Tuesday, December 30, 2014

Why

Why?
That's the question I have been asking myself lately. Why? Why my boys? Why me? WHY?
I was at a good point in my life before we moved where I had fully accepted everything. I accepted autism and what that life was like for my boys and for myself.  Did I like it? No!!!! But that is life. It's not fair. It is what it is. God never promised us a smooth sailing life.

Now since we have moved, I am asking that question all over again. WHY? I know I will never know the reason why. I want what others have so bad it hurts. I want both of my boys to look me in the eye. I am so thankful that Andrew does but I mourn everyday over the fact that Trenton is unable to. It's been a long time since Trenton has looked at me. It's been a long time since we made eye contact. I long for the moment that it will happen again. I never know when it will happen.

I want to hear Trenton say, "Mom." I want Trenton to tell me what he wants to eat. I want Trenton to tell me he loves me. I want Trenton to play with toys. I want Trenton to smile and be excited over a fun family day together. I want him to be potty trained. I want.....I want....I want.....

I want Andrew to be able to communicate better. I want Andrew to not suffer from OCD to the degree that it controls his life on certain days. I want Andrew to be able to control his behavior. I want Andrew to understand emotions. I want Andrew to be potty trained. I want...I want..... I want...

So what do you do when you want something so badly that it controls your life? What do you do? What do you do if it means that you have to completely change your life? And that change is the only thing that was left of your dream. The small amount of a dream that you had left because everything else was shattered from autism but the one small thing left was still there. What do you do if the only thing left to help your sons is giving up the small dream left of yours? What do you do?

You give it up!!!!!!!!!!!!!!!!!!!!!!!!!!!

God made it clear that you do what you have to for your children and for others.

John 3:16
 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

Christ suffered the horrible death for us. Therefore, I can give up my dream of living in the country in my awesome hometown. My town that showed us more kindness than any other town in the world! I can give up living so close to my family who helped us so much! I can give that up for my boys! The tone was set in the Bible. I can do this!!!!!!

It's not easy. I still cry everyday and I will for awhile. My faith has got me through it. Reading the words of the Bible have helped me get through this difficult time.

It will always be difficult! It's awful to see my boys suffer daily. It's torture to see them cry to go home. It's a living nightmare!!!!!!!!!!!! I am in pain watching my boys want to go "home." But, we are use to pain in our life. We suffer pain everyday.

We will get through this. I appreciate the prayers and love that I have received during this time from many of you.

A good friend told me the other day that she read once that this life is the closest a Christian will ever come to Hell and the closest a non-believer would ever come to Heaven. How true is that!!!

Monday, December 29, 2014

DVDs

I wanted to share these pictures real quick. On Christmas morning Trenton was making designs out of his DVDs.


While at home, I can't remember the last time Trenton has played with a toy. He only wants his DVDs. Its a nightmare what he does with his DVDS. I have to insert a DVD and he watches for two minutes....I have to take out the DVD and put in a new one....and it gets repeated over and over......

Quick Update on Move

We made it to Terre Haute. The boys and I are miserable! MISERABLE!
I know change and autism is not a good mixture. In fact, when major change happens in a person with autism it usually causes regression for a while. A few weeks before we moved, Andrew was already in a bad phase and now he really is.

The first night in our new home on Saturday, neither boy slept good. Trenton was awake at 1:05 AM and went back to sleep at 6:30 AM. Andrew was awake at 3:30 AM and went back to sleep at 7:00 AM.  The second night was much better. Andrew was awake for about one hour having a rough patch and Trenton slept ok once he was able to settle down.

Trenton keeps on taking my hand to the door and saying, "shoes. go." This is his way of saying, " lets go home. I've had enough of this new house." Trenton's behavior has been really bad when he gets mad the past 24 hours. He is hitting me, kicking items, and throwing items really hard. This morning on our way to Harsha, I thought for sure he was going to bust out his side window in the car. He just kept on kicking at the window crying. My nerves were gone by the time I walked into Harsha. I walked in and started crying. I am literally crying all the time and every where I go lately.

Andrew wants me to constantly hold him. I have to be right by his side at all times. I'm not sure if he is scared in the new house or its just how he is handling it. Andrew says a lot, " I want to go home." In fact I took him to Wal-mart on Sunday afternoon to buy laundry detergent and a few other items. Andrew's autism comes out in a different way than Trenton's. Andrew did not want the cashier to touch our items and ring them up. Andrew leaned his head back, started yelling and crying when the cashier touched his toy. He screamed at the top of his lungs, " I just want to go home." Tears filled my eyes and I said, "I do too."  I have no doubt the cashier thought we were crazy....

