First bike ride of the season! What a beautiful day we had!!!
I love watching him ride his bike. Oh how I wish T-man could pedal. That is one area that I don't speak enough of when it comes to the boys. Trenton isn't able to pedal and the likelihood that Trenton ever will be able to pedal is very slim.
A service dog is a type of dog that is trained to help an individual and it's family. According to National Service Dogs (2011), the mission of these animals is to increase the safety of the person with autism. For example, such a dog may lower the likelihood of the person bolting or crossing a busy street, because it is physically connected to the person with autism (Autism Service Dogs, 2011). The dogs are trained to follow commands from parents, stop at doorways, and resist the child moving away by using its weight to slow or stop the child (e.g., Burrows, Adams, & Millman, 2008a; Burrows, Adams, & Spiers, 2008b).
I have researched and put a lot of time into studying this area and how it could help Trenton over the past three years. Now, as a single mother, it has become almost a necessity to do what we can to get Trenton a service dog and let me tell you why....
1. Trenton is an eloper and has a tendency to wander off just like many kids on the spectrum. I believe the percentage is roughly around 65% that wander. This affects our lives when I try to take him out in public and even in our own backyard. I can't trust that Trenton won't climb over our fence and take off . I am unable to step into my house and start supper without fear that he will escape the second I take my eyes off of him.
When I try to take Trenton out in public, I have to have my hands on him at all times. Therefore, this makes it impossible to try to get groceries and pay while keeping my hands on him so he doesn't wander off.
The dog would be connected to Trenton while out in public. The dog would be physically connected with ropes or other forms of tethers. AMAZING!!!! The dog would be trained to stop Trenton from wanting to wander away from me in the store. The dog would be trained to keep Trenton right by my side!!!
2. Trenton doesn't know danger which makes the wandering and eloping issue even more scarier. He would run across a busy street or run into a pond or lake without knowing what could happen to him, etc. The dog would be trained to tackle Trenton to the ground and hold him down to the ground until I reached them. WOW!! How amazing is that!
3. I have to sleep with Trenton because he wakes often in the night. As most autism parents are, I am afraid that he will escape the house in the middle of the night when he wakes up. He doesn't know the difference in 2 AM and 2 PM. I fight many tantrums because he wants to go outside at 2 AM. What would happen if he wakes up and I don't hear him from my bedroom and he escapes? I would never be able to live with myself! Therefore, I sleep with him. He has a lot of anxiety and needs someone right there with him. Therefore, a dog would be trained to alert me when he wakes up in the night. The dog would be trained to sleep with him and comfort him in the night.
My guard is up 24/7 and I can't let it down. I do have special locks on my door to prevent Trenton from escaping but he is getting older now and taller. It won't be long until he will be able to reach them.
Autism service dogs also have been known to alert parents of potentially dangerous situations at night (e.g., child waking up unhappy or getting out of bed and walking around). This can result in not only the person with autism remaining safe from harm, but also parents and other family members being calmer, happier, and more relaxed knowing that the safety issue is less of a concern. One difference between autism service dogs and other service dogs is that typically, service dogs are trained to bond primarily with the person whom the dog will be helping. However, autism service dogs are trained to primarily bond with and take instructions from the parent(s), but trained to work with the person with autism (Burrows, et al., 2008a).
Nevertheless, most of the outcome studies support the notion that these dogs do provide increased physical safety and security. For example, Burrows and Adams (2005) and Burrows, Adams, and Millman (2008) reported that parents consistently claimed that the dogs prevented children from bolting and running away. Parents relaxed more during bedtime knowing that the dog would alert them should the child with autism leave the bed or exhibit some other potentially dangerous behavior. Because of the dog’s ability to physically prevent the child with autism from behaving in a dangerous way, parents felt more in control and calmer. Most of the dogs accepted the jackets in which they were placed and followed commands well. Parents reported immediate satisfaction and reduction in concerns about safety issues.
