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! 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 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.