Monday, March 31, 2014

Proclamation for Light It Up Blue

Flora Mayor Uncle Bob Tackitt signed a proclamation last Tuesday afternoon declaring the month of April Autism Awareness Month.




April is recognized globally as Autism Awareness month. I am proud to say that this year Clay County will join in a united grass roots movement to bring Autism Awareness,  Education, and Action to South Eastern communities.


One of the big things for the month of April is to change your porch lights to blue lights (you can purchase at Ace Hardware store) and leave the light on in support of the individuals who suffer from autism. World wide buildings in big cities shine blue lights. The pictures are absolutely beautiful! I will post them if I can throughout the month of April.

April 2nd is World Autism Day. Please wear blue for our beautiful people who suffer from autism.

Friday, March 28, 2014

Life Before Special Needs

There are a few things that I have a hard time looking at from my past. One of them is my wedding pictures and the other is pictures of me pregnant with Trenton.
I see so much when I look at these pictures and one of the things I see is happiness. Don't get me wrong, I am still happy but it is a different kind of happiness.
 It's snap shots of life before special needs.

Today on my wedding anniversary I looked back at happy times before autism.






God Bless my boys! I wouldn't change one thing about them! God made them very special!!


Joshua 1:9

Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.

Toes/Sleep/Echolalia.....and More


 Trenton has had a good week in therapies. He read some words again today. Of course, I can't remember all the words he read but I remember one of the words was "toes." He read toes!!!! This was a surprise to me. I know he has seen a picture of toes and seen the word before. However, not as much as he has seen some other words. Trenton has spelled a few words at school lately too! Like I have always said, the lack of sleep does not play a role in his therapy sessions and school time.

One of my favorite things to do is to look at Trenton when he is asleep. As you can tell from my blog, I love taking pictures of him sleeping. The battles that he goes through just to fall asleep is grueling to watch. I know if he could he would tell us how awful it feels. Therefore, when he is asleep he is at peace. He isn't suffering with sensory issues....not battling issues of how to communicate...not in therapies in order to improve his life...not battling all the numerous battles he goes through daily.....he is just simply asleep. Free from his struggles!

This is how he fell asleep the other night around 4:30 AM.

Andrew continues to fight his battles daily too. Andrew and I went to Nana's house for a few minutes today. As we were leaving, I look at Andrew and said, "Tell Nana bye Andrew."
Andrew says, "Tell Nana bye Andrew."
Mommy shakes her head and says, "No. Tell Nana bye Andrew."
Andrew says, "Tell Nana bye Andrew."
Mommy says," No Andrew. Andrew says bye Nana."
Andrew says, "Andrew says bye Nana."

This is just yet another example of Andrew's communication problems. On some days, we feel he is getting worse in this area.

On a good note, Andrew notices kids unlike Trenton. However, he does inappropriate play with the other kids. His cousin, Lincoln, is one of his favorite buddies to play with. They played a lot this week....or should I say it is Andrew following Lincoln around doing EVERYTHING that Lincoln does and I mean EVERYTHING! If Lincoln falls, Andrew falls. If Lincoln gets a diaper change, Andrew thinks he needs a diaper change. If Lincoln coughs, Andrew coughs. If Lincoln scratches his nose, Andrew scratches his nose. I think you get my drift. It is very sad to watch. Andrew is helpless and has no idea what to do around other people so he does everything that everybody else does. This is inappropriate play when it goes to the level that Andrew takes it to.  

Here they are enjoying some cupcakes!
  

Grandma Great enjoyed some cuddle time from the boys!
 
 They looked so cute sitting in their Elmo chairs. Of course, no one cooperated for a picture.



 I think this is the best one...


Thursday, March 27, 2014

Autism Awareness- Article From the Advocate Press

  • "Autism Awareness"

    Clay County Set to 'Light It Up Blue'


  • April is Autism Awareness Month
    April is Autism Awareness Month
  • Posted Mar. 26, 2014 @ 1:37 pm

    April is recognized globally as Autism Awareness month and this year Clay County will join in efforts to bring autism awareness to our local community. In 2010, Autism Speaks, an autism advocacy organization in the United States, started the campaign 'Light It Up Blue: Shine a Light on Autism' to raise international awareness of autism as a growing public health crisis.  The movement has taken off around the world and many historic landmarks such as The Empire State Building in New York City and the Willis Tower in Chicago shine blue lights on April 2, World Autism Awareness Day, to show their support for autism awareness.  
    Since 2010, Jasper Outreach, a mission of Integrated Therapy Services in Newton, IL has lead a local autism awareness campaign.  This year, The Southeastern Illinois Autism Community was established to spread awareness to a larger region including Clark, Clay, Crawford, Cumberland, Effingham, Jasper and Richland counties. Southeastern Illinois Autism Community is a grass roots organization of parents, grandparents, therapists, teachers and community members who are touched by autism spectrum disorders and are dedicated to raising awareness, gathering resources and providing support for people affected by autism in our local communities.   Currently there are over 200 families in Southeastern Illinois who are living with autism each day.  Chances are you know someone who is affected by autism.  
    Throughout the month of April there will be many ways to help support people in our community who are living with autism.  First, local businesses and community members are encourage to 'Light It Up Blue' by placing a blue light bulb in their porch light or by stringing blue Christmas lights in their windows.  Harr's Ace Hardware in Flora has ordered a variety of different blue lights that can be displayed in your home or business and they are donated the proceeds of light sales to our local campaign.  We are excited to see how you will light it up blue in the coming month.
    The public is also encouraged to attend events for autism awareness.  Each county in Southeastern Illinois Autism Community will be sponsoring events through out the month of April that will encourage Autism Awareness, education and action. On April 5th, Clay County will be kicking off Autism Awareness month with a balloon launch at 12 PM on the Flora City Ball Diamonds. This will be a great way to meet families and show support of our campaign.  On April 26th, we will be having a Walk for Autism from 2-5pm at Charley Brown Park in Flora.  Registration has already begun and will include a t-shirt and goodie bag.  This will be a fun event for the whole family to attend and we hope to get people from all over the region to attend our walk.  For more information about local events, you can visit our website at http://seilautism.weebly.com/ and like our page on Facebook page  at www.facebook.com/SEILautism.  If you would like more information about our cause or would like to help sponsor an event, please contact Stacey Rhodes at 618-662-4026.  

