Our4Boys

Trying this again…since I was almost through my blog and my cat jumped up on the power switch and turned the computer off and the autosave didn’t save.  It’s okay, pretty fitting for this day.

Maxwell woke at 3am and was nutty…and so needless to say I woke at 3 and am trying to find the strength to do my p90x today but I don’t think its happening.  My head is pounding from lack of sleep and Christopher’s 2 hour meltdown.

I was pretty emotional speaking to Stone earlier, but I didn’t show it…though he’s my highest functioning of the boys on the spectrum, he struggles in so many other ways.  He says how many times he’s tried to talk to people at school and he is in his words”shooed off like a gnat”.  He himself said he’s socially awkward, and prefers to be alone.  I had to cut the conversation short because it was breaking my heart and I needed to collect my thoughts and come back with better words of wisdom.

Trevor went to wet n wild today with a friend.  It was this kid’s birthday and he took Trevor and another kid to wet n wild.  I hadn’t heard from Trevor all day and I assumed he was staying over again and I will pick him up tomorrow.  One of my times calling him he picked up his phone…he sounded sad, not tired but sad, not a kid who had just spent the day at a water park.  So, moments after he got off the phone with me, he texted me that this kids was being a jerk but wouldn’t go into details.  He asked me if I could pick him up…of course its 10:20 pm and I still had a 4 yr old awake from the asscrack of o dark thirty but my kid needs me right?  Yes he needed me, and I wouldn’t know how much until he got into the truck.  He told me that after they got home from the waterpark, they walked to the 7-11 and bough some candy.  As they left the store, some older kids asked for some of the candy and he gave them some, then they stole the candy and ran off, Trevor being Trevor ran after them…they punched him and what did his “friend” do?!! He bullied him, teased him, YOU GOT HIT!  YOU GOT HIT!  YOU GOT KNOCKED DOWN!  I am sorry but what the hell?  I was already driving and I asked Trevor if he wanted me to go back and speak to his parents…but Trevor said he really didn’t want to make a big deal of it.  I promised him I would only let it go  if he promised me that if he receive one text, one phone call, one iota of bully behavior he would let me know.  I told him it was good that he found out this kid was a punk now and not 5 yrs from now.  Though this kid was not affiliated in any way with the assjacks who punched me kid in the eye, he might as well been.  He did nothing to defend him, and only berated him after it happened.  Who are these parents that raise bullies?  Who are these parents that raise punks?  Do they even know?

Trevor’s birthday is next weekend, I hope to make it a much better weekend for him than this one.

well, I better go to bed, because I never know when these jokers might wake up for a middle of the night jump on the trampoline.  

Hey so if you are faint of heart or hate TMI just X out of this screen right now!  I warned you!

So did you ever just have one of those days?  Today was one of those days, it ended well with a great Zumba class until I realized 3/4 of the way through the class that my underwear were on wrong …awesome right?  Just kept hoping I would shimmy and shake them back into place but no such luck..TMI?  Sorry… get over it!  LOL

The last few days have sucked, I will not sugar coat it.  Friday, Chris woke and I got him ready for school as I did the other boys, as I was ready to put him on the bus the sun hit his adorable little face and his eye appeared irritated…then the assistant told me pink eye had been going around a few of the classes.  No biggie right?  Called our new primary, he ordered the eye drops.  No problem right?  The next morning, Chris woke with a rash all over his body, faint, but I new it was there, it was hot to the touch and started under his one armpit and then seemed to spread all over his body.  He was sort of lethargic and not himself, which he hasn’t been lately, sleepy a lot in school….even when he has slept well the night before and three times in the last month or so I have noticed a man body odor to his pits…HE’s 5!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  what the freak???  Okay so I brushed it off the first 2 times, he’s a large child, probably 75 lbs on a light day =) and 4 and a half feet tall…he’s giant!  SO back to my story, he woke on Sunday seemingly better, barely could detect the rash at all let me tell you when I immediately saw it I thought yeast overgrowth, then saw the photos of Fifth’s disease and though it surely could be that, its just a viral thing that kids pass, no biggie right?  Well I figured surely he’d wake on Monday morning raring to go back to school because even if it had been Fifth’s, once the rash is present it is no longer contagious….  he did not wake raring to go, in fact, he was restless last night, very restless, and when he woke the rash was faint but present on his legs.  He then pointed to his penis and said boo boo, it was raw and red,  BUT DANGIT HE VERBALIZED THAT TO ME =)   I called his primary as soon they opened, his dr.  had no available appts today and unfortunately if I wanted him seen I would have to go to the other dr. who shares the same practice.  I have had to take one of the kids to him before when I ran into this situation before with a kid who needed to be seen and my dr wasn’t available.  UGH so I take the next available with this other guy, as he enters the room, Chris is on the floor, hiding behind the privacy curtain, pressing his body up against the door.  Maxwell was jumping and flapping….Trevor was there to help me, I needed help!  After hearing my concerns, and looking at the rash he agreed it looked like a yeast issue.  WHAT HAVE I DONE TO MY BOY?    Now before I go on, let me say I tried wholeheartedly the gluten free casein free diet I did it for 6 months….made most of their food, agonized and hoped it would get better, made special cupcakes to keep at the school so I didn’t see the sadness of their faces when I walked into a kids birthday party when boys were the only ones without….and many other sabotaged situations…I really tried.  I saw no change….but now I feel as though I have no choice but to try again, slowly, after school lets out in a few weeks I feel like I need to try again.  I am just so not knowing what to do.  It almost feels like so much has happened so recently.  As a result of the visit ….there will be a follow up to see what’s going on, but I want to talk to his real dr. about the body odor and follow up with him.  I am feeling one way, but also feeling like a slacker.  I know how hard the diet was for me.  It was ALOT of work.  You do get into a groove and get it down, but anyone who says its not a lot of work to make sure that nothing is cross contaminated especially when you are living with wheat eaters or dairy eaters in the same home.  We all eat so different.  Regardless, I feel I have no other option other than trying the diet again…I have not been told my children have an allergic reaction to gluten, but I do know he most likely is having a yeast overgrowth and its affecting his behaviors and making him tired.  

