Why Awareness?

Why awareness?
If I could "cure" autism, I would not. Please don't misunderstand. If there are things we are doing with the chemicals in our food and environment leading to autism, I want people to be educated and not do things to increase the chance their child will face potentially debilitating challenges. And yes, I would love to save some of the heartache, financial woes, etc.  challenging families and marriages. BUT those challenges have shaped us, made us more grateful, and introduced us to amazing people we would never have known without autism.  I don’t want to “cure” Deane’s autism.  I don’t want to change who he is, but we do want to grow the abilities and opportunities for our son and others with similar challenges.

I've known my sweet boy for six and a half years.  For the last four, I have known he has autism. Time has softened my perspective. I no longer focus on what looked like autism happening to my child as I watched the light leaving his eyes.   I now think of autism as part of who he is. He is uniquely Deane and he is fantastic.
As we mark another Autism Awareness Month, I asked myself what exactly do we want to come of raising awareness.  We all rally around causes because we want cures or research funding or supports, etc.  So, what exactly do I believe would come of autism awareness?  

• For families of a young child with autism who are trying understand their situation (therapies, insurance, family roles and dynamics), I hope for support.
• For kiddos struggling to keep up in school (whether socially,  academically or other), I hope for resources - trained people, time and funding needed.
• For pre-teens and teens dealing with the potential setbacks of puberty and the challenges of daily living in the social world of junior high and high school, I hope for understanding and patience.
• For those transitioning to adulthood, I hope for more employers to see the unique value of adults with autism.
• For adults who have been forgotten or dismissed,  I hope for love and care.

I think understanding and awareness are the first steps to making these things happen.    Who doesnt want to be understood?  Believing we have a responsibility to help is a big part of the solution.  

Here are some practical ways to raise awareness and support those trying to give children and adults with autism many abilities.

EDUCATE YOURSELF
This can be challenging since autism comprises such a broad spectrum.  Here are a few articles you could read or videos to watch this month to better understand individuals with autism and those caring for them:
Ten Things Every Child with Autism Wishes You Knew

TED Talk: Temple Grandin - The World Needs All Kinds of Minds

Autism Meet Adolescence…Kaboom!

Ten Things I Wish Someone Told Me About Parenting a Child with Special Needs

25 Random Things About Motherhood Autism Style

A Day in the Life of an Autism Parent

Calming a Meltdown - I share this 5 minute video because this is very similar to our experience for a few years.  It brings tears to my eyes, but this is not what the child or the parent wants.  This is two people trying to cope.  It is exhausting, all of the emotions are pouring out of both.  I experienced this followed immediately by a calm child hugging me and eventually saying thank you.

11 Things Never to Say to a Parent of a Child with Autism

Autistic Boy Explains Autism - a touching account of a 19 year old boy

The Obsessive Joy of Autism

SHARE INFORMATION & ADVOCATE
Share some of your favorite articles or videos with others on social media or in conversation.  Don't allow adults or children to treat or even talk about people who are different in a derogatory way.
Here are a couple links about teaching children about autism:
Children’s books about autism
Teaching Children about Autism

DONATE
Consider the specific mission of nonprofits.
There are organizations who focus on improving the lives of individuals with autism and include those individuals in their organizational governing such as the Autism Society of America or Autism Self Advocacy Network.
Consider organizations that benefit your friends and neighbors who have autism.  My two local favorites:
Children’s Therapy Center (Moline, IL) - Deane has been receiving OT services from CTC for four years.  CTC works to make services available to all families regardless of their financial abilities.  Our OT, Christy Hansen, has navigated the maturity process from 2.5-6.5 and covered almost every area of which you can think.  They have an impressive history of service to our local community.  
Quad Cities Autism Center (Moline, IL) - Deane has attended here since June 2011.  His teachers here and the advising staff have literally taught him to communicate, have taught him the joy of learning, and have shown him endless patience and care.  We have no idea where we would be without this opportunity and the extremely high standards of the director, Michelle Smyth.

