Personality

Who Farted?

New changes for Aiden!  Aiden's speech continues to grow by leaps and bounds!  He is not only starting to ask appropriate questions, but making more age appropriate comments.  The other day he said, "What smells like poop?"  "Who farted?"  I laughed so loud.  That was a typical boy moment, and AIDEN had it!  Funny how something so simple and crude as, "who farted?" can bring me to this post.  Aiden is not a typical boy, but he had a moment where he was, and just like the time he climbed the tree, the moment stood out for me.  He has more and more moments each day.  As the doctor said, "he was classic autism" at age 3.  Now he is not.  In fact, sometimes, to the adult who doesn't know better, he is just a little different.  

Yesterday we went to a classmate's birthday party for the first time.  Many parents left their children, but I would never feel comfortable with that--at least at this point.  Aiden wasn't quite sure how to handle himself.  He didn't quite know how to fit in.  I had to push him to bowl and interact.  It wasn't until the presents were opened that he seemed to "fit in".  His time will come.  He is young yet.  I have faith :).

We are up for reassessment in May, and I'm starting to second guess my thoughts.  Will Aiden benefit from another year of therapy?  He is making so many gains.  Will that continue if we stop now?  The psychologist seems to think we will qualify based on Aiden's new verbal aggression, poor food intake, and speech challenges.  I'm starting to think she is right.  Honestly, I just want to be done with it all, but I will do another year if that is what is best for Aiden.  It definitely will be more work for me if we lose the CHATT team, and I already have a full "plate".  Avery hasn't slept through the night once, and I barely sit down all day managing my home and kids.  I'm super tired at the end of the day.  I watch a show with Abe at 8, workout for 30 minutes, and pass out by 9:45-10 every night.  Could I do the therapy on my own for at least an hour 6 days a week...?  

Social Skills

Social Skills Success!

 

 

My how Aiden has changed!  I've come a little early a few times to pick Aiden up from his social skills class, and I'm so pleasantly surprised!  I overheard the director of the program turn to her staff and discuss Aiden.  "When he first started he barely talked..."  Then she saw me standing there and we shared our excitement over Aiden's progress.  What a gift.  I have tears.  My little boy is overcoming autism.  Where would we be without the Early Childhood program and our CHATT staff?  I know this could be much harder on our family than it is.  As I watched the class play "What time is it Mr. Wolf?"  I was sad to see another little boy Aiden's age struggle through his role as the "wolf".  That was Aiden years ago.  Unable to communicate effectively, unable to participate like his peers.  Aiden is a success story, but what about those who will live their lives consistently needing the help of another?  I feel a little guilty and sad about that, because I know Aiden will be a functioning independent adult some day. 

 

Aiden's temperament is emerging.  We have been with CHATT now for almost 2 years (reassessment in May), and he is so comfortable with his staff, he gets angry and rude with them at times.  This is not like Aiden at all.  I wonder if Aiden is sick of it all.  I don't blame him.  I'm tired of having therapists in our home 6 days a week too.  His behavior at school is excellent.  No negative "Dojo" points ever.  Teachers comment all the time on what a great kid he is.  Academically, he is doing amazingly well for a boy who could barely speak sentences not too long ago.  The looming question remains, "will another year of therapy help or hinder Aiden's progress?"  I've been praying and pondering about this very thing.  On the one side, I'm worried about regression.  On the other side, I'm worried he won't get enough time to play after school, to socialize with his peers, and to just be a kid.  When does Aiden just get to be a 7 year old kid?  Is it time?    

Waisman Center Day with the Experts

January 24, 2015

 

 

Notes from the Autism Conference at the Waisman Center

 

*1 in 6 in the USA have a developmental disability, a 17% increase from 1997-2008.

 

*Increasing diagnosis of autism, ADD.  1990 surge in autism diagnosis--1 in 68.  Social communication, restricted interests/repetitive behaviors.

 

*The term "mental retardation" from the 1960's is now "intellectual disabilities".

 

*Stem cells can be turned into neurons and other brain cells.  The hope is that these stem cells can help treat diseases of the eye, brain, spinal cord, and ear.

 

*Parental Verbal Responsiveness Can Facilitate Language and Communication in Young Children on the Autism Spectrum (title of one presentation).

 

--children learn language in a SOCIAL environment.

