“This Sucks”, and the Bad Mommy Blues..

It was “one of those days”. The sun refused to shine, and maybe I had not had enough sleep or allergies kicked in or whatever, but I woke up down and out.  I rarely do depression anymore, so it was hard to sit at work so off-kilter. We still have more than a week for school left for both kids, but they are DONE with being couped up. (Yea so am I!)

Work was hard, freelancing was hard, but I managed those, and then I got out of work and put Zoe, who may have an urinary tract infection, in the tub. (No car, no doctor, c’est la vie.)   She had a blast and I let Amelia mind turn to mush with TV.  We’re in the home stretch of summer, good luck getting work done!

I’m relaxing, still down, and for NO REASON that I can see, Zoe lets loose with a 45 minute tantrum- a real doozy, headbanger type of deal.  I did my level best to do everything I could to calm her, to no avail.  At the end of this, she was doing a “I’m ok, but can scream when I like!” deal, and I was reduced to a mass of jello sitting on the floor crying my ass off with “why me?”, “I’m being punished”, and “I’m to blame for her autism”.

Well, so much for spiritual optimism and my hope’s in God.  I sat there, and I KNEW this was a “what about me?” moment.  Ok, who’m I kidding? It was a “what about me” hour night!

Today I turned on Joyce Meyer and got an earful of how we choose our feelings and don’t give into the negative thoughts or lies from the dark side.  (Surely, “I gave my daughter autism” is a lie, right?  And, “Her condition is my punishment for something” is actually hubris, isn’t it?)

So, no sympathy for me, just an epic, painful fail of a night. I’m not bitter today; it happened. It will, I guess, from time to time, but it’s made me think: Do I really still consider this a punishment for something in my life?  Not on the surface, and not even below the surface, but way, deep down in my heart, do I feel like the cause of my kids’ disabilities?  Maybe I do.

As I plod this course of deep – DEEP self-improvement, the inner me might get a little scary.  How hard do we, any of us, look at what’s really beneath the surface?  And what do we do with the ugly when we find it?

Acceptance, Once Again

It’s time to come clean: I haven’t been all that content, or happy, or joyous lately.  Chalk it up to the kids being home all day downstairs, while I try to work in “peace” upstairs, and hope and pray the new sitter is OK on her own.

The result: It’ s been a long grueling summer, and there’s a long way to go yet.  And, oh yea, I’ve been sort of depressed, like weeping on my sleeve, “oh poor me”, “why God why” depressed.

Then I came back to myself and figured a few things out.  My depression was the cause of my guilt being cleansed out and another level of acceptance taking it’s place.

I don’t want you to get this wrong: I love my kids.  But the temptation was too great: What if they were typical, and I thought on it for a second, and Jesus, the pain was crushing.  Then I spiraled into despair.  Why can’t Zoe just say what she wants? Why can’t I understand Amelia? Why can’t this just be easier – NOT easy, just easier?

You know what I can’t stand?  I can’t stand when we take the kids somewhere and after that, all I get is, “Man you guys have your hands full!”, “Wow, how do you do it?”, and “Are you ok today? I see what it takes to raise those kids?”  That makes me feel like my kids are horrible.  I know that’s not the spirit or intention, but it does feel that way.  Then that leads to, “Well, they’re not that far behind, so it must be my crap ass parenting skills.”  And that’s an easy sell for me, because in addition to being a woman, an Italian, raised Catholic, and being a working mom, my natural acumen for guilt is further amped by the fact that before I met Chris, I did not want to have kids.  Babysitting my way through high school along with already having nephews & nieces by then cured me of thinking kids were anything but mostly a challenge. Then I dang went and fell in love, and the rest is history.

But here on this Christian path, or really, on any Godly path I’ve discovered, guilt is only for the bad things you’ve actually and mostly intentionally done.  Guilt is not for “I tried my best and failed” nor for “my kids are not perfect”.  And even real guilt is disolvable if you’re a real Christian.

Once I washed away my guilt (and it took all those tears), new tears came, the tears of “as good as is it gets”.  THAT is a whole level of acceptance all unto itself.

