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And This Too Shall Pass

It will be ok, I told myself. He’s just a little late, he will roll over soon, he will crawl eventually. But “just a little late” turned into late  for every milestone, skipping some all together. By 2 1/2 years old BB was barely talking, much less than his typically developing peers. I remember the day before we had his first evaluation with our Neuro-Developmental Pediatrician. We were in the mall, a very sensory rich and overloading environment. I had taken BB then 2 1/2 and LS then about 6 months old with my old high school best friend and her daughter to the mall to play in the kids play area. We stayed too long, i told her we barely had an hour at most before it’d be too much for BB. Even back then I knew his limits and warning signs, even before when knew he had Autism. She kept pushing to stay longer, until ofcourse her baby needed her nap then it was “hurry up lets go she needs her bap” BB lost it in the middle of the mall, wailing, screaming, frozen, standing and rocking himself and tapping his head repeating over and over “apple, apple, apple” i looked up to my friend for help, but she was so mad at our embarrassing her and my son ruining her schedule and her daughters nap time that she walked off without us, which made him more distressed. I was trying to help him with one hand, and hold the baby stroller with LS in it with my other hand. The mall was way crowded, people were staring, whispering, judging, shooting dirty looks. I was crying at this point, i was scared for my boy, mad my friend abandoned me and not sure what to do. I thought to my self ” He’s Autistic, he has Autism, this is what Autistic kids do” I tearfully picked him up, and tried to hold him with one arm and push the stroller with the other. When i finally got to the car my friend looked at me and said “That’s NOT normal!”. Wow, really? thanks. The next day we got the ball rolling with the Neuro pediatrician. She prescribed OT, Speech and talked about other interventions besides the ESD early intervention he was receiving through the early childhood program in our school district. I spent the next few years in crisis mode. It became all about BB. How to help him, how to help him communicate, help him eat more foods, how to get him to let me bathe him without a 2 hr meltdown, etc. We had a third baby in that time also, great idea right? 🙂 we love our kids, but most people thought we were insane. LB joined the world and we went on, our little family of 5, in this weird noisy world together. BB went on to Kindergarten, we met his amazing teacher Ms. B and things started to click. BB made a lot of progress in her class. It was in that year I had my first glimmer of hope. Ms. B told me that he would be ok, that he was smart and wonderful and he would succeed. Autism or not he was a great kid. Find your tribe she said, youll be ok. After BB left her class things took a really bad turn. BB got worse, LS got lost in the shuffle and LB started showing signs of developmental delay and sensory issues just like BB did at his age. We took him to the same Neuro-Developmental Pediatrician and got the OT and Speech and ESD help going. I was crushed, discouraged and tired but i didn’t quit. “This too shall pass ‘ I said.”Find your village”, i told myself, “find your tribe. It WILL BE OK!” It was just this year that I had more ease, even in the really bad moments. The kids are now 10, 8 and 7. I watched BB yesterday in his last Soccer game, playing his heart out, flapping his hands away in his stimmy run, fearlessly after that ball, just like any other kid. His coach, treated him like every other kid, the other kids did too. I could’nt help but think to myself, it really WILL be ok. My boys have special needs, my daughter has a learning disability, I’ve got a little bit of craziness called bi-polar, but you know what? WE ARE OK! We live, we laugh we love. My kids are smart and beautiful. They are talented, caring, kind, silly little creatures. I don’t care what labels you throw at us world, bring it on! because in the end I know, I have found our village, I’ve found our tribe and WE ARE OK!

Keep it real. Embrace, accept, educate, advocate.

Love,

Mama C

BBsoccer3 wpid-20150405_083131.jpg LB, LS, BB Summer time

BB Soccer 2015                   LS and LB Easter Sunday 2015             LB, LS , BB Summer 2011

 
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Posted by on May 4, 2015 in Uncategorized

 

Marvelous Monday!

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Happy Monday! LS and I had a Lil impromptu photo shoot this am. How did your Monday start? I start training for my new job today! So excited!

