Thursday, December 6, 2012

Sleep Study at PCH

We finally got around to getting the sleep study for recker done and over with. Ive kind of been putting it off for the past year because i honestly didn't think recker would be able to handle it because of his sensory issues and i just couldn't handle any more disappointment. But we did it and it was a success! I kept him up all day and we went in around 7pm and stayed until around 4am. Recker didn't last the whole time, we ended up leaving 4 hours early, but they said they thought they had enough data to review and diagnose and said we could leave. It was so stressful and overwhelming but I've come to learn that i am a lot stronger than i give myself credit, mostly because i HAVE to be. If it were up to me i would lay in bed and feel sorry for myself some days, but when you have little ones who depend on you you can't do that, and what a blessing Recker is and how busy he keeps me, it helps me keep my mind off of the bad and negative thoughts that slip in every once and awhile. Anyways we hope to get the results from the tests/EEG within the month! 


(last meal before going to the hospital. poor kid had no clue what was coming!)

  

 

I don't even know how many cords were hooked up to his head, i didn't get a chance to get a picture with all of them on there, but there were over 50 (all of them you see in the two pictures above hanging on the racks and walls). They stuck them to his head with this vaseline like glue which was such a pain to get out of his hair later! Then i had to help him fall asleep, we turned the lights off and they monitored him from another room with that camera in one of the pictures above (round black camera hooked to the computer). He laid in the hospital like bed and i "slept" in a bed next to him (the one he is sitting in watching the iPad). They monitored his breathing, how much oxygen he was or wasn't getting, his leg and arm movements, brain activity and a ton of other things. They are wanting to rule out sleep apnea which his doctors think he has, as well as a slew of other sleep disorders. Hopefully we are able to rule everything out! Anyways we were so blessed to have such amazing staff working with us that night, it definitely wouldn't have gone as smoothly as it did without them! THANK YOU PCH!!

Monday, October 22, 2012

I hope everyone had the chance to watch Comedy Central's 4th annual Night of Too Many Stars where they raised money for Autism! (if you missed it, it will be on again this Wednesday...record it, its so worth it). Anyways i just had to share this amazing video of Katy Perry doing a duet with Jodi DiPiazza, a young girl with Autism. It brought me to embarassing overly dramatic sobs, but its not like its that hard these days (pregnancy & hormones? haha)....



Sunday, October 21, 2012



Can you imagine hearing the words "your child has autism"? In a split second, life - as you know it - has changed. For a different family every 20 minutes, tomorrow will never be the same.

This is our son Recker Jay Roussel. He was diagnosed with Autism Spectrum Disorder last year when he was 16 months old. To me he was still my baby, it has definitely rocked our family but made us stronger. He LOVES to scrape the filling out of Oreos! He could roll around in the dirt and play outside all day long! The swing is probably his favorite place on earth. He has the most infectious laugh and is the light of our lives! He loves his family, and his Grandparents, Aunts and Uncles are his absolute best friends. He loves everyone and he is so easy to love back. 

The parts of his day most don't know about are his Therapies and Doctors visits. He is in therapy almost daily and in different specialist doctors offices every couple weeks. He is non-verbal and has no way of communicating with us his needs and wants. This makes life for him extremely difficult and exhausting for everyone. He like many with ASD have Sensory Processing Disorder which causes a whole other slew of difficulties for his daily life. Please help Recker by donating ANY amount you are able to. Every dollar helps. 

By participating in this event, you are helping to change the future for all who struggle with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent and treat it, and ultimately a cure so no family ever hears those words again. Until then, we walk to find answers and raise awareness about the devastating toll that autism has had on families like ours.

I need you to help make tomorrow be about little league, school lunches and first words rather than therapy, doctor appointments and despair. Together, we will find the missing pieces.




Meltdowns at Target....

So Friday night Jeremy went to the ASU vs. OSU game and i decided to have a date night with Recker. Recker played outside with his friends for awhile and when it was time to go (like always) he was NOT having it and was really upset. So contrary to what i hate doing, i bribed him with Target popcorn, which is his FAVORITE! He still beat the crap out of me while i was wrestling him into his carseat, screamed the whole way until we pulled into the Target parking lot and he finally realized i was being serious about the popcorn. Well i kept telling him over and over and explaining to him that if he calmed down we were going to go inside to get it. He finally calmed down with the promise of his beloved popcorn. When we walked in, i saw there wasn't any popcorn made in the machine, but i did not feel bad asking them (it was like an hour away from closing time) to make more, it was honestly what was going to get us through the rest of the night. 