Then, yesterday, in the sermon, my pastor mentioned my child repeating the words and action, verbatim, to “Ice Age 3“.  For him, it was a blessing, and that opened my eyes.  As a parent, it’s just that darn echolalia.  For him, it was her ability to memorize, to entertain, to throw herself unflinchingly into performance.  At that, more tears fell (hopefully we’re done with them), but this time they were tears of peace.  My kids are what they are, and they are good. God made them perfectly, and I get that…

…until the next time I don’t.

Do you struggle with your child’s struggles?  Even if he or she is not disabled, is a consistent poor showing at something cause for pain?  And is guilt easier than acceptance?  How do you cope with it – I could really use some pointers!

Image: djcodrin / FreeDigitalPhotos.net

Book Review: Get Out, Explore, and Have Fun!

For those of us with children who have sensory disorders, autism, or Asperger’s syndrome, you know how difficult a day out can be.  Yet, if you are like me, you just know that bringing your child outside will enrich them and make them happy.  How do we bridge that dilemma?

Author Lisa Jo Rudy has written a book aimed at helping parents like us solve this very problem. Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities shows you exactly how to discover activities to fit your child, how to prepare your child in advance, and how to promote inclusion in all kinds of places. The book is also a valuable resource guide, listing dozens of places and activities, from faith participation to summer camps, from museums to concerts.  You name it, it’s in there.

Each chapter comes with a tip sheet at the end and there are even resources for administrators and directors of the various activities.  Finally, there is a guide for making the argument for inclusion to groups that do not (yet) support it – and how to know when to walk away.

When I read the preface, I felt very moved by this book.  I am a firm believer that getting Zoe out there will help her learn to process and integrate.  That’s why we took a chance and took her to T-Rex restaurant in Orlando, a restaurant with lights, creatures, and lots of noise – not to mention the food.  It was a struggle at first, but the end result?  Judge for yourself:

I highly recommend this book to any parent who wants to stimulate their environment-sensitive child.

Patience, Motherhood, and #Autism: OY!

I have had it. I mean, when Amelia was 4, we had already been putting her in time outs for a year. It worked (for another couple of years anyway)!

But here’s a parenting challenge: How do you punish a 4 yo who does not speak (much), will not take direction, and has legitimate sensory issues? I mean, I only painted my house in the winter (beautiful colors no less) and now it’s all covered in pen, crayon, and pencil. (No, I did not see it originally because I am no longer 3.5 feet high. 6 feet only, yes, but still I can’t see that low!)Is there a book out there somewhere? “Positive Parenting Kids with Autism”?

{NOTE: Do not start on spanking with me, ok? Did I mention she has sensory disorder? For a person who struggles inside their own skin (raising my hand wildly), spanking is cruelty, IMO. Plus I could never bring myself to hit my children when I’m calm, and we all know you can’t when you’re upset. So move off this topic.}

She is becoming unruly at times. She won’t wear a diaper at home, now it’s true she does have a small blemish on her tush, but still! One time I let her go and she pooped all over her quilt. And a tantrum for no ice cream? The movie’s end? Not being let into a room? She doesn’t sit often at the table either, who knows why she does that.

Anyways, I grow weary of the battle. It’s not completely her fault; her disability caused tantrums that she was smart enough to use other times on indulgent caretakers, lazy family members, and tired and/or sick mommy and daddy. I’m determined to find a way that doesn’t kill me. (Just so we’re clear, the thought of consistency, schedules and the like does kill me. )

I love her so much. She has so much awesome potential and she’s maturing her abilities very well this year.  But she needs to learn behavior, respect, or as much as a 4yo can handle.  Is that too much to ask, in the last few months before she’s 5?

After months of having my man by my side (miserable though he was), I will be alone with the sitter tomorrow (aide is in training).  So it’ll be a scary scary day, pray for me…

The sweetest sound in the world…

…is the first time your 4 year old says her own name! We were driving home from a “breather” type late evening trip, and we heard “Zo-EEE!” from the backseat. I thought it was Amelia, but it sounded a bit off. I look back and there is Zoe saying her name over and over.

Chris and I did a happy dance (and we really needed one too!) Just beautiful!

Book Review: Autism & Alleiuas

A few weeks ago, I was sent a book called Autism & Alleluias by Kathleen Deyer Bolduc.  This awesome little book is more than a devotional.  Ms. Bolduc relates her struggles and triumphs in raising her son, who has autism and finds answers in faith.  She not only shares life stories, she also writes beautiful poetry as well.

