Medicaid

The Waiting List is no longer...

We waited 2 1/2 years for the therapy we knew Aiden needed--the same therapy I read over and over again that changed the lives of so many young children diagnosed with autism.  The science says the "sooner the better," but we had to wait.  Without insurance to pay for the therapy, we had to wait for the Waiver Program.  They said the wait was a year long--it was more than double that time.  Imagine our joy when we were finally done waiting--only to have our dreams crushed when Aiden was denied therapy after his assessment.  What a roller coaster of emotions!

Things are changing in January 2016.  Medicaid will now pay for all autism services.  No more waiting list.  The family chooses the provider, and the provider gets the authorization from Medicaid for reimbursement. 

There is a positive and negative to almost everything, so here it is:

Positives--

1. Even though this was Aiden's last year on the Waiver Program, he may be able to continue with therapy after June 2016 given the new funding.  Let's see how Medicaid feels about Aiden's progress!      

2. No more forced hours of therapy.  At this point, we HAVE to get 40 hours a month, otherwise we are kicked out of the program.  

Negatives--

1. Providers will no longer be reimbursed for travel, which means they will no longer serve certain areas that are too far from "home base".  Some families may be forced to move.

2.  At Aiden's level of functioning, he will require a person with a Bachelor's degree in a communication field to work with him.  Hiring employees in that field for after school hours is going to be very difficult for the providers.  Will they be able to hire enough qualified people?  At this point, Aiden's "behavior coaches" are not required to have a degree.  

I know everything will work out for the best in 2016!

My son

Aiden worries....

Now--for the first time--Abe is starting to express his worry for our son's future.  I think a big part of the worry is because of his profession.  He is worried that Aiden will go into "special classes" and will slip through the cracks if we don't speak up.  In 1st grade Aiden was starting to READ and WRITE, and was meeting every milestone from an education standpoint.  Now, I'm worried.  Things are getting harder.  His spelling tests are challenging for him.  He forgets to bring the spelling lists home, then when he does, we work, work, work with him, but he still gets only a few correct even though he missed 3 or 4 when we test him at home.  I don't know what to do.  Aiden gets help from me AND a therapist for 2-3 hours a day except Sundays.  There isn't anything else to do from our standpoint.  I've discussed things with his teacher, and so far, the lists still come home late.  This will be the first parent teacher conference I want Abe to come to.  I need his support and expertise in the field.  What is going to help Aiden now???

I WAS WRONG.  AIDEN NEEDS THERAPY!

Aiden's nutrition is worse than ever.  He looks sick to me.  He appears pale, and his eyes still reflect that something isn't right.  I wish I could find an affordable supplement for him, but I've been looking, and I can't find one!  If I had more time and resources, I'd develop one myself!  He doesn't like gummy vitamins, and the liquid Omega 3's are too expensive or taste awful.  I wonder if that would help him focus and concentrate.  The science says it will help.  I know it won't fix everything, but I do believe it will help.  Something.  Give me something that will help him!  We all had a bout of something awful--gastroenteritis at it's finest--and Aiden got it the worst.  I was up all night cleaning up poop and puke.  The poor kid.  How can I expect his immune system to fight back when he eats so few foods?  Still no fruits or vegetables, no meats, barely any jerky or nuts, only certain kinds of bread (not the healthy ones)...thank goodness for popcorn, yogurt and Ovaltine with milk!  This Dietitian needs to work some magic.  I wish I had some right about now!

2nd Grade

It feels like we skipped 1st Grade!

It is surreal that I have a walking baby, a 3 year old, a child in Kindergarten, and a SECOND grader!  My boys have grown so much, and the older I get, the faster time seems to go.  

