Monday, June 30, 2014

Doctor Appointment

Trenton had a check up with Dr. Twyman in Saint Louis today. It seems like lately he has had one disastrous event after another. Today was just another day to add to his list.
 Trenton had a TERRIBLE night last night which lead him to sleep for a very short bit on the drive over today.  In fact it was the first night in a long time where I had both boys up at the same time.
Once we arrived at Cardinal Glennon he had to get blood work the first thing. Trenton was calm walking up to the hospital but once we stepped our first step into the hospital his anxiety took over and it was all downhill. He was panic stricken and could not stop crying until we left the hospital. Of course, there is always a wait but I came prepared this time! I had a new toy for him and he loved it. It calmed him down for a few minutes while we were waiting. He still cried but it was a calm cry.

When his name was called back I had to conduct that "tough love" that I have to do almost daily and hold him down. The nurse that was taking his blood was amazed at how strong he was for an almost 4 year old. In fact she said he was one of the strongest kids with autism that she has seen.

Once his blood was drawn we left the hospital and went to Dr. Twyman's office. As you guessed, he had anxiety again and cried almost the entire time. The visit with her focused on his anxiety problems. She agreed that his hyperactivity and impulsive behavior comes from his huge sensory and anxiety problems. She prescribed a new medicine in hopes that it will help his anxiety. Nothing has helped him yet so we have to be getting closer to the right medicine to help my poor child, right? 

Playing with his new toy at Dr. Twymans's office.

And it had to be one of the hottest days of the summer too. By the time Trenton and I were on our way home I felt like a sweaty, mentally and physically exhausted special needs mom who had no choice other than to be the energizer bunny.

Sunday, June 29, 2014

Count your Blessings

A stranger came up to me one time when I had the boys at therapy. This individual could tell that both boys had special needs. She looked at me and said with a smile, "Count your blessings. They are beautiful blessings that you have been given."

I smiled back with tears in my eyes and said, "They are the best two things that have ever happened to me."

My oldest blessing, Trenton, had some amazing moments today even after a sleepless night. On the way home from church we sang our ABC's together and he looked at me the whole time! He was not looking through me, he was looking at me!! I saw that beautiful soul that is behind those gorgeous eyes. I would sing A, Trenton would sing B, Mommy C, Trenton D, and so forth. We were completely connected and it was beautiful!
We did the same thing with Old MacDonald. I sang the whole song and I stopped when its the part to say the animal and Trenton said a different animal 5 different times. Again he was looking at me the whole time!!!

Aunt Mindy said that Trenton had great eye contact with her when she was swinging him this afternoon. His eye contact was great with almost everyone today. Such an amazing day!!!! Only autism moms can be so happy about eye contact!!

The good Lord blessed us today as always!

Life is full of ups and downs, so put your hands in the air and enjoy the ride.

 Life is a journey. If you got everything you wanted all at once there would be no point of living. enjoy the ride, and in the end you'll see these 'set backs' as giant leaps forward, only you couldn't see the bigger picture in the moment. Remain calm, all is within reach; all you have to do is show up everyday, stay true to your path and you will surely find the treasure you seek.

Facebook

I have decided to open a Facebook account. For over a year now my mom keeps telling me that I need to open one because people contact her on there trying to reach me because they have either heard about the boys, want help themselves, or want to send me a helping hand. I know there are numerous pages on Facebook for autism awareness that I want to be a part of. It'll be just another way that I can advocate for the boys. Plus, I have many plans for the future on ways to help others that walk in my shoes and I will most definitely need a Facebook page at that time. Therefore, I have a Facebook page. I am not sure now if it is going to be a Two Brothers One Journey page or what yet but that will be decided in the future.


4 Wheeler

This past Wednesday after therapy, the four of us were outside. Andrew was enjoying his new 4-wheeler. Trenton got on for 30 seconds. Literally it was 30 seconds. It was just long enough for me to ask Tim to get his phone out and take a picture. By the time Tim took the picture, Trenton was off and had nothing to do with the 4 wheeler since.