Well when i ordered the popcorn, the sweet 16 year old girl responded with, 

"Oh sorry we ran out of popcorn yesterday and won't get anymore until tomorrow," 
"Wait what? You don't have popcorn?" (in a shaky trying not to cry voice)
"No not until tomorrow, can i get you anything else?"
-Insert me with tears rolling down my face choking back complete sobbing....
"Um are you ok Ma'm?"
-Sniff..."Um no, my son...sniff...he won't understand...sniff...he has Autism and i promised....sniff....i  promised him popcorn....what do i do?!!....sniff..." 

By this point recker was getting antsy because it never takes this long to get a simple bag of popcorn. The loud speaker came on with someone announcing something unrelated, the multiple beeps from the checkout counters directly behind us, and no popcorn resulted in my sweet boy's meltdown curled up rocking back and forth while using my hands to cover his ears. We were a mess. It was a complete nightmare. Finally after stepping aside, calming him (and myself) down and trying my best to explain to my non verbal/non communicative son that he was actually NOT going to get what i had been promising him all night, we settled on cookies the size of our faces and icees. We worked out our emotions and disappointments through retail therapy and stuffing our faces with chipotle afterwards (yes right after we had downed the biggest cookies of my life and giant frozen sugar comas). 

I normally do NOT respond this way to something so small, but I'm blaming it on my high hormones and emotions from this pregnancy! And the fact that Jeremy and I had been talking about how hard it is still to this day to deal with Recker's Diagnosis. Sometimes i feel like so many eyes are on me and relying on me to be the strong one. So many people see me as the "Rock" when it comes to Recker's Autism, but that couldn't be farther from the truth. Every moment of the day i am consumed with Autism, Sensory Processing, and all of Recker's other issues. It never goes away. Its not a bad thing, i would rather be a parent who lives with the reality of what our lives are and will be, than one who is in denial and can not accept it. 

The truth is, our last appointment with Dr. Blitz has honestly changed our relationship with Recker and how we view Recker's diagnosis. She flat out told us that i was NOT giving Recker enough credit. She told us something that has changed everything for us, she told us that yes he does understand WAAAAAY more than we know, and that we need to start communicating with him like he understands. Since that day, we have been speaking to him like a typical almost 3 year old and doing our best to thoroughly explain everything we are going to do and why and i can not tell you how life changing it has been. We are all happier. Recker is happier. He is a different child. We have fewer meltdowns when we tell him when and where we are going, what we are doing, etc....Dr. Blitz will never know how much of a blessing she is to our family. 



{Yes, to my husbands HORROR, i took my son out in public when he was this filthy. Don't judge i know some of you probably most have had days where you just don't care anymore...come tell me you have!....ps if you look close you can see that most of all the marks on his legs are bruises, scratches and scabs, not dirt. They look close the the same even after a long bath}

Saturday, October 13, 2012

Flight Risk...

Recently we had a visit with Recker's Developmental Pediatrician Dr. Robin Blitz (we see her quarterly, she diagnosed him). I know I've said it before and i know i'll say it again, she is the best thing thats happened to us (regarding Recker's ASD). Because she is so completely thorough and she listens to every fear, question and concern, our appointments last 1 1/2 to 2 hours average. Well this last visit Jeremy was able to be there and help me out with Recker and just the emotional support alone was worth him being there. I get anxiety and stress about these appointments for weeks prior to it, and like I've mentioned before the second i hit that parking garage all those emotions from "D-DAY" come flooding back in and are so overwhelming. Jeremy is so supportive and understanding! Well during this visit we covered a HUGE list of our worries, concerns, problems and fears...

