Oh, what a long strange year its been

Today marks the 1 year anniversary of my humble blog.

I decided to start a blog after stumbling upon 2 blogs written by some friends. Swoozy and Robin were my inspiration to begin my own. Thanks Girls!

I figured there is not much in my life that I consider taboo or off limits. I have always been an open book. I like sharing my story with perfect strangers. I also like reading the stories of perfect strangers. I am a blog-writer's best friend.

I also wanted a place where I could put down my feelings, my struggles, and my successes in raising my 2 extra-special boys.

To the new bloggy friends I have gained in the past year...thank you for making me laugh on the days when I was hanging on by a thread and for inspiring me to write and share more.

Post It Note Tuesday: The Sick of Being Sick Edition

This ought to be fun. I am sick with the green-snot-that-would-not-die that has made its way through the entire house, everyone except the dog, that is.

I'm guessing his days are numbered.

So, without further ado... My humble stickies.

A *sniff* Merry *Achoo* Christmas *Snort* To *Cough* You

Christmas 2009 here at Casa Stilwell was a little less than stellar. Sam, Noah and Mike were all sick with the green snot that would not die. But, we put on our happy faces and opened all the gifts the boys received from our families.

Sam sporting his new Spongebob Squarepants Snuggli

Noah received lots of new Dora the Explorer books

I love this picture of the boys happily playing 'together'

Noah enjoyed his new fishing pole and maybe now I can keep him from stealing Mike's real poles located in our bedroom.

Sammy and the monarch butterfly puppet

Bruce's parents lavished the boys with lots of fun toys this year. Both boys especially enjoy building the tower with the nesting boxes.

The toy explosion in the living room

I hope you and yours had a fun, low-key, snot-free Christmas! For us, 2 out of 3 isn't too shabby.

Preach It, Brother Linus!

Today I may not be a Domestic Superhero, a patient mom, a Proverbs 31 wife, or fitting into any jeans with single digits....but I am loved, forgiven, and infinitely blessed beyond measure. Merry Christmas to each of you and Happy Birthday to my Lord and Savior.

Post It Note Tuesday: The Blizzard Edition

I have recently run across a great blog by another wannabe Domestic Superhero (my term, not hers). SupahMommy hosts a weekly event on her blog called 'Post it Note Tuesday' where you can custom design your own post it notes saying anything you want addressed to anyone you want or no one in particular.

Since this is my first time joining in on the post it note fun I thought I would take out some of my aggression on our recent 24" snowfall.




Why not check out SupahMommy at her blog here and join in the fun!
You can customize your post it notes here

A Labor of Love

I heard this song on the radio the other day and was reduced to tears. I was struck by the truth of the words, the stark reality of what that very young girl did out of complete and unconditional faith, and the man who stood by her when he had every reason not to.

Lord, let us never forget and always remember to share your truth with those around us. You truly are the reason for this season.

Faces of Autism

My boys were recently included on a blog named Faces of Autism by a mom blogger located "across the pond" who writes about her life with her adult son who also has autism. Her main blog is Mother of Shrek and she started the Faces of Autism blog to showcase families raising children with autism.

Why not check it out. If you are a mom raising a child with autism or know someone who is you can contact Mother of Shrek about having your child showcased as well.

Dude, Where's my car?

Expecting a Miracle

Guess what?!

I'm NOT pregnant.

But my very best friend, Becky, IS!

Becky told her husband first and then me. I am so excited I can hardly contain myself! Becky and her husband Bill seem to be in a continuous moment of shock that I am hoping will clear up by early August when the little bundle of McKain joy arrives.

Becky is the one of the very best moms I know. Then again, she comes by it honestly. Her mother is by far one of the best moms I have ever known, second only to my own.

Becky has 2 older children, Katie who recently turned 12 and Adam who will be 7 in February. She is a bit bent out of shape feeling like she is too old to be having another baby at the age of 38. However, I keep reminding her that many women are just starting their families at that age.

Have I mentioned how excited I am?!

This baby will be at least 1/3 mine since Becky and I are so close and I ADORE babies. Especially the ones that I don't have to wake up in the middle of the night to feed. Becky knows full well that I will be so up in her business once baby #3 arrives that she can count on me to bring her meals everyday, clean the house (because I have OCD and love nothing more than to clean!), and rock the baby for hours at a time while she naps peacefully in her room. In fact, the only thing I WON'T be able to do is breastfeed the little darling.