Saturday, June 28, 2014

Visit

The boys had a good day.
They had  a visit from Grandma and Grandpa this morning. They brought the boys a soccer ball and the 2014 World Cup Mascot from South America!


 Andrew looked at books with Grandpa.


Andrew likes to bring books up to Tim and I. He has got really good at saying, "Read book Daddy." or "Read book Mommy". He has heard us say this so much its become natural for him to say it when he wants to read a book.

Friday, June 27, 2014

Andrew

Many children on the spectrum do not play with toys appropriately. Trenton hardly ever plays with toys appropriately and Andrew will at times. However, Andrew has to play with someone to play appropriately. If he is playing by himself, this is how he plays...










And when he dresses himself, he looks like this...

Thursday, June 26, 2014

Therapy and Sleep Update

Overall, we have had a great week in therapy.

On Monday Trenton had a session of ABA with Alicia in our house. She has done a fantastic job with him the past few months on getting him to use the word "want".
During her session with him she was drawing shapes on a piece of paper and having Trenton imitate what she was doing. On the left side of the paper she drew a circle. Trenton drew his circle on the rights side of the paper and then continued to draw a person. He said "eyes, nose, mouth, ears" while he was drawing. I think he did a fabulous job!!!


On Tuesday mornings Trenton plays with our high school friend for one hour. Trenton enjoys playing with her still and I could not talk more highly of this individual. She always listens to me and does exactly what I tell her to do. We will miss her when she goes off to college in August.
Trenton went on to have a really good session with Heather in Effingham on Tuesday and for Stacey in music therapy as well. Both Heather and Stacey received a few moments of eye contact with Trenton.  Trenton had a really good work ethic on Tuesday. I was very proud of him!

Wednesday morning both boys had therapy in the morning like usual. Andrew continues to work hard in speech therapy with using, "I want" before he says what he wants. Andrew usually has to have a verbal prompt in the beginning or he looks at his pictures that is in his speech folder. However, after a while he gets the hang of it and can say "I want" without being prompted or by being prompted with just simply pointing to the "I want" pictures. I still continue and will continue to do this at home as well. Jill is also introducing the meaning of "my turn" and "your turn". She plays with him and they practice taking turns with Andrew saying, "My turn" before his turn and "your turn" or "Jill's turn" when it is her turn.

Jill continues to use "I want" with Trenton during speech too. Trenton does very well saying " I want". He almost always needs a verbal prompt before he will say it. At home I either give him a  verbal prompt or show him the speech folder pictures and he will say it! Trenton will not use the words at all without being prompted.

Both boys had occupation therapy with Emily on Wednesday too. Trenton had a rough session in OT on Wednesday. I got to listen to him cry a good majority of the time. Trenton continues and always will receive a lot of sensory input during his OT sessions. Andrew did well in OT and is working hard on using his spoon and fork for Emily!! In the middle of his session with Emily, Andrew started singing "Jesus Loves me." How cute is that!!This is just another way that autism amazes me! It is very hard for Andrew to talk functionally. He can't ask a question spontaneously at all but he can sing a song that he has learned. Then again....Andrew's speech is primarily learned language and a song is learned language.

Trenton also receives an ABA session on Wednesday with Heather and this was where we went down hill. Right after his ST and OT, Trenton was very high strung. He was having some big sensory problems such as having a hard time feeling his body in space which leads to his movement disorder where he has to move, pace, and run constantly. This helps him feel his body. Well, to say the least, our car ride to and from Effingham was a disaster. His session with Heather was not good. He couldn't stay put in one spot for more than a few seconds and he was hitting himself in the head repeatedly. On the way home it was very difficult to keep him in his booster. He kept on squirming out of his booster. At one point, I started to hear him scream bloody murder while I was driving home. I looked back and saw his body hanging out of the booster with his head trapped under the seat belt which was very tight around his throat. I slammed on my breaks, barely avoided wrecking, and undone the seat belt as fast as I could. Majority of the time, my car rides with the boys are my most stressful part of the day and if videotaped would by far be the most educational experience for anyone that does not live with autism.

Today we had the same therapies as we did on Wednesday and both boys did phenomenal!!