We have no internet at our house so post may be fewer until we get internet and a routine going.




Friday, December 26, 2014

Christmas

We had a good Christmas!

Andrew was all smiles bright and early ready for his presents!


The boys enjoyed opening gifts! This was the first year that Trenton was interested in the gifts. It made me so happy!!! Last year he opened gifts off and on for two weeks. I had to follow him around to try to get him to open a gift but this year he loved it!





After we had our own Christmas at home, we went to Nana and Pops house for a big brunch and more gifts! Trenton did well all day. I was worried since he woke up at 3 AM for the day but he did really well at Nana's house








Dear Autism

Dear Autism,

 I have read the books and literature on how you destroy a family. Not only do you take away everything from an innocent child but you destroy the family. You destroy a family's dreams and hopes.  You destroy so much more than the innocent child that you decided to live in.

I lost a lot of dreams when you chose Trenton and Andrew. I have been doing the best that I can to beat you. I have been doing the best that I can to prove to you that you will not conquer my boys. But in order for me to show you how much I want to win over you, I am forced to do away with the one dream that I was still living and that is raising my boys in my hometown surrounded by a community that has proved to us over and over that they care about us. You have forced me away from my parents who have became my rock in life, my grandparents who I love more than this world, and my brother and his family whom I had countless dreams of watching our children grow up together. You are taking Andrew away from these people!!! You are forcing me to take my boys away from their cousin whom they were going to have so much fun growing up and playing with. You are forcing my boys away from their cousin who was going to watch over them when I couldn't be around. You are taking us away from our nice home in the country next to Nana and Pop.

I have shed more tears this week than I have in a long time.I could fill a river with the tears that I have shed lately. In fact, I woke up this morning with swollen eyes. I looked like a monster. I cried so much on Christmas day and night that I didn't even look normal. I held myself together until I hugged Grandma. We embraced each other and didn't want to let go. We cried. It's hard to leave the ones that you love. But I am willing to do it to conquer you. I pulled myself together fairly well this morning and Trenton and I left for Terre Haute. Once we got in the van and headed down our normal route there, the tears came back. I cried off and on the whole way there. I cried my make up off.  At one point I realized every vehicle was passing me as if I was siting still. My van was like the tortoise and all the other cars traveling was the hare. I was so overcome by grief on my travels, I realized I was driving 55 mph on the interstate which explained why every vehicle was passing us.

Oh yes, my emotions of the move went in full force on Tuesday. I tried to go to the BMV in Terre Haute to change my drivers license and to get an Indiana plate on my van. I could say that this was the point when everything sank in to me. When I sat down to give the lady all information and papers that she needed, she informed me that I needed just one more piece of paper with my new address on it. I had a piece of paper with my husband's name on it but that wasn't good enough even though she was holding my marriage license that clearly says that  I am married to Tim Conrad. Nope, she still needed one more item. Well, I didn't have that item. What happened next was like a scene from a movie. Uncontrollable tears came gushing down my face while clenched my jaw.

"I understand where you are coming from and that you have a job and have to follow the rules. Therefore you have to understand why I can't control my tears right now. I am moving to this state for my sons who have autism. I don't even want to move to this state. I am a sleep deprived special needs mother who has such precious time. Now I have to come back on another day which means I will not meet my deadline that I have to have this done for. I don't even understand what I have to do next with my house but all I know is that I have to show someone my license with my address on it to save me some money but it has to be done by the end of the year. Now I can't meet that deadline." I cried out while looking like Alice Cooper with black mascara and eye liner all over my face.

She looks at me as if I am a crazy woman. "Angela you can come back tomorrow. I am so sorry."

I go on to tell her that I can't come back, I grab my items crying profusely. I walked out of the BMV with all 20 other people staring at me.

You have made me an emotional basket case, Autism. I hate you! I hate everything that you have done to my boys, my family, and myself. We will rise above you Autism! You are working against a warrior mother who will die putting up a good fight against you. You have me in such an emotional state right now but I just want you to know that it only makes me stronger. It only makes me more willing to do EVERYTHING possible to make sure that you will not be able to enter into other's lives. It makes me more willing to do everything that I can do make sure we find a cure against you. You made a mistake choosing my children. You. Made. A. Big. Mistake.
Sincerely,
A Warrior Mom

Wednesday, December 24, 2014

You Are Not Alone

To the parents who feel a small portion of sadness this time of year, you are not alone.