My heart hurts, for my boys, for all of them….I need strength and do you know where I found it today?  I found it in my boys. As I was getting ready to leave to teach my class tonight, I went to Christopher, I asked him for a hug, and a kiss….he looked at my lips, he said RED!!!!!  He told me tonight BLUE BLANKET, these are the first two colors he’s learned.

My husband, my sweet husband…I miss him so much.  I miss the way he smells…The way he leaves his socks on the floor…the man who keeps me going so I can care for these four little men…. I love you baby, stay safe and strong.

Zumba class down, P90X to go!!!!  oh gosh I am sore, and not just because I had my underwear on wrong =P

It always occurs to me, but even more so during “AUTISM AWARENESS MONTH”, how very divided the autism community is.  It has become increasingly apparent to me in recent years during the month of April.  This is because in my opinion, so many of us are searching for the same thing, and even though many of us know in our hearts why, there are always the parents that bash us for feeling the way we feel.  We all would stand on our flippin’ head for 14 hours a day in a purple tutu with orange polka dots if this was the “cure”.  We would do whatever, and many of us have.  We have tried “the diet”, for us, following it 100%, we saw no change.  I don’t down “the diet”  I think for a person who has a true gluten intolerance,  it may be incredibly helpful.  In our case, it wasn’t the miracle we were hoping for.  

There is the diet, there are different therapies including; biomedical as well as other medical interventions, there are countless things that many of us do.  Some swear by this or that.

What seems to be lost in this all is…  just as there are  numerous varying ways to deal with autism spectrum disorders, there are equal varying people on the spectrum….there is no one cookie cutter person, on the spectrum or not.  We are all so different….yet we are the same…. This is ONE thing we can all agree on.  Why fight?  Well, we will never stop fighting, be it insurance companies, doctors,  fighting our kids for sleep.  Fighting for one poopapalooza smear-free day, fighting through haircuts, fighting to brush teeth.  We will keep on fighting.  We have to.  

We may never agree on all aspects of how to deal with Autism, or how it became, but what upsets me most is people that outright shoot me down without hearing me.  People that have no children with special needs or better yet no kids at all and still want to judge me.  It’s pretty amazing.  They will never know, the sleepless nights, the flapping, the rocking the jumping, the swinging for hours on end….and let’s not forget poopsmearing =)  

            BUT THEY WILL ALSO NEVER KNOW:  the love absolute that is felt when our 15 yr old writes his name with enough grip strength that its legible, our 5 year old pees on the potty for the first time or has a day that he says words other than just having echolalia, or animal sounds or vehicle sounds….or four yr old has an awesome occupational therapy session and didn’t have too many maladaptive behaviors…..didn’t bite his teacher….and made eye contact. The pain in your typically developing 11 yr olds face because he lives in this craziness, trying to help him through it all, because often our typical kids get overshadowed by Autism in the family. These are the things we live for.  The moments that we as Autism parents can unite on.  We all deal with enough regression in our lives with our kids…let’s agree that though we may not all agree on everything, we are united, we are all equal and are dealing.  Reach out, we are in this together.  We can’t do this alone, and shouldn’t have to.

I am fortunate to have to not go it alone,  I have my strength, my rock, my heart. I have said it before and I will say it again a bajillion times….Autism life is like climbing a rock wall barefoot covered in baby oil, he’s always there with a chalk bag, keeping me grounded.  Keeping me sane…..helping me clean up the poop.  Thanks Rob, thanks for helping clean up the poop.  =)

-Amy