As you all know, sleep is a huge issue around our house. Since the middle of May, Trenton has been in a good pattern. He has one bad night a week. For the past month, he is having some issues of calming his body down to go to sleep. Normally, he is up pacing the house and fidgeting with toys to get all of his sensory input from the day out of his body. One night this week he didn't close his eyes for bed til 12:03 AM. Normally, it is more like 10:00.
Andrew's sleep has been OK. He always cries for me at least two times in the night and I normally just cuddle him back to sleep. However, the last week has been a little more difficult for Andrew. He has been crying out more like 3-4 times a night for me and last night was every hour and a half. I pray he is not on his way to a really bad pattern. Simply stated....I never know if its a night where I sleep or not. I have a feeling it will always be that way...especially with Trenton.


On our really bad night this week, this is how Trenton originally fell asleep...
 This was around 4 AM.....
 This was around 6 AM...
 Andrew really likes to fall asleep in the swing too. I thought he was so adorable with his arms above his head...
 Just another night of battling sleep but finally was able to go on the couch..

Early one morning....
 Early one morning....

Right before we got out of the van for therapy this morning!

Monday, June 23, 2014

A few statistics

We live in a messed up world to be blunt. If you think about it all this world cares about is materialistic things or what looks good. Seriously just think about it. What do you see on TV? A huge majority of the time it is nice good looking slender people with perfect lives! Very rarely do see any else.

Everything is like this. Even autism.

I have spoke my opinion on how the focus is on high functioning and mild cases of autism. The focus is on how people can overcome their autism. The realistic fact is there are very few cases where this happens. Do your research and you will find this too. However, this is what people want to focus on. Sometimes, its better to look at the realistic facts so you don't set yourself up for another tragedy in life.
Yes, you do therapy after therapy to help improve their lives but very very few are independent individuals. 

Do I expect Trenton to totally recover from his severe autism? I wish that would be the case! I will have hope but the facts prove that is a very slim possibility.
Do I expect Andrew to recover from his  autism? Once again, I hope that is what happens but the facts prove that that is even rare in mild cases.
Here are some statistics for you...

According to a National Autistic Society survey of over 450 children and adults with autism, an astonishing 70% of adults with autism are unable to live independently. Of these individuals, 49% live with family members, creating a huge financial burden on aging parents, and 32% live in residential care facilities, which offer little or no privacy, autonomy, or stimulation.
Only 3% of adults with autism live fully independently. In terms of employment, only 6% of adults hold paid, full-time jobs. Regarding mental health, over half of adults with autism have been diagnosed with depression some time in their adult life while 11% say they have suffered a "nervous breakdown."
And even though the majority of adults surveyed had participated in at least two autism interventions in childhood, 65% continue having difficulty making friends. Of teens surveyed, 74% stated that they had difficulty making friends. Of children under 13 years old, 31% participated in no social activities at all.
Clearly this data shows the burden on quality of life for adults with autism, issues such as independence, self-determination, employment, mental health, social support, and meaningful relationships are virtually ignored when planning treatments, assessing treatment outcomes, or evaluating an overall program’s effectiveness.

Sunday, June 22, 2014

Flash Forward Moment

Nothing can prepare a person for tragedy. Truly nothing can. Some people's tragedy is the sudden death of a loved one or the sudden onset of cancer, etc. My tragedy is clearly having two boys with special needs. Nothing could have prepared me for this. Therefore, all the research I do, people I talk to, autism support groups I attend, and autism functions do help in many ways. In other words, I love to be around people with autism, families raising children with autism, and the therapist that work with children with autism because you learn so much. It helps me to prepare for what the rest of my life and the boys life have in store.

When Trenton was jumping in the bounce house on Saturday, he was joined by a 14 year old boy with autism. The 14 year old was a tall, blond hair and brown eyed boy. He was beautiful! I believe he was in the bounce house with Trenton for a reason. God placed those two boys together for a reason. It was as if I was seeing Trenton in ten years. The boy was oblivious to everything. He was in such a happy place in the bounce house, looking up in the air with the "lost" look in his eyes just like I see in Trenton every day. He had no clue that I was standing 6 inches away admiring what a precious angel he was. He may have known but he lives in a body like Trenton where he was not able to express that he noticed me.
Nana spoke to his mom and this boys mom said that her son was just like Trenton when he was Trenton's age.