1. Should Recker be in the amanecer program or a self contained SPICE (Autism) preschool class?
2. We can't get him out of our bed! (<-------YES. SERIOUSLY)
3. Still no speech/language. Concerns about his Regression.
4. Recent/New Onset Aggressiveness towards others. 
5. Comprehension. How much of what we and others say does he actually understand?
6. I have a constant feeling of urgency, like i am losing precious time helping him progress.
7. Does she know of any therapists/counselors who work w/families who have a child with a disability.
8. Darting/Running. I can not take him anywhere without carrying him. 
9. Are his negative behaviors due to his age or his Autism?
10. ADD/ADHD causing him not progress with gaining speech. 
11. Sensory Processing Disorder- His seeking skin on skin obsession.
12. Potty Training.
13. Hearing/Baerh Test.
14. Severe separation anxiety.
15. His Tracheomalacia.
16. Not understanding limits. ie. "you can only have ONE popsicle" leading to hour long meltdowns.
17. Oxytocin- nasal vs. nebulizer.
18. Sleep Study and Gastro Problems.
19. His inability to sense or understand danger.
20. How will he handle the new baby?


Well she covered almost all of these before we even had to ask. One of her biggest concerns, and has been since he was diagnosed, is Recker being a "flight risk." She asked me if he was still "wandering" and a "flight risk" i told her yes and her next question was " have you received a handicap plate or placard yet?" i told her no and without a second thought or hesitation she filled out and signed the paperwork and told me to go get one ASAP. So i have mixed feelings about this, mostly i am all for it because carrying 40 lb recker from the back of a packed parking lot while he is thrashing because he wants down is getting a little hard, and will just become completely impossible once i have the baby. My only reservation is because someone recently said something to me when i mentioned we were getting a handicap placard, "Wow now you're really milking it." I tried to explain to them that its getting harder and harder the bigger he gets and the bigger i get (from this pregnancy), they replied with "well don't you want to get buff arms?" I was so hurt but mostly furious! Everyone please think twice before being so quick to judge. 



Anyways i just thought i would give you some statistics, facts and information on how dangerous and prevalent "Wandering, Elopement, Bolting and Fleeing" are in children and adults with Autism. 

Similar to wandering* behaviors in seniors with dementia or Alzheimer’s, children and adults with an Autism Spectrum Disorder (ASD) are prone to wandering away from a safe environment. Typically they will leave to get to something of interest, such as water, the park, or train tracks -- or to get away from something, such as loud noises, commotion, or bright lights.

Dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.
Because children with autism are challenged in areas of language and cognitive function, it can be difficult to teach them about dangers and ways to stay safe.


  • Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Children with ASD are eight times more likely to elope than their typically-developing siblings/peers
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent. 

This is such an issue in the Autism community that there are actually tracking/locating devices parents are able to purchase (only legal for children with disabilities) for their children....


Visit http://www.awaare.org/index.htm to learn more!



Sunday, October 7, 2012

Breaking through Denial...

Jeremy has been wanting a baby for such a long time and me, well i didn't. But we prayed about it and felt it was the right time to try, even though i still had certain reservations and concerns, we knew it was the "right time." Fortunately we don't have trouble in the getting pregnant area and found out we are EXPECTING in FEB 2013!! We were/are both so excited, but there has been this dark cloud hanging over in the back of my mind. One that i have been trying to stay in denial about and just pretend is not there. I haven't been ready to face it or think about it, honestly im still not, but it slips closer and closer daily. As i try to find the strength to type these words, i get that lump in my throat, the one that you get when you're trying not to start sobbing. The words and thoughts that have haunted me DAILY since "D-Day," ....will the rest of my babies be diagnosed with ASD also? Will i spend the rest of my life surrounded my by children and never be blessed to hear their voices? Will the rest of my children have to struggle like Recker has/does? This is my reality. I know i need to just trust in the lord and i know that i will not be given anything that i can not handle. But how do i do that when i still am trying to heal from Recker's diagnosis? It is harder and harder everyday, as his peers and friends grow and develop new skills, knowledge and talents, its devastating to see your child at a stand still, with no improvements and developmental growth. How do i not worry about my future children? How am i not supposed to be absolutely terrified about this? I have talked to several other moms with children on the spectrum and luckily I've found that i am not alone in feeling this way. That helps. I just keep trying to remember how absolutely blessed we are to even have Recker in our lives and how many blessings he brings to our life. I just worry. Its a mothers nature to worry right? I just can't get that sick feeling out of my stomach and the back of my mind. I have such amazing family and friends who are so supportive but unless you actually are living in our position its impossible to understand this fear. Prayers, prayers are what are keeping my head up everyday. Faith and my knowledge in the gospel, knowing that i am not alone in this, even on those days when it seems unbearable and like you are desperately alone....FAITH.



