A matter of perspective...

Hi everyone! This week has been one of major celebrations at our humble little home. These are not the things most families would celebrate, but for us they are MAJOR!

Our first accomplishment was that Nathan went (and stayed) in Sunday school ALL BY HIMSELF for the first time since last spring!!! I PERSONALLY walked him to the classroom and left him there with the teacher in charge! First of all, just the fact that I got to drop him off is a miracle all on its own. Secondly, the fact that he stayed and I got to sit by myself and enjoy the sermon... well, that's just unheard of! You see, the special needs Sunday school ministry has not been working for Nathan. I'm pretty sure it's because he sees me working with other children and it's just too hard for him to leave me so I can "play with other kids." As you all have been reading, I have been praying for months for this to happen. I even wrote a post about this being my prayer for the new year... I just can't believe how amazing God is and how fast He came through on this prayer request! I give Him the top credit, I give Nathan second credit for being such a big boy and I HAVE to give credit to an amazing Sunday school teacher, Gabriela, who just absorbed him into the group and never looked back.

Our second accomplishment is that Nathan has now gone TWO DAYS using the potty instead of his diaper/pull-up! He's not even four yet!!! I just can't believe it! He's even going #1 AND #2 in the potty!!! He'll go on the grown up potty here at home and even when we're out! This week he went with my husband to visit his grandmother at the rehab hospital and my husband says Nathan pulled down his pants and pull-up and ran down the hallway yelling "pee pee in potty!" (telling his daddy that he needed to go!) To most parents that would be a terrible embarrassment, but to us, it's a cause for celebration and praise! You see, soon after Nathan's diagnosis I watched a video by Autism Speaks of moms of kids with ASD. The thing that struck me the most (something I was not expecting) was how many of the moms talked about still changing diapers after kindergarten. This was what I thought was in store for us, but God is good and Nathan is well on his way to being done with diapers!!! I give TOP credit to his teachers at school, who have been working tirelessly on this effort for over a month now! They came through, BIG TIME!!! We've had our differences in the past, but hands down, they deserve all the credit for Nathan's accomplishment in this realm!

Ironically, after this AMAZING weekend, he had one of the worst days ever later in the week... so much so that I had to call my husband to come home from work because I was quite freaked out. Well, everyone always tells me that these kids take one step back before taking one major leap forward and I am convinced that was it... plus it was his first day home for school vacation and he was getting sick (hence my joy of him using the potty). So I am thankful to our Lord in SO MANY ways today that I can't even find the words!!!

Just this week, the Autism Support Network posted a great story written by a parent about this same phenomenon I just shared. Our entire life perspectives have been changed after autism touched our families. Autism has made us "celebrate" even the smallest win, things most people would take for granted. We could choose to over-focus on all the challenges and obstacles, which are many! Instead, we choose to have a parade with each and every single small win and accomplishment! I share that story with you today. Thank you for your prayers and know that God is always in control and He will ALWAYS come through!!! Blessings! DC

Let me tell you a little about celebrating autism

Stuart Duncan

Milestones are an achievement, not just an item on a list

When I tell the average person that my son has Autism, they feel really bad for me. The fact is that there is a lot to celebrate.

When you have a child with Autism, you learn to appreciate the milestones, both big and small. Some would say that we celebrate a little too much for such little accomplishments but I’d argue that we celebrate accordingly, it’s other parents who take them for granted.
First words, learning to walk, swimming, riding a bike, reading, writing… all these things that make parents proud are far more than just steps along the way when your child has Autism… they’re cause for celebration.

Take nothing for granted
Along the same lines, but very different from milestones, is taking nothing for granted. Unless you have a child with Autism (or another disability like it), you’ll probably never know what it’s like to be lucky enough to be hugged one time a year.
Does your child look you in the eye? If your child has Autism, maybe not. Does your child give you a hug or kiss sometimes? If your child has Autism, maybe not.

You will never ever realize just how much the tiniest little things can be so extremely important until they’re not there.

Patience, more than you ever thought possible
The biggest problem with milestones is that everyone knows what they are and when they should happen so when your child is missing them, everyone says something. It’s hard, it’s oh so very hard.

After a while though, you develop a thicker skin… not just the patience required to take their “advice” a little better but also to have the patience and self confidence in knowing that if you never give up on your children, the milestones will come.