I can't stop thinking about that beautiful young man. To be frank, I can't stop thinking about all the other people with autism I saw. They were all so precious. Beautiful!! I really do mean this when I say....They are truly the lucky ones in this world! They may have autism and never be able to live on their own and always have to be taken care of in this life but they are innocent to this cruel world! They will never worry about all the "small" stuff in life. They will never be tempted to the temptations that this cruel world has in it.  They will always be beautiful children of God who have an automatic key for eternal life. I have always said this even before I had my own special needs children. It's one of those things that I recall saying many times in my life.

Mark 10:14

14 But when Jesus saw it, he was much displeased, and said unto them, Suffer the little children to come unto me, and forbid them not: for of such is the kingdom of God.


 Matthew 7:21

 Not every one that saith unto me, Lord, Lord, shall enter into the kingdom of heaven; but he that doeth the will of my Father which is in heaven.

Matthew 7:14
 Because strait is the gate, and narrow is the way, which leadeth unto life, and few there be that find it

I truly believe that the some of the "few" that get to enter are the "little children" or ones who have the mind as "little children".

Saturday, June 21, 2014

Autism Awareness Event

Any time I am notified of an Autism Awareness event that is close to the area I try my best to attend. There was an event in Mattoon today and we had nothing on the agenda so we went! It was completely worth it! The event was at the YMCA.
 The YMCA had three huge bounce houses. Trenton loves bounce houses. The boys were excellent at the YMCA. Trenton tuned everything out and had a great time. Trenton was oblivious to everything around him besides the bounce houses.  Andrew wasn't scared and followed in Trenton's steps the whole time and had fun too!

When both boys are together, it takes at least 3 people to take them off the farm. I am dead serious! Pops took the day off of work to help Nana and I with the boys.
Before the autism event, we stopped at a playground in Effingham. It took all three of us to manage the boys.
They had fun going down the slide. Andrew followed Trenton every time and they both enjoyed it!




 Andrew's pouty face
 Another pouty face

The autism awareness event even had a Blues Clues bounce house. I was very surprised but the boys barely went in this one.

Trenton had so much fun in the bounce houses. He was so happy!

Andrew had fun doing this little game with Pops.
 Actually this is very good for Andrew. It helps work the motor part of his brain where he has deficits in.
 He went 100 mph for one complete hour and then he crashed.....

I met my friend Erica, her husband Brent, and their beautiful daughter, Haley who has autism. I think the below picture speaks a thousand words. The parents are all smiling at the camera but not one child is looking at the camera.




Unfortunately, even though Trenton was good at the event..him and I both are paying the price as I type this. He can't settle his body down at all. He had way too much stimulation and he can't filter it out. This is the reason why we don't do very many events like this or even go away from our "normal" schedule much because there is always a huge price to pay.

Thursday

Our therapy was a little different on Thursday. The boys ST & OT worked together during their therapy session. Therefore, while one boy was in therapy I had the other boy to entertain for 45 minutes. Sitting in the waiting room waiting with one boy is not possible. I can't even fathom what that 45 minute wait would be like with Trenton.
The first boy to go back was Trenton. Trenton did not have a good Thursday. He cried from the time he woke up to the time therapy started. The whole entire 30 minute drive to therapy was very nerve ending. VERY! I could not do anything to please him. The therapist met me at my van to pick up Trenton because if I even tried to take both boys out of the van into therapy and turn around and leave with Andrew......well....it  would have been a nightmare. Andrew would fuss and cry wondering why he wasn't staying for therapy. A parent always has to think ahead with children on the spectrum. Therefore, one of the therapist met me at my van and took Trenton in. He cried the whole time walking into the building. She said he finally settled down and had a good session.

While Trenton was in therapy, Andrew and I went to the local park which is right down the road.


Andrew and I drove back to therapy. I dropped off Andrew and picked up Trenton.

