May 30, 2010

Bigger Stronger Wiser Kinder

(Note: The first paragraph of the following post was saved as a draft in April, I was too steamed to finish it, and so now that things have cooled down a bit I'm back.)


Since it is Autism Awareness Month, I am going to post more frequently about Autism than normal. I do have a lot to say on the subject so bear with me. We got Gabe's IEP (Individualized Education Plan) today from the school district, it looked okay, they do a pretty good job, with exception to the fact that they referred to Gabe as "Jonathan" TWICE! What the...? That makes me wonder, did they just copy and paste from another child's IEP, or are they thinking of similarities to another child when making Gabe's goals, or have they just lost it? I have read the horror stories of other parents of special needs kids fighting tooth and nail for the best possible services. I had a fight of my own in our last school district who was sorely under-funded and flat out told me biomedical treatment for Autism is just "crazy and doesn't work" and "don't listen to anything Jenny McCarthy has to say". WOW! I am not some aimless follower. I have researched and read, and read, and then read some more. Is everything Jenny M. says gospel? No. And she flat out states that those treatments may not work for everyone, but they worked for her son, so to have her son feel better, to engage, to recover...Why would you not want to share that information. I would/am shouting it from the rooftops. I know certain things have worked for my son, so I'll always be vigilant to improve his life. Both of my child's lives for that matter. It irritates me so that everything has to be so black and white, and the gray is just discarded. Well, that was quite a tangent.

Now May and a little less angry, but still not complacent, I will continue. Gabe's team and I are not on the best terms. We are cordial, and we'll leave it at that. Gabe (or should I say Jonathan) only has one more session left with the school district then we are done for the summer, they only offer summer services to kids they feel will severely backslide. Anyway (teeth grinding). I bumped Gabe's therapy time up in private services instead of fighting the morons in the district for mediocre services. Mean, yes. But when it comes to my kids....you understand I'm sure.

So, I've got to change gears here and flip this post so it ends on a more positive note. When I started this post back in April, my intention was to write about some of the "gold nuggets" I learned at the PACE Immersion workshop back last November. At the final session (parents only) we discussed as a group what we had taken away from the week. I think one of the most powerful messages for me was that as parents of children with special needs, we are in survival mode. Our intuition is broken, because frankly, we are just trying to keep peace in the family, make it through the day, or meal for that matter. Our barometers are going nuts constantly because we are in information overload. So for me to hear that and that I was doing okay was a great comfort. Not only did I learn how to  better parent Gabe, but how to better parent my NT child too. Here's a bit I took from the experience...

-Don't try to control behavior. That will always lead to more stress, more meltdowns, more, more and more. Sometimes, you have to allow the child the chance to work through the situation and as a parent you have to allow the tantrum so you can connect with the child on an emotional level and let them work through their emotions and find comfort and closure.

-Too much information can be paralyzing. Been there, done that. There is so much out there on treatments of Autism, ABA, DIR, RDI, DAN, OT, ST, PT, and SOS!!! Finding a jumping off place can be terrifying. What is the right way? I think the only right way is what works for your child. No child with Autism is alike, so gray is all we know as consistent. It's tough right after diagnosis when you've cried for 72 hours straight, given an apology, a packet of 300 resources (along with a good luck) by a team of experts and expected to line it up, ASAP. After all, it has been pounded into your brain the last 72 hours that early intervention before the age of five makes the greatest impact.

-Don't avoid the chance to connect. That is, connecting during the hugs and tickles, and during the tantrum. With reassurance, or deep pressure, or whatever it takes.

-Let the child tantrum, don't stop it, so they can deprogram and work through the emotion then help heal the trauma. This was a hard, still is a hard lesson. Patience, oh my so much patience. But our hour long tantrums are now down to 5 minutes. It has been a long hard road, but so worth it. And Gabe is learning how to feel and deal with his emotions.

-Talk less, teach less, and initiate less, so there is room for the child to do it. If I'm always labeling and teaching and asking questions, why would Gabe even try? Especially since Gabe has apraxia, it takes him a long time to answer, ask, or even speak. I had to learn to be conscious of that; it took the team telling me I was doing it for me to realize I wasn't giving Gabe the chance.

-Give Gabe what he needs, not what he wants. Enough said.