The beauty that is around us
The world around us moves pretty fast and can be so filled with sights and sounds that it turns into a bit of a blurry mess. Our mind makes it that way to keep us from becoming overwhelmed, crazy and tired. We filter through a lot of everything that goes on in our daily lives without really realizing it.

Many people, especially the children, with Autism don’t have the same filtering capabilities and often times do get overwhelmed by it all. This often results in meltdowns or even violence.

You, as the parent, become increasingly aware of the world around you because you have to, because you need to know what you are getting your child into. Loud restaurants, carnivals, movie theaters… many many places can be far too difficult for your child to be able to process and you need to be aware of that before the fact.

As you develop this ability over time, it forces you to slow down and truly appreciate the sights and smells and sounds that surround us every single day.

You go outside and there isn’t a car in the neighborhood… it’s so very peaceful. Before you likely never would have noticed, much less enjoyed that feeling of peace, because your mind builds that filter in place before you ever go out and so you don’t notice if there are cars or not.

Your child is perfect because of who they are
It isn’t until others see your child as flawed, and worse, until you start to see your own child as flawed, that you can learn what is truly important… not a disability, not a disorder, not even a gift… a child is who they are inside and who they are inside is exactly who they are supposed to be… your child.

It’s ok if no one will ever look at your child the same way you do, they’re not supposed to. Our children are amazing human beings with unlimited potential.

The difference
Celebrate the differences, not just in your child, but in yourself. For better or worse, you’ve become a better person for it, you’ve become a better parent. Your child isn’t like other children… and that seems hard to take but honestly, before your child was born, and you saw how “other children” are on the news or in movies… is that really what you wished for when you imagined having a child? For them to be like all the others?

No, none of us want our children to have it harder than anyone else, and no we don’t want our children to suffer… but many of us recognize that we can have these thoughts and these feelings while still being able to recognize and celebrate the differences.
Your child is amazing. You are amazing. Celebrate it… you’ve earned it.

Courtesy of Stuart Duncan

Read more: http://www.autismsupportnetwork.com/news/let-me-tell-you-little-about-celebrating-autism-33899232#ixzz1nF5fzaEI

New Research: Hot off the press!

Hi everyone!

So, this week I found out that my book manuscript did not make it to the Women of Faith amateur author contest finalists list (sigh!). It was hard for me at first, but about a half hour later I felt this incredible sense that it just wasn't God's timing right now. I know my story needs to be told and I know my book will get published someday but that day is not today.

I quickly forgot all about my book situation because so much amazing research has just come out of the National Institute of Health (NIH) this week. As you know, even before Nathan was diagnosed (or even born!), I was an avid fan of research and evidence related to autism spectrum disorders. Now, more than ever, I urge ALL parents to read and learn as much as they can. There is no such thing as knowing too much! Three studies were just published in the past week. I will provide a brief synopsis of each of the studies and the links to the NIH page with the longer article. I've also listed these on my Autism Research News page. For those of you who are regular readers, please keep checking that page. I update it at least once a month!

The most exciting research that came out this week for me as an OT is one that didn't tell us anything new, but found evidence to substantiate my last 17 years of work. This study has now shown that ASD actually inherently includes motor impairments. Both Dr. Kanner, who originally described Autism as a disorder, and Dr. Asperger, who then described a subset of kids similar to Dr. Kanner's but with average to above average intelligence, mentioned motor impairments in the two groups of boys they studied back in the 1940's. As an OT, I have been working on this area of skill with hundreds of kids over the years. It is also one of the main reasons I went back to school and got my master's degree specializing in autism. Here is a brief description of the study and the link:
FRIDAY, Feb. 17 (HealthDay News) -- Autism itself seems to be responsible for the problems children with the disorder have in developing motor skills such as running, throwing a ball and learning to write, according to a new study. The investigators studied children from 67 families that had at least one child with autism spectrum disorder and a sibling in the same age group. The test results showed that 83 percent of the children with an autism spectrum disorder were below average in motor skills, while their siblings without the disorder generally scored in the normal range, according to the study released online in advance of publication in an upcoming print issue of the journal Autism.
To read more, go to: http://www.nlm.nih.gov/medlineplus/news/fullstory_122060.html