  • Wednesday, March 26, 2014

    Sleep update & More

    I'm not sure what is going on with Trenton but we just are not having a good week. We didn't have a good end to our week last week either. I am still here walking and holding my head high because I 100% believe in...... Philippians 4:13  I can do all things through Christ who strengthens me.

    Trenton has had countless sad moments in the past ten days. He has had plenty of meltdowns before bed and during the night. He continues to lay either on the floor or in his bed while shaking his legs and arms before he falls asleep. He cries and is inconsolable until his body gives up the fight. He can only sleep for a few hours until he is up for the next four plus hours. Before he falls back to sleep at dawn, he starts the shaking and crying again. I can't do anything to help him other than to watch in pain, pray, and wonder what he feels like.

    Trenton takes strong medicine to help him fall asleep and to stay asleep. Obviously medicine does not help him. It would be terrible to live in a body where medicine doesn't even help you all the time. The sleep issue is right back to where we were two years ago. I am running on two hours of sleep each night and I am not exaggerating. Like I said before, I am getting through this through my strength from the Lord.

    On the flip side, Trenton continues to say  one or two words a day. It might be a repeat word or it might be spontaneous. In church on Sunday, he tried to act out the story that his Sunday school class was learning. This was a new story and he was really trying to learn it. His teacher said he got confused so he stood between two girls and held their hands.
    He hugged a student the other day at school and he hugged Ms. Jenny the other day before we left!

    I have an untold number of supporters out there and I am so thankful for you all. If it wasn't for your kind words, cards, text, emails, and the gifts that you share with us, my stress level would be much higher than what it already is. I thank each and every one of you from the bottom of my heart. My boys are so lucky to live in such an amazing community!

    Trenton is very lucky to have such amazing teachers and therapist!! Yes, unfortunately we have two children on the spectrum but we are very blessed with support from family, the community, friends, church, teachers, and therapist. My boys are in good hands and so am I!

    Tuesday, March 25, 2014

    Neuropsychologist Appointment

    Andrew had his first appointment with a neuropsychologist on Monday. This is a two, three, or even four trip evaluation. The neuropsychologist does a completely different evaluation than developmental pediatricians. Trenton was evaluated and diagnosed from a developmental pediatrician. Anyway, the doctor only spoke to me and asked me a few questions. His evaluation was primarily on observing Andrew playing with toys on his own will. He also asked Andrew to do a few things for him and completed a special test on him.

    Before I get into what the doctor told me, let's first talk about the spectrum.  In fact let's talk about the old DSM ( Diagnostic and Statistical Manual of Mental Disorders). In May 2013 the DSM  came out and changed the spectrum in many ways. Before the new DSM, the autism spectrum was
    1. Aspergers Syndrome
    2. Pervasive Developmetal Disorder Not Otherwise Specified
    3. Autism
    4. Childhood disintegrative disorder

    The new DSM has
    1.Social Communication Disorder
    2. Autism
    3. Childhood Disintegrative Disorder

    They made two changes. They did away with Aspergers and changed the name from PDDNOS to Social Communication Disorder.

    The neuropsychologist that evaluated Andrew is a very conservative doctor. In fact, he told me three times he diagnoses autism as a last resort. I think this is great! There is way too many doctors who do not do a correct evaluation and are fast to blame autism.

    With all of this said, the doctor told me half way into the exam that Andrew has Social Communication Disorder, formally known as PDDNOS. However, he thinks he may have mild autism. He needs to evaluate him a time or two more until he comes to his conclusion.  The doctor picked up immediately that Andrew's only form of communication is echolalia and learned speech. I tried to give the doctor every good reason as to why I think Andrew has some spontaneous words and the doctor said, "No, Its clear he just has echolalia and learned speech." For example, when Andrew is done with his bath he will say "all done bath". The doctor said that is learned speech. He should be saying "Mommy I want out." or " I am done mom." He doesn't do anything like that. It's always, "all done bath." Andrew says the same thing for almost everything. I can give many more examples but I am tired.

    The doctor also noticed right away that Andrew is not socially developing like he should. He also pointed out his big delay in motor skills, such as Andrew has no clue how to jump and we have been working on this. Andrew has no dominant side. He uses his left hand just like he uses his right hand.
    The doctor said Andrew is a huge mystery because he is in our world and then goes completely out of our world in a matter of seconds. We have been saying this for some time now. Andrew is a huge mystery!

    The doctor did praise Andrew on a few good things! Andrew has great receptive language.  He understands everything we say, he just can't express language back. Andrew has fairly good eye contact if you have him engaged.

    Unfortunately right before we left, the doctor said one line that hit my wrong nerve. This sentence flowed out of his mouth like water. Right before we left the doctor shook his head and said, " Andrew is very eccentric." Really?!?!?!?!? You are going to tell a mom this who already has one child with severe autism and you just told me my other child has either has mild autism or social communication disorder and you are going to end our session with telling me that he is eccentric?!?!?!?!? Well thank you very much doctor!!!!