-Gabe is telling me everything I need to know without saying a word. This always makes me cry because it's true.

-And lastly, as the parent you have to be Bigger, Stronger, Wiser, and Kinder.

Here is the website for PACE place if you're interested.  It was worth it.
http://www.paceplaceinc.com/

May 27, 2010

Questioning Judgement

"What would you do differently if you knew nobody would judge you?"


I recently read this question in a book and felt compelled to blog about it. To answer this question I have to break it down by decade if you will.

Teen Years/High School: I would've been less of a follower and more of a leader. I would've put my safety above fun. And the advice I gave my little sister when she started high school, be nice to everyone, treat everyone well, despite the "cliques" because in 10 years it won't matter one bit and you'll have a lot of good friends and will feel good about yourself knowing you were kind. And sometimes, most times, in high school, kindness is an urban myth, but can mean the world to someone. I will confess, I was a mean girl in high school; one of my biggest regrets. That's all I can say to that, I've done a lot of apologizing to people since high school, some have opened their heart again to me, and some, never will; that is my loss. Glad to say I'm not a mean girl anymore. I'm a big believer in Karma, had my share.

My twenties: Lord. Whew, glad those are over! I would've slowed down and put the priorities in front of the fun. 'Nuf said there, still too fresh, having flashbacks....

Now, in my thirties: I think for the most part I live a good life, I'm honest, I try, and I don't care much about what people say. That being said, I still cover my tattoo, I still put on makeup everyday (yup, really I wear makeup everyday, I know you're all in disbelief, I probably need a few lessons), I put the "What? Is my Autism Showing?" shirt on my son when we have to do some things in public that I know are bound to evoke some behavioral eyebrow raising from other "mommies", i.e. going to the gigantic indoor play park, or wearing the connector in public, or even going to the grocery store, I make excuses about not going out with friends because some days I'm just barely holding it together. And here's the biggie, I lie, and say, "Oh that's okay" when it's not. We all do that whether it is just to get past whatever it was, or not to be judged about being hurt, or let down, or whatever it may have been. I know you've done it, don't hate!

I think society has put too much pressure on what "normal" is that being unique either makes you a star or a loser, per se. Couldn't we all be judged by the kindness we show others rather than by the car we drive or house we live in or clothes we wear? I hate, hate, and hate labels. Being a mom of a child with an "autism label" leads people to judge us before they've even met us. I don't know how many times I've heard, "Wow, Gabe has Autism, he seems so normal." Yeah. Don't even get me started on that one. I just quickly excuse myself from conversation or tend to my abnormal son. Why can't kids just be kids, teens just be teens, and adults just be adults? I suppose it's really hard for people to feel comfortable in their own skin, I admit, I waiver. Our life is just full of teaching moments, and if we never judged or felt judgment I suppose we'd never know how it makes us feel inside and why we shouldn't do it. Sometimes we have to lose everything in our lives to really know what's important, how strong we are, and how much God will take care of us if we only let him.

May 24, 2010

Blinded By the Light

Summer has indeed arrived, with a bang.  That is par for the course here in Minne-snowda it seems.  We're in hot, humid 90 degree weather when just last week it was 40 degrees.  Humph.  Anyway, I'll take it any way I can get it.  I do enjoy the cold weather though, I would not like and do not like the humidity year round, that would make for a very crabby Cari.  And I think I have some sort of allergy to the sun, which explains my year round pasty-ness.  My suntan is indeed broken.  Just doesn't happen anymore.  I chalk it up to years of sun damage as a child and teen.  We had a swimming pool growing up and my mom was a sun worshipper, the only time we wore sunscreen was if we were already sunburned.  So I was always a beautiful golden brown.  In high school, "laying out" became a daily past time and growing up in the south, there was ample time to accomplish it.  When winter came, I hit the tanning bed.  But now I can't tan if I tried.  I'm a hat wearing, shade loving, SPF 70 kind of girl.  In fact as I am sitting here in the direct sun (lathered up in 70) on the deck watching my kids play in the sprinkler I am breaking out into red blotches as we speak, itchy things too.  Is there such a thing as a sun allergy?  Ghostly as I may be, I won't give in to societal pressure to be "tan".  I shall continue my pasty reign with the likes of Nicole Kidman and Taylor Swift (trust me only likening myself in shade not beauty). 