Thursday, June 14, 2012

June is a NEW month!

So May was the craziest month we've ever had! Weddings, showers, parties, packing...i could go on! Well June is here and with that comes vacations and...PRESCHOOL EVALS! I can not tell you how ecstatic and terrified I feel. Recker NEEDS the social interaction that will come with preschool (since we all know he can not last longer than 10 minutes before being kicked out of sunday school nursery at church), but I can not help but be just completely nervous and worried. First of all, HOW DO I HAVE A PRESCHOOLER? Seriously?! We go for our evaluation on June 21 and i just am sick wondering how it will go. I do not want to be forced to put him into a SPICE preschool (Gilbert Public Schools lingo for self contained Autism classroom). I want him in an Amanecer preschool, where half the class is typical functioning children and the other half are children with certain needs. Anyways this is where my mind has been the last couple weeks.

 Luckily we were able to head down to one of our places in Rocky Point, Mexico last minute this past weekend. It was so nice to relax and swim in the ocean and soak up some much needed sun. W went down with the newlyweds (Blake & Chloe) and Kaitlyn came down with us also because Brian is visiting family in Utah. I can't tell you how nice it is to be able to hop in the car and drive a few hours and be laying on the beach (which I'm really not a fan of, I've got my own sensory issues haha) and swimming in the WARM ocean. Weekend trips are perfect amount of time to get away and not go stir crazy being on vacation with a 2 year old. We absolutely LOVE mexico and will continue going forever! 




Tuesday, May 8, 2012

Good News Due to Bad News

So yesterday we had Recker's annual IFSP (Individual Family Service Plan) with his DDD support coordinator. These meetings are always so discouraging. He has had the same goals since he was 15 months old.

GOALS:
1. Say "mama" and/or "dada"
2. Interact and play intentionally with peers.
3. Feed himself using utensils correctly.
4. Understand simple known commands/words...i.e. "take a bath", "want a snack?", "go outside", etc...

The meetings are so discouraging because I am asked every time if he was done any of these things, and every time have to answer, "NO."

Well the only good thing to come out of Recker being so far behind in communicating, is that now he qualifies for 2 hours of therapy a week instead of only one. I guess we could look at it as a negative & sad thing, but we're trying to be positive about it by looking at like now Recker gets extra help/therapy!!

We had to confirm all of Reckers medical diagnoses:
1. Encephalopathy
2. Autism Spectrum Disorder
3. Sensory Processing Disorder
4. Developmental Delays with history of regression
5. Communication Disorder
6. Sleep Disorder
7. Tracheomalacia
8. Chronic Constipation

We were recommended a feeding specialist/therapist. Which is so funny because I was just talking to a friend of mine who was suggested the same thing for her little girl, recently. I was telling her that Recker had so many eating issues and that his doctors have been worried about his nutrition and his distended belly for a long time. So grateful that we are able to have this service! They will be coming to our house weekly to work with recker on his SPD (sensory processing disorder), gag reflex and using utencils.

We have been so grateful to have two amazing therapists, Julie and Gina! They are Recker's DSI and OT and we've been with them since Recker was diagnosed! Recker absolutely loves them and so do i! They know him and how he thinks and works, so they are great with him. We unfortunately have not had the same luck with SLP (speech language pathologists), we currently don't have one and are looking! IF YOU KNOW OF ANYONE WHO IS TAKING NEW PATIENTS/CHILDREN LET ME KNOW!

We are also looking for a HAB-M and Respite provider! If you know anyone interested, contact me!!



Monday, April 30, 2012

Disgusted.

Sometimes I am just completely surprised by people and their nerve....

This is to those of you who have known us for YEARS and still have the nerve to talk about us behind our backs, and to our FAMILY nonetheless. Did you really think you could talk about us to our own FAMILY and it wouldn't get back to us?

So to answer some of your disgusting doubts, YES Recker REALLY DOES have Autism.

I can't believe I just had to say that.

I can't believe that there are people who know us that would doubt us and our honesty about such a horrendous thing.

HOW DARE YOU.

To those who like to "joke" and make light of our family's situation...Shame on you.

You look and sound so ignorant and foolish.

I am embarrassed for you.

I have had to deal with things like this from strangers and random people in grocery stores and doctors offices, but from people I considered "friends," is like i said before, disgusting and hateful.