I am thinking that is a pretty darn good trade-off. Don't you?

All I want for Christmas

is some peace, quiet, and sanity.

And maybe a large dollar amount gift card to my local wine store.

In my previous post here I gave some helpful guidelines on picking out a gift for a special needs child. It occurs to me that it would also be nice to outline some gift ideas for that child's parents. Some of my ideas may be a bit snarky, but what can I say, that's the way I roll.

The Do's:
1) A night out or even a night away from home and the craziness that is their daily routine would be one of the kindest and well-received gifts you could give. With this gift would be the watching of the child/ children yourself or enlist the help of the parent's other friends and split up the time. Maybe 1 couple stays for the evening and puts the kids down for the night and is then relieved by another who will stay the night and get the kids ready in the morning to then be relieved by another for the remainder of the day, and so on. Caring for 2 autistic children for an entire weekend un-aided is galant, but also exhausting, frustrating, and lonely. Trust me, I know.

2) A gift of luxury at a local day spa may be just the ticket for the stressed-out mom of any child, let alone one (or two!) with autism or other special need. The fact is, I can go a few days without a shower due to sheer exhaustion and fears that my children will injure themselves for the 5 minutes I am in the bathroom. The thought of a full-body massage, facial, mani/pedi, and hair cut/ style is enough to send me into a tailspin. If I were to receive such a gift I think I would lock myself in the spa room and refuse to leave. Actually I know I would, so you might not want to get me that this year.

3) A cleaning service such as Merry Maids is another gem of a gift idea. I can say with ease that keeping both boys entertained/ safe and maintaining a clean house is NOT easy. There are many household chores that do not get done until they absolutely must for hygiene sake. I do not struggle as much with this as many considering our family lives in a modestly sized condo and I enjoy cleaning. I know. Its sick, isn't it? However, when things get especially tense and the boy's meltdowns are coming down the pike at break neck speed I can tell you with certainty that the first thing that falls by the wayside is the house and its appearance.

4) A 12-meal gift at Supper Thyme, Let's Dish, or The Dinner A'Fare is the perfect gift for those of us who would love to put a well-planned, nutritious, and appetizing meal on the table ever night for dinner. Fact is, it rarely happens. There are many a night that I eat cold cereal or cup-a-noodles for dinner because its after the kids are in bed, I am exhausted, and I spent all my energy getting through the day. Plus, by that time all I really want is a nice big glass of cab-merlot anyway.
For those families that have children who follow the gluten-free cassien-free diet (GFCF diet) due to autism or celiac disorder there is now a mail-order dinner delivery company for them as well. Gluten Free Meals can be found here.

5) A gift subscription to Netflix or a totally mindless magazine like People or Us. Fact is, sometimes we just want an escape. Even if we can't physically escape our surroundings due to the needs of our children we still like the escape of a funny movie or some good gossip. Its fun to step outside ourselves for a time, even if only for 10 minutes.
One year my dad gave me a subscription to People Magazine. I cannot tell you how much I adored that gift. It was the best gift I ever got. Seriously. Just don't tell him I said that.

and...

The Don'ts:
1) Don't buy anything that is precious, breakable, or otherwise impossible for me to display in my home. If the boys can reach it, climb up to it, or find a way to knock it down...trust me, they will and they will do it within the first 24 hours of it being in my home. Most homes with autistic children are spartan. Not because we have a love for swedish-home design but because our number one priority is keeping our children safe. This includes going above and beyond typical baby-proofing of the house. It means that our kitchens and certain rooms of the house may still have baby gates restricting entry. Our appliances such as the fridge, oven, washer, dryer, and water heater room may have padlocks or other sophisticated locks to prevent our children from gaining entry. Our furniture is most likely simple, washable, and may not be altogether comfortable from the kids using them as trampolines and art canvases...and no, you do NOT want to know what the medium of art may have been.

So please, do not buy me that Willow Tree figurine or the pretty lamp you thought would look perfect in my living room. What I really need is new carpet...or better yet, hardwood. It cleans easier.

2) For that matter I think that any high-dollar item such as a flat-screen TV, stereo speaker system, or bose radio is best left for another year. Like when I'm 60.