    We go back in April for another evaluation.


    Sunday, March 23, 2014

    Walk For Autism Form


    Here is your form Clay County!! We hope many of you can come out and support this great cause. Thanks so much to Stacey Rhodes for organizing this event!

    Saturday, March 22, 2014

    Feeling Better but Meltdowns are coming back

    Trenton is feeling better today! However, last evening was another moment where I can say I only survived through the grace of God and his strength. Trenton had a meltdown before he fell asleep. Right before he fell asleep he started shaking his legs non-stop and tried to talk to me. The only thing I could understand between the noises that he was making was "please".

    Please!!! I know in my heart he thought he was telling me something and he  was saying please. He suffers so much every day living in a body that does not allow him to just simply fall asleep when he is so tired. Instead, his body...or brain I should say...puts him through living hell to fall asleep. As Carly explained it when she had these episodes that it felt like her body was on fire with thousands of ants crawling on it. I know Trenton had that episode last night and it makes me physically ill knowing my child suffers every day just living on this Earth.

    I am often asked if I have a Facebook. When I reply, "No I am not on Facebook." I receive a look back like I am a freak of nature. To be straight forward with you, Facebook would only add fuel to my fire. The few times I have looked on my moms Facebook there is someone on there complaining about the littlest things in life. No I don't want to read about how someone burned their supper and their husband got mad at them. I don't want to hear about how you are mad at a coach because your child isn't the starting player. I don't want to read about how normal families get to enjoy weekend getaways, relaxing holiday family times, and how great marriages are in normal families and so forth. I know there are TONS of people who have it worse than me. But when you go on an average of two to three hours of broken sleep each night....when you are constantly trying to figure out what your nonverbal child wants before a tantrum starts....when you constantly try to stop your child from hitting himself in the head....when you are constantly having to advocate for your child because your find out more and more each day how the majority of this world has such little compassion for people with special needs.....when you try to teach someone over and over not to do something they shouldn't be but their brain doesn't allow them to understand or act like they understand.....when you live in the dark constantly because by the time mid afternoon to early evening has arrived he has taken in all of the light that his body can handle for the day.......when you watch your child pace back and forth for three plus hours every night because he can't control his body.....when it is a huge fight 75% of the time just to get him to sit on a toilet.....when you can't remember the last time you watched a TV show because researching for your child's needs is SO MUCH  MORE IMPORTANT THAN TV.....when you watch your child suffer each and every day and you feel so helpless at times because there is nothing you can do other than to watch him suffer you just don't want to be on Facebook!! I especially don't want to be on Facebook after I had a night like last night.

    Instead of those happy moments others enjoy....autism families enjoy the tiniest of things. For example, Nana, Pops, and Mommy took the boys out this afternoon to Pizza Hut and they did well! Trenton did great and it helped tremendously that we had the place to ourselves!!!!!
    On the way home, the boys enjoyed ice cream.

    On another good note, Trenton spelled Nana last night and today!! His smile after he spelled Nana was PRICELESS!!!!!! He knew exactly what he did and he was proud of himself!


     Trenton wanted to wear his headphones today. It's been the first time in a long time he wanted to wear them. Andrew immediately wanted to wear Trenton's other pair. He has to be just like big brother!


    Friday, March 21, 2014

    Flu

    Autism parents are warned that there is a chance you will forever be in the "newborn" stage of your child. What do I mean by this?
    Well, your child could still be 14 years old and he might need Mommy to wipe his butt still. Your child might be 18 years old and still not able to communicate or talk. This leaves you constantly trying to figure out what he wants. Your child might be 20 years old and still does not sleep at night and run wild in your house destroying items because his brain simply can't help it.Therefore you are left living your life with sleepless nights forever.
    Some parents are lucky enough to surpass the newborn stage with their child. Some parents surpass some areas but are left in the newborn stage in other areas. Unfortunately, some are left in the newborn stage in every area for the rest of their life. Autism families have no idea what the future holds for their child. Therefore, they spend every last penny they have and then some in order to hold on to that hope that through the strength of the Lord, your child can surpass the newborn stage.

    We are still in the newborn stage in several areas. One of those areas come full force in time of sickness.  By Thursday evening Trenton was vomiting. He got fairly sick rather quickly. In four hours he vomited six times.

    I remember when Trenton was 5 weeks old and was sick for the first time. I thought how awful it would be to be so young and have no idea why you feel so awful. I remember saying several times, "It's a good thing we don't remember being a baby. I can't imagine being so sick and not able to tell my mom where I feel sick at and not understand why I am sick." Unfortunately, when Trenton is sick, he is like a new born baby.  I can see the confused look in his eye after he throws up. I see the fear when he cries and cries because he is sick and doesn't understand why he is sick. I watch him cry, kick, and scream just like he did at 5 weeks old. If he were neurotypical I could simply tell him that he is sick but will feel better soon.He would be able to understand that.

    I try to take every moment that I can and turn it into a teachable moment. I grab his communication device and I hit the "sick" button numerous times. I try to get him to hit it but he won't. Then I  showed him the body parts and tried to get him to hit what body part hurt. I did the sign language for "hurt" and "sick". Sadly, nothing worked.  I continued to comfort him and listen to his sounds. It was one of those moments when Trenton had sounds crying out of his mouth. He was really trying to talk. REALLY TRYING HARD!!! In his mind, he was telling me.  Sad to say, none of it was words to communicate to me with.