 

--parental responses are positively related to speech development in children (keep it positive, encouraging, elaborate on words used (i.e. BIG boat).

 

--study suggested that parental involvement helped most when the child was minimally verbal at age 2 1/2.  Otherwise, it made no difference in verbally fluent children.

 

*Motor Ability is one of the earliest predictors of an autistic disorder.

--low muscle tone

--highly prevalent

--difficulty reacting quickly

--balance/posture difficulties

--complex motor sequences

--diversity of motor skills varies by severity of ASD

--affected by corticospinal tract of brainstem?

 

*Quality of Life Study in Autistic Adults

 

--70% reported a good quality of life in adulthood (same as general population).

 

--80% were bullied in childhood, which was greatest predictor of poor quality of life in adulthood :(.

 

--Mother's reported they thought their autistic adult child had a poor SOCIAL quality of life even when the autistic adult felt otherwise. 

 

 



7!

Aiden is 7! 

 

 

We took Aiden ice-skating and out to dinner for his birthday.  Unlike our 5 year old, Aiden didn't get excited about the event until it actually happened.  I tried to get him excited by asking, "how many more days until your birthday?"  "When is your birthday Aiden?"  I'm not sure he understood the concept until we had cake and opened presents, but that is ok.  It was a special one!

 

Things I've been pondering about what is to come this year for Aiden and our family...

 

*Will he qualify for another year of therapy when he is reassessed in 4 months?  If so, will it help him anymore than it has?

 

*What happens if we don't qualify and Aiden regresses?  We've all become accustomed to therapists in our home 6 days a week.  It will be a BIG change for all of us.

 

Aiden starts a social skills class soon, which adds another thing to our schedule, but I feel it appropriate at this time.  I don't know what else to focus on other than his sight words and math facts.  His nutrition remains very poor, but I've fortified his diet the best I can, and we always encourage him to try a fruit and/or veggie every day.  He continues to have sensory issues related to foods.  Sometimes he says they "smell," and "I don't want to choke."  I'm not going to push the issue.  Hopefully with time he will try new foods.  He continues to grow so we can be grateful for that!

 

Aiden is preoccupied with figures from movies!  We now have the full sets for Winnie the Pooh, Mario Brothers, Pocoyo, Star Wars, and Toy Story.  He can leave his toys as long as he knows where they are.  If one gets lost, it is a big deal for Aiden, and that can be hard on all of us, but we get through it.  Sometimes with patience, sometimes not.

 

We love our Aiden so much, and hope for a great new year of possibilities!   

 

 



Christmas 2014

I think our Heavenly Father pressed "fast forward"!
 

I really can't believe how fast the time has gone by.  Looking back at pictures of all the families we are blessed to know, and how quickly our little ones have grown is surreal.  I remember when we were fighting hard to get Aiden in therapy, I was seeing a therapist to deal with it all, and we were just getting used to having people in our home.  Now, Aiden has been in therapy for a year and a half, I no longer need to see a counselor, and Aiden's therapists are a "normal" part of our lives.  In fact, it will be hard to say "goodbye" to them when Aiden completes his therapy.  On a good note, he has made so many gains this past year, he may not qualify for further therapy.  I'm concerned however, that the significant change in routine will cause some regression, and that would make me very, very sad.  Now that we have insurance, I'm hoping that will pay for some post-intensive work. 

Right now Aiden receives therapy 2-3 hours per day, 5-6 days a week.  We play a lot of games, do projects, work on sight words, and his math.  It is hard to believe he went from barely putting words together to writing sentences, reading, and doing simple math problems.  In fact, he is quite good at math! 

Instead of the non-verbal, quiet, inattentive Aiden we once knew, he has become an animated, fun, silly, boy who loves stuffed toys, and plays with character toys appropriately.  I wish I would have documented the change on video.  It is that drastic.  I read about such changes from therapy, and that is why I fought for it!  I know Aiden will always see the world a little differently, but that is ok, and I hope he finds friends that understand that.  I'm kind of hoping his little friend Fiona will follow him throughout grade school :).

Academically, Aiden is doing amazing!  Mostly 3's (meeting goals), 1- 4 (exceeding goals for creativity), and 2-2's (for "understands and uses content-specific vocabulary").  No surprises there.  Aiden still has difficulty forming sentences correctly, and continues to receive speech therapy through the school district.  
 

