Deacon's TALKING!!!

It's been a billion years since I've written a blog, but I thought this post would be the most appropriate way to enter back into the world of blogging: our 4 year old Deacon is talking!!

"Happy Birthday"



"Audrina's Deacon's Girlfriend"



"Deacon Labeling"

Week of Progress

 

 

Deacon deserves to celebrate!! He has kicked butt this week by accomplishing two HUGE milestones!!

 

First up, feeding himself with a spoon:



 

He has been practicing at therapy, and this week Deacon blew us away by grabbing his spoon and getting all of the food in his mouth with each bite!  He was so proud as we cheered him on!

 

 

Now that he is sleeping well in his new room with Carson and also knows how to climb in and out of his crib, we figured it was time to convert him to a toddler bed.  Look how huge he looks standing next to it:

He had no problem climbing in and out

...or jumping!!

 

 

It brings tears to my eyes to see how far he has come!  There are so many unknowns with his autism and epilepsy, that no milestone is promised.  It feels amazing to be able to check a couple off the list.

 

 

Way to go Deacon!! 

 

(PS- Have you noticed what a ham he is for the camera!?!)  

ABA Therapy Update

I can't believe it has already been over a month since our first blog on Deacon's therapy. What's even more amazing are the changes we see from him daily.



So, what's he doing??




Where to start...

For the first time in over a year he is saying "dada"!!! (I couldn't be more thrilled for Brian)

He is now eating his meals in a booster seat at our dining room table, instead of strapped in a highchair.

He is able to make so many sounds there are too many to list!! He can even roll his r's, which I can't even do! At school yesterday he imitated the m sound 25 out of 26 trials!!

With the help of his therapist, who stayed at our house until after 11:00pm, he FINALLY transitioned into the room with Carson!! With this milestone, some other age appropriate ones followed, like escaping from his crib and opening the door to leave their bedroom...I now hear him on the monitor in the morning and by the time I make it into the living room, he is meeting me there!! So next step will be turning the crib into a toddler bed!

The biggest shift has been his ability to understand! Prior to therapy, I'm not sure that he knew anything we were saying to him. Deacon can now shake his head and play peek-a-boo on command. When I was pushing him on the swing the other day I asked if he would like to jump on the trampoline and he immediately jumped off the swing and walked over to it!! This morning I said "look at the baby" and he walked right up to Bennett!!

He can sign for "eat" and does it consistently. You can tell that he is so proud of himself each time he does because of the huge smile on his face.

His demeanor has changed to. He approaches everyone for play and will follow me around the house and tug on my clothes to be picked up. He gives at least one kiss almost every day (not on command, just when he wants to) and many of them have gone to Bennett and me. :)

The name of the therapy facility is "Reason for Hope" and couldn't describe it more accurately. For the first time in at least a year we truly do have reason for hope. Hope that he will communicate, even talk. Hope for him to be in mainstream classrooms. Hope that he can one day be an independent adult. I haven't slept this well in so long.

"And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort."

2 Corinthians 1:7

Autism Report: The Good, the Bad, and the Ugly

I met with Deacon's autism doctors, who recently tested and diagnosed him, to go over their report. They were very nice and wanted to make sure I didn't have any more questions. They skirted around the issue when I asked what end of the spectrum he was on, saying that they didn't like to put a label on it because children with mild autism needed intervention the same way those with severe autism did and didn't want to send a mixed message to parents.

They handed me the 15 page report. I asked if I could stay in the room to read it, since my wonderful neighbor was watching the boys and I wouldn't have any interruptions. I obviously am not going to type all fifteen pages on here, but at least want to sum it up.

The Good:
Social Interactions- Deacon has improved eye contact, will play in the vicinity of other children, will initiate physical play with family, and displays appropriate range of facial expressions.
"When the examiner entered the room, Deacon didn't acknowledge her, but eventually approached her to touch her id badge and play with her hair. He transitioned to the examination room with minimal prompting."

"Deacon remained seated during the entire test without problem. He seemed to enjoy watching the toy car roll across the table and occasionally pushed it back towards the examiner."