Thanks for taking the time to consider what you can do this month to be an autism advocate!

What Autism Looks Like - 4 Years Later Edition

I tried to explain what autism looked like describing Deane’s “symptoms” in 2011 and another update two years ago.   I used terms in a way I would not now.  Re-reading that post opened my eyes to our evolution in the last four years.  There has certainly been a progression from ownership as a family of all-things-autism in our life to recognition that it is Deane, an individual, who has autism.  We are simply his family trying to figure out how to support and work together considering some unique parameters.

To continue to document his progress, I will attempt an overview of how the symptoms of autism have evolved within Deane or how they impact Deane in the world.
Speech -
Since the loss of communication and lack of phrases is what led us to originally seek a diagnosis, I cannot fully express how far we have come.  Although Deane does not have extensive conversations, he will continue to speak with us for several questions and answers.  He sometimes gets very excited about a preferred topic and will share everything of which he can think.  This is not a disassociated list, but he is very much sharing his enthusiasm assuming the listener will feel the same.  He is no longer echoic.  He sings at random, which is an amusing mixture of praise music and whatever latest pop or hip hop song his dad has played for him.  His spontaneous language is rich with a variety of words and ideas.  For whatever reason, Deane experiences periods of time (usually a few days to few weeks) where his communication will come more fully alive.  It seems to occur around a vacation.  He shares many more of his feelings and the thoughts that we can see being formed the rest of the time.  These are my favorite days.
Sensory -
Through Occupational Therapy and maturity, Deane has overcome many of the tactile (touch) aversions he had when smaller.  He manages sound very well. You may see him cover his ears at times, but this is rarely to avoid a loud noise.  He uses this method to block out sound because it is one sense he can control when he is overwhelmed.  I find this happens primarily when he is encountering something too emotional - a scene in a movie, a crying sibling.  Temple Grandin’s book, The Autistic Brain, gave words to Deane’s sensory behaviors better than any other collection of information.  It is common to want to understand whether a child over or under reacts to sensory input.  Temple discusses Carly Fleischman (a non-verbal woman with autism and co-author of Carly’s Voice) and how in a scenario of sensory over-stimulation, she is equally likely to shut down as she is to have a tantrum.  This has been Deane, but I am seeing his ability to communicate through these scenarios improve regularly.  He still avoids sloppy foods.  His diet is still pretty narrow.  He often walks with his body pressed against us looking for input.  He can appear hyper-active as he pursues enough input to regulate himself.  The theme of our sensory journey has been that as his ability to communicate increases, so does the ability to tolerate or modify the sensory experience.
Social/Emotional -
This is another area where ability to communicate and understanding is paramount.  I would consider this my primary focus for Deane at this time.  As a parent, it feels like this is an area with few research based tools available and few people with significant training.  Managing the unique social and emotional needs of each child with special needs makes this work too large for schools and therapists and too daunting for parents.  This is not untrue of all developing children, but most do not need all social scenarios explained, hand over hand instruction, prompting during interactions, or someone recognizing needs for breaks, etc.  Over time, Deane has developed better understanding of the boundaries with his siblings.  He is motivated to “teach” his little brother, Reed, new things.  He is a warm and loving boy.  Although he doesnt always participate, he is beginning to see the value, in sharing or taking turns with items, ideas and being in control.  Hopefully a day will come when he sees how lucky he is to have a sister like Kate to constantly want him to play with her.  And of course she is so lucky to have a big brother like Deane.