With all of that said, I am starting the process of getting Trenton a service. It is a very lengthy process and takes two years to get your dog. If it wasn't for Alicia Westjohn, a special person from my hometown, then this would be just a dream still. However, she is helping me make this come true!
This is a life changing decision for us. This has the potential to be a real game changer in our lives! I have never been so excited about something in my life until now!
For now, I will pray and let God guide me on this journey. For the next two years I will pray for our "family" member that will be going through training to help my little T-man and my family!
So much more on this but just keep checking in and you will see post from time to time over the next two years until we get our new family member!!
Hebrews 11:1 Now faith is confidence in what we hope for and assurance about what we do not see
It is amazing how BEAUTIFUL life is when you have faith that God will take care of you!
I took a leap of faith two years ago and moved to Terre Haute. I moved away from all of my family and friends. I moved to a town where I knew no one other than my two boys with autism and my husband at the time. I put my faith in the Lord that it would all work out!
Was I scared? YES!!! But, I knew God was in control and that he would take care of us.
I let God take me on this journey in life and he is most definitely taking me on an amazing one! I can't put in words what it feels like when you simply trust God and let him lead you where you need to be.
The opportunities that have opened for the boys and I since we moved have been nothing but blessing after blessing. God is good and he does take care of us. We have to open our eyes and see what he is doing in our lives and when we do, it is nothing but beautiful. It isn't always easy but there is always something to be thankful for...always something to learn from...always a brighter side to focus on!
When you put all of your faith in him, he will open doors that you never knew could open. When that happens, I encourage you to walk in those doors and see what the opportunity is all about. God will never let you down! God is good!
Psalm 119:30 I have chosen the way of faithfulness; I have set my heart on your laws.
Trampolines are a huge part of our lives. Needless to say that is why I have one in my house.
People with autism spectrum disorders often suffer from anxiety and built-up stress. Some people with autism will often jump up and down to meet their sensory needs or to relieve themselves from the tension and anxiety. They will do it in a room, on your furniture...you name it.....they will jump on it. Children and grown-ups with autism have to deal with sensory imbalances and in order to control that feeling, some individuals will seek relief in repetitive movements, like rocking, swinging and fidgeting. Jumping on a trampoline is an excellent way to simulate these soothing moves and works as an anti-stress method at the same time.
Trenton uses the trampoline for all of the above reasons. It is a necessity when it comes to his needs.
Below is a short clip of the boys jumping on their trampoline in their sensory room today after therapy.
The other day I sliced my thumb cutting some fruit. It has been awhile since I cut myself like that so yes I made some noises because it hurt! Well, Andrew picked up on the noises and ran into the kitchen. He saw that I was bleeding and he immediately went into action.
"Moochies where are the Band-Aids? I am going to take care of you because you take care of me."
Since the day Trenton has entered this world, he has been difficult to take places. I never knew why when he was a baby but obviously after he was diagnosed with autism, I knew exactly why he screamed the second I would step foot in a store or why he would run away and throw himself down on the ground in a full blown meltdown.
Even though going places was always difficult, I never gave up on a few places and one of those places was church. Many autism parents give up on going to church because it is difficult but I knew if I wanted to make it possible, I had to stick with it. I had to go through the unthinkable with him. I had to do it!
I most definitely went through some very hard times at church. I spent many times at church in the nursery with him in a meltdown. I spent many Sundays in drenched clothes because I had sweat through my clothes from embarrassment because WW111 was going on in our pew. Most of the time when we were in the auditorium no one could hear anything other than the cries and noises from my children, especially Trenton.
He has ran up and down the aisle. He has tried to lead singing and has tried to even preach:) Every time he would run up to the front of the church, I just kindly ran after him, grabbed his hand and gave the church a nice nod and smile and walked back to our pew dying on the inside. After we would reach our pew, the battles would start again, immediately.
He has thrown things across pews...even big things such as play doh and hitting a lady in the head with it. But, I didn't quit, not even after that:)
Ninety-nine percent of my Sundays I left after 45 minutes and Andrew stayed behind with my parents. During most of that 45 minutes we were only in our pew about five minutes. Like I mentioned above he was all over the place, running to and from Sunday School classes....you name it....we went through it.