"Deacon enjoyed participating in activities such as peek-a-boo, free play, and being lifted and tickled by his mother."

Communication- Deacon appears to understand some simple and/or gestured commands, like clapping and waving.
"Deacon reacted to loud noises, but his response was somewhat delayed. He also turned and coordinated listening with sound."

Repetitive and Stereotyped Behaviors- Deacon does not show a need for routines or upset with transitions.

The Bad:
Social Interactions- Deacon does not engage in parallel or initiate play with other children, doesn't initiate spontaneous joint attention (which means looking at an object that someone else is looking at or pointing to), doesn't respond to his name and is hard to get his attention, and doesn't engage in pretend play.
"Deacon appeared to be less engaged during tasks that required interacting with the examiner or engaging in pretend play."

"It was difficult to catch Deacon's gaze during the assessment and he rarely directed his gaze towards the examiners face."

"Deacon did not respond to his mother's attempts to make him smile until she physically touched him."

Communication- Deacon shows delays with receptive language, does not show, point, give, or bring items to others.
"Deacon did not appear to recognize his name, familiar words, or inhibitory words. His expressive communication consisted primarily of vocalizations. He made few vocalizations that were mainly vowel sounds, without any consonant reduplications. He did not point or gesture to indicate preference and it was difficult to catch and maintain his gaze."

Repetitive and Stereotyped Behaviors- Deacon shows an intense interest in musical toys, engages in repetitive behavior of dropping items on the ground, tapping surfaces with his hands, flaps hands when excited, mouthing objects, eating non-food items (dirt and paper), and visual inspection of toys.
"Deacon was observed to engage in self-stimulatory behavior with a water bottle (eg. mouthed, bit, and rubbed on his face and feet). Deacon approached his mother, showing sensory interest in her feet and sandals. He was also observed to repeatedly jump while flapping his hands coordinated with high pitched vocalizations."

"Deacon dropped the majority of items on the floor in a repetitive manner. He was not able to grip a pencil or crayon and attempted to eat the paper. Deacon licked multiple test kit materials throughout the evaluation."

The Ugly:
Because it was so hard to administer tests on him due to his deficit in communication and vision and difficulty engaging, his scores came back horrible.

Visual Reception- 6 months. He was able to coordinate problem-solving and fine motor skills to look for a hidden object and retrieve a distal object by pulling a string to bring it closer. He did not show interest in a book or attend to pictures. Also, he was not observed to look for an object hidden and then displaced.

Fine Motor- 10 months. Deacon used appropriate pincer grasp and two hands together to manipulate objects. He was also able to take blocks out of and place them into a container. He did not bang objects together, place pennies into a slot, or imitate simple lines drawn.

Receptive Language- 3 months. He showed the ability to attend to his environment, including listening and turning, responding to faces and voices through vocalization, and coordinated listening with looking. He was not observed to enjoy a reflection of himself in a mirror, recognize familiar words or names, or attend to words and movement.

Expressive Language- 5 months. Deacon laughed, made vocalizations, and played with sounds. He was not observed to babble, or produce three consonant sounds.

Autism Spectrum- The ADOS test results indicate patterns of:
1)Moderate to Severe Concern
2)Mild to Moderate Concern
3)Little to No Concern

Deacon's score was consistent with a classification range of Moderate to Severe Concern. :(


The report also gave suggestions of things to work on at home, and goals for teachers, therapists, and even IEP goals for when he enters school. It also again suggested ABA therapy, but more, 25-40 hours each week. We have worked out the insurance information, and will have to pay a $30/day co-pay. What's hard is that Deacon still needs naps each day, so it's not like he can have an 8 hour day of therapy. I think we will start with 3 days a week of like 6 hours a day, but we meet with the clinic on the 25th and will decide then.

The Scarlett Letter

This "A" represents a different meaning than Nathaniel Hawthorne intended, but still has its own share of stigmas and life-changing effects.

Autism.



Deacon has autism.



Even though I first suspected he might before his first birthday and have had doctors on the fence since then, it still felt like a huge blow after all the progress he has made and hope that we have held onto. Brian was especially taken back by the news.

