Tuesday, February 28, 2012

Hidden Blessings

I often wonder WHY. Not specifically about Recker and Autism, but in general about major events that have happened in my life. I have always wondered why they happened, when at the time they caused me so much pain. The answer to ALL of my WHY's is simply RECKER. He is the answer to EVERY question WHY. I know that EVERYTHING that I've endured and gone through in my past was all meant to happen to bring me to this moment in my life right now...RECKER. I could go through a huge long list of what lead to what that lead me to here. But in a short version, Louisiana was one of the best decisions of my life. It all lead me to my job at Highland Park Elem in (special ed) and to jeremy. I always wonder WHY did i take that job at the school?! it was NOT something that i knew anything about! The only experience i've ever had with special needs was at the Randalph House once a year with our youth church group. And honestly i was uncomfortable while i was there, maybe because i never knew if Pilar was going to POP up out of no where and scare the crap out of me like she loved to do to everyone! Anyways that job was soooo difficult, the teacher was difficult to work for (the first teacher i worked for) and one of the children had a personal vendetta against me (hahaha not really, but seriously ask me about the day i literally ran out of the classroom and drove home in the middle of work to climb in bed and cry to my mom). EVERY SINGLE YEAR i swore to myself that it would be my last, that i was done with it and was I QUITTING! But year after year i stuck it out (mostly because of the women i worked with and i love one of the students, even though she drives me crazy sometimes with her stubbornness!) and never quit, i endured the severely underpaid job and i could honestly NEVER answer the question WHY. Even when throughout my time there i endured: Dislocating my knee, chronic sinus infections from parents sending in their clearly very sick child to school, in the earlier years we were beat up daily, spit on, bit, kicked, punched, slapped, pinched, hair pulled, did i mention SPIT ON in the face on purpose?, i got punched in the stomach when i was pregnant, i had a student slap me across the face and cut my eyeball with her nasty dirty fingernail and had to go to the hospital and wear an eye patch, i was the designated LICE checker (we had a student who had CHRONIC LICE, yes. i became a PRO at combing and picking out nits and catching the live louse bug on her head), can't tell you how many times our lunches were ruined because one of the kids stuck their dirty usually boogery fingers in our food. I could go on for days.  I DAILY asked myself WHY am i still here, WHY am i doing this?! Now i know. It was because of RECKER. I know that if i would not have had those almost 6 years of working in the special ed area and learning ALL the things i learned (mostly from the amazing Jodi Kelley) there is absolutely NO WAY i would be able to handle having a child with special needs. I KNOW that i was at the job for a reason, that i felt i needed to stay because i really did NEED to. I needed to be prepared. I needed to learn. I needed to be ready. I feel sooo blessed that i have now first hand have seen both sides. I have seen how difficult some parents can be and how SOME take advantage of the system, I've seen how that affects the classroom, and now being a parent, i see both sides. I am so blessed to have the knowledge and experience that i do. I know that if i were to walk into Dr. Robin Blitz's office on D-DAY (diagnosis day) and i never had any of the knowledge that i do, it would have been completely different experience. I can't even imagine. If i didn't know what i know, i wouldn't have known so early that something was wrong. He wouldn't have been diagnosed as early as he was! I could go on with all the blessings we have experienced. I am just so grateful. I can't imagine being told my child has something as severe as autism and not know ANYTHING about it, like most parents when their child is diagnosed, i am so blessed. I am so grateful to Jodi Kelley, she is an incredible teacher and person! I have learned so much from her, not only about the special needs area but about children in general. She taught me PATIENCE (she probably won't believe that haha but its true). She did all this by her actions, she is incredible with those kids and i was so lucky to be able to work with her. Special Education teachers and staff seriously do NOT get enough credit for all that they do. The women i worked with were amazing and i look up to them immensely. They were incredible examples of mothers and taught me so much! THANK YOU!! THANK YOU!! THANK YOU!!

ps it may sound like i hated my job, but in all honesty loved it. i loved loved loved the kids, they were hilarious and so fun! I know Jodi, Nadine and Laurie are probably rolling their eyes haha. Yes they absolutely drove me crazy and some days i honestly thought i was losing my mind but the good days made up for those crazy ones. I miss my job, the kids and the ladies! But i LOVE being able to be with RECKER!!