To the parents who simply wish they could have a Christmas tree with ornaments on it, you are not alone. Our tree was decorated the first day and destroyed by the first night it was up.

To the parents who want to hear their child tell them what they want for Christmas, you are not alone. My body thirsts to hear those words from Trenton.

To the parents who want to put Christmas presents under the tree but can't due to their child's autism, you are not alone.

To the parents who crave to see their child get excited on Christmas morning because there are presents under the tree, you are not alone. I want so badly for my children to have that excited feeling on Christmas Eve like I had as a child.

To the parents who miss family Christmas celebrations because your child  can't handle the sensory overload, you are not alone.

To the parents who yearn for normalcy everyday of your life, you are not alone.

To the parents who feel an overwhelming feeling of sadness just by looking at happy Christmas celebrations on Facebook or T.V, you are not alone. My Christmas celebrations are spent controlling my child with severe autism. It takes every minute of the celebration so why even go when there isn't one drop of enjoyment?

To the parents who are too tired to even enjoy the few good moments of the holiday season that you might have but can't due to sleep deprivation, you are not alone.

You Are Not Alone




Autism Night Before Christmas

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

Tuesday, December 23, 2014

New House

We stayed in our new house again on Monday  night. Andrew did much better this time. However, Trenton had a bad night. Trenton woke up at 1:03 AM and never went back to sleep. We would appreciate many prayers as we start this new journey in our life. I guess its a combination of holiday stimulation, new moon, new house and new schedule because Trenton's sleep is at its worst. Therefore, this post is short and sweet because this Mommy has lots to do and I am beyond tired.


The boys had a fantastic two days at Harsha. They even got to open a few presents today at Harsha!!!



Sunday, December 21, 2014

Blessings

My two blessings!!!
I can't believe I got a picture of both looking at the camera!!!!!!!!!!!!!!!
Always and Forever boys!

Saturday, December 20, 2014

Christmas with Grandma and Grandpa

We celebrated Christmas with Grandma and Grandpa today!!! We had a great time and the boys loved their gifts!!! Andrew kept on asking for more presents all day. He sure knows what presents are!






 Andrew is in hog heaven with his Lightening McQueen toy box!!!

 The boys love their chairs from Aunt Jenny and Uncle Sol!

 Trenton giving Grandma some love!!! We all love these moments!

Dentist & Doctor

I keep telling myself that taking Trenton to the doctor and dentist has to get better sometime. But, its simply not getting better yet. In fact, it keeps on getting worse.

I knew Friday was going to be a rough day. Trenton had a dentist appointment at 9:30 followed by a doctor appointment with his developmental pediatrician. Trenton's dental appointment was a check up. The dentist simply wanted to look in his mouth and make sure everything was fine since his surgery two weeks ago. I told Trenton repeatedly that we were on our way to the dentist. Of course, he doesn't look at me and never responds so I have no clue if he knows what I am telling him or if he understands it. But I do it anyway. Honestly, I think he hears me but he does not have the ability to really think about what I am telling him and is unable to prepare himself.

The car ride went rather smoothly all the way to O'Fallon. Once I got about a half mile from the dentist office, Trenton knew exactly where we were headed. He started crying, fussing, shaking his body from one side of the car seat to the other, and was trying to undo his belt so he could get out of his seat. It was one of those moments where nothing I could do would calm him. Therefore, we made a dramatic entrance into the office. Trenton was screaming with huge tears rolling down his cheeks while I was forcing him into the door. I tried three times to let go of his hand to sign his name in but he was out the door before I even put the pen to the paper.
When I find myself in situations like these, I forget all common courtesy and politeness. For example, I know right where the treats are for the kids. The heck with asking nicely if I can have some for him, I just walk where I am not suppose to and grab them. Of course I get the looks from the staff and I know they are thinking, "Did that mother just do that?" I give them my look back that says, " Yes I did that and I will keep on doing it if I have to. Wanna trade me spots and see what you would do? I don't have these sweat pits under my shirt for nothing in the dead of winter!"