Two other studies that came out this week were also exciting. One has a more medical/neurological focus, while the other is related to social-emotional issues in teens with ASD. Both are worth checking out, particularly the one about use of video games (the statistics are kind of scary!). Here are the synopses and the links:

FRIDAY, Feb. 17 (HealthDay News) -- In children as young as 6 months old, changes in the brain that can lead to autism spectrum disorder may have already begun, preliminary research suggests. The report was published in the Feb. 17 online edition of the American Journal of Psychiatry. For the study, a team led by Jason Wolff, a postdoctoral fellow at the Carolina Institute for Developmental Disabilities at the University of North Carolina, used MRI brain scans to look for early brain development in 92 infants. These babies all had older sisters or brothers who had been diagnosed with autism spectrum disorder, putting these infants a higher risk for developing the condition, the researchers noted. Of the 28 infants who developed autism spectrum disorder, the scans showed different white matter development in 12 of the 15 brain pathways the researchers looked at, compared with 64 infants who did not go on to develop autism spectrum disorder. At 6 months, these pathways were denser than usual in the babies who developed autism spectrum disorder, but on later scans development had slowed. At two years, the pathways were less dense than those of typical toddlers, the researchers found. In the future, the new research may have a clinical application, he said, but right now "this is not a diagnostic test and parents should not be asking for it."   http://www.nlm.nih.gov/medlineplus/news/fullstory_122057.html

TUESDAY, Feb. 14 (HealthDay News) -- When given the opportunity to have screen time, children with autism spectrum disorders typically choose television and video games over social interactive media, such as email, a new study finds. The preoccupation with video games could interfere with the children's socialization and learning, warned the researchers, whose study appears online in the Journal of Autism and Developmental Disorders. In conducting the study, the researchers analyzed information on more than 1,000 teens in special education classes, including those with autism spectrum disorders, learning and intellectual disabilities, and speech problems. About 60 percent of the teens with autism spectrum disorders spent most of their time watching TV or videos, the investigators found. "Television viewing is clearly a preferred activity for children with ASDs, regardless of symptoms, functional level or family status." Moreover, 41 percent of the teens with autism spent most of their free time playing video games, the study authors found. "Given that only 18 percent of youths in the general population are considered to be high users of video games, it seems reasonable to infer based on the current results, that kids with ASDs are at significantly greater risk of high use of this media than are youths without ASDs," Shattuck added. In contrast, the teens with autism spectrum disorders were less likely to use email or social media. "We found that 64.4 percent of youth with ASDs did not use email or chat at all," Shattuck said. "Kids with speech and language impairments and learning disabilities were about two times more likely to use email or chat rooms than those with ASDs." He noted, however, use of social media increased among the teens with autism spectrum disorders as they got older and their cognitive skills improved. http://www.nlm.nih.gov/medlineplus/news/fullstory_121913.html

Blessings, everyone! DC

Another Beautiful Devotional from DaySpring

In Your Hands Heavenly Father, my life is in Your hands. Yesterday, today, and forever, I am safe and secure in You. Lord, please help me to know that You are in control. Help me to believe You are at work in my life right now, even when I don't see it. Help me to trust in what I do not see, when what I see is so painful. Please help me to know You are taking care of my needs. Lord, thank You for listening to my cries for help. Thank You for loving me so much. Help me to believe You and the promises You have made. Forgive me when I doubt You and Your love. I believe, Lord. Forgive me for my unbelief. The LORD himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8 Devotional excerpt by Jill Kelly, from her book Prayers of Hope for the Brokenhearted.

You Are Loved

From Dayspring Devotions
http://devos.dayspring.com/

You Are Loved
God's love is different from ours.
God doesn't just give love - He is love.

We are experts at earning the affections of friends, lovers, children, and our families. Coming face-to-face with a God who loves us unconditionally sets us off balance. It's much easier to believe, "If I go to church and read my Bible, God will love me." That makes us feel safe because it seems we can control God's love. It's scary to believe in God's unconditional love.

What if it's not true? Then the deepest desire of our hearts can never be a reality. We watch Cinderella and the prince then hope for our own version of living happily ever after. But life disappoints us, and God is our last chance to be fully, deeply loved. So we do everything possible to please Him because even though we've endured many rejections, His would be unbearable.

