like it was Christmas morning. If, by that I mean, Christmas morning consisted of someone punching you in the face repeatedly.

Well that day was yesterday. I woke up at 6am after having a bottle of Sparkling Wine before bed like it was my job. Michael said he was impressed with my ability to kill a bottle of wine so fast as he hadn’t seen me do that in a while.

We got ready and my Mom & Everitt came to watch Ruby while we went to the appointment. Well, first I threw up twice, then we left.

Once arriving at the hospital I began to feel my feet getting very heavy and my heart began to beat so fast I started getting paranoid that the people in the elevator could hear it.

Michael let Jude run laps around the lobby while we waited for 20 minutes (felt like 200) and eventually we were called back by the Developmental Pediatrician and his Nurse. We were taken into a room that reminded me of a SVU scene and they began evaluating Jude. Asking him to do certain puzzles, tasks, speak, etc. Then they interviewed us, reviewed the other Evaluations, etc.

After awhile the DP said, “Well, Jude shows no signs of Autism, Retardation, Cerebral Palsy, Deafness or any other genetic disorder that we can see.”

Try to remember the happiest feeling you’ve ever experienced.

The multiply that time about 100 and that is how Michael and I felt.

Not that we really thought or worried (okay maybe we did) that those things would be wrong with Jude, but to have someone who knows what he is talking about calm that fear inside of us? Well, its the best thing I’ve ever heard.

So we went on to discuss about Jude’s therapy with Alta and the Doctor agreed that is the best thing we can do for Jude at this time. He said Jude does have a 40% language delay, but it is more common than people think. 1 in 10 children have a language delay. He couldn’t (or didn’t want to) really discuss Jude’s nervous system issues with us, because, that is not something that Kaiser considers to even be a disorder (because then they would have to actually treat him, god forbid). But he did say that children that receive treatment for Language Delay before the age of 4 are likely to not only be caught up to their peers by the time they enter Kindergarten, but can often surpass their peers as well.

We thanked him for his time and we were on our way. Jude had his hearing test yesterday afternoon and although it was painful (lots of screaming) he passed with flying colors. The Audiologist said she actually thinks Jude has immaculate/accelerated hearing ability for his age.

So, where do we go from here? Well, I got an email from Alta as soon as we left the DP letting us know that Jude is approved for OT & ST!!!!! We will be getting him enrolled this Friday and hopefully that means that he will be able to start his Therapy asap!!!!!!!!

Michael said he has never went from so sad to so happy in one day before. I couldn’t agree more.

Why are we sharing this information with all of you? Well, because its our life. And truthfully the only people that read this blog are people who love us and are there to support us every step of the way. Now that we are into the GOOD part of the process, I can’t wait to share all of Jude’s PROGRESS and SUCCESSES with you.

To all of our close friends and family, we cannot thank you for all of your thoughts, prayers & support over this past month. I can’t tell you how much it has meant to me. I’ve never had to walk through something so scary and stressful in my life. Now I feel such a renewed sense of hope and joy for my little baby.

Jude is the sweetest, cutest, most loveable, fun, thoughtful, loving, generous little boy in the whole world. He makes our lives worth living in every way. We are so blessed to be Jude’s parents. Thank you God for trusting us to care for this little angel. He means more to us that words can truthfully say. So, I’ll stop talking now.

If you made it to the end, you deserve a cookie.

Life is Incredible Sometimes {Warning: Heartfelt}

15 Nov

Today Michael and I (anxiously) ventured out to the grocery store with both kids. It went surprisingly well (yay progress).

When we reached the checkout, I was holding Ruby facing over my left shoulder. A middle aged gentleman came up behind us and was instantly enamored with her. They were smiling back and forth at each other for several minutes. The man told me how adorable she was and how beautiful her eyes were (how nice to hear something aside “Wow….she’s really small.”). They continued smiling at each other and it seemed like Ruby was really putting on a smile show for him.

After a few more minutes, the man asked me what her name was.

Ruby.” I replied.

He stopped for a second and with tears welling up in his eyes he said, “Seriously?!” I shook my head and wondered what he meant.