Deane continues to attend ABA therapy 18 hours each week.  He has a weekly speech session that is shared with 1 or more peers working on social speech skills.  He continues OT every week or bi-monthly depending on the time of year.  He attends kindergarten for two full days each week.  He spends his free time researching his greatest interests - Skylanders and dinosaurs.  He uses his own laptop and printer to make books, posters, puppets and checklists of his interests.  He loves to spend as much time as possible in his pajamas.  His favorite foods are ice cream, french fries, peanut butter and various fruits.  He reads above grade level.  His favorite books (which we are reading together) are the Magic Tree House series.
This most certainly does not cover it all.  Deane is a complex, fascinating, very smart, sweet, and awesome boy.  I can’t wait to see our shared journey of facing autism continue to morph into how he independently overcomes challenges to reveal his strengths to the world.
So much has happened in four years for which we will be forever grateful.

Autism Awareness 2014

How fortunate we are to have the platform of World Autism Day (April 2nd) and Autism Awareness month (April) to seek awareness and acceptance of the increasing number of people with Autism.  This year, rather than focus solely on what autism is, I would like to share a more universal message.  It is this:

Kids/families with Autism really need what most of us need…more kindness and understanding. 

Yes, it is important to understand what autism is, understand how to explain accepting differences to our kids, advocate for more education for those teaching/working with kids with autism, and to create resources for families handling the impact of autism.  However, whether a child has a label or not, what they need most from classmates, church goers, restaurant patrons, little league teammates, etc. is kindness and understanding.

As adults we have the power to offset some of the pain and suffering in the world that leads to discrimination, marginalized individuals/groups, school shootings, etc.  I suggest that it is up to us to find solutions to these problems.  No, none of us started the fire, but if we want our kids to live in a world with less violence, less people in need, etc., we all have to mold better people. 

We have to start in our own homes by examining our attitudes towards those we label/disregard as “weirdos” and other derogatory terms.  Some of us may not interact with a wide cross section of people each day, but do you know who probably does?  Our kids, grandkids, and neighbor kids.  And the kids they are interacting with are being formed into little adults who will impact this world…in beautiful ways…and unfortunately in scary ways. 

If you are reading this and fail to see how this applies to you because “I’m a nice person.”  “I tell my kids to be nice.”  “No one in my family has these problems,” please consider this thought.  If you are blessed with children that don’t face obstacles you need to create awesome humans that lift up the people facing obstacles.  Humans that see the person alone on the playground and invite him or her to play.  Humans that smile and say 'hello' or 'how can I help' to the lady who appears confused at the library.  Humans that ask important medical/scientific questions about why our world is inundated with more and more autism diagnosis and other related disorders.  Humans who learn emotional intelligence and respect for others so that the idea of putting others down, bullying another child, etc makes them uncomfortable enough to stop others from doing so.

If I haven’t scared you away…I humbly suggest an Autism Awareness Month Checklist:

•  Read this post by Glennon Doyle Melton.  Her brilliance will suck you in, so keep reading everything she’s written…but don’t forget to finish your list.
• Talk to your kids about differences and acceptance – not in a way that creates pity or that makes them do something nice as a favor, but in a way that insights interest in learning about other’s unique awesomeness.  This is a great list of suggestions.
• Be a model of acceptance.  Oh, how I struggle with this.  It’s easy to see a cute kiddo with autism and want to help.  It’s difficult to see a seemingly unpredictable adult or someone whose ways are simply unknown to us and embrace their differences.  If you won’t, who will?
•  If you decide to talk to your kids or co-workers or entire circle of friends and family,  I would LOVE to hear feedback on your experience.  This beautiful, scary world is ours and it’s up to us to make it better.

Thank you for reading and considering this checklist.  May your April be full of greater acceptance, understanding and kindness.

By the way, today is World Downs Syndrome Awareness Day.  ACCEPTANCE, KINDNESS, AWARENESS, LOVE, UNDERSTANDING ALL AROUND :)

New House

It has been a busy eight months since I last posted.  We moved last spring to Bettendorf, Iowa and were lucky enough to have my parents join us in purchasing a home where we all live together...seriously! :)

So far, it has really worked well for us.  We all have roles that we fill and it divides the work.  My mom makes it possible for me to run out and do errands, work out, take the kids to their individual activities, and actually perform a job (more about that another time).