 But God is whispering the words to our hearts we long to hear if only we can dare to believe them: "You are loved deeply, truly, always." That's the kind of crazy love that sets us free forever. God invites us to take His hand, trust His heart, and believe that the love we've been searching for all our lives is the love we've already found.

 --Devotional excerpt by Holley Gerth, from her book God's Heart for You: Embracing Your True Worth as a Woman. For more hope and encouragement, visit Heart to Heart with Holley and subscribe by email there to receive her free devotionals
http://www.holleygerth.com/

Go Team Peace in the Puzzle!!!

I'm so sorry I haven't written anything in so long. For those who do not know, we've been going through a month-long illness loop at our house of colds and stomach bugs. Add to that the fact that my mother in law has been in the hospital for over a month now and that has turned our world upside down. We ask that people keep her in your prayers, and I especially ask for prayers that God continue to give my husband the strength to endure everything that's being thrown at him right now. In the midst of all the chaos this month, we have a beam of sunlight peeking through:

Our fundraising team, Peace in the Puzzle, was honored at a reception this weekend for being one of the top grossing teams for the Greater Boston Walk Now for Autism Speaks in the year 2011. I am proud to have been the captain for our team, but can not take any of the credit for the incredible job my team members did with the fundraising! Kudos to them for their hard work. An unexpected surprise was the trophy we received at the gala on Saturday night!!! My husband and I weren't able to go (with all that's been going on), but the Powers family was there to represent our team and rightfully was awarded the trophy, since they were the top fundraisers of the group! God bless you guys!!!

To all my readers, keep in mind that even in our greatest sorrow we can do so much to help others. One of our team families had recently received ASD diagnoses for BOTH of their kids when they joined our fundraising team back in July 2011, yet they turned their energies towards fundraising and allowed our team to do so much to help others through the wonderful organization of Autism Speaks. Once again, here is the verse that gives us strength to keep going, knowing God has everything in control and that each thing that happens is part of His master plan:
"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you. And you will seek Me and find Me, when you search for Me with all your heart. I will be found by you, says the Lord." Jeremiah 29:11-14a

Go Team Peace in the Puzzle! Over $6,000 raised our first year!

Be blessed!
DC

Could YOU do what WE do?

I am reposting in case people didn't get to read this. To most of my regular readers I'm preaching to the choir, but I wanted folks to really pay attention to this.
Today I just need to vent. I wanted to share a note that I posted on Facebook:

My little man’s ASD has introduced me to a whole network of parents that, although we are total strangers, we are bonded by something stronger than we could imagine! Just today I was comforting two moms who are at their wits’ ends… both searching for solace and support on online networks that have brought us together even across the globe!

I had to chuckle this week when I heard a parent of a “neurotypical” child, a self-proclaimed “soccer mom,” go on and on about taxiing her children to after school and extracurricular activities. But you know what? Although all of those activities are authentically time consuming and demanding, they are being done by choice. In comparison, we have the ASD parents whose entire lives are literally subject to the endless myriad of appointments for therapy, medical work-ups, social skills groups… you name it! Yet these are not choices for us…this is not entertainment nor are they hobbies, they are a lifeline to our children’s futures. Yes, we must view these things as INVESTMENTS of our time, knowing we will see our returns in the future-- and I don't mean getting really good at a sport or an instrument so the kids can get a scholarship for college. I mean teaching and giving our kids the tools they need just to be an active member and productive participant in society!

Let’s give a typical scenario of a parent of a child with ASD. In a week, we can easily have to:

1.     Bring the child to school (where they receive special education, social skills training, behavior therapy, occupational therapy, speech therapy and maybe even physical therapy on top of the regular academics)

       - this involves knowing your special education law, making sure the school system is providing the help your child needs (which you usually have to FIGHT for) THEN making sure those services are actually happening!