Now looking at the signs and symptoms, how could he not? Below are many characteristics for autism. The ones highlighted in yellow are parts of his personality now, the blue are some he has had in the past, but is beginning to overcome.

We spent 4 hours at his appointment at the Autism Center. They asked us a million questions and observed Deacon. The doctor immediately picked up on things we haven't paid much attention to, like how he flaps his hands when he gets excited.

They took Deacon and I into a room with toys scattered on the floor. His doctor said each toy had been specifically chosen to see how he would interact with it. I was not allowed to talk/play with Deacon unless asked to do so, so I just sat and observed. First he was overwhelmed by the clutter in the small room, and began pacing circles around the room whining. The doctor asked what was wrong and I explained that because of vision issues he was probably nervous he would trip on the toys. The doctor tried engaging him with many of the toys, and even ones I would have thought he would be interested in, he paid no attention to. It was eye-opening to see him in a different environment where I couldn't interact with him. I know he does better with me at home, but didn't realize how bad it was outside of our environment. I held back tears. She tried to get him to play pretend by bathing a baby doll. Deacon ignored her most of the time, and at the very end, took the doll and chewed on its hand. She poured crackers and fruit snacks onto a plate for "snack time." He flipped the food off the plate and put the plate in his mouth.

Before they even gave us the diagnosis, I knew.

We are fortunate that he is not aggressive, is easy-going, and enjoys being around others. The doctors say this will help therapists/teachers work with him because he is so easy to love.

We haven't been told the severity of his autism (ie. what end of the spectrum), but will hopefully learn more at an upcoming appointment. The doctor told us it is great that we caught it so early, when therapy is the most beneficial. Most studies have been done on the benefit of therapy for children age 3+, so he is ahead of the curve. Dr. Voight thinks it's possible that with ABA therapy, Deacon could one day lose the autism diagnosis.

So what now?

ABA therapy is our only hope at making big changes. Unfortunately, it is VERY expensive. Like $50/hr. expensive. And the doctor suggested AT LEAST 20 hrs/week to be effective. Because we both work, we make too much money to receive help from the government. (We are on the waiting list for the only assistance he could receive. The wait is 8-10 YEARS.) The boys are on Brian's insurance, and I just found out that his insurance doesn't cover it. Luckily, because we just had Bennett, I am able to add the boys b/c of the life-changing event. It appears my insurance does cover it, but how much, I'm not sure. It could only be a couple of hours a week, or have a cap on how much they are willing to pay. Even 20% of $1000/week is going to bankrupt us, especially now that we will be spending $300/week to have two kids in childcare.

It looks like we may have to do some fundraising to get help for our most prized possession. I will do whatever it takes to give him every resource available. I just hate that Brian and I both work hard and pay taxes, but aren't eligible for any benefits our government provides because we make too much, but not enough to cover costs.

2 steps forward...

1 step back.

Well, more like a giant leap back.

Today was Deacon's check-up with his neurologist. Dr. Foster is the 5th neurologist we have had experience with, the first who wasn't connected to Texas Children's Hospital, and the only one we have loved. He shows a real interest in Deacon and strives to find a cause, even when the seizures seem to have disappeared with medication. The doctor said he has thought about Deacon since his last appointment because his case is so perplexing. He still doesn't fit into any cookie cutter epilepsy diagnosis, so we are going to do a few more genetics tests.

Dr. Foster asked lots of questions about development and was most concerned with Deacon's speech. I told him we had been waiting for his hearing test, and when that was completed we hadn't heard anything about the Speech Evaluation from ECI. He suggested Deacon be evaluated and start receiving services.

He asked if Deacon had been diagnosed with autism before. I told him about our first visit to his pediatrician when this all began and our original concern for autism, but with the epilepsy and vision issues, they seemed like a likely explanation for the autism symptoms. He said that with Deacon's limited vocabulary, verbal, and non-verbal language; lack of initiated interaction and imaginative play; and some repetitive behavior leads him to believe Deacon has AUTISM.

Ugh.

It seems like the visits that the initial bad news has been given are the times that I tell Brian not to bother taking off work, and I take Deacon alone.

The wind was knocked out of me.