Noah loves to stick his fingers in his mouth and then 'paint' on the TV screen, Sam thinks that speakers are drums meant for banging, and I cannot count the number of DVD players we have gone through since Sam was born in 2003. All children break things. My children annihilate them.

3) Fancy clothing, shoes, or accessories are most likely not going to be used often, if ever. Some moms may disagree with me on this but I can tell you with 100% accuracy how many times I have worn heels or a skirt in the last year. Once. I didn't even wear either the day I got married. Fact is, we went to Target right after the ceremony because we needed to pick up some diapers for Sam.
My typical wardrobe consists of either Gap-brand jeans or black lounge pants and a T-shirt, most likely one of my favorites from Bass Pro Shops. Don't believe me? Here is 1 of 5 I own:

I wear one of these shirts everyday. They make me laugh. I couldn't catch a fish if my life depended on it, but I do love me some Bass Pro!
If you really want to bless the mom like me with some new clothing because you're sick of seeing me in the same old thing then consider a gift card to one of the following: Old Navy, Gap, Lane Bryant, or if you want a cool bass shirt like mine....Bass Pro Shops. You know you want one!

I am sure there are others on the Do and Don't list that I have forgotten. I may update the list as I think of new ones. Feel free to leave me a comment and let me know what your Do and Don't list would look like.

In closing it occurs to me that many of the items on both my lists are similar to those of a new Mom or Dad who suddenly find themselves stuck at home for the first few weeks without a clue as to what this parenting thing is all about. They easily forget about the basic needs of everyday life. Food, sleep, entertainment, cleanliness, and taking care of themselves so they can better take care of their child. When you have a child with autism that settling-in period can last YEARS.

I know.

"You bought my kid WHAT?" The Autism Edition

Finding appropriate gifts for children on the autism spectrum or children with any developmental disabilities can be a bit daunting. My children have received some interesting gifts over the years...and by interesting I mean not the best choices.

So, in hopes of clearing up any doubt you may have in finding the perfect gift for the special needs sweetie on your list here are some of my humble recommendations.

1) Do NOT buy any item that includes very small parts, such as magnets. Many children with autism have oral motor issues which means they still put everything in their mouth as a way of learning more about the items they see and touch. If a child were to swallow more than 1 magnet it could have catastrophic results...meaning death. Once ingested the magnets will attempt to 'find' one another from inside and can perforate the intestines and bowel causing massive internal injuries and bleeding. Other toys with small parts, such as legos, are also a choking hazard. Do not buy any toy which can fit in a child's mouth for any child with autism unless the mother of the child tells you it is safe to buy it for her child. Trust me, she'll thank you for asking!

2) Do NOT make the mistake of thinking you have to purchase the toy from a special-needs catalog or store. Many of the items these catalogs sell are available for much cheaper from Amazon.com or Toys R Us. In fact, Toys R Us has a special needs catalog they produce every year with their recommendations of toys they sell on their shelves that are appropriate for children of disabilities and also one specifically for children on the autism spectrum. You can access both catalogs here.

3) DO call and ask the child's parents what gift they think their child would most enjoy and appreciate. You may be surprised at the answer you will receive. For instance, both of my boys are obsessed with Baby Einstein. Case in point, this picture:

In this photo Noah is holding 4 Baby Einstein books, 1 butterfly puppet, and his beloved planket. He carries them with him everywhere. School, playgrounds, bed, church, grocery store....EVERYWHERE. He keeps them in a specific order and will accept no substitutes. I have backups of each of these books in case of 1 being destroyed or God-forbid lost.

Both Sam and Noah will watch Baby Einstein DVDs for hours on end if I would let them. Because I do not they will then spend the remaining time looking at Baby Einstein books, toys, and music CDs. These items are marketed for children under 12 months of age. However, my boys at almost 5 and 7 years of age are the perfect audience for anything and everything Baby Einstein. When anyone asks what the boys would like I always start with a list of newly released Baby Einstein items they do not yet own or in such cases as the books, extras of what they especially love.