It was hard. It was embarrassing. It was hard work but I didn't give myself a choice. I knew I had to do it if I ever wanted to be able to go to church and that is the most important thing to me. Therefore, I stuck with it...Sunday after Sunday the same battles.
I remember when my mother suggested that I move to Terre Haute in order to get the boys help. One of the first things out of my mouth was, " I will never be able to go to church." When we lived in Illinois I had my parents to help me because we lived by them and went to the same church. I had no one to go with me and help me if I moved to Terre Haute. My husband at the time didn't go so I would have no one. However, after the choice was made to move, what did I do? I still continued to battle the battle of going to church. Talk about being nervous!!! Going to a whole new church with a child with severe autism who doesn't quit moving!!!! Wow! I made my parents come visit me every Sunday for while to help me:)
I won't get into every detail but here I am 6 1/2 years into our autism journey. Six and a half years of going through what most parents end up giving up on because it is merely impossible. Well, now for the last several months going to church is the best experience ever!!!! Needless to say I have an amazing church who goes above and beyond to help me. Trenton goes to class with an amazing lady who happens to be a speech pathologist and knows and understands autism! They have a special needs class now!!
I am so blessed! God can lead us to amazing people if we let him. I took the leap of faith and moved to Terre Haute and I put my faith in God that it would work out somehow to go to church with the boys and it sure did!!
I walk in every Sunday with the boys and we sit in our pew together for a good thirty minutes before Trenton goes and spends the rest of the time in the special needs class.
If someone would have told me two years ago that in 2017 Trenton will be able to tolerate a good thirty minutes during the start of worship, I would not have believed them! BUT HE DOES!!! He does because I didn't give up. I fought through the hard times. I fought through the embarrassing times to make this possible. We stuck with it and didn't give up. I believed and wanted it to happen and it is coming true! Now don't get me wrong, we still have our moments during that half hour that he is in church. He isn't quiet as a mouse. He makes his noises and I am sure everyone can hear him throughout the big auditorium but it simply goes with his autism. He verbal stimms a lot and everyone is so understanding! I constantly have to give him edible reinforcers during that time but we do it!
So, if you are new to your journey and go to church the only thing I can say is to not give up!!! Don't give up! Fight through it. Do whatever you need to do to survive at least a few minutes every Sunday and your length of time will eventually increase! It just takes time! I am only at a half hour and I have been doing it for 6 1/2 years!
Jesus looked at them and said, “With man this is impossible, but with God all things are possible
I snuck this picture last Sunday right before church started!
My tips for you if you want to make church happen for you and your child with autism.
1. Be consistent and do it every Sunday that you can
2. Sit in the same pew
3. Have a plan in place before you enter the door and follow that plan (routine) every Sunday
4. Start small and work your way up with how long you stay if you have to (Every child is different and can tolerate things differently.)
5. Go prepared with snacks, toys, headphones, and whatever else your child might need.
6. Educate the church.
When I taught special education, I loved to use file folder games for all special needs from mild to severe. File folder games are a great way to teach your child needed skills. One of the great benefits to file folder games is that they are easy to create and they don’t take up a lot of space. Many file folder game ideas can be found online or purchased for a small fee.
I am going to make Trenton a lot of these once I can get to a big laminating machine. However, below is a small example of one. You paste the activity in side the file folder and then laminate it. All you do is open the file folder and start the activity. It's a great way to not lose any papers:)
This is an activity where Trenton finishes the sequence. It's a great way to try and get some mands out of him!
This activity should be a file folder too but I just don't have a big enough laminator machine. Anyway, he is matching the big letters with the little letters:)
In the one below, I have pictures of the same thing and he picks the one that is big and the one that is small. Again, another great way to get mands from him.
The final one I have made......he picks the color of the object...again..a great way to get mands out of him. In this particular activity, I have several pictures that come in several different colors. Trenton loves colors so it is a highly motivating activity for him which leads to him trying to use words!!!