I spoke with Aiden's teacher yesterday to see how Aiden was doing.  Aiden gets preoccupied with his pencil sharpener, so it was taken away.  That explains why he asked me about it, and I didn't quite understand why he was asking.  He did have a "thing" for our electric pencil sharpener as well, so I wasn't surprised by this.  He has a difficult time staying on task at school, so they use PECS (the picture exchange system) to indicate what Aiden needs to do to follow along with the class.  No wonder she put him up front.  Aiden's teacher thought it was so neat that after every spelling word on his test, he drew a picture that corresponded.  I have to admit, as a second year teacher, I'm impressed that she knew so much about autism, and how to help Aiden.  That makes me feel good as a mother.  I made the right decision sending him to school and keeping my ties to Adams School.  Although, I'm ready to move on from this house, I'm grateful Aiden has some consistency here.  Living across from the school has been a great blessing for all of us.  Nine years ago in June I pulled up to this house without even looking at the inside, and I knew it was going to be mine.  I see the Lord's Plan now :).

I have introduced my oldest boys to the world of Harry Potter.  Aiden of course, loves it because of the magic and the unique characters.  I wonder some times if he has a hard time with what is real, and what is not.  He asked me about God's relationship to monsters.  I had to explain that monsters aren't real.  They are simply part of creative stories.  Man, I love that boy!  I think he could be an illustrator and/or writer someday with his imagination and attention to detail.  He continues to create the characters he sees/connects with in movies.  I wonder when Harry will be next...

Therapy is hard on Aiden.  He has a hard time staying on task, and completing his homework.  He needs rewards or consequences to do the things he should do: make his bed, clean up, put shoes and clothes away, do homework.  This isn't unusual for a child--I know--but Austin is the complete opposite, so that gets challenging.  

Life is good for our family.  I feel like I get more rest, and I have more balance in my life.  Our family is complete, and that feels good.  Financially, we are slowly getting back on our feet, and that feels great too.  I'm hoping we can put Aiden and Austin in karate next year.  This year, Aiden is doing swimming lessons, and Austin is doing tumbling.  Evenings are long, but I'm grateful I have my boys to hug and kiss at night.  These precious moments are fleeting, and before I know it, my boys won't need me like they do now.  I love my crazy life :).         

Summer 2015

It was a summer of school, swim, fun, and of course, therapy!

Our Pool--Aiden did better in 1 private session of swimming lessons than he did in 2 years of summer swimming through the School District!  In 1/2 an hour, he could back float and hold his breath under water without plugging his nose.  I wish money grew on trees...we were blessed to have funding for this, but it was just cut :(.  

The Splash Pad was a success again this summer!  Here, Aiden's tooth was so ready to come out!

Movies in the Park--Frozen

The Zip Line--the boys love this!  Aiden is the only one who doesn't need help.

Turtle Island with Dad

Paddle Boating with Aiden's favorite therapist :).

The Zoo--really great NEW bear exhibit!

Camden Park Show--balloon animal from Bucky the Clown

4th of July Freedom Fest

Rock County Fair

Six Flags Great America--the in-laws spoil my boys!  

Aiden came home and drew all the characters he saw :).  This is his new hat, but he quickly switched it out for the Chuck E Cheese one he won't take off!

Aiden LOVES Avery.  Just loves him!  He is always holding him, walking with him, and talking to him.  In the morning, he will entertain Avery in his crib until I get out of bed.  It is precious.

My first 5K of the season.  My boys cheered me on!

Avery's 1st birthday party.  I love this picture of my children!

We were blessed again this summer.  We had a ton of fun, but now I'm ready for school to start and a healthy, new routine for our family.  One more year of therapy (?) + 2nd grade for Aiden, Austin starts Kindergarten, Ashton needs to be potty trained, and hopefully Avery will sleep through the night!

The Hat

Aiden LIVES in this hat!

From the time he wakes up, until the time he lays down...Aiden is wearing this hat!  After taking a shower once, I hide the hat.  I swear, less than 10 minutes later he was asking for it.  Our in-laws bought him a new one, but NO.  It is THIS hat that works for Aiden.  He is not allowed to wear it in school, and we don't allow it in church, but as soon as he can put it back on, he does without fail.  I'm so curious how long this will last.  Usually, it is a stuffed animal or figurine that Aiden brings with him at all times, so I don't really mind the switch :).  