4) Do NOT assume the recommended ages listed on a toy are accurate for a child with special needs. Baby Einstein is for babies...unless of course your name happens to be Sam or Noah. Similarly, items which are gender-specific (which I think is silly to begin with) is not necessarily a trustworthy standard. For a number of months Sam listed pink as his favorite color and to this day loves visiting Barbie, Polly Pocket, and Strawberry Shortcake's websites. Noah loves butterflies, fairies, and Dora the Explorer. if someone has a problem with that....I'll shoot em in the butt with my rubber band-gun because this chick likes boy's toys!

5) Do NOT buy clothing! In general, no child wants clothing as a gift on their birthday or Christmas, but for a child with a sensory-integration disorder or autism what they will and will not wear is not a battle most parents want to fight. As long as our children are dressed appropriately for the weather outside we don't care. What I do care about is reducing the amount of time I spend removing tags on the inside of their shirts, socks that have seams, and clothing with strange textures I know the boys will cringe just to look at. However, clothing is needed and I often ask for a gift card to Old Navy or The Children's Place as my Birthday or Christmas gift so I can purchase items I know they will wear.

6) Do consider one of the greatest gifts you can give a child with special needs is your time. My children's greatest 1:1 relationships are with those people who find what my children love, what they connect with and find a way to include themselves in its enjoyment. My best friend Becky and her 2 kids are experts at this. Becky, knowing Sam's love of music, didn't think twice about allowing Sam to tap and play with her daughter's VERY expensive violin on one of our visits to her home.


Her children Katie and Adam can often be found sitting with Sam at the computer or laying on the ground in front of the television with Noah because that is his favorite position in which to watch TV and they want to include themselves in his enjoyment.


You can do the same thing! It is all about letting yourself see the world through their eyes and in doing so finding a way to connect. My boys may not make good eye contact or talk to you about their likes and dislikes but they do become very excited when someone shows interest in what interests them. Keep your expectations in check and you may find out something new about the special children in your life and in turn yourself.

Honesty during difficult times

It has occurred to me that when I first decided to begin blogging it was meant to be an outlet for me or at least therapeutic. I wanted to have the cathartic result of posting about the ins and outs of a daily life spent raising two autistic boys. Funny thing is, I find I rarely blog about Sam and Noah anymore. If I was totally honest with myself I would realize there are many reasons why.

Its neverending...
Motherhood is a full-time job. Whether a mother stays at home and raises her children or works outside the home it is a FULL TIME JOB. Mothering 2 autistic children is beyond words. It is all I have ever known and so I cannot adequately describe what it is that makes it so much more difficult than raising neuro-typical children. I trust what my friends and family tell me when they look at me and say, 'I don't know how you do it'.

I'm not really sure either.

Parenting autistics is consistently giving 110% every single day and never ever letting your guard down. Not even for a second. It means not taking a shower between the hours of 4 am and 9 pm because the moment the bathroom door shuts the boys start ransacking the house, jumping over the gate in the kitchen, and experimenting on how to open the front door and roam the neighborhood without shoes or coats. It means not sitting down for longer than 10 minutes because its really no use anyway. One of the boys is always trying to climb the furniture, bang on the television with a blunt object, or reaching into their pants to spread poo. Oh, yeah...and then there is the whole diapering of 2 children who are almost 5 and 7. Its exhausting just recapping it here. Which is exactly why I think I put on a brave, upbeat face here on my blog. Who wants to hear me recant my daily struggles? Maybe no one. Or maybe there is another mom out there just like me looking for hope in the midst of suffering the same struggles with her autistic child.

Its pretty depressing...
And frankly so am I a lot of the time. I have struggled with depression since the age of 14. I have taken antidepressants and anti-anxiety medicine since I was 16. I took it through both pregnancies because the risk of not taking it greatly outweighed the possible risk it could pose to the baby. Or at least that is what they told me. My struggles with depression were certainly much worse when I was younger. After having children I I took the, 'I have crap to do' mentality and didn't let myself wallow and lose hope on a daily basis. I took my medication, saw my therapist regularly and did well.
I also must credit my belief and trust in Jesus Christ which has played an enormous part in my realization that this world is not all about me. Never has been, never will be. For the most part the combination of medication, therapy, and my Savior has sustained me.

Most of the time.