Our name finally gets called. We walk into the dental room and get started. I'm sure the sounds from Trenton's dental room portrays to the outsiders that we are brutally killing someone. It took three adults to hold him down for the dentist to simply look inside his mouth. Have you ever seen a movie where a patient is strapped to a bed in a mental ward that is trying to escape from his straps? You know....where they are twisting their body, raising their backs, hands, and head trying with all their might to escape the chains while they are trying to bite the person standing nearby them and spitting everywhere? Well, that was my son on Friday. I had to be one of the adults to help hold him down. Why in the world do places make the mother help in this task???
After the traumatic experience, the dentist looks at me and says, "You have to go through that just to brush his teeth?"
I replied with a quick, "yes."
She says, " Well you need to see if you can have some people at your house to help you every night because he needs his teeth brushed daily."
I kinda laughed and said, " Well calling for back-up every night just isn't possible."


We survived....not without some more scars but we made it through.

Next, it was on to Dr. Twyman at Cardinal Glennon. Since Trenton put up a good fight for over 30 minutes, it completely exhausted him. He took a nap from O'fallon to Cardinal Glennon. Once we arrived at the doctors office, his anxiety shot through the roof and once again he was fussing and crying. Luckily, this time I got him to calm down in the waiting room. However, that ended once his name was called back. The struggles continued again. Three different people tried to get his blood pressure but everyone failed. His fight was too strong for grown adults.

The majority of this appointment was Mommy talking to the doctors about his progress, sensory problems. hyperactivity and impulsive behavior, communication, and anxiety problems. Dr. Twyman said what I have said all along that his anxiety is driving him to be extremely hyper and impulsive. When he is at any other place other than home, he manages his anxiety good. It appears to others that he is managing himself well, but he really isn't. He works hard on shutting things out and is not able to filter out everything which leads to wild, hyper, and impulsive behavior at home. When he is home he is more relaxed so he releases from his day. Neurotypical people do this too....we do it by watching TV, having a cup of coffee, reading a book, or just whatever makes you feel good. Trenton is not able to unwind from his day like a normal person can so he goes wild.
The doctor decided to increase his anxiety medicine to see if it helps. She thinks Trenton is a case where he is going to need a lot of different medicine to help his anxiety, hyperactivity, and impulsive behavior. However, due to his age, we are just trying to see if we can get anywhere with just one medicine for that particular area of his autism. We will take it and see how he does on a higher dose.

All in all, our Friday was a very rough day. As always I ask myself..." Will it ever get better?"

Sleeping from dentist to doctor. He sucked on his blanket till he fell asleep.

He rarely lets me snuggle him. When he was calm waiting for his name to be called at Dr. Twymans office, he let me snuggle him. Of course, I had to take our picture. 

 His DVDs are his securities the past few weeks. He takes them everywhere and lines them up. Its his way of making himself feel better and secure when he isn't at home. Here are his DVDs at the doctor....

These are from therapy earlier in the week. He placed one in every seat. It was a good thing we were the only ones in the waiting room.




Friday, December 19, 2014

I LOVE YOU!

Last night was the first time Andrew spontaneously said, " I love you."
I was rocking him to sleep and he looked at me, smiled and said, " I love you." I can't express how sweet it was to hear. I have heard him say it numerous times but it is always repeating after me. Last night was a huge night!!!!!!!!!!!!!!

ECE Classroom

Yesterday afternoon we had Trenton's Christmas party in his ECE classroom. As always, Mommy attended and Nana went this time too. We had a great time watching Trenton at his party. However, we had to say goodbye to them too. Mrs. Edwards and Mrs. Jenny have been Trenton's ECE teacher and paraprofessional the past two school years. They have been fantastic with him! I can't brag enough about these two ladies. We have been very blessed to have had them impact his life like they have.  They both LOVE what they do for a living and it truly shows when are they around Trenton and the other children.

 Since special education was my major in college, I have a lot of knowledge on IEPs and what I want on my child's IEPs, etc. Again, I can't brag enough about Mrs. Edwards and how she would take to heart what I wanted for Trenton and did what she could to make it happen. The children in Flora that attend her class are very lucky. She not only had a great influence on our time with her but I know she does everyone who has her. We will miss them greatly and I know Trenton will too! He loved and looked forward to Mrs. Edwards class every Wednesday and Thursday.
Thanks so much ladies for allowing Trenton in your classroom the past two years!


Christmas party pictures!
He got a gift from his teachers!
 Playing a cute snowball game!



 Trenton's amazing team at the ECE classroom! We will miss you ladies.

For the record, Trenton did a great job hugging everyone goodbye yesterday at Olney and his classroom. He even hugged his classmates...it was so cute!

Thursday, December 18, 2014

Olney!