Wednesday, February 22, 2012

Faker







[here are a couple videos from our last Target trip. Recker's new thing is to "CRY" when i put anything in the cart...he has PERFECTED the fake cry. i love how he is so easily distracted by that mint hahaha]

He has Autism, Whats YOUR excuse?

So as Recker is getting older, we are seeing more OCD and his SPD (sensory processing disorder) is becoming more difficult. It is making outings a lot harder than they used to be. So because of this i am finally seeing "the looks" from people. The ones who think i have an out of control child that i should be "handling." I thought it would be more sad than anything but i am ANGRY. I feel so much anger towards those ignorant judgmental people who give me those looks. The ones who could not stop staring if their life depended on it. I really started noticing it the past two weeks. Im telling you it is literally taking everything in me to keep from going crazy on their asses! Most of them are grown adult women who should sympathize with an "unruly" child (because heaven knows there is no such thing as a perfect child). I just can not understand how someone could be so obviously rude. 

STARING IS RUDE!


[soooo cheesy...but i want Recker to wear this shirt EVERYDAY!]

Lovesong

So i know this is late but i just had to post about valentines day. I can't begin to describe the love i feel for the two guys in my life (recker and jeremy). Me, being the more serious and mellow one of the family, am so grateful for their energy, humor and their ability to always put a smile on my face. i woke up and got to cuddle with my guys and spent the day relaxing and eating and playing! 


[Recker's First Valentines Day]

[My two Valentines 2012]

Tuesday, February 14, 2012

Anchor Mindy Gledhill


I love this album and have listened to this song so many times but it never really hit me until a few months ago when i was really listening to the words, how much it relates to Autism. Maybe its just me, but those words are what i picture my son and millions of other children who suffer from ASD would tell their Moms or caregiver if they were able to. This song gets me every time. 

Anchor

Mindy Gledhill
© 2010 Blue Morph Music (BMI)

When all the world is spinning round
Like a red balloon way up in the clouds
And my feet will not stay on the ground
You anchor me back down

I am nearly world renowned 
As a restless soul who always skips town
But I look for you to come around
And anchor me back down

There are those who think that Im strange
They would box me up and tell me to change
But you hold me close and softly say
That you wouldn't have me any other way

When people pin me as a clown
You behave as though Im wearing a crown
When Im lost I feel so very found
When you anchor me back down


Chorus
When all the world is spinning round
Like a red balloon way up in the clouds
And my feet will not stay on the ground
You anchor me back down



Monday, February 13, 2012

Photos From This Weekend...

 

Nursery School Dropout

We've been having such a hard time getting Recker acclimated to his Nursery class at church. Today i new it was going to be rough, because the second we came around that corner and he saw the door he started crying. He wasn't tired, because he had just had a 3 hour nap, he wasn't hungry because he had just eaten. He just has such severe separation anxiety in sometimes and it worries me for starting school in the fall. Well we walked in, usually i stay in with him as long as i can, but this time i decided to just bring him in and drop him off with his Nursery leaders (who are super sweet and understanding). He was sobbing and clinging to me, but i snuck out when he wasn't looking (maybe my first problem, but either way he would have reacted the same). I sat down in Relief Society and before we even started they had taken him out of Nursery and brought him to me. They said he was throwing up over and over again. I wasn't surprised. He does that at home when we put him to bed before he WANTS to. He cries so hard and throws up repeatedly. I completely understand why they can't let him stay in there, they are not paid to be nursery leaders, they have no experience working with special needs and its just not their responsibility to be cleaning up vomit. We are just lost at what to do at this point. We are hoping that we can get a BCBA since we have now been qualified for ALTCS/AHCCCS  and maybe they can help.