So, we continue with therapy for now, and wait until June when he gets reassessed.  A lot can happen in 6 months!  I will pray that what comes next is what is best for Aiden.

Making gingerbread cookies with Aiden's friend!

                                           
                                     

   

1st Grade

A note from Aiden's teacher...this made me cry...I'm so worried about him making friends and being teased for his "uniqueness," but so far so good!

 

"Aiden and Family--

 

I wanted to let you know that Aiden has done a great job adjusting to 1st grade!  He is a kind friend to others and always follows directions.  Keep up the good work Aiden! --Ms. Pope"  October 28th, 2014

 

I'm so proud of Aiden, and I'm very grateful for his even temperament and gentle soul.  Some days I want to keep him in a bubble, but I know he needs to learn and grow without me too. 

Bambi and Tigger

 

Just when I was thinking that Aiden didn't need therapy anymore...sigh.

 

 

Today was a very challenging autism day, and begs the question--at what point do you try to change the odd behavior or ask society to accept it???

 

 

We had a beautiful program in our church today from all our youth.  I cried.  It was very sweet and spiritual to hear the little voices singing some of my favorite church songs.  Then, a close friend and her family of 8 (soon to be 9) got up to sing together.  It was a shining moment as I looked at them and looked down at my 2 little ones, grateful that Heavenly Father's plan for me was much different than mine.  Austin happily sang and signed along with the conductor, while Aiden had Bambi propped on his head while making strange faces.  My husband was upset that I let Aiden take his stuffed animal with him.  Stuffed animals are Aiden's comfort.  He always has one with him or waiting for him (he doesn't bring them to school, but comes home and picks one or 2 up right away).  He gets super uncomfortably upset when he doesn't have 1 or loses one, so I chose my battle.  I also didn't expect him to put it on his head.  Abe says he needs to stop.  "I don't want him teased."  But stuffed animals are a part of who Aiden is.  At what point do I stop trying to accommodate autism?  Or should I?  I personally think people need to accept his uniqueness.  Yes, it was a little distracting, but I still felt the spirit of the program, and isn't that what mattered?

 

And, it wasn't over....

 

After church, we went to my mom and dad's.  Of course, I took them to the park as usual.  Aiden brought along Tigger this time.  I didn't realize he had it until I saw him playing with him in the sand as I was cuddling the baby.  He was digging a hole, hiding Tigger, then bringing him back out over and over.  Suddenly, Aiden came to me sobbing.  "I LOST TIGGER!"  So, I did what we always do when he loses his stuffed animal (this happens OFTEN).  Through his tears, we prayed together.  Heavenly Father, Aiden is sad.  Can you please help us find Tigger?  It always works for us.  After a short search, we find the missing toy.  Not this time.  For some reason, that is not what the Lord wanted for Aiden.  I searched, Austin searched, Aiden searched.  For the life of us, we couldn't find Tigger in the sand.  Mind you, this was no small stuffed animal, and it was ORANGE!  Finally, I had to tell Aiden that we had to go back to Grandma's.  Oh that was awful.  Aiden screamed, cried, and lost it completely.  I loaded up the other 3, and started to walk back.  Aiden eventually followed, pulling at the stroller and screaming, "I want to find Tigger!  I WANT TO FIND TIGGER!"  He tried locking the stroller wheels to get me to stop, but I pressed on.  There was nothing I could do.  We prayed.  We searched for over 20 minutes.  We prayed again.  What could I do?  Still screaming we got back to Grandma's and I asked Abe to sit on Aiden.  Deep pressure helped us before, and it helped again.  Aiden finally calmed down.  Abe grabbed a rack and took Aiden back to the park.  No luck.  Tigger was really lost.  He must have buried him DEEP!  Later after dinner, Grandpa AND Grandma went out to try to find him.  Seriously, it just wasn't meant to be.  How do you lose a medium sized ORANGE stuffed animal in the sand???  What was Heavenly Father trying to teach Aiden?  A lesson in loss?  A lesson for us?  Will he remember this moment years from now?  I don't quite understand why Heavenly Father wouldn't give back Aiden's Tigger this time.  However, lessons in faith aren't always understood at the time they come. 

 

AUTISM...you are part of our lives for good, and will always be a part of who Aiden is.  Sometimes I wish I understood it better, and sometimes,  I just want to take it away.