There are oodles of projects on my DIY list for this house, the first Chris and I have bought that was not new at the time of purchase.  However, they are happening VERY slowly.

Here's a quick tour with photos mostly taken from the Christmas season.

1st Floor

Inside our front - 1 project down - inside doors to outside are painted black

The dining room walls house some of my favorite framed items.

Gallery Wall with Pinterest project (search"special date printable" on Pinterest for similar ideas)

My Great Grandma McDavid's apron

The anniversary gift I made for Chris updated with our new location

By far our largest project so far has been the dining room.  It had a chair rail with rotating matte and shiny wine colored stripes under the rail.  We made our own faux board and batten treatment, painted the lower portion an off white color and above a teal-ish shade.

Kitchen

Sunroom

Living Room

We took out the mirror over the fireplace and painted it with chalkpaint.  The current amateur art. :)

Front room for important things like train tables, trampoline, and sensory swings

We finally found a place to house a lot of travel photos again

Main floor bath & laundry room - ready for a makeover

2nd Floor

Hallway gallery of random old frames & Goodwill's finest - constantly crooked

Deane's room - painted his walls including the saying below before we moved in.   He is in need of wall art.  He's still rocking the fortress crib, but as soon as we get the door alarms and gates in place, we plan to try to the big boy bed.

Above Deane's bed

Kids bathroom - Screaming for a makeover

Kate's room - light purple walls, dark lilac ceiling.  Lots of projects in the works for this girl's room.

Master bedroom - Our furniture is too big for our room, but I'm getting used to it.

Master bathroom is open to bedroom

"Schoolroom" - we use our bonus room for a play/learning space.  It's chaos, but hopefully will become increasingly useful.

Schoolroom pic #2

Backyard - fenced in with mature trees and a hot tub.  Last year my dad actually made appleauce from our apple tree - we had no idea we had a producing fruit tree.  The kids love it and it feels safe.

That's the tour! I hope to keep the projects coming in 2013.  I have yet to show you the guest room or the finished basement (aka Grammy and Papa's condo).  More to come...

Deane: A Year (Plus) of Progress

Since we celebrated a year with a diagnosis back in March, I wanted to document the massive changes we have seen since starting intervention/therapy with Deane.  I will never know how much of this would have happened without all of these services, but we didn't have the luxury of waiting to find out.  There has been far more than I can recall or document, but just this information is encouraging to me.  I never know whether we are doing the "best" or "right" thing for him, but I'm continuing to listen for direction to fulfill my role as Deane's mommy and give him the life that he deems meaningful and happy.


Diagnosed: March 21, 2011          Updated: March-June 2012

Speech -
THEN - vocabulary of approximately 50 words, few used regularly, could not connect two words.  Often repeated unidentifiable "nonsense" words.
NOW - inumerable vocabulary, able to speak in sentences, uses variety of tones (bored, excited, surprised, singing voice, etc.), understands a great deal of FFC (feature, function, class) related to various items, locations, and people, has begun using pronouns (about 50% correctly) on his own without instruction.

Communication -
THEN - really didn't answer questions except an occassional nod or noise, answers to yes/no questions were often not representative of actual feeling, nearly no joint attention, commonly dragged us by hand to item he wanted
NOW -  answers a variety of types of questions (including Where, What, Who questions), initiates conversation, expresses need and wants verbally, responds well to nearly anyone if not other engaged/overwhelmed, initiates questions/requests with known adults and strangers

Receptive Language Skills
THEN - could sometimes identify items from group of 2-3, rarely followed a command
NOW - understands how to perform some routines without prompting, can identify items in large fields (10-16 items), always understands commands and sometimes can perform multiple step directions

Motor Immitation
THEN - would not imitate any motor immitation, even with vocal prompt ("do this")
NOW - loves performing nearly any motor immitation