When you "joke," make light and doubt our family and what we've been going through, it belittles our endless nights of tears, sleepless nights worrying and stressing about Recker's health, and lack of development.

It is easy for you to say hatful judgmental things, some of you don't even have children. The ones that do, while you are "worrying" about which dance class or t-ball team to put your little one on, we are worrying how we're going to get through the day, how we are going to get Recker to come out of his shell and how to treat his sensory processing disorder so that we can take him out of the house to restaurants and grocery stores without having a meltdown and getting nasty looks and whispered comments about my "horrible parenting" and my "undisciplined spoiled child."  While you are complaining about how your child won't shut up in the back seat, we are praying and fasting that one day we will be blessed enough to even hear our son's voice, that one day we will have a breakthrough and have the blessing of hearing those words every parent can't wait to hear, "mama" and "dada."


You aren't just making light of our family, but you are talking about a little boy. A boy that only has LOVE for everyone. A boy who was sent directly from our Father in Heaven.

Remember that.

Remember that the next time hurtful words are about to leave your lips...

I would never wish it on anyone, but one day you could VERY POSSIBLY be right where i am today.






In case you weren't listening during conference....


" When it comes to hating, gossiping, ignoring, ridiculing, holding grudges, or wanting to cause harm, please apply the following:
Stop it!
It’s that simple. We simply have to stop judging others and replace judgmental thoughts and feelings with a heart full of love for God and His children. God is our Father. We are His children. We are all brothers and sisters. I don’t know exactly how to articulate this point of not judging others with sufficient eloquence, passion, and persuasion to make it stick.” -Dieter F. Uchtdorf
 “I have a great appreciation for those loving parents who stoically bear and overcome their anguish and heartbreak for a child who was born with or who has developed a serious mental or physical infirmity. This anguish often continues every day, without relief, during the lifetime of the parent or the child. Not infrequently, parents are required to give superhuman nurturing care that never ceases, day or night. Many a mother’s arms and heart have ached years on end, giving comfort and relieving the suffering of her special child.” -President James E. Faust

Sunday, April 22, 2012

Diamond Backs Game

We were so excited to get a call on Thursday asking if we would come down onto the field for the beginning of the game to represent Autism Speaks and SARRC as a family with Autism. The Diamondbacks did an Autism Awarenss day on Friday. They set up a playground for children with Autism, they had several sections reserved for families with Autism and served gluten-free food. We had such a blast being down on the field and when they announced our names and had us up on the JumboTron Recker was so excited!! Recker did better than we could have ever imagined. We had the best seats behind home base and Recker stood there so well and ate bugles, cotton candy and lemonade! We were so grateful and honored to be asked to do this!

[Recker loved being down on the field, seeing all the 
players and the mascots. I was so surprised the sound
and lights didn't bother him more.]
[view from our seats]
[i love that he insists on always holding both of our hands]



SARRC Annual Breakfast.

I was so excited to get an email from Amy Hummell (Director of Autism Speaks) asking if I would join them at the SARRC Annual Breakfast (SARRC-Southwest Autism Research & Resource Center) as a guest at the Autism Speaks Table. I was so excited to go and see what SARRC has in store for this year and hear about their progress the previous years. SARRC is INCREDIBLE to say the least. They offer something that no where else in the world offers for Autism. Their research is Amazing and the resources they have for children and ADULTS with Autism is incomparable to anywhere else! I am sooooo excited to get Recker into their JumpStart Program! I know that it will help him more than anything he's had so far, and anything the that i could give him alone. The breakfast is the largest even that the Biltmore hosts each year, and I can see why, there were 2500 people in attendance and majority of them were PAYING to be there! I was so honored and grateful to have been invited as a guest! It was an amazing event and not many dry eyes in the room. The entire time i had a knot in my throat, the kind that doesn't go away. I was doing everything i could to keep from losing it, I know it has been almost a year since he was diagnosed but it is still SOOOO fresh in my mind and especially heart. That day runs through my memory like it was yesterday, the feeling of loss and despair is still with us, somedays we forget, but for the most part it is still there, so fresh. The stories and videos of the children that SARRC has helped and affected were so touching and i can only pray that one day we can get Recker into their school.


Enchanted Trip.

