8

Happy Birthday Aiden!

Well, another year is upon us, and it feels like this one went faster than the last.  Aiden is now 8!  Reflecting on his life, and the experiences we have had since his diagnosis, I can only find gratitude for all the help we have had.  We had to fight hard for it, but it came, and Aiden is better for it.  

Aiden still receives therapy 6 days a week.  At this point, it is mainly focusing on coursework.  Aiden has a really hard time focusing and participating in activities he isn't really interested in.  I get it.  To come home after a 7 hour day of academics only to be forced to work on spelling words and math once again--sigh.  He is struggling though.  He needs the extra help.  He is very behind in reading, and that concerns us very much.  I don't want Aiden to fall behind, but that is the direction we are headed.  

I'm hoping we can decrease hours this summer and focus on reading and ADLs (activities of daily living) only.  Aiden doesn't seem to understand basic daily tasks are a necessity.  He enjoys brushing his teeth, but a bath to him is fun--not necessary.  I have to constantly remind him to clean himself and get dressed.  I'm trying to teach him some independence.  

Aiden continues to be a good natured kid.  He seems unfazed by the bully in his classroom, and actually has a lot more confidence than I did as a kid.  He loves Lego set characters and making books.  

We have discussed baptism and the principles of the Gospel that we hold dear to us often.  He doesn't seem ready to take that step, and that is ok.  I want it to be a decision he makes for himself--not one that I make for him.  

8!

Aiden's books!

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.