While at Harsha Autism Center last week, Trenton spelled "Andrew" spontaneously!! This made me so happy when the coaches told me. It melted my heart! We have been spelling a lot lately. Trenton spells words because he has a photographic memory. The only time he has spelled to communicate was "crummy". I can't help but wonder if he spelled because we have been spelling family members names lately or did he spell because he wanted his brother!! I will never know but it just made my heart swell with joy when I heard the story.
Since Trenton was three years old, I have worked diligently with him to get him used to restaurants. I have worked hard on McDonald's because their chicken nuggets is one of the few things he will eat. The other place I work with him at is Monicals Pizza. Trenton loves pizza and that was a good sit down restaurant that never seems busy in mid-afternoon.
When I lived by my family in Illinois we took the boys to Monical's at least once a month. In the beginning, Trenton and I didn't last very long in the restaurant. There were many times him and I ended up sitting in the van while my parents stayed in the restaurant with Andrew. We have caused many scenes in restaurants with meltdowns and maladaptive behaviors but I just kept doing it. Thankfully, when I moved to Indiana they had a Monical's, too! So I was able to keep that routine with him and that is where we always go when my parents visit.
I have never tried a restaurant by myself with both boys until last week. The only places we go by ourselves is therapy, doctor appointments, dental appointments, and church. Something came over me and I felt like it was time to try Monicals by myself. Guess what?!?!?!?!? We made it out alive!!!
It was the best feeling in the world! The boys did great! We did our routine that we have when we go to therapy, church, and doctor appointments. I couldn't have been happier! It went so well that we did it again this week. What made it even better was the fact that no one was in the restaurant besides us both times. That has always been a trick of mine....we have to do it at a non-busy time!
I just love how Trenton goes out in the community with his coaches at Harsha Autism Center because it has made a huge impact on him! I just love going with him on those community trainings.
If you are new on your autism journey, I would highly suggest to pick one or two places and become a regular there and eventually you can work your way to other places!
I think we just may add this to our weekly schedule now:) I know it may not sound like much to some parents but this is a really big deal for us!!!!!!
This is how you can find the boys and I when we are out. I try to make Andrew hold Trenton's hand. However, it is not unusual for Andrew to be holding my other hand.
I love to read the Bible. Whenever I get a chance to read it, I do. It is such a powerful book with story after story of how we are instructed to live our lives. There is so much hope, strength, and courage I simply find it so inspirational. If we look at the story of Joseph, it is an amazing story of hope and courage.
As a prisoner and slave, he could have seen his situation in life as hopeless. Instead, he did his best with each task given to him. Most importantly, during these days of trials and challenges, he continued to serve the Lord.
The story of Joseph was recorded for many reasons. One reason was to simply tell us that life will be hard but you have to maintain the same loving attitude that the Lord wants and to continue to serve him. You can't find anywhere in this story or many other stories in the Bible where we are promised a life of no pain and no sorrow, that is our eternal life:)
This life is suppose to have pain, trials, and heartache. It teaches us amazing things, trust me! No matter what you are going through, no matter how undesirable your life is, consider it part of your training for the Lord. God knows what you are going through. God knows the trials I go through daily raising two boys with special needs by myself. God knows the suffering and trials Trenton goes through. God knows each and every person who is mocked and made fun of by others. God knows the people suffering from cancer and other terminal illnesses. God knows and He cares!
My life didn't go as planned. Joseph's life didn't go how we wanted. But, I can learn from Joseph's life. I read about his trials and I learn from his wonderful example on how I should handle my trials and challenges.
Whatever you face today, don't give up! Embrace those challenges like Joseph and God will reward you!
It's 2:45 AM. I am woke up to the heartbreaking cries of my son, Trenton. I know all of his cries and sounds. It wasn't the sensory overload cry nor was it a meltdown cry. It was his cry that something was wrong and he just simply can't communicate.