But every so often I find myself going through seasons of depression. Its always the same. All I want to do is sleep. However, I am sure a lot of that is due to the boy's erratic sleeping schedule and penchant for waking up at 4:00 am for days at a stretch. I have never done well emotionally when my sleep is disturbed. Most of all lately I have been having a harder time with my place in this world as a parent of 2 autistic boys. I find myself questioning God's plan for my life. I pray, I ask for wisdom, and I even ask for patience. Then I feel like maybe that is exactly what God is teaching me through my children. Extreme and unceasing patience. I think I would like to end that lesson. At least for a little while.

Its hard to see the light at the end of the tunnel...
The only light at the end of this journey is the knowledge that God WILL work all things for good and that He is in control. But when I think about the boy's future it is hard to take it all in. I am afraid there may come a day when I will be unable physically to care for my boys. Like all children, they will grow up. Someday they will be men, and yet, most likely still child-like. At their current ages and sizes I find it increasingly difficult to take them out on my own. Certain places are completely off-limits to our family: Restaurants, Shopping malls, Grocery stores, Vacations, Walt Disney World, etc. In fact, Sam has reached a weight and a combativeness that makes it very hard to take him 1:1 almost anywhere. When the boys were smaller they could be buckled into a grocery cart or if a meltdown ensued I could just pick them both up and carry them out of the store. I can't do that anymore. I simply lack the physical strength necessary to overpower a 4 1/2 year old and his kicking & screaming older brother. Its lonely, but so much easier to stay at home and reserve my necessary outings to when they boys can be with their Dad or my husband, their Step-dad.

What if their comes a time when the best place for the boys is away from my home? Perhaps placed in a group-home or residential school for autistics? How will I wrap my head around that? I know many families who have had to make that same decision. However, I do not know of any where the two children who left were the only children in the home. It seems so sad. So scary. So possible.

And that scares the crap out of me.

******************************************************

Sam and Noah are my boys. My babies. The children I prayed for, I begged God for. Someday when they leave our home it will not be to attend college, or to marry their high-school sweetheart and come back for the holidays with their children, my Grandbabies, in tow. When they leave it may very well be to be cared for by a complete stranger. A group of people who are specially trained and capable of implementing and carrying out a personalized schedule based on their individual needs and goals. I struggle attempting to do that for them now. They are so very very different.

So you see, I want to talk about the reality of autism in my life. I want to be honest and upfront and share this path I am on with those who care to join me. I hope that despite my sometimes non-stop, depressing, questions for the future that I write about I may be able to find solace in my honesty and respite in my soul.

Crayon Craziness

I have found every family with small children has 1 thing in common.

Crayons.

I always loved my brand new box of 64 crayons I would get at the beginning of every school year. I would gain such pleasure when I would open the box for the first time and see all the new, unblemished beauties just waiting to grace the paper. I would be very gentle to not wear down their perfectly sharpened tops prematurely and I never ever broke them.

EVER!

Maybe it is a girl thing. The whole coveting the newness of our crayons and wanting to keep them looking as nice as possible for as long as possible.

It is clearly NOT a boy thing.

This is what all the crayons look like in my house:


Broken to bits, snapped in half within minutes of leaving their pristine box. All this obvious crayon violence upsets me and leaves me asking, 'WHY?'

Not that I get an answer.

Instead I get this:

and this:


and I think to myself perhaps Noah is trying to help me chose the new color for their bedroom? But more likely he is just enjoying writing all over the walls. Using those sad, broken crayons.

Well, today I fixed his wagon!

You see, when life (or children in this case) give you broken crayons


you can turn them into a real work of art. Think of it as recycling. I think of it as good Christmas gifts for all my mommy friends!


All I did was peel the wrappers off all the broken crayons, break them into even smaller pieces, and then place them into a very well greased muffin tin and bake at 250 degrees for about 8 to 10 minutes. Then you let them cool completely and VOILA!


Presto Change-O! You have a super-cool giant crayon with all the colors of the rainbow.

Anyone misplaced their thorny devil lizard?

I found him.

In my throat.

O.U.C.H.

Our 5 Minutes of Fame

The boys and I are featured this month in Baltimore's Child Magazine. We are featured as a 'Very Special Family' and that we are.

If you would like to read it for yourself you can reach the whole shebang here.

What I love most is the amazing photo of the boys and I. When the photographer came to do the photo shoot she took a number of pictures in rapid succession and said she does that so she can use a program like Photoshop to cut out their faces and paste them over another shot thus making it appear as though they were both looking into the camera at the same time

Technology rocks!