there's MoNSteRs in my BED!!!!
So last Monday night we put the boys to bed as usual (the rock is still in his porta-crib). After about 15min Taz starts saying "There's monsters in my bed. DAD there's monsters in my bed! MONSTERS!MONSTERS!" Both Heman and I yell from downstairs "There are no monsters go to bed!" Taz starts crying and yelling "MONSTERS!" So Heman gets up and goes upstairs to find a MONSTER (the Rock) climbing all over Taz. It was black in their room and the Rock had never climbed out of his bed before (even though he loves to climb), so we didn't think it could have been him, but it was. Taz was relieved to find out it was only his brother and we were laughing!
Now naps are pretty much over unless the Rock is exhausted and I know he doesn't have the energy to fight it (he is just like the other kids, tonz of energy). As far as bedtime goes, we have had to just wait until he is tired, instead of a set time. All because how do you tell a little boy to stay in bed, it's bed time, when he doesn't understand. This is just a knew adjustment to our lives and a learning curve to how autism effects the Rocks understanding and ours.
but I'm NOT READY!!!
Why is it that no matter what, time keeps ticking forward? In little more than 30 days Spunky will turn eight, YES 8, EIGHT! The age of accountability, I'm not ready. I can't believe that my second child is getting baptized. Time flys NO MATTER WHAT! Spunky is spunky and it scares me more than anyone to have her grow up. She is just her and I know all of you know what I am talking about and you are all scared for me. Honestly I just pray every day that she just gets that she is worth all that is good in this world and doesn't need to try everything just to try it. Did I tell you that about a month ago she asked me "Mom? What will you do if when I'm eighty(80) I smoke?" I respond with "Well I'll probably be dead so nothing and Why would you want to smoke?" she says "Just to try it, I'll almost be dead any way." SeriousLY!!! What goes on in this girls head? I know you all think she's just like me, but I don't ever remember thinking about stuff like that, maybe I just have selective remembering. I'm SCARED and NOT READY but HERE IT COMES! April 26th she turns 8 and May 8th she gets baptized. Save the date! She is already practicing holding her breath for 10min in the bathtub, just in case "You know everything has to go under the water."says Spunky
ShoCk and AwE!!!
We are so excited to have so much more help for the Rock between the new sensory class twice a week, EI therapist, and our new found love Autism Journeys. Everyone is wonderful and we finally feel like we are on top of Autism and not standing around wondering what it will do next.
Today was awesome! I went to pick him up from his sensory class and got there early to see a miracle....the Rock sitting in a chair watching the teacher all by himself! I know this sounds like not much but they said he sat there for most of circle time. This is huge for his attention awareness.
I love new little things that are actually little miracles for us. He has started coming to me and reaching for me to pick him up. This too is a new miracle and although I wish I new what he wanted when I did it, I love that he wants me (even if only for a second before he goes somewhere else).
I am amazed all the time by how much he understands (when I say hot on the stove, when Daddy comes home, when he's poopy(he always finds me, sometimes the only time he comes to find me). But then he doesn't understand that (when all the lights are off and everyone is leaving the room it's time to leave, when I ask him if he wants a drink or something to eat, that climbing on the tallest thing in the room is very dangerous and the list goes on.)
Everyday is a new day with new highs and lows...I know it's called life but a little different and something we are still learning about for us and the Rock.
what to say.....
to any parent or person.
"How are you doing?" This says it all, it says you care and it allows them to answer if they want to. Don't be offended if they don't share with you, sometimes its just too hard. If they do share and you want to help, ask if there is a way to help or just let them know that if they do need you, you will be available. Then when they call be available! I and everybody realizes no one is perfect and that we all say things that hurt sometimes without even knowing it. Hopefully these last two posts will help you and me not say something that can hurt. I am sure I have and will in the future, for that I ask your forgiveness now and please know I am not trying to hurt you.
what not to say.....
to a parent of an autistic child.
#1 No he's not. I don't believe it.
#2 He doesn't look autistic.
#3 Why do you think that?
#4 What gifts does he have?
#5 My kid does/did that too.
#6 Who told you that?
#7 He's too young to be diagnosed.
#8 Don't give him a label.
#9 You should discipline your child better?
#10 He doesn't act like other autistic kids I know.