 
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Posted by on April 27, 2015 in Uncategorized

 

She Gave us HOPE

Like many parents of kiddos experiencing special needs I was thrown into this world not really knowing what to do, what to expect and how to survive let alone thrive with my child, to help HIM thrive. By the time my son was five and entering Kindergarten I had no idea what to do about school and no idea how to get what I believe he needed. At the IEP elegibility meeting I tried to stand my ground and push for what I felt was best for my boy, but in the end the strong willed better informed school district won. Judah was placed in an SLCB classroom (Structured Learning Center for Behavior) I thought this type of placement was the end for him, an educational death sentence before he even got to begin. Little did I know what lay in store for him, and who God had set in our path to help.
I had no idea what to expect the day I entered Ms. Bach’s classroom. I walked in nervous and on edge, scared and unsure of what this was going to be like. She took one look at me with my nervous smile and non stop chatter, smiled shook my hand and said “your doing fine mom, and he’s going to do wonderful!” She let me look around the room a bit and then sent me off, promising again “He will do wonderful!” I did not know this woman, but for some reason her bright eyes and firm kindness set me at ease. J flourished in her class. My son went from a runner who took 20 minutes to corral in from recess to a boy who was eager to please and capable of mainstreaming for first grade. I volunteered one day a week in his class, doing anything I could to try to be of help to his class. After all, it’s what I’d done when he was in preschool, elementary should be no different. Ms. Bach Gladly put up with my chatter and wrote me lists of things to do, gave me encouragement and support and just let me be. I don’t know if she knew, but her allowing me to volunteer in her class helped me a lot and taught me so much. I can never repay her for what she did for us. She wasn’t just my son’s teacher, she gave us HOPE. While Judah flourished in her class, home was still a struggle. One day while asking her advice on applying her structure in class at home she said “well, maybe it’s time we did a home visit” I gladly accepted. I didn’t know this was not common practice for elementary school special ed teachers. My son’s head start and ESD teachers came over all the time. Ms. Bach spent a couple hours at our home. She sat on my couch and gave me pointers, skillfully observing and making sugestions, providing support and teaching skill. She was unwavering, patient and kind. After one trip of redirecting J back to his room for a nap I looked up to see her folding my pile of clean Laundry that was on the couch. With a smile she just nodded and gestured behind me ” take him back again, be consistent, your doing great.” J had come up behind me insistent on winning his way. I looked at her with gratitude in my tired eyes and said “thank you” it wasn’t enough, but there weren’t words adequate enough to express my grattitude. She just chuckled and pointed down the hall. I took J back to bed and she folded laundry. I learned so much from her that day. And not just about consistency and teaching my son, but about human kindness, love and dedication to those you serve and care about. It is rare these days to see someone, especially someone already giving so much go above and beyond, but Lisa Bach certainly does. She’s not just a teacher, she’s a parent, foster parent, grandma and fearless advocate and friend to our special needs community, she is apart of us and we are a part of her. I always tell moms with newly diagnosed kiddos “find your village, find your tribe, and you’ll be just fine” she may have not used those exact words, but I learned that philosophy from Lisa Bach. Judah only got to be in her class one year but I will never forget the gift she gave us. The impact she had on my son and our family will last forever. Lisa opened up a whole world for us, she never wavered in her confidence in J or her support of my ability to help my son. She always said “He will be ok, he’s brilliant, he’s capable, he will succeed!” That’s something a mom needs to hear and I believed her, because she genuinely believed it and that gave me the strength to see it and fight for it and believe it too. I’m the advocate for him that I am today because of Lisa Bach, her example and love and talent. It’s because of her I had the guts to take on some pretty big issues this year. She doesn’t know that, but it is. Without that example and gentle but firm push in the right direction, I don’t know where we would be today. Lisa helped us find ACAP (Autistic CommunityActivity Program ) a summer program for individuals experiencing Autism, she helped me find my voice as a mom and an advocate, she helped my boy feel safe and enjoy school for almost the first time ever. To this day, the best year and academic success J has had was in Kindergarten in Lisa Bach’s class and we couldn’t have done it without her. Lisa helped us see our son’s potential and showed me how to dream add believe and advocate. I plan to get my masters in social work administration and have my own non profit someday, advocating for other families affected by disability, and I owe that dream to Lisa. When I meet moms of kids who are at the beginning of their journey, who look like I did, scared and shell shocked, I think of Lisa and I say ” you’re doing great mama, he will be fine. It WILL be ok!” And it’s true. Lisa Bach taught me the value of community and the true meaning of love and sacrifice by going above and beyond for our son and our family. There’s so many more stories I could tell, but that would take too many words 🙂 So to close I just will say: Thank you Lisa for loving my boy, for giving us hope, for being patient with a scared talketive mom and helping us find our tribe. We are forever greatful.