I would have loved to have taken Trenton to the same park but that would have been like a scene from Forrest Gump where Forrest just kept running and running. All Trenton would have wanted to do was run and run and run into danger.  He would have played for a few seconds and than he would just want to run away. The park was right next to a busy road and the public pool. I know my child better than anyone and it would have caused a meltdown because he would have just wanted to run away.....and keep running. Therefore, Trenton and I went  to Burger King to their indoor play area. The scene we caused in Burger King left my face dripping in sweat and I am sure if it was noticeable you could have seen the biggest sweat pits on a woman ever:)
To say the least, Trenton was not happy from the time we pulled out of therapy parking lot. He had five play doh containers that were his comfort items of the day but they only caused more havoc. He had to carry all 5 containers at the same time. Every time he would drop one he shot out a horrible ear piercing scream and it would make him cry even harder thane he was before. The sad thing....I think he dropped his play doh over 30 times that morning and it was pure devastating to him.
Trenton could have cared less about the cool slide in Burger King. Instead he just wanted to sit in the play area and hold his 5 play doh containers and cry. CRY CRY CRY! Every time I would try to redirect him and leave he dropped to the ground in a meltdown. I wish I would have had our time at Burger King taped so everyone could see what it is like trying to take a child with autism to a very small restaurant when he is having a bad day.
At one time, a woman looked at me and shook her head and said, "You have your hands full." The way she said it and the way she looked at Trenton....I could tell she was clueless to autism and probably thought I was just a bad parent.

Sometimes I think my mom is so in tuned into my life with autism she knows when I am having trouble. She texted me all morning up to the time she had to stop texting and take her state boards. She was more worried about me than her test.

Just sitting in the play area looking at his play doh and crying.
 On the way to ABA after ST & OT, he cried so much he put himself to sleep. When he was ready to go to sleep, he took his blanket and placed it over his head and took a nice 30 minute nap

 

His items continue to be his Brainy Baby books. He takes them everywhere. They have went with us to therapy every day for the last month! He loves to line them up and look at them.



Thursday, June 19, 2014

I want

We have been very busy the last few days in therapy...which is a good thing! My days are so busy crazy on Wednesday and Thursday that I am lucky if I make it to therapy with myself put together. Normally, Mommy is up by 5 AM no matter how much sleep I got so I can get myself ready in peace and quiet. Once I am ready then it is usually time for the first boy to be up....then the second....then Mommy running around like crazy getting everything ready for  the day......then Mommy and boys are out the door smiling on the way to therapy.
Trenton and Andrew have done excellent in therapy this week. It was hard to hold back the tears on Wednesday listening to Trenton's speech session. It was awesome!

Jill put together a speech book for Andrew. It is designed to help promote him to use "I want" before he says the object that he wants. Andrew picked up right away on this. All I have to do at home is open up the speech folder and he will point to the picture while saying, " I want ____"

On the left side of the folder the pictures are asking..." Do you want to?"
Andrew is given two choices.
On the right side of the folder, the pictures say "I want to".
Andrew picks out what he wants to do and then he repeats the full sentence.

 Here is a picture of the folder..
 Now, Trenton picked up on this right away during his speech session on Wednesday. I forced my body to hold back the tears when I would hear Trenton say, "I want" before he would choose what he wanted to do. Trenton's voice is so beautiful! God created such a beautiful voice in him. Honestly, if it wasn't for the boys disability, I would have taken the ability to talk for granted. I am a much better person now and I give thanks to God for things I probably never would have if it wasn't for my boys!

During any quiet time lately... which is very rare...I am working on a different picture exchange system for the boys. They understand the one on the iPad but I am experimenting and seeing if they will pick up on this new way better. I actually believe Andrew picks up on this one a lot better than the iPad version. I am not finished and have not implemented it in full yet but here is a sneak peek..

The boys schedules for the day will look like this...
 Andrew does a lot better transitioning when he sees a schedule for the day.

The schedules will be on their bedroom doors. Their bedroom doors will look like this from now on...


A nap today.....it's somewhat of a rare moment to have him nap during the day.


I have lots more on therapy this week but I can't keep my eyes open any longer....to be continued...