    It really tore at my heartstrings last night. It was one of those moments that I really placed myself in Trenton's shoes. It was one of those moments that I really just thought about what it would be like to be Trenton. I think this all the time but not as deep as I did last night. It had been awhile since I have had the time to think that deep.(Remember.....I'm on survival mode.)

    When he finally went to sleep around midnight, it was my turn to cry and kick. Although my cries were not the same reason as Trenton's. My tears were from the unbearable pain of watching my child suffer. My tears were wishing that I was the one with autism and not Trenton. My tears were because my prayer was so fervent and passionate that night.

    He was much better today than Thursday evening and night. Let's hope the rest of the household does not get it next!

    Thursday, March 20, 2014

    Stuffed Animals & Window

    Mommy had fun throwing all of Trenton's stuffed animals on Andrew the other morning. Andrew thought it was a lot of fun!


    Andrew is in there somewhere....
     As we were walking into therapy today, Trenton realized he could see himself in the window to the building. Adorable!!!

    Wednesday, March 19, 2014

    A Few Updates on Trenton

    Communication Update

    I love working with Trenton on the Proloquo communication device. There are days where he responds better to letters than pictures. The great thing about Proloqouo is  that is has both!

    One of the things that I love to do is type " I love you" to Trenton. Once I type it out, I hit a button, and a voice says what was just typed out. I typed this a few times to him on Monday. He watched me do it and smiled each time. After a few minutes he types "ilve". I have no doubt in my mind he was trying to type, " I love you". Was he just repeating this because I had just typed it out? Was he typing it because he learned that from me and wanted to tell me? I don't know! However, I tell myself it is because he loves me and wanted to tell me!

    I asked him to type cake the other day. He typed "cke". Pretty close!!
    He randomly typed "baby" the other day and he typed it correctly.

    He still continues to try to say a few words a day. The most recent new words he has said were at school. He said "soap" and "walk".
    He continues to label items very well in his therapies.
    The very extremely difficult task is to cross the bridge over into daily functional speech.

    Potty Training

    This has not been going well the past month. For the most part, he fights me, kicks, and cries when I try to make him potty in a toilet. We are months if not years away from being potty trained. I call it a success if I can get him to sit on a toilet for a few seconds once a day.

    Anxiety Issues

    As he gets older, this gets worse. He is learning new ways to deal with his anxiety. Two years ago, he screamed and cried the majority of his day. Now, he will hit himself in the head and his body will act really anxious. This behavior starts full force around mid-day. Why mid-day? He has been at school for two and a half hours and has had at least one therapy session. These are difficult task for Trenton to do. However, he is extremely smart and does a fantastic job at hiding his anxiety until mid-day. This is when his body needs to start releasing some anxiety in order for him to cope with the rest of his day.

    I hope we can get past the stage of hitting himself in the head. I fear this is turning into a self stimulatory behavior. This happens in a lot of cases. Most everyone thinks of children with autism stim by flapping their hands or rocking back and forth. These are only two of hundreds of different ways children with autism stim and release their anxiety.

    Trenton continues to do a lot of vocal stimming. These are his constant noises that come out of his mouth. He likes to visually stim too. Visual stimming can appear that he is just making a funny face at an object. He has done this several times when the people around us have chuckled and asked what he is doing. Well to be frank, it's not funny.  Its a quick few seconds that he releases some anxiety and releases some output from his day up to that point.

    Sleeping

    Can't even begin to describe. Only another mom or dad who sits up with their son can understand this issue. Trenton was in a good phase for a long time. Now..well....the past two weeks he has barely slept. In two weeks, he has only slept decent two nights. He goes to bed around 8:30 PM and is up by 11:30 PM and sometimes he will go back to sleep and sometimes we are up for the day. No joke!

    What does Mommy and Trenton do in the night? Trenton paces up and down the length of our house while shaking his arms and legs. Sometimes he will stop, throw himself down on the floor, scream, and shake his legs and arms some more. He gets up and continues this for the next 4-5 hours. All the while he is vocally stimming NON-STOP! Mommy drinks two pots of coffee in that time. I try to bounce him on his therapy ball to help him release some anxiety so he can sleep. I play some relaxing music to help calm him. I try to play a relaxing video to help calm him. I try with every force in my body to keep my eyes opened. I pray for strength to get through the night. I cry because the pain of watching my child suffer is so unbearable at times. I panic when Andrew is up crying for me. Mommy can't be in two places at the same time taking care of both children in the night. If only the walls in our house could talk. They would have one ugly real life family story to tell.

    Other Random Updates

    He has been mean to Andrew again. He has had low patience with Andrew. He has hit Andrew numerous times in the head and back. 
     
    He has not ate paper lately! Instead, he has started chewing on his shirts around mid-day.


    He still continues to be fairly hyper and full of energy. I believe this is a way of him releasing anxiety from his day too. For example, I was in the kitchen trying to make supper the other day. This is what happens when I try to cook when Trenton is having a day where he needs to release.



    He tears up my curtain rod....
     Tears up my couch and smashes his snack all over my couch
     and the floor. This all happened in a matter of minutes. Therefore, I spent my whole evening when I should have been sleeping....cleaning!



    1 John 5:4 - For whatsoever is born of God overcometh the world: and this is the victory that overcometh the world, [even] our faith.

    Mark 9:23 - Jesus said unto him, If thou canst believe, all things [are] possible to him that believeth.



    Sunday, March 16, 2014

    Meatloaf

    Here is another example of what sleep deprivation does to a person.....