Much Gratitude and Love,

Mama C

 
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Posted by on April 20, 2015 in Uncategorized

 

Happy Easter M family style… note to self, buy more duct tape

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So, it’s that time of year again. Easter. Jesus is risen, he paid a precious price for us, forgiven our sins forever so we might have everlasting life with him in heaven should we choose to follow him. And it’s also that day when good old yours truly takes mental note of how many bags of Cadbury mini eggs it will take her to go through to give her enough sanity to brave church.(which that part still happens now, but instead I make a call instead of actually inhaling a billion calories In chocolate) I belive the above photo says it all. There’s also a few that are more colorful (courtesy of BB in full meltdown mode) that I may or may not post… we shall see how I feel at the end. 😉 I don’t care how much they hate it or how many shots featuring BB flipping me the bird I have to go through, I WILL get a picture of this moment damn it, if my life depends on it. We made it through church. All kids did amazing the entire time AT church, it’s before and after that leave much to be desired. BB decided that he was going to “show you mommy” by making a quesadilla in the microwave and then wiping the pooled cheese grease all over the front of his nice button down shirt that took me 20 min to wrangle him into. Lucky for me I lost my last “give a s@$!” about 30 min prior and drug his unhappy but to church in his greasy shirt. Atleast it was a NICE greasy shirt, and not the 4 days worn/dirty angry birds shirt I’d been trying to pry off him since Friday. Thank you Jesus, miracles do happen every day, yes Virginia there is a Santa clause, tooth fairy, easter bunny and thank GOD BB is wearing a new, nice , clean cheese greasy shirt to Easter Services…. we got home with most of our wits about us. I fed kids food, at my lunch and now we are off again. This time to visit our sweet “German Grandma” 97 years young and still going, despite the scare she gave us this last summer. So for now, Happy Easter, Jesus lives. Love you all… and ps I need to invest in stock of Duct Tape 😉

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Posted by on April 5, 2015 in Uncategorized

 

Awtism awareness. Spread it like a fungus.

and here is another… i want this shirt BTW

Laughing Through Tears

This weekend was World Autism Awareness Day, so of course I went out to promote some awareness.  That is if dragging my autistic kids to the mall because I desperately needed new shoes and then letting all the other shoppers watch as they screamed for smoothies at the top of their lungs, rolled around on the floor with their feet in the air, almost lost their fingers trying to wedge the automatic doors closed, bellowed “Pee pee in diaper! Pee pee in diaper!” to the entire sportswear department, and groped the legs of various random strangers could be considered promotion, then yeah, I promoted the hell out of it.  I assure you, everyone in the Nordstrom wing of the mall was very aware of us.  I spread that sort of “awareness” on a daily basis.

I just doubt that anyone is aware that it’s autism.  Mostly because I never…

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Posted by on April 3, 2015 in Uncategorized

 

Are We Aware Yet?

Stumbled on this blog through felloe blogger Autism With a Side of Fries on FB this am, after getting BB on the bus and practically throwing LB at his (it was THAT bad people, i am so not making this up!) all that to say, i couldnt have found this blog at a better time! love their hilafrity, honesty and tact. love this post, hope t see more from them! Have a great morning y’all!

Love,
Mama C

Laughing Through Tears

Well, we spent the entire month of March talking about how April is Autism Awareness Month, so let’s get this show on the road, shall we? People are looking to us, The Autism Community, to see what we want them to do. Do we even know? What do we want the rest of the world to learn about us and our children? How can they help us?

In Spectrumville, every month is Autism Awareness Month. What do we do with all of this wonderful, endless awareness? Well, I submit that we start by reviewing a few sticking points first.

Acceptance: The other white meat. A lot of people have been very vocal about the need for this. The problem is, a whole lot of other people think that “accepting” autism means that you are just giving up. And giving up on your children is… well, unacceptable.

I think what we…

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Posted by on April 3, 2015 in Uncategorized

 

Thank you Cancer….

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When I was in highschool I was befriended by this loud outspoken, tall, beautiful girl, who happened to have a black belt in Karate and decided I’d be  a good friend to have.