But I’d like to tell you how this book encouraged me.

I had a great weekend this Easter.  I’m experiencing an  uncharacteristically “great” time in my life right now, and this holiday was no exception.  It’s been a while since I even celebrated Easter with anyone but my kids, husband and mother-in-law, but a new church, an egg hunt, and spectacular weather put the icing on the proverbial cake. I went to bed even pleased with the girls’ behavior and lay down to read.

All of a sudden, I was struck with despair.  You see, having 2 special needs kids has lately and infrequently made it really difficult to be around typically developing kids.  I love those kids who belong to friends and family, and I’m grateful that they are healthy and whole, but it sometimes feels like my family’s struggles have been underscored in yellow highlighter when I’m with them.

Yes, I’m fully aware how petty that is of me and no, I wouldn’t change my kids for all the world, but I want to be honest about the suckitude I sometimes feel.  And, of course, when things are great, especially in the spiritual realm, darkness tries to pull the wool over your delighted eyes.  So I sat in bed, crying after a near-perfect weekend, and hating myself for it.

Then I remembered this book and thought maybe I could find some consolation. It being Easter, I read the chapter named “Resurrection”.  In it, Ms. Bolduc encounters a man who comes from the Lakota Sioux culture, where they consider special needs people and children as “gifts from God” to teach the rest of us compassion. They are all treated with respect in that culture.

That gave me hope and inspiration.  Don’t you ever get the feeling that as “advanced” as we are in this Western culture, sometimes we can be so backwards?  I have never felt so passionate about something as the rights and respect of kids with special needs… and let me tell ya, in case you haven’t noticed, I’m a pretty darn passionate person.

My recommendation? Run right out and buy Autism & Alleluias.  Support the author by reading her blog.  Or meet her on the phone tomorrow at this free webinar tomorrow (Thursday, 4/8/10) at 2:00, featuring Kathy Bolduc, Ginny Thornburgh, and Bill Gaventa, titled “A Place Called Acceptance.”  Here’s a link to registration: https://www1.gotomeeting.com/register/400446400

Sadly, I have a commitment at that time and cannot go or else I’d meet you there!

Thank you, Kathy, for writing such an inspiring book and for sharing your journey with the rest of us!

Wear Blue for Autism Awareness Day

That’s it! Just do it if someone you know has or is affected by Autism Spectrum Disorder.

Be Not Afraid

And so the two of us begin our frantic search for our son. The hunt always involves escalators and elevators, trains and buses and airplanes. When I awake, always mid-search, my eardrums thrum to the wild beat of my heart, and damp sheets entangle my arms and legs.

Our son is moving away from home in six short weeks.

Joel, the youngest of our three sons, has autism and moderate intellectual disabilities. At 25, he functions at a grade school level, only he’s never learned to read or write or do simple math. He has no perception of stranger danger or the importance of looking both ways before crossing a busy street. Joel struggled with anxiety so high throughout his teen years that aggression was his most likely means of communication. For close to ten years, he cycled through a manic cycle every six weeks, which meant not only that daily melt-downs were the norm for two weeks out of six, but that no one in the house slept for those two weeks.

Intense is a word that comes to mind when I look back over the last 25 years.

Of course, there has been plenty of joy along the journey. Joel lights up our life with his zany sense of humor, his compassion for people who are hurting, his spontaneous prayers, his abandoned form of worship (sometimes he “breaks it down”—his expression for dancing—in the church aisle), his forgiving spirit, and his sweet smile.

Life with Joel has taken us deeper and deeper into that dark, creative place within—the place where new life teems just below the surface, waiting to break the ground in a riot of colorful blooms. It’s the place where Wally and I meet with God on a daily basis, because we’ve figured out it’s beyond our capability to parent this child completely in our own resourcefulness, energy, or sufficiency.

What a hole will be torn in the fabric of our lives when Joel leaves home!

I keep reminding myself that he’s 25 years old. He’s a young man. He doesn’t want to be with Mom and Dad all the time. He often pushes me toward the front door and says, “Time for Mom to go to work.”

“Sorry Joel, I work at home,” I answer.