Social -
THEN -liked children, but typically played alongside and didn't interact, would not engage in turn taking behavior
NOW - initiates social interaction, cannot maintain a conversation with a child, will play jointly at times, enjoys social interaction sometimes, beginning to play in turn taking fashion

Emotional
THEN - Completely unclear how he was feeling
NOW - Extreme difficulty with people being sad, but otherwise communicates emotions when asked and occassionally unprompted

Diet
THEN - Ate a variety fruits and some vegetables, typically 1 grain and either chicken nuggets or peanut butter as protein.  Enjoys snacking 2-3x/day
NOW - The exact same except for less snacking due to snacks received at therapy as motivation in particularly M&Ms!

Sleep
THEN - only "put down" by Dad, takes 1-3 hour nap 4-5x/week typically from falling asleep in the car.  Sleeps 8-9 hours/night, waking at 5-6AM, sometimes screaming
NOW - introduced weighted blanket early on and since that time has starting sleep for about 10 hours, rarely wakes upset.  He no longer takes naps.

Cognitive/Academic (some examples)
THEN
Alphabet-   sometimes left out letters    
Counting -  sometimes skips number, count to 20  
Sorting - none                                                       
NOW
Alphabet - sings his ABCs, knows all sounds, identifies words by letter sounds
Counting- can count to 50-60, counts with 1:1 correspondence, identify recpetively
Sorting- understand sorting by color, size somewhat

Fine Motor
THEN - used utensils sparingly, but preferred finger food; made mess of liquids like yogurt, eat out of hand; strong aversion to properly holding pencils, coloring
NOW - still likes finger foods; will use utensils regularly, but need to remind not to also use hand (bites are too large), pre-writing skills are on age, but can see aversion leading to falling behind; doesn't enjoy coloring

Sensory
THEN - detested certain textures (slimy, dense, sticky, mushy), visual stimming, toe walking
NOW - will tolerate and even enjoy messy textures; tolerance will vary with mood; can work into textures (go from water play to slimy texture); improvement on visual stimming, but still looks in strange angle at times (look at my eyes command); rare toe walking or other physical coping tools

Our interventions have been documented in this blog and although we have tried a variety of therapies in the last year, we have simplified in recent months.  Deane received 12 hours of ABA therapy, 1 hour of OT and 1 hour of social skills group.  The rest comes from home with the help our "team"(aka - parents, sister, grandparents).

I decided not to get into problem behaviors extensively, but Deane's tolerance for schedule changes and transition has improved massively.  We are recognizing that many things we believe we have mastered come up once again if we don't remain consistent or because he is growing and changing.  We are very blessed to be working with our team of therapists and to have the family support to put in the needed effort.

One thing is abundantly clear to me after a year as an autism mom.  No one person could be skilled enough to give their (special needs) child everything they need.  I believe I am the best person to help Deane right now in many areas, but the breadth of areas of development mentioned above cover a wide variety of training and disciplines...and someone forgot to give me this manual when I left the hospital with my baby boy.  I must rely on God to inspire the information I need today to help Deane and the wisdom to know when I must turn to someone else for help. 

Kate Update

Kate turned 18 months on April 21st.  She is a joy.  So sweet and fun, but also wild and defiant. 

 She really likes her brother.  She is a little afraid of him at times, but also gets in there and pulls him down to wrestle with him at times.  We think she's pretty tough, but has figured out that crying out gets her the attention she's looking for.

Her red hair is always the first things people comment about.  It looks different shades all the time, but it is certainly maintaining its red hue.  I think she's a lucky girl.

She can be lovey, but doesn't want to cuddle for long period of time.  She has started throwing tantrums daily, but I'm grateful to have the behavioral theories fresh in mind from Deane to put in place with her.  It also helps that I care so little about others opinion of me that I can stick with ignoring a fit in public, etc.