He said, “Well you might think this is crazy but that was my Mother’s name.”  and continued, “Today was her birthday.”

I could tell he was a little taken aback with emotion and I replied, “Well, she must be looking out for you today!”

Ruby continued smiling and began to coo at him.

I said, “Its not a very common name, you know?” He shook his head and continued smiling with her with tears in his eyes.

Another minute of Ruby hamming it up continued (can you tell our cashier was old?) and I curiously asked him, “What was her middle name?”

Mae.” he said.

I felt chills on the back of my neck.

Now I said, “Seriously?!” He looked at me curiously.

I said, “I swear to God, her middle name is Mae. Ruby Mae Reese”.

He began to cry.

I began to cry.

We just stared at Ruby, who was still smiling and cooing. Ruby reached her hand toward him and he took a step closer to her. A cashier at the next aisle over asked the man if he wanted to be checked out.

He said, “No, I think I’ll stay with Ruby Mae a little longer.”

Perfection

18 May

Our child owns us.

19 Apr

Its true. I’m sure pregnancy hormones are not helping, but in the last month both Michael & I have become completely overwhelmed. It seems like no matter what/how we try to take Jude with us places, it ends up turning into a giant melt down of some kind. Today we needed to go grocery shopping for the week. We also needed our oil changed, so we went to Wal Mart where we could do both. So we began our shopping and first we tried letting Jude walk around on his leash.

YES MY CHILD HAS A LEASH.

Its one of those teddy bear backpack ones that are supposed to help hide the fact that you are PUTTING YOUR CHILD ON A LEASH.

This is the first thing I always think of (warning, explicit language):

I know, I know. And for the record? I was one of those people who used to laugh and make fun of people who put their children on leashes. So let the fact that Michael & I actually went and bought one of those ridiculous things tell you how DESPERATE we truly are. Also for the damn record? Young-childless-couple in the Garden Department, a giant EFF YOU for staring at us like that. Topped with a super-giant-bitter I HOPE YOU’RE EFFING  GET-PREGNANT-ON-BIRTH-CONTROL-KIND-OF FERTILE!!!

So, we tried the leash. That worked for…..3.7 seconds. Fit begins. Throwing self on ground. We try putting Jude into the cart. That lasts for about…2 minutes. Punching, kicking, screaming and fit throwing continues.

So then we try this:

Which was working alright until we figured out that Budgie was CHEWING through all the boxes and plastic items. So, I tried distracting him with a fruit cereal bar, which lasted about…39.3 seconds. He decided it was time to take all of the items in the cart, throw them as hard as he could and scream as loud as he could. This was when Michael and I both began sweating. Running from aisle to aisle trying to shop as quickly as possible.

I even tried putting a youtube video of Shrek on my iphone and handing it to him in the cart. Which gave us 2 minutes of calm. Praise you, Dream Works. Praise you.

We were coming towards the end of our speedy-shopping-spree and reach our last destination, the produce aisle. Jude is very unhappy and kicking his legs about so I tell Michael, “You just grab everything really fast and I will chase Jude”. He runs off and I take Jude out of the cart (still screaming) and let him run around, sweating my 7-months-pregnant ass off. Which is great for about….45 seconds until Jude decides to run up to all the reachable fruit and try to throw in on the ground.

I scoop him up and try to take him to another area. Which doesn’t work because he is screaming so loudly and jolting his body so harshly at this point that I am actually afraid of my child and I just stand in the middle of the produce department, helpless. I begin crying like a little baby. The old ladies who were only moments before staring at me as if I were the anti-Christ are now looking at me with pity (not sure which is worse). Michael turns from the lettuce to see me looking more pathetic than ever and rushes over. He takes Jude from my arms, tells me the 3 items we need that are left on our list, and carries Jude over to the toy section to distract him while I finish our shopping and check out.

I am so humiliated and embarrassed at this point, that I am not only crying but also look like I just ran a marathon because I am covered in sweat.

If you don’t already know me well enough to know this, I love this child with my entire being. Like, I can’t even begin to tell you how much I love Jude because there are not enough human emotions to even begin to describe what I feel for him. But in this moment at the grocery store, I began to realize something very important, my life is different now. In so many millions of ways for the BEST BEST BEST but also in some ways, like today, in a very inconvenient way.