“Time for Mom to go now,” he reiterates, letting me know he’s tired of my company.

What 25-year-old wants to hang out with Mom and Dad all the time? What 25-year-old male wants Mom wiping his face after dinner? Reminding him to put up the toilet seat lid every time he walks into the bathroom? Watching his moods like an investor watches the stock market?

Yes, Joel is moving from our home in six weeks. He’s moving to Safe Haven Farms, a community of choice for adults with autism, which is under construction at this very moment just 45 minutes from our home (www.safehavenfarms.org ). We joined the planning stages of this venture two-plus years ago. Wally’s on the board, we’re both on the parent committee. At Safe Haven, Joel will participate in meaningful work. He will help grow flowers, fruits and vegetables for the table as well as for sale at local farmer’s markets. He will have the opportunity to learn new skills on the computer in the learning center. He can create birdhouses, squirrel feeders, paintings, sculpture, or whatever he desires in the therapeutic arts center. He will help care for goats and sheep, alpacas and horses, and participate in a therapeutic horseback riding program (he’s been riding for 12 years and absolutely loves it). There will be four houses with four farmers in each house. Joel and his three housemates will help shop for and cook their own meals as well as keep their home clean and help with the laundry (Lord, help us!). The local church has already invited them to be a part of their congregation, with small group participation encouraged during the week.

I remind myself on a daily basis that we’re not losing our son. We’re finding our way into a future where new life is waiting to burst forth, in his life and ours.

I bet that’s what the escalators and elevators, trains and buses in my dreams signify. They’re all modes of transportation, whisking us into the unknown future.

You and I both know that the known world is always more comfortable than the unknown world. Plunging into the unknown is both scary and exhilarating.

A small framed painting sits on my desk; a colorful representation of a girl on a horse with a quote that I love emblazoned across it:

Be not afraid of moving forward. be only afraid of standing still.

I think—no, I know—it’s time for a new dream. A dream where Wally and I hop onto that train (or escalator, airplane, or bus) with Joel, tickets in hand, knowing that we’re accompanying him into the future of all that God has in store, not only for Joel, but for Wally and me as well.

Back Down to Earth…

I’ve been doing pretty well lately, in the Mom Arena.  You’ll recall that earlier this month I posted about melting down with the kids, and I have slid a few times since then. I decided a few things:

1. to give it all to God
2. to pray a WHOLE lot more
3. to do what all the support staff and therapists and a few very loving mom friends have advised

It has not gotten less hectic, but I am better equipped to deal with things.  For example, on Thursday I rediscovered the “joy” of holding and redirecting (over & over) my girl Zoe when she is melting down.  It took about 20 or more minutes and wiped me out, but it was worth it.  Today I employed the technique over a non-autism tantrum, this being the “I want the damn cookies NOW!” tantrum.

It eventually ended and I got back to work.  It’s extremely hard to work with these kind of disturbances, but you play the hand you’re dealt. Right now, I’m totally ok with it.

All this listening to the solid, experienced advice and prayer worked in my favor.  A comment was made by one person to another that would have set me screaming in the past.  (Or probably in January.)  It had to do with Amelia and school, and I weathered it. I’ve considered it and realized that the person made a statement without having enough judgment or experience with the situation to determine and thusly, I led it slide since it will in no way affect my child.

In fact, Amelia is doing very well in school!  Just wonderfully.  She got her quarterly report and improved in a few areas, as well as her enthusiasm and joy at being in school makes her teacher smile daily.  How awesome is that?  We are making strides on counting, sight words are her favorite activity, and she is reading with me at night.

Zoe, too, is making speech progress, almost stringing words together and making some progress in drawing, which is a biggie.  Yay!  Now if we could just get the dog to STOP pooping on the new carpets, life would be grand, lol…

Photos, Valentine’s Day Autism Respite

Many crafts and goodies were brought home, which were promptly destroyed or eaten by kids and dogs.  That’s cool, I got enough stuff anyway! They had a great time.

If you are in Lehigh Valley and have or know  a child with autism, please check out the Autism Respite Program hosted by Calvary Wesleyan Church in Bethlehem.  Loving people, experienced staff plus lots of volunteers, and so many goodies for your little one (and siblings) while you take a much-needed breather.

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