So I appropriately renamed this post, "Blinded By the Light" in reference to my skin tone, or lack thereof, instead of  "Summer has arrived'.  Veered off topic as usual.  I had intended for this post to reflect the welcoming of a new season, instead because I can rarely hold a steady thought for more than 3 minutes it is about tanning.  Only in BOMS (Bubble Gum....) will you experience such randomness.  Apologies friends. 

Here I'll end, I need to find a slice of shade before I turn polka-dot!  Enjoy the days of summer!
Three things cannot be long hidden: the sun, the moon, and the truth.

Buddha

May 20, 2010

GF and CF and SF oh my!!!

We are almost there, GFCFSF.  I know a lot of you who follow know exactly what I'm talking about so bear with me as I explain to those who may not.  Gluten Free, Casein Free, Soy Free, aka THE DIET.  The diet has successfully helped hundreds of thousands of children with Autism and recommended for those with Celiacs disease.  Basically,(and I mean basic) most kids with ASD have gut issues, whether they be severe, or fairly mild in Gabe's case like loose stools and undigested foods (undigested food can lead to malnutrition or a starving brain). Research shows that people with ASD have an abnormal immune response to the protein in casein as well as the proteins in gluten and soy.  The gluten and casein (casein is the protein found in all mammals' milk, its even found in most soy milk products) act as a opiate and put the ASD kids in that trans like state, little engagement and lots of stimming.  Another clue that it acts as an opiate is that they just can't get enough of it.  Gabe will eat an entire pack of cheese if I let him, and when he can't get it, he goes nuts, kicking, screaming, and will break into the fridge multiple times to get it.  I'd liken it to a drug addict not getting his fix.  He can be like that with fruit too, which makes me think there is a yeast overgrowth issue too, but I'm not ready to cut out fruit just yet.  The diet isn't just a whim and it isn't for the faint of heart.  I've been weaning Gabe off Gluten and Casein for months.  I have studied it extensively and the science behind it is really amazing.  It works for some kids and not for others; but I see a difference.  Once you start docs say you should stay on it for 6 months to see full results and one slip, or one bite can put you back months.  I have been documenting carefully what he eats every day, the amount, and the stools for about a year.  Lovely, I know.  The first time I was tossing around the idea of doing the diet I did an experiment and limited dairy for 3 weeks, then Gabe had a cheese stick.  After he ate the stick, he sat in front of the T.V. comatose, I don't even think he blinked.  When we have the diet in place it's like a veil is lifted.  His expressive and receptive language is phenomenal, speech abounds, and he engages play.  Last week he actually pretended to be a frog!!!!  Pretend!  Wow!  He has made some monumental strides the last couple of months, not 100% attributed to the diet, but that certainly is a piece of the puzzle.  He has been a great sport, he doesn't even ask for milk or yogurt anymore and we can drink it in front of him.  My hardest switch was pizza.  The kid is a pizza junkie, but I found some GFCF frozen dough, my homemade stuff didn't turn out so good, (not digging the rice flour) and some GFCF cheese that actually semi-melts and doesn't taste like cardboard.  So he's a happy camper and even Audrey eats it.  I decided to go Soy free too, as 90% of kids with ASD have soy allergies, most soy product had casein anyway, so why do it.  I've got most things switched over, flour, sugar, vitamins, no vinegars, but what was interesting is that crayons, toothpaste and playdoh all have gluten too.  I'm still trying out different flours to find one that will work most like regular flours.  So for now, we're living a flat food exsistence.

Food has such a big impact on our bodies.  I like Jenny Mac's analogy, if you don't think what we eat/drink affects the brain, walk into any bar in America.  I already knew food had an impact on my kid's behavior before Gabe was diagnosed.  I don't think sensitivity has to be a rash, or swollen something or another; but I cut out the HFCS, high fructose corn syrup, and artificial coloring, because my children act like monsters when they have it.  Food can leave its mark by headache, fatigue, tummy ache, energy boost, or make us feel like one hundred bucks.  I'm excited to start this new journey, and am ever grateful to my fellow bloggers living GFCF that have inspired me and taught me a few things too.

You can find more information on the diet on http://www.talkaboutcuringautsim.org/ (TACA) or http://www.generationrescue.com/ .