The truth is if you've met one kid with autism you've met ONE kid. There is a huge spectrum of autism and EVERYONE is different. I know that no one has said these things to hurt anyone, but the thing is it does especially at the beginning of this journey. At the beginning your head is spinning and you question everything you are doing and not doing. You go through every stage of grief because you have lost something, your child. You are not sure of anything any more because the life you had is over and you are on a new journey. SO any question that question you or your decisions, cuts to the bone. All anyone ever needs is to be validated, to be reinforced that they are doing the best they can. We all just need love, support, and prayers. We are doing the best we can.
***if you have said these things to someone don't worry, they have already let it go...probably.
Life Lessons Learned Over and Over and......
So I've decided to write on my blog again in hopes that if it's out here then it won't be in my head any more and help me figure things out. Yesterday was an enlightening day for me and Heman. Life has not been a bed of roses and much more like a fire pit.
I have a new title for our family to go with a new out look. With all that has been going on I have felt like our lives are in pieces and I can't find or be the glue to put us back together. What kinds of pieces you might be wondering well here they are and the life lessons I have to keep learning over and over and over again.
#1 We were recently told that well of course things are hard right now moving across country once let alone twice in 8mo. is life changing and usually very difficult to deal with (no duh! I didn't need to hear that). the glue or answer is....don't look back you might be turned to salt, like Lot's wife. God has a plan and as long as you are seeking for HIS way you will be where he wants you to be.
#2 I have to be the leader (I know you are all stunned at this news)and I am not feeling like I have value if I can't produce income in some way. Being the leader, boss, manager validates me as a person and I don't know how to do this. I kept wanting to find something outside of home. I wanted to work with Heman (another piece). I have felt lost and unsure of my purpose. the glue or answer is...you are the leader, the boss, the Manager Of Mayhem (M.O.M.). All the executive roles I wanted to have and need to feel validated are all in the home if change my perspective and realize that I do have value to my loved ones.
#3 We have been sick for one, two or three weeks out of every month for the last eight months for no reason other than the fact that I don't think you are suppose to move across country twice in one year. It throws your body out of wack. So to say the least having a workout schedule has been impossible. Some might think that's great but for Heman and SheRa it stinks and it feels like part of you is missing and something extra is growing around my stomach.
#4 Punky and Spunky have been struggling in school. I of course took this to be a reflection of bad mothering. the glue or answer is....out sourced help. Did you know that resource in school is not just for the mentally disabled? Did you know that resource is for students that are extremely bright but have some sort of learning disability that doesn't let them perform to their potential? Had I known this I would have asked for testing years ago. My daughters are bright, intelligent girls that have a hard time putting everything together. I thought that that is what I've been saying all these years and no one was listening. NOW they are and the girls are getting help.
#5 Taz in the midst of all the crumbling of our pieces is twirling around begging for more attention (literally as I write). It's the nature of the beast I guess. the glue or answer is...do my best, I don't have any other ideas, right now.
#6 In November of 2009 the Rock was diagnosed with Autism (wow to write this makes it that much more real). It's been a roller coaster of emotions just with this piece of our lives. the Rock has been in therapy for the last four months. Yes we have been blessed with progress little by little and yet a few steps back. We have hope that because we have learned about this so early we have ahead start and will be able to give our son the best and the most of what he needs. More will come as we move forward.
the glue or answer is....faith and hope in the future.
#7 Heman's new job! I have this vision of working side by side with Heman. When something new came into the picture I felt I was being pushed out. I'm his partner not anyone else, right? He kept saying God has given him this opportunity to provide for our family and I saw it as God punishing me and taking everything I need away. Why would God do this to me? the glue or answer is....God's not doing this to me, he's doing for someone else. Heman is where God wants him and if I change my perspective I can help and be there for someone else as well. So sad that I had to learn this lesson in particular twice in one year. I hope I don't have to again. It stinks feeling like God has abandoned you, when really he's right there just waiting for you to open your eyes to the whole picture.
#8 FEAR, I have felt so much fear for the last I don't know how long, years (seriously). Even though I know that fear and faith can NOT exist together I still thought I was doing a good enough job enduring. NOPE! I had to experience for myself the words I had to say to a friend 31/2 yrs ago, YOU HAVE TO CHOOSE FAITH! I wish I didn't have to learn that one first hand, but I did, even though inside I already knew it.
It is my hope that as I have shared bits and pieces of our pieces with you that you can learn from me. I hope that I can give you hope and faith for the future.
Pres. Boyd K. Packer, once said,"If you are helpless, he is not. If you are lost, he is not. If you don't know what to do next, he knows. It would take a miracle you say? Well, if it takes a miracle, why not?"
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