Recker has had so much fun getting together with friends (Dylan, Scout, and Olive) and going to the Zoo and Encanto Park's Enchanted Island. We had a BLAST! I might have more fun than him, but whats new? But I must say he did soooo well at both, little to NO meltdowns (maybe a little one when i pulled him away from the splash pad at the zoo) but i am so proud! We love the zoo, and Recker loves to ride the camels and i give in every time because he is soooo calm and relaxed afterwards, SOOOOO WORTH IT! Enchanted Island was everything that it would seem, $3 for unlimited rides and splash pad! We did the teacups, train ride and rode the FASTEST carousel I've ever been on. When he started that bad boy up lindsay and i both had to grab onto a pole because we would have flown off that thing. His favorite was the Splash Pad! He played for a good 15 minutes and then he just shut down. I looked up and he was standing in the middle with his eyes glued tightly shut and his hands over his ears squeezing harder than I've ever seen. This is not a new thing, but it is definitely becoming more frequent, and brought on easier than ever before. It was just so overstimulating, the sound of the mini rollarcoaster next to the splash pad, all the different water holes popping up and all the kids screaming and running around. It was just too much for him to handle, so he just absolutely shut down. I called his name and he wouldn't respond. I got up and walked over to see if he would look at me, he wouldn't even open his eyes to see who was touching him. So i picked him up soaking wet and had him come sit on my lap, hoping he would relax. It was the longest and worst he has had yet. We decided to go grab dinner at 5 guys afterwards and made it home just in time to put the tired kids to bed....it was a PERFECT day! I am so grateful for such amazing friends that are understanding and patient with Recker and try to understand his Autism and actually ask questions.....THANK YOU Lacy, Lindsay and Ashley!!


[Phoenix Zoo]



[Enchanted Park]
 
[As Lindsay put it, This was just a delayed response to what
had just happened in the parking lot 5 minutes earlier]
(This was the best we could get while driving and the kids 
screaming in the back seat for more bugles)






Thursday, April 12, 2012

Easiest $300 I've ever made!




So I'm apart of several market research companies and weekly receive opportunities to qualify to get paid for completing questionnaires and giving my opinion about products and services. I LOVE it because it usually takes an hour or so and you get paid average $75-$100.

Well I got an email last week about a "caregivers" research study that one of the companies was doing, it offered $300 for an hour interview and for me to complete a little "journal assignment"/collage. So yesterday i met the two kindest ladies who flew down from Minnesota to come to my house and interview me. They wanted to talk about my experience as a caregiver for Recker. They wanted to know what my days were like, how it felt to have someone who is entirely dependent on me for EVERYTHING because he is 100% non verbal and can not communicate his needs and wants. They wanted to know about my experience with our insurance company and AHCCCS/ALTCS that Recker is on through DDD and early intervention.

It was hard to hold back my emotions. I don't know if in the past year, anyone has really sat down with me and asked me,
"How do you do it?"
"How does it affect YOU?"
"How do YOU feel?".

It was so odd answering about MYSELF, I am usually answering about and for Recker. These ladies were sooo kind and sweet and most importantly patient with Recker and myself, as Recker was climbing all over everything and trying to knock over their tripod/camera (oh did i mention it was recorded?). Anyways it was the easiest and fastest $300 I've ever made, and therapeutic at the same time! Thank you Plaza!!




This is one of the Collages they had me make about what it is like for me to care for Recker. 

This is one that shows our past present and future feelings of Recker and his healthcare.

Wednesday, April 4, 2012

World Autism Awareness Day



We were so excited to celebrate World Autism Awarenss Day on April 2nd! We're so lucky to have such loving and supportive family and friends! I bought out Home Depot and resold all their Autism Speaks blue light bulbs and all the money went towards Team Recker. I can't begin to express our thanks to our friends Ashley and Logan Cooper! They went door to door and got all of the residents in their apartment complex to purchase bulbs and "Light it up Blue" in honor of Recker. We were so touched and grateful for the simple act of kindness that they showed our family and Recker (Thank you! We love you guys!).


We went down to Brookline College because they did a lighting ceremony. It was awesome to see support from the community!! Blake, Chloe and my mom joined us!

 Recker loved the blue cookies and balloons!!!



Just a little collection of photos of recker in blue! (some of them were repeated accidentally!)