Realizing this, on the way home I say, “We just can’t go grocery shopping together anymore” to Michael. Which makes both of us a little sad since it is/was one of our favorite things to do together (before having children). That might sound really weird, but it was one of “our things”. It just NEEDS to be put on hold right now. While that is perfectly OKAY, it still kind of stings a bit. And Honey, when you asked me on the way home what I wanted for lunch and I replied, “One of those bong-sized margaritas from Las Vegas and a Xanex.” I was completely serious, but thank you for laughing at me anyways.

I don’t know if you currently have small children, but if you do, then you are most likely nodding your head in agreement with this (unless you have some super freaky 1.5-2 year old that actually enjoys sitting in a grocery cart for 45 minutes). But if you are pregnant right now reading this, I am sorry and just keep lying to yourself about how “your kids will be different” like we did. Because, honestly the denial is so nice while it lasts.It was better than bong-sized margaritas. And if you are too old to remember what this feels like and you somehow only remember that your kids were NEVER like this and ALWAYS listened and NEVER screamed in the grocery store and…and…and… for this reason you take great pleasure in staring us down in the store or judging me right now then FINE. JUDGE. AWAY. Because I am a damn good Mom. I have a lot to learn and I don’t need your judgment, I need your support.

So to the one, sincere, nice, loving, older lady who walked by me in the produce section (weeping like a little child) and patted me on the back (as if to say, “Oh honey, I’ve been there.”) THANK YOU. Thank you so much.

Happy Birthday Bryan

15 Apr

You are truly missed.

Thoughts & prayers to all of your family & friends who love and miss you everyday.

Congrats Magda!

12 Apr

The winner of Lullabies for Getty has been picked!

Congrats Magda!! Check your e-mail lady 🙂

Not the winner?

Buy the album now and help fight SMA!!!!

Thank you,

19 Mar

I want to give a sincere THANK YOU to everyone who took the time to leave comments, message & email me about the blog I posted yesterday. Hearing your stories and words of encouragement mean so much to me. I found myself shocked at some of the stories you had to tell me, the truths you have had to face in your life. I also got a few messages from people apologizing for not doing more when I was going through that rough time, and please believe me it is SO UNNECESSARY. The point of the blog was not to make anyone feel sorry for me, it was to share that shitty things happen, tough times happen, but we can overcome them. I’ve met so many people with stories of survival so much beyond anything I have experienced. Hearing those stories, while heartbreaking, are also purposeful in that they help you to realize that you are blessed more than you thought.

Today, my life is so full of love. I have a life full or happiness and joy. Relationships with people I never thought I would have.

Again, thank you so much to listening to me ramble and for your thoughtful and loving responses. You guys are freaking awesome!

The Japan Earthquake: How to Help

15 Mar

031411_helpjapan5.jpgI found this information via OhdeedOh and wanted to re-post in hopes to spread the word.

________________________________________________________________

The catastrophic devastation left in the wake of the Tohoku earthquake and tsunami in Japan has left thousands in dire need of help for the most basic of necessities. We know many of you out there want to offer aid in some shape or form, but are perhaps overwhelmed by the wide variety of options available online and offline. We’ve gathered a list of relief agencies and other donation projects with the goal of getting aid into the hands of those who most need it, letting the people of Japan know our thoughts are with them. Join Apartment Therapy today in an act of charity and hope…

Technology and social networking companies such as Google, Apple, Facebook and Twitter are all offering users a ways to make donations with just a few mouse clicks.

031411redcrossitunes.jpgDonate via iTunes: Apple has setup an American Red Cross donation system for iTunes users; donations of $5-$200 can be via iTunes. Rest assured 100% of donations made will go directly to the Red Cross. Please note, the Red Cross will use any excess funds donated for a specific disaster to “prepare for and serve victims of other disasters.”