    I made a meatloaf the other day. I was excited to have found the time to cook and have left overs for the next few days. When the meatloaf was done baking, I turned off the oven and left the meatloaf in the oven to stay warm until supper time. Guess what?? I completely forgot about the meatloaf. I remembered the meatloaf two days later.....in the oven still!

    The day after I made the meatloaf I was going crazy. I kept on thinking, "I thought I made something yesterday to eat." I moved everything around in the fridge. "Guess not." I thought.
    I could not remember making the meatloaf.  Then it hit me like a ton of bricks at about 3 AM when I was up with Trenton. Meatloaf!!!! I made meatloaf. I ran to the oven and found my pathetic, dried up, no good meatloaf. Who got to enjoy the meatloaf?????? The cats outside.


    Sleeping is really bad......REALLY BAD AGAIN! I have no idea when, where, or how he will fall asleep.


    Saturday, March 15, 2014

    I see you!

    My friend Andrea emailed me this article and I love it!
    I wanted to share it with all the other special needs moms out there.


    Having a child with a disability can be difficult. There are moments when you wonder if anyone will ever understand or get what it's like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.

    But you are not. Today, I want to tell you that I see you.
    I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful.

    I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous.

    I see you at the therapy office, programming your child's speech device, entering phrases and words to help her communicate with others. You lean over to your spouse with a grin and push a button; I hear the computer's voice say, "I farted." You are funny.

    I see you at the support group. New parents are visiting with their baby, they seem scared, nervous, and they are trying to deal with the diagnosis. You approach them, ask questions, affirm their feelings, and assure them it won't always be easy, but it will be good. You are compassionate.

    I see you walking into the school for the third time this school year. A binder full of notes, lists and goals. Your don't feel your child's team is following the IEP, and you won't give up inclusion for your child. You will do whatever it takes to provide the services that your child needs. You are resilient.

    I see you at the hospital, a place you are too familiar with. Tubes, machines, tests and specialists. Your child's feeding tube is the least of your concerns. You are brave.

    I see you at the restaurant, with a menu in your hand. But the noise is too much for your child, the smells and unfamiliarity overwhelm him. Soon, he is yelling and screaming. While people stare, you exit the place and get into your car as quickly as you can. You are flexible.

    I see you at church asking one of the new moms if you can bring her a meal on Tuesday afternoon. You have so much on your plate, but you also remember how hard the first few weeks are with a newborn baby. You are generous.

    I see you at social gatherings where well-meaning people ask ignorant questions about your child or her disability, make hurtful comments or fail to recognize that your child is a child first. You don't get angry, you don't yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner, and thank them for their concerns. You are gracious.

    I see you out there in the world, living a selfless life. You give so much, you feel so deeply, and you love so abundantly. You are admirable.

    These qualities you display are precious gifts you give to your child and to those around you. They don't go unnoticed... I see you.

    Friday, March 14, 2014

    Eggs!

    Trenton still continues to amaze me! I could tell late in the afternoon on Thursday that he was hungry. I was showing him his eating options on his communication device. He was just not able to look at a picture and tell me. I could tell he was having a hard time processing all of the pictures. So that means I have to go to plan B to figure out what he wants to eat. I pull up the area on his device where he can type to me.
    First, I type "eat". Trenton's eyes connect immediately to the device. Trenton smiles and types back "egg". I was flabbergasted! I jumped up and down and cried happy tears. I was never so happy to make eggs!!!!! Trust me, I make eggs every day (Andrew has to have eggs every morning). However, this was the happiest I have ever been making eggs!

    Dazed & Confused

    You know you are a sleep deprived special needs mom when you have completely lost your mind. This past Wednesday, I have never felt so out of touch with myself.

    I left a few minutes earlier than normal to pick Trenton up at school. I remember getting in my car and I remember certain parts of my drive into town. I do not remember parking, getting out of my car, nor walking up to Dollar General. However, I found myself walking through the doors of Dollar General. The second I put one foot in the store I had a "lost" feeling come over me.
    "What am I doing here?", I thought to myself.
    "Did I just drive here? Yep, there is my car outside. What did I come here for?" I am saying over and over to myself. I still stand in the doorway like a lost puppy looking for her owner.
    I start walking the store. I walk up and down every aisle looking for some clue as to why I came to Dollar General. I spot a mom and daughter shopping together and I have my eyes glued on their cart for a clue as to what I might need. Nothing. Nothing rings a bell as to what I came into the store for. I look at my watch, it had been 7 minutes since I stepped into the store and I still had the most confused feeling that I have ever felt.
    What did I do?? I grabbed some of Trenton and Andrew's favorite snacks, paid for them, and left.

    Oh sure, I have walked into stores before and it took me a few seconds to remember what I needed but nothing like this! I was a sleep deprived special needs mom walking around Dollar General dazed and confused.

    This is what happens when you are raising a child with autism who does not sleep. Who knows....I might be raising two children with autism who do not sleep. One way or the other, Trenton's horrible sleep pattern is back and Andrew's horrific sleep pattern continues. If the walls of my house could talk....wow...they would have some stories to tell.....stories that most people could not even fathom.

    Wednesday, March 12, 2014

    Music Therapy

    Trenton had his first music therapy session on Tuesday and it went great! I am so excited to start this with him. He will start receiving it weekly from Stacey. I have wanted to do music therapy with him for a long time but finding someone in the area was very difficult. However, Stacey was an answered prayer. She is back in the area and it is what she does for a living!!!! YAY!!!!!!