As my heart strings were being pulled from my heart one by one, I tried my best to figure it out. Not one form of communication that I tried worked. He kept on crying those big, crocodile tears and making his sounds that he makes when he tries so hard to tell me but can't.
As I am fighting back my tears, I ask him while waiting patiently between each question for a response. "Does your belly hurt? Does your teeth hurt? Does your head hurt? Does your legs hurt? Are you just tired and want to go to sleep but you can't so you are mad?
You name it, I am sure I asked it.
"Moochies. Moochies" I hear from the monitor.
Oh No! Andrew is awake now!! I run into his room.
"Andrew. Trenton is awake too and he needs me. Can you try and be a big boy and go back to sleep on your own?" I say hoping for the answer that I want.
"No. I need you too." Andrew says.
Of course he does! He needs his Mom just like Trenton does.
I pick Andrew up out of his bed and I bring him into Trenton's room.
"Andrew you need to just lay here in Trenton's bed on this side. Please be quiet. I will cuddle you back to sleep in here while I am also helping Trenton." I tell him.
" Ok. Moochies. Thank you." I hear his sweet little voice say. On some nights he wouldn't have been so cooperative but he was last night. Thank goodness!
Andrew and I both laid next to Trenton as he continued to cry his sad cry.
I kept telling Trenton we were both there for him and he could just cry as long as he needed. I told him repeatedly I wished it was me and not him that had autism. I made sure he knew that I knew his soul was in there and needed to express himself but just couldn't. I made sure he knew that I was right there wanting it to be different for him.
" If I could make you talk and communicate, I would T-man." I whispered in his ear while the tears roll down. " You just keep on fighting T-man. We are going to give autism the best run for its money that it has ever had. You just have to keep up the fight." I said as I let my tears meet his on the sheets.
I am not sure how long he laid there and cried. It feels like eternity when your child, the one you brought into the world, is laying there with something wrong but you just don't know what it is.
Eventually, he went back to sleep and so did Andrew. Both my babies sleeping one on each side. Both with challenges that I want to so badly to take away from them.
That kind of night is the type of night that I had EVERY SINGLE NIGHT for a few years. Thankfully, Andrew sleeps now for the most part.
When it was all said and done, I let myself go to sleep with one arm on Andrew and one on Trenton. Before I drifted off to sleep, I soaked up the moment.....one day they will be grown men and I know the heartache doesn't get any easier.
Andrew has a very difficult time as he gets older on making decisions. If he is given more than two choices he simply freezes and starts stressing out. This trait of his is getting worse as he gets older. Below is a real simple article on Aspergers (high functioning autism). I am posting it because it speaks on processing information and making decisions which is difficult for people like Andrew.
Almost every day he comes home with papers from school that he draws on. He tells me he chooses to sit by himself and draw while everyone else is playing. I ask him why and he tells me many reasons. One of the reasons is because he can't choose which toy to play with so he decides to sit and draw because drawing makes him happy and helps him block everything out that makes him nervous.
Below is one of the family pictures he has drawn lately. He loves to draw pictures of him, Tretnon, and I and of course, he loves to draw his Angry Birds!
I moved Trenton's schedule to the sensory room. It works out really good to have it in the sensory room because he spends most of his time there. I also still have the schedule strip up in his room in case we are up there and need to use it.
Like I have mentioned before, kids on the spectrum need to see visuals in order to transition better.
In the sensory room he has magnets as a schedule. The white board has the days of the week. On Sunday he always has his church magnet up and Monday-Friday we have Harsha pictures up. When he comes home from church and/or Harsha we check it off and then look at our schedule for the rest of the day:)
Andrew still uses a monthly calendar in his room to help him! He crosses out the day right before bed and he looks at the picture on the next day to see what he has!
Andrew also has a wall strip of day to day activities if he is having a harder day to transition, then we use it!
Tonight as I was laying in bed with Andrew he says out of the blue, "Moochies, what if I told you that you are cuter with make-up on?"
I said, "It's okay to tell Mommy that. I know I am cuter with make-up on."