"I attribute my success to this -- that I never gave or took any excuse."
– Florence Nightingale

Dear Readers:
I apologize for my insane usage of parentheses in this post, but I am too tired to grammatically correct this post.  This apology will have to due, cheers!

May 17, 2010

Nanny 911


"The phrase 'working mother' is redundant."
— Jane Sellman

I have been fortunate to be a Stay at home Mom for a bit over 5 years now, so blessed! I have worked part time to keep my sanity fortunately, although I use the word "sanity" loosely.   But now here I go, I'm jumping in feet first and going back to work full time. I was just telling my Mom tonight, when you surround yourself with good people and live positively, all will come full circle. Things are falling right into place, exactly the way they are meant to be. Since the divorce was finalized I have felt such a weight lifted. I feel like I can breathe again! I put my future in the hands of the universe/God and just trusted that it/He would lead me where I need to be; it seems like when I take charge and make decisions something goes awry. So a job presented itself that I love and can be flexible so I can still take Gabe to therapy, a too good to be true Nanny became available and recommended and a new home is in our not too distant future. Blessings are just pouring down on my family! I'm trying so hard not to look too far into the future and plan it all out, a fatal flaw of mine, but rather I'm attempting to allow life to present itself in the beautiful way it can unfold the perfect answer, the small miracle, or the life changing path on my journey. The letting go is SO freeing. I let go of guilt, let go of not good enough, let go of failure, let go of negativity and the negative people around me whispering in my ear. When you let go, when I let go, I don't feel that pull in 100 directions, only a serenity by the path I am on; it doesn't mean I'm not cognizant of my surroundings I just don't see the end of the path, so there could be twists, turns and mountains to behold. Now I'm looking forward to going back to work full time, and feel safe in leaving my kids while I'm away. They need the break as much as I do. Funny that work is a break, but let's be real here, for all of you who stay at home full time, working is like a freaking vacation. Now my kids will have someone who can give 100 percent of their attention to them, they'll be in heaven. My time won't have to be split between chores, paperwork, errands, therapies, and playtime. I feel strongly that I can balance all of this now. I couldn't have said that a few months ago, but all of my hard work is paying off.  All the seeds sown by sleepless nights of paperwork and Internet searching are now growing to fruition. This last year, I knew this day would come so I try to cherish all the little moments, I tried to engrave in my memory the small size of my children's hands, their chubby cheeks, goofy laughs and funny moments. It's already gone by too fast, and now that the wheel is turning, it only speeds up as time moves along. Those days that seemed like an eternity and I couldn't wait for bedtime now are only a minute glimpse of a week, a month, a year gone by. So here I go, there's no stopping me now, and I'm overjoyed at all the new possibilities life has in store.

May 14, 2010

Hello?

Hey friends and loyal readers...I know you're out there?  I am the featured blog on the website Top Mommy Blogs in the Single Parent section.  If you enjoy my blog I'd love you to vote for me on the TMB website.  Find the Top Mommy Blog Button on the column on the right in my blog and simply click to vote.  It's that easy!  Thanks always for all the kind words and support:)

Cari

May 13, 2010

Signed, Sealed, Delivered....

And so it ends. Well at least the marriage portion. Been going through the big "D" and don't mean Dallas. Sorry my country roots took hold there and I could NOT resist. My divorce was finalized yesterday. Bittersweet. One certainly doesn't anticipate divorce, or foresee it as you are reciting vows in the glow of the candlelight on a beautiful September evening. But here I am, Ms., Miss, ready to mingle, who knows. I really don't want to blog a great deal on the subject, it's still sinking in. I must confess it was terribly nerve racking to be on the witness stand in a courtroom semi-full of other divorcee-wannabes answering questions about "irrevocable breakdowns" and such. Luckily for me, I was 2nd on the docket and didn't have to sit through the Olson's fighting over fishing tackle and baseball mitts, I kid you not there was a whole discussion prior to court including their over paid legal eagles arguing for them over fishing tackle at 200 bucks an hour. Anyway. Done. I feel good about it as aforementioned in post previous.