    Individuals of all ages and all abilities can benefit from music therapy. Previously, music therapy has been used to support emotional, cognitive and social development in many populations. Music therapy may help to promote wellness by managing stress, enhancing memory, and improving communication.
    A 2004 study from the Journal of Music Therapy found that music in interventions used with children and teens with ASD can improve social behaviors, increase focus and attention, increase communication attempts (vocalizations, verbalizations, gestures, and vocabulary), reduce anxiety, and improve body awareness and coordination.

    Many additional studies have found that children and adults with autism spectrum disorders (ASD) respond well to music. Often, individuals with autism respond positively to music when little else is able to get their attention, which makes music a potential therapeutic tool.


    In a 2012 study of 41 children with autism over a ten-month period,  found that weekly music therapy sessions seemed to improve overall behavior, with the most improvement seen in inattentive behaviors. Children in this study experienced hour-long sessions of music therapy once a week, and their conduct was monitored against a checklist of target behavior like restlessness, aggression and noisiness. More than half the group improved by one or two points on the scale after the music therapy sessions.

    Music can improve communication.


    Up to thirty-percent of children with autism are nonverbal, and many low-functioning children have difficulty following verbal commands, and have difficult time with social awareness like understanding body language.

    Wan et. al. (2004) found music to improve the mapping of sounds to actions, by connecting the auditory and motor sections of the brain, which may help improve understanding of verbal commands. By pairing music with actions, and with repetitive training, the brain pathways needed to speak can be reinforced and improved.

    Tuesday, March 11, 2014

    My Supermans

    I put Andrew's arm around Trenton. Trenton looked at the camera but Andrew would not.....

     They love their blankets.

    Neurotypical Moment!!

    After a miserable night on Sunday night I really needed something to lift my spirits! Guess who lifted them for me????? Trenton!
    I had an amazing experience when I picked him up from school on Monday. Ms. Jenny walked him to me like she always does. The second Trenton saw me he dropped her hand, put a huge smile on his face, and ran to me!!!!!!!!!!!!!! He ran right up to me and hugged me!!!!!!!!!!!!!! It was one of the closest to normal moments I have ever seen from him. He ran to me like a neurotypical child would run to their mom. It was priceless and no words can express how amazing that feeling and moment was for me. He connected with me on every level. The smile! The eye contact! The hug! WOW!!!!!! It has been on my mind non stop since it happened!
    Thank you Trenton!!! The good Lord knew I needed that!!!!!!!!!

    Monday, March 10, 2014

    I don't know the story behind this art project but it was in Trenton's book bag last week and I love it!


    Sleep

    On some days I feel like I live in such a lonely world. A world where only a few select people know what it is like to live this life. A life where you are a mom to autism. Although this life has truly taught me a lot about mankind, its an exhausting life. You find out who truly cares and who truly wants to help. Unfortunately, you find out who is only there for you when times are good. The "times are good" people also show a lack of compassion, lack of empathy, and only think of themselves. They are the people we only hear from at certain times of the year. These people act as if we are a normal family. We are far from normal! I was told after Trenton's diagnosis that I will find out who my true family and friends are. Unfortunately, I have heard this same sentence from other people who have had other tragedies such as the death of their child, close friend, and other tragic events who have changed some peoples life.

    It is 4:30 AM and I have only been able to sleep for two and a half hours tonight. I have watched Trenton going completely nuts for over 13 hours straight now. He is having a hard time filtering out the world around him. For instance, I went to my aunts today and only stayed one hour. Ever since we came home, he has only stopped moving his body, has only stopped making high pitch shrills for three hours when he was sleeping. He has ran and paced up and down my house. He has climbed on top of our kitchen table, computer stand, and counter tops. There is no stopping him. All the while he is constantly shaking his arms and legs as if he has the "ant feeling" (the ant feeling was described from a girl with autism. She says her body feels like it is on fire with a thousand ants crawling all over it).

    Needless to say, I am tired and at my wits end. Trenton has had three nights of very poor sleeping in the last 7 days. Are we heading toward a bad streak of not sleeping? If Trenton is sleeping, Andrew is up in the night. On Saturday I watched Andrew have an episode that was remarkably close to a Trenton night time episode.  I feel like every day I am watching my youngest son slip farther away from what is considered neuro typical every day. How would you feel? The feeling can not be put into words on how it feels to have lost one son to autism already and possibly your other son too.

    A few people have completely changed their life for my family and two of those people are my parents. Yes they live right next door but they would have done the same if we lived 8 hours away. My mom is the person I can talk to about my life and she completely understands. She has been up in the night with Trenton, she knows what it is like to take care of him on a daily basis, she has put herself in my shoes and has walked the walk thousands of times and I have never heard them complain about helping us. When I was talking to her the other day about my life and how I am sleep deprived she said, " You will never be able to put your head on your pillow again and count on sleep." She is right. That part of my life is over. It is amazing how our bodies depend on sleep in order to survive. If I was able to get even 5 hours of sleep each night, I would feel like I was on top of my game! One needs sleep in order to take care of autism every second of your life.

    To all of you who are living this life too....you are not alone! I read your blogs, I read your emails and you are in the same situation I am. Just remember....you are not alone!

    Saturday, March 8, 2014

    Update!

    Thursday and Friday were great in therapy!! Trenton participated well! He labeled lots of objects. He read a few words and I am so mad because I can not remember the words he read today. Also, he typed his name and typed "run" today for Jill. I have to laugh at this. Run!!??? I would bet a thousand bucks, which I don't have, that he wanted to go run!! How does he know how to type run?? I wonder if he knows what it means or recalls seeing those three letters together before. A mystery I will never find out!

    At school Trenton continues to thrive as well. The other day, even before the teachers  had  talked about who was absent, Trenton said, "name of student" "sick". This does not surprise. He notices everything!! Good Job Trenton!!