When she is doing something wrong or dangerous and you shout to stop her or tell her to come back, sit down...whatever the case might be, she pauses and thinks about what else she should do besides what you're asking.  She basically disobeys 90% of the time in these circumstances.  Chris thinks she acts like one of us, not sure which one. :)

She says LOTS of things and constantly surprises us with her growing vocabulary including (but not limited to):
Ma/Mom Mom (good for Mom or Grandma), Dada, Papa, NeNe (Deanie), Cole (my sister Nicole), some form of Andy (my brother), Moosey (heavy on the lisp, stuffed dog named by my brother's Great Dane), Sun, Cool, Awesome, Yee-haw (while riding rocking horse), Moo, Who (for owl), heeee (horse sound), Hi, Dora (usually "Hi Dora"), Ball, book, Cuckie (cookie), cacake (pancake), nook cup (milk cup), water, baby, ipad, and many more. 
Her two word phrases are "Hi Ma, Dada, Papa", etc, "Cool Sun"

She thinks her Papa hung the moon.  For whatever reason, she is over the top excited upon seeing him.  She usually goes through excitement, playing coy and then cuddling him in a minute's time.

She likes to play instruments (in particular whatever anyone else is playing), she squeals, she like Bubble Guppies, Dora and most things her brother watches, she sleeps with a baby doll or Moosey most of the time, but doesn't have to have them, she likes reading, she loves eating most anything, and she is definitely going to be trouble.

She's so much fun and we are so grateful to be her mommy and daddy!

Being A Friend

I had hoped to have a well organized Autism Awareness Month schedule of posts, but since we are in the middle of a move (more about that in a future post), I will be sharing my autism messages more sporadically.  I'd like to offer the following story about being a friend:

On Friday, December 18th, 2010, I walked into my friend, Erica's home for a playdate with 2 year old Deane and 7 week old Kate, where we were cheerfully greeted by Maddison and Kylie.  The three "big" kids quickly headed for the basement as I was unloading baby Kate. (Their home is one of the few places I feel truly comfortable letting Deane play freely and the other kids really look out for him - such a gift!)

I didn't notice until she started speaking that Erica was nervous, but she started "Don't be mad at me, but I wanted to mention something to you".  She proceeded to explain that some of the characteristics Deane displayed reminded her of a family member with autism.

Although we had Deane "cleared" of any concern regarding his language delay at his 2nd birthday, I (and I now know others close to us) knew deep down that something was amiss.  Erica listened to me explain how we were aware of the potential concerns, but we had checked into it...he's a boy...it will work out.  She didn't try to convince me. The small seed let out what I knew in my heart and by the following morning I had spoken with our pediatrician (conveniently at our family Christmas) about scheduling our evaluation at the University of Iowa.

I can't imagine the courage required of Erica with the uncertainty of what these comments would do our 10+ year friendship with her and husband, Travis.  What brings tears to my eyes in telling this story is that she put my child first before herself.  There was no benefit for her in being right, but she loved us dearly enough to put our son first.  I have since heard from a number of people that either they are struggling with how to approach someone for whom they were concerned their child might have autism and also a couple "I can't believe he/she thinks my kid has autism".  To both the worried friend and the skeptical parent, I say, remember, this is for our children.  We must face extremely scary and unsettling things for them.  Why not have your child assessed without trying to sway the assessment?  Why not really look at the symptoms that might be displaying?  Being helpless, confused, afraid and angry is not something we can easily sign up for, but the days, months, or years that we don't invest in kids with autism Right Now will have an impact on the rest of their lives.  I say this humbly as a mother who lived in denial for several months.  Diagnosis isn't the end, it's the key to opening up help (in the form of services, insurance, school assistance, etc).  And perhaps a diagnosis isn't the answer, but if there is concern, there may skills that would be aided with speech, OT, etc.  The sooner we bravely begin the process of accepting the possibility, the sooner we can help our little ones.

Be brave and be a friend like Erica.