Thursday, February 9, 2012

Fix You


I couldn't help but share this video made by Lou Melgarejo, the father of a daughter with autism. This video says everything. It shows his dedication to helping his daughter and i LOVE it, i feel the same determination and drive everyday. Please take 5 minutes of your day to watch this video. One of my new year resolutions is to share Autism Awareness freely and more often!

Wednesday, February 8, 2012

If Only

Today is the day we've been waiting for for close to 10 months now!! I finally received the call saying that Recker has been APPROVED for ALTCS (Arizona Long Term Care Services). We've been fighting for this and going through the process for so long and we honestly never thought we'd see this day. We were denied back in July, the interviewer's direct quote was "he is not retarded enough" the next thing she said was, "ARE YOU CRYING?" because yes i was sobbing, they had denied my son because he wasn't disabled enough, are you kidding me? i was crying because that meant we had to continue to pay the thousands of dollars for his medical expenses and weekly therapies that he NEEDS! We were told that we could reapply when Recker turned two. I saw Recker's doctor, Robin Blitz (developmental pediatrician) and she was incredible, she told me that there is NO way that they should have denied him and that when we reapply in December, if he is denied that she would personally help me fight and sue the state for services. I can not tell you enough how much of a burden she lifted just by offering to help if need be. She is everything i think a doctor should be: Honest (even if it isn't what you want to hear sometimes), resourceful and she helps parents become advocates for their children. I honestly am so grateful for such an amazing team of Doctors at Phoenix Childrens Hospital. So i've been prepping and preparing myself since July for the worst, being denied again. I filled out another application at the beginning of December and finally received a call in January to schedule an interview for Feburary 6th, this past monday. I was so nervous, even though i've been preparing for months i felt like i was losing my mind and lost, but i made myself pull it together and i thought i would feel relief when the interview was over, but i didn't. When it was over and she left, i broke down (i only cried a couple times during the interview this time instead of sobbing like last time). I can't tell you how depressing it was to not be able to answer "YES my son CAN do that", instead i had to say "NO my son can NOT do that", to question after question after question. I lost it when she asked the question "Does he know the words Mama or Dada?" No, Recker can not say "MAMA or DADA" not only can he not say them, he does NOT know that i am "MOM" or that jeremy is "DADA," the meaning is completely lost on him. I think that people take for granted what their little ones can do. When we are around friends and family, and i hear their babies say "mama" my heart aches, it kills me, i can not tell you what i would pay, give or do just to have my son look me in the eyes and say "mama," even it was just ONCE. I received the call this evening, "Kayla, Recker has been approved for medical" those words have lifted such a burden off my mind and heart. We will FINALLY be able to get Recker the help he NEEDS! The few hours of therapy a week he gets is great, but in the past almost year, we have seen almost NO improvement and actually some regression in several areas. We will be able to get him Respite, Habilitation, ABA (applied behavior analysis), and all his therapies and medical completely covered. This is one of the biggest blessings our family has received, we've been praying so hard for this. I finally feel like i can give Recker everything he needs. I have felt like such a failure up until now, so discouraged and weighed down. The feeling that your child could be excelling and improving "IF ONLY" i had the help i needed from the state, the help that my son is entitled to. I feel like I've lost so much valuable time that he could had been receiving the services he needs, i feel like i should have been fighting harder. I know there is nothing more i could have done, but that feeling of helplessness is haunting and with me constantly. I'll forever wonder "what if", what if we would have had the services earlier, would he be talking? would he be communicating with us? would his behaviors be under control? This "what if" game has been driving me crazy, i don't know how to just let it go and accept the fact that I've done EVERYTHING i could for my son, i just don't know how.