We had a grief-stricken day. We had to say goodbye to our family at Olney. Two and a half years ago  in August 2012 after Trenton's diagnosis, his first therapy placement was at Richland Memorial Hospital. I was referred to them by Trenton's EI team. It was the best referral of my life!!  Trenton was diagnosed one week before I was due to start a new school year at North Clay. I was in a state of shock and grief. I was trying to manage setting up a new speech therapists and occupational therapists for Trenton, battling insurance...while getting ready to start another year teaching 4th and 5th grade special education students. I did nothing but cry. I was so sleep deprived I had no idea how I managed to put one foot in front of the other most days.

Since I was trying to work at that time, my mom, Nana, took over Trenton's therapy schedule. She drove him to his speech and occupational appointments weekly at Olney. I kept in communication with his therapist over the phone or through Nana. At this stage in Trenton's life, he didn't utter a sound other than blood curdling screams that could crack through glass in an instant. He would kick and scream walking through the therapy doors. Nana was Super Nana and battled through it. By December, I had resigned and took Trenton to therapy myself. Soon it was me that was fighting the battles of getting him to walk into the building after a sleepless night. It was Mommy that would battle getting him into the therapy room and listening to him scream bloody murder. Unfortunately, all I could do was to sit, listen, and cry....and believe me I cried A LOT at Olney! Thank goodness over time, Trenton got better and loved going to therapy. Don't get me wrong, he still had plenty of moments the 2 1/2 years we spent there twice a week but the progress he has gained there is phenomenal!!!
Two and a half years ago he didn't say a sound, screamed at strange places, didn't understand ANYTHING, never slept a wink, and cried a lot. Now he can repeat many words on good days. He is great at using, "I want" on most days after much prompting, is starting to understand a lot more, and will walk into strange places. I could make a huge list of what he can do now but couldn't then. My point is....our therapist, who I call our family at Olney, had a huge role in this!

Therefore, it was a very emotional day saying goodbye to a group of women who became more than just therapist to us. They became our family. On many days, they were my therapist too! I have shed countless tears at Olney. I shed many of tears to his therapist and the front desk ladies who put their duties on hold and listened to me cry and vent! I can't thank these ladies enough!! They were there with us from the beginning of Trenton's diagnosis and Andrew's diagnosis. They listened to me cry over my worry of Andrew when I started suspecting that something was wrong with him. They were there for me when I needed someone. They not only loved my boys, but they loved me too. The feelings were mutual! I can't tell you how much I will miss these ladies! I will be forever grateful to them on having such a tremendous impact on my boys!

As this chapter in our book closes, I can't help but thank the good Lord who placed these people in our lives!
We love you ladies!!!


  After their therapy session today, they had a party for the boys!




1 John 4:7-8

Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God.
He that loveth not knoweth not God; for God is love.

There is A LOT of love these ladies displayed to us and vice versa!

Tuesday, December 16, 2014

Top 75 Blogs for Speech Pathologist to watch in 2015

My blog is # 30 out of the top 75 blogs for speech pathologist to watch in 2015!!
YAY!!!! Here is the link to see the blog on the list!!

http://kidmunicate.com/top-75-speech-pathology-websites-for-2015/#sthash.EnKJVPKI.dpbs

No new house. I want to go home!

We stayed in our new house in Terre Haute on Monday night. We didn't get hardly any sleep. Trenton took a long time to settle down. While Trenton paced the new house trying to settle down for the night, Andrew was sleeping. While Trenton was sleeping, Andrew was awake, crying, and saying, "No new house. I want to go home!" He didn't just say this one time....he said it a thousand times. Mommy was holding back my tears while I questioned myself over and over if I made the right decision to move.....
In between his pleas to go home, he would cry out, "Mommy I want to go home and rock." (he still likes to rock with Mommy)
I knew the move would be hard for the boys, especially Andrew. I am not sure if I am prepared for what I have in store for myself. I guess we will find out when we move permanently after Christmas.

Sunday, December 14, 2014

Harsha Pictures

Here are a few pictures of the boys from Harsha the past few weeks!






I am going to do a post about therapy in general as soon as I have the time. I can't express how much therapy is helping my boys. There is no guarantee that therapy will work but there is no guarantee on anything. There is no guarantee on chemo for cancer patients.  All we have to do is pray and have faith and hope that it will work. I have no doubt that it is for my boys. Some parents swear by supplements, special diets, and detoxing their kid. I swear by therapy!!! Every child is different but I hope my blog can give other parents some hope that therapy can work. It's not going to cure them but it can make a difference!