My mother is a PEDS ICU nurse. We found the church we went to through a patient’s family. This beautiful girl who passed away at 16. Her mom invited my mom to church. When I came to youth group I was shy, scared and lonely. So when this amizing girl, best friend of the girl who lost her battle. Who was three years older than I, approached me, I was in awe. She taught me Karate, modeled what it means to be a good friend and advocate and gave me the beautiful gift of friendship.

Fast forward a few years. Sam and I had stuck together for the most part. She took a slight hiatus from church, had gorgeous twins girls at 19 which was a bit of a scandal at our church since one of the associate pastors sons was the father. But she took it all in stride. I found myself in a similar situation at 20. Pregnant, scared, hating myself. But did Sam judge me? No. Did she yell at me? Maybe a little. But mostly she loved  me. I don’t know what I would’ve done without my beautiful fearless friend. She was the photographer at my wedding, my best supporter. When her girls were about one, Sam started having awful back pain. She went to the er a few times but was just given pain pills and sent away. She had no health insurance. When her girls were a few years older she met an amazing man and was married in January of 2006. Shortly after she married she had a beautiful baby boy. The entire time from onset of pain to her son’s first birthday Sam suffered. Her condition got so bad during pregnancy doctors finally took notice. By now she had military coverage since her hubby was a naval submariner. He was gone 6 months of the year in 3 month chunks. During one of those away times Sam’s doctors decided it was finally time for some more conclusive testing. She had no help so I packed myself and my 2 year old and 6 month old on a greyhound bus and went to help her for 10 days. During that time I cared for my sick friend, laughed, cried, watched way too many episodes of Scrubs and got the gift of being there for my friend. We had some amazing moments, some scary sad moments. But those will be there forever and for this I guess I have to say thank you to Cancer. Because that was the name of the culprit, the nasty awful thing that eventually stole my beautiful friends life. CANCER. Sarcoma, actually. A week after I went home, Sam called me. She was in tears. The results were in, her doctor asked her where her husband was and said it was time to bring him home. She wanted to wait to tell Sam when Josh was there. But in true Sam fashion she demanded answers. She wanted to know, so she could make a plan and be there for Josh when she had to break the news. Selfless, always thinking of others, that was Sam. When I got the call I was with a group of church ladies at one of their houses having a play date and chatting. I excused myself and took my call outside. CANCER. A mass the size of a peach on her spine… more tests. Josh was flown home immediately. A few days after that Sam had a Pet Scan. The medical staff injected special dye into her body that would cause all of her tumor to glow when exposed to some kind of radiation it think. Well, what they thought was a mass on her lower spine turned out to be EVERYWHERE. In Sam’s words “my entire pelvis and some of my lungs and other parts lit up like a frigging Christmas tree!” I sat down for that one. I asked her what the plan was. There was ALWAYS A plan. This was Sam!  Fearless and flawless and beautiful. Surely she would beat this! And she tried, oh how she tried. She fought with all her might. When her doctor said (after a couple rounds of chemo and radiation) to go home and get her affairs in order bc there was nothing they could do for her, she had maybe 6 months. She looked at them and said “F&%$ you! I’ll go out on MY OWN terms!” She bought herself another year or so of good quality life with sheer will and a special diet she read about. In March of 2009 my sweet friend, my beautiful, amazing, warrior lost her fight to cancer. We stayed in touch over all those months. I never got to see her again in person. She never met my youngest son, although she demanded I call her when he was born, even if it was 2am. Thank god he was born at like 11am. Sam and Josh bought a home, she painted it and remodeled it. She ripped bushes out at 7am and called to tell me about it. She lived her life fully and fearlessly until she just had no energy left.

So I guess i wrote all this to say, Cancer taught me a lot. It taught me to cherish moments, cherish life. Cancer taught me that even though it crushes someone’s body, it can’t crush their spirit, not truly. Because i know Sam and she’s in Heaven right now, singing and dancing like a loon  and probably helping Jesus pick new paint for his walls. So thanks Cancer, for teaching me to slow down and also for letting me know you can’t ever truly win. Love conquers all. Sam lives forever in my heart and I’m the Mother and friend I am today bc of her example. My favorite song is “The Words I Would Say” by the Sidewalk Prophets, the lyrics are things Sam and I said to eachother on a regular basis. I listen to it all the time, especially when i miss her and don’t know whay to do in a situation. So thank you to Cancer and to Sam, I love you sweet one, see you when I get there.

Love,
Mama C

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Posted by on March 27, 2015 in Uncategorized

 
 
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