Liquid Gold

So for awhile now we've been a one car family. My husband's truck has been broken and so he's been driving my car to work, meaning I'm stuck at home all day unless one of my amazing friends or my mom comes and rescues me. Anyways, my point is that i haven't been able to make it to Sprouts Farmers Market lately, meaning we're out of Melatonin. NIGHTMARE! Ok so Recker has been on Melatonin for awhile now for his sleep disorders (which we're going to do a 36 hour sleep study for coming up here soon), since we've been using melatonin, we've all been sleeping regularly therefore we are an all around happier bunch. Well like i said before, we've been out of melatonin and by the time I'm able to go and get some, Sprouts is CLOSED! I am not exaggerating, Recker was hurdling the footboard of our bed like a gold medal olympian the other night because he was WIRED!! I was, not going to lie, scared for a quick second, this kid was a crazy banshee! Around 12:30 am he started full on BODY SLAMMING jeremy while he was sleeping. Needless to say we've been having some very long nights and early mornings. Thankfully i was able to get some melatonin last night and get some back ups so this never happens again! I think I'm going to get on an Auto-Ship plan on Amazon.com just to be sure hahahaha. Recker slept soooo well, i went into wake him up for therapy this morning and he was just not having it. I opened the blinds, turned his music up, turned on the lights and fan and continued to clean up his room (making sure to make lots of noise) and it still didn't work! So i climbed into his crib with him and he finally popped his head up, took one look at me in his crib and laid his head back down to sleep. I felt bad waking him up when he was finally catching up on the sleep that he has been missing out on this past week, but it was time for therapy!







Friday, February 3, 2012

GFCF

Ok so we decided to put recker on a GFCF diet back at the end of July (2011), we started by first only removing the casein from his diet. We saw INCREDIBLE results, he was "talking" (babbling/jabbering) more and became much more social and initiated interactions rather than being forced, he was just all around improving! So a month later we decided to introduce the gluten free part of the diet. Im not going to lie, i was seriously TERRIFIED because I thought it was so complex and difficult, but i thought i'd at least try it and see if we saw a difference, what could it hurt? Well we saw a little improvement, but NOTHING like we did with the removal of casein. We have continued to (with the exception of one week a few months back) stick to this VERY strict diet. But recently we have seen a HUUUGE increase of flapping of his hands, toe walking, tongue clicking, and spinning in circles (which he rarely did before). We were just so confused, we have been consistent and nothing has changed in his environment, his therapy is the same, he just was "getting worse." Well we had an appointment to see Dr. Gary Silber Recker's pediatric gastroenterologist, we talked to him about the GFCF diet and all the GI issues that recker has always had. Anyways he said that most of his patients that he sees that have ASD are much more affected by the removal of Casein from their diet than Gluten. He gave us all of our options and told us that he suggests watching him for the next two months to see if his behaviors improve or get worse and if we think it has to do with a GI problem or is it just his inability to communicate to us. Is he acting out because he is in pain and can not tell us, or is it more of a behavioral issue due to the autism. He wants us to be completely sure, because the next step is to do a GI endoscopy and biopsy, to test for disease or abnormalities. Well we put Recker back on gluten last week, and as crazy as it sounds, i think he's improving?! In each therapy this week, all 4 said that recker seemed "happier", "more compliant", "able to concentrate better" "able to attend to one task longer than he ever has." They asked what was different, because they could CLEARLY see an IMPROVEMENT, i told them that we quit the GF diet and he had been eating gluten for a week. They were shocked! I know it seriously makes no sense, but that is what is happening for him. We are soooo happy! Recker this week has been INCREDIBLE!

Things he has done this week that he hasn't done in months:
-Sign "more" (we've been working on it since this summer and now all of a sudden he is signing it)!!
-Attempt to make more sounds (try to form words)
-He has started to CLAP!!! He has never clapped before!!!!!!
-He is just an all around happier child, he has been cracking us up all week, he is so funny and this week has been incredible!



 This kid cracks me up, he knows that if he goes and dups dirt all over himself 
that he will get ANOTHER bath!...HE got what he wanted!