    He has had two bad nights of sleeping out of the last five. Yikes!
    Oh, by the way, his arm is perfectly fine. I think it was more of a mental thing on Wednesday with his arm

    A few nights ago he fell asleep with his blankets on his head while holding his sippy.



    Andrew still continues to be Andrew!
    He can label items but as far as functional speech he is no where close to where he needs to be. He still repeats everything you say. Sometimes he gets frustrated and flaps his hands when he wants something and can't say it. He knows how to have some big tantrums with dilated pupils every time. He is still not sleeping well. Definitely appears to be in his own world a lot of the time. His eye contact is no where close to what it should be. He still does not greet Mommy and Daddy like the majority of toddlers do.  With all that said, Andrew still has some major issues.



    Wednesday, March 5, 2014

    Crocodile Tears

    It was a day full of huge crocodile tears. When I picked Trenton up at school I heard his cute little giggle coming down the hallway. It was so nice to walk into his school and hear that! When he saw me he came up to me and hugged my legs. A few seconds later he kissed me on my lips a few times! Immediately after all that, he got very sad and was sad the rest of the day.

    When Trenton is sad and cries crocodile tears, it makes him tired. Therefore, he slept a good majority of the way to Effingham.
     
    When I opened the door to get him out of the car for therapy, I noticed he was crying and holding his wrist. From this point on, he cried off and on for the rest of the day while holding his arm and wrist in an awkward way. I have no idea what he did to himself. Honestly, I have no idea if he really did hurt himself or if something out of the ordinary happened to his arm which led him to cry and refuse to use it. ( For example, if he has a band aid on his finger or hand, he will not use that arm. He still will not use that arm even after the band aid has been removed for a while.) Toward the end of the day, I finally got him to hit the "arm" button on his iPad. This told me his arm did hurt.

    We drove all the way to Effingham for Trenton to cry those tears for Heather and refuse to work. He just laid his head on her table while holding up his arm crying. Therefore, she brought him back out to me in the waiting room and we headed home. With all this said, since he was sad and calm, I decided to be brave and try a restaurant with him. I took him into McDonald's and he was very good.  Unfortunately, he was sad so he was not climbing up on top of everything and running wild. I would say I had an extremely close to normal experience in McDonald's today. Trenton just sat at our table looking extremely sad....
     I hate the fact that it makes me feel like a normal mom when Trenton is sad. Right before we left McDonald's, Trenton climbed on top of my lap, buried his head in my chest, and let me hold him for a good five minutes. He would occasionally raise his head up and kiss me on my lips. I embraced that moment. I had no idea who was looking at us, but I didn't care!

    Upon arriving at home, he was still sad. All he wanted to do was sit in my lap where he fell asleep again.
    This was Trenton's first day where the majority of his day was consumed in a "sad stage". On a good note, I can't tell you how many times he kissed me on my lips. I think that was his way of thanking me for being there for him. Plus,I hear him say "mom" today when he walked in on me in the bathroom.

    Tuesday, March 4, 2014

    Wendy's Thoughts!

    I have met some amazing new friends since my journey of autism has started. One of those moms shared her thoughts with me the other day and I wanted to share them with you! 
    Thanks for sharing Wendy!


     
    Nothing can prepare you for the challenges that will come with parenthood. There are late night feedings and early morning awakenings. It is no longer about what is best for you but what is best for the little person whom depends on you for everything. You spend countless hours dreaming of all the things your little could become, all the accomplishments you hope them to achieve. If you are lucky things keep progressing normally and before you know it you are watching graduations and weddings and having grandchildren. But for 1 in 88 of parents there is a different kind of journey. Autism will take you on an emotional roller coaster in which you have to put all your dreams aside for your child. Your new dream is fighting in every way possible to give your child a shot at independence. You want to know that when you die your child will be able to survive. So you enroll your child in every therapy that you can afford. If you can't afford therapy then you sell your house or you fundraise. You may even find yourself restricting your child's diet and filling them full of supplements hoping and praying that SOMETHING will restore the connections in their brain. You just want your child to be able to have a conversation with you. You want more than 2 seconds of eye contact. And you want to protect your child from the stares and bullying of those who just do not understand. You mourn and cry for all the things you know your child can never be. There is a new appreciation for every milestone achieved. No word is ever taken for granted, talking too much simply is not possible. When your child is finally potty trained it is a joyous occasion. You look at your child with much respect. You know all the inner obstacles he is facing. You know the battle he is having with the lights shining in his eyes, the scratchiness he is feeling with his collared shirt, the fact that he doesn't understand exactly what is going on around him and what people are saying. Yet he gets up everyday, possibly a little grumpy, and faces the world head on. He sits through 17 hours of therapy each week and works hard. He works hard to accomplish things most parents take for granted. Although he will never fulfill all the dreams I had for him as a baby, my son is a fighter and I am so proud of him. He accomplishes great things on a daily basis and I know he is capable of so much more.

    Autism Walk in Flora!

    April 26th will be the first annual Autism Walk in Flora. More details will follow at a later date. I know we are trying to make this event more of a time for families to come together, unite, cry on each other shoulders type event. We will of course take a walk around the park to honor our children who lives have been forever changed from autism. I hope and pray our community will come out and support us.

    I want to encourage all families who are raising a child with special needs to attend. I think it would be great for all families who are raising special needs children to come and feel the support as well!