2.     Alter your work schedule (that is IF you are able to work!) to be able to drop off your child at 8 or 9am and then be free by 2 or 3pm to pick them up after school

3.     Upon pick up you are usually in the mad rush to make it to:

a.     Speech therapy 1-2 hours a week

b.     Occupational therapy 1-2 hours a week

c.      Behavior therapy (if you are lucky) 5-20 hours per week

d.     Social skills training 1-4 hours per week

4.     Hopefully, you’ll be able to add in some “typical kid stuff” such as

a.     Playdates- hopefully at least one per week

b.     T-ball or soccer

c.      Gymnastics

d.     Arts and crafts or other fun art activities

Keep in mind that we can't just sit back and "let the kids play" during a playdate. These need to be "facilitated" and orchestrated so that our children can be successful in their interactions while learning how to be social. 9 times out of 10, we are asked to remain with our children during extra-curricular activities because they don’t have the staffing or training to deal with kids like ours. Tired yet? Well, let’s add to that the fact that so many parents of kids with ASD have to stick to special diets, usually gluten-free and dairy-free. This means preparing each meal from scratch using special ingredients—very few short cuts in this scenario!

In between, you have to keep straight all the medical appointments you have pending: developmental pediatrician, neurologist, DAN doctor (if you’re into that—we’re not), developmental psychologist, child psychiatrist (if your child is on medication), GI specialist, on top of regular pediatric and dental check-ups.

Our lives are a mish-mash of picture schedules to help our kids know what’s coming and to preview changes in their schedules. Many of us have to rely on communication devices because our children are not able to speak. We can’t just pick up the phone and call a baby sitter so we can go on “date night.” Finding an appropriate sitter requires plenty of planning and sometimes even a nice chunk of money. Even taking a different route somewhere may be a cause for a major catastrophe and subsequent meltdown requiring you to either pull over or pray to God the whole way home that the safety straps on the car seat or seat belt will be strong enough to keep your child from jumping out the window!

I wish I were exaggerating… if only! But, no, this IS our reality! Most of us are still paying for and changing diapers well after kindergarten. We can’t remember the last time we actually slept through the night or actually sat for a meal (sometimes we can’t even remember if we chewed our food!).  A whole lot of us have put on more pounds than we care to admit because of the terrible eating habits we’ve fallen into, or we’ve lost a ton of weight because we don’t even want to eat.

Yet at the end of the day, as exhausted as we are, we just stand there and stare at our children in wonder… their angelic faces tug at our heartstrings and it’s hard not to let the tears flow. No, most folks do NOT know what it’s like, nor can they relate or even begin to fathom the level of demand, stress, financial and physical exhaustion we live day in and day out. Yet each day, we get back up and do it all over again. Our children are our lives and they are worth every drop of sweat and every tear that falls.

I am not angry… I just ask for a bit of perspective. No, you can’t imagine what our lives are like, but, please know that we’re all right! Your favorite carpet may have a wine stain, your kiddos may have scribbled on the walls or even broken a window… just keep in mind that so many of us would give anything to be able to just sit and sip a glass of wine. We also wish our kids would pick up a crayon or a ball and want to play like your kids do. We are not a group to feel sorry for, but, please don’t ever tell us that you know how we feel because you don’t… you can’t! Only a person who’s walked in these shoes can possibly relate or understand. All we ask is that you be a bit more conscientious when you air our your gripes and complaints… We spend our days counting our blessings even in the midst of our chaos. Maybe you should do the same!

DC

Traveling with someone who has a disability?

T R A V E L E R S WI T H D I S A B I L I T I E S

TSA Cares is now available and accepting calls. Travelers may call TSA Cares toll free at 1-855-
787-2227 prior to traveling with questions about screening policies, procedures and what to expect
at the security checkpoint. Travelers who are deaf or hard of hearing can use a relay service to
contact TSA Cares or can e-mail TSA-ContactCenter@dhs.gov.

The hours of operation for the TSA Cares helpline are Monday through Friday 9 a.m. – 9 p.m. EST,
excluding federal holidays. After hours, travelers can find information about traveling with disabilities
and medical needs on TSA’s website at: http://www.tsa.gov/travelers/airtravel/ disabilityandmedicalneeds/

When a passenger with a disability or medical condition calls TSA Cares, a representative will provide
assistance, either with information about screening that is relevant to the passenger’s specific
disability or medical condition, or the passenger may be referred to disability experts at TSA.
TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares
has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager located
at the airport when necessary. Learn more at: www.tsa.govTransportation Security Administration.
http://www.tsa.gov/travelers/airtravel/disabilityandmedicalneeds/