He said, "Well, you are really cute with make-up on and without make-up. I just think you are just a little bit cuter with make-up on."
Oh Andrew!!! I just never know what you are going to say but I love it! I call him my honest little Andrew!
I want you to picture a neatly, organized file cabinet. In this file cabinet everything is organized exactly how you want it. We can compare an organized file cabinet to a neurotypical persons brain. Our brain is like a filing cabinet. Everything is organized and our brain automatically knows where to go to recall a memory. Our brain knows the exact file to pull out in order to have spoken language (expressive language) and our brain knows the file to pull out in order to understand (receptive) language and so on.
For a person with autism, their brain is not like an organized file cabinet. Instead, their brain is like a desk with all the files scattered all over the top of the desk in no certain order at all. I know if I walked into an office with a desk like that I wouldn't even know where to begin to find what I needed. This is how a person with autism lives every single day.
In order to help a person with autism to "organize their messy desk", one on one is needed. This is why a person with autism can often produce spoken language in a one on one setting. However, life happens and aside from therapy, sometimes one on one just can't happen. This is where a person with autism struggles, even high functioning kids like Andrew. Their disability gets in the way of them being able to communicate because their brain is like a messy desk.
For example, I know Trenton can say, " I want juice." Often it has to be manded and prompted but he can say it. Sometimes we have to wait while he processes the mand for a few seconds but it can be produced from his mouth. Yet, life isn't always like that. Often in this fast paced world there isn't time for mands or prompts. There isn't time to wait while the brain processes and finds the file that it needs. This is where individuals with autism have struggles with the ability to speak. Sometimes the environment isn't set up for them to speak. If I take Trenton out of the quiet, one on one ABA setting and take him to a place where there is noise and lots of sensory input, he may not even be able to produce the word "juice" if he needs a drink. His brain went from a filing cabinet to a messy desk because of the noise, sensory input, anxiety, and the people around him.
So, what do you do? Trenton is finally at a great level of being able to understand spoken language. I am so proud of him and the progress he has made in the last five years of therapy! I have done almost everything possible to help him in this area. I have spent hundreds of dollars on communication apps and have spent countless hours training myself to try to train him. I've learned sign language to try to teach him. You name it, I've done it!
With all of that said, late last summer his speech therapist got me set up with a great AAC device specialist out of Indianapolis. It has been a long process but I am in the works of getting Trenton an AAC device (Augmentative and Alternative Communication device). Trenton and I have been working hard with his therapist at Indianapolis making weekly trips there. His speech therapist has been using it with him here in Terre Haute. We still have a long process to go before Trenton receives his personal device. (They don't make it easy to get a device that is for sure! The cost is outrageous...not sure why they make it so difficult because it is not like it is a cheap item that someone off the street would want to buy.)
Anyway, we found a device that seemed to work good for him. I pray that he will be able to use this one day. Right now, Trenton is no where close to pulling out the AAC device and telling me all of his needs. We are a very long way from that...maybe even years from that. Some individuals with autism simply aren't able to ever communicate on one. However, I do believe that Trenton will be able to one day. I have FAITH and HOPE!!! So, since he is at a good point in his life where he can understand some things, then why not go ahead and get him used to having it around!!
The use of speech-generating devices have the most evidence for positive communication support that leads to spontaneous language per some of the recent research over the past ten years with autism. The deficits that Trenton and many other children with autism have with their speech and language contribute to their challenging behavior. As Trenton gets older, I see this more and more. His challenging behavior is because he can't communicate and deep inside him is that beautiful soul that knows exactly what he wants but his body just won't let him communicate it.
So much on this that I could speak of but for now just know that this is in the works and has been since late last summer. This will NEVER replace his ABA goal of producing spoken language. I will NEVER give up on him being able to speak! NEVER!!! As of right now, I have to provide everything possible for him to have the best, productive life possible and he is finally showing signs that this may be one good route to take!
A special thanks to my parents for helping me and making these long trips to Indianapolis possible!