Find Missing Friends/Family: Google put their vast information database resources to create a person finder service was created as part of their Crisis Response page, allowing survivors and their friends and family to reach one another. The site is available in both English and Japanese and you can make a direction donation to the Japanese Red Cross Society from the page.
The Twitter blog listed a variety of special earthquake hashtags in Japanese and English to aid in mobile communications at a time when computer and phone access might be limited:

Tweet with special earthquake hashtags in Japanese
When tweeting, consider using the following hashtags to help identify your tweet.
#Jishin: General earthquake information
#J_j_helpme: Requests for rescue or other aid
#Hinan: Evacuation information
#Anpi: Confirmation of safety of individuals, places, etc.
#311care: Medical information for victims

Search using special earthquake hashtags in Japanese
The search queries below have operators that will help filter out noise and provide clearer results. You can use these by clicking on the hashtags on any PC or smartphone.
General earthquake information: #Jishin
Requests for rescue or other aid: #J_j_helpme
Evacuation information: #Hinan
Confirmation of safety of individuals, places, etc.: #Anpi
Medical information for victims: #311care

Hashtags in English
#JPQuake
#prayforjapan
#japan
#TSUNAMI
#jishin_e

Online retailer Alibaba.com has setup a Donate Disaster Relief Products page, where all AliExpress purchases made for disaster relief and emergency items are sent at cost, shipped to Japan free of charge. Emergency items like sleeping bags, tents, gloves, clothing, masks and LED flashlights are available; just be sure to specify “Japan Earthquake Relief” as the shipping address at checkout.

031411WKstudio.jpgArtist and designers like W+K Studio are creating and selling wares like the Help Japan Poster (above) with the specific goal of raising funds through the sale of their work; 100% of funds are donated to Japanese earthquake and tsunami relief efforts (buyers can also choose how much they’d like to donate).

Online Donations for Relief Agencies:
Japan Society Earthquake Relief Fund: Japan Society has partnered with several Japanese and American non-profits working on the frontlines of disaster relief and recovery. 100% of tax-deductible contributions will go to organization(s) that directly help victims recover from the devastating effects of the earthquake and tsunamis that struck Japan.

The American Red Cross: Those who want to help can go to Red Cross site and donate to Japan Earthquake and Pacific Tsunami. People can also text REDCROSS to 90999 to make a $10 donation to help those affected by this disaster.

Oxfam: Oxfam is working to identify partners to assist people who are suffering in the Pacific tsunami disaster and whose voices may not otherwise be heard, targeting hard to reach areas affected by the disaster.

UNICEF: UNICEF’s focus is providing aid and care to the children affected by the Japanese earthquake and tsunami. UNICEF has prepositioned staff and emergency supplies throughout the region to assist vulnerable children and families should the need arise, but your aid is essential.

Doctors Without Borders: The Doctors Without Borders has already been dispatched to provide mobile medical aid in Miyagi Prefecture, with hopes of finding and treating survivors. Please note, at this point, the organization is drawing on unrestricted donations given to MSF to fund efforts, and are not accepting donations specifically earmarked for the recovery efforts in Japan.

Save the Children: Save the Children has launched an appeal for $5 million to help children affected by Japan’s devastating earthquake and tsunami, specifically with the goals of providing and setting up child-friendly spaces to provide a protective environment where children can spend time with other children and trained teachers.

The Salvation Army: The Salvation Army in Japan immediately dispersed teams following the disaster to the most severely affected areas where they are distributing basic necessities to survivors. These teams will also assess the damage to discern the next steps in their relief efforts. With 200 officers, 3,000 members and nearly 1,000 employees already in Japan, your donation will likely be put to work immediately. Mobile users can also text JAPAN or QUAKE to 80888 to donate $10.

If you’re unsure whether to donate to an organization, we recommend checking their standing and credentials via charity research organizations, such as GiveWell and Charity Navigator. File any fraud complaints with the Internet Crime Complaint Center. Known as IC3, the Center is a partnership of the FBI, National White Collar Crime Center and Bureau of Justice Assistance. Also, call the National Center for Disaster Fraud at 1-866-720-5721 to report the fraud.
[“Help Japan” poster design by James White; sold out, with all proceeds being sent for disaster relief]

View original post at OhdeedOh

17 Dec

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25 Aug

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Makeup Artistry by Tiffany Reese (Fancy Face) from Fancy Face on Vimeo.