In other news, Aiden was denied disability by the Social Security office, and I'm happy about it.  As far as I was concerned, they paid for all that testing (I didn't ask for it) for nothing.  I could have told them my son is NOT disabled, nor do I want to abuse the system and take money that could help someone else!  

Aiden lost his 2 front teeth this summer, and continues with therapy in addition to swimming lessons (after a few weeks of summer school).  Aiden is struggling with swimming lessons.  He loves the water, but doesn't get that he is supposed to be learning to swim, not just having fun.  We are starting him in a special needs swimming program next month.  The School District swimming lessons aren't enough, and because Austin is in his class, it isn't really working out.  They play with each other too much, and Austin mimics what Aiden does :(.  I can't blame Aiden for struggling.  If he got my genetics--yikes--I'm not a strong swimmer at all!  I don't care if he can swim laps.  I just want him to be safe in the water!

DSM 5

Aiden had his mental health "test" this week to determine his "disability".

The doctor opened the DSM Manual and proceeded to ask Aiden a series of questions:

Spell cat backwards.

What day of the week is it?

I'm going to give you 3 words.  In 5 minutes, I want you to tell me what those words are.

Do you get along with your friends?

What is your name?

When is your birthday?

This was the first time Aiden and I had a moment together without the other boys in a long time.  I wondered why Aiden seemed to have every marker of autism at this particular moment, but when at home, I don't see it like I did in that tiny room.  Am I missing this because I don't want to see it?  Am I missing this because I feel completely maxed out as a parent of 4 children?  With his therapist, he responds to questions well, but this time, Aiden struggled pretty badly with even the questions I knew he could answer.  I know this is in our Heavenly Father's hands.  Maybe this needed to go badly so Aiden can continue with his therapy?  

Is Aiden still autistic based on the new DSM?  I think I can say for certain without knowing the results of the eval.  The answer is YES.  

Year 3

YEAR 3 ABA THERAPY

Aiden qualifies for another year of therapy, and we are in the process of being evaluated for disability.  Is autism a disability?  Well, it can be classified as such.  I can't help but think--if we didn't use the Waiver Program, "disability" would NEVER be attached to my son's name.  Yet, the therapy we receive from CHATT really made a difference in Aiden's life, so I can be grateful for that. Will it continue to make a difference?  Is it really necessary for Aiden to continue to succeed?   I prayed and left the evaluation in our Heavenly Father's hands.  I know he knows best, but I was kind of hoping he improved enough that he didn't qualify.  That way, our insurance would take over and we wouldn't be forced to do 40 hours a month anymore.  I want Aiden to have a SOCIAL summer.  Let's face it--being stuck in a chair for 2-6 hours a day limits your options in that department.  My husband feels like he needs it.  He said, "who else gets free one on one tutoring like that?"  1) it isn't FREE, 2) I truly believe I could have done 1-2 hours at least 4 days a week on my own, focusing only on the things I think he needs to work on, not what the Program says he needs.  I want him to read, write, and make friends, just like my other boys.  The preoccupation with characters is just part of who Aiden is, and I'm ok with that for now (let's hope he doesn't have a stuffed animal obsession in his teens).  No one can fix his nutrition right now, so that is what it is...I pray that improves with time.

Negatives: 1) some days we will have SIX hours of therapy a day, 2) It is weird having the therapist just sit there during our family meal, 3) therapy limits pool/fun/social time!

Positives: 1) we can't get these hours back, so we need to be grateful and embrace them, 2) I learn new techniques/projects to do with all my children, 3) some days will be just ours to have fun! 

  

Art

Aiden's newest preoccupation is creating his own characters from movies/books!

Danger Rangers

Angry Birds

Star Wars

Harold and the Purple Crayon

Super Mario Brothers

The Jungle Book

????

Holy cow!!!!

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!