Parking Garages and Emergency Rooms

We woke up Saturday morning to a sick little boy. He was BURNING up and within an hour his fever went from 100 to 103.5, we were worried! Normally i wouldn't be worried but he has NEVER had a fever, even when he had DOUBLE INNER EAR INFECTIONS. Soooo we called the doctor, his office was closed...it was Saturday. So we decided to take him to Urgent Care, it wasn't open yet....it was Saturday. Soooo we ended up deciding to go to the ER. We drove out to Phoenix Childrens Hospital because I am SURE that no other hospital could handle or work as well with Recker as PCH. They are specialists in little people, why wouldn't we take him there?

As we are pulling up to the hospital, the ER parking lot is full so we have to drive around the corner to the parking garage. The second that garage came into my vision I got a knot in my throat. I was instantly sick to my stomach. I was FLOODED with emotion. Everytime I have ever been in that parking garage, you could have caught me violently sobbing in my car. That garage is where I have to park to visit his Developmental Pediatrician. Before every visit the waterworks begin, I sit until they are under control so I can get through his appointment without crying. The second we hit that elevator to the level where my car is parked i lose it. I sit in my car sometimes for over an hour sobbing, trying to digest everything that was just told to me in Recker's appointments (usually not good news). That parking garage represents sadness. So as Jeremy and I pull into that same garage to take Recks to the ER, I couldn't hold back the emotion, i was brought to tears. Tears that were lost on Jeremy, he did not understand. Unfortunately I have to attend these appointments alone, so Jeremy has never seen me at those vulnerable moments sobbing in my car. I used to shy away from things or events that I assumed were "too difficult to do alone," I can't do that anymore. I have learned how strong I really am. Whether it be because that strength has always been here, hidden within, Or i have just been forced to become stronger. I have done and overcome so many things the past year that i just KNEW there was NO WAY i was going to be able to do it, to face it, or to admit it. But I was FORCED to pull that strength from somewhere, I needed to to be an advocate for Recker, to get through my days, to be a wife and mother.

Anyways we were received and admitted quickly into the ER. We were in our own room for over 3 hours! Recker has ear infections in both ears and a really NASTY fever. Well he absolutely refuses to take any antibiotics! We've tried EVERYTHING from mixing it into chocolate milk, juice, applesauce, holding him down and force feeding it, EVERTHING. He throws it up within seconds. So they gave him double shots in both his thighs. Poor guy, it took 5 adults to hold him down (two were men)! But at least we don't have to fight him to take meds! He is doing ok, but his fever keeps slipping back up. Hopefully we won't end up back at the doctors again anytime soon!




Friday, March 23, 2012

Mr. Gosling

Ok so another parent with a child on the spectrum is a blogger and started this weekly friday bit where we create our own Special Needs Ryan Gosling picture. It is hilarious and so fun! here is what she said in her first post about this....

"The fact is a fair portion of parenting is not fun and 0% funny.  I would go a step further and say that parenting a child with special needs is even less so.  Many of us cannot take traditional vacations with our family either because finances are too tight from all the therapies, medications, and various interventions or the disruption of our child(ren)'s schedule would be too traumatic and make the time away fun for absolutely no one.  So we have date nights with our significant others at home after the kids are in bed.  We rent movies and have a picnic on the floor in the living room.  We tag team parent to that when one is caring for our child the other can get some R&R away from the house.  We love hard and we learn to compromise.  But for those exact same reasons we burn out from stress at an alarmingly fast rate.  Think Wylie Coyote trying to outrun the rocket tied to his tail and you'd have a pretty good example of what it feels like."

i have been LOVING these. they are hilarious because it is what we parents of special needs children deal with almost DAILY: fighting with insurance, sleep disorders (aka NO SLEEP), medications, therapies after therapies after therapies, special diets, doctors every kind you can think of (gastroenterologists, developmental peds., neurologists, somnologists, nutritionists, herbologists, ENT's and any other kind you can think of), IEP, regression, Stimming, OCD (REAL OCD, not the kind where you do something weird and claim "oh i have ocd" like its cute or something), sensory processing disorder....do i need to continue? i could go on for PAGES. These little pictures are just a little comic relief for our actually really sometimes depressing and hard to accept reality of what we are responsible for and have to fight with daily. THANK YOU SUNDAY!!

So here is mine for this week....








Here are a few of my favorites that Sunday has made....