    Doctor

    We made it to Trenton's doctor appointment in Saint Louis yesterday. I was afraid we were not going to make it due to the ice storm. Thankfully, the storm was not as bad as predicted. Anyway, this appointment was with Dr. Twyman, Trenton's developmental pediatrician. The focus of this visit was Trenton's ADHD, anxiety, and sensory processing problems. She believes that Trenton's sensory processing problems play a major role in his ADHD and anxiety. I could not agree more!
    She kept Trenton on the same medications. However, she adjusted the dosage just a little.
    Trenton was great with the doctor. Our last doctor experience was a nightmare and that was only one month ago. This visit he was able to handle the atmosphere and his surroundings very well. I was very proud of him. Andrew and Nana went along for the ride and Andrew was great too!

    Trenton loved the racing room we were in!


    Sunday, March 2, 2014

    Conversations from my Past

    Have you ever had anything happen to you in your life that makes you recall and think about maybe certain situations that have happened in your past? There have been a few situations  and conversations that come back and haunt me almost weekly. So what got my mind thinking about all of this?
    It was actually something that came out in the news a few days ago. Research has proven that a couple is 3 times more likely to have a child with autism when the father is 40 years plus. Does this surprise me? No. I recall one of the first things I learned in college while getting my special education degree was that the father plays an equal role, if not more important role, in the child that you are conceiving. Most everyone thinks it is the mother.  With that said, I did a lot of thinking about past conversations in my life.

    For example, when Tim and I had a conversation about when we were going to have children, he wanted to wait a few years. I wanted to have children right away. I gave Tim many reasons why we should go ahead and start our family. One of the reasons was the age issue with conceiving. I told him the younger we are the better our chances were to not have a child with a disability. I gave him many other reasons. As it turned out, I wonder what would have happened if we waited til we were 40 to have children? Would Trenton be even more severe than he is now? Would Andrew be severe too?
    Then I think about my first pregnancy that ended in a miscarriage. I look at that miscarriage as almost a blessing. Baby Freedom, as we call her, is in a much better place. I wonder if that baby would have been born with something even more severe than autism. Or would Baby Freedom have had autism and another disorder too?

    Another conversation I recalled happened when I was telling a group of people that I was going into special education. One person's exact words to me was..."Why do you want to work with those people?" I was livid! My exact thoughts were, "How could you say this? You could have a relative with a disability one day?
    That could be your child, your grandchild, your best friend?"

    Another conversation I remember so clearly was in college. A few of my classmates and I were talking about  all the disabilities we were learning about. I remember saying this exact sentence.."That would be awful to have a child with a disability. That parent has to die knowing they are leaving a disabled person on this Earth. I just can't imagine."

    I remember the day I had to visit a school for children with severe and profound autism while I was getting my degree. I will never forget that day. It was all I could do to not vomit the whole time I was there. I kept on thinking about how awful it was for those children to not have a normal life. I kept thinking about their parents and their siblings. I was very distraught for several days. In fact I recall telling someone how every spoiled, bratty, just thinks of themselves teenager and adult needs to visit that place. It needed to be a requirement for every high school senior. I would guarantee it would make a few people appreciate their life more.

    Another conversation I remember so clearly happened while in high school. A friend of mine had an aunt who had children with disabilities. We were talking about them and the whole time that night when I was laying in bed trying to go to sleep, I kept thinking about how awful it would be to have a child with a disability.

    I thought back on the days when I was single and dreaming about my future husband and future children. I always dreamed of a picture perfect life but something always told me, my life was never going to be like that.

    My mom and I had this conversation a few days ago and she recalls a conversation that haunts her too. Its almost as if God had prepared us for what lied ahead. Almost as if we knew what our future had in store for us.

    All in all, I love my boys and wouldn't trade them for the world!!!!!!!!!!!!!!!!! I am so glad God gave them to me! I am a much better person because of them.



    Psalm 127:3
      Lo, children are an heritage of the LORD: and the fruit of the womb is his reward

    Psalm 115:12-14
     The LORD hath been mindful of us: he will bless us; he will bless the house of Israel; he will bless the house of Aaron.
    13He will bless them that fear the LORD, both small and great.
    14The LORD shall increase you more and more, you and your children

    Good Week!

    Trenton's week has been fantastic overall. It has been one of the most affectionate weeks he has ever had I believe. On Friday when Trenton saw Emily, his OT, he greeted her with a kiss! It was so sweet to watch!  He still continues to kiss me on my lips and I love it!!!! It is awesome!!
    He did fantastic in his therapies on Friday. He even read for Jill. I can't remember all the words he read but I do remember he read "baby" and "book."
    He  had a few sad moments this week. One was at school and a few in his therapy sessions. I believe when he has these moments, he wants something and doesn't know how to communicate it. At the time it happens, he is having a "clear" moment. At school, he was sad because he said "pizza" for breakfast. After he got his pizza, he wanted cereal and couldn't have cereal because he already had pizza. At the time, pizza was probably easier to say.

    The boys spend a lot of time side by side these days. I love it! However, when Trenton is done and doesn't want Andrew around anymore, then Andrew better move quick before he gets hurt.

     Mommy had a friend that took her away from my house of autism yesterday and I had the best time!!! She even gave me a few things for the boys and one item was this car decor for Andrew's room and he loved it!!!!
     This always brings a smile to my face.....
     That is something you can find in the movie, Cars.

    I also love how Andrew lines them up and smiles at them.


    This is how he gave up his fight for bed last night.


    Before Trenton gave up his fight for bed, we had a pleasant surprise at our front door. Trenton's Sunday school teacher and some kids from church brought us over some food! It was awesome and a big help! I had been up til 3:00 AM on Friday night with Andrew and did not cook on Saturday simply because I was too tired. Therefore, the food was a huge help! Thanks so much!!!