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

Another month passes...

The following is a super random grouping of the last month's activities.

Sweet (and wild) Kate is still on the move.  The thumb in her mouth is a tale tell sign that she's getting tired.  At 16 months, she's increasing her vocabulary everyday.  More recent word additions include "book", "moo", "shoe", "sock", but her favorite continues to be "NO".  She says something that sounds like "iiii uhhhh" which appears to be the equivalent of pointing and saying "this one".

She's an extraordinary eater with a seemingly endless appetite.

I've been really enjoying taking them to new places, particularly museums.  They see so much that we don't notice.  They are certainly on the move!

Kate kept running into the plexiglass this particular day... poor girl.  Kate also has a LOT of personality in nearly all situations.  She did a little dance around this octopus inching closer each time.

 This is Deane posing by the Bison.  He kept telling the bison to "say cheese buffalo".  At the point of this visit in late January, he liked to tell strangers "buffalo drink water".

More silly girl...

Deane continues to be extremely fascinated with dinosaurs so we visited the dinosaur exhibit at the Peoria Arts & Science Museum.  It wasn't particularly geared for little ones - lots of simulators, but it was still fun.

Deane doesn't like brushing his teeth, but he LOVES looking at himself ;)

Pretty much every day in our house involves building a large and elaborate train track system.  It's getting a little out of control.  All house visitors know that they will have to step around or through the daily train and if Deane is awake, you will be recruited to play trains.

 I have been trying to get serious about our homeschool activities and work to prepare Deane for whatever is next in his education.  I save most of the ideas I find here.  We have been having lots of fun and also learning more about what challenges Deane.  Here's a sampling of our activities.

The final result of our sensory bowl!

Finger paint in a bag - works for any age.

Use your hand or a brush.  I would suggest taping the top of a bag that a toddler is using :)

Fine motor pouring activity.  Two cups and a jelly pan.

We just watched Bee Movie yesterday and ended up visiting the Hurstville Interpretive Center today to see their snake exhibit to find they have a living, working bee hive that you can inspect with a magnifying glass.

A couple "Deane-isms" lately...

"I want no please" - which means I don't want to do what you asked.

"Excuse me" - used to get attention or ask someone to go away

"I want to cuddle" - I love this!!!!

Unprompted, albeit from repeated past prompting, he says "Good Morning", "Good Night", and "I love you".

We tried to start listening therapy, but wearing headphones isn't going well.  We have work to do.

We are moving in April sometime...details to follow as the date approaches.

Catching Up

It's been a month since my last post.  It's occurred to me several times that it had been a long time, but I haven't felt compelled to write or craft or report on autism.  I don't like to do things out of obligation (this has only changed in the last year...I never liked to, but I often did things out of obligation) so I'm only now coming back to write some thoughts down.  Sorry for the randomness of topics.

I came into 2012 very positive.  I felt like we, as a family, have learned much in the last year about the irrelevance of "things" and the relevance of so many intangible parts of our lives.  I still have high hopes for this year.  Unfortunately, in just the small community I grew up in, there has been much pain and sadness at the loss of special people.  Theirs is not my story to tell, but I finally feel that my heart is in the right place to recognize God's guidance and direction in these inexplicable tragedies.  I feel my mind turning to prayer upon news of something scary or sad before worry creeps in.  I'm ecstatic about this and feel hungry for more. 

My current mantle
Here's where I found this printable: Source

We have also been doing a bit of school touring as we're planning to move in the coming months to a new district. I am unsure of when we will send Deane to school, but we want to be in the right place when that happens. We have been doing some home school programming. It's been very limited, but positive.  I am starting to see Kate's "smarts" showing up as she picks up details or responds to words I had no idea she knew.  This is exciting and I look forward to learning more about how my two little ones learn best. 

Sweet Kate often depicted by our photos...she is sweet, but...

"Real" Kate who we often refer to as "wild woman" :)

There is some hub bub about a proposed change to the definition of autism by the American Psychiatric Association.  The idea is to consolidate the broad autism spectrum, but the concern is that this will disqualify many from services.  The linked article actually states that up to 85% of all PDD-NOS diagnosed (like Deane) may no longer qualify for diagnosis.  This is only an issue for us if insurance would not recognize his current diagnosis and cover services that we are only now hoping to get covered (maybe I'll tell that story in another post).  We used a small amount of these services last year (ABA) along with our speech and OT and our insurance was raised the maximum amount.  I share this only to create further understanding.  The results of this potential change will be revealed over time, so we shall not fret.

Deane has been lucky enough to participate in a swimming program for special needs kids run by local high school and college students.  There was an article with a few photos of him in the local paper last week.  (Notice, there is one comment on the article.  I couldn't agree more with it. LOL)  It's an awesome opportunity and we are impressed with these great kids (both students and teachers).  This last weekend was their end of session party and Deane "jumped" off the diving board four times.  We're proud parents.

Jumping..

Teachers and students

I have also gotten back involved with the Erika Kate Foundation, helping with marketing.  I took a hiatus after Deane's diagnosis to get a handle on our life, but I feel lucky to be jumping back on board of this amazing organization.  EKF assists families of children with life threatening cardiac illnesses by providing spiritual, emotional and financial support.  Erika Kate also happened to be the daughter of my cousin, Traci, and her husband, Rich.  They co-founded the organization not long after Erika passed in 2006 and today are helping families in several heart centers across the country.  It is particularly special for me to help because Traci has always been a role model for me and throughout her life, she always made time to be a part of my life.  I'm so grateful to have anything to offer EKF.  In a recent email to me, Traci thanked me for helping out and said "I know there will be blessing in it for you, dear one."  The line struck me as something a wise character in a movie would say to someone just beginning a journey.  It felt like it will apply not only to my time with EKF, but my outlook on 2012. 

Blessing for you and your family too!