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.

We Celebrate Knowing

Today, March 21st, is the one year anniversary of the day we spent in five appointments at the University of Iowa only to go home with a PDD-NOS (Autism Spectrum Disorder) diagnosis for Deane.  This is a day of celebration for me because knowing the answer to many of the questions and concerns is so liberating!  April is Autism Awareness Month and it will be celebrated around the year in so many ways but here are a few ways you can celebrate it:
Light It Up Blue - on April 2nd, homes and buildings around the world will "light it up blue" by placing blue lights in their exterior light fixtures. 
Learn What Autism Is - knowledge is always he first step to advocating for others

Help your kids become advocates for other kids with autism - Because every child is different, this is no easy matter, but a parent's attitude toward kids with special needs will shape their child's behavior.  There are a number books about autism for kids like Ian's Walk: A Story About Autism. You can explain:

• Children with autism need friends just like other kids
• People with autism need others to be patient with them because they may not communicate as easily or have trouble with sensory input that don't bother others
• Some people with autism have trouble with change of environment or schedule.  It helps to warn them and understand their behavior may be related to this.

Wear it on your sleeve (or shirt) - The puzzle has come to symbolize autism and can be found in ribbon form.  I would be happy to send a puzzle ribbon to anyone who would like (just tell me where to send it).  "The puzzle is said to symbolize the mystery and complexity of autism. The different colors and shapes represent the diversity of people and families living with this developmental disorder. The brightness of this awareness ribbon signals hope. Hope that through research we will soon identify the causes and a cure for autism. And hope that through increasing awareness of autism, with the disorder will lead fuller and more complete lives."
Participate in a Walk Now For Autism event - these are held all over the country at different times of the year.  It was held at the end of April in the Quad Cities.  Many smaller market walks are not listed on the linked site.
Specifically in our local area, we work with two great non-profits that serve kids with autism.  The Quad Cities Autism Center (providing ABA therapy to kids with autism) and Children's Therapy Center of the Quad Cities (who serve children with all types of disabilities) have both been extremely helpful in supporting Deane's growth in the last year.
In the year we have been living this autism family life, we have learned so much about what families endure.  We are extremely lucky for many reasons, the greatest of which is the transforming experience that has allowed us to more fully understand and help our son.

I plan to share more about our autism experience in the coming month.  We have to get celebrating!

Two Moments to Remember

I had two great moments this week that I don't want to forget.  Please note I'm inserting unrelated recent photos because I don't have any pictures of these moments...of course.

Discovering how to float balls over the air tubes at Rockford's children's museum

#1 On Thursday, Deane,Kate and I were running errands with my mom.  We went to a local mall which just happens to have a train that is large enough for adults and children to ride in.  It drives through the mall and is a favorite activity of Deane's.  To me, favorite activity usually equals meltdown upon having to discontinue the activity. 


on Niabi Zoo train - another favorite activity, but this year, it appears we don't like the whistle

On Thursday, I was prepared to sit on the train for however long it took to get the errands done, but it wasn't running at the moment so instead Deane, Kate and I went to the play area in the food court, another activity I tend to avoid in fear of an altercation with another child over whatever.  But something miraculous happened.  Deane played with first one little boy and then another little girl and then another couple boys.  He played!  He even led some of the interaction.  I took my seat (I usually hover a bit to make sure things aren't getting out of hand) and just watched, cherished the moment.  I overhead him saying "Boy, let's run!" with glee.  He had enough language to play with these 3-5 year olds for about 30 minutes (admittedly, it doesn't take a lot).  There was never an instant where he looked like he wanted to hit someone.  There was no crying or screaming.  He couldn't care less what Kate was doing (the answer was performing her first full on public tantrum, but that's another story). 

She immediately moved the sunglasses to top of her head the first time I put them on her.

When he was hot and pink-cheeked, he came for some water.  He hesitantly agreed to leave to look for the train.  He rode ONE time with my mom and got off with out melting down to come and find me.  He even tried bubble gum while we were at the mall.  These seemingly simple parts of many children's days are milestones for us.  I'm so grateful!

bad photo, but I love this boy and you can kind of see the faintest smile here...he doesn't hate it when I hug him :)

#2 Last night, Chris and I were lucky enough to go on a "date".  It was gorgeous.  We sat outside at the Boat House and watch the skyline fade and the stars come out.  What crazy, wonderful March 16th weather! 

It's water table season!

On our way to the grocery story before heading home (because we're in our 30s and that's what we call a date), we heard "Lead Me" by Sanctus Real.  This song has always spoken to me even though the focus is on a father's role in a family.  In listening, all of these thoughts flashed into my head.
That someday I will be telling my kids that it wasn't until I was 31 that really started to understand what it means to love Jesus first before anyone, even our family.  (I'm not saying this is easy or I have it figured out; only that I can now understand that this is possible and what I want.)
That it's so important for Chris and I to create a family that leads our children in the direction we hope for them, but that they will test that and stray from that path.  That I don't have to keep them from those experiences because I have seen that it is only through hardship that many of us actually come to understand what life is truly about.

I found so much comfort in these thoughts.  Parents, and in particular special needs parents, must protect our children from danger and unnecessary hurt, but recognizing God's role in this is freeing for me.  I have a WHOLE lot of work to do in this area, but I wanted to remember having these feelings for the times when it's not so evident.

Kate trying to get away from me while I take her photo

If you've read my blog for awhile, you are probably sensing that there isn't going to be a lot of consistency in my topic choices.  I'm kind of all over the place with my crafting and interests.  Thanks for sticking around :)

Deane inspecting his own face in one of those things that people had on their desks in the 80s that you could push your hand through....hmmm hows that for a description