On to the good news....Gabe got accepted into Autism Day Treatment in the fall, AT school choice number one! Overwhelming relief. I am so excited; this will be great for the kiddo. Unfortunately, his OT called me at home tonight and told me she and his Speech Therapist were going to a new center in four weeks! Gimme a break now! I was crushed, but understand and fully support their decision. They are like part of our family. I would follow them in a New York minute, but, we would've been leaving there in the fall anyway, so I'm torn. So that is the decision that now lies before me. Stay on where we are and introduce new therapists only to leave in the fall and be introduced to more new therapists. Or, follow our dear miracle workers to a new location and leave in the fall to new therapists? It's a toss up. Of course the OT and ST can't say follow me (wink), although they'd be overjoyed if so, I just want to make sure Gabe has an easy transition. Any thoughts? I’m welcoming opinions on the matter as I have only a smidgen of brain matter left and must reserve said smidgen for sorting of laundry, writing grocery lists, paying the occasional bill, and of course driving the “therapy run” 4 times a week in rush hour.

Well I will put an end to your misery of this random and mind numbing post and go get some much needed sleep, I usually don't allow myself to blog after midnight (hah, hah) so forgive the spelling and grammar as it goes from bad (the norm) to worse.

A blessed night to you all, I hope you awaken to a new door opening, a new dream fulfilled, and a full heart.

May 09, 2010

Mother's Day

Mother's Day. Perfect weather, sun on my face, no to-do list, kids fast asleep. My babes are giving me a terrific Mom's day gift right now and snoozing away in the car, in the driveway at that! We had our annual brunch, sans the Race for the Cure this year (to be substituted now annually by the Autism Speaks Walk) and the kiddos are pooped. I pulled in the drive, cracked open the windows and pulled up a chair with ye ol' laptop for some Mother's Day confession blog time. I have a whole new perspective on Mother's Day this year. I've seen being a Mom through my mom's eyes as a daughter, I've been a pregnant mom, a mom of one child, a mom of two children, a mom to a daughter as well as to a son, a mom to a typical child and one with special needs, a mom with a husband, and now a single mom.

Being a Mom is the single most fulfilling thing I have ever done. It fills my heart and nourishes my soul. It brings me the most immense laughter and joy I've ever felt and can in an instant bring me to my knees, and wits end. Here I am almost a year later from the whirlwind of my circumstances, dizzy, confused, and bewildered. Daily, I climb the mountain a little more, hold my chin a little higher, feel a little less lonely, and see how God is revealing his great plans for me. Often people say, "I don't know how you do it", and often my answer is "I don't do it alone". It is by God's grace alone that I am standing and the love for my kids that keeps me going. Not for a moment will I allow myself to be overwhelmed by despair, because my kids need me, and they deserve a healthy, caring, loving Mother who will walk through fire, face the firing squad, or even make a complete fool of herself (i.e. going out in public after the 5 year old has done my hair, and I can't bear to break her heart by changing it). I WILL take care of me, because my kids deserve that. That elusive “mommy time” you may hear of, yet never get around to, is so very important. We need a chance to miss our kids; we need a chance to remember who we were before them, who we are because of them, and why we need them. If I lose myself when they are young, it will take me all the longer to find myself when they are older. I don’t get a lot of mommy time, but I think at the end of the day, when the kids are in bed it’s okay to read a book, or paint my nails, or scrapbook, or just be instead of doing laundry or dishes or cleaning.

I think most importantly, my kids deserve a Mom who is willing to choose happiness. In my parenting classes (court ordered staple of divorcing parents) we discussed the term "broken home". I loved the study that found children from "broken homes" with parents who are amicable are more likely to be well-adjusted and emotionally stable than children who come from 2 parent households with fighting and name calling who are "staying in it for the kids". For awhile I had carried around some guilt about my decision to leave my husband, but I have followed God's guidance and know without a doubt I did the right thing for myself and kids. I will be able to look them in the eye and defend any action or motive with a clear conscience and say I did all I could honestly. They deserve to see a happy Mom. They deserve a Mother who will parent, not just provide. So now in a week, it will all be said and done, and that chapter will be closed. At least I can see that even though my marriage was a lie, I got two beautiful miracles out of it, and would do it all again because I can't even fathom a world without those two beautiful babies in it. How did I get so lucky? My bank account may be meager, my home, my car, my "stuff" may be sold, but I truly feel like the richest person in the world.

Thanks Audrey and Gabe for letting me be your Mommy, xoxo.

"A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie."    ~Tenneva Jordan