Dr. Foster thinks the autism is caused by the epilepsy, so there is hope that his improvement will exceed that of a typical child with autism who has no other symptoms or cause, and by the time he is 8 or so he may not have any issues. He was impressed with Deacon's eye contact, smiling, and improvement since the seizures stopped.

When I called Deacon's ECI Case Manager after his appointment, she was surprised by the news, especially with all of the vision issues, so I am eager to hear from his Vision Specialist and Neuro-Opthamologist as to their opinions. We are also about 6 months in on the one year waiting list for Meyer Center for Developmental Pediatrics where Developmental Specialists will weigh in.

The news sucks, but my faith couldn't be stronger. The first thing I did when we got in the car was open up the Bible App on my phone, to the verses that have reminded me of God's promise:

My friends, be glad, even if you have a lot of trouble. You know that you learn to endure by having your faith tested. But you must learn to endure everything, so that you will be completely mature and not lacking in anything...God will bless you, if you don't give up when your faith is being tested. He will reward you with a glorious life, just as he rewards everyone who loves him.

James 1: 2-4;12

God has gotten us this far and I have no doubt that Deacon is exactly as he should be. I also know that Deacon has conquered all other labels assigned to him and continues to amaze us every day with his improvement.

Please continue to pray.

Deacon

At Deacon's 9 month check-up his doctor asked us to fill out a questionnaire about Deacon. He scored high in every area except social and fine motor skills. His doctor didn't seem too concerned, but asked us to work with him on getting him to do activities such as waving and clapping.


Over the holidays I became a little more concerned when seeing babies younger than Deacon smiling more when looked at and feeding themselves. Brian reassured me that everything was fine and that he had just been so focused on learning to walk that he would pick up those other skills soon.


Last week Deacon started going to Carson's daycare and by Thursday the director stopped me when I went to drop them off and asked if we had ever had Deacon's vision checked before. I told her that I think they did at the hospital when he was born, but not that I knew of since then. She told me to speak with his teachers to get further information on what they are seeing. Basically they repeated the same difficulties that I had noticed: lack of eye contact or tracking of objects, no interaction with toys or other people, and not feeding himself. They suggested we get his vision tested and I was thinking more severe: Autism.


In between crying spells, I went to work and got busy. I am fortunate to be a teacher because schools have such a wonderful variety of people and resources. I stopped by our nurses office and received information from her and steps to take to get started figuring out the issue.


I called and scheduled an appointment with his pediatrician and another to have his eyes examined. Our government has an amazing program called InfantSEE that pays for eye exams on babies. My friend also suggested contacting Early Childhood Intervention. They are through the state of Texas and do evaluations and therapies on young children who are delayed in some areas, and will even come to your home or daycare to help.


The pediatrician and eye doctor appointments were scheduled for today so Brian and I had all weekend to stress and watch over Deacon terrified of his future. We prayed constantly.


This morning we went to his doctor first and expressed our concerns. He was wonderful and listened to everything we had to say and came up with a plan. Next week he has an EEG and MRI, and we are waiting to find out when his hearing test will be.


Next was the eye doctor appointment. I had no idea how you could even check the vision of a baby, especially ours, who doesn't look where you want him to or track items. The eye doctor was so patient and took her time working with him. She first held up these paddle boards with stripes on them to see if he would track them; he wouldn't even look at them. Next she looked in his eyes with a light. She could tell by the way the light reflected back at her as to whether or not he needed a prescription. She immediately saw that he was near-sighted. She then dilated his eyes and we waited 45 minutes for it to kick in and checked his eyes again. The doctor saw then that he is ALSO far-sighted! Poor baby can't see close up or far away!


We worked to find the correct prescription and then created a practice pair of glasses by taping the lenses to a baby frame. He was so tired by this point, but we were able to put them on and put a toy in front of him. For the first time he tracked it with his eyes and reached for it!! The doctor and I cried together.


Our little guy will be getting glasses and see the world he has been missing out on for the past 11 months!

And will look something like this little girl in 5-10 days when they arrive (except in gray):



We have no idea if this will be the cure for all of our concerns, but we are hoping